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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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Poll:POTS/hypothyroidism

wastwater

Senior Member
Messages
1,270
Location
uk
I select B,I would like to see if there is a divide and if anyone has both,and what symptom pattern it correlates with
I wonder if POTS people are more muscular symptoms and Hypothyroidism folk are more brain problems based.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia

Gingergrrl

Senior Member
Messages
16,171
I have both POTS and hypothyroidism (Hashimoto's disease) and my #1 symptom is shortness of breath combined with lung/diaphragm weakness and overall muscle weakness. I also have MCAS/mast cell disease. I do not have a lot of brain/cognitive symptoms. No idea if my answer is helpful or not!

ETA: I guess I would be a C1 and missed that part of the question yesterday!
 
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Chrisb

Senior Member
Messages
1,051
Borderline C. 3

About 2 years ago T4 was towards low end of normal. TSH just below normal range. Treatment with levothyroxine brought TSH towards middle of normal range but worsened symptoms to a scary extent.

Clear orthostatic hypertension. Some readings suggested marginal POTS. My GP suggested I acquire the machine to monitor BP but then seemed to regard me as a hypochondriac for using it to obtain results which did not accord with requirements.

I have been reflecting on at what stage my PVFS started to acquire the thyroid symptoms. I suspect it was at 12 to 15 years.

In the first 11 years when I still got to see a consultant endocrinologist he often commented that my BP was a bit high but he dismissed it as "white coat syndrome". I now wonder whether it was the early stages of orthostatic hypertension and if it was dismissed because he had results of 24 hour monitoring in hospital, which were normal.
 

Kati

Patient in training
Messages
5,497
What do you mean, muscle or brain based?

And agreed, you should use the forum poll tool
 

TiredBill

Senior Member
Messages
335
B2.

A little over a year and a half ago my fatigue worsened (it's been 33 years dealing with CFS). So with the benefit of more user-friendly insurance, I started pressing to see if there were any co-factors that could be contributing to my fatigue.

Among the things that were sub-optimal were my thyroid levels. FT4 was in the "normal" rage, but at the bottom of "normal." TSH was also "normal" but in the top of the range (depending on what accepts as a "normal" range).

If I wasn't feeling knackered I'm not sure the very conservative Endocrinologist I saw would have treated me. But I "self-advocated." It has been almost a year of slowly raising the dose of levothyroxine. I think I may have finally hit the "optimal" dose of 137 mcgs in the past weeks.

Optimizing thyroid levels has been helpful to me (but it has not solved CFS).

My symptoms have been mostly fatigue, brain fog, unrefreshing sleep, PEM, and in the earlier "viral-like" early phase symptoms included night sweats, swollen glands, photophobia, and crash-inducing chemical sensitivities (tobacco smoke and acetone being especially bad culprits). I've never had unexplainable muscle or joint pain, GI issues, or POTS.

Bill
 
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