Hi, I am in 2 minds about restarting T3. I want to restart it because I felt better on it but I don't want to go back on it in case my TSH goes suppressed and my endo discharges me and I am left with no guidance on dosing. The reason I am not taking it is because my endo took me off it due to him being a Levo only advocate. But surely if I need it and I feel better on it, then I should be going back on it? My GP has agreed I need it but I feel that I am having to please the endo all the time since he is the specialist. My symptoms have become so bad they are affecting my job and affecting my social life. I don't ever feel like going out and enjoying myself because of the cold weather affecting my joints and concentration and I live like a hermit in the flat, I am 32 years old.
Symptoms that went away on the T3/Levo therapy were constipation, dry skin, puffy eyes, tiredness, cold intolerance, headaches, memory loss, depression. I have heavy periods, since starting them at age 13 and lately they have become irregular. Developed sores on lips and in mouth.
Diagnosed 2012.
Current dose 150mcg Levo.
Thanks in advance and sorry if having a rant.
TSH 1.30 (0.2 - 4.2 mIU/L)
Free T4 19.2 (12 - 22 pmol/L)
Free T3 4.1 (3.1 - 6.8 pmol/L)
Written by
Jennmar1
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Jennmar ~ I cannot comment on what you should be taking, but it seems to me you are wasting your life away at the age of 32 for no other reason than to pacify an endo who has little interest in your health!
If your GP agrees with you and you knew what dosage of T3 you were well on, could you not go back on it and have regular private tests (costly, but worth it to get your life back) and to hell with the TSH, the Levo and the Endo?!?
There are many people on here to advise and guide you, so you wouldn't be alone. Many members have had to take control of their own health for the same reasons and you are way too young to be living like a hermit because of medical ignorance.
You're not having a rant, just telling a familiar, sad story ~ all too common on this forum. I think your GP sounds OK though so they may offer you support. I hope you get better soon, whatever you decide ~ I expect someone will come along and offer advice on vits and minerals soon.
Stick with any doctor that will prescribe the medicine that makes YOU feel WELL. That is the most important thing. The second most important thing is to avoid like the plague any doctors who are willing to pressure you into therapies that will harm you or reduce your quality of life.
I do think it's important to keep in mind that, as a hypothyroid patient, not all unpleasant symptoms will always be due to thyroid issues. However, if you know for a fact that you felt better on the T3, then take the T3.
I'll add the disclaimer that, of course, I'm no physician. But I am a hypothyroid patient like you, and I've been batted around between a dozen doctors without ever receiving the treatment I needed. Eventually, you just have to decide what you need to feel well and find a doctor who supports that goal and is willing to work with you.
I'm sorry to say but you are left with no guidance with or without Endo.
My past experience with them didn't get me anywhere. All they're good for is having more power to do more comprehensive blood tests than GP and prescribe t3. Which they are unwilling to do anyway.
You should do what's right for you and if you have a GP willing to prescribe t3 - consider yourself lottery winner!
When my endo told me to stop the T3 I was taking (was on a combination of T4/T3) that's when I decided to do look after myself.
I switched to T3 only and have been well on the dose and am symptom-free.
There's no point in doctors adjusting dose to fit the TSH into a level when it's not even from the thyroid gland at all. It's from the pituitary gland.
The blood tests were also invented for levothyroxine alone. Before that we were given NDT and dosed until our symptoms were relieved. That was much easier than trying to 'fit' our results into ranges which is for T4 alone, as far as I understand.
You say your GP agrees you need it. You feel better on it. Will your GP support you buying your own T3 and monitor you? If so then self source. If not, there are many members here experienced in combination thyroid meds who can support you and as long as you have a thyroid panel once or twice a year and keep your FT3 within range then there is no problem.
A suppressed TSH isn't a concern, it's a pituitary hormone not a thyroid hormone, and being low just means that the pituitary is recognising that you have enough thyroid hormone due to taking your thyroid meds.
Do not sacrifice feeling well just to please an endo who probably doesn't understand how to properly treat Hypothyroidism and hasn't a clue what it feels like.
There are some reputable suppliers of non-prescription T3 that members use so see if your GP will support you sourcing your own and you can ask for suppliers in a new post. Expect to pay around £60-70 for 300.
You never need to apologise for having a rant when you're just trying to get well and your Endo is advocating something that won't work for you! I'd be ranting a lot more if I could summons up some energy to do so...
First thing my Endo said when I said I was taking NDT was that taking any form of T3 TSH will be suppressed or even zero, FT4 can fall and FT3 should be high!
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