I developed severe exhaustion, pain, unable to barely walk and brain fog in Jan 2016 resulting in 6 months off work. In April due to being referred to ME/Chronic Fatigue Syndrome service at request of Occupational health my thyroid function was tested. My results were T4 @12 and TSH @5. The GP said I was borderline but due to my symptoms started me on 50mcg Levothyorxine. Within 2 weeks I felt a significant improvement though this did not last and nowhere near my normal self. I went back to work in August, not because I felt well enough to but as I found out I could be dismissed if I did not return! Anyhow that's another story....I have continued to suffer exhaustion, pain and flu like symptoms if I increase physical activity, subsequently I was diagnosed with ME/CFS last year, though this just means they cant find anything else wrong with me it has meant that I have had support from ME/CFS NHS service, which has been very good. My symptoms worsened again this winter. I have repeatedly asked GP if Thyroid still a problem and he repeatedly told me no my results normal, T4 19, TSH 1.4. Last time I saw GP he said he would re-check my bloods and may refer to endocrinologist. I decided to go privately at a cost of £200 for 45 minute consultation. He told me that the T4 was not really important only TSH result important and should be 0.1 - 1 ideally. I asked him about T3 and he said there was no point testing it as they could no longer prescribe T3 as it had been banned....
Anyhow had my thyroid re-tested and TSH 1.84 and T4 15, seemed to me my Thyroid function decreasing. The GP told me results were normal but when I said endo said TSH should be 0.1 - 1 he said I could try extra 25mcg thyroxine and retest in 8 weeks. The Endo also wrote a letter advising this. My blood tests also showed that my vit D was low. I'm gluten free and recently reduced dairy though still eat cheese. Hard to know which parts have biggest effect but I do feel better though still have every low tolerance of any physical exertion, I can only walk distances of under 20 metres and very slowly so long way from my normal active Zumba loving self! But back at work and a lot better than a year ago when I could hardly hold my head up for more than two hours and my brain was just a foggy mass! I am now back working 30 hours a week.
Also my brand of thyroxine was changed to Tevo two weeks ago and I seem to feel much better from taking that but that could be coincidence (could be reduction in dairy, increase in vit d and vit c intake, reduction in activity)!! The pharmacist said that all brands had been brought into be in line with each other and so shouldn't make any difference.
Has anyone else had this experience? Or any comments about TSH levels and no point doing T3?
The endo also said that I was likely to also have ME/CFS but when I read comments on here a lot of people seem to have similar awful symptoms and just diagnosed with Thyroid problems.
Thank you.
Written by
Dhalia50
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Welcome to our forum and I am sorry you have been led on a 'merry dance' as many millions appear to do nowadays.
Doctors are untrained in diagnosing hypothyroidism nowadays and all the emphasis has been put on the blood tests.
Unfortunately the truly remarkable doctors were all trained before the blood tests were introduced along with levothyroxine and knew all of the clinical symptoms and patients were provided with a trial of NDT (natural dessicated thyroid hormones) until all symptoms were relieved. If it didn't work, then another avenue was followed.
We have to read and learn and educate ourselves as most on this forum have done (myself included) and I wouldn't have been successful except for Thyroiduk.org.uk who is behind the scenes at present trying to change attitudes of many doctors whose 'compassion' seems to have been lost somewhere along the line. There wasn't a forum at that time.
CFS/ME/Fibro were only named (as far as I know) about ten years after the introduction of the blood tests and levothyroxine. That is because many of us don't fit into the modern criteria because our TSH doesn't rise high enough. In the UK you have to have a TSH of around 10 before diagnosis whereas in other countries we are prescribed around 3+.
Can you afford a private blood test (we have several labs) and get TSH, T4, T3, Free T4, Free T3 and antibodies?
Are you still on 50mcg of levo?
Re the tests above you can tell your GP that you have taken advice from the NHS Choices choices (Thyroiduk.org.uk) for dysfunctions of the thyroid gland who have recommended the above tests (highlight why FT4 and FT3 are required). He may do some then you can get the rest from the lab. Your GP should test B12, Vit D, iron, ferritin and folate.
The blood test has to be at the very earliest possible, fasting, and allow a 24 hour gap between your last dose of levo and the test and take afterwards.
If you are diagnosed with hypothyroidism I think your employer cannot sack you but others with better knowledge than me will respond to my comment.
Always get a print-out of your results with the ranges (we are entitled) from the surgery for your own records.
I'd discuss the latter two with the GP. Be calm, polite and put your case forward and say you have to get to the root of your symptoms as your livelihood is now in danger.
If you have sufficient 'clinical symptoms' give him this too.
Hi this is a response on your work issue. Firstly join a union. Ask for a meeting to discuss reasonable adjustments for your working day and flexible working arrangements should be put in place to support your health needs. Hope thats helpful.
From a patient point of view TSH is not the most important. The most important thing is Free T3. It is a far better predictor of symptoms (or lack of them) than TSH is. TSH doesn't make you feel anything. Low or high Free T3 will give symptoms. Each of us has a preferred level of Free T3. For you it might be 80% of the way through the reference range, for me it might be 70%. For another person it may be 50% of the way through the range. But doctors almost never measure it, so they don't even know if it is in range.
Saying that T3 has been banned makes it sound like it has become an illegal substance. But that kind of thing would require an act of Parliament, and that hasn't happened. What has happened is that the NHS had/has only one supplier of T3 and with no competition they raised the price and raised the price, over and over again, until it was about £250 for 28 pills. And the NHS eventually said it costs too much so we won't allow doctors to prescribe it any more. What they should have done is found another supplier, but that isn't the way the NHS works, sadly. They expect suppliers to go to them, not the other way around.
Quite a lot of people buy T3 online and import it without a prescription. It is a fraction of the cost abroad that the NHS has been getting charged. Doing this is legal, as long as you are buying only for yourself or your household/family.
The pharmacist said that all brands had been brought into be in line with each other and so shouldn't make any difference.
This is a nonsensical statement from a pharmacist. It is often not the active ingredient that makes people feel ill, but the other ingredients in the pill - the excipients and fillers - the ingredients that are required to turn the active ingredient into a pill.
It is some of the excipients and fillers that often make people feel ill. A common one is acacia. Most levo tablets contain acacia, but I think there is one brand which doesn't. If acacia happens to be the one causing a problem then taking the Levo which doesn't contain it might make life more bearable for the patient. If you can only tolerate one brand you need to ask your doctor to specify that when writing your prescription.
To have a chance of feeling better you need to know what your thyroid levels are, your antibody levels, and levels of your basic nutrients. Prescriptions aren't required to get supplements for nutrients. You can buy the kind you want at the dose you need in lots of places.
If you can afford it a private test is well worth doing. To do a private finger-prick test you can order one of the following tests :
Sorry left comment at bottom of wrong bit....Join a union so you have representation at work if possible. Ask for reasonable adjustments and flexible working arrangements due to health to be put in place to support you to stay at work. Good luck
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