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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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!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.
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?
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.
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.![]()
He looks quite open to the possibility of me having ME/CFS,
^^This^^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.
Actually that is my exact plan but also including every doctor anyone finds in my country who is willing to deal with this.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.![]()
So you may want to check out the Cell Trend test - https://www.celltrend.de/en/pots-cfs-me-crps/
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 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.
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.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.
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.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.