Thyroid medication made me worse

[Andrew]

There are doctors who give thyroid medication in cases of CFS. Sometimes this can help, even if the lab tests are not technically below normal. Also, I think one woman here reported that she had a major heart attack because they ramped up the dose more quickly. I'm posting now to report my experience.

The doctor put me on Nature-Throid and ramped it up slowly. This was done during a time when I had just crashed during cancer treatment. IOW, I felt much worse than usual. I was on Nature-Throid for 3 years. Because of a problem getting the prescription refilled, I ended up being off it for close to two weeks. And during that time I started being able to stand up longer. The doctor agreed I was having a bad reaction to it. Also important to note, by conservative standards my blood tests didn't show me as low on thyroid.

Lesson learned. It's possible to end up on a medication that is making me worse, and not be aware of it. So now (where possible) I'm going to stop some others one at a time and see what happens. Not critical ones, though.

 

[Dainty]

Thanks for letting us know, Andrew.

I've read up on how dessicated thyroid supplementation may be needed even if levels do not show below normal, and for a time was excited that it might be "the" answer for me (you'd think I'd have learned by now...). I even got a hold of some but have not yet tried it and am not sure I will....my doctor said I would know if I was getting too much from hyperthyroid symptoms, and in the time it took for me to be in a good place to try something new I realized I'm already dealing with many of those. I don't think I'm actually hyperthyroid, but it seems that if I experience many similar symptoms on the list that hypothyriod is out the window and supplementation would make it worse.

I still might try it someday just to know for sure, but I'm wary right now of risking it.

I'm curious about others' experiences.

 

[camas]

That's a good lesson, Andrew. Would probably apply to supplements as well as medications. Here's my thyroid experience.

About five years ago I had a thyroid test that showed I was a bit low, so was started on a small dose of Armour. It helped my energy levels for a couple of years, but then I started feeling anxious all the time and wondered if it wasn't the Armour. I went off and my anxiety eased. I'd always thought that once you started thyroid that you were probably on it for life, but my doctor said that he's had a number of patients who only needed it for a short period. My last thyroid test was within the normal range. I'm at that age where all of my hormones are in flux, so I think that might well have had something to do with it.

 

[L'engle]

I tried armour for about a month, and felt better for a few days but had worse crashes from it so I stopped taking it. I guess the thyroid medication just wrings out even more from the fatigued adrenals, leaving them weaker.

 

[rwac]

Adrenal support

I've heard that you need cortisol to drive the thyroid hormone into the cells, and most people with under-active thyroids also have adrenal issues (AKA HPA axis dysfunction).

I have seen it suggested in several places that you need adrenal support at least in the beginning.

Any of you tried adrenal support like pregnenolone, cortrex, licorice, etc with the thyroid support?

I've been using T3 & pregnenolone.

 

[sandralee]

I too have had a bad experience with thyroid meds.

2 years ago I was prescribed T4, although all my thyroid measurements were technically in the normal range. The dose was ramped up slowly, and I was told that I would experience hyperthyroid symptoms if the level was too high. After 3 months, my mental function had deteriorated and my anxiety had gone through the roof. I didn't have any of the obvious hyperthyroid symptoms, e.g. increased pulse, sweaty palms, shaking hands.

After retesting, it was discovered that I was in a state of hyperthyroidism. My doctor had no explanation for this unusual situation and even consulted with other colleagues about it. The only explanation I was given was that T4 impacted on my CNS and somehow did not affect my peripheral nervous system.

I am slowly learning that even ME/CFS specialists are using theories based on normal physiological responses and applying them to some of us who have grossly abnormal physiological reactions.

Best wishes,

Sandra

 

[Sallysblooms]

I don't know why I waited to get on thyroid. My doctor kept taking tests, I kept needing it.... ha I am on it now, love it. I am using a tiny bit of that and cortisol. Both are great for me.VERY small amounts.

I am making sure to give my body all it needs. All hormones are balanced, etc. I support the body in every way I can.

I think the amount and kind you take is important.

 

[bishbosh]

I have taken thyroid meds for over 20 years because I have no thyroid. When I read about dessicated thyroid being far superior (apparently) to T4, I decided to try it. Bad, bad idea - I should have known better.

Armour makes me very ill. T3 makes me very ill. (FWIW: DHEA and hydrocortisone do the same, despite my apparently having adrenal fatigue). I spent a lot of time believing the anti-T4 hype before I finally decided to ditch it all and go back to what had once worked for me. So I guess the moral of the story is; you may need thyroid meds, but you may need to try different meds at varying doses to find what works for you.

 

[penny]

Because of a problem getting the prescription refilled, I ended up being off it for close to two weeks. And during that time I started being able to stand up longer.

FWIW, I had a similar experience. I was on a low dose of synthroid for 5 weeks, and noticed a decline in my activity level. Basically I wasn't getting up as much. When I stopped taking it, I immediately found it was easier to stand up and so I was able to do a bit more.

I didn't get any symptoms that seemed to be an indication of hyperthyroid.

 

[3CFIDS@ourhouse]

A doctor once explained it to me this way. Because of the damage to our mitochondria, our bodies have to "decide" how best to use limited resources. She said downregulating the thyroid and dropping body temperature are part of the compensations made. For many of us, even though our TSH may be too high or our T4 low, taking more thyroid hormone makes us feel worse. I believe Dr. Cheney found that T4 as well as adrenal hormones caused a worsening of diastolic function on echo. Of course, in CFS, there are few hard and fast rules, and some people may benefit from supplementation.

 

[FunkOdyssey]

Thyroid hormone replacement definitely made me worse. I had "subclinical hypothyroidism", a TSH hovering between 3-5 and low'ish free T3. I took thyroid hormone for a couple years and my health declined dramatically over that period. After stopping thyroid replacement, some symptoms improved (although not back to pre-thyroid baseline), and my TSH is back to a basically normal 2.8.

Lesson learned the hard way. I think Mary Shomon and the like have done serious damage spreading the idea that half the world has subclinical hypothyroidism. When you have a real problem like documented XMRV infection as I do, additional thyroid hormone ramping up oxidative stress is NOT what you want...