This article is dedicated to everyone who has just been diagnosed with a chronic illness, in particular those whom I know personally and have done my best to help. It is also dedicated to my dear friend Anita Roberts who never ceases to inspire me (and amaze me!) with her positive spirit and determination.
I
Know that you are not doomed even if it might initially feel that way. Even if you are faced with unknowledgeable and uncaring doctors without any alternative (as is often the case for those with limited incomes and for those who live in the UK due to the NHS’s rather restrictive regime for thyroid treatment), there is still a host of things you can do to take your health into your own hands.
Take the example of supplements: I have lived in Germany since 2000 and when I was first diagnosed I rapidly recognised the importance of taking high-quality supplements in order to get my health back on track (many chronically ill patients are very low in vital nutrients such as ferritin/storage iron, magnesium, Vitamin B12, calcium, Vitamin D, etc.) Unfortunately, however, two factors put a spanner in my works: one of these was the fact that good-quality, and moreover, potent supplements are notoriously difficult to get hold of in Germany. However, I soon realised that a lot of times I can order these from amazon.de and if amazon.de doesn’t have them amazon.co.uk is also a good option. N.B. I avoid ordering supplements from the US as due to customs regulations there are often annoying delays and sometimes certain potencies are not even allowed into the country. The other route I took to get hold of supplements was to pick them up while on holiday in countries where I knew they would be available. Luckily for me, we have family in both the US and the UK, but other European countries such as Greece (to name but one) have less stringent laws with regard to supplements and OTC medications.
The second factor was that few doctors here seem to a. realise the importance of testing for levels such as Vitamin D which is extremely vital for good health, so you may just have to nag them to please do so. I had to specifically ask my first thyroid doc (who knew a lot about thyroid, but not about the importance of nutrition) to test for Vitamin D and sure enough I had a massive deficiency, which I have since remedied myself through taking supplements that I purchased in the US. If I hadn’t have taken the initiative, this deficiency might never have been discovered!
One thing that vexes me time and again is that even if you can get your doctor to perform these tests, many doctors are satisfied as long as your levels are within range, but often that’s not enough and you’ll want levels such as Vitamin D to be well within range – the ideal range seems to be 80 – 100 ng/ml. Vitamin D seems to be a big topic on all the forums (particularly now in winter!) because a large percentage of the world’s population is chronically deficient – I read that up to 90% of Americans have low Vitamin D, even if they live in sunnier climes, which seems to be due to the lack of direct sun exposure. That is: most people these days wear sunscreen to protect against skin cancer, although ironically Vitamin D deficiency also puts one at higher risk of cancer! Time and again, I hear how people are prescribed 400 IU of Vitamin D by their doctors (as was the case with my doctor), but if you are severely deficient that simply won’t be enough and you may well need 5000 IU or more – liquids and gel capsules seem to provide the best absorption and those of us who are chronically ill often suffer from malabsorption due to food intolerances or gut dysbiosis (imbalance). If you can’t get your doc to test for the levels you know you need, funds permitting you may consider private lab testing (which one can often find out about online or by asking in various thyroid forums).
It’s a similar case for UK thyroid patients who are desperate to get hold of Natural Desiccated Thyroid because the NHS (National Health Service) frequently refuses to prescribe T3 or NDT, supposedly because it is more expensive and some docs consider NDT to be risky and old-fashioned, but they obviously have not done their research! Many UK thyroid patients find they are relegated to staying ill and remaining on super low doses of T4-only thyroid hormone, so some seek to regain their lives by ordering NDT online. As the majority of UK thyroid patients I know are suffering terribly, I can certainly understand why they might take this route as a last resort – usually it is not through lack of trying to get a doctor to listen and prescribe them a med that actually resolves their symptoms! I’ve even known one UK patient who paid good money to see a private doctor only to feel it was a waste of time – luckily, however, there are a couple of good private doctors in the UK, but naturally not everyone can afford that. I would caution that if you do decide to take this route you should in any case make sure you closely monitor your thyroid levels, even if this means private testing because sadly the NHS rarely seems to test for levels such as Free T3 as T3 is rarely prescribed anyway, but if you are taking NDT you are taking T1, T2, T3, T4 and calcitonin, all the hormones our thyroid naturally produces.
II
Know that you are not alone and do your best to meet others who understand what you are going through – not only do you benefit from their company, but you also benefit from their experience. There are MANY knowledgeable patients and advocates out there. However, don’t rely solely on others to do your research for you as you are your own best advocate and it’s also not fair to take others’ time for granted. Oftentimes, doctors fail to listen and don’t look at the complete picture. They put us on thyroid hormones and think they’re done, but if only it were that simple – of course, you need to take a look at the entire endocrine system, as well as at the gut (food intolerances, candida, parasites, which is where stool testing can come in handy); check for infections such as (chronic) Epstein-Barr virus (I still can’t believe how many people are battling with this). I myself had it when I was first diagnosed – it takes a kidney punch at our immune systems and kicks them while they are already weakened due to factors such as autoimmune disease. But EBV is not the only infection – there are many others such as Cytomegalovirus, Yersinia, Helicobacter Pylori, Borreliosis (the trigger for Lyme disease), etc. All of these are cited to be either related to Hashimoto’s or the root cause of conditions such as Chronic Fatigue Syndrome/Myalgic Encephalitis.
When I was first diagnosed, I must admit that sites such as that of thyroid advocates Mary Shomon and Janie Bowthorpe pretty much saved my life. Stop the Thyroid Madness tends to have a lot of useful information on issues such as adrenal fatigue, Reverse T3 and of course NDT, which seems to be one of the site’s main focuses. Most of these sites also link to their Facebook or Twitter groups, which can be great ways of exchanging information, asking questions and offering/getting support. Other Facebook sites that I found later and that have really benefited me have been Hashimoto’s 411, Living With Hashimoto’s Disease, as well as Well-Women Group.com, a group that I co-moderate which provides much useful information on various different chronic illnesses from Hashimoto’s thyroiditis to fibromyalgia to scoliosis and more. We also focus a lot on solutions for UK thyroid patients as the founder, Mazzy Christie, is Irish and many of our members are from there or the UK. Allergen Free Diet for Hashimoto Patients, another group I co-moderate, focuses on solutions and support for those dealing with food intolerances and allergies, a big issue for many thyroid patients (particularly gluten). If you have fibro, you may be interested in Fibromyalgia is not BS, another group I co-moderate.
III
Be realistic with yourself and with your doctors. Whilst you should be vigilant at all times in order to ensure that you are getting the treatment you need (and whilst you may sometimes have to take action yourself – as explained above), it does take time to get well and so celebrate every step of progress. Sometimes you will find that you take a step forward only to take a step back, but often if you do look at the big picture and do your best to tackle all facets of your condition, you will find that this reaps rewards. Most likely, I will always have to deal with a chronic illness, but it doesn’t matter to me much anymore because when I look back I see how many meds I used to be on and how on diagnosis I suffered from other complications such as elevated triglycerides, borderline blood sugars, repeated bouts of candida … now things seem to have settled down, largely because of being on the right meds, but the diagnosis of food intolerances and the overhaul of my diet have really helped too, as have the workouts with my personal trainer Dani and the administration of some really good nutritional supplements. I now feel that my condition has become pretty stable and I can more or less live a normal life. I know some of you will say that I am one of the lucky ones, but I assure you that on diagnosis I could hardly get out of bed and was sleeping all day – how far I have come since then, but I worked bloody hard to get there and I don’t believe I would have made such progress without constant research, determination and initiative (what the doctors did for me alone was simply not enough for me to be able to rest on my laurels). In fact, now I can honestly say that in many ways I am probably healthier than someone who isn’t dealing with thyroid disease, mainly because my diagnosis gave me a wake-up call and has taught me how to achieve and maintain good health.
IV
Accept your emotions and don’t fight them or feel guilty for feeling this way. You may go from denial to anger to fear to grief to acceptance in no particular order. A diagnosis with chronic illness is like losing a loved one. Take it one day at a time and share your feelings with friends who are going through the same thing – it can help tremendously to know you are not going crazy. Don’t worry about bringing people down with your emotions or constantly force yourself to put on a happy face – if you are with true friends, you should be able to be yourself rather than pretend that everything is okay and we are all allowed to have bad days from time to time. We can’t always be cock-eyed optimists. That said, do choose carefully whom you confide in as not everyone gets it and confiding in the wrong person may well make you feel even worse.
V
Don’t give up after one bad doctor. Many of us have had to go from doctor to doctor to doctor in order to get well, but if the alternative is to remain sick, that isn’t really an alternative, is it? Also, don’t be afraid of seeking a second opinion or getting a referral to a specialist if that is what it takes. Likewise, many of us have had to fight to even get a diagnosis – in the case of thyroid disease, as you probably know, many doctors are overly reliant on TSH tests alone, which don’t always show up thyroid problems even if they are existent. A new diagnosis may make you feel as if you are cursed, but look at it another way – this is the start of a new chapter in your life and an opportunity to finally get well after so many months or even years of hellacious symptoms. As I have mentioned before, I was relieved to finally get a diagnosis and to know that there was something I could do to change things.
I’d love to hear your feedback and suggestions and tips that you would make to someone who is dealing with a new diagnosis.
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