How Do I Know If It's MCAS or An Allergy?

[Misfit Toy]

I started weeks ago with what I thought was a cold, which seems to be one, which could very well be CVID and an infection that can't get off the ground due to my messed up immune system.

I also am having a problem with T4 medications. I was mentally fine on Tirosint, but I had neuropathy. Now, I am on another T4 medication with a filler called Loxoral. It's supposed to be hypoallerginic and for kids with autism. I took it by itself, meaning the filler and was okay, but after taking the T4 this AM, I had a profused amount of what felt like adrenaline rush into my blood and I had to go to the bathroom (you can guess) twice.

I can't make sense of it. I have no idea if I am having an allergy to thyroxine, otherwise known as T4, or I am just having a mast cell reaction.

Over the past month, I have had severe itching. A cold, sinus mucus that just continuously drains down the back of my throat and I am having gastritis right now.

I have no thyroid and need thyroid medications or else I will die. I am having reactions to almost all medications.

How do I know if it's an allergy or a Mast cell situation? I am so sensitive to most anything. On the mast cell board on FB, they are all saying, it's the filler. But, I was okay with the filler. I just don't know anymore.

Is there anything I can do to stop from reacting?

I emailed my doctor and asked to take the T4 at night or late afternoon instead as my adrenals are so low in the AM so I react to so much in the AM. He said FINE. I may actually eat food and take it even though you are not supposed to.

I have tried NDT-peeling lips and rash along with itching and gastritis.
T3 only-can't get above 62.5 mcg.
T4-sound sensitivity, adrenaline rushing through veins, etc.

I feel like a freak and have no idea what to do. T4 stops my hair from falling out. T3 only causes my hair to fall out.

 

[Gingergrrl]

I don't know the answer but in some ways if you consistently have an allergic reaction to the medication, whether it is a true IgE allergy to that med or is mast cell mediated, I am not sure if it matters and I am guessing that both a regular allergist and a mast cell specialist would advise you to stop taking that med. My MCAS doc would first inquire if there were fillers or dyes that you could be reacting to (vs. the active ingredient in the med) and try getting it compounded. But if you already did that and it's not the fillers, then I would assume it is the med itself (vs. one of the inactive ingredients which could be eliminated or changed). I don't know if I explained that well but hoping it helps!

 

[Misfit Toy]

@Gingergrrl -I was hoping it wasn't a reaction. I am so down about it as it's something I need. I can't wrap my head around it. No one on the mast cell group of FB is as sick as I am. They all actually work. I know you understand this.

 

[zzz]

@Misfit Toy, I am really sorry to hear about all the problems you are experiencing.

I have no idea if I am having an allergy to thyroxine, otherwise known as T4, or I am just having a mast cell reaction.

It would be extremely unusual to have an allergic reaction (or mast cell reaction) to T4, as it is such an important hormone. Also, although you are clearly reacting to your T4 supplement, it doesn't sound like an allergic reaction at all. Allergic reactions generally include skin rashes and swelling (such as swelling of the throat).

Over the past month, I have had severe itching. A cold, sinus mucus that just continuously drains down the back of my throat and I am having gastritis right now.

These could easily be seasonal allergies; I know several people (including myself) who are having the exact same symptoms, and they started fairly recently. The gastritis would be from the mucus draining down.

The itching may or may not be part of these allergies; it's certainly possible that there's another cause for it.

On the mast cell board on FB, they are all saying, it's the filler. But, I was okay with the filler. I just don't know anymore.

It is very common to be able to take something such as a filler for a long time, even many years, and then develop a severe reaction to it literally overnight. So even though you know that in the past you've been able to take something, your tolerance to it may have disappeared. You can only know for sure by your own testing.

Is there anything I can do to stop from reacting?

Probably, but this is where you would need a really good specialist to figure what to do for you. Finding a really good one who can understand cases such as yours is quite difficult, unfortunately.

I emailed my doctor and asked to take the T4 at night or late afternoon instead as my adrenals are so low in the AM so I react to so much in the AM. He said FINE. I may actually eat food and take it even though you are not supposed to.

I take T4, and occasionally I've forgotten my morning dose, so I've taken later on, sometimes very close to a meal. As far as I can tell, it still works just fine. I say this because I'm very sensitive, and I notice after a few hours if I've missed my T4 because I get noticeable hypothyroid symptoms.

I feel like a freak and have no idea what to do. T4 stops my hair from falling out. T3 only causes my hair to fall out.

You really have my sympathies here, as I don't see any easy answers. The one thing that seems to be a real possibility for the source of your T4 reactions is the filler in the T4. It may even be having a delayed effect, which would make it not at all obvious that it's the problem. I would suggest getting a T4 with no filler, as that certainly can't make things worse, and it might help. And of course there are many different brands of T4; finding one with no artificial coloring, additives, etc. would also seem to be important, if you haven't already done this.

I wish you all the best here, as I know that you are in a really difficult situation.

 

[hixxy]

I agree with @Gingergrrl I don't think it matters either way. The end result is the same, you likely can't continue with the medication.

 

[Gingergrrl]

@Gingergrrl -I was hoping it wasn't a reaction. I am so down about it as it's something I need. I can't wrap my head around it. No one on the mast cell group of FB is as sick as I am. They all actually work. I know you understand this.

I want to clarify that I have no way of knowing if it was a mast cell reaction but more so that if every time you have taken it, you have gotten an allergic reaction, then ultimately whether it was IgE or mast cell based, I am not sure if it matters? It is definitely something that you need since you no longer have a thyroid so I am hoping there is another brand/version or a compounded version that you can tolerate.

My situation is very different and even though I have Hashimoto's, I am able to take a very low dose of Armour Thyroid each morning and am not allergic to it. I remember you mentioning multiple times that you cannot tolerate Armour (although I forgot the exact reason). Am hoping there is some version out there that you can tolerate and am so sorry you are going through this.

I used to view two Mast Cell groups on FB (am sure there are many more, but I read and occasionally asked a question in two of them) and I found there to be a huge variety of people. Some who worked full-time and MCAS was very minor and others who were in the hospital/ER multiple times a week with anaphylaxis and feeding tubes and could not work (so it seemed like quite a spectrum of people).

I agree with @Gingergrrl I don't think it matters either way. The end result is the same, you likely can't continue with the medication.

That was my sense but am hoping that there is a version still out there that you can tolerate. What does your Endo think (@Misfit Toy)?

 

[mermaid]

@Misfit Toy I too am on thyroid meds and struggle from time to time with reactions - never being quite sure what's what. I only take T3 (4 years on it after 17 years on T4), and no other medications, but it's something that is important to take, so stopping it is not an option. I am also very sensititive to foods and to other pharmaceuticals.

Interestingly, I get a kind of gastritis pain sometimes after I have taken the T3 but then it wears off quite quickly. This is especially if I take it on an empty stomach.

I have recently started with Allergic Rhinitis following an eye operation which I think was triggered by the 3 kinds of eye drops and this is I believe a Mast Cell Activation (I don't know much about the subject at the moment). I wrote about it on here the other day but no one replied.

My approach to this, is to try and calm all the things in my body that could be making things worse - so stopping dairy for a while, and having a good clean up in my bedroom to improve the house dust, and having drinks with nettle and ginger in them. I found a good site that made lots of suggestions so I am trying several of them, and it seems to be working overall thankfully though not very consistently yet. Basically I am trying to strengthen the immune system to deal with things. I do go to a medical herbalist and have found that her herbs overall help me a lot (though some I cannot tolerate).

Of course in my case I am no longer taking the eye drops so that is something, but you cannot stop taking thyroid meds altogether. Just wondering if this approach will help though - ie treating the whole body rather than the one thing which at the moment you cannot be absolutely sure if it is the thyroid meds that are causing it. How long have you been taking this T4 altogether? Is it enough time to be certain that it is this that is doing it.

How is it going now you are trying the T4 with food and later in the day? That sounds worth trying. I guess you won't absorb quite so much as without food, but you will still absorb some.

 

[justy]

Hi Misfit, so sorry to hear you are still having trouble with your meds. Of course you need to find a solution to this as you cant not take any thyroid meds without a thyroid (as you know).

The reaction of adrenaline and rushing to the bathroom is very similar to the reactions I get to meds when I react to them, only I get low BP and feel out of it for a couple of hours and get a terrible sense of impending doom.

Your generalised itching etc and drug reactions sound very much like MCAS to me. I have been told many times that I cant react to certain things as we already have them in us etc (like T4) but I do in fact react to them.

My best advise would be to try and keep your histamine 'bucket' as low as possible by cutting out all possible triggers. so low H diet, no chemicals perfumes etc around you, stop other drugs if they may be adding toto the overfull bucket if you are able etc etc. This may help to reset things a bit so that you can try the T4 again. You said you tried the kids one, but does that still have fillers? can you get an ultra pure compounded version?

Lots of people react ot NDT as its from pigs- can you eat pork?

Are you on any meds to stabilise those pesky mast cells? Have you seen an MCAS specialist? if not then perhaps npw is a good time to follow this up and see if they can work with your endo?

Funnily enough I react to drugs more in the am than the PM - do you know why this is?

I cant remember what you wrote in your post, but do you react to lower doses? I sometimes find I can train my immune system to accept a drug by starting at very low doses and very gradually building it up...

 

[Misfit Toy]

@Gingergrrl -I have not tried armour. It was reformulated and many didn't do well on it. They got sick. SO, I have been nervous to try it. They added microcrystaline cellulose and that doesn't do well in NDT drugs. SO, that's my fear.

 

[Misfit Toy]

@justy -I can eat pork, which is why I don't get that i couldn't handle Nature Throid. My lips pealed on it, I itched and I would sleep every time I took it.

I think I react to things earlier in the morning, because my adrenals are at their lowest. They are like a 2. SO, that's one reason.

But...as for the rest, I don't know. I can react to foods that are questionable and other times I don't. You described it perfectly. TOTAL DOOM. I had that heart racing, adrenal firing and then diarrhea and right afterwards, all life was out of me. ALL DAY. I was hanging from a tree upside down. I am so exhausted today. I don't get it. My stomach felt like it had fireworks going on in it yesterday.

 

[Misfit Toy]

@mermaid -this was only after one dose of T4. One dose of the new compounded 40 mcg T4. It's in a capsule. I am usually okay with capsules. Today, I will eat everything to the T fine.

The other compounded T4 medication, I felt not good on. Constant feeling of depression. I started at 13 mcg and worked up. Up to 37. Once I got on 37, I was so depressed, was not listening to music, every sound was bothering me. It was crazy. So, I went off of it and felt better. BUT...the itching continued even off of it.

It's like my immune system is having a field day.

I am going to take the T4 later in the day (the brand new one) and if there is a problem, then that is it.

Interestly, I have never had a reaction like the one I had yesterday to T4. This reaction was weird.

I may have to try a lower dose and a different compound.

I have been on T3 only, I just can't get up that high. What dose are you able to tolerate, Mermaid?

 

[Misfit Toy]

I have to say, it also doesn't help that I have a cold, or whatever this thing is. I am unable to breathe, I wake up with crust on my eyes and there are times where I can't even talk. This has been going on for weeks.

I am on antibiotics too, which can't be helping my gut.

 

[justy]

@justy -I can eat pork, which is why I don't get that i couldn't handle Nature Throid. My lips pealed on it, I itched and I would sleep every time I took it.

I think I react to things earlier in the morning, because my adrenals are at their lowest. They are like a 2. SO, that's one reason.

But...as for the rest, I don't know. I can react to foods that are questionable and other times I don't. You described it perfectly. TOTAL DOOM. I had that heart racing, adrenal firing and then diarrhea and right afterwards, all life was out of me. ALL DAY. I was hanging from a tree upside down. I am so exhausted today. I don't get it. My stomach felt like it had fireworks going on in it yesterday.

Definitely a reaction of some sort. If this isn't the only thing you react to and you have a lot of generalised itchiness then more likely MCAS. When I have a bad reaction I get the feelings of doom, low BP, heart racing etc and the rushing to the loo thing as well - its awful! Sending gentle hugs.

 

[justy]

I have to say, it also doesn't help that I have a cold, or whatever this thing is. I am unable to breathe, I wake up with crust on my eyes and there are times where I can't even talk. This has been going on for weeks.

I am on antibiotics too, which can't be helping my gut.

Leaky gut contributes to and makes MCAS worse (thats me!). Viruses and infections can also increase reactions in people with MCAS, so you may be more reactive when ill on top of the normal - or the illness may be partly mast cell mediated. Hard to know.

 

[Misfit Toy]

Leaky gut contributes to and makes MCAS worse (thats me!). Viruses and infections can also increase reactions in people with MCAS, so you may be more reactive when ill on top of the normal - or the illness may be partly mast cell mediated. Hard to know.

My doctor treats MCAS. He knows what it is, so I just sent him an email. He may prescribe the Ketotefin drug. Yes, since the infection started, it's worse. I am reacting to much more. With the CVID, I can't get a grip on it because I can't take the very thing I need....IGG or IVIG. That was one of the worst reactions I have ever had.

Justy, you were good with IVIG? That stuff to me was absolute poison.

 

[justy]

Justy, you were good with IVIG? That stuff to me was absolute poison.

I haven't tried IVIG, BUT low dose SCIG. I started having atypical anaphylaxis to low doses of it so have had to stop - which is a disaster as it keeps me out of bedbound. am sliding back already now ive been off it for three weeks.

 

[mermaid]

@mermaid -this was only after one dose of T4. One dose of the new compounded 40 mcg T4. It's in a capsule. I am usually okay with capsules. Today, I will eat everything to the T fine.

The other compounded T4 medication, I felt not good on. Constant feeling of depression. I started at 13 mcg and worked up. Up to 37. Once I got on 37, I was so depressed, was not listening to music, every sound was bothering me. It was crazy. So, I went off of it and felt better. BUT...the itching continued even off of it.

It's like my immune system is having a field day.

I am going to take the T4 later in the day (the brand new one) and if there is a problem, then that is it.

Interestly, I have never had a reaction like the one I had yesterday to T4. This reaction was weird.

I may have to try a lower dose and a different compound.

I have been on T3 only, I just can't get up that high. What dose are you able to tolerate, Mermaid?

Oh right, just the first dose then. Yes, it does sound as if you are very reactive to things at the moment. I am a bit like that too at the moment, ever since I had those eye drops 8 weeks ago now. I also have this constant feeling of having a cold, but mostly I know it's just allergic rhinitis.

How has it been today with taking it with food? Also lessening the dose a bit could be worth trying, though I guess you would need to open the capsule.

I remember having a conversation with you about the T3 a little while back. I remember asking why you needed to go higher. Is it because you feel you are not taking enough? 'Enough' is different for all of us, and in the UK it's getting difficult to get T3 at all from a normal endo, and I will probably have to import it from Greece soon if my new endo doesn't permit it (appointment soon). The cost of it has risen so much here in the UK they are not allowing patients to use it under the NHS system.

I have never taken more than 55 mcg per day (in 3 doses of 20/20/15) and that feels about right. I can't say it's corrected my low BP or put everything right, but then I was given thyroid meds for underactive thyroid some 21 years ago (T4 for 17 years), and I believe that the ME issues are separate from the thyroid ones, but of course they overlap and it's hard sometimes to distinguish what is what. I think I am better on it than off it, and better on T3 only than on T4.

 

[Gingergrrl]

@Gingergrrl -I have not tried armour. It was reformulated and many didn't do well on it. They got sick. SO, I have been nervous to try it. They added microcrystaline cellulose and that doesn't do well in NDT drugs. SO, that's my fear.

For some reason, I thought that you had tried Armour and that you were allergic or it was a disaster. Since you have not tried it, is it an option to try it starting with a toothpick level dose? Or are you allergic to microcrystalline cellulose for sure (and then of course don't try it, if that is one of the ingredients).

He may prescribe the Ketotefin drug.

Keep me posted if you try the Ketotefin. I take 2 mg 2x/day (total of 4 mg per day) in case that is helpful.

I haven't tried IVIG, BUT low dose SCIG. I started having atypical anaphylaxis to low doses of it so have had to stop - which is a disaster as it keeps me out of bedbound. am sliding back already now ive been off it for three weeks.

@justy, did your doctor have any thoughts on this or are you completely done with the SCIG? I still wonder if a different brand or different pre-meds could make any difference allergically?

 

[Misfit Toy]

@Gingergrrl -I just started it today. 1 mg. I have had the worst allergies and I am hoping it can just help with allergies of food or environmental. I can't stop sneezing. It's been 2 months of this.

 

[erin]

So sorry that you are going through all these. I am about to start thyroxine supplement and I found your thyroid experience very scary. I hope your system settles soon somehow.