Trying to warn people about potential risk of HRT in CFS, if you feel like reading

[gu3vara]

If you feel like reading, I'm discussing with an ardent believer that CFS is nothing more than hormonal imbalance and thyroid resistance and downplaying the discovery of XMRV. I'm just trying to warn test that hormone replacement could make CFS much worse for some, as it did with me, gzzzzzz!

http://forums.realthyroidhelp.com/viewtopic.php?f=2&t=19072

 

[IntuneJune]

ERFA thyroid???

What is that?

June

 

[gu3vara]

It's the Canadian brand of natural thyroid, I live there. Somehow, they all found a way to try it when they had problem of availability/potency with Armour thyroid.

 

[katieann]

I tried thyroid hormone therapy, with grave results. I am assuming that the extra level of hormones is candy for XMRV. At any rate, it destroyed my level of functionality. It had been up at about 20-25% of a human being, then fell sharply to about 10%. As usual, my brain couldn't figure out wat I had done differently in the last month (Up to 6+ weeks before I figured it out), until it dawned on me that this could be the cause. I went off it immediately. I am still not back up to par for me, but I am better. I figure I will pay up to possibly another 4-6 months for that huge mistake.

I don't recommend it. =p

 

[IntuneJune]

Is levothyroxine OK then? (Synthroid).

We cannot win, try to fix one thing, wham, get zapped someplace else.

June

 

[jeffrez]

I've researched this, and I believe it's because adding thyroid hormone puts an additional energy burden on the cells and depletes l-carnitine even further. Dr. Myhill's ATP profile test shows abnormalities in fractionated amino acids (creatine and carnitine) in CFS, and hyperthyroidism is also associated with significantly decreased carnitine. Dr. Cheney says T3 is the worst hormone you can give to a person with CFS. In my experience, that would extend to anything which might tend to increase T3, most notably T4.

 

[gu3vara]

I'm taking synthroid because I have no choice really, I have Hashimoto and my thyroid is broken, so I only replace with is missing and keep my TSH near 1, which is fine. But taking suppressive doses of Synthroid (or worst Armour) when you have real CFS (along with cortef and androgens), is a disaster waiting to happen. I started feeling HUGE fatigue and other symptoms on that regimen.

I'm better on synthroid only now, but those forums advocating large doses of armour, cortef and other hormones are dangerous for us with CFS. Problem is they have no way of knowing if we have real CFS or fatigue from thyroid resistance and they give treatment advices to vulnerable persons. I wanted to warn people of the potential risk of HRT and someone got pissed and minimize the reliability of the CCC definition, saying she had all the symptoms, but guess what, severe hypothyroidism cause similar symptoms, everyone knowns it. She had a case of thyroid resistance requiring massive doses of hormones to feel better, it's not my case, I feel hyper on a suppressed TSH quite fast. So she thinks because it worked for her, that it's the same for everybody and that CFS is thyroid resistance.

Bunch of crap, some people are damn stubborn, we DON'T have the same illness...!

 

[gu3vara]

What I find horrifying is that there is one person giving a lot of hormones to his kids who have autism like symptoms if I remember correctly. Cortef, pregnenolone, thyroid hormones etc... they aren't even teens and are on HRT, for god sake! Based on what, science? No way!

 

[IntuneJune]

Thyroid corrections

I'm taking synthroid because I have no choice really, I have Hashimoto and my thyroid is broken, so I only replace with is missing and keep my TSH near 1, which is fine. But taking suppressive doses of Synthroid (or worst Armour) when you have real CFS (along with cortef and androgens), is a disaster waiting to happen. I started feeling HUGE fatigue and other symptoms on that regimen.

I'm better on synthroid only now, but those forums advocating large doses of armour, cortef and other hormones are dangerous for us with CFS. Problem is they have no way of knowing if we have real CFS or fatigue from thyroid resistance and they give treatment advices to vulnerable persons. I wanted to warn people of the potential risk of HRT and someone got pissed and minimize the reliability of the CCC definition, saying she had all the symptoms, but guess what, severe hypothyroidism cause similar symptoms, everyone knowns it. She had a case of thyroid resistance requiring massive doses of hormones to feel better, it's not my case, I feel hyper on a suppressed TSH quite fast. So she thinks because it worked for her, that it's the same for everybody and that CFS is thyroid resistance.

Bunch of crap, some people are damn stubborn, we DON'T have the same illness...!

I am having problems regulating my thyroid, TSH was 25, now 11, and am due to have this repeated now that I have been on an increased dose of levothyroxine 125 mcg increased to 150 mcg. I am having drop-dead fatigue. Worse it has every been.

If the doctor (PCP) cannot get it regulated soon, I will move onto an endocrinologist. And have been reading about addresing T3, T4, Cytomel (sp? that does not look right to me).

Then I read your post. I did follow your link and thought you expressed yourself very clearly. And I agree with you, someone had an ax to grind.

On top of EVERYTHING we CFSers/MEers/FMSers--(whatever the label) must endure, we don't need a sluggish or dead thyroid to boot. It is in the sorting everything out.....we must be careful, the proper correction and you have shed some light in my direction for which I am very grateful.

Thank you, June

 

[jeffrez]

I'm taking synthroid because I have no choice really, I have Hashimoto and my thyroid is broken, so I only replace with is missing and keep my TSH near 1, which is fine. But taking suppressive doses of Synthroid (or worst Armour) when you have real CFS (along with cortef and androgens), is a disaster waiting to happen. I started feeling HUGE fatigue and other symptoms on that regimen.

I'm better on synthroid only now, but those forums advocating large doses of armour, cortef and other hormones are dangerous for us with CFS. Problem is they have no way of knowing if we have real CFS or fatigue from thyroid resistance and they give treatment advices to vulnerable persons. I wanted to warn people of the potential risk of HRT and someone got pissed and minimize the reliability of the CCC definition, saying she had all the symptoms, but guess what, severe hypothyroidism cause similar symptoms, everyone knowns it. She had a case of thyroid resistance requiring massive doses of hormones to feel better, it's not my case, I feel hyper on a suppressed TSH quite fast. So she thinks because it worked for her, that it's the same for everybody and that CFS is thyroid resistance.

Bunch of crap, some people are damn stubborn, we DON'T have the same illness...!

gu3vara, I agree totally, and that is interesting and good to know that you can take at least physiologic replacement doses of T4. I have Hashimoto's too, and even a small amount of T4 crashed me really badly the next day, which lasted for weeks, increasing skeletal and cardiac muscle fatigue greatly (the two things that one would expect to be affected by carnitine deficiency, what a coincidence ;-), i.e,. no adrenal-like brain fog or neuro symptoms, only greatly increased muscle and body fatigue).

I had tried a very small dose of armour before that and didn't notice the fatigue, but it severely worsened some of my other thyroid symptoms, including really bad sinusitis. I think I didn't take enough to really get hyper and therefore tax the cells, but that it only suppressed my thyroid more, increasing the hypo symptoms. But if I took large enough dose to start making me a little more hyper, I'm pretty sure it would crash me just like the synthroid. At least it very much stands to reason that it would, unless it was the burden of having to convert the T4 that caused the problem. But armour has T4 also, so in that case it would also likely just be a matter of time. It's a difficult situation when you have Hashi's and can't take anything.

 

[gu3vara]

If my experience can help other people like you June, I'm glad I wrote then

Mr. Kite : I can related to your problems taking hormones, I started taking Synthroid when I was still working but was ill for a year or two (not enough to not work yet). Each raises were horrible, never experience such awful fatigue in my life, then after a couple weeks, it was more normal. It then totally crashed my hypothalamus-thyroid axis, my tsh was elevated despite over the range t3 and t4, my endo was speechless and sent my back to my doctor (after ruling out pituitary resistance to thyroid hormone by test), saying something is way wrong. I was disabled 7 months after starting the synthroid. I'm quite sure it accelerated the ending, but that was going to crash bad sooner or later.

After a couple years, it didn't affect me as much anymore to change doses and my TSH finally started to make sense again, and now I can change doses without suffering much from it (except if I put androgens supplementation or T3 (cytomel or natural) in the picture, the effect is a true disaster.

I wouldn't touch T3 and testosterone with a 10 feet pole now, I had my lesson.

I might have been lucky enough to start synthroid before being disabled Mr Kite, perhaps that would have been much more difficult once disabled.

Anyway!

 

[Otis]

I wouldn't touch T3 and testosterone with a 10 feet pole now, I had my lesson.[\QUOTE]

Can't speak to well to HTR but testosterone knocked me down big-time, from working (barely) to complelly disabled. Given what I've seen about XMRV and androgens I would advise extremen caution with androgens. Pretty well convinces me that I have XMRV or something very similar.

 

[dschlindwein]

This links to a really lame report of a really lame study (not even worth reading) conducted by the Conspiracy to Deny and Conceal (CDC):

http://www.hqlo.com/content/7/1/67#B8

What's interesting is that they excluded from their CFS study anyone with untreated thyroid abnormalities. As I wrote in a different Forum thread, downregulation of thyroid hormones is probably your body trying to protect itself, trying to keep those of us with CFS from excessive physical activity (which need not be much activity) because physical activity makes us worse. In a roundabout way this can be taken as encouragement to treat CFS with thyroid hormone supplementation, and only when we either don't respond or actually become more ill, then permit us a CFS diagnosis.

Let us hope that the XMRV research changes all this nonsense about "correcting" hormonal insufficiencies in CFS (including not only thyroid but cortisol and sex hormones, too).

 

[gu3vara]

Have fun ready the new post saying McClure is such a great researcher for CFS

http://forums.realthyroidhelp.com/viewtopic.php?f=2&t=19072&start=15#p154856


I had enough...

 

[August59]

My testosterone dropped before I ever got sick and had to take it. I only use enough to keep it close to the normal range, but I feel much better with it than without. My TSH has been getting higher and higher till I had to start taking Synthroid 50mcg and my TSH is still between 3 and 4, but I don't want to take any more. I have no doubt that I would not be alive if I had not started testosterone therapy, but what makes me mad is my chronic pain from back trouble and subsequent opiate medication is what drove testosterone down (that is proven to happen some people). I'm like others - It's darned if you do and darned if you don't.