Have been told by my endocrinologist that my bloods show I am highly sensitive To levothyroxine keep decreasing the dosage now on 75mcgs daily . Still suffer from hot flushing especially at night. Get days when I feel overwhelming fatigue . Have slight tremor and feel anxious for no reason . Been told there is no alternative . Going through sleep studies as he thinks it could be sleep apnoea.
Forgot to mention have Graves' disease and had RAI some almost 6yrs ago have never really felt my old self since .
Has anyone had similar experiences . Tempted to try T3 if I knew how to get some and find out just how much I needed .
Kind regards annie
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annie123
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I don't know of any tests that show 'sensitivity' to levo - whatever that is. I think your endo is talking out of his blow-hole. Can you post the labs that caused him to say this?
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, not to be mentioned to GP or phlebotomist)
Come back with new post once you have results and Ranges
Hi Annie 123, i know just how you feel I also had RAI 9 yrs ago and have never felt really well. When I had hot sweats and palpitations the GP thought I was over medicated and lowered my dose of levo accordingly and made me feel worse! After many years i have managed to get an NHS endo to prescribe me T3/T4 combo and am feeling quite a bit better thou still not 100% still think I need to get dosage right. Looking at a previous post of yours where your blood test results are your t4 is right at the top of the range and your t3 is below range so that suggests that you are not converting t4 to t3, in my opinion you need to get yourself some t3 but of cause I'm not medically qualified so it's just my opinion. Have you thought about the fact that its the brand of levo that your on thats not suiting you? I can't take the Teva brand as that gives me terrible palpatations also would suggest you get vitamins B12, Vit D, folate and ferritin tested and supplement where needed as we need our vitamins optimal not just in range. I also take vit C every day (haven't had a bad cold since I started doing this).
I agree with GG about your endo get a new one before he makes you very ill.
Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly
please email Dionne on Monday
tukadmin@thyroiduk.org
Roughly where in UK are you?
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
There's no such test as one that proves high sensitivity to Levothyroxine in the way your Endo seems to be implying; and to look at it another way, we need to be sensitive ie reactive, to the drugs we take otherwise there's no point in taking them! Sounds like an excuse for his treatment protocol not working ..... I suggest you post your blood test results with ranges so members can advise you.
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