Hi I’ve not posted anything for a while , just need some advice and hope anyone here can help , I’ll be so grateful
Just seen e new endo this year , she’s freaking out because my Tsh is 0.01 , so she reduced my thyroxine from 100 to 75 and stopped my t3 10mcg , my hair started falling out really bad and I had daily headaches and felt awful . Had blood test done tsh is still suppressed and wants to lower my dose to 50 then get retested, I think that dose will be far to low for me
Free t4 14 (9-21)
Total t3 1.2 (0.9-2.4)
Tsh 0.01 ( 0.20 - 4.50)
She gave me my t3 back 10 daily , but don’t like the idea of reducing my t4 to 50 , I’m feeling very hypothyroid, she things I’m overdosed because of the Tsh
I was feeling fine before on 100 t4 and 10 t3
What do you ladies think . Do my results look ok ?
Will be very grateful for any advice
Thanks Sandra xx
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Sharon-1152
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You do not have to follow the advice of your Doc - especially when s/he is wrongly going by the TSH alone. When on thyroid meds the FT4 & FT3 tests and results are far more important. Your Doctor will keep you unwell ...
I would change doctors because she has no idea what she is doing if she is dosing by the TSH. The TSH is a pituitary gland hormone and it is the T4 and T3 that counts. No wonder your hair is falling out if she is reducing your dose. Sometimes I wonder if the treatment of thyroid disease will ever improve with these incompetent doctors in charge of our health.
I followed GP's advice for over 20 years (believing they were the experts) and ended up barely able to function, in desperation I found this forum ( and the real experts) and the answers that had eluded me for so long. I have a rare thyroid condition that medics still struggle with! I had to educate myself with support from brilliant members here and now self medicate!
I'm not suggesting this is your problem but instead, suggesting that you know your body better than anyone else. Listen to it.
Explain to her that you felt well on 100mcg T4 and 10mcg T3....and that is the aim of thyroid medication. She is supposed to keep you well.....not unwell, as is currently happening. Don't do what I did for years...instead, take control!
I despair at the way thyroid patients are currently being treated, it is tantemount to criminal neglect.
Thanks everyone for your replies really appreciate it , what worries me though is the fact that if I refuse to lower my dose and take my 100 t4 , I will run out of tablets , 🙄 she won’t prescribe me what I need x
They are scared of losing their licences if they don't 'toe-the-line' i.e. wait until TSH is 10 before diagnosing patient and then prescribing T4 alone. T4 being an inactive thyroid hormone that has to convert to T3 (the active thyroid hormone) needed in our millions of T3 receptor cells and brain and heart contain the most.
All of our vitamins/minerals need to be optimum too, i.e. B12, Vit D, iron, ferrtin and folate.
Suggest you look up this consultant....likely to see she’s a diabetic specialist
On almost any dose of T3 TSH will be suppressed...it’s irrelevant
The most important results are Ft3 followed by Ft4
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who understand this .....and will prescribe T3
tukadmin@thyroiduk.org
Essential to test vitamin D, folate, ferritin and B12
If any of these are low, then this also tends to lower TSH
Dramatically reducing dose, as you have recently been forced todo, will cause vitamin levels to crash
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, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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