DebbieDysautonomia

32 minutes ago, JaneEyre9 said:

You may want to look into leaky gut syndrome. I have POTS and multiple chemical sensitivity due to mold exposure. What helped me was healing my gut. I saw an MD through integrative medicine at the Cleveland clinic. My heart goes out to you because it's very difficult to find medications, vitamins, and supplements that agree with me.

@JaneEyre9Oh wow, I haven’t found anyone else so far with that diagnosis as well. Are there any meds you have to take like me? I can forgo everything else except thyroid medicine. I did see an integrative doctor early on and he said about leaky gut as well but the treatments didn’t help and I was out about $5,0000.  What are the symptoms you get from the multiple chemical sensitivity?

On 8/6/2021 at 8:48 PM, MikeO said:

upped my food intake

Yes! I can barely eat at times. And when I do I feel so full so fast. It’s unfair! 

@Pistolwas it due to thyroid cancer? Other than hypothyroidism and benign nodules, there isn’t anything wrong with it. My biggest fear is if it had to be removed now that I physically can’t tolerate any thyroid medicine. It would be a death sentence. 

@PistolI haven’t been tested recently, but I had been tested prior. Interestingly enough when we did think it was a filler issue, I had even been given liquid levothyroxine with no fillers and I still got the same toxic, ill feelings. I assume there is a food component as well, but have yet to figure it out. Most days I can barely eat and I still feel like this. Did your mother get the testing privately or through an allergist? 

@MikeOthank you for your reply. It’s like being stuck between a rock and a hard place. You are correct in suggesting a digestive issue. It’s almost like the medication builds up and doesn’t metabolize. 

Hello! First time posting. I have been ill for about 3.5 years and finally diagnosed with POTS dysautonomia this past March. I feel like something is still being missed even though every single scan and test checks out. I have always felt it is adrenal related but again all tests and labs come back normal. I feel like it is almost hPOTS, but my epinephrine and norepinephrine are always normal and, in fact, low. With this illness has come a complete intolerance to all medication. This has happened gradually, but now it is to the point that all prescription medication and  supplements and vitamins make me deathly ill with a toxic feeling. Yesterday I was given a diagnosis of multiple chemical hypersensitivity syndrome by an immunologist. It’s not a problem to stay off some meds, but I am hypothyroid and need thyroid medication to live a decent life, but that too makes me so incredibly sick. I’ve tried every brand, generic, compounded, T4 only, T3 only, a combination of both, and all of the NDTs. It doesn’t matter if I take a crumb or a full dose - the result is a toxicity. I’ve had every test and exam you can imagine and no reason ever shows up. Endocrinologists don’t know what to do with me. For awhile I was able to take a little thyroid medicine if I took an antihistamine with it or sometimes even a low dose steroid, but now that all makes me sick too. I’m told Multiple Chemical Hypersensitivity can come with dysautonomia, but has anyone else experienced this extreme intolerance to mediation? What happens when it’s a med you need like thyroid medication? Thank you!