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 From many of my UK friends, I know that the NHS[1] often uses outdated TSH ranges, so that thyroid patients might not be diagnosed until their TSH is quite a bit higher than the 3.0 stipulated as the cut-off point in the range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

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