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Update and warning about methylation treatment

Messages
69
@UM MAN - How long did you have the chemical sensitivites, and how were you able to figure out what you were low in to correct it? I met with a nutritionists this week that understands methylation, and we identified several deficienies (Vit D, magnesium, zinc, fats, copper, thyroid a little low and several neurotransmitters. Also have h. pylori and HHV6.

When I take a full mag. cap, my body doesn't like it; same reaction I get if I try to take any medication right now. So my choices are limited. I'm wondering how do I get out of this chemical sensitivity? I met with my other functional med dr. in 5 wks. We're waiting on the NutraEval results, but I feel this is a long time to go on like this. I'm sticking to the failsafe diet for now. Thanks for your insight.
 

saint

Senior Member
Messages
218
@Mindy ,

You might be right about the methylation inducing histamine intolerance, but it may have been coincidence. I became histamine intolerant, with nasal and pulmonary symptoms, after a bronchial infection that was treated with levaquin, augmentin, levaquin, doxycycline, and levaquin. In the end, I had no infection, but still could not breathe and had colored phlegm and a broken rib. I was histamine intolerant. I started methylation over a year later and it has not increased my histamine intolerance. In fact, during this time, my histamine intolerance has responded well to dietary changes. During that first year I exhausted my pulmonologist, since I reacted poorly to all the COPD-type meds, but I did react well to a week of prednisone, which I repeated every 1-2 months...all the while eating my high-histamine foods.

So, did the levaquin cause the histamine intolerance (or even secondary adrenal insufficiency), or was it coincidence? I don't know. I have not been able to find the pharmacists circular online for levaquin to see if any adrenal effects or histamine intolerance have been reported.

Histamine intolerance may be related to low cortisol also. I had the DAO homozygous mutation for 52 years before I became histamine intolerant. But I started having low cortisol symptoms, and/or increases in these symptoms, when I took the antibiotics. I just analyzed my ACTH stimulation test tonight, thanks to @Ema , and found that I have a good case for requesting a diagnosis of secondary adrenal insufficiency.

My course of action is to pursue the adrenal and digestive issues first, the thyroid next (now that I take synthroid, my morning temps are up but my T3 is down), and if there is residual histamine intolerance, address that then.

While there is no such thing as a histamine-free diet, I found some good guidelines and cut them into a document. I am totally off the COPD-type meds and can frequently survive without the OTC meds. The guidelines I found work for me (let me know if you want them). Others may need to eliminate tyrosine also, and that's much more strict. While it's good-bye to tomatoes, spinach, pepper, cheese, beer, wine, and salami, and of course, pumpkin pie, cinnamon, and cocoa, it's really good to breathe, and I have the hope that some day I will be healthy enough to have my tomatoes back.

I wish you health!
I was reading through what you said & I recall talking to a nurse at my drs. office who was put on synthroid. She said she wished she had gone on the Armour, because I think she said you can never get off synthroid.

My fibro doc has me on natural thyroid from ITC pharmacy in CO.
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
It is absurd to say a person can never get off Synthroid. Now a person may need to be on thyroid supplementation for life, but it is certainly possible, and most probably beneficial, for a person to switch to Armour or Naturethroid.
 

saint

Senior Member
Messages
218
Just repeating what the doctor's nurse said to 'me' - I have no medical training, so I don't know.
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Yes, you were clear that it was what the nurse said, I didn't mean to imply it was your absurd statement. What an uninformed statement for a health professional to make.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I was on synthroid for over 30 years. Started on thyroid glandular, but then synthroid was available and so it was. I was also, in retrospect, hypothyroid all those years. The reason I chose the GP I did when I collapsed w/ ME/CFS 11 years ago, was because he was the one willing to switch me to another form. I tried natural thyroid, and different combinations of T3/4, My reverse T3 was always a problem. Finally I came across Dr. John Lowe's work and switched to T3 alone, which has been a huge and wonderful change for me.

But here's the good news: During the year I've been on Freddd's Protocol, I've reduced my T3 from 60mcg to 30mcg. I don't bother at all with testing any more, and I noticed my doctor didn't even suggest it this week. John Lowe was very clear that treating it by tests, especially TSH, will generally not work. He was the first to help me break away from the whole notion of testing. I manage my situation by symptoms and self-testing body for supps and what to do next. This is how I've healed over the past 2 years.:)
 

saint

Senior Member
Messages
218
Sorry - don't want to pass on any incorrect info - Lord knows I've waded through a ton of it. Don't know anything about thyroid meds - but fibro doc put me on the natural thyroid. That & the natural adrenal support at 'least' helped me to become "semi-functioning". Hope you can wade through the morass to find your answers. To quote Dr. Teitelbaum again: "...people who have been through it know the holy hell of it..."
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
I just saw my endo last week and he did tests again. He said that he wouldn't change anything, according to the lab results. I guess that means he's happy with how it's converting. But I'm wondering...

My morning body temp is 97.2-97.4 pretty regularly on 50 mcg of synthroid. It's up from 96.4 before I started taking it. So, overall I'm feeling better...(actually MUCH better now that I'm also on 6 mg prednisone and 25-50 mg DHEA)...but I know I feel better when my morning temps are around 97.6 or higher. Last year I was put on BHRT for a couple of months, and while overall it was a bad experience, my temps were averaging 97.7 (and they dropped again when I stopped it.)

Another interesting data point is that my TSH has gone up from 0.8 to 1.8 in the last few months with no change in my dosages (except adding the DHEA). I know that both those numbers are in the normal range, but I wonder if we will see the trend continue.

As far as it goes, I'm happy to be on synthroid and prednisone and DHEA the rest of my life. If there's some way to get my parts to function as they should, I'd be willing to try it. But I feel like I've come back from the dead. (And much of it is thanks to my friends here at PR! Thank you!)
 

vortex

Senior Member
Messages
162
Mindy, thank you for the warning, but I am confused.

You never said what you were taking that you were warning us about ?

I read this whole thread but you only mentioned you were taking "methyl supplments"

Can you tell me what you were taking and how much ?

thanks !
 
Messages
38
Hi Mindy! Not sure if you're still around here or what, just wondering if you have an update on how everything has been going for you. Reading your thread with great interest as I peruse through the forums!
 

Gondwanaland

Senior Member
Messages
5,092
I suspect Mindy had metabolic acidosis from methylfolate raising purines/uric acid, just like I did and nobody thought of it at the ER when I went there for 3 times last year.
 

joejack102

Senior Member
Messages
133
Mindy, are you there? I noticed you haven't posted in 3 years, but I'm hoping you will get this message. I've had similar problems, and I think I can help. Which form of B12 were you taking? Methyl-B12 (methylcobalamin) or Regular B12 (cyanocobalamin)?