My thyroid issues are due to MS and being treated with an immunosuppressant some years ago.
I was told to decrease from 100 to 125 before lockdown in March because my thyroid seemed to be recovering, and so I decided to go down to 100 instead.
This was too low apparently because my TSH then went up to over 70. So they told me to go back up to 150. which I did four weeks ago. So now I have a test booked for next .Thursday which hopefully will help work out what is wrong,
I feel pretty strange but that can happen with me anyways. Also lockdown has just been reinstated in UK so that's disappointing.
Written by
fastandslow
To view profiles and participate in discussions please or .
A drop from 150 (? ) to 100 is a big one, it would have been better to reduce by a much smaller amount , ie. the 25mcg they suggested or even 12.5mcg.
A large drop like this will have had a big effect on how your body functions, mentally and physically. It may take more like 8/10 weeks on new dose for you to know how you feel now you are back on 150. (although the blood test will be representative of new levels after 6 weeks)
Did you feel unwell before they suggested the reduction, or was it just suggested based on annual blood test results ?
The usual reason for a suggestion of reduced dose is a TSH result that is lower than the reference range. often NHS do not even check the FT4 before reducing dose, but they should do.
Did you mean you were advised to decrease dose from 150mcg to 125mcg?
Do you have results from then
Frequently only TSH is tested which is completely inadequate
You may not have needed to reduce at all .....as demonstrated by following test results
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels
With MS you are presumably supplementing vitamin D
Are you taking any other vitamins?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Why do you think your thyroid condition is due to immunosuppresant treatment? Is it a known side effect? Have you been tested for thyroid antibodies and if so, what were the results?
I think it would be helpful if you had the FULL Thyroid testing done - TSH - FT4 - FT3 & Anti-bodies TPO & Tg. This is not carried out in the NHS - are you able to have Private Testing through Thyroid UK ? Testing kits sent to your home and results by email. Used by 100's on this Forum.
Also knowing your results for B12 - Folate - Ferritin - VitD is very important.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
So I am being referred to an endocrinologist...thank you for your help so far...what should I expect?
Thank you to everyone's advice and help, a great forum!!
My GP needs your help!
Happy dance time! Thanks to all your great advice
