This has gone on for 22 years since RAI. Has this happened to any of you? I get hyper attacks and hypo attacks. I am euthyroid for about 3 days per month (or parts of these days) no matter what dose. I do not have Hashimotos; I had Graves, then RAI, then the search for a dose and type of thyroid that worked. Every day since 1992 I've written down the dose so I can correlate results and this helped me fine tune the dose sometimes, but it never stays right.
In these 22 years I have been on Synthroid, Eltroxin, Cytomel, compounded T3, Armour, and Erfa, and some combos of these. I live in Canada so other brands are not available.
I have tried various changes in diet and exercise and vitamins - everything - to no avail. At one point (1997-2006) I was on Xanax for the tremor and anxiety which I now believe was always thyroid, not mental or psychological, because it always came out of the blue no matter what the stress level. I gradually reduced it to nothing and took none for 6 years. Then this year my anxiety has come back and I have started taking Valium in a low dose, as needed.
After a severe and unexplained hyper attack on my long term 100-Eltroxin + 10-Cytomel in 2012, I went on Erfa for 2 1/2 years, patiently starting at 15 and increasing gradually to as high as 150, but I began to have very poor results with every dose, and the endo let me add some T4 (T3 always sky high, T4 very low; I thought that was the problem). I had blood tests every 3 months. Every time he changed the dose or type it still did not help. I even went to T4 alone for a while as I suspected the T3 in the Erfa was too high. Did not help. I still get hyper attacks on T4 alone, and reading my old notes, I did from the very beginning (late 1990s).
My usual pattern is: 2 hours after taking any dose I have a hyper attack (sometimes just heavy tremor, sometimes just increased heart rate, sometimes both). These last 3 to 7 hours on average. I live with it, but it often hampers my ability to function. It is huge amounts of adrenaline. But sometimes I am euthyroid all day, and have an attack at night, causing insomnia.
My cortisol test a few months ago was normal. My ferritin was normal. My endo gave me testosterone and Estrace to try, as he felt something else is causing the upheavals, but I don't feel any better with the Estrace and will not use the testosterone which has warnings on it that it's not for women at all. I get my blood test this week and see him after. My last test results in Aug. are as follows:
F T4 - 10.4 (10.5-20.0)
F T3 - 5.9 (3.5-6.5)
TSH - 0.64 (0.27-4.2)
On the day of that test (and I did not take the thyroid before the test),I had been taking 120 (2 grains) Erfa for 3 months, sometimes taking 60 when I was too hyper. His last recommendation was to take 60-Erfa plus 50-Synthroid. I did this since August, with a mixed bag of results - plenty of hyper and hypo attacks, leading to my not even knowing what I should take. Today I just took 1 1/2 grains (90) Erfa; no T4, and had the hyper tremor start about 3 hours later.
I am writing in this forum which I have read a lot for tips, in case someone might have a suggestion I have not heard of yet. I am grateful for any reply.