Told I had Hashimotos, now being told I might not!
I went to see a well known private endocrinologist in Edinburgh last Sept. He diagnosed Hashis and put me on levothyroxine. I had no antibodies but my thyroid was multi-nodular. My TSH at that point was 5.9. To cut a long story short, he over medicated me and I ended up in A & E getting an ECG. He would not accept that starting me on 100mcg of Levothyroxine was inappropriate. I stopped taking Levo and my TSH crept up to 6.4 within a couple of months.
I resumed Levo at a lower dose and this time, I went to see a female endo at the same private hospital in Edinburgh. She was more interested in finding out which school my child goes to and telling me about her personal life. I’m not being unkind, I was so desperate for help and she just wasn’t interested. She didn’t even do the right blood tests. I told her that the Levothyroxine was like poison to me - it made me want to crawl out of my skin. She said that if I stopped taking it, I’d get very ill.
After much consideration, I decided to give up on seeing private endos, ditched Levo and started self-medicating with NDT.
As my symptoms are still ongoing (I’ve only been on NDT for a couple of months), my GP sent me to see an NHS Endo at the Western Hospital in Edinburgh. I saw him on Friday.
He’s saying that my original diagnosis of Hashimotos could be wrong! My symptoms of extreme fatigue, muscle weakness, brain fog and throat feeling constricted could be something else! He said that my TSH has always been in range as it was under 10 etc etc. Now, I know that a TSH of 5.9 and 6.4 is too high.
I’m so fed up and literally have no idea what to do next. I’m still taking the NDT, I’ve bought 4 bottles from the States. At the moment, my TSH is 0.85 (0.2-4.5), my FT4 is 10 (9-21) and my FT3 is 5.17 (3.10-6.80).
I don’t know what to do, do I give NDT 6 months? The NDT is certainly better than the Levo, I’ve had some periods of good mental clarity, am not as cold and not wailing like I was on Levo.
The last 12 months have been horrendous. What is wrong with me?! If endos can’t help, who can? If it’s not Hashis then what is it? The NHS took some blood tests and said he’d phone me this week.
Just want to pack it all in to be honest.