23 May 2011 ~ 29 Comments

Sorry Mrs T, Your Blood Tests Look Normal or The Tragic Tale of a UK Thyroid Patient

In the past, I have repeatedly talked about UK thyroid patients who are not getting the treatment they need – many are undermedicated and some are not medicated at all despite the fact that they display obvious symptoms and are desperate for help. From many of my UK friends, I know that the NHS[1] often uses outdated TSH ranges, so that thyroid patients might not be diagnosed until their TSH is quite a bit higher than the 3.0 stipulated as the cut-off point in the range defined by the American Association of Clinical Endocrinologists (many progressive doctors are now starting to use 2.5 or less as a cut-off point).

Of course, that’s not the only problem with TSH levels. There are those, such as my fiancé, who would never have been diagnosed by many doctors because his TSH looks normal. But he certainly didn’t feel normal and that’s where doctors need to remember to factor in symptoms, something that quite a few fail to do. They’re slaves to the blood tests, but these aren’t always reliable, but what is a reliable indication is how we are feeling. In fact, Dr Teitelbaum talks about this in my interview with him.

Indeed, so obsessed are some doctors with basing a thyroid diagnosis on TSH alone that they seem to forget that it’s not even a thyroid hormone! Thyroid Stimulating Hormone is a pituitary hormone that “does what it says on the box” – it tells the thyroid to produce more or less hormone. Thus, it stands to reason that this test alone cannot possibly suffice to provide an accurate diagnosis, which is also why more progressive doctors tend to test the thyroid hormones that are freely available in the blood: free T3 and free T4.

But that’s not all. In times of stress, some doctors believe that our body fails to convert T4 into active T3 and instead produces inactive T3, otherwise known as Reverse T3, which is why they like to do that test too to see if the body is efficiently using the T3 it has available.

As you can see, blood tests can be rather deceptive. Blood tests aside, taking someone’s blood and totally ignoring their symptoms because their blood tests look normal is really rather short-sighted and as a result many thyroid patients feel severely let down. One such person is UK patient S who has fought like a tiger to get a diagnosis and to get well. Here is her story.

It all started in July 2005. S weighed in at 17½ stone (245 pounds), was eating anything and everything and was having nose bleeds. A few years earlier, she had been diagnosed with high blood pressure and went to see her doctor about her weight. This time he diagnosed her with non-alcoholic fatty liver disease and, worst of all, diabetes. He even asked her if she drinks a lot and she said no – there are those who suffer from fatty liver disease without touching a drop of alcohol, particularly if their metabolism is compromised as it is in diabetes and hypothyroidism. As a result of S’s diabetes and high blood pressure, she also had “knackered kidneys”, as she puts it, because there was an excess of protein in her urine, also known as proteinurea, which if untreated can ultimately lead to kidney failure and patients needing a kidney transplant or regular kidney dialysis.

The doctor’s prescribed treatment was to put her on blood pressure medication and ask her to lose weight and change her lifestyle. And thus began S’s brutal exercise regime of 2 ½ hours a day plus a controlled diet. She lost about 10 pounds in three to four months, but her HbA1c (blood sugars over the last two to three months) hadn’t decreased, so she was put on Metformin and later on Gliclazide. Her blood sugars finally started improving, but the protein in her urine got higher and higher. The doctors were baffled by her normal kidney test and so they sent her for a creatine clearance test to further evaluate her kidney function. Then she started losing more weight and dropped from 17½ stone (245 pounds) to 11 st 4 (154 pounds). Her liver enzymes normalised and whilst the protein in her urine was still elevated, it wasn’t much cause for concern. She was also taken off the diabetes meds.

Everything seemed to be going well until one day some food got stuck in her throat and she found herself unable to swallow properly. Her husband performed the Heimlich maneuver to stop her from choking. It was then that she began feeling an odd sensation as if her muscles weren’t working and promptly sought out the doctor. She was quite freaked out by the whole experience and they sent her to a psychologist for cognitive behavioural therapy. Terrified that she was going to die if something wasn’t done about her swallowing problem, she tried to explain to the psychologist that she wasn’t just imagining this. The psychologist tried to tell her that it wasn’t going to happen again. And yet nobody bothered to medically examine her neck.

She continued to feel nervous as her throat still felt strange and she instinctively knew something was wrong. To this day, she still has trouble swallowing and is afraid to eat, so most of the time lives on liquid food such as raw foods and smoothies. She feels as if she is a nervous wreck and spiralling into a dark depth of depression. Following the appointments with the psychologist, which unsurprisingly didn’t do any good as they failed to tackle the real root of the problem, S’s hubby C asked her GP to examine her throat.

She was subsequently sent to an ENT (Ear, Nose and Throat doctor) who couldn’t find anything. He signed her off and sent her to a speech therapist. But no matter how many people she saw most of them were mean to her and told her it was all in her head (she certainly isn’t the first patient to be told she is imagining her illness or that she should just take some antidepressants). The speech therapist performed a video fluoroscopy, which is an x-ray that gathers information about how you swallow various substances. As she swallowed some yogurt, it was clearly visible that her food pipe was deviating to the right.

And that is when S’s goitre was found. The speech therapist was taken aback and rushed to refer S back to the ENT who diagnosed her with a multinodular goitre that is growing down into her chest and is pressing into her food pipe – finally a physical explanation for the “imaginary” swallowing problems S had been experiencing all along, although the doctors had claimed that it was “impossible” for this to affect S’s swallowing.

It was then that S had her first TSH test, which came out normal. She was sent to a goitre and thyroid specialist who were rude and nasty and, as S puts it, “didn’t know what they were doing. They said they were happy to take out my thyroid as it could be affecting my breathing, but when I declined, the doctor countered: ‘Well come back when you can’t climb the stairs because you can’t breathe!’” S was speechless at his heartless attitude and requested her GP refer her to someone else.

The next specialist tested S’s TSH, free T3 and free T4. The free T3 was on the low end, but because S’s TSH looked almost hyper according to the ranges, the doctors have to date refused to treat her thyroid. That said, I must remark that many hypothyroid patients may need their TSH to look almost hyper before they experience proper alleviation of symptoms – the free T3 and free T4 are usually the more telling tests and you can have these in the normal range and still have a hyper-looking TSH without actually being hyperthyroid.

The thing is, despite S’s most recent TSH being a “hyper” 0.02, hypothyroid symptoms abound: in no particular order, S suffers from constipation, brain fog, uncontrolled weight gain, problems swallowing (because of her goitre), hair loss (“I don’t like washing my hair in the shower because I end up with the bath plug full of hair”), brain fog (“on our weekly walk that we’ve been doing for years, I suddenly forgot my way”), an itchy, red rash on her nose and chin and the worsening of her asthma (“I get totally out of breath when walking”).

On top of all this, S also suffers from high cholesterol, a very common symptom of hypothyroidism. Ironically, S’s doctors are eager to treat this and are considering sending her to a lipidologist, a specialist in blood fats, but if they would at least try her on thyroid hormone, they might in fact find that her cholesterol went down without any extra medication. I’ve often heard of doctors eager to treat the myriad of symptoms of hypothyroidism, but unwilling to even try the patient on a small dose of thyroid hormone and slowly work it up. Considering what I wrote above about the sole reliance on the TSH test, I guess this isn’t really surprising.

As I said above, S has never stopped fighting to get well. She’s been following an 1800-calorie a day diet since September 2009 and exercises at least 1¾ – 2½ hours a day. She’s glad her hubby sees what she eats and how much she exercises because she already feels like she’s going crazy. “My oh so understanding endocrinologist told me ‘You must exercise more and eat less!’ I’m at my wits’ end. I cry everyday about my weight – I shouldn’t be so fucking fat, but there’s no way I can do more than I’m already doing unless I literally starve myself!”

S is also taking several supplements including coconut oil (“I take a tablespoon a day – new studies say it’s good for Alzheimer’s, memory and weight loss”) and kelp powder in her smoothies in an effort to help her thyroid, but unfortunately she’s not having much success. Recently, she was also put back on diabetic meds to help her lose weight and to lower her blood sugars (she is rather tellingly putting on a lot of weight on her stomach, which is often caused by elevated blood sugars). It’s not working and she seems to be losing much less than her hubby who is on the same diet as her: “I know the trend now – my sugars will go up along with my liver enzymes as I put on weight and there is nothing I can do about it. I just feel so frustrated because I feel as if I’d have to eat next to nothing and exercise all day to lose weight”.

Recently, S tried to get her doctor to refer her to private thyroid specialist Dr Gordon Skinner who is very renowned in the UK for helping many patients. She’d have to pay for this out of pocket, but ironically still needs her GP’s permission, which is ever so slightly ludicrous and to my mind extremely bloody cheeky! Sadly, her GP refused because Dr Skinner is “not an endocrinologist” and probably because of his disputes with the General Medical Council (GMC) who seem to have been “attacking” numerous thyroid doctors in recent years – take popular doctor Sarah Myhill or Barry Durrant-Peatfield. Interestingly, most of what one reads on the net about such doctors is from patients expressing their overwhelming support of these doctors who have “helped them get back their lives”, but the GMC seems to have a problem with their “alternative treatment methods” such as lack of strict adherence to blood tests. I guess doctors such as Dr Teitelbaum might also be in the firing line were he practicing in the UK!

As S says, “At the moment I’d pay my life savings to get my throat and weight problem sorted out. I suffer from depression and mood swings and I can’t remember the last time I smiled since my thyroid problem (as we know, the thyroid can also affect your moods, but it’s hardly any wonder S is depressed considering her symptoms and the lack of help she is getting for them). Trying to get help in the UK even if you want to pay is ridiculously difficult. It’s crazy that we have to put up with this. I’m thinking that I might even go to a private GP. It all comes down to money at the end of the day. I can just about get enough money together to pay a specialist, but not a GP yet. I’m paying for it, so I shouldn’t have to ask the NHS”.

Another problem that S mentions with the NHS is the fact that they don’t perform many tests and the ones that they do aren’t always done properly. For instance, the one test she had for Cushing’s involved the blood being drawn at 9:00 am instead of the requisite 8:00 am, which is the best time to draw blood for this test. S mentioned that tests such as Reverse T3 are never performed and frankly I’m surprised she even got the doctors to test her free T3. From my many interactions with UK thyroid patients, I know that the free T3 test can be a very elusive test indeed. Even here in Germany, I was once told by a rather ignorant GP that it’s simply not necessary to test for free T3. Naturally, the same doctors tend to believe that T3 hormone isn’t necessary either because there is no such thing as a “poor converter”, i.e. a patient whose thyroid has trouble converting sufficient T4 to the more active hormone T3. Consequently, T3 hormone is very rarely prescribed for hypothyroidism in the UK, although many patients would undoubtedly benefit from it. As a side note, there are apparently good docs who don’t test free T3, but then these docs mainly base the patient’s dose and choice of medicine on how the patient is actually feeling, which is often a more accurate indicator than a blood test anyway.

Right now S describes herself as “pissed off and getting fatter by the day. I can’t lift my arms because of the excruciating pain caused by my goitre, which also causes me to cough and choke. It presses into my throat when I lie down or lift my arms above my head”. S is still an avid exerciser, but one of her favourite sports of working out with the “sexy bar”, which you shake and it vibrates as you lift it above your head (sounds quite kinky!) is sadly no longer possible either. Sometimes thyroid disease traps you in the vicious circle of weight gain-needing to work out-being unable to work out due to pain and sheer and utter exhaustion.

S describes thyroid disease as an invisible illness: “I never even knew it existed before I became afflicted and I wish to God I’d never heard of the thyroid. I never realized such a small gland can cause so much agro and upset and change your life forever!” I for one wasn’t aware of this either before my diagnosis, which is why it is so very important to raise awareness for our illness and in so doing sweep away people’s ignorance and hopefully educate them in the process. This of course includes doctors. S continues her fight with the medical profession who “would take my thyroid out tomorrow. I’d like to find a way to shrink it naturally. Right now I don’t yet suffer from tiredness, but what I’ve read about losing your thyroid scares the shit out of me. Currently, the problems caused by my goitre have taken a backseat and I’m more concerned about my uncontrolled weight gain”. From what I’ve read thyroid hormone can be used to shrink a goitre, so frankly it’s beyond me why on earth the doctors wouldn’t at least test S on a trial dose of thyroid hormone, particularly as she does seem to be a textbook case with her myriad of symptoms.

S describes her goitre as an “alien in her throat” and whilst she’s doing her utmost to keep her thyroid, she realises that it may have to come out in the end. She finds the whole process overwhelming and educating herself about her illness has helped her to cope. Her hubby C bought her a fabulous book, which she recommends to everyone with diabetes: “The First Year: Type 2 Diabetes” by Gretchen Becker. S explains: “When I was diagnosed with diabetes, I found it difficult to come to terms with the fact that it’s for the rest of my life. I try to keep it under control with exercise and lifestyle, but it’s becoming increasingly difficult thanks to the weight gain and rise in blood sugars caused by my thyroid”.

S feels quite literally “doomed, hopeless and helpless”. Doctors assume I’m lying about my diet and exercise or tell me to take a course of antidepressants, but I like my life – I just don’t like what’s happening to my body”. S is angry and feels “let down by the NHS. They’re pretty good in other areas, but you can forget it when it comes to complicated cases”. S comments that she is happy to have a special diabetes nurse: “It really is a postcode lottery and I’m one of the lucky ones who gets on-going care”. I’ve heard similar stories from other UK patients who tell me how a few select doctors will actually prescribe T3, but it depends on where you live as to whether you can actually see them. S sometimes feels “very black and can’t see the light at the end of the tunnel. I feel blessed to have my supportive husband C who even accompanies me to appointments as I don’t know what I’d do without him. I try to keep my chin up and continue to exercise and eat healthily, still hoping that one day something will kick in and my body will start working again”.

Thank you very much, S, for taking the time to talk to me. I and all of us at Butterflies & Phoenixes wish you improved health and happiness for the future.


[1] National Health Service: the UK’s publicly funded healthcare system

29 Responses to “Sorry Mrs T, Your Blood Tests Look Normal or The Tragic Tale of a UK Thyroid Patient”

  1. Miriam Lipsidge 23 May 2011 at 10:40 pm Permalink

    Once again a very good, factual and interesting article, Sarah. I sympathise with S in your article and hope one day that she will get the treatment she deserves and finds that elusive doctor who will treat her with thyroid hormones, she certainly needs them by all accounts. I hope that S can find a private doctor who will listen and prescribe the medication she so desperately deserves.

    I will always struggle with my thyroid and weight problem because I don’t feel I am treated properly, but as long as the NHS here in the UK keep under treating us thyroid sufferers, then I can’t see that happening any time in the future. I got nowhere seeing an endocrinologist either who virtually told me that my thyroid was stable and actually decreased my thyroid meds cos of the TSH result, not listening to me at all. In other words I felt humiliated, just like S in your article. I guess I am a little more fortunate than S cos I am prescribed thyroxine and can self dose if I need more energy levels for a short period of time, which I guess is to my advantage, and as thyroxine only has a half life of 7 days, I can quickly get rid of the extra thyroxine in plenty of time to give me an accurate result for my prescribe dose for my next blood test!! I only wish S will be given the thyroid meds one day soon to be able to improve her health.

    Keep up those great articles, Sarah.

    • Sarah Downing 23 May 2011 at 11:32 pm Permalink

      Hey Miriam,

      Thanks for your comments. I too wish for S that she could find the doctor that she so desperately needs. It’s horribly unfair that so many people have to go through such situations. I’m sorry you also suffer under the NHS. Too many doctors focus on blood tests alone and that’s just not right. In fact, I recently changes doctors because I felt that I needed a more holistic approach. More doctor is obsessed with blood tests, but he often neglects other important things such as Vitamin D levels, Vitamin B, candida, etc. etc. With my new doctor who offers a mixture of traditional and alternative medicine, I’m hoping to get closer to regaining my health.

      Love,

      Sarah

  2. Gillian Broughton 26 May 2011 at 12:44 pm Permalink

    Both me and son was both exposed to pesticides which contained 2,4 D which disrupted our endocrine system , I was succesfully taking thyroxine for 20 yrs before the exposure .

    Both of us had NHS thyroid test which was normal ?
    We had private test at Genova Diagnostics and they were abnormal ,
    I was toxic of Thyroxine and was made very ill indeed , I was advised to take T3 which i have been taking for nearly 2 years without any side effects , I have to pay private for these tablets as NHS will not give them to me due to the High cost ?
    I was told by GP they cost £120 per month ? yet i pay £ 100 per year ,
    The NHS finance section need to get shopping around .

    Patients are then left without a choice of Thyroid medications, as NHS are pushing Thyroxine only on them !!!!!

    • Sarah Downing 26 May 2011 at 12:58 pm Permalink

      Hi Gillian,

      Thanks for commenting. I’m sorry to hear both you and your son have thyroid disease too. From what I hear, the NHS are notorious for saying that thyroid tests are normal when often they are not. It seems most doctors in the UK base “normal” on the old-fashioned ranges that have since been updated. I’m glad you are able to get hold of T3 and that it is helping you even if you have to pay for it out of pocket. It seems so wrong that patients shouldn’t be given a choice.

      Cheers,

      Sarah

  3. Sally Baker 30 May 2011 at 11:25 pm Permalink

    This could almost be me. I suffered hypo symptoms for many years and four times was told my thyroid was normal and healthy. The last consultant I saw was very unpleasant and told me to get on with my life as I was healthy – and he told me to go on a diet. After 6 years of feeling poorly and being humiliated I decided they must be right and I assumed everyone felt like me.

    Move on four years, I live in France and a throw away comment to my GP led to the discovery of a very enlarged thyroid, with 5 nodules and a hypo TSH… sadly one nodule was malignant and I was diagnosed with Stage II follicular cancer with lymph node spread last year.

    I am now well and I can expect to stay well. Words cannot experss how angry and let down I feel by the UK system.

    I do hope S in your story finds some help and resolutions.

    • Sarah Downing 30 May 2011 at 11:32 pm Permalink

      Hi Sally,

      Thank you very much for sharing your story. This is so sad how easy it is for diagnoses to be missed altogether. I’m very happy for you that you are now well, but I totally understand why you would be angry at the NHS. It sickens me to see how many people are suffering in the UK and, like you, I can but hope that some day soon my friend S will get the treatment she deserves and so desperately needs. I don’t know why some members of the medical profession are so insensitive – if they knew they were going to be like that, why did they choose to work with people in the first place. There’s that phrase in the Hippocratic Oath that talks about “do no harm” – well, they sure as hell are doing harm by fobbing off people’s genuine suffering. I hear that the French healthcare system and the social security system (Sécu) are among the best in Europe, so I’m glad for you that you moved. The German one is definitely better than the UK one too. If I hadn’t have moved, I might never have been diagnosed.

      Wishing you continued good health,

      Sarah

      • Sally Baker 30 May 2011 at 11:37 pm Permalink

        Sarah – yes like you if I had not moved I may not have been diagnosed until it was too late. I just hope that more and more is discovered about thyroid disease and this helps with diagnosis and treatments; and maybe just maybe they’ll ditch the TSH test!

        • Sarah Downing 30 May 2011 at 11:50 pm Permalink

          Well said, Sally! So do I:-). This is why I was eager to report on my friend S’s particular case because her story is sadly one that is representative of the plight of too many UK thyroid patients. I know many sites focus a lot on the situation for US patients, but I would like to spotlight both situations, particularly because I am originally from the UK – I think thyroid patients worldwide are suffering and so we need to raise awareness for them all. The TSH test is so much BS. For instance, my new doc recently tested my levels. Despite the fact that my FT4 wasn’t even within range and my FT3 was kind of mediocre, I had a TSH of 0.6. Moreover, my other blood levels (apart from a minor elevation in uric acid, which I believe is common for thyroid patients and not surprising to me as my body is obviously imbalanced right now, which is why I went to this new holistic doc in the first place) were pretty damn good. I ironically remarked to my doc that “I am well!” Not really, but I was joking. It’s frustrating when your tests make you look healthy, but you don’t feel healthy or balanced. My doc responded that that’s why naturopathic medicine is the only option in certain cases. Sadly, it’s also more expensive and something that is not always covered by the insurance companies who are all too keen to treat you strictly by the blood levels and by giving you a whole arsenal of medicines, which often aggravate the problem. For instance, many docs are eager to hand out antibiotics like Smarties, but forget the disasterous impacts that these can often have on your intestinal flora. In fact, this is why I suspect I am not properly absorbing my meds at the moment. Very frustrating, but something I am doing my damnedest to get fixed. BTW: I meant to ask out of curiosity: whereabouts are you based in France? We’re actually going to France for a road trip on Wednesday – quite looking forward to getting away.

          Cheers,

          Sarah

  4. Sarah Downing 17 June 2011 at 2:28 pm Permalink

    Hi Stephen,

    Glad you liked the blog and thanks for sharing it. I’ll be writing a new post very soon:-).

    Cheers,

    Sarah

  5. j Franklin 2 July 2011 at 9:41 pm Permalink

    hi there, this post is nothing new it happens all the time. you get the tests and bingo they are normal. go to http://www.labtestsonline.co.uk
    and you will find that the normal test is actually a reference range.
    and the tests are not worth the paper it`s printed on. go to-
    tpa-uk.org.uk and join this group who will help you get the treatment you need. also thyroid-uk will inform you, stop the thyroidmaddness
    and their are many more sites that will explain things so you get the power to take charge of your health and not let doctors keep you ill.
    i did this myself and learned all about how to keep well-self treat and
    not let uninformed doctors stop me getting a life.

    • Sarah Downing 2 July 2011 at 10:15 pm Permalink

      Hi J Franklin,

      No, it’s nothing new, but I decided to take the time to write about S’s experience to raise awareness for how bad the situation in the UK truly is at times. S has indeed done plenty of research (and I suspect she is familiar with the sites you mentioned. I have already put her in touch with Dawn Wood), but short of getting a private doctor and paying out of pocket I think she feels that she’s pretty much hit a dead end. I did mention the fact that it is possible to order NDT from the UK without a prescription, but of course you’d still want to get your blood levels monitored every now and again, which in the UK often means private testing and paying more money out of pocket as so many docs don’t test for free T3.

      I’m happy for you that you feel confident self-treating, but I believe that is an individual decision and still requires close monitoring of your levels.

      Thank you for taking the time to comment. I’ll pass your tips on to S.

      Cheers,

      Sarah

  6. Angela 3 July 2011 at 1:31 pm Permalink

    hello Sarah,
    i think its great that you are highlighting this very commone and sadly under diagnoised, undertreated illness in the UK. I am such a sufferer who though i was ‘formerly’ diagnosed as hypothroid by my GP and met the ridculous gold standard of the TSH, I still did not recieve appropraite medication for my condtion. i decided taht seeing a doctor privately was well worth the expense if it meant that my health would improve. Indeed it did but only when I decided that I would pay for the meds and any tests that my GP wouldn’t do. I don’t agree with this at all but I have only one life and I have no sense of the UK edos taking any responsibility for their outdated ill advised approach to treatment. Ironically after two years of paying for my medication privately I managed to convince a different NHS genral practise to pay for my meds. My arguement was based on it being cheaper to prescirbe these meds for my throid then provide all the myriad of other meds that i would ne ed if not on them. That isthe reason they agreed to prescribe! Howeve such is the fear in GP’s of consequences from the GMC if they don’t follow the outdated rigid regime imposed on them in the uk that I was also told that if there was any threst that they would loose any money from their practice as a result of prescribing me meds (Erfa Thyroid) they would stop immediatley prescribing them. This show that in the uk it has nothing to do with treating patients optimally but everything to do with money and postulating outdated practise. Ironically these outdated practises mean that patients end up costing more to the NHS becasue they endu p on pain killers, laxatives, water retention tablets, blood pressure tablets, antacids, etc… Sorry if I sound angry it is because I am but not at you or your article but at what I have to do to gain what i know I need to keep me well!
    Please keep publishing our plight. Thank you.

    • Sarah Downing 3 July 2011 at 4:31 pm Permalink

      Dear Angela,

      I’m glad you liked my article. Thanks for taking the time to comment. I’m very sorry to hear that you have also had to deal with this “NHS nightmare”. I often think I’m very lucky that I moved to Germany because otherwise it is likely that I would never have been diagnosed with a TSH of 4.78. You are very right that many patients probably do cost the NHS even more as a result of illnesses being triggered by their untreated thyroid disease. It really is ludicrous and for me it’s a no-brainer that people who are obviously hypo should be given the appropriate treatment.

      I’m very glad to hear that you are now doing well, even though you had to go through this battle to get there. Please don’t apologise for your anger. Frankly, I am bloody angry that such doctors make so many patients needlessly suffer because of their stubborn ignorance and the bullying of the GMC and their witch hunt of some very good thyroid doctors.

      Take care of yourself! I will continue to do my bit to raise awareness for thyroid disease and improve the plight of untreated thyroid patients.

      Cheers,

      Sarah

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    • Sarah Downing 1 September 2011 at 10:44 am Permalink

      Hello registered dietician,

      Thank you very much for your comments. As it stands, for people with thyroid disease – as S has it here – weight loss is just one of many worries. I personally put on some weight due to thyroid disease, which I have since lost, but for me that wasn’t the problem that vexed me the most. What did vex me was the debilitating tiredness and joint pain that made it almost impossible to work. I was never any more than a US Size 14, so I wasn’t obese and my other symptoms were likely caused by the lack of hormone. People with thyroid disease fight to get recognised by their doctors and to get the necessary treatment, often with combined T3 and T4 hormones rather than T4 only as T3 is known to be several times more active and many people are unable to convert T4 to T3, In addition, which you might find interesting, T3 is actually very helpful for weight loss. When you have thyroid disease you truly do have to made an inordinate amount of effort just to lose a little weight and sometimes this is even the case once you are diagnosed and treated. Many people find a low-carb diet the way to go, but of course everybody is different. Food intolerances and allergies are another part of the equation – they often go hand in hand with thyroid disease and there seems to be a definite connection between autoimmune (thyroid) disease and gluten intolerance/celiac. As you will see, I have written another post on this. Again, weight gain is just one of the many symptoms with which sufferers have to contend and for many of us it’s not even the worst.

      You’d actually be surprised how knowledgeable many thyroid patients are when it comes to diet and exercise. This is because we have to be. As you can see from the article, many of us have been let down by our doctors, so we have to take the bull by the horns and use our own initiative to do our research and get well. For me the other benefits of losing weight include gaining muscle and strength, as well as energy. In addition, blood sugars are often lowered, which is yet another symptom of hypothyroidism. Sadly, on the flip side, although we need to work out even more when we have an underactive thyroid/metabolism, many of us are so debilitated and simultaneously suffering with CFS/ME or fibromyalgia that we simply aren’t able to because we are either bedbound, in so much pain or both.

      “It is possible to do everything right and still gain!” Ain’t that the truth. A healthy diet, walking an hour a day and weight gain – that’s how I knew that I was suffering from an underactive thyroid and as you can see from S in this article she really is a fighter and knowing her personally, I can attest to how healthy her diet is and just how much she works out, so still gaining despite all this effort is quite simply heartbreaking! Many people fail to realise or acknowledge this – even doctors call thyroid patients fat and personally I was subjected to years of abuse by my very own family thanks to weight gain through no fault of my own. That is what in part causes the depression! Looking back, I don’t think I was horribly unhealthy or unattractive! I think I always looked pretty good, but I feel better now because my clothes fit better, I am fitter and my back pain has been significantly reduced – this was caused in part by the fact that my boobs ballooned due to hypothyroidism. As I lost weight, these too reduced in size, but I’ll always be naturally busty, which also accounts in part for the fact that my body doesn’t fit in with the BMI. Then again, I know how healthy I am and my personal trainer attests to it too – if there is such a thing as big bones, then I have them because even at a US Size 8 I was technically still overweight, but realistically there was no way I actually was. I wish more doctors would look at the overall picture rather than just the numbers. Of course, as we work out we also gain muscle, which has definitely been the case for me. And the extra boobage also adds quite a few pounds to the scale!

      Many thyroid patients follow a whole foods diet and going gluten-free is becoming increasingly popular, in part due to the autoimmune connection I mentioned above. Testing for food intolerances or doing elimination diets are also frequent occurrences. Stool tests have proven helpful too in connection with the parasites you mentioned, but also issues such as systemic candida (which is often found in the gut and is yet another condition common in Hashimoto’s sufferers).

      I couldn’t agree more about your comment on diet fads. Personally, I have never believed in diets. Whilst I am not worried about my weight at present, I’m off all my food intolerances (gluten, egg, dairy), cook practically all meals at home with whole foods and regard this as a lifestyle rather than a temporary attempt to ditch the pounds. I couldn’t give a shit so much about the pounds as about the fact that I want to be healthy, feel good and have a balanced thyroid – and I’m certainly on the right track:-).

      As I mentioned above that many thyroid patients consume whole foods, it goes without saying that many of us also avoid highly processed foods, which are basically the devil in disguise when it comes to weight loss! Sometimes yummy, but horribly, horribly unhealthy and detrimental.

      Thanks again for commenting. I have to go now as I’m off for my biweekly session with my personal trainer:-).

      Cheers,

      Sarah

  8. Tansy 1 September 2011 at 5:39 pm Permalink

    I stumbled upon this website whilst looking for something else albeit related. What really really saddens me is the amount of patient led material, all singing from the same hymn sheet, old and new there is acually floating about in the ether. What really angers me is that NOTHING has been done or changed in this country and will continue to plod on all the same whilst more and more people will join us already suffering.
    After eventually getting diagnosed after fighting for at least 10 years to be heard I now face other battles – to be treated. My level at Feb ’11 was 59.9 and is now 0.19 with which my GP told me gleefully that I was well again and maybe we should look at my “Mental Health” although I had told him I still felt ill and that I was experiencing a really bad bout of what is known as Carpel Tunnel Syndrome. That was the point when I started to get angry. I’m tired of feeling ill and I’m tired of having to fight to get treated. What my GP doesn’t understand either is that I am a Wife and a Mother with which my illness affects. My Husband and three Daughters have to live with this illness to.
    We need to stand together (easier typed than done) and make a change. Writing to your local MP or Health Secretary is a start. If enough people do this maybe then they will listen. We cannot stand alone on this but must come together and show that enough is enough and we need change in how we are tested,treated and medicated.
    Until then plod on
    Tansy

    • Sarah Downing 1 September 2011 at 6:01 pm Permalink

      Hi Tansy,

      You are so right – there are vast amounts of misinformation about thyroid disease, obsessed with TSH and even then focussing on outdated levels, unwilling to take symptoms into account over blood tests. It angers me too to see the situation in the UK, which is why I write about it when I can to raise awareness. I no longer live in the UK, but my mother does and she is hypothyroid. Luckily, she seems to have it somewhat under control though. I think in many ways I have suffered worse symptoms than her, but I also suspect that it may be due to the stress of my job and other factors.

      I’m very sorry that you had to wait 10 years for a diagnosis. I had a similar experience with a GP telling me I was cured with a TSH of 1.8 – the hell I was! I still felt like shit warmed up! I hate it when GPs pull out the mental health card. The one time I had to deal with that was shortly after my diagnosis when my GP tried to tell me I was tired and sleeping all day because I was emotionally overwhelmed by the loss of my mother-in-law, but I know my body and I know how it reacts to being emotionally overwhelmed and it was never that extreme as it was when I was suffering from an undertreated thyroid.

      I too believe that working together as patients truly is the way forward and I’d like to think that all this raising awareness we do will in time pay off and help others attain better treatment.

      Take care of yourself. I sincerely hope that your situation improves. A friend of mine, Dawn Wood, runs http://www.thyroid-disease.org.uk/. She may be worth getting in contact with to try and find a better doctor. I’ll be happy to get her email for you if you like. Just let me know. So true also your comment about how illness affects whole families and of course our ability to function and do our jobs. Too many GPs just don’t seem to give a shit.

      Good luck and all the best,

      Sarah

      • Angela 4 September 2011 at 11:37 pm Permalink

        Hi Sarah,
        Just to comment furher on the weight issue. I really appreciate your comment earlier. i really do not think it is an easy issue to solve. having got my thyroid in balance with my meds (finally), I finally decided to pay heed to Dr Peatfields advice in his book. he suggest that carbs for thyroid sufferes are the big baddy and that we should cut ours down. Coincidently i decided to try the HCG diet and yes the weight just dropped of me. What I noticed about thise diet is that carbs are treated with great care -not excluded but in smaller quantities then the original ‘triangle’ of food that is standard over here in Englnad. i feel wonderful without the bread, potatoes, pasta and rice -wholemeal versions might be more healthy but just a plain no no for me. i feel I have found a way to loose thie weight permanantly because it really helps to show you which foods put the weight on for slower metabolisms. I have already lost nearly two stone and am finally optimisitc that i can regain my slim body that i once had before this nasy condtion developed. i know exercise helps to keep our metabolism running higher but exercise will not help with weight loss but it will help with fitness. An example of this is that in january i took up Nordic walking (1hr 4x weekly) alongside swimming once per week and a yoga class once per week. i lost not one lb & could only be pleased tht i wasn’t putting more on. this shocked my Nordic walking intructor who told me that just three 30min session per week would get the weight fallling off…..she obviously had’t dealt with a person with an underactive thyroid!! It would be really great if the medical profession woke up to our particular problems with managing weight…..mind you i know most of us would just be great if they woke up and took note of our symptoms rather then our blood test results!!!!

        • Sarah Downing 5 September 2011 at 2:12 pm Permalink

          Hi Angela,

          For me thyroid disease has certainly been a learning experience. I’ve learned so much about health in general and with every new problem I have to face it teaches me so much more. Since the food intolerances diagnosis (which I described in a more recent article), I’ve been focusing on educating myself more about food and I am amazed to see how many people suffer from intolerances and how the inflammation the intolerances cause can also lead to weight gain. I saw my doctor today and she commented on how I now have a normal weight since eliminating my intolerances. I gave her a wry grin and told her that according to the scales and my BMI I am obese, which she agreed was ridiculous. My jerks of an insurance company need my doctor to write a report as they’ve refused to pay for quite a few treatments she has done. She wanted to write about how much weight I’d lost and what my current (normal) weight is. I explained that it would be best not to mention my weight because then they’ll think I’m morbidly obese! The BMI pisses me off everytime. Luckily, there are those doctors who do look at the overall person though – those are the same ones who actually pay attention to your symptoms rather than just your blood tests. I realised how much I love my current doctor today – she really is very empathic as doctors go and I’ll be sad to leave her. Her diagnosis of food intolerances has really been the key for me to lose weight without even really going on a diet. Sure, I have a special diet, but I am not on a diet, if you see what I’m saying. A lot of people also talk about TH1 and TH2 dominance as you can apparently test to see what kind of immune system you have and therefore which kinds of foods you should eat or avoid.

          So are you on the HCG diet, Angela? I’d be interested to hear more about it. I have heard the name mentioned several times, but to my shame I must admit I am not 100% sure what it refers to. Does it actually involve taking the HCG hormone or is a just a low-carb, high-protein diet?

          To me, reducing carbs makes a lot of sense. Also, from experience, I know it is very important to include a wide variety of foods in your diet, so if you are going to have carbs, perhaps having a variety of carbs is less damaging than say eating potatoes all the time. We tend to eat gluten-free pasta once in a blue moon and now and again we will eat various rices (including red and black rice) and gluten-free grains such as millet. I must admit that I do love potatoes, but don’t eat them all the time and even there we try to vary between blue potatoes, red potatoes, white potatoes, sweet potatoes … it makes dinner-time much more interesting and it cuts down on the risk of developing intolerances, which are apparently caused in part by eating too much of the same food.

          I’ve heard time and again that the bodies of hypothyroid patients just aren’t as good at processing carbs. This may well be why many of us have blood sugar problems such as diabetes and insulin resistance – vicious circle really – we are more prone to them thanks to our f**** u* metabolisms and once we are lumbered with these conditions they can be hard (but not impossible) to reverse and they impede weight loss further! Of course, starchy and high-carb foods are often best avoided by those with such issues.

          I am so thrilled for you that you finally feel a sense of optimism and hope again! I know only too well how it feels when you feel you are doomed to be fat and unhealthy for ever. Many of us have been there and still feel like that sometimes.

          As for exercise, I must admit that on the scales I haven’t lost a whole lot, but never forget: muscle weighs more than fat! I work out with my trainer twice a week and I really enjoy it. It’s quite an intense work-out and more than I ever would or could do on my own. Weightwise I am not that much different, but I look nice and buff and I have some sexy (but not manly) muscles too:-). As I mentioned above, weight is such a tricky thing to go by. Personally, I have given up going by weight and now just get my trainer to take my waist measurement – this gives me a much more realistic idea of how I am doing. Of course, when your clothes fit even though you haven’t lost any weight, that’s a good sign too. I find it’s an overall lifestyle approach of eating well, working out, remaining active and also taking the right supplements and dose of thyroid meds. I’m not obsessed with weight loss, but staying healthy is important to me and meanwhile I reckon some of my blood levels are probably better than people who don’t have thyroid disease. Then again, blood levels aren’t always an indication of anything much as this article shows. I guess specifically I am thinking of my triglycerides and cholesterol, both of which are meanwhile at excellent levels (although on diagnosis I had elevated triglycerides): Even my HbA1c was at 5.7, so was sort of borderline too. In hindsight, I don’t believe that my doctor should have put me on Metformin (a blood sugar-lowering medication) at that level as I strongly believe that balancing my thyroid would have balanced all this out on its own. I’m not fond of doctors who refuse to prescribe the necessary meds (e.g. in S’s case thyroid meds), but at the other extreme I am not fond of doctors who are overeager to prescribe meds. I believe Metformin really damaged my gut – I went through months of diarrhoea and bloating and I sometimes wonder if that contributed greatly to the development of food intolerances.

          Keep up the good work, Angela! You sound so determined and inspiring and I’ve very happy for you that you seem be reaping some just rewards:-).

          Love,

          Sarah

          • Angela 5 September 2011 at 8:03 pm Permalink

            Thanks Sarah,
            i agree with you and i think it’s important that we find out what works for us- after all we are all individual. As far as the HCG diet is concerned it was invented by a doctor over 50years ago! And yes it does involve taking hormone drops (homeopathic) sa well as a 500calory diet for 24 days, three wekks increasing your food (no drops) with more protein and veg, reintroducing oils, fat and diary and finally another three weeks reintroducing starches -bread, potatoes, rice & pasta. All the way thourgh you are carefully monitoring your weight and your measurements. This diet is meant to set your metablic set point to a higher one ( am a little sceptical of this bit). i got to know about it from a number of other hypothyroid people I met who have had great sucess with it and kept the weight off! now wouldn’t that be great?! If you google HCG you will find further info on it -you can douwnload for free the docs book, Pounds and Inches. Anyone considering should consult their ddoctor and should be very careful of where they buy the drops from (there are some hoaxes out there as the diet is becoming more popular). Without the drops you will become very very hungry -with them its a walk in the park! now I have lost some weight I feel well enoug hto pick up on my exercies programme again …yippee! 🙂 x

          • Sarah Downing 5 September 2011 at 8:29 pm Permalink

            Hey Angela,

            Thanks for your explanation. I did actually Google the diet, but couldn’t find a simple explanation of it this morning and then I had to rush out to take my hubby to the doctor’s. I usually accompany him as I’m the one who speaks fluent German in our house, so he likes me to go with him. I’m glad I did though because our doc had some questions for me regarding a report she needs to write for my insurance about some treatments she did when I was suffering badly because of my food intolerances. Ironically, she asked me the question I always dread (about my weight and height) so that she could put it in the report to (her words) “show that I am a normal weight” now. I had put on some weight thanks to the food intolerances. I told her with a wry smile that this would not be a good idea because I know that the insurance are obsessed with BMI and according to my BMI I am morbidly obese. She agreed that it was best not to list the numbers, but also said that was ridiculous as she would never have guessed my weight. Most people don’t. In the past months, I’ve had several medical professionals (including my personal trainer) confirm that I am a healthy weight, but of course I will never fit in with the precious BMI, so I have to hide the numbers, which I totally hate. Then again, any self-respecting doctor would take a look at me and know immediately that I am okay. Still, it made me good to hear that coming from my doctor. She is so positive and makes me feel good about my progress without taking credit for it herself as so many doctors tend to.

            The HCG diet sounds interesting (my doc actually did some homoeopathic treatments on me to boost weight loss too). I think I’ve heard it mentioned on Mary Shomon’s site and always did wonder what it was exactly. There are so many different diets out there that it can get overwhelming. I have read about the problem with the metabolic setting point. When you are overweight for quite some time, as we often are with thyroid disease, our body gets used to this and so when we finally do get our thyroids treated, it is often not as easy as we might hope to shed the extra weight as our body has become accustomed to what it now considers a normal weight for us, even if it isn’t a healthy weight. I also think that if you are super overweight thanks to thyroid disease, you may find you shed the pounds very fast at the beginning, but if you are just a bit overweight that’s when it becomes hard to lose those few extra pounds.

            I truly believe that whilst thyroid disease has changed our lives (mine and that of my husband) for the worse, it has also changed them for the better – we have never before eaten such a healthy diet, enjoyed food as much or paid so much attention to getting sufficient exercise. Corey (my hubby) also works out with the partner of my personal trainer and it has significantly improved his back pain caused by scoliosis. I think that many people put on weight as they get older and also develop health problems anyway, so getting on top of this and taking preventative measures at an early age is something we should all be doing, but often fail to doing unless we are fueled by the necessary incentive, as you are if you are determined to get well.

            Thank you so much for sharing your experiences with the HCG diet. I’m sure your posts will be very beneficial to other patients reading this. We should all share what has worked for us. I’m very pleased for you that you are doing so well. We both know how tough it is in the UK, but you really are being proactive to get well and it truly seems to be paying off! Again, keep up the good work and keep us posted on how you are doing.

            Love,

            Sarah

  9. J Franklin 5 September 2011 at 2:34 pm Permalink

    hi everyone looking for answers to their hypo/hyper/adrenals and more
    good book to explain and answer many of our questions on autoimmune
    and what to take re: supplements and vitamins.
    WHY DO I STILL HAVE THYROID SYMPTOMS WHEN MY LAB TESTS ARE NORMAL.
    by Datis Kharrazian, DHSc,DC,MS.amazon.com has this book andthe web site for this is http://www.thyroidbook.com

  10. Miriam Lipsidge 9 September 2011 at 11:28 pm Permalink

    Hi Sarah

    Just catching up with your web site, hence the reason I have been conspicuous by my absence!

    Interesting chat, especially about the diet side.

    As you know, I am a long term Thyroid sufferer. But I am a bit baffled. For the first time in all these years I have been told to say on 75 mcg Levothyroxine. I am not happy about this, but as my thyroid results have been stable I have no choice but to go along with the doctor. Normally when I am on below 100 mcg my TSH/T4 go hypo for me, but this time my TSH/T4 stayed the same at 0.44/19.1. And my blood pressure has come down as well and is stable too. Very strange. Also the doc reduced my cholesterol statins as well and changed the brand of my blood pressure pills too cos the chemist has changed the brand and now the pills are so big I find problems swallowing them, so she has given me an equivalent one but a lower dose too seeing as though my BP has come down too. The only downside to this I have slowed down as if I am working at half pace, and have to push myself to get stuff done as well as, not sleeping well. Having disturb nights sleep and the big bug bear is that I cannot seem to lose any weight which is frustrating to say the least, despite careful eating. So haven’t a clue what is going on. Not changed my lifestyle or anything. I have to go back in a couple of months to get all my blood work taken, so will see what is going on then. Anyway, just wanted to bring you up to date.

    Thanks for recommendation for the above book, it looks interesting.

    Hope all is well with you and Corey.

    Love Miriam

    • Sarah Downing 9 September 2011 at 11:37 pm Permalink

      Hey Miriam,

      That’s great news about your blood pressure going down, but the phrase about “we are patients rather than lab results” springs to mind. It would be interesting to know your lab’s FT4 ranges, but as you also know without testing Free T3, as I know most UK doctors refuse to do, your doctor isn’t really getting the full picture and as Free T3 is said to be 6-8 times more potent than Free T4, if you don’t have enough of this in your system this could well be what is causing your lingering symptoms, even if your TSH and Free T4 both look hunky-dory. Many people find that without optimised Free T3 they still struggle with weight loss and even if your doc were to test your Free T3 they might still be too focused on the TSH, so unable to see the big picture. I believe I wrote in this article or in the comments that there are those who even have suppressed TSH levels without being hyperthyroid and then there are those with normal TSH levels who are still hypothyroid, so TSH really isn’t as reliable as many people claim and it often leaves people undertreatment or at worst undiagnosed.

      I’m sorry to hear you are still suffering. I still wonder if you would consider trying the glandular extract Dawn mentioned or even ordering a trial of NDT. Personally, I believe it might make the world of difference, but of course everyone is different, so there is never any guarantee.

      Love,

      Sarah

      • Miriam Lipsidge 10 September 2011 at 12:09 am Permalink

        Hi Sarah

        Hi Sarah,

        Thanks for your advice. Yes, I agree with you regarding “we are patients rather than lab results”. There is no way I can get through to my doctors, tried that and failed! Can’t get any further at the moment. My lab T4 ranges are 11-25, so according to the charts I am upper end of normal! I agree that I think my T3 needs checking, but I am unlikely to get that done on the NHS.

        I might think about getting the glandular extract Dawn recommended. I would think about NDT but only as a last resort cos I don’t want to cause any conflict with my doctor. I am sure it would help but not happy I can’t get my doc to prescribe it on the NHS.

        Love Miriam

        • Sarah Downing 10 September 2011 at 10:37 am Permalink

          Hey Miriam,

          I can’t take credit for the phrase about patients and lab results although I do wholeheartedly agree with it – it is either Mary Shomon or Dr Teitelbaum who says that. Too true though! I know what a struggle it has been to get NHS doctors to listen to you and I forgot about the whole thing with possible conflicts with your doctor if you were to order NDT. I understand your concern. Glandular extract might be a good alternative though as it is available OTC. Keep me posted with what you decided.

          Love,

          Sarah

  11. source 27 May 2012 at 6:17 am Permalink

    Is it okay to insert part of this on my personal webpage if I post a reference to this web-site?

    • Sarah Downing 27 May 2012 at 11:28 am Permalink

      Yes, you may, Aina. As long as it is posted with a link back to the site, I’m happy for you to share this information.

      Cheers,

      Sarah


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