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BirdbrainedParticipant
I don’t know if it’s PCOS. My gyn ruled that out.. but then that was pre-EDS dx. I don’t have abnormal hair growth. I figured it was something wrong with the collagen in the functional cysts that didn’t allow them to rupture on schedule (when small).
Even tho my endo said there was absolutely no connection between the dermatographia and the thyroid function… I am still convinced. I had some remission of symptoms. Also, thyroid dysfunction does have impacts on the skin — dry, itchy skin.
BirdbrainedParticipantAlso… I have frequent ovarian cysts. They HAVE to be related.
BirdbrainedParticipantNo, I’m Hypermobility Type with POTS/NCS.
BirdbrainedParticipantYes! I am just now, after six years, seeing some resolution in mine. It started in 2005 during a very stressful job I had. I left and ended up in stressful job after stressful job. Until I left the area where I was living at the time, so close to all my family – which was another stressor – the hives were completely intractable. I was on up to 11 medications for allergies and allergy-related problems. H1, H2 blockers, antacids, severe GERD, esophageal spasms, dermatographia, pressure-induced angioedema, angioedema in the lips, around the waist, and the worst, palms of my hands and soles of my feet just from *standing*.
I tested positive for allergies to everything on the planet because they were sticking me with needles, LOL! What did they think was going to happen, exactly, if they poked me with a pen and I produced a wheal, if they then stuck me with a needle? I went to an allergy specialist in Houston who dx’d the dermatographia and sent me home with an even larger list of meds than I was already on. And STILL I had breakthrough symptoms.
I tied it to hypothyroidism, and on a hunch convinced my dr. to refer me to an endo. I had 16 thyroid nodules. He rejected the idea that the hives and thyroid were related but put me on levothyroxine to shrink the nodules. It id nothing for the nodules but it DID impact my hives, tremendously. My T4 levels were fine, btw. But my T3 was not, and my triglycerides were high, indicating an inflammatory response in the thyroid. Now I have no endo, no insurance, and only a NP who refuses to believe I even have a thyroid issue. SO I’m on nothing.
However… the hives are now easily controlled with a Zyrtec every couple of days or so. I don’t work any more, and I don’t live close to my family anymore = very low stress.
Also have POTS/EDS III and nearly everythign else you described in that paper you released a couple of weeks ago. It made me cry when you described getting up in the morning and how the CSF could be inhibiting it. You should see me walk like a drunk and run into walls and be groggy for the first 1-2 hours of every day..
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