Intolerance to all medications

[DebbieDysautonomia]

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!

[MikeO]

@DebbieDysautonomiaI would get POTS like symptoms while taking certain meds then other symptoms. I am taking Mestinon and while it has worked i am getting a sinking feeling i am not handling it well. BP's went up "drug related?" Either way some drugs make me feel really sick. Not sure if this is due to an ANS issue and loading up on the drugs due to digestive issues? but i do get this. 

[DebbieDysautonomia]

@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. 

[MikeO]

10 minutes ago, DebbieDysautonomia said:

thank you for your reply. It’s like being stuck between a rock and a hard place

No, I thank you for bringing this subject up is relevant.

[Pistol]

@DebbieDysautonomia - has anyone ever checked you for allergies to common preservatives or fillers used in medications? HPOTS runs in my family, and my mother ended up extremely allergic to EVERYTHING, including foods. She had to go on an elimination diet and had extensive food allergy testing. Her allergens included many foods, but her medication allergies were determined to be from addititves in the meds. She now is a lot better and can eat most foods and knows what meds ( or additives ) to avoid. I too have an allergy ot IV Cipro. I can take the oral form just fine but whatever preservative is in the IV form gives me hives. 

This is separate from my medication hypersensitivities from the ANS malfunction. 

[DebbieDysautonomia]

@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? 

[Pistol]

1 hour ago, DebbieDysautonomia said:

Did your mother get the testing privately or through an allergist? 

She had it through an allergist. Interestingly, she had to have her thyroid removed, both surgically and then radio-active. She is also on Thyroid hormones. I wonder if that maybe correlates?

[DebbieDysautonomia]

@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. 

[MikeO]

Oh great food may be setting me off. Kinda makes sense. started having more issues as i upped my food intake

[DebbieDysautonomia]

 

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! 

[MikeO]

16 hours ago, DebbieDysautonomia said:

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

I know the feeling have been dealing with this as well. Have you tried changing up your dosages? not saying it's the right thing to do but sometimes upping a med does have a bad reaction been thru this before. I would ask your Doc.  Also i would pay attention to the MFG of the meds you are taking if your pharmacy changes it up may affect how you feel. i have experienced this along with other folks that i know.

[JaneEyre9]

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.

[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?

[JaneEyre9]

My reaction depends on what I'm taking. It could be anaphylaxis from contrast dye or loose stools and cramping from a supplement or hives from an antibiotic. I have had many, many reactions over the years. I have to take a few supplements regularly, and I just had to do trial and error until I found more natural ones I could tolerate. There are some natural ways to help your thyroid. You may want to look into "The Root Cause." 

 

 

What did your doctor suggest to heal your gut? I had to make some major dietary changes and work on healing my gut lining. My signature has some of the things I tried. It was not an easy road, but it gave me some major improvements. Don't give up! You may also want to inquire about mast cell activation. I have not been treated for it, but I know some people here on DINET have had this issue.

[Chiara]

@DebbieDysautonomia  I don´t know if it could be helpful for you: I have a friend, she has a hyperthyroidism. She couldn´t take the medicine for this, so she went to a natural doctor. He set her on lycopus H 170, no additional iodine, no iodized salt, no seafood, fish, no soy,... Enough selenium, zinc, and Vit. D3+K2. It needed time, but in the end - after some month - she was able to manage her hyperthyroidism only with this medicine and diet-plans. Maybe there is a possibility for you too, to find a natural doctor, who can support in your case?