Thyroid Megathread

[frozenborderline]

Thyroid is incredibly important, as are all hormones. I agree with @Misfit Toy that imbalanced hormones can najecine incredibly sick.

But they are not the cause of ME/CFS, which is a multiorgan system disease frequently triggered by genetics and infectious agents.

In many of us, it has autoimmune features like POTS, MCAS, etc. And microbiome disruption, T cell clonal expansion, mitochondrial dysfunction, nutrient deficiencies, hypercoagulation, etc.

All of the above may disrupt thyroid function and hormone distribution and vice versa. But, it is highly unlikely that the thyroid is the toot of this disease.

I would never put forth a theory that I am definite on being right. I just present these theories as compelling, just as I would with other theories that may conflict that are compelling (naviaux's, among others).

Obviously CFS is a complex illness, and is usually initiated by an infectious agent. Metabolism is probably at the root of it, and metabolism is something that affects and is affected by almost every organ system and every illness.

 

[frozenborderline]

In short, I'm not sure that thyroid is the cause of ME/CFS, but all of these theories are interesting.

 

[Misfit Toy]

Yup, I agree Learner. It is interesting that my hyperthyroidism started right at the time that I had active EBV with fevers, etc. The EBV affected so many glands and just my whole system. But hyperthyroidism also made me nuts back in 1989.

I do not think my thyroid made me sick. Many on thyroid boards have tried to convince me it is what made me sick, but honestly since having it out, I am sicker. I think it was an immune system gone nuts. CVID underneath it all. Then an AI disease came later.

I will always think EBV was the main culprit.

 

[frozenborderline]

In short, I'm not sure that thyroid is the cause of ME/CFS, but all of these theories are interesting.

and in addition, etiology isn't as simple as identifying a primary cause. like naviaux says "heterogeneity of triggers, but a robust homogenous metabolic response".

 

[Learner1]

...and that response is far more than just thyroid...

 

[frozenborderline]

...and that response is far more than just thyroid...

Like I said earlier, I'm not a researcher, I don't claim to have a definitive theory. Just thought it would be good to make a thread compiling all the stuff on thyroid in relation to CFS

 

[Tammy]

I will always think EBV was the main culprit

I also believe EBV is the main culprit behind thyroid problems. EBV can lodge itself most anywhere in the body. My daughter developed thyroid problems (Graves) after getting mono. There have been articles written linking EBV to thyroid problems.

 

[frozenborderline]

...and that response is far more than just thyroid...

I don't mean to be myopic. There are lots of good theories out there, and only some of them involve thyroid. Given that I can't really try suramin or ampligen or rituximab, I am sort of at the end of my patience, which is leading to me expanding the boundaries of what i would consider acceptable risks and thus consider thyroid supplementation.

 

[Learner1]

Given what you've previously shared about your situation, it is likely you have far more than thyroid issues.

With that said, it may very well be worth trialling thyroid hormones, which may improve some symptoms.

I've found the attached framework to make a lot of sense in attacking our issues. My doctors have found and treated issues in each box in the chart, encompassing a good deal of complexity. I suspect that working the framework thoroughly would bring you further benefits than just focusing on thyroid.

 

[bertiedog]

I've found the attached framework to make a lot of sense in attacking our issues. My doctors have found and treated issues in each box in the chart, encompassing a good deal of complexity. I suspect that working the framework thoroughly would bring you further benefits than just focusing on thyroid.

I agree that this is the ideal situation but here in the UK its almost impossible to be treated in this way unfortunately. I was so very fortunate that I came across a private doctor who was a qualified Endo who helped a friend out who ran a health store by holding monthly consultations at very affordable rates. He took one's history very seriously and then ordered full blood tests for the thyroid and saliva tests for the adrenals to start off with. Obviously it was individualised treatment.

If it hadn't been for him I dread to think what my life would have been because the NHS consultant told me I didn't need any treatment. My blood tests were thrown out by mercury and nickel poisoning at that time which gave me a low TSH and yet free T4 at the bottom of the range which of course isn't normal at all.

I actually needed full replacement thyroid meds and also my adrenals were in such a bad state because I had been sick for so long that I needed a steroid, nothing else helped me. Its possible I had a mild Sheehan's Syndrome having had a huge blood loss in 1975 immediately after childbirth but I have recently found out I am a carrier for the 21 OH adrenal hyperplasia gene which might also have played a part.

If I had to rely on the NHS I think I would have preferred to end it all because I had no quality of life whatsoever but that was back in 2000 - 2002. Once I got on the treatment I felt like I had got my life back. Still I had issues with energy running out but I could feel quite well as long as I didn't do too much physical stuff but winter was always a problem because I seemed to pick up so many viruses. It's still the same now so definitely there is other stuff going on.

I guess we all hope that somebody like Dr Davis will very soon have success in finding out what is causing this blockage in our energy systems.

Pam

 

[Learner1]

Pam, I can appreciate the trials of your NHS, but here in the US, we are hemmed in by insurance companies, if we are lucky to have insurances. They decide what they will pay for or not.

My ME/CFS specialist is not in the insurance network, nor are many of the tests and treatments I've had, for which I have had to spend thousands of dollars out of pocket. And, if I had not gone to extraordinary measures, leaving no stone unturned, I would still be sleeping 16 hours a day and spending most of my time in bed.

I had Hashimotos to begin with, high reverse T3, and have been on an unconventional thyroid regimen for 8 years and still am still taking thyroid, even though conventional MDs are disturbed about my nonexistent TSH. The thyroid problem has changed character over time as I went through cancer treatment, for ME/CFS, and gone through treatment for ME/CFS.

But, though having my thyroid dosing adjusted has been helpful, it has had very little to do with treating my ME/CFS.

Finding that my immune system was dysfunctional, not only underactive, but with multiple chronic infections that caused autoimmune problems (POTS and MCAS), depleted nutrients, messed up my HPA axis, caused hypercoagulation, with treatment disrupting my microbiome, and attacking this Pandora's box of problems has greatly helped me improve and simplified the number of problems yet to solve.

Not everyone will have the exact components of this disease. But, as a patient, I found it fascinating that a doctor is never met or heard of put together a framework that explained the variety of tests my doctors had been running and treatments if been getting, well into this saga. And, it seems that many other patients have many of the same issues if their doctors would bother to look.

I will say that I've gotten a lot farther in getting tests and treatments paid for if the doctors used ANY ICD10 code, except for ME/CFS. Infectious mononucleosis, chlamydia pneumoniae, hypogammaglobulinea, bitten by a parrot, etc. each have ICD10 codes that can be used that go with diagnostic test codes and treatment codes that will help make progress.

I was impressed early on, funding the ME-Ireland's website putting a clinic with testing and treatment for ME/CFS. It lists many of the tests and treatments used here. Is there any way you all can advocate for what's on that list?

This is challenging to all of us, the best way to attack this is through good science and not being hemmed in by bureaucracy.

 

[Wishful]

CORE ARGUMENT

(1.1) Hypothyroidism is a disease with very variable symptoms, which can present in many different ways.

It is an endocrine hormone disease, which causes the metabolism to run slow. A sort of general systems failure. Which parts fail first seems random.

It is extraordinarily difficult to diagnose by clinical symptoms.

(1.3) The most commonly used blood test (TSH) for Hypothyroidism is negative in CFS/FMS

I'd like to point out that my metabolism doesn't seem to run particularly slow, at least not body-wide. My physical strength and stamina seem unaffected by ME/CFS. My brain might seem like it's running at reduced levels, but that doesn't necessarily meant reduced metabolic rate; there are all sorts of other explanations for that.

My TSH is elevated, so I can't see how you can say that the test is negative in CFS. Certainly not as a core argument. I haven't heard that the majority of ME/CFS victims have low T4 and T3 but normal TSH. That would be newsworthy!

I think that thyroid function may be a parameter affecting ME/CFS susceptibility or severity for some victims, but not a causative factor for all, or even the majority of. It might be a symptom of ME/CFS for some victims. If this is altering out brain cell functions, it's reasonable that it's affecting the hypothalamus and pituitary function too.

 

[frozenborderline]

I'd like to point out that my metabolism doesn't seem to run particularly slow, at least not body-wide. My physical strength and stamina seem unaffected by ME/CFS. My brain might seem like it's running at reduced levels, but that doesn't necessarily meant reduced metabolic rate; there are all sorts of other explanations for that.
.

I think this is unusual for CFS. The majority of patients' physical strength and stamina are deeply affected by CFS.

 

[frozenborderline]

Pam, I can appreciate the trials of your NHS, but here in the US, we are hemmed in by insurance companies, if we are lucky to have insurances. They decide what they will pay for or not.

My ME/CFS specialist is not in the insurance network, nor are many of the tests and treatments I've had, for which I have had to spend thousands of dollars out of pocket. And, if I had not gone to extraordinary measures, leaving no stone unturned, I would still be sleeping 16 hours a day and spending most of my time in bed.

I had Hashimotos to begin with, high reverse T3, and have been on an unconventional thyroid regimen for 8 years and still am still taking thyroid, even though conventional MDs are disturbed about my nonexistent TSH. The thyroid problem has changed character over time as I went through cancer treatment, for ME/CFS, and gone through treatment for ME/CFS.

But, though having my thyroid dosing adjusted has been helpful, it has had very little to do with treating my ME/CFS.

Finding that my immune system was dysfunctional, not only underactive, but with multiple chronic infections that caused autoimmune problems (POTS and MCAS), depleted nutrients, messed up my HPA axis, caused hypercoagulation, with treatment disrupting my microbiome, and attacking this Pandora's box of problems has greatly helped me improve and simplified the number of problems yet to solve.

Not everyone will have the exact components of this disease. But, as a patient, I found it fascinating that a doctor is never met or heard of put together a framework that explained the variety of tests my doctors had been running and treatments if been getting, well into this saga. And, it seems that many other patients have many of the same issues if their doctors would bother to look.

I will say that I've gotten a lot farther in getting tests and treatments paid for if the doctors used ANY ICD10 code, except for ME/CFS. Infectious mononucleosis, chlamydia pneumoniae, hypogammaglobulinea, bitten by a parrot, etc. each have ICD10 codes that can be used that go with diagnostic test codes and treatment codes that will help make progress.

I was impressed early on, funding the ME-Ireland's website putting a clinic with testing and treatment for ME/CFS. It lists many of the tests and treatments used here. Is there any way you all can advocate for what's on that list?

This is challenging to all of us, the best way to attack this is through good science and not being hemmed in by bureaucracy.

I almost laughed out loud at this part. But it's helpful to consider. I'll talk to my doctor about seeing what kind of ICD10 code we need for IVIG among other treatments.

 

[frozenborderline]

I almost laughed out loud at this part. But it's helpful to consider. I'll talk to my doctor about seeing what kind of ICD10 code we need for IVIG among other treatments.

maybe I need to get bitten by a parrot

 

[drob31]

is post exertional malaise a symptom of hypothyroidism? I have read that it is. If that's the case, there is a huge overlap with CFS.

 

[Learner1]

is post exertional malaise a symptom of hypothyroidism? I have read that it is. If that's the case, there is a huge overlap with CFS.

No, its not.

 

[Wishful]

I think this is unusual for CFS. The majority of patients' physical strength and stamina are deeply affected by CFS.

Yup, I have non-standard ME/CFS. Of course, we all seem to be non-standard...

My worst symptom is mental lethargy. Mental stamina is pretty poor too. The rest of my body functions seem unaffected. I'm pretty sure that the muscle aches are caused by cerebral malfunctioning, rather than muscle tissue problems.

This is why I don't favour research that focuses on the physical aspects of the disorder; I doubt that I'm the sole exception. I think that the (admittedly common) physically limiting symptoms of ME/CFS are the result of the malfunction, rather than part of the malfunction.

 

[frozenborderline]

“Pyruvate dehydrogenase complex activity was unchanged in the hyperthyroid state but was significantly reduced (by a third) in hypothyroid rats.”

https://www.ncbi.nlm.nih.gov/pubmed/489548


This shows a relationship between thyroid and pyruvate dehydrogenase, which is the thing found to be impaired in Fluge and mella's study


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

There is a possible relationship here, which is why I don't think some kind of complex (by which I mean not necessarily showing up in blood work or treatable by standard treatment) hypothyroidism should be ruled out as upstream of some of the metabolic issues in CFS.

@pattismith I thought you'd also be interested in this thread

 

[pattismith]

is post exertional malaise a symptom of hypothyroidism? I have read that it is. If that's the case, there is a huge overlap with CFS.

yes it is, I have a Low T3 Syndrome/State for 35 years, and I got this worsening of my symptoms after any exercise or emotional episode.