Advice re new diagnosis of hypothyroidism

[Fogbound]

I've recently been diagnosed with hypothyroidism as a result of a partial thyroidectomy. I started Levothyroxine yesterday. I've had CFS/ME for about 10 years. Just wondering if anyone else has both conditions, and what impact it's had on functioning, etc.

 

[valentinelynx]

I do. I take meds to normalize my thyroid levels. However, I never noticed any benefit from doing so. Others may have had a different experience. I believe that hypothyroidism is quite common in ME/CFS patients, even without undergoing thyroidectomy. I certainly recommend taking the medication to keep your thyroid levels normal, as low thyroid can have severe adverse consequences. It may help some of your symptoms, but it may not. My personal experience with correcting comorbid conditions (things other than the ME/CFS) is that it doesn't help me feel better, but may prevent me from getting worse.

 

[Wishful]

I developed slightly elevated Tsh sometime during my ME. I noticed no effects from supplemental T4 or T3, but T2 (3-5 diiodothyronine) gave me temporary remission of ME the first few times, and then I needed to take one dose every 21 days to prevent an abrupt worsening of symptoms. Taking iodine worked just as well, since the thyroid gland turns some of that to T2. My response to T2 might be specific to me, but it is something you can experiment with if T4 doesn't solve all your problems. T2 has been hard to find lately (no longer popular for weight loss or bodybuilding), but there was at least one supplier online last time I looked.

T2 is pretty much ignored by the medical system, despite it being pretty important for some functions in the body, so don't expect advice on it from your endocrinologist. Read about it and decide whether it's something you feel might be worth experimenting with.

As for thyroid hormones and ME, I think it depends on the individual. For one person it might not have much effect, but for another, it might be critical.

 

[Fogbound]

Thanks for your responses. My concern is that having 2 conditions that cause fatigue is going to push my baseline down. As long as the Levothyroxine keeps me at my baseline, I can live with that. Like you mention, it depends on the individual how they respond to the medication, and only time will tell how I will respond.

 

[Likaloha]

I do. I take meds to normalize my thyroid levels. However, I never noticed any benefit from doing so. Others may have had a different experience. I believe that hypothyroidism is quite common in ME/CFS patients, even without undergoing thyroidectomy. I certainly recommend taking the medication to keep your thyroid levels normal, as low thyroid can have severe adverse consequences. It may help some of your symptoms, but it may not. My personal experience with correcting comorbid conditions (things other than the ME/CFS) is that it doesn't help me feel better, but may prevent me from getting worse.

I have been taking Levothyroxine for many years and also have not seen a difference in the overwhelming fatigue of my ME/CFS! That said, other people may have some positive effects!

 

[Treeman]

T2 (3-5 diiodothyronine) gave me temporary remission of ME the first few times

What dosage did you take and what supplier did you use? Thanks.

 

[Wishful]

What dosage did you take and what supplier did you use?

100 mcg. The first bottle was Thyrocuts 2, and when that was discontinued, I tried the "New! Improved!" version T2 Xtreme, which also included 100 mcg of 3-3 diiodothyronine, but which didn't work any differently. They were from San Corporation (www.sann.net), but they don't seem to offer any T2 products anymore. Amazon has a different T2 product listed, but it's unavailable. T2 was a fad for weightloss and bodybuilding at one time, so there were several products available. A quick check didn't find any now.

For me, a small drop of tincture of iodine was just as effective, so I assumed that my thyroid gland was converting enough of it directly to T2 to be equivalent to 100 mcg. I can't remember testing for the absolute minimum of T2 that worked for me, but I assume that I tried half the amount and found that was not enough.

180 capsules lasts a very long time at one per 21 days, so at one point I noticed that the T2 wasn't working. When I checked the bottle, it was I think 2 years past the expiry date, so I guess it had weakened over time. I think two of the aged capsules did the trick, for the next few required doses, and that was the end of that bottle. Since I couldn't buy more, I switched to iodine, which worked just as well for me.

T2 (or iodine) certainly kept me from much worse symptoms for quite a few years. I'm grateful that T2 was available at that time, and that iodine worked just as well, when the San product was discontinued.

In case it's of interest: when I first experimented with T2, the first capsule game me remission, but the symptoms started coming back over the next few days, despite taking one or more doses each day, until I was back to feeling my regular baseline symptoms. When I quick taking the daily T2, my symptoms worsened significantly, then gradually reduces at about the same rate as the improvement had tapered off. I think this was my thyroid gland reducing its production of T2 in response to the supplement, and then gradually taking up the load again when I stopped the supplement. 21 days after that, the symptoms abruptly increased again, and one dose of T2 'reset something' for another 21 days. Since my body was being quite clear about its demand for one dose every 21 days, I was happy to comply.

Oh, the first time I noticed an effect from iodine or any other thyroid-related supplement, it was 150 mcg of potassium iodide in a multivitamin/mineral tablet. Thus it didn't need to be tincture of iodine. The iodine atoms in T4 or T3 didn't work, although I think I never took 100 mcg worth. 50 mcg of T4 made my heart feel a bit odd (faster rate?), so I didn't experiment further that way.

 

[wyva]

I've recently been diagnosed with hypothyroidism as a result of a partial thyroidectomy. I started Levothyroxine yesterday. I've had CFS/ME for about 10 years. Just wondering if anyone else has both conditions, and what impact it's had on functioning, etc.

So have you noticed a difference? An endocrinologist just prescribed levothyroxine for me too. He says he gives a 5-10% chance that my symptoms are caused by hypothyroidism but the best way to be sure (and possibly to exclude it as a cause) is to try to treat it and see if it works.

 

[Wishful]

but the best way to be sure (and possibly to exclude it as a cause) is to try to treat it and see if it works.

The problem with that method is that too many doctors refuse to accept a lack of response to T4 as proof that it isn't a simple case of hypothyroidism.

 

[wyva]

The problem with that method is that too many doctors refuse to accept a lack of response to T4 as proof that it isn't a simple case of hypothyroidism.

I actually have high hopes for this doc. He looks quite open to the possibility of me having ME/CFS, he even included that in my medical record and that he has doubts about hypothyroidism causing my symptoms and that we have to explore other causes if that treatment doesn't work. He knew about mono causing chronic fatigue and overactive immune issues and wants me to take other, more specific blood tests later that might show changes due to ME/CFS. He is not an expert but seems more knowledgeable about this than the other doctors I have met so far. So I don't think that he will insist on hypothyroidism, he looks like he really wants to get to the bottom of it. And I'm quite impressed because this is the first time this happens to me since my illness started.

 

[Wishful]

He looks quite open to the possibility of me having ME/CFS,

Doctors willing to work with ME patients seem hard to find. You might get other members here wanting to know where your doctor's office is.

 

[sometexan84]

I do. I take meds to normalize my thyroid levels. However, I never noticed any benefit from doing so. Others may have had a different experience. I believe that hypothyroidism is quite common in ME/CFS patients, even without undergoing thyroidectomy. I certainly recommend taking the medication to keep your thyroid levels normal, as low thyroid can have severe adverse consequences. It may help some of your symptoms, but it may not. My personal experience with correcting comorbid conditions (things other than the ME/CFS) is that it doesn't help me feel better, but may prevent me from getting worse.

^^This^^

It sucks to have to treat something knowing it's prob not going to help. But yea, you have to in order to prevent further damage and future co-morbidities.

I too noticed zero improvement.

I did learn recently that hypothyroidism can cause Small Fiber Neuropathy (which can go by many different names), which can cause extreme fatigue and PEM. So you may want to check out the Cell Trend test - https://www.celltrend.de/en/pots-cfs-me-crps/

 

[wyva]

Doctors willing to work with ME patients seem hard to find. You might get other members here wanting to know where your doctor's office is.

Actually that is my exact plan but also including every doctor anyone finds in my country who is willing to deal with this. I seem to run the only ME/CFS Facebook page/group (or anything ME/CFS-related) in my country and I'm actually planning to make a list of all these more open-minded doctors and pin it on top of the group wall. So if anyone from Hungary is interested in this, the link is available from my profile.

 

[valentinelynx]

So you may want to check out the Cell Trend test - https://www.celltrend.de/en/pots-cfs-me-crps/

I did the CellTrend test a few years ago. I had very high levels of most the autonomic antibodies tested, both anti-muscarinic and anti-adrenergic. I think it is likely that I do have SFN, although my punch biopsy was negative.

 

[sometexan84]

I did the CellTrend test a few years ago. I had very high levels of most the autonomic antibodies tested, both anti-muscarinic and anti-adrenergic. I think it is likely that I do have SFN, although my punch biopsy was negative.

CellTrend has 2 new antibodies called TS-HDS and FGFR3, in the Small Fiber Neuropathy section at the bottom of https://www.celltrend.de/en/pots-cfs-me-crps/. Might consider those 2 if you haven't already. Though, a negative skin punch makes it less likely.

I've heard a normal skin biopsy doesn't necessarily exclude SFN.

Also, may want to see other conditions associated w/ your antibodies - https://forums.phoenixrising.me/thr...ns-infection-association-to-conditions.82700/

Dilated cardiomyopathy, Myasthenia gravis, etc

 

[max_yazhbin]

I've recently been diagnosed with hypothyroidism as a result of a partial thyroidectomy. I started Levothyroxine yesterday. I've had CFS/ME for about 10 years. Just wondering if anyone else has both conditions, and what impact it's had on functioning, etc.

I have hashimoto's whereby my anti-TPO ab when I first got that level checked was 51, at its highest was 190, and is coming down to 50 again. I had a full body MRI where it showed liver cysts and thyroid nodule. Thyroid nodule was biopsied and was a goiter. I have a liver biopsy in a few weeks. My ALT has gone to 120 4x in the last 3 years. Hopefully the liver biopsy will give some clues as to what is going on. My bet is on a toxin that I had from chernobyl, China, and/or mercury fillings. I did levo for a few days but it interfered with my sleep and didn't give me much anyways, thus I stopped.

 

[Fogbound]

So have you noticed a difference? An endocrinologist just prescribed levothyroxine for me too. He says he gives a 5-10% chance that my symptoms are caused by hypothyroidism but the best way to be sure (and possibly to exclude it as a cause) is to try to treat it and see if it works.

My symptoms of CFS/ME have improved, but it's hard to say whether it's related to Levothyroxine, or whether lockdown has played a role.