In a recent post I had a bit of a rant about making sure you get hold of your blood tests, and not to settle for being told “everything is fine” when you know it is not. I gave an example of how results can be within lab ranges, hence ‘normal’, hence ‘not worth worrying about’, when actually they may contain vital information that will help address or resolve your health problem.
So I wanted to share this letter from the BMJ, in response to an article Bad Medicine: Thyroid Disease, from a nurse who found herself up against the very system she works for when it came to her own health. It is a typical story of many of the patients who come to me having been let down so woefully by our ‘wonderful’ NHS.
I was trained as a nurse in Germany in the early 1990s. The past 13 years of my life I have spent working as a RGN and living in Bristol, UK. In 2003 I was diagnosed with Hashimoto’s desease and ever since on my own initiative I went for my annual thyroid test that consisted of Thyroid Stimulating Hormone test (TSH) –only! In the past 4-5 years I developed all the classical hypothyroid symptoms including lethargy, low mood, mood swings, coarse hair, dry skin, cold sensitivity, irregular periods, heavy periods, bad PMS, constipation, weight gain of 4 St in 2 years, abdominal bloating, facial swelling, low, low, low energy, concentration problems and forgetfulness, plus unexplained lactation of my breasts (my youngest child is 9 years old, breastfed for 6 months). I am still lactating. I truly believe that one does not have to be in the medical profession to realise that this is NOT normal and may require further investigation. I lived in fear of having a prolactinoma( brain tumour) for at least a year before my GP agreed to check my prolactin levels.My visits to the GP resulted in being refused a prolactin level check; being refused a full thyroid panel test; being told to “ stop squeezing my breasts”; being given Fluoxetine (an antidepressant) and being told to exercise more ( how do you do that if you can barely manage to function trough your day?). My TSH was steadily increasing over the years:
2009- 4.5 (given antidepressants for symptoms),
2010 – 3.6,
For my GP the TSH was “within a normal range”. Happy times minus picture book symptoms and the fact that no one ever checked my pulse, my BP or put 2 and 2 together. It is all about the TSH (not about the patient, individual approach –at least!). No!- all people in UK are absolutely identical-clones and if the lab result says that the normal range for TSH is up to 5.0 so there you are! And the even more shocking fact is that the recommendation for treating people in UK is when TSH is over 10 ! Just to mention, my mother is celiac and has Hashimotos, my grandmother died of brain metastasis secondary to thyroid cancer, my younger sister was diagnosed with Hashimoto’s disease at the age of 23 ( she lives in Germany and her TSH was 2.7 when she was prescribed the initial dose of levothiroxine ). Years on, she is feeling great and never had any symptoms that I suffered with over the years. Her and my qualitiy of life are polar opposites. Same diagnosis, just different medical approaches and treatment!I She is also suspected of having celiac disease;. I was recently made aware that in 2003 I had a positive celiac screen but was never told about it nor was I aware that I was investigated for it 10 years ago or followed up. I was avoiding grains for years because of the symptoms. Now my transglutaminase (tTG) antibodies were re-tested by my GP and as expected by me – came back negative (because I have been avoiding eating cereal grains anyway). When I started approaching my GP for further investigations because of elevated Liver Function Tests and years of suffering with various symptoms I started an in depth research involving studies across the world done on Hashimoto’s, hypothyroidism and celiac.
I am a native speaker of German and Serbo-Croatian language so I was able to investigate and read original scientific papers in these languages as well as in English. What I found is more than shocking!
The following countries USA, Germany, Switzerland, Austria, Norway, Sweden, Belgium have a upper limit for TSH between 2.5 (Germany) and 3.2 (Switzerland). Anything above it is treatable hypothyroidism. This is 4 times lower then the reference range in UK!
Americans have lowered the range only few years ago from upper TSH normal range of 3.0 to 2.5.How come there is a four fold difference in reference range between other developed countries and the UK alone? Does it really mean that all these other countries are putting thousands or possibly millions of their patients at health risk by giving them Levothiroxine long before any UK GP would even consider it or is it the other way around that possibly the UK’s doctors are putting millions of patients at risk of developing or not preventing progression of a disease by not treating them?
I just found out recently that Thyroxin is free of charge on the NHS!
It is not really rocket science to calculate how many millions of pounds have been saved by NHS with these guidelines. If we take the amount of people in UK that may have a TSH between 3.0 and 10.0, all the regular blood tests and free levothyroxine that they will require throughout their life, it seems a better option to rely on a 40 people study done in 2004 and ignore all the masses of evidence around what the normal reference ranges should be. The German National Health Service somehow managed to have 20 billion Euros surplus last year, so they do not bother about going higher with their lab values, TSH laboratory range upper limit is 2.5 and anyone above that level is considered hypothyroid.
I happened to be in Germany recently and was unwell with heart palpitations and weakness. After initial testing in A&E, a Professor endocrinologist was involved who was left speechless that with a TSH of 3.8 and TPO antibodies of 1290 all I had was an annual TSH screen, no treatment and no follow-up sonography for 10 years. To be fair, when I told him that I am unlikely to get any treatment (ie Levothyroxine) until my TSH reaches 10 he thought that I was hallucinating or lying for some reason.
Unfortunately this is just one story among many in this country. It is wrong; it is very bad and backwards medicine. There is so much evidence out there to prove different. My cholesterol is high, anything to do with my Hashimoto’s? I found about 5 recent research papers that prove –YES! Also found that if not treated with thyroxine, all this fat is going to cause arteriosclerosis, so here I am on a highway to coronary artery disease…angina pectoris…and much more to look forward to. I see the future…
There is ton’s of research end evidence that Levothyroxine treatment in Hashimoto’s patient with even normal TSH has a huge benefit of decreasing the autoimmune response and slowing down of progression of the disease as well as minimising the real risks of developing secondary autoimmune disease ( i.e. celiac disease, rheumatoid arthritis) and thyroid cancer.
Not sure if this is because of my TPO antibodies destroying my brain tissue or pure frustration and anger that for weeks now I can not do or think about anything else but the British unique TSH guidelines!
There are lots of anecdotal stories out there about a disastrous treatment of thyroid problems in UK. There is lot of endocrinologists fighting a war about the guidelines and failure to diagnose and treat the problem by GP’s.
Where is the evidence, that all the rest of the world is wrong and the outdated UK guidelines are single, unique, perfect and right? What are we going to do to stop this madness and give possibly millions of people their lives back?
Even without all the scientific evidence only by looking at my sister who is a picture of health and me – a half way sane person can tell which approach is right!
Competing interests: No competing interests
So, there you have it! The woman who wrote that letter is utterly fed up with the incompetent care she has received at the hands of NHS doctors. And I can concur with her assessment that many, many people are seriously mismanaged in this country, and it is not just in the endocrinology area. I am currently trying to get a patient properly assessed for tuberculosis, and her GP seem to have a major blind spot on this front, even though he just happens to be the ‘infectious diseases’ specialist at his surgery. He could not think what else to do that a chest X ray for my patient, even though I suspect, and have written to him, that she has lymphatic TB. You would have thought that anyone who has been properly trained in medicine has heard of ‘TB glands’, which is a form of TB of the lymph nodes, but no, not this chap. I, the Medical Herbalist, am having to teach him, the infectious diseases man, about such things. Shocking but true.
We pay vast sums of money into the NHS, and it is used by politicians as almost an Article of Faith, and yet I believe we are getting a very poor bargain. The majority of patients that seek my help have been left in a worse position by their doctors than if they had never seen them at all. They are given inappropriate drugs, or inadequate tests, or have their tests results misunderstood, or they have been ignored, or misdiagnosed or, better still, blamed. I’m not saying it is easy to diagnose correctly, and I can’t imagine being limited, in the way your GP is, and only allowed to used a narrow range of pharmaceutical drugs rather than the wonderful array of medicinal herbs that I have at my disposal, right here in my own dispensary. Accurate diagnosis can be very tricky, and I have not always been correct myself, but that is why I bother to spend the time really listening to my patients, with the result that I get it right far more often than not, (usually after a doctor, or many doctors, have failed to nail it). And then, of course, because the therapeutic means I employ are natural, very well tolerated and safe, the results are, in general, excellent!
Perhaps it is time for a rethink of how best to spend our health care money, and allocate it quite differently. We all need a good A & E department within rapid driving distance from our homes, but when it comes to primary care it is looking more and more like a stitch up, which is very disappointing, and dangerous.
Any thoughts you may have had on how to improve things would be welcomed.