Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Adrenaline rush from MCAS?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Misfit Toy, Sep 21, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    Has anyone had a severe adrenaline rush from MCAS?

    I tried taking T4 by way of injection, only 5 mcg..which is nothing and I have had a migraine for weeks, I can't sleep, I wake up in a panic, I have twitches or what I call tic's. I also feel like I have bugs crawling under my skin. I have been feeling mentally off.

    Thyroid forums keep telling me that it is that my adrenals are weak. That can't be it. Within minutes of giving myself an injection of T4, I am exhausted, my heart races at over 102 BPM and then I also shoot off the migraine within minutes.

    I have been in bed due to 5 mcg of T4, or more likely, the medication itself which is in it's purest form.

    Yesterday, I started itching and the day before.

    I also developed horrible gastritis and just all over body pain. Itching began the day before yesterday.

    I do not believe that all can be weak adrenals. I believe it's a reaction. Today I stopped taking it and called my doctor. He said fine, but he wants me to take T4 by way of mouth. I don't know why. What would the difference be. This is sub-q shots of T4. I guess the T4 will not absorb as quickly, but I will still react.

    My labs are showing no difference since the injections of T4. They are the same as prior to T4 which makes sense.

    I gave it a month, I can't do it anymore. Too sick.

    I should also say, I could not handle any smells while on it either. I became too sick from smells. Things I could normally tolerate I couldn't.
     
    Last edited: Sep 21, 2017
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,597
    USA
    I'm bumping this post back to the top so others can read it @Misfit Toy and hopefully give you some feedback. I wanted to reply to a couple things you wrote...

    When I was having "histamine surges" and stage 2 anaphylaxis after eating (in 2015), it included tachycardia and often felt like an adrenaline surge.

    I take a low dose of Armour Thyroid for Hashimoto's (and still have my thyroid) so my situation is very different than yours (as you already know)! But I was curious if there is any kind of gradual allergy shots or drops that could desensitize you to the T4 until you were able to tolerate it, even in a micro dose?

    Maybe someone else out there knows if such a thing exists? Can you ask your Endo? I am also wondering if the 5 mcg is still too large of a dose to take all at once in an injection (even though it might sound small to a doctor). I am the queen of taking tiny micro doses of things that others tolerate in large doses and wondering if this applies here?
     
    Misfit Toy likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    With mast cell, it's strongly not recommended. I did this in June. I had the rapid desensitization and was taking ketotifen. Within 10 hours, I had hives everywhere. I was so sick. Suddenly, I became seriously sick and was having allergic type reactions to everything and went down to only 8 foods I could eat. Now, I can eat about 30 btw. But from that small amount of T4, my body went nuts.

    This time, the shot was recommended and I developed a migraine within 5 minutes of the shot. I thought I wasn't having a reaction because it wasn't my usual MCAS reaction....hives. But, the longer I was on it, I could not think due to the migraine and then all smells started bothering me. I could smell everything. I was nauseous. I would wake up in a panic everyday and then run to the bathroom at like 6 am and not back to sleep due to body anxiety (adrenaline rush) and then not fall asleep after.

    I was burning out my adrenals on the T4. I have no idea what to do now. But, I am seeing an MCAS specialist in a few weeks in NY. Anne Maitland. Here's hoping Ginger. I am super tired of this and like you, I am a detective trying to figure out my own puzzle.

    I may try....God willing...another NDT similar to Armour but not quite. But, I am scared to do it. Having said that, I may give it a try. We shall see.

    I am so glad you can take it.

    BTW, 5 mcg is such a small dose that it doesn't even show up on blood work, so it wouldn't be worth taking anything smaller. For people that don't have a thyroid, they usually take 70 to 150 mcg of T4 so 5 doesn't do anything. But, that's why we started with 5, to see how I would do. It ended up being atrocious.

    My doctor wants me to take it out of the capsule now, saying that the shot was instant and maybe that's why so many side effects. Well in all honesty, I felt similar on the capsule back in the fall. In fact, as I was on it..I was remembering.."Oh, this symptom is what I had on this with the capsule!" That alone made me panic. The migraine was atrocious. When the itching started on the shot this time...BOOM. I was off it. I know what that means..hell is coming if I continue.

    Bottom line, I want to see if Anne Maitland has other patients with this. I feel so alone because even on the MCAS boards everyone can take something and feel relatively normal. Not me.

    TY, Ginger!
     
    AndyPandy and Gingergrrl like this.
  4. Learner1

    Learner1 Professional Patient

    Messages:
    1,185
    Likes:
    1,931
    Pacific Northwest
    In addition to the shot getting it directly into your bloodstream faster, could there have been some other ingredient (preservative?) in the liquid T4 that you reacted to?

    I find I have to thoroughly research anything I put into my body and have been utterly amazed at all the allergenic and toxic things that are put in pharmaceutical drugs.

    Also, all the advice I've seen is to not dose thyroid without first attending to the adrenals. My doctor has me take an adrenal glandular supplement and replacement dose hydrocortisone in divided doses, in addition to T4/T3.
     
  5. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    Do you have MCAS? I can't take anything for the adrenals, but prednisone. All that you mentioned I react to.
     
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,597
    USA
    @Learner1 I've heard of this many times (and do not know a lot about it) but in Misfit Toys particular case, because her thyroid has already been removed, I think she is trying to find a way to tolerate literally any form of thyroid meds and is allergic or reactive to them all! I do not know the answer but is there something that would be done re: adrenals that would make her able to tolerate thyroid meds?

    And @Misfit Toy, I don't mean to sound like I am discussing you in the third person! I was just curious as to the answer myself and feel horrible that you have been suffering w/this issue for so long.
     
    Misfit Toy likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    This is the golden question. I went into the surgery already so sick and my adrenals were compromised. Between the CVID, the sjogrens, the IC, the Endometriosis and my inability to already not tolerate meds and foods prior to the surgery, it pushed my adrenals over the edge. Also, and this is very important, I went for years being untreated for hypothyroidism. It's unreal when I look at my test. The test range for Free T3 is 2.3 to 4.6 with the best number being about a 3.7 on up. That is optimal..like a 4.1. I was a 2.7 but because I was in "normal" range, it was not treated. My T4 was low too. THIS is why I had a goiter, nodules, everything. UNTREATED hypo which had to stress out my adrenals.

    I want to talk to Dr. Maitland the MCAS doc in NY if the adrenals have caused the MCAS compounded with the thyroid removal. Having said that, I had allergies, allergy shots, asthma as a child. I had IC in my teens. I think MCAS was always there.

    Right after the thyroidectomy, I couldn't handle the meds from day one. It's just a web. A huge web and I need someone who can seriously unravel it. Afrin is not far from me either, but he costs a fortune. $2,000 for the first two visits. That is just insane to me. If I had that kind of money, I would do it, but no. I can't.

    He is paired up with a functional medicine doctor which is enticing. The two of them working together could give some good answers perhaps. I am looking forward to seeing what happens with these two working together through the years.

    Btw, I had lobster last night for my birthday to step out of my four meat eating situation. Delicious but the itching is there. It's not too bad, but yes..lobster is high in histamine and I am paying the price. :meh:
     
    Learner1 and Gingergrrl like this.
  8. Learner1

    Learner1 Professional Patient

    Messages:
    1,185
    Likes:
    1,931
    Pacific Northwest
    @Gingergrrl Thanks for clarifying. It still seems that supporting the adrenals would be a good idea. I have many similar issues, MCAS, CVID, crashed adrenals, and Hashimotos, though I still have my thyroid gland. Both my docs who understand these issues are certain that my adrenals should be supported.

    @Misfit Toy Have you looked into Gleevec? I believe Afrin has had success with it for MCAS. Having a functional medicine doctor looking you over sounds like an excellent idea. I've yet to get any help from an endocrinologist.
     
    Anju and Gingergrrl like this.
  9. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    It's so interesting to me what MCAS is for someone. They can still take so much. I was down to 8 foods in June and July. 8 foods. The only other person who is like that that I know of on here is Ginger. There is MCAS and there is MCAS. I have MCAS. Some people have "MCAS Light" and some I am not even sure have MCAS.

    I can't take anything other than prednisone for my adrenals. That's it. Maybe one day.

    I have a functional medicine doc, my case is just too difficult at present. I have heard of Gleevec but not tried it. I am still new to this. Some of the meds including Xolair scare the crap out of me.

    One woman wrote on a forum that she had Xolair and within minutes had a heart attack and her doctor had to call 911. No thank you!
     
    Last edited: Sep 26, 2017
    Gingergrrl and Learner1 like this.
  10. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    Hi @Misfit Toy,

    Thankfully I imagine I would fall into your 'MCAS Light' category: I suffer from most of the MCAS symptoms but am not triggered by smells, nor have I experienced life threatening anaphylaxis. The worst (i.e. most dangerous) it got for me were episodes of extremely elevated blood pressure, which stopped once I started on daily anti-histamines.

    I guess without ana/flushing some may say I could be better described by histamine intolerance, my problems are also predominantly triggered by food. The line between MCAS and histamine intolerance seems blurry, but with diagnosis of Hyperadrenergic POTS & hypermobility disorder symptoms to boot I don't think its a stretch to assume that mast cells are involved in my condition somehow, going on the apparent interaction between all three. I am certainly much more stable with anti-histamines, anti-leukotrienes, sodium cromoglycate and a low histamine, low carb diet.

    I can absolutely recognise your 'adrenaline rush' description. I have found it quite difficult to nail down a specific cause of this sensation or the mechanisms behind it. What I do know is that for me, taking Ivabradine is a massive, massive aid in keeping it at bay. I also know that consuming any high histamine food/preparation will reliably trigger it, as will consuming 'normal' amounts of carbohydrates (perhaps due to reactive hypoglycemia that follows?).

    Have you been properly investigated for POTS? It would seem very likely to be at play, at least secondary to your CFS, Sjogren's & hypermobility. Perhaps something like Ivabradine could be a missing link for you too.

    All the best,
    Ryan
     
    Misfit Toy likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    I have never heard of this. I will have to look it up! I do have POTS. I am pretty sure my pots are adrenals. 100% but the doc who diagnosed me did it without a tilt table test and my rheumatoid doc was happy about this as he said the tile table test is horrific.
     
  12. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    Well, @Gingergrrl -I just took TR man thyroid. An NDT from Thailand. I am probably wrong in doing this. Having said that, my body is a mess and there is NEVER a good time. I took 1/2 a grain so a very small amount. We shall see how this "experiment" goes. I feel a little bit of adrenaline running around. Ugh. Not sure if this was smart. I am so tired of feeling like death. I am just trying to get better. I will report back. Thanks everyone for listening. I appreciate it.
     
  13. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    One of the seemingly rare occasions that USA has been behind the curve on dishing out prescription drugs :eek:

    I believe it got approved for you guys in the last year or two. Many POTSies find it very helpful and a lot more effective than a beta blocker. I also tried bisoprolol, it helped a lot less and made some other symptoms like air hunger far worse (there is talk of beta blockers being contraindicated in MCAS).

    Tilt table is unpleasant (I lasted 7 mins before syncope), though I found it quite useful to clearly see the effect of worst case orthostasis - particularly the drive to overbreathe, which just makes everything worse.
     
  14. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,310
    Likes:
    12,093
    U.K
    Hi, sorry I cant read your thread as m triggered by talking MCAS and only on 7 foods myself currently - justr stopping by to offer gentle hugs to you xx
     
    Hope78 and Misfit Toy like this.
  15. erin

    erin Senior Member

    Messages:
    752
    Likes:
    2,117
    I'm down to 6 foods too; chicken, beef, rice, courgettes, some boiled fruit and gluten free flour products. (I make them myself without additives, preservatives and no sugar.

    I feel very nauseous, no appetite, smells are overpowering, gastritis, feel very down in a strange way. Incredibly lethargic, severe palpitations esp. early hours, twitching but no itching. Lost a stone/ 12Kgs since May.

    I was told by 2 UK dr's could be an adrenal issue. I haven't taken the ACTH test yet.

    Maybe some similarities to your case. However, unlike you I still have my thyroid gland; I have Hashimoto's and I use synthyroid T4.which makes me awful. I'm also on beta blockers.

    I was given a cortisone injection for side pain 25 days ago felt better instantly until last two weeks. Its effect was incredible short lived this time.

    I also believe @justy is down to 6 foods nowadays. She had thyroid issues but can't remember the details.

    PS I can eat olives, so it is 7 foods.
     
    justy likes this.
  16. ryan31337

    ryan31337 Senior Member

    Messages:
    451
    Likes:
    998
    South East, England
    Do you guys find you still get occasional spontaneous reactions to even your safe foods? I had this once a week or so and it usually correlated with days of greater activity.

    Thankfully sodium cromoglycate at 4x 200mg per day has apparently settled it right down.
     
    justy likes this.
  17. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,310
    Likes:
    12,093
    U.K
    yes, I was getting this and it has caused me enormous anxiety issues around eating.

    Tried low dose sod chrom recently but had to abandon it as was causing severe itching including inside my mouth. Am now adding in new foods without it - its a worry as I don't have any safe protein so far in my diet.

    @Misfit Toy how are you dong?
     
    Misfit Toy, Thinktank and erin like this.
  18. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    Justy. I am seeing your posts on here. I went off of FB, just so you don't think I unfriended you.

    I am like you. I can finally eat more food. I was at 8 foods and can eat more now, but I actually think what caused me to be able to eat more is the cortisone shot I had for my neck.

    How am I doing...I am depressed. What do you do for us, those who can't seem to be helped? How do we go on or enjoy life? I am so tired. Exhausted and yet don't sleep well. I am depressed.

    I see a specialist in NY, outside of NYC next month for MCAS, but nervous. What if I can't take any of what she prescribes? So far, it's been a no go. tried IVIG..nope. Tried ketotifen, nope.

    It all just sucks. I feel sad. I want a life, like you. I want my normal version of suck instead of this.

    Do your ears ring? My ears ring constantly.
     
  19. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,302
    Likes:
    6,913
    USA
    I had a cortisone injection and it took away all of my itching. It was miraculous! I wondered if it was the shot and now that the itching is coming back, yup. It was the shot.
     
  20. Hope78

    Hope78

    Messages:
    97
    Likes:
    59
    Germany
    I hear what you say, I am in a similar place. Adrenaline and cortisol surges from MCAS and in between low adrenal problems, so it's a rollercoaster; only thing that helps is hydrocortisone, cannot tolerate mastcell medication, it paralizes my gut (I have gastroparesis).
    I will give the brain retraining a try, I dont have any other options by now as my nervous- and immune system are so out of whack that I dont tolerate what I need, I even react to the most harmless supplemments, so annoying!
    I don't think brain retraining will "cure" me, but I know my limbic system was traumatized by stress, virusses and constant inflammation (mast cells), so calming it down will hopefully help at least a little bit. I know many people here think it's quack, but do we have anything to loose?
    By the way, I do have to take thyroxin too (t4) and this burnt out my adrenals, this was the start of all the mess. But I have to continue with it because I have another illess of the thyroid, so I have no other choice. Isnt that fun :eek:

    I know, it's hard to maintain a positive attitude with such little quality of life. But I am trying hard on staying hopeful!

    Hugs!
     

See more popular forum discussions.

Share This Page