New to this battle... an "international" thyroid story with a moral

New to this battle... an "international" thyroid story with a moral

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.

15 Replies

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  • Thanks for putting your story out there. Another sad example of very poor service and frighteningly so!

    Do hope something works out for you positively.

    x

  • ...all too familiar a story. So well told - thank you. I live in Greece so am fortunate to have the same experiences as you. Sadly not so for my daughters. One was tested here whilst on holiday and took her results and scan back to her UK GP. She was told here that the node required immediate attention. Her GP refused to look at her pictures and did his own blood tests and declared her 'NORMAL ? ' on more than one occasion . No scan. We eventually persuaded her to see an Endo privately and a FNA revealed she had cancer. The delay was not acceptable....and she has subsequently undergone two more cancer ops which they say has nothing to do with her thyroid !

    My older daughter was tested here last year and took her results back to the UK. She was eventually referred to a Professor of Endocrinology at a top Teaching Hospital in London and was told that her anti-bodies may indicate she will have thyroid illness in the future. I have a copy of the letter that was sent to her so I could see it - and yes I despair. It seems his speciality is Diabetes ! I have drafted a reply for my own therapy but it remains in Draft ! At 46 she doesn't need me to fight her battles - or does she ? My daughter prefers to think it will just all go away and that it is just stress that is causing her hands to claw up and for the pain to keep her awake. I do send her VitD and B12.

    Thank you again for sharing..........

    PS Both hubby and I have Hashimotos and all our TFT's are within range - so heaven knows how many people are suffering if they do NOT test for anti-bodies. All about money I guess. If all the sufferers were on T4 and the subsequent free prescriptions then it would bankrupt the National Health. If only they could think of it as Preventative Medicine and change the mindset - ah but that doesn't suit BIG Pharma does it ?

    Apologies for the rant !

  • I asked my doctor to test for antibodies in January and she commented that she could get into trouble for requesting it and wasn't sure if the lab would do the test anyway !

    I was glad when it came back positive but then disappointed when I was told that I wouldn't get any treatment until my TSH was near to 10 even with all the symptoms that I have.

    I know I wouldn't mind paying for a yearly prescription prepayment certificate like my husband does for his blood pressure tablets if it is the money that doctors are worried about.

    It would probably be cheaper to treat us all in the long run, as then they wouln't need to spend out on unneccessary tests and all doctor visits which all add up.

  • ...why would she get into trouble ? Did she explain why ? Auto-immune Thyroiditis is the most common thyroid condition throughout the world so you would assume it SHOULD be top of the list. I agree with you about all the hospital visits/tests for things that could well be prevented.

    I am sorry you have to wait until your TSH is 10. Any chance of you being able to self-medicate as some on this site do ? Just an aside - high blood pressure can also be a symptom of an Under Active Thyroid - has hubby been tested ? Was reading the other day that there are almost as many men as women suffering thyroid illness after the age of 60. The natural aging process means the thyroid becomes less efficient.

    Do hope you soon find help.

  • Hi Marz

    I am sure it was the cost of the test to the practice !

    My husband has had blood pressure problems for many years but never had thyroid tests but his mum has thyroid problems (hypo) both his parents suffered bp problems, his dad died years ago from a stroke. My husband will be 50 this year, he had his gallbladder removed when he was abt 22 so could do with thyroid been checked I suppose.

    I go back to see doctor in 2 weeks time and I hope she will do something for the thyroid then.

  • ..gall bladder definitely has links to UAT....Mums often pass down things to sons and Dads to daughters. You could use the family link as a reason for the test. Possibly his Dad could have been Hypo too - it is so common !

    Sadly GP's rarely do dot to dot and look at the wider picture. They rather give you lots of pills for different reasons.

    Have a look at the tags on this forum - for blood pressure - and I am sure you will learn lots.

    Back to the tennis from Munich !

    Hope all goes well for you....

  • Thanks Marz !

    I will keep your daughters in my prayers that they will get the help they need too.

    Take care.

  • Thank you....

  • I'm moving to Spain - cant believe the difference in treatments and, more importantly, attitudes.

    We, in the country, can only dream that one day our doctors will think like this.

    Great blog.

    Moggie x

  • This is a good story for the Scottish Parliament Petition ladies. Is it too late to submit?

    Thanks for sharing. Hope the mp connection makes a difference. Wishing you improvement, will you keep us all posted please?

    Mary

  • I think this is a good story to send to our English Parliment and the media ( maybe Daily Mail they like a good story ) .. infact I think we all need to write and send our stories to Parliment.

  • Thank you for sharing. How terribly sad that we can get it so wrong in this country.

    Foreversummer

  • Great post and well written.

  • Thank you so much for writing this account of your journey to get well. It just really shows up even more the pathetic treatment we get in the UK.

    Just how many people are out there getting seriously ill, and being told by British doctors everything is normal? It's a national scandal.

  • Really enlightening post, Chiquitita. Very reassuring to know that there's somewhere in the world that knows how to treat Hashimoto's.

    I'm now at the stage where I really need to find a practitioner to help me with mine. I'm not happy with self-medicating, I get too confused. Your functional practitioner sounds good to me. Can you - or someone - let me know which one it is on the list?

    Good luck with it all!

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