To get a referral to the Chronic fatigue clinic, I had to go back on Levo. I felt rubbish on it, so went back on to NDT without telling my GP. The Dr at the clinic seemed sympathetic to the idea that the TSH test wasn't a clear indicator of metabolism. A TSH test done in March was low : 0.02. I did what I was told, and went back on Levo. Now the clinic wants me to have another test done, but I don't know how to make it look 'normal'. As far as I'm concerned the test is a waste of time and an insult to patients who lack energy like me, but the test is normal year after year.. I've heard that it's best to not take NDT before the test..
Thankyou
Written by
Jackie101
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It is advised to have blood tests as early as possible, fasting (you can drink water) and also to have a gap of approx 24 hours between last dose and levo. Some of us feel best with a TSH of 1 or below and some also need a suppressed TSH.
How much Levothyroxine you are taking will determine your TSH level. If TSH is below range you will need to reduce your Levothyroxine dose and if TSH is over range you will need to increase your Levothyroxine dose.
Thankyou. At the time of the test I was on 3 grains of NDT then after that I went back to 150mcg levo.Im now on 2.5 grains of NDT and have also gone off HRT as I discovered estrogen attaches itself to the thyroid molecule and inhibits it.
Both 150mcg Levothyroxine and 2.5 grains NDT are likely to be TSH suppressive doses. If the aim is to target TSH in normal range you will probably have to reduce either dose substantially.
If the aim is to feel well on thyroid medication TSH should be ignored and dose guided by FT4 and FT3.
Why do you want to make your TSH look "normal"? Whatever it is, normal or abnormal, if you are being treated by doctors they should treat you accordingly. I wouldn't worry about it
Your TSH test at 0.02 was fine and they shouldn't adjust dose according to the TSH. The mistakenly believe we will have heart problems but giving us too low a dose might well do.
Ask louise.roberts@thyroiduk.org.uk for the Dr Toft Pulse article that explains that some people need low or suppressed TSH and/or over range FT4 to feel well and show it to your doctor. Dr Toft used to be the president of the British Thyroid Association.
Why did you wnat a diagnosis of CFS? that just means they can blame everythign on it and not treat you. Plus the CBT and so on that these clinics usually do in the UK has been debunked because of faked test results. But neverthelessless it might work for you.
If you felt better on NDT, I'd just go back onto it and forget pleasing the doctors.
Some people never get a TSH in the nornal range when they are anywhere near adequately medicated.
Blood tests should be done first thing in the morning, fasting (you can drink water) and 24 hors aftert the last dose of NDT or levo, or 12 hours after T3 only.
Thankyou for the info. I received a diagnosis in the post this morning - I hope it will help with benefits - I've been out of work for over 18 months.. so it won't really matter about the test. The whole system of of non treatment adds to the malaise. I'm going to see what's on here re cfs..
I totally agree with angle of the north. Don't rush for an ME diagnosis. Once labelled it is difficult to get the GP etc to see other issues.
I have underactive thyroid diagnosis and ME diagnosis. Everything is always blamed on my ME. The usual comment is "what can you expect with ME". It was only when I asked for B12 and Vitamin D tests that I found I was deficient in both. Apparently now these tests are required before an ME referal but not when I was diagnosed. After a year of B12 injections I find I improve after my injection but it doesn't last 3 month. My next step is to try to get more frequent injections
If you join the Pernicious Anaemia Society forum on HealthUnlocked they can tell you where to buy vitamin B12 ampoules and where to get info on self-injecting. And they may be able to help with arguments you can use for getting more frequent injections from your doctor, although I think it is very difficult to get anywhere with doing this.
Thanks humanbean . My doctor has conceeded 10 weeks so a step in the right direction but that was before she saw my blood test result. It was beyond top range as I am taking B12 sublinguals to try to help
Thank you for the info. I will ask my Dr if she will test for those vitamins as well. My TSH test has been 'normal' for over 7 years - it's pathetic they are still using it. The thyroid is only a part of the endocrine system..
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