Graves disease on top of ME/CFS

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Osaca

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I just got diagnosed with Graves disease on top of my very severe ME/CFS. Do any of you have any experiences on how treatment and possible medication of this disease influence ME/CFS?

Below are my latest blood results. My previous blood results had all been normal.

TSH my value: <0,01 mE/L; normal 0,4-4,2 mE/L
Free T3 my value: 11 pmol/L; normal: 2,5 - 5,1 pmol/L
Free T4 my value: 26,4 pmol/L; normal: 12,0 - 22,0 pmol/L
TPO antibodies my value: >3.000 kU/L; normal :0 - 60 kU/L
TSH receptor antibodies my value: 2,4 E/L; normal: 0 - 1,8 E/L
 
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Judee

Judee

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Did your doctor mention Hashimotos? I think with Hashimotos you can go from hyper to hypo and back. IDK.

I re-found this website recently: https://thyroidpharmacist.com/about-hashimotos/

(I don't know if she talks about that on her site. I found her looking for info on iodine. However, it's something you can research and discuss with your doctor.)
 
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Osaca

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Thanks for the reply! :)

No they didn't, but I'm aware that things can sometimes be more complicated. I just got the news today and the endocrinologist basically said on the phone "antibodies so must be Graves". I don't know if it would even by possible to find out if I go from hyper to hypo and vice versa due to my very limited ability to donate blood.

Apart from that there's some interesting papers on ME/CFS and Thyroids like this one that just came out: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4332223.
 
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Osaca

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Interestingly Graves disease is an autoimmune disease where a very specific GPCR-AAB attacks the thyroid. It is somehow B-cell medicated and a possible EBV involvement is hypothesised. Even though this disease has a very specific GPCR-autoantibody biomarker, one doesn't have the slightest idea of how the disease work.

I'm almost suprised that hardly anyone with ME/CFS has Graves as well.
 
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Osaca

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Hip said:
From some notes I made years ago on autoimmunity:

Royal jelly is beneficial for autoimmunity in Graves' disease. Ref: 1

Vitamin D is beneficial for autoimmunity in Graves' disease, if there is deficiency. Ref: 1

Graves' disease is a type II autoimmune disease on the Gell and Coombs classification of autoimmunity.
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Thanks for the info! I have to start treatment with methimazole from tomorrow onwards. Let's hope there are no ME/CFS relevant side effects.
 
Mary

Mary

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Osaca

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My previous blood tests that looked at TSH were taken in April 2022, May 2022 and October 2022. Thanks for the papers I'll have a look. As I'm already on medication now (methimazole), I'll have to see how that goes first.
 
Tammy

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Osaca said:
Interestingly Graves disease is an autoimmune disease where a very specific GPCR-AAB attacks the thyroid. It is somehow B-cell medicated and a possible EBV involvement is hypothesised.
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My Daughter had mono/EBV in high school. Not too long after .........she developed Graves Disease. I think it was the EBV attacking her thyroid.
 
vision blue

vision blue

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Osaca said:
.
I'm almost suprised that hardly anyone with ME/CFS has Graves as well.
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Perhaps thats because once youre diagnosed with Graves, you assume all your symptoms are from that.

Also raises question of how long the OP had thyroid receptor antibodies without knowing. Coukd it have predated allsymprons blamed on cfs

Dont different autoantibodies show up in graves and hashimotos? Been a while since ive looked at that.
 
vision blue

vision blue

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“The hyperthyroid stage of Hashimoto's thyroiditis can be distinguished from Graves' disease via antibody testing (the presence of TSI or TRAb will confirm Graves' disease) or via a Radioactive Iodine Uptake & Scan, which provides a snapshot of how the thyroid is taking up iodine. Graves' disease typically results in a high uptake all over the thyroid, with Hashimoto's thyroiditis resulting in low uptake.”

Your tsh receptor antibodies are elevated- but bonly mildly compared to your seemingly high tpo antibodies but those too can be graves- non specific olif graves or hadhimotod

Have you started tapezol yet? Dont let them do anything irreversible.

Surprised your tsh was tested 3 times in one year. Makes me wonder if younor they already suspected thuroid disease
 
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O

Osaca

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vision blue said:
Have you started tapezol yet? Dont let them do anything irreversible.

Surprised your tsh was tested 3 times in one year. Makes me wonder if younor they already suspected thuroid disease
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I have started Tapezol. They tested my TSH, because they tested all of my other values as well (as well as MRIs etc, I have the ME/CFS typical low cortisol and low lymphocyte values as well) to try to rule out anything else, which is necessary for an ME/CFS diagnosis. None of my symptoms are Graves related, nor do I have any Graves symptoms.
 
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pattismith

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Osaca said:
I have started Tapezol. They tested my TSH, because they tested all of my other values as well (as well as MRIs etc, I have the ME/CFS typical low cortisol and low lymphocyte values as well) to try to rule out anything else, which is necessary for an ME/CFS diagnosis. None of my symptoms are Graves related, nor do I have any Graves symptoms.
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don't you have hyperthyroidism symptoms?

Do you have your CD4 and CD8 numbers?

I had Grave's hyperthyroidism with anti TSHR antibodies.
At the same time I had SFN and antibodies against other GPCR (higher where anti AT1R and ETAR)

I couldn't tolerate methimazole, so I did a low iodine diet.
For tachycardia, I didn't tolerated betablocker but I did very well with Ivabradine (HCN blocker).

My Graves was fixed after 3 to 6 months, but I still have TPO antibodies...
 
O

Osaca

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pattismith said:
don't you have hyperthyroidism symptoms?

Do you have your CD4 and CD8 numbers?

I had Grave's hyperthyroidism with anti TSHR antibodies.
At the same time I had SFN and antibodies against other GPCR (higher where anti AT1R and ETAR)

I couldn't tolerate methimazole, so I did a low iodine diet.
For tachycardia, I didn't tolerated betablocker but I did very well with Ivabradine (HCN blocker).

My Graves was fixed after 3 to 6 months, but I still have TPO antibodies...
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Nope, no hyptherthyroidism symptoms (hair loss, hand tremor, increased appetite, weight loss, going to bathroom more often). Of course I have fatigue, insomnia etc. but I had all of these ME/CFS symptoms whilst thyroid values were still normal and not even the endicronoligst thinks my symptoms have much to do with hyperthyroidism. The only thing he thinks is possible is that due to very severe ME/CFS some symptoms might not be noticeable.

I'm only on my third day of methimazole, but so far I'm not reacting well to it. My Thyroid has become visibly enlarged and there's far more pressure in the throat region, almost reaching down to my chest, than it used to be. It's a strange feeling, as if it were to explode any moment if more presure was added but at the same time being strangled from the inside.

Unfortunately, I don't have my CD4 and CD8 numbers because doctors don't want to test those.
 
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vision blue

vision blue

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@Osaca i believe low cortisol cann go with high thyroid. I wonder if altered lymphocytes count could as well.

Really surprised to hear you have no classiv symptoms!! Did you havevany weight loss or heat sensitivity at least?

@pattismith goodhistory. Since you did have symptoms will Ask you what I was planning to ask osaks did The tachycardia and other overstimulating symptoms feel like having too much adrenaline or does it feel different? Very curious about that.
Also curious about what your symptoms were that kept you from tolerating Tapazol

I Come from a thyroid family So I’ve read about thyroid ever since I was a kid. Keep expecting mine to go off as well and docs always think my symptoms siggesr it but none of the labs have ever budged

Ps my message crossed with yours and i see some answers to what i asked...so wil eagerly read thru your message now. How is your memory btw?
 
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O

Osaca

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pattismith said:
the main hyperthyroidism sign is tachycardia at rest. Your heart rate is really normal?
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Yep, pulse of 72 whilst lying down (not sure what it whilst standing up, because I can't).

vision blue said:
Ps my message crossed with yours and i see some answers to what i asked...so wil eagerly read thru your message now. How is your memory btw?
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My memory I would describe as follows: Horrible. Very comparable to the early stages of dementia (my memory used to be extremely good and used to be quite necessary for my work).

@vision blue with your knowledge on Thyroid problems and connections to ME/CFS maybe you can connect some dots in the new Charite finding https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4332223. However, it isn't clear to me it the determination of SELENOP-aAb was done blinded or if these results will just end of being similar to the Celltrend test.
 
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