A thyroid patient from the UK, and a member of Thyroid UK, reminded me of the ongoing travesty in the UK concerning the TSH lab test. And I thought it was worth revisiting due to its extreme absurdity. Quoting from www.brf-thyroid under FAQ, then Hypothyroidism, then Treatment:
The most sensitive indicator of developing hypothyroidism is a rise in the TSH result. Generally a TSH result of <5 is regarded as biochemically ‘normal’, a result of 5 – 10 is borderline and a result of >10 (in a patient who is not acutely ill) is regarded as consistent with hypothyroidism. The biochemical results have to be considered along side clinical symptoms, and together they determine the point at which the physician will introduce Thyroxine therapy.
Yikes. 5 – 10 is only BORDERLINE hypo?? What planet to they live on?? I have come across MANY thyroid patients on internet groups who have had a TSH below 3 with RAGING hypothyroidism, and for YEARS being told they were normal. Never, ever has the TSH been a “sensitive” indicator until it finally rises enough to reveal it.…but that can be YEARS in the making, and the patient is now living with adrenal fatigue to further complicate their ongoing hypothyroid condition. The TSH lab test does NOT work.
Then from http://www.british-thyroid-association.org/Guidelines/, and downloading the 2006 final version of the UK guidelines for the Use of Thyroid Function Tests , and reading 3.2.2, comes this:
The decision on treatment of patients with subclinical hypothyroidism should be guided by repeated TSH measurements. When TSH is elevated but <10 mU/L there is no consistent evidence of an association with symptoms, secondary biochemical abnormalities (hyperlipidaemia), cardiac dysfunction or cardiac events.
No consistent evidence of an association with symptoms?? Then what ARE those symptoms that thyroid patients have experienced over and over and over, even with a TSH as low as the 2’s??? And repeated TSH measurements?? There is a huge body of thyroid patients across the world who have had years of a NORMAL TSH yet raging hypothyroid symptoms.
They also add:
There is evidence of improvement in the lipid profile and symptoms when patients with modestly raised TSH (mean 11.7mU/L) were rendered euthyroid with thyroxine
Calling anyone “euthyroid” (normal thyroid-wise) on a T4 med, with an average TSH of 11, is so laughable that it stands on its humorous own.
The Dark Ages persist in the diagnosis and treatment of hypothyroidism. What a shameful, blind-sighted travesty! Are you from the UK and dealing with the backwardness? Talk to us by replying to this blog (and be patient – comments don’t always show up quickly.).
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Dawn said:
Nov 14, 08 at 1:49 pmI am in the UK, I am currently having to self medicate.
I became so ill with a weak diaphram and other symptoms of hypo that I spent many hours in distress laying on the futon in the living room (trying to spend time with the family) literally forcing my body to breathe and having a great deal of trouble doing so. Other symptoms like depression (given anti ds for it), hypertension, thinning hair, brittle nails, being cold, dragging my body along with great difficulty, excessive sleeping periods, insomnia, all the hypo signs and symptoms I had them.
I was afraid, I thought I was on my way out of life soon. I had so many symptoms of hypo even though my blood tests said I was ‘controlled’ on Levothyroxine that to anyone it should have stood out a mile that my medication was not optimised or the levo wasn’t working for me. However I was left because their blood tests said I was ok.
So much suffering, so much distress and so many wasted lives here in the UK through lack of knowledge about this very important gland and the way it operates in the body. Broda Barnes had it down, why do they not read him? Why do they instist on sticking to something which leaves so many people disabled and costing the country a fortune?
I don’t want to claim this money, I want to go out, be productive and get on with life. I cannot at the moment however until I have done healing which may take a lot of time as it took a lot of time for me to get this way. When I do get better I wonder if they will start to give me the tabs which got me better by prescription or if they will leave me self medicating? This could be very interesting.
Improving very slowly. Hope I got it in time.
No thanks to blood tests
God bless to all
Dawnx
HypoHell said:
Nov 14, 08 at 11:57 pmIf I lived in the UK, I think I would fly to a European country that did not require scripts to order my meds. I bet the high TSH range in the UK is responsible for heart attacks, high cholesterol, alcoholism (from the depression that comes with hypothyroidism), and a good number of people who are struggling with their weight.
I have 3 family members who are hypoT and none of us would have been treated with the UK’s or USA’s TSH range! Free T3 and T4 gave a whole different picture in terms of treatment.
Does anyone know which country has the BEST thyroid guidelines?
jmr said:
Dec 01, 08 at 10:31 amI was first diagnosed with hypothyroidism in February 2006, having had various symptoms (eyebrow loss, skin rashes, erratic blood pressure, shortness of breath, painful wrists and joints, tiredness, early menopause, acid reflux, etc. for the previous 18 months. In July 2005, my GP at that time said most of these symptoms must be accepted as natural signs of “getting older” since my blood test results were within the normal range). I felt so awful, I insisted on a further blood test in February 2006 which revealed TSH=59.26 and T4=0. I was put on 75 mcg of levothyroxine, which brough my TSH/T4 readings back within the normal range after a few months. I have never felt great on T4, then during the last 9 months I found the old symptoms getting worse again, in particular shortness of breath, blood pressure ranging from 185/125 to 69/59 for no good reason, acid reflux not controlled by medication, unexplained skin rashes that don’t heal, aching joints, etc. And sooo tired. My blood tests continue to be in the “normal range” and my specialist refered me back to my GP in August saying there was nothing more he could help with. I suffered food poisoning in Dubai two weeks ago and had a blood test which showed my T3 was below normal (why won’t they measure this as standard in the UK?!). I returned to UK and asked if I could be prescribed T3 to be told it is unavailable in this country and my dose of levothyroxine was raised to 100 mcg. But is it not true, I obtained a combined T4/T3 tablet last week privately. I have just started on it and hope it will work for me! Last week, results of a heart scan revealed early stage heart failure, which is distressing (my mother died from this. Yes, she had hypothyroidism too). I can’t help but feel that this need not have happened if only attention was given to symptoms instead of focussing only on TSH/T4. Does anyone please have any tips about controlling my heart and blood pressure problems? Most grateful if you do, thank you.
jmr said:
Dec 01, 08 at 10:51 amI forgot to mention that in 2005 — 2006 my weight increased by 1.5 stones. I slowly lost it during 2007, then this year the same thing happened again. And it is proving impossible to shift! I am usually slim, so this is a sure sign for me that something isn’t working as it should be.
Sarah said:
Dec 09, 08 at 9:09 pmLive in the UK. I just don’t know what to do, I feel too ill to fight this wretched problem. (I have Hashimoto’s) I managed to get hold of some Armour several months ago and was taking it under the supervision of my UK Endocrinologist, but he doesn’t agree with prescribing it! I had managed to obtain some Armour online, but now I can’t get it as they (the company I managed to get it from online) are having problems with their supplier. I really believe that I have benefitted from taking it, but now I’m running out of Armour and feel so resigned to my fate. I have a little boy, and I just want to be normal for his sake. I’ve recently had a virus and my thyroid is really hurting and I feel a lot worse again. I hate this bloody country.
ibeji said:
Jan 06, 09 at 3:42 amThe TSH test sucks. We all know this from our own experience.
But there are also some doctors who know this as well. We should make their views more widely heard and known.
Here’s an interview of MD PhD David Derry (conducted by Mary Shomon) who explains why the TSH test (and all its predecessors) sucks:
http://www.thyroid-info.com/articles/david-derry.htm
1bythesea said:
Jan 24, 09 at 9:28 amCould it be the UK raised the TSH range to reduce the cost of nationalized health care? It makes sense raising the TSH range would keep a huge number of patients off medication saving the government money. What a sad story for thyroid patients who are now doomed to feel lousy ALL the time.
I agree with HypoHell this will contribute to heart disease, high cholesteral, and depression. So if the goverment is having to pay for these, raising the TSH level will NOT save money and may actually contribute to higher costs.
Josie Murphy said:
Aug 15, 10 at 8:21 amI feel so sad now after reading all your letters. It reminded me how bad I was in 1996. But my doctor dismissed me because I had written my symptoms down on a piece of paper lest I should forget all by the time I got to the surgery. She wouldnt take the paper from me, and just said “I haven’t got time for that!” Needless to say I stumbled back out of the surgery. That Doctor was a female doctor in Oxford. Yet when I moved to Ireland and had to register with a Doctor, I was asked immediately if I would give a blood sample. This I did. When the results came back she said “Well, your results are as I expected, you have an underactive thyroid”. She then went on to tell me that she knew as soon as I walked into the surgery. The dry skin, slow speach, thinning hair and over weight. Why couldn’t the OXFORD doctor see that? I am now living back in UK but thankfully not in Oxford! However, my current doctor tells me they don’t think it necessary to test T3 in UK! So I have resined myself to being less lively than I would like. Afterall, I am now in my sixtys. But I hate to think that young people are suffering just because doctors won’t listen to these Thyroid sufferers.