• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Which to treat first: adrenals, thyroid or methylation cycle?

RosieBee

Senior Member
Messages
104
Location
UK
Hi Justy,
Sounds like a similar story to mine (metal toxicity too). I feel that all these things are inter-related so cannot really be addressed individually. I also recorded my daily average temperature (see Dr Rind's website and Stop The Thyroid Madness pages on this) which confirmed the adrenal problem and reconfirmed the hypothyroid.

So I hope that when I get some success with lifting the methylation block, I might then get a better response to thyroid support with adrenal support already in place. Sounds like a bit of a juggling act!

I posted here originally to help me sort out where I should start. People have been very helpful and I feel much clearer about it now.

Good luck with your journey. You must let us know how it goes.
RosieBee
 

Rosebud Dairy

Senior Member
Messages
167
@RB,

I have been on methylation protocol for about six weeks, and stopped my T3 about a month ago.

I DID do thyroid and hydrocortisone for a couple of years.

I do have a single C677T, and now treating mainly that. Have not examined other genetics other than HLA DR/DBQ - if you have a mold or Lyme gene - look out! I am mostly working out my issues with folic acid and folinic acid now.

Seems that my low Free T3 for years could be at least partly caused by my methylation issues, but I do not know for sure.

I am on a trial with no T3 med now, and my temps have dropped some, so I am still watching and waiting. My doc and I figure that I would gradually slide back into a state of low T3 if we are not treating all that needs to be treated. I am just about her only patient doing this kind of protocol, so she is excited, but not well-experienced.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I havent had my metal toxicity status checked yet - i dont trust the hair ones and dont fancy a provocation with a chelating agent - which was offered to me by my doc.
I also did the temp test - a number of times over the years and although my TSH was 1.5-3 and my T4 about 14 i always had a very low body temp - somewhere in the region of 96, sometimes a tad lower, plus a whole heap of thyroid looking problems. I was so dissapointed that the thyroxine didnt work out, i had big hopes for it. Now tho i am doing MB12 injections every day and they are helping a lot, along with transdermal minerals and iron. I am trying to address my hormone imbalances and adrenal support with the herbalist whcih mt M.E doc really supports.
Onwards and upwards! Justy.

Hi Justy,
Sounds like a similar story to mine (metal toxicity too). I feel that all these things are inter-related so cannot really be addressed individually. I also recorded my daily average temperature (see Dr Rind's website and Stop The Thyroid Madness pages on this) which confirmed the adrenal problem and reconfirmed the hypothyroid.

So I hope that when I get some success with lifting the methylation block, I might then get a better response to thyroid support with adrenal support already in place. Sounds like a bit of a juggling act!

I posted here originally to help me sort out where I should start. People have been very helpful and I feel much clearer about it now.

Good luck with your journey. You must let us know how it goes.
RosieBee
 

RosieBee

Senior Member
Messages
104
Location
UK
@RB,

I have been on methylation protocol for about six weeks, and stopped my T3 about a month ago.

I DID do thyroid and hydrocortisone for a couple of years.

I do have a single C677T, and now treating mainly that. Have not examined other genetics other than HLA DR/DBQ - if you have a mold or Lyme gene - look out! I am mostly working out my issues with folic acid and folinic acid now.

Seems that my low Free T3 for years could be at least partly caused by my methylation issues, but I do not know for sure.

I am on a trial with no T3 med now, and my temps have dropped some, so I am still watching and waiting. My doc and I figure that I would gradually slide back into a state of low T3 if we are not treating all that needs to be treated. I am just about her only patient doing this kind of protocol, so she is excited, but not well-experienced.

You are very fortunate to have a doctor who is willing to go down this route, even if she is inexperienced. A steep learning curve for her; lots of useful, informed information here. Did you try the Circadian T3 protocol? I understand it is supposed to help if you have impaired adrenals without lots of hydrocortisone, by splitting T3 doses and timing the first one very early in the day to compliment the body's natural circadian rhythm.

I haven't done any genetic testing. That would be so good to know what you are working with. I do know I have a couple of genetic impairments as a result of DNA adducts.

Maybe the temperatures will improve as you move out of the initial phase of lifting the methylation block.

Good luck with your progress.
RosieBee
 

RosieBee

Senior Member
Messages
104
Location
UK
It seems that TSH is not always a great indicator of hypothyroidism for a number of reasons, especially when the symptoms persist. I was also disappointed that the thyroid supplementation failed so badly. I wonder if this is a common pattern for people with ME: to be hypothyroid and not respond well to thyroxine/ natural thyroid supplements? I am keeping my fingers crossed that when the methylation block is lifted then I can start to heal the thyroid and adrenals more effectively.Good luck with the hormone/adrenal support. RosieBee
 
Messages
39
Location
Bay Area, CA
Hi Rosiebee, i had a similar problem with thyroxine (my TSH wasnt as high as your tho - it was diagnosed as subclinical hypothyroidism by my M.E doctor) The doctor who prescribed it said that my test results didnt move much after a while on it so we upped the dose and i got hyperthyroid symptoms immediately, even tho my bloods werent budging. I also piled on a lot of weight which has never budged (we were hoping it would help with the endless weight gain) In the end i had to stop it as it wasnt doing anything a t alower dose, my
Dr explained that intolerance to thyroxine could be caused by either
1. Adrenal problems, in which case you need to address this first.
2. a heavy metal build up (i think in the heart? she qouted me some research about this but i forgot it)

I had the exact same experience on natural thyroid meds! My TSH was around 3.0, FT4 was a little under range, and FT3 was barely in range BUT I had both types of antibodies tested multiple times across the span of 2 years and never tested positive for antibodies. My ND put me on natural thyroid anyway and by the time I hit two grains, I thought I was going to die. I started having symptoms I've never had before: joint pain, hair loss, weight gain, muscle weakness, severe depression, tachycardia, etc. It was horrible! But, my blood tests never showed anything. My FT4 and FT3 did not budge at all from their initial levels and my TSH went to .9, which is far from hyperthyroid. It felt wrong to take thyroid hormone when I knew I didn't have organic auto-immune thyroid disease. I kept wanting to know what was causing my low thyroid since it wasn't Hashi's or Graves, but ND just wanted to medicate me. I wish I had listened to my instincts, those were some of the worst 6 months of my life...

I don't have adrenal problems, I've also been tested multiple times for that. But, I do have some trouble with toxin build-up, including some metals (though I've never had a mercury amalgam). My current doctor believes that my body is just poor at excreting toxins or metabolic waste (including hormones like estrogen). That is why I'm doing the methylation protocol. I'm hoping that if I can get my methylation and detox systems going that my thyroid will perk up on its own.
 

RosieBee

Senior Member
Messages
104
Location
UK
Good luck Iolasana. It seems that there are quite a few people who have had problems with thyroid supplementation and are trying to sort it out by doing the methilation protocol. Like you I hope that once I can get methylation and detox systems functioning more normally I will have more success with thyroid and adrenal support.

Good luck all!
 

Rosebud Dairy

Senior Member
Messages
167
@ RosieBee
---My TSH was always normal during the worst and sickest part even

We just did straight T3 in high morning doses (Lowe), and I think that might have helped crash out my adrenals. I was her very first patient.
I later switched to multidosing, and then finally started showing hyper symptoms, so I reduced and reduced until I had started the MTHFR protocol.
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
Hi, RosieBee.

You mentioned that your cortisol is high. In the simplified treatment protocol, for high cortisol I suggest including the phosphatidylserine complex. For low cortisol, I suggest using lecithin instead.

Best regards,

Rich

hi Rich

I was wondering if you can recommend any other natural supplement for low cortisol other than lecithin? I am low cortisol and also have depression and choline sources like lecithin make my depression worse, which from what I understand is not all that uncommon a reaction from additional choline. I have tried licorice before in the past and was aware of needing to cycle it, and even though it did help, I do not want to keep taking that because of it's estrogenic properties. Thanks for any input you may have.
 

RosieBee

Senior Member
Messages
104
Location
UK
Just wanted to post a quick update:

I have just had TSH (thyroid stimulating hormone) result back that is now down to 2.5 from 5.3; That is the lowest TSH I have had in years.

I have been following Rich's simplified protocol for nearly 3 months, with additional riboflavin, changed Acetyl-L carnitine for carnitine fumarate and changed ubiquinone for ubiquinol (these three were to address deficiencies shown up by metabolic profile test). I have not had adverse symptoms of virus-load clearing, but have had up and down periods, but getting 'good' days from time to time. I usually feel best on the days I am doing the cutler metal detox protocol, possibly because I take large amounts of vitamin C on a 3-hourly basis on those days.

I have seen Dr Peatfield for help and support with adrenals and just starting that now. I feel this will compliment any benefits I am getting from the methylation protocol. I hope that I will get enough improvements that the hypothyroidism will just resolve itself.

Just wanted to share the good news and say thanks for the advice and support. It really helps!
 

RosieBee

Senior Member
Messages
104
Location
UK
Too right Nanonug. A long way to go yet. Just confirming the advice I was given here, to concentrate on the methylation cycle first, and the thyroid should improve on its own. It seems it was good advice!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I have been thinking of trying to sort our Reverse T3, which is treated with t3 thyroid for several weeks to a few months, this is suppose to help burn of the RT3 and allows our hormones to work properly.
Anyone else had much to do with RT3, some more info and experience would be appreciated.

cheers!!!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I have been thinking of trying to sort our Reverse T3, which is treated with t3 thyroid for several weeks to a few months, this is suppose to help burn of the RT3 and allows our hormones to work properly.
Anyone else had much to do with RT3, some more info and experience would be appreciated.

cheers!!!

I did this protocol and also moderated on a site devoted to this protocol. If you have questions or are looking for a place to start, I'm happy to help.

Have you had recent thyroid labs, specifically FT3 and RT3?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I did this protocol and also moderated on a site devoted to this protocol. If you have questions or are looking for a place to start, I'm happy to help.

Have you had recent thyroid labs, specifically FT3 and RT3?

My recent labs show good TSH, t3 and t4, havent had RT3 done. my body temp is always low under 36c although it did come up some for awhile treating adrenals with dhea and pregenolone which i am still doing. T3 is the next thing im thinking of.
Ema if u have some links would be could and maybe a short speel on it for everyone to read would be great. Maybe should start a new thread on RT3?

cheers!!!
 

Lotus97

Senior Member
Messages
2,041
Location
United States
from what i have read, do the adrenals first as this can sometimrs fix thyriod issues, also test reverse t3, look into getting cortisol down with supps like phosphatidylserine. and try get dhea up but do it slowly 10mg increments, also if need to medicate to get good sleep.
I agree about the sleep. I don't know the extent of my adrenal problems beyond abnormal cortisol levels and I'm still waiting for more thyroid tests, but I made a significant recovery during a period where I was getting a lot of sleep. I also made sure to get plenty of rest during the day and tried to limit sources of stress.

I would recommend being cautious with methylation because if done incorrectly it can put a lot of stress on your body. Taking higher doses doesn't necessarily mean you'll heal quicker. It can be counterproductive in fact. You should also be addressing ATP and the Krebs Cycle in conjunction with methylation treatment or as an alternative to methylation.
 
Messages
54
Location
Montreal, Canada
I would go along with the idea of starting up methylation first with all the rest following. As mb12/metafolin will start up methylation in 24 hours or less withg essentially 100% certainty, confiming that with low potassium from cell formation within a few days, hundreds of symptoms can resolve in the next year leaving a much smaller set of problems to deal with that are far cleared because the mb12/adb12/Metaffolin healing will make seeing the remaing problems much simpler.

Freddd, you say " hundreds of symptoms can resolve in the next year " Is a year a reasonable length of time to expect this to take? My MCV is still 107 and I have low RBC and Platelets even after 6 months of Rx
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I have been on methylation protocol for about six weeks, and stopped my T3 about a month ago.
...
I am on a trial with no T3 med now, and my temps have dropped some, so I am still watching and waiting. My doc and I figure that I would gradually slide back into a state of low T3 if we are not treating all that needs to be treated.
Rosebud Dairy, were you able to stay off of the T3 during/after the methylation protocol?
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Velha took 6 months to recover from CFS using Freddd's protocol, and in 8 months she got a job and resumed her life. She followed Fredd's protocol (starting with tiny amounts of the methylation supplements for the first month or so) and had to tweak it to about 5mg L-Carnitine Fumarate / day (Drs Best, she said other brands were not active) and she also used garlic and olive leaf and (maybe) oil of oregano to get rid of gut issues. She did not take TMG. I think she could have dispensed with some/all of the carnitine if she had tried TMG, but she found what worked and went on. It worked for her sister too.