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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. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I missed this question and my MCAS doc says that the standard dose of Ketotefin ranges from 2 mg to 8 mg per day. I don't think he has anyone taking more than 8 mg per day. I took 4 mg per day for about 1.5 yrs (maybe slightly longer)?

    When my MCAS was very bad, I took Atarax as a rescue med and without it, am certain I would have had to use the EpiPen. Now I have not taken Atarax in about 10 months, except as a pre-med for IVIG, and at this point, am fairly certain I do not even need it for IVIG but continue just to be extra cautious. Have you tried Atarax for your skin rash? Am wondering if it would help?

    Edit: My MCAS doc had me take Atarax b/c I do not do well with Benadryl.
     
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  2. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -I am glad you replied to my thread...no worries. I truly hope it is approved. It's so interesting. My rheumatologist really wants me on Ritux but not without IGG because I would die as he puts it. Plus, my lymphocytes are grossly and alarmingly low. I am so glad you could handle the IGG. It's so interesting. I truly wish I could have taken it with no craziness.

    I hope you are able to wash your hair. I know that was a concern for you. Yes, don't mess with something that is working. Smart thinking. I agree.

    As always, wishing you the best.
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    I have never even heard of it. I don't know what it is. I will look it up.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl - I do know it and have it. Hydroxyzine. I can't sleep on it. I feel totally out of it and drugged. I am okay on Benadryl. Total opposite reaction.

    BTW, Singulair made me nuts. Like total anxiety and emotionally unstable. I had to go and stay with a friend while on it because I was panicked to be alone.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Sorry, yes Atarax is Hydroxyzine. For me, it is the most sedating medication I have ever taken and puts me to sleep for 4-5 hrs no matter how hard I try to stay awake so am thrilled that I only have to take it now as a pre-med for IVIG (or dental work).

    I have never tried Singulair. Even when I tried everything on the planet for MCAS in 2015, I never tried that one.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Why does your rheumy want you on Ritux? Do you have specific autoantibodies or is it for another reason? I would think that Ritux would be dangerous if you have an immune deficiency like CVID?

    I've always been able to wash my hair but I could not color or dye my hair for over two years b/c my doctor was afraid I could be allergic to the dye or to the smell of the dye (and I agreed with him and complied). Finally in Feb 2017, he gave me permission so I was able to get my hair colored (with the same natural dye that I had used pre-MCAS) and had no reaction to the dye or smell whatsoever and plan to do it again in the future. Am only doing it about 3x a year to be extra careful.
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -he would like me to try ritux because when my Sjogrens acts up, I have neuropathy. I am not wanting to try it. I don't even know really what it is. I know people with CFS try it. To me, it seems dangerous and yes, with my CVID. He also feels it would help my severe fatigue.

    He would only put me on it if I was on IGG. I don't even think with the lymphocytes that I could have it honestly.
     
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  8. Tammy

    Tammy Senior Member

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    I have forgotten if you've already mentioned this..............was it cancer after all?
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    NOPE! That's the biggest blow of all. However, the goiter was making it so that I couldn't swallow.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I am amazed that your doctor has a way to get insurance to cover Ritux and IVIG (in theory and I know it is not your plan to do it right now)! If you have any ideas re: how s/he was going to get this approved, can you let me know via PM?

    Am glad it was not cancer and at least one less thing to worry about. Is it easier for you to swallow now without the goiter?
     
  11. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -NO...I don't think I could get it covered. I am not sure. Like I said in previous post, my numbers are in the 700's and insurance needs you to be in the 400's. For that reason, I am probably not covered. Ritux would be covered because I have Sjogrens and neuropathy and lab tests to prove it.

    Honestly, I wish I had had cancer. it would have been worth it for me to have the thyroid out. I had it removed due to being scared into thinking it "must" come out. Turns out, all 3 nodules were benign. It probably would have had to come out eventually.

    I truly hope you can continue with IVIG. I would hate to see you lose it's benefits. It's been wonderful for you.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    If you could get it covered, would you try it again? Did IVIG ever help with allergic reactions (or did you try IVIG before you ever had the allergic component)? I am so curious if it would allow you to tolerate the T4? Of course, I have no idea and it's pure speculation.

    But it would still be considered "off label" for Sjogrens just like it is "off label" for me. There are only a handful of illnesses (in the U.S.) like certain cancers, RA, etc, that it is FDA approved for. We presented a very solid case but got denied, at least at the first level.

    It makes me so sad to read this and I am glad that you did not have cancer although it totally makes sense that you would want all of the pain and suffering you have gone through since your thyroid removal to have been worth it and not just for three benign nodules! Although if it would have had to come out eventually, I guess there was no other option.

    Thank you so much and my main doctor is still fighting for me to get Ritux approved or more IVIG while we wait and he told me not to give up hope and to "Stay positive" so that is what I am trying to do. It's just maddening b/c I found something (IVIG) that really helps me and now I cannot have it even though some patients are on it for life.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -what lead me to get the CVID diagnosis or the desire to search for something other than the CFS diagnosis is because all of a sudden I was having a ton of allergies to things, like overnight. And the fact that pain was going with it. I could eat cheese here and there and gluten, but all of a sudden it was like I just couldn't. I had been diagnosed with CFS back in 1989, but in 2012, I had something so different come along. Also, all of these colds, infections, etc that would last for months.

    So, I was diagnosed with CVID after the IGG and IGA levels were super low and then put on IVIG. I was so excited. I was told it would cure me and make me feel normal. My first trial was with privigen. Privigen made me have a horrible migraine and diarrhea non stop. Then I was given Hizentra...I and such a horrible reaction to that that I was honestly scared to try anything else. My heart was about 120 BPM on it and I could not get out of bed. Then I was put on Gammaguard, which at first seemed great. I would have IV Benadryl, lots of fluids in an IV with it, etc..plus tons of drinking water. After about 3 IVIG's with this, I felt psychotic. I had a rash all over and I couldn't sleep at all plus my pain was out of control. The last time I had GG, the nurse had to stop it because my throat closed up on it and I had to go right on prednisone.

    It was a total of 6 months of pure hell and I said screw it, I would rather die than continue. This was back in 2014.

    It totally brought to the surface MCAS. My kidney levels were elevated, my blood pressure was like 140 over whatever. Normally it's 90/60. It was crazy.

    I would do it again, but in much smaller doses and not in heaping IVIG doses. I would do sub-q, but I think that's even harder to get covered now. I can't remember, but I think she said that. I honestly don't think it would be covered with my numbers not being low. I think my rheumatologist has a few on Ritux. I don't know how but he is kind of a wizard with getting people on stuff. I think because of the neuropathy and the fact that my brain MRI showed inflammation. I think that is why he would be able to put me on it. Sjogrens can be deadly for some patients and on the Sjogrens forum I am on, a few are on it. Also, maybe because I am near Philadelphia, there are so many studies and things done at the major hospitals here or in Bethesda which isn't far from me.

    I am hoping this Anne Maitland, if she will see me will give me some insight. The lymphocytes are super concerning to every immunologist because I have the amount of lymphocytes of an AIDS patient. They call what I have "non HIV AIDS." It's very dangerous and cancer or viruses could make me very very sick, but there is nothing they can do for it. No medication.

    I agree with you. You deserve IVIG just like any CVID patient of those who take it. You need it. I am praying you get it. Get approved. Do you still travel all the way up to Stanford or nearby? I can't remember who you see.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    It is interesting that you have CVID/immune deficiency and MCAS/autoimmune conditions like Sjorgrens and Celiac. I seem to be purely on the autoimmune side right now from my tests. Do you still consider CFS to be your diagnosis (in addition to all of the other diagnoses, not instead of). Can you remind me if you have ever been tested for the paraneoplastic autoantibodies?

    I am so sorry that you had such a bad experience w/Privigen, Hizentra and Gammaguard. I actually have only tried one brand of IVIG, Gamunex, b/c it was the one that my mast cell doctor felt I would not be allergic to and he was correct. I expected to not tolerate it but it was the miracle medication for me.

    I have never done sub-q but I know @justy has in case she has any thoughts for you on this.

    He sounds amazing! We are not giving up in my case and I believe if I get three denials (just one so far) that I can apply to get Ritux through Genentech.

    That would be amazing and I hope you can see Dr. Maitland and get the T4 allergy sorted out. I do not have the lymphocyte issue but in your case it sounds like with the "non HIV AIDS" level of immune deficiency that Ritux would be very dangerous and not the right course of action.

    Thank you so much for your prayers and kind words. My next cycle of IVIG would have started in two days if I was approved for more. Am trying to stay positive and hope something will come through.

    No, I only went up to Stanford for a consult re: dysautonomia and do not receive ongoing care there. I am a patient of OMI (or now the former OMI) and my main doc is from OMI but now in a new clinic and my MCAS doc is local and I received the IVIG at the infusion center connected to hospital of my MCAS doc in collaboration w/my main doc. We worked it out perfectly and the only hold-up is the insurance and am completely at their mercy right now.
     
    Last edited: Jun 6, 2017
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  15. Misfit Toy

    Misfit Toy Senior Member

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    Ginger, I think CFS started all of this and then it morphed into auto immune after years of my system being crushed by EBV. I suspect that. But...I could have also always had CVID and not known it. In fact, that is what I suspect as I was hospitalized several times as a child with bronchitis, etc. Nobody ever checked Igg, Iga, IGe. unreal.

    What are paraneoplastic autoantibodies? I have never heard of this.

    I am not sure, but I don't think @justy did well on Sub-q. Justy. how did you do on it?

    Sigh regarding when your next session of IVIG would be. What is your diagnoses or receiving IVIG? I am just curious. I know the primary immune deficiency has a way of getting people on IVIG. But you don't have that. Just trying to come up with ideas.

    That's right, OMI. I remembered but forgot if that makes sense!
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Mine started with mono/EBV as well (plus some additional immune triggers thrown into the mix around the same general time period). I had tonsillitis constantly as a child (like every other month) but once I got sick in Jan 2013, I have never had another cold, flu or fever.

    Someone else could explain them much better than I can but they are autoantibodies that often correlate to an undetected cancer in the body or were triggered by a few cancer cells that the immune system wiped out but are now gone. They can trigger a paraneoplastic syndrome (PNS), or they can exist without any cancer and relate to other illnesses, or they can just be part of an overall autoimmune chaos (like my case so far). The calcium autoantibody that I have correlates with small cell lung cancer but I now have a yearly lung cat scan (just had it a few weeks ago) and there is no cancer whatsoever. Another one (which I do not have) is the anti NMDA autoantibody which triggers brain/neuro symptoms but the cancer it relates to is often ovarian.

    I was receiving high dose IVIG (autoimmune/neuro dosing) to try to reduce all of these autoantibodies and improve my muscle weakness, breathing and ideally even the autoimmune POTS. The fact that it put my MCAS into remission was an added bonus that I was not expecting when I started it. I did IVIG every three weeks from July 2016 to May 2017 (started low dose 24 grams to be safe, then moderate dose 55 grams by Oct, and high dose 82 grams by Dec). I had certain goals that I hoped to be able to do from IVIG (very modest goals that most human beings would take for granted) and I can now do them all. It is so frustrating/scary to be cut off from it.
     
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  17. Tunguska

    Tunguska Senior Member

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    This won't be much comfort, but for what it's worth I'll always remember your case next time a doctor prescribes me a drastic solution like surgery to a questionable issue. (did have some thyroid nodules but no surgery suggestion so far)
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -I can't like your post because it makes me sad. I so hope you are permitted to have this.
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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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.
     
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  20. justy

    justy Donate Advocate Demonstrate

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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. Your reactions to food being variable is very common in MCAS - I have this a lot, one day I can eat a sandwich, another day I react to the exact same thing. I agree totally that your main focus needs to be the MCAS and getting a good MCAS Dr to help you with the T4/thyroid med issues.

    My MCAS drug reactions are awful, and I try niot to worry too much about the future. 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.

    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.

    SCIG - I reacted to this so had to take tiny minute doses to lessen the reactions. I recently stopped taking it altogether, even though my Dr wanted me to continue as I think I was jut low level reacting all the time and over stimulating my immune system.

    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.

    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. I have a ton of things worng with me and have given upo trying to treat any of them due to the MCAS - its a horrible condition that leaves us in such a bad place and unable to treat our other problems.
     
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