I Have An Allergy To T4- It's Been Documented.

Gingergrrl

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That would be great if you could get in with Dr Maitland - I hear good things about her on the MCAS boards.
Agreed and that would be awesome!

I have a mitral valve prolapse with regurgitation that may need operating on one day and I know I will never survive surgery, so I just try and think that I must carry on the best I can and hope to never need an operation. Can even get my teeth fixed currently.
@justy, I feel the exact same as you, that I would never survive a surgery. I currently have nine cavities and it is looking unlikely that I will be able to fill them b/c of the materials/dyes that the adhesives/bonding materials contain. I am starting to think I need to switch to a holistic dentist and this is my only chance.

Dr Afrin insists you cant be allergic to medicine - it is always fillers, but I disagree, my experience tells me I am allergis to some actual meds as I tolerate the same fillers in different meds.
I disagree with this as well and you absolutely can be allergic to a medication and not just to the fillers. This is why TMS (masto society) lists meds to avoid and meds that are generally tolerated including for dental work. It is just a guide and I actually am fine with some of the meds on the "No" list but I am allergic to others (like aspirin, NSAIDS, and several antibiotics).

I see a new MCAS Dr next week and am hoping she will be interested in my weird test results that my GP dismisses. My autoantibody test (ANA) Has gone up from a weak positive - 1:40 to 1:160, so still not very high, but only 3% of the population have this number and I am sick not healthy I also have consistently elevated IGM which my DR brushes off. Its all a big mess.
That is great and I hope it goes well with the new MCAS doc. I also have a positive ANA of 1:160 and consistently elevated IGM. I will be very curious to hear what you learn!

I don't have anything to say that will help you, but your experiences mirror a lot of my own and I KNOW what you are going through is real.
It is definitely real, and at least we can take comfort in knowing and validating that for each other.
 

Tunguska

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Yes, please do because I am not the only one. I talked to a woman tonight who doesn't have MCAS and has no problems with reactions to the medication but she is homebound due to the fact that the meds have never done the job of her thyroid. Many don't realize how much the thyroid controls. It controls EVERYTHING and it's not the same as being hypothyroid. We are euthyroid. We have no thyroids (thyroidectomy patients) and one can't live with out one and if the medication fails, you are screwed.
Weird coincidence you write that. I was just saying in another thread I don't respond to any thyroid meds so far, so I could end up exactly like her. Horrible situation.

Sincerely hope things get better for you.
 

justy

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I also have a positive ANA of 1:160 and consistently elevated IGM. I will be very curious to hear what you learn!
Do any of your Drs have anything to say about the elevated IGM and or level of your ANA titre? what is the pattern of yours? mine is speckled.

If the Dr I see has anything to say about them I will let you know for sure.I don't know what they mean for me - ive had autoantibody testing for lupus and RA - both ruled out, but never had any other antibodies looked for. Schirmer test for sjorgrens was negative on one eye and positive on the other so they said it wasn't that.
 

Misfit Toy

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Do any of your Drs have anything to say about the elevated IGM and or level of your ANA titre? what is the pattern of yours? mine is speckled.
Justy, I have no idea regarding tests. My test all come back normal for MCAS. I have the antibody to Sjogrens.

I don't know what any of this means yet. It's all so confusing. I hope this new doctor goes well and you get some answers. Like you said and I said before, I think THIS disease is the absolute worst. We could handle many or our other conditions if we didn't have so many reactions. I also think, that like you, I would have reactions to sub-q...just at a lower level. I was in so MUCH PAIN on IVIG. I honestly thought IVIG was going to kill me.
 

Misfit Toy

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I currently have nine cavities and it is looking unlikely that I will be able to fill them b/c of the materials/dyes that the adhesives/bonding materials contain. I am starting to think I need to switch to a holistic dentist and this is my only chance.
You have nine cavities? Do they hurt Ginger? I can't even imagine.
 

Gingergrrl

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Do any of your Drs have anything to say about the elevated IGM and or level of your ANA titre? what is the pattern of yours? mine is speckled.
@justy, My ANA pattern is "speckled" like yours and the titer is 1:160 (at least it was in March 2016, I have not tested it since). My main doctor felt the titer was reflective of me having 11 autoantibodies vs. some random coincidence or even a "false positive" like the rheumy said. I only saw the rheumy 2x b/c he was unable to help me. My main doc has never been concerned with the elevated IgM, not sure why.

If the Dr I see has anything to say about them I will let you know for sure.I don't know what they mean for me - ive had autoantibody testing for lupus and RA - both ruled out, but never had any other antibodies looked for. Schirmer test for sjorgrens was negative on one eye and positive on the other so they said it wasn't that.
I am negative for RA and lupus and never tested for Sjogrens but do not have the symptoms of it. I have Hashimoto's (and have been positive for the two Hashi's autoantibodies since 2013 but probably earlier) but my other autoantibodies are more obscure, although I think the GAD65 autoantibody is probably fairly common. I wish you could test for Cell Trend or paraneoplastic autoantibodies to see if you are positive for any of them.

Prior to IVIG, I had the muscle weakness of LEMS, and I also have one of the calcium channel autoantibodies that go with LEMS, yet I also fit partial criteria for other diagnoses, too. My two diagnoses with absolute 100% confirmation are POTS and MCAS and the rest are B-cell autoantibody driven per my doctor but overlap w/several different illnesses. I am like a freak diagnostically :D.

I was in so MUCH PAIN on IVIG. I honestly thought IVIG was going to kill me.
My very first IVIG in July 2016 was infused at WAY too fast of a rate and I got an excruciating headache/intracranial pressure that by the 10th day, I went to the ER and was given Decadron infusion to reduce the pressure. Ever since then, my MCAS doctor reduced the infusion speed so it takes a minimum of 6-7 hours. So each infusion is an all-day production but I have never gotten a headache like that again and I had IVIG every three wks for 10 months. Infusion speed is absolutely critical in someone with MCAS to avoid third spacing and pulmonary edema (of any fluid, not just IVIG) but especially w/IVIG b/c it is a very thick substance and a slow infusion speed reduces risk of blood clots, too.

You have nine cavities? Do they hurt Ginger? I can't even imagine.
I have absolutely zero pain and would not even know that I had cavities if new dentist did not tell me. I had a great dentist but he retired and his son took over his practice. His son was terrified to treat me b/c of MCAS and basically fired me as a patient and said I could only do dental work in a hospital (which was insane b/c my MCAS has been in remission for 10 months). I think he just did not want any liability if I had an allergic reaction but the reality is that any patient could have an allergic reaction to dental work and you cannot predict vs. I would be taking every precaution known to man and had done extensive research.

So I found a new dentist who I really like and she is the one who said I have nine cavities. The guy who fired me said I have five but he really was not thorough like new one. I have no reason to believe she is lying and I had not seen a dentist in over two yrs b/c my MCAS had been so reactive (prior to IVIG) that it was not possible. Now it is possible and I did a test of the anesthesia w/her recommended by TMS (masto society) and was not allergic. However, the dental adhesives/fillings she uses have yellow dyes (which I am allergic to) so I need to figure out what to do. I got the MSDS (material safety data sheets) thanks to another member of PR and e-mailed them to my new dentist to see how she wants to proceed. I also contacted a holistic dentist and hoping for a call back. Am hoping this info is helpful to you or Justy and I have a whole thread about it where I explain more.
 

Sancar

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[QUOTE Gingergrrl, the dental adhesives/fillings she uses have yellow dyes (which I am allergic to) so I need to figure out what to do. Gg how did you find out that there was a "yellow dye" that you would be allergic to? How did you know that you were even allergic to that type of dye? That's impowering information to have in your arsenal.

I had 2 filings done a month ago and I was bedridden, unable to move for a week after. I wonder if that might have been an allergic reaction or simply the stress of th dentist. ?
 

Gingergrrl

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Gg how did you find out that there was a "yellow dye" that you would be allergic to? How did you know that you were even allergic to that type of dye? That's impowering information to have in your arsenal.
@Sancar I found out that the materials my new dentist uses have a yellow dye b/c she told me that the adhesive/ bonding materials have a "yellow tint" and even the filling itself had a "tooth colored tint". Every med that I take is "dye free" b/c I had anaphylaxis to Yellow #5 (Tartrazine) in a candy in early 2015 and shortly after to a red food dye. Even though I have not had a reaction to a food or smell in ten months, my MCAS doc told me to avoid the dyes to be safe.

I'm pretty sure if I were to ingest a tiny amount of dye with pre-meds, I could manage it now but to have materials in my mouth for the rest of life w/these dyes would trigger a massive histamine reaction that would be very dangerous for me and reverse my MCAS remission. I do not yet know specifically what kind of dye is in the products b/c the MSDS Product sheets are very vague. I am okay with iron oxide dyes but allergic to FD&C or Azo dyes. So at present, I cannot do the dental work until I can get more info.

I had 2 filings done a month ago and I was bedridden, unable to move for a week after. I wonder if that might have been an allergic reaction or simply the stress of th dentist. ?
It is so hard to say. If the anesthesia had Epi, you might have reacted to that or you might have been allergic to something in the materials.
 

Iritu1021

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Thank you for sharing your experience. I have some nodules in my thyroid that are being watched. It sounds like the risk of slow growing cancer is not worth the risk of getting thyroid removed for someone with our condition so I might not even follow up on them to avoid permanently messing myself up.
Being on T4 really messed up my immune system. I have made an interesting connection between recently discovered thyroid hormone metabolites TA and histamine regulation of mast cell receptors which I wrote about here:
http://www.chronicfatiguediagnosis.com/2018/02/26/t1am-and-histamine-connection/
You guys seem to have open-minded doctors so maybe you can share with them so it gets more attention in the medical sphere.
Also, in our recent thread here on T1AM (3-iodothyronamine, a TH derivative) another member shared a new mathematical model SPINA thyroid calculator which was rather eye-opening.