The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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I Have An Allergy To T4- It's Been Documented.

Discussion in 'Thyroid Dysfunction' started by Misfit Toy, Jun 4, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I am posting this here because I am hoping someone who may have an allergy will find it on google. Many know this, so forgive me if I am repeating myself, but I need to post again.

    In 2016, February of 2016, I had my thyroid removed due to what they thought was cancer. I had never been on thyroid medication in my life but was quite fearsome regarding this as I have all kinds of allergies and sensitivities to medications.

    I was put on NT, an NDT and had a reaction. Could never get above 1.5 grains. I was then put on Cytomel or T3 only and never could get above 68 mcg at the time. When you don't have a thyroid, you need about 100 to 150 mcg of T3. It's a fast acting medication and any stress in your life or system can deplete the T3. With T4, you always have T3 in your system, which is why I find being on T4 a bonus.

    I went on T4 with the T3 and initially felt better, but developed a wicked rash, pain, you name it.

    I went from one form of T4 to another. I had T4 compounded with Magnesium Stearate, then Microcrystalline Cellulose, then Loxoral, then Leucine. None of them could I tolerate. I was never on synthroid as I am allergic to milk, or lactose. The fillers that were tried with my T4..were all tolerable. I never had problems with any of the fillers. I can take Loxoral or Mag stearate. It was always when they added T4 that was an issue. I am on lots of medications with fillers. I am on Klonopin and the pill is green. I take Fioricet for migranes, the pill is blue and I am fine on it. I take Zyrtec, Ketotifen and I am fine on these meds...I take Pepcid..they all have fillers and I am fine. I take Resoril as needed; I am fine. I don't have a lot of problems with many fillers.

    From August of 2016 until December of 2016, I was on T4 of some sort. Even though in many ways it gave me more energy, I had an awful rash everywhere. I kept hearing from every doctor, it is impossible to be allergic to T4. I didn't know what else to think and stuck with it until we raised it to 60 mcg of T4. With 60 mcg of T4, I could not sleep one wink, my rash was all over my body, I had awful pain everywhere, I felt like I was on speed and my adrenals were nuts. My heart was flying. My doctor thought I was hyper and I said, "How is that possible? I am on 60 of T4 and 25 of T3! That is nothing." That is not possible and bloodwork showed I was anything but hyper.

    I went off of T4, rash got better but never completely went away, but was much better and my system calmed down.

    As time has gone on, I have developed POTS due to being hypo. I am constantly throwing my neck, or lower back out and every doctor I see says I need to get my thyroid treated. Well, that's just great. "Your POTS won't get better without T4." That was a doctor at U of Penn.

    I am in PT twice a week due to what this is doing to my bones, my body, etc.

    I had desensitization to T4 last week. My doctor consulted with an allergist who had done this for another patient who was in the same situation. It's called Rapid desensitization. Afterwards, I started on T4 at just 5 mcg. After only one pill, full on itching everywhere. I have tried this several times in the last week, same thing. I am allergic to T4. Doctor has seen my rash, knew it was not there prior to the introduction of T4..it's the T4.

    I have no idea how, but I am going to have to try and inch my way up on t3. My feet hurt like crazy on higher doses of T3 and my heart and body can't handle it. I have never been able to do it. Regarding the adrenals; anything I am given for the adrenals, the herbs, etc...makes me on edge and unable to sleep.

    I am putting this out there for others who may not be on PR to learn. You are not alone.

    At the time I had the thyroid removed, I had another CFS friend say to me,"How can't you deal with having your thyroid removed. Lots of people are hypothyroid, it's not like you are the first." That was not the exact phrase she used, but something to that effect, but definitely letting me know, "Something is wrong with you mentally for being like this." Sad coming from another CFS gal who is also on a forum where lots of people have reactions, sensitivities, etc. Having your thyroid out is not a picnic and I to this day find that statement beyond ignorant. Needless to say, we are no longer friends and it's a relief.

    Stay true to yourself, know your body and if something feels off, it is.
     
    Last edited: Jun 4, 2017
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  2. daisybell

    daisybell Senior Member

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    I'm so sorry @Misfit Toy - you so deserve to get a break....:hug:
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    Thanks, @daisybell. I agree. Many of us do and this is why suicide occurs with our illness. When there seems to be no way out, there is sure to be ONE way out. Sad, but true. And, no...I am not there yet. But I can see why it happens.
     
  4. barbc56

    barbc56 Senior Member

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    So sorry about this. It sounds miserable and frustrating. Especially when you need to replace what your thyroid was doing.

    I have some questions which are going to show my ignorance here, but I guess that's how we learn.

    Can your endocrinologist or perhaps a dermatologist determine what kind of rash you have such as allergy vs. another cause or at least narrowing the possibilities of what causes it? Edit- it looks like your doctor did consult with an allergy specialist. At least that confirms that others have had the same problem.

    Is the lactose in synthroid a filler or active ingredient? If it's a filler I would think they could use something else. If it's an active ingredient I wouldn't think that would be an option. I have a feeling it's not a filler as you would have mentioned it.

    Good luck and hang in there.

    Edit. I redacted some of my questions as they were indeed answered in your post.
     
    Last edited: Jun 4, 2017
  5. alicec

    alicec Senior Member

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    Have you tried T3 compounded into a slow release form?
     
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  6. Paralee

    Paralee Senior Member

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    @Misfit Toy , that is so sad! The T4 they have is synthetic, so maybe that's it? But you've tried natural desiccated thyroid and that doesn't work? A lot of people can exist on T3 only but you can't because of the Potts, right?

    There's natural desiccated thyroid, pork and bovine, have you tried both? So Sorry, if I hear anything I'll let you know.....there is one thing, if your adrenals aren't in good shape you can't go up very high on thyroid meds. Also iron can keep it down, but I'm sure you're aware of all this.

    Good luck.

    Edit: Alicec has a good idea?
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    I was so tired on the slow release T3. I felt awful. Thank you though.
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    Paralee, I have not tried bovine. I guess that may be next. The dosages for Bovine confuse me though. I am wondering if it's something I can have prescribed? I am not sure. I have tried NT and NP. I will not try Armour. NP is like armor and I had a reaction. Yes, on the T3 I have POTS. I don't know why.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    @barbc56 -every test I have ever had for a rash, the biopsy comes back inconclusive so my rheum is totally against it. I am, too honestly. I know that if I take this medicine I develop a rash, that is proof enough.

    Synthroid is not truly what I m on. I am on T4 which is in synthroid. Syntrhoid is made up of many fillers including lactose which I can not have.

    At this point, its not the filler as before every time I try the T4, I am given the filler to take. I am always okay with the fillers...all of them. It's when they add the T4 that everything becomes a mess.

    What is interesting, is this time I reacted right away. As within the first 24 hours. When I went on it initially in August of last year, I did not react like this...not right away. It took a few weeks. And...I was on a much higher dose. Now, they have me on 5 mcg. That is super low. To react that quickly shows me it's the medicine.

    In December the higher the dose, the worse my reaction. I was covered with hives, my eyes had crust all around them, etc.

    I don't mind questions...people can learn.
     
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  10. Paralee

    Paralee Senior Member

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    @Misfit Toy , I went "searching" and there's a whole lot of people that break out in a rash with T4, or at least the synthetic kind. There's also some results on orthostatic hypotension connected with synthroid, etc. I haven't found yet why you have to have it with Pots, though.
     
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  11. pamojja

    pamojja Senior Member

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    Sorry if this sounds silly, but nevertheless.. I had a persisting rush on my whole back for 2 years, when I got a diagnosis for a serious disabling disease (PAD). Since all medical options meant being on medications for the rest of my life without hope on improvement I tried Pauling's therapy recommendation for CVD instead. High dose vitamin C and lysine. The skin rush cleared up right away, then it gradually improved my walking-disability, and last found whenever in rhinitis-season frequent vitamin c intake keeps all symptoms away. Might not work for you. But because it's so inexpensive I think it's always worth a trial, might give benefits one haven't even though of. However, start with the lowest dose and increase gradually. At one point, which could be different for everyone (0,5-50 g/d), it gives loose stools, which cease immediately again by reducing the dose only slightly.

    Whichever way, good luck!
     
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  12. Mary

    Mary Senior Member

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    @Misfit Toy - That's rough - I can't imagine being in your shoes.

    You might check out NAET: https://www.naet.com/about/what-is-naet - unbelievable as it may sound, it very well might be able to clear your allergy to T4.

    I've never had NAET done but I have experienced a similar allergy clearing technique which was very effective. Actually I've had it done on me for a dust and cat allergy, and I did it to my sister who had a severe cat allergy; very brief exposure to a cat could cause horrible congestion and burning eyes etc. for her. She wanted to take my parents' cat after they died, so we did the technique and it worked. We've redone it periodically over the years as needed and she's a happy cat owner for over 10 years now. Actually I can't remember the last time we had to do it.

    NAET appears to be a similar technique which I think is well worth checking out - it might help make your life a bit more bearable. If you want more info on the technique we did at home, PM me - one nice thing about it is that it is free. (I requested a PM because it's hard to explain to people who often start spouting the word "woo" when something doesn't fit into the neat boxes of mainstream medicine and I don't want to deal with that right now)

    Good luck --
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy Apologies if this has already been suggested, or you've already tried it, but I wondered if you have posted about your T4 allergy on any of the mast cell boards vs. the thyroid boards? I have had some really obscure questions in the past and posted them on the masto boards and often there is someone out there who has been through the same thing and has an idea to try (not always, but often). Am so sorry you are still dealing with this!
     
  14. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -thank you for asking me this question. YES. I am now just going to the mast cell boards because honestly, no one on the thyroid boards has dealt with this. OR, if they have they can just get on T3 and everything is fine. Or, they get onto armor..yada yada yada.

    There was a girl in Sweden who had a reaction to T4 and was hospitalized. Her rash was crazy. She, like me, was not allergic to the fillers but to the T4 itself. She couldn't speak in English and so stopped posting. She just vanished, but we had the exact timeline. She had her thyroid out the same month and year I did and we have both been through hell.

    Anyway, I am posting on the mast cell boards and I am going to have to go to a specialist. I think I am going to try and get into Dr. Anne Maitland in NYC. She deals with CVID and mast cell, which is what I have. Many recommend her especially if you have CVID. My doctor has to write her a letter explaining why I need to be seen. I don't feel I should have a problem with her taking me. The very fact that I can't take IGG is huge and with CVID she wants people on it.

    My tests all came back negative for mast cell, but I have had this problem for awhile. One day I can eat a gluten free cupcake and a month later if I eat the same gluten free cupcake, I could be in bed for days recovering from some crazy reaction to it.

    I also have a constant runny nose. I mean, constant.

    Ginger, how much Ketotifen are you on? I am only on 1mg twice per day, but I see my doc on Wed and want the dosage upped. It helps me to eat food, but it's not helping the T4 intolerance.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    @Mary -I have tried NAET and it's never worked. My chiropractor does it also and nada. Nothing. :-(
     
  16. Mary

    Mary Senior Member

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    Sorry to hear that! Just wondering - it's possible that the other technique might help you, if you have any interest , let me know ---
     
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  17. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -what dose of ketotifen are you on? I am only on 2 mg. What is the standard dose?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I'm on the opposite coast but I have heard good things about her and that sounds like an excellent plan and hope you can get an appt.

    I think the tests done by an MCAS specialist will be more specific to your situation (or at least they were for me). Although my MCAS remains in remission for ten months of IVIG, my prostaglandin levels remain very high (one is in the thousands that should be under 200) so at least for me, the tests do not correlate with the symptoms. When MCAS almost killed me in 2015, my prostaglandin levels were lower than now!

    I took 2 mg 2x/day (so 4 mg per day) for about 1.5 yrs but as I improved with IVIG, I lowered the dose to 2 mg just 1x/day. The exception is if I try a new food or eat in a restaurant, then I take the second dose along with other MCAS meds to be safe. But in general, I no longer have to take meds in order to eat food. But now that my IVIG Auth is over, and it's unclear if I will be able to get more, I do not know what will happen with my MCAS. If I notice any return of reactions to food or smells (no matter how minor), I will go back to the 4 mg per day (vs. the 2 mg) along w/my other MCAS meds.
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -wait..you are not covered for IVIG anymore? is that what you are saying? Oh no. Is this normal treatment protocol? Thank you for your response. I am SO HAPPY that you are in remission. This is such great news! Honestly, super elated.

    How is your breathing? Didn't you have a super sharp pain upon breathing? Are you walking fully now? I am sorry. I am so out of the loop of PR due to my own never ending thyroid and MCAS crisis. Plus, there are so many new people. I would love to know how you are and if you have a post on here explaining so, please do tag me. I am very happy and interested.

    It always makes me happy to see someone who was so sick doing so much better. your hard work and persistence has truly paid off. :thumbsup::star::heart:

    BTW, even with CVID, I am not sure I am even qualified for IVIG due to my numbers. My numbers are in the 700's and even though that is low, it's not 200. Insurance companies have really clamped down on this.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy I do not have a central thread to tag you to and my info is spread around in a bunch of different threads. I had planned to create a thread like this but never got a chance due to other life circumstances getting in the way. I did high dose IVIG for autoimmunity (vs. low dose for immune deficiency). But my IVIG Auth just ended in May and we are trying to get Rituximab approved. If it takes much longer, we are going to fight for additional IVIG in the interim (but no guarantee I will get anything at this point).

    High dose IVIG was the best treatment I have ever done. My MCAS went into remission and stayed there and I had vast improvement in muscle strength, overall stamina, my insane startle reflex disappeared, and I can walk more steps inside my apt without wheelchair. I still have POTS/Dysautonomia and some breathing issues while standing and still use the wheelchair 100% when outside of apt and cannot drive.

    So I still have much further to go and without Ritux approved or additional IVIG, I am afraid it could all disappear and even the anaphylaxis could return. But am trying to stay positive and have a doctor who is fighting for me and appealing the insurance denial. Thank you for asking and I don't want to take your thread off track but wanted to reply. Most likely I will take one dose of MCAS meds (including the Ketotefin) per day for the rest of my life b/c I do not want to mess with something that is working.
     
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