Multiple Symptoms...

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Lizzie46
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Joined: Thu Jan 19, 2012 2:41 pm
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by Lizzie46 on Wed Jan 25, 2012 2:00 pm

Multiple Symptoms...

Having been diagnosed with Crohns disease in 1973 and much later Fibromyalgia and CFS - about 11 years ago.... I was told at the age of 55 that I needed to exercise more to lose weight. I ran my own business ...played tennis twice a week and went distance swimming about 3 times a week...also walking at weekends. Was always exhausted but my positive approach to things enabled me to keep going....with daily power naps after work ! In 2005 I decided that my irregular heartbeat required further investigation - having been retired for two years - I thought my relaxed lifetstyle in Greece should have cured what I considered a stress heartbeat. When the GP here read my case history - a small printout from the UK - she asked if my thyroid had been tested. A scan was arranged for the next day - which revealed nodes and cost 8 euro - and the blood test revealed high anti-bodies - results in my hand two days later....and Hashimotos diagnosed with a kindly response from the Doc - ' welcome to the club !' So my question is - why did it take so long....and why in the UK is it that doctors do NOT review all the symptoms...it seems very clear to me that Gastroenterologists do not talk to Rheumatologists and so on and treat each symptom within their speciality only. We cannot blame GP's as they are guided by the Consultants with that all so important letter that we are not allowed to see and usually gets lost in the post ! And as for testing just the TSH - well what a cop out - and obviously cost again.

My husband at 72 has enjoyed good health but I have noticed symptoms of thyroid creeping in - as per the list on various excellent websites !....I added TSH to his annual bloods and it came back at 4.4 - of course in the UK he would have been told he was in range and that all was well. I knew better and the full profile was done....anti-bodies prevailed along with a VERY low T4 and T3. So much so the Haematologist faxed his results to an Endocrinologist and I later spoke with him and he commenced treatment immediately. So he would have been missed just like millions of others in the world. UNFORGIVABLE ! Patients are becoming aware that BIG Pharma prevails in treating all the conditions that can be caused by a deficient thyroid...cholesterol, heart problems, gut problems, need I go on !

Here it is very open and we retain our own medical details but there is certainly a much more empathetic approach and not the 'I know better than you' which I have experienced in the UK. I think there needs to be a rapid training course to alert GP's that patients must be listened to. We have a Haematology unit in the next village where we can pay for blood tests and also a scanning unit where I have my nodes checked annually....again privately but affordable as a pensioner. OK so costs are involved - but a full profile for Thryoid disorders and not just the TSH would SURELY save millions in the future - saving on all those tests for IBS and the full spectrum of female disorders, gall bladder, heart, lungs and so on. Surely all doctors know that with a low level of T3 all trillion cells in our bodies are starved of the energy to perform their myriad of tasks. Why is the problem worsening - well couch potatoes do not marry rock climbers !! I chose my second husband with care - do you like being curled up on the sofa with a good book by the fire ? !! YIPEE !!

Won't bore you with my daughter who was diagnosed here - but back in the UK her GP refused to look at her scan and test results. He declared her ' normal'....a FNB later revealed thyroid cancer and her life has been changed forever. She is now coping with a bone cancer which has been removed from her leg.....kidneys in Eastern Medicine are on the same meridian as the thyroid...and of course as you docs know kidneys are involved in the process of making bone marrow... I wonder. A good example of looking at the whole body....she is also on beta-blockers when she is possibly being under treated for the lack of thyroid hormones - T3 status unknown. Beta blockers known to stress the kidneys too. And so the beat goes.

Hope someone will read this somewhat long question/comment and that I will have a reply. Could write a book.....my Dear Mum was told to buy a wig when she lost her hair at menopause and died undiagnosed. Come on Docs lets get this simple illness sorted....and give patients the support they deserve. Working together has to be the way forward !

Lizzie 46 !

laladrew
Posts: 30
Joined: Thu Jan 26, 2012 7:43 pm
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by laladrew on Thu Jan 26, 2012 8:04 pm

Re: Multiple Symptoms...

Well said Lizzie!

I get so depressed at the complicated way things are (not) done within the NHS. I have been seen by cardiologists, endocrinologists, rheumatologists and so on, never do they communicate and you are left feeling alone trying to co-ordinate treatment for this illness. I even paid to be seen privately but it's just as confusing. The bottom line is, until the GPs learn more about thyroid and stop slavishly relying on blood results, I can't see the situation improving.

You are spot on about the cost to the Nhs for tests/treatments that in the end are unncessaary. I'm only early forties and expected to live like a pensioner taking beta blockers/tramadol/thyroxine/lactolose/amatriptyline/omeprazole/zopiclone. They said they would remove my thyroid and if I became underactive it was easily treatable with one little pill.

Hah!

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Dr Petros Perros
Posts: 59
Joined: Tue Jan 17, 2012 3:29 pm
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by Dr Petros Perros on Thu Feb 02, 2012 3:24 am

Re: Multiple Symptoms...

Dear Lizzy,

I agree that it is not difficult to diagnose hypothyroidism, if one listens to the symptoms, examines the patient and does the appropriate blood tests. To be fair to your docs in the UK, it may well be that you developed hypothyroidism after you had finished with them. I would be surprised if your thyroid had not been tested if you had attended gastro and rheumatology clinics. I am delighted that you praise the Greek health system. My own experience of it (and believe me I do know it well) is different. The data unfortunately show that it is very wasteful and I am sad to say the care is very variable. I am very proud of our NHS because I know it gives an excellent service at low cost. There are exceptions of course and we can improve.

The description of your husband's case is puzzling and what you describe suggests that he may have pituitary rather than thyroid disease. I hope the doctors who are treating him have looked at this possibility.
Dr Petros Perros
Consultant Endcorinologist

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Dr David Kerbel
Posts: 15
Joined: Wed Jan 18, 2012 4:53 pm
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by Dr David Kerbel on Sat Feb 04, 2012 6:07 pm

Re: Multiple Symptoms...

Medicine does not have all the answers.
I agree with Dr Perros that generally hypothyroidism is easy to diagnose & generally responds well to treatment.
If it doesnt respond then there may be a more complex explaination but often medicine cannot explain the problem.
There is now a term "medically unexplained symptoms" that often covers these scenarios.
I went to a talk on this topic at the Royal College of GPs and we now train medical students & GP registrars in Leicester an approach to dealing with these problems.
Obviously there arent easy answers or solutions but it is often good to have someone medical who understands, listens & sympathises even if they cannot help in a substantive way. In general medicine is not good at recognising its failings and limitations. Sometimes one has to accept symptoms and try to deal with them as best as one can. Often as a GP all I can do is support my patients. Actually we cant help a lot of things eg,congenital defects.
Dr David Kerbel
GP & GP representative for the British Thyroid Foundation

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