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

[Misfit Toy]

@Gingergrrl -Ginger, do you ever take ketotefin not prior to eating, but just any time of the day? I forget to take it before I eat. I have been so ill and I am trying to get into a routine.

 

[Gingergrrl]

@Gingergrrl -Ginger, do you ever take ketotefin not prior to eating, but just any time of the day? I forget to take it before I eat. I have been so ill and I am trying to get into a routine.

I take it with my other MCAS meds 30 min prior to eating but at present I can eat without the meds and in some kind of MCAS remission from IVIG. But for approx 1.5 yrs I took a set of 6-7 meds and supplements 30 min prior to eating and Ketotefin was one of them. Now I take it once a day on the average day (2 mg) vs. prior 4 mg. Hope this helps.

 

[Misfit Toy]

@Gingergrrl -It's amazing to me that you can handle IVIG. I can eat and take way more than you and that stuff was poison. I am SO glad you can handle it. We are all snowflakes.

 

[Strawberry]

@Misfit Toy Sorry to hear you are having such problems! I also take ketotifen, but thankfully I don't have stomach issues any more. I haven't for probably close to a decade. I take ketotifen for severe nasal and skin allergies, so I don't need to take them before eating.

As long as you don't need it to eat food, you should be good taking it when ever.

 

[Gingergrrl]

@Gingergrrl -It's amazing to me that you can handle IVIG. I can eat and take way more than you and that stuff was poison. I am SO glad you can handle it. We are all snowflakes.

Am actually having IVIG now (almost done) and have part two tomorrow. Am not allergic to Gamunex whatsoever and only problem with initial infusion was that the speed was WAY too fast but with slower (6-7 hrs) speed, I am okay.

ETA: Good luck with the Ketotefin and it was a lifesaver for me last summer.

 

[Misfit Toy]

On thyroxine...60 mcg...and worse. Can't sleep at all and all I do is itch. Full on rash. I have been trying to get off of T3, but I am so sick the higher I go up on the T4. I cannot sleep at all. AT ALL.

I skipped it all day, the T4, took it tonight and developed a migraine and 2 hours later itching all over. My scalp, my legs, etc....no allergy medication such as zyrtec or benadryl works. Nothing works.

I am scared to death as I have no thyroid. I don't know what to do.

 

[Misfit Toy]

 

[Misfit Toy]

Above is the rash I have developed since being on a compounded T4. I have been on NDT, a T4 with Cellulose that was compounded and now this, a T4 that is compounded with Loxoral, a hypoallergenic filler I had no problem with on it's on...I tested it. I can't sleep to save my life and I am convinced it's due to an allergy to the medication that I can't sleep. I am stopping it tonight to see if I sleep. Since going up on the T4, which means more medication...the rash is much worse and sleep is absolutely non existent.

I am being told by a forum, I need T4...I need a higher dose of T4, but if I am non functioning, unable to sleep and covered in hives..what am I supposed to do? I can't go on like this. I would rather be dead. It's been 4 months of T4 with T3 and I have become so much worse. I was better, not great, but better on more T3, less T4, but my TSH and T4 levels were non existent.

 

[erin]

So sorry Misfit Toy. I don't know what else you can do now?
Did you have an adrenal issue as well?

Currently I am reading Dr. Barry Durrant Peatfield's book "Your thyroid and how to keep it healthy" it is a second edition of his book "The Great Thyroid Scandal and How to Survive it". I am half way through.

I phoned him few weeks ago out of desperation, had a long conversation, eventually will make an appointment after the holidays and I will see him.

He asked me few questions and after my answers he told me I probably have adrenal fatigue and I can't utilize T4 that I was prescribed. (I still have my gland and I'm hypo.) I need to sort the adrenal first then I can utilize T4. In his book it looks like T4 is acting as a poison in my system as I can't utilize it. He suggests not synthetic, but the real dessicated thyroid grains. They contain all 4 Thyroid hormones.

T4 on its own, not converted to T3 is toxic he says. I'm wondering this is the case with you now?

 

[Valentijn]

I am being told by a forum, I need T4...I need a higher dose of T4, but if I am non functioning, unable to sleep and covered in hives..what am I supposed to do?

Obviously the forum is wrong, so stop listening to them when they insist you need to do something which makes you feel worse.

 

[Misfit Toy]

So sorry Misfit Toy. I don't know what else you can do now?
Did you have an adrenal issue as well?

Currently I am reading Dr. Barry Durrant Peatfield's book "Your thyroid and how to keep it healthy" it is a second edition of his book "The Great Thyroid Scandal and How to Survive it". I am half way through.

I phoned him few weeks ago out of desperation, had a long conversation, eventually will make an appointment after the holidays and I will see him.

He asked me few questions and after my answers he told me I probably have adrenal fatigue and I can't utilize T4 that I was prescribed. (I still have my gland and I'm hypo.) I need to sort the adrenal first then I can utilize T4. In his book it looks like T4 is acting as a poison in my system as I can't utilize it. He suggests not synthetic, but the real dessicated thyroid grains. They contain all 4 Thyroid hormones.

T4 on its own, not converted to T3 is toxic he says. I'm wondering this is the case with you now?

My T4 is converting. I have no conversion issue. No reverse T3 problem. I'm on T3, too. I tried nature thyroid and did awful on it. NDT is also very hard to do. At least I found it to be. I know I have adrenal issues. I have never been in range since having thyroid out almost a year ago. The worse the adrenals have become.

I'm really unsure of where to go. NDT is a possibility. Don't know. Good luck!

 

[erin]

Sorry I thought your T3 use was not efficient, I must be confused.
According to this book I'm reading, sometimes the adrenal issue may cause the thyroid problem in the first place.
Get well soon, I hope the allergy disappears soon.

 

[Gondwanaland]

I take compounded T4+T3.

Recently I upped my T4 dose and became intolerant to meat (gouty joint pain). I found the following explanations:

2001 Hyperuricemia and gout in thyroid endocrine disorders
http://www.clinexprheumatol.org/article.asp?a=1194
"In comparison to the prevalence reported in the general population, a significant increase of both hyperuricemia and gout was found in the hypothyroid patients, and of hyperuricemia in the hyperthyroid patients. In hyperthyroidism the hyperuricemia is due to the increased urate production, while in hypothyroidism the hyperuricemia is secondary to a decreased renal plasma flow and impaired glomerular filtration"

2014 Hyperthyroid and Hypothyroid Status Was Strongly Associated with Gout and Weakly Associated with Hyperuricaemia
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0114579
"Both hyperthyroid and hypothyroid status were significantly associated with gout and weakly associated with hyperuricaemia. A thyroid function test for gout patients may by warranted"

2013 Serum uric acid in relation to endogenous reproductive hormones during the menstrual cycle: findings from the BioCycle study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3685334/
"Mean uric acid concentrations were highest during the follicular phase, and were inversely associated with E2 and progesterone, and positively associated with FSH."

2002 Etiological role of estrogen status in renal stone formation
https://www.ncbi.nlm.nih.gov/pubmed/12394677
"The lower risk of stone formation in women may be due to the lower urinary saturation of stone forming salts. Estrogen treatment may decrease the risk of stone recurrence in postmenopausal women by lowering urinary calcium and calcium oxalate saturation"

2008 Postmenopausal Hormone Replacement May Reduce Uric Acid Levels in Women
https://www.hopkinsarthritis.org/ar...acement-may-reduce-uric-acid-levels-in-women/
"The association of menopause with increased uric acid levels was partially abrogated in women using HRT"

I then started estradiol replacement therapy (undetectable blood levels) and found out I could go back to my lower thyroid dose, with great relief in pain and agitation.

I think serotonin is involved (I guess both estrogen and T3 raise serotonin). I am waiting to stabilize before getting a blood draw again. If I am to up the estradiol replacement I will be prepared to ditch the T3 intake completely.

Have you had your estrogen levels checked recently?

 

[Gondwanaland]

I forgot to add the following:

I take T4+T3 in the morning and T3 in the evening.

After starting the transdermal estradiol, the evening dose of T3 would cause me severe rhinitis. Then I ditched it and am only taking the morning dose. The hypo symptoms were hard in the 1st days, but subsided by eating something. Sleep is slowly normalizing.

 

[Misfit Toy]

@Gondwanaland -my estrogen and progeserone are low, but I have endometriosis and cannot take estrogen and bio identical makes me sick. My whole body was inflammed on estrogen a few years back and I had horrible panic.

I am thinking of going back to T3 and then keeping it there for awhile and seeing what is next. I have not slept since October 24th when my T3 was lowered and T4 went up. I don't sleep. Now that my T4 is higher, all I am too sick.

I am having a toxic reaction to T4 and from what I am reading on the internet...many people do. I don't know why, but they do.

My T4 levels upon lab work never change. EVER.

My T4 level is 0.7. When I was on 13 mcg of T3, my numbers were 0.4. On 60, it's 0.7. It makes no sense. None. Something is wrong.

 

[Gondwanaland]

Something is wrong.

I am so sorry.

 

[Maria16]

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.

I have very similar problems. I you like we can exchange experiences. I am New to this group but you can try to pn me if that is possible, too.