Seriously Anemic but Unable to Supplement....

[ChickenBear]

Hi guys,

I've had MCAS or high histamine (likely brought about by mold exposure in addition to genetics). This has been going on for almost 8 years now.

I used to do great on B12 and was neutral on iron. Now? They both make me *crazy*, like I've had 5 espresso shots. If I try to supplement, I don't sleep for at all and often have a panic attack. It's horrible. I took methylcobalamin and after 3 days, I needed to call an ambulance because I was afraid I was having a heart attack (I wasn't.)

My thyroid doc has been saying for years "You're anemic" and I alway say "I know but I can't tolerate the pills". I've tried standard stuff, dessicated liver supps, the iron fish, herbal teas, slow fe, eating more meat, etc.

But in our last meeting, he said I now needed a hematologist and that I might need transfusions. My ferritin was a 3.

Anyone know of a smart way to supplement with iron or B12 (which I know raises histamine significantly?) Or a particular brand you tolerate well?

Thanks so much!

Cheers,
CB

 

[Alvin2]

This reminds me of Anemia of chronic disease.

 

[lenora]

Go to the hematologist (or even oncologist). My husband has two blood diseases at opposite ends of the spectrum. Not everything is answered with vitamins, etc. Blood tests often show what your problems are....sometimes Rod has blood taken and other times other measures are taken.

This has worked very well for us for the past 20 or more years. I'm grateful that he went. Yours, Lenora

 

[Gingergrrl]

If I try to supplement, I don't sleep for at all and often have a panic attack. It's horrible. I took methylcobalamin and after 3 days, I needed to call an ambulance because I was afraid I was having a heart attack (I wasn't.)

I had a similar reaction to Methyl B12 shots in 2014 and thought I was having a heart attack but it turned out to be an overmethylation reaction. I learned after that (from 23andMe and talking to my doctors) that I do not tolerate Methyl B12 in any form or any circumstances. I switched to Hydroxo B12 and tolerate it without any problem.

My thyroid doc has been saying for years "You're anemic" and I alway say "I know but I can't tolerate the pills". I've tried standard stuff, dessicated liver supps, the iron fish, herbal teas, slow fe, eating more meat, etc.

My Endo (who monitors my thyroid) also told me that I was very anemic (a few years ago) and told me that I needed to take iron. He mentioned iron via IV form called Venofer but when I talked to my (former) mast cell specialist, he said that it was too dangerous b/c iron in IV form is a very high risk of anaphylaxis and I was already having constant anaphylaxis from food (at that time).

So I ended up finding iron in pill form that works really well for me and at present, my iron & ferritin are in normal range and my Endo told me to stop taking it b/c I don't need it any more. I can give you the exact info re: the brand & dose of the Hydroxo B12 & Iron supplements that I take if it would be helpful and just let me know.

But in our last meeting, he said I now needed a hematologist and that I might need transfusions. My ferritin was a 3.

I would definitely follow up w/your hematologist b/c iron via IV form can cause anaphylaxis and should be done in the hospital per my former mast cell specialist.

 

[sunshine44]

i was supposed to see a hematologist for similar reasons before i crashed severely and became bedridden in 2017. Not sure if your body can tolerate these patches? https://patchmd.us/product/iron-plu...nRPR4jXee_Wq5pRbPCluenXnDQTVdD5IaAjSvEALw_wcB

 

[ChickenBear]

Thanks Guys!! I really appreciate your feedback! I will get to a hematologist ASAP.

 

[hopefulalligator]

@Gingergrrl Can I ask where in 23andme you found out about overmethylation? I have found my MTHFR variants via 23andme but haven't looked into what you described.

 

[Gingergrrl]

@Gingergrrl Can I ask where in 23andme you found out about overmethylation? I have found my MTHFR variants via 23andme but haven't looked into what you described.

I don't remember the exact words but I think the MTHFR mutation that I had (from 23andMe) was called "compound heterozygous". I can find my report if it would be helpful and we put the data through a program called "Genetic Genie" (back in 2014 when I did the test).

I had shown my report to a doctor that I worked with who was a mold specialist, and also to my main doctor who is now retired. Both of them said that the MTHFR mutation showed that I do not tolerate Methyl B-12 and this was 100% true (in my case). I had tried Methyl B-12 & MethylFolate numerous times in 2014 & 2015 but even at miniscule doses it caused me to have a horrible over-methylation reaction.

So instead I take Hydroxo B-12 & Folinic Acid (a lozenge from "Seeking Health") and I do not have any problems with it whatsoever.