I'll give a little background for those that don't know me. I've been an active member for a couple of years on this forum.
I was diagnosed with Hashimotos in 2008. 10yrs on Levothyroxine alone, but never quite became fully well. 5yrs of full thyroid tests showed that I do not convert Levo to T3 very well, my T3 levels always sat at 3.1 (3.1 - 6.8), so 0% through range, no matter what my FT4 level was and if my FT4 was lower in range 12 (12-22) then my FT3 would fall below range. I also had the DIO2 test which was Heterozygous
My TSH has never been extraordinarily high, I was symptomatic at 2.5, I was on my knees, crawling through sludge at 6.5, and finally diagnosed when it reached 10. I've only ever had one episode of my TSH reaching 14.
June 2019, I saw a private endo, recommneded from the lovely forum members and I thought he was going to be my saviour. He saw instantly from my results that I would benefit from adding T3. I was started on 15mcg (3 x 5mcg per day). My life was turned around, I got my life back, no more laying on the sofa, feeling that I was walking through a dream. After 6wks, the very few symptoms I did still have went when I increased to 20mcg per day. I took 10 in the morning,10 at night. I felt perfectly balanced. My heart rate rose from 45 - 55 beats to 68 - 75 beats pm.
For 2yrs life has been amazing, I continued to raise my 4 teenagers, went to college and started work.
Then at Christmas 2020, this Endo decided that my FT4 was too high and he felt I should reduce. I said I felt fine, but I would experiment. That didn't go very well and I found myself with hypo symptoms again. So I raised it back up to the original dose of 135mcg per day, with which I felt optimal. Then Aug 2021, I had covid, my worst symptom was lethargy, I had a week of wellness and then I had another virus which again floored me and I felt heavy and lethargic. So all in all I was ill for the whole of August. In Sept I was virus free but still feeling hypo symptoms. GP's were talking about long Covid, I said, nonsense, I bet this is thyroid. So I got my blood tests in Sept and the results were
TSH - 0.01 (0.27 - 4.2
Ft3 - 5.03 (3.1 - 6.8) 52% through range
Ft4 - 18 (12 -22) 60% through range
So I increased my t3 by 5mcg. So now I'm on 25mcg T3 and my Levo remains at 135mcg per day.
So now this endo says that he will not condone an increase because I am going to do permanent damage, down the line, I'm going to have heart issues and osteoporosis.
I asked why he thought that because my FT3 is only at 50%through range and so I am able to tolerate an increase and that since I've increased all the hypo symptoms that I had are gone. His reply is that because my TSH is suppressed I will have these problems.
He then said that he would quite happily refer me to another Endo because we're not going to agree on this but he cannot prescribe me any more T3 because he fears that it will do me harm and then referred to the hypocrite oath. (just found this typo but it seems quite apt, so I'll leave it in! lol)
So, I've been dropped for disagreeing and also asking for him to provide me with the evidence that a low TSH causes heart damage and osteoporosis. He said the evidence is out there.
My sister had Graves, I know what damage high FT3 can do, my mum is hypo, my Dad has low FT3, my dad has dementia- they call it Alzehemers but after 15yrs, we're only now seeing real problems with short term memory, ( I think its the low FT3) my Nan had hypo and died at 65yrs, I believe from under medication.
I'm so incredibly angry, someone who I thought I could trust, someone who I believe helped me turn my life around is now saying I'm over medicated and he will no longer prescribe! So in 2mths time, I will run out of T3 and my life will, once again, be over. How can these so called experts do this to us? When will it change? I hate them, I hate them all!