Hi there! I am new to this forum. I thought I’d add my first contribution relating my recent thyroid experiences which may be relevant to others going through a similar experience of “I’m full of symptoms by my GP says everything is normal and will not treat or refer”... I apologise in advance for the length of this…
I am from Spain but have been living in the UK since 97. I travel regularly to my country to see my family and have the opportunity to consult doctors over there. In December 2012 I went to see my GP in Spain for a general check-up and mentioned that, whilst I feel generally OK, I have been noticing that I feel strangely fatigued for no reason every now and then, I am struggling to keep my weight stable in spite of going to the gym every day (every day!) and keeping a very restrictive diet. I mentioned too that my hair seems to be falling out quite a lot and my nails are brittle. And I mentioned too that I went to see my GP in the UK about this, he did some generic blood tests and said “everything is normal”.
At the mention of my symptoms, my Spanish GP instantly said “sounds like you may have a Thyroid isssue, let’s check it properly!” and gave me two referrals: one for a blood test for a FULL THYROID PROFILE (including TSH, T4, T3 and the two types of antibodies, TPO and Antithyroglobulin), and one for an ultra-sound to have my thyroid examined.
These comprehensive tests are STANDARD procedure in Spain!
The blood tests confirmed that I have a slightly elevated TSH (6.2) and that my T4 and T3 are both at the very low end of the “normal” ranges. Most importantly, the tests confirmed that I have raised Antithyroglobulin antibodies, which means that I have an autoimmune condition (Hashimoto) and my thyroid gland is being attacked by my immune system and will gradually deteriorate. The ultrasound came with a report which confirmed a diagnosis of “autoimmune thyroiditis” (in other words, Hashimoto) and the dimensions of the gland came up as well below normal size, due to the progression of the condition.
With all this information, my Spanish GP referred me straightaway to an endocrinologist. Again, it is STANDARD procedure to refer to an endocrinologist for thyroid treatment. The notion of a GP treating this without referring to a specialist is unheard of…. even if repeated prescriptions may be picked up from a GP, it is always an endocrinologist who leads and supervises the treatment, not a GP.
The endocrinologist repeated the FULL Thyroid profile and this time the TSH came out significantly lower (2.3), however the test confirmed elevated antibodies and on this basis he said I should start hypothyroid medication straight-away without delay. He explained to me that during the early stages of autoimmune thyroiditis, it is completely normal for the TSH to fluctuate dramatically and in fact many patients can go through days when they a “hyper” in the morning (with palpitations) and “hypo” in the afternoon (with tremendous fatigue)… Eventually, as the disease progresses, the final result stabilises in the form of chronic hypothyrodism, but there can be quite a lot of going backwards and forwards with the TSH levels for a while, which is why (he explained) “it is not good practice to decide whether or not to start medication on the mere grounds of TSH tests”.
This endocrinologist suggested starting medication with immediate effect and wanted me back within 3 weeks to repeat tests and check levels and see whether the dose is adequate or needs to be increased or decreased. I explained that, since this is a chronic condition which will need this level of constant monitoring (at least in the early stages) I would have to transfer my care to the UK, where I live and can have regular check-ups, monitoring etc… Going to Spain every three weeks for blood tests and check-ups is just impossible for me. He was in agreement with my decision… Little did I know!
With all this background, I went to see my GP in London. He looked at all my Spanish tests dismissively and said he would have to repeat the blood tests here. I asked, “so will you be checking the same parameters? “NO” -he said- “we do not check for all these things in this country”. I asked, “what is it you will be checking then? “ “The TSH” he said, clearly annoyed at my asking. I had a blood test done in London and this time my TSH came as “only” 5.6. On this basis, he said, the result is “normal”, and he went on to say “there is no problem with your thyroid”. “But have you checked for antibodies?” I asked. “NO” -he said – “there is no need for that, we would only ever do something like that if your TSH was much more elevated, but at this point we would not do that, I suggest you come back in a year’s time”. “But what about the ultra-sound I had done in Spain which show the dimensions of my gland are abnormally small and the tests confirming antibodies?” I asked. To which he just looked at his watch and said “don’t worry, come back in a year’s time and if your TSH is higher we will look into treatment options…”.
I was furious!
Having done a lot of reading and my own research, I refused to accept waiting for a whole year while my health deteriorates and I have decided to seek help privately. I have had an appointment with a doctor in London also mentioned in this forum elsewhere) who is not strictly speaking an endocrinologist, but rather a functional medicine practitioner who has a reputation for treating thyroid disorders with a sensible approach, as he does not just deal with the hormonal medication required for management of the symptoms, but he also addresses the underlying auto-immunity disorder, which traditional medicine completely ignores. I resent having to fork out a fortune for this, it does not come easy to me and I am having to play around with over-drafts, loans, mortgage deferrals etc…
This Dr. reviewed all tests done in Spain and he was in complete agreement with the diagnosis and also suggested starting medication straight-away without delay. He mentioned to me that this notion that “until the TSH raises above 10 there is nothing wrong with your thyroid” which prevails in the UK is an aberration. A complete medical abomination. Elsewhere in the civilised world antibodies are tested for routinely and given that the great majority of hypothyroid conditions are due to autoimmunity, this is a much more sensible parameter on which to base diagnosis and treatment.
I have since been in touch with the kind endocrinologist I saw in Spain, who took an interest and asked me to let him know how my treatment goes and offered his guidance. When I explained my UK GP’s handling of my case he was mortified. He could not believe he would refuse to do a FULL thyroid profile (including of course antibodies!) and that he was happy to dismiss an ultrasound report confirming the abnormal size of my thyroid gland without instant referral to a specialist. In his mind this could be construed as overt medical negligence. I further explained to him that over here many suffering patients with obvious concerning symptoms are refused treatment “until Thyroid TSH is above 10” and he was even more shocked. ”But that is completely wrong!” he said.
I wanted to share this experience as I think it may be relevant to anyone else who is suffering from symptoms and is being refused treatment.
My advice is: if you have symptoms and your GP says “everything is normal” don’t just take it… Query it. Exactly “what” is normal and how do you define “normal”? Just on a point of principle, you should ask for a copy of every blood test you have done. It is a patient’s right to ask for a copy, they cannot refuse to give it to you (there is info about it on this web page). With a copy at least you know what has been tested for and what they are considering “normal”. With just a TSH test, there is simply no way of establishing what the state of your thyroid gland is. If you ask your GP to test for antibodies and he refuses, then I guess the only option is to have a FULL Thyroid profile done privately. There are labs which offer this service and you don’t need a referral letter to request a test, just so long as you can pay for it… I have even found a lab which offers a full thyroid profile test for which you can take your own blood sample (finger prick) send it by post and get results within 4 days… If you find out you have raised antibodies, maybe you can take the test results back to your GP and if you are luckier than I was with mine, he may then take you more seriously and suggest treatment or refer you to an endocrinologist?
Thanks everyone for sharing your experiences. I have learned so much from reading your contributions, so I hope this long saga serves as a wake up call for others.
edited by Admin - removed doctor's name.