Anyone with Ehlers Danlos and chronic pain flare ups find a solution?
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@mostlylurking I’m okay to take it indefinitely, my only worry is that I’ll only get it prescribed once it hits over 4.5 tsh. Mines just under 3 and rising every half year. I’m very responsive to food though, I’ll go from 96.8 to 98.6 with a sweet meal, when I tried an online ndt it was more normalized but I don’t trust the product. I’ll discuss with a functional doctor. I actually know quite a few people with diagnosed hashimotos who’re only given something like 25mcg of levothyroxine… and obviously continue to have bad hypo symptoms. I suggest they ask for ndt but most people seem to thing nothing would work of the levo doesn’t
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
@mostlylurking she’s gotten the first vaccine, and I’ll just say it did not go well. I didn’t get it but schools were forcing it and all that. She’s never gotten silver fillings as far as she knows.
I’m in MA. I will try that approach, hopefully they’ll at least let me try some. I tried with thyroid online doctors and they refused under 5tsh too. I’ve actually felt pretty good on some NDT I ordered but I just don’t trust those non prescription products to be good.
I came across this article recently.
https://www.midwesterndoctor.com/p/the-hidden-link-between-hypermobility -
@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
I’m okay to take it indefinitely, my only worry is that I’ll only get it prescribed once it hits over 4.5 tsh. Mines just under 3 and rising every half year. I’m very responsive to food though, I’ll go from 96.8 to 98.6 with a sweet meal, when I tried an online ndt it was more normalized but I don’t trust the product. I’ll discuss with a functional doctor. I actually know quite a few people with diagnosed hashimotos who’re only given something like 25mcg of levothyroxine… and obviously continue to have bad hypo symptoms. I suggest they ask for ndt but most people seem to thing nothing would work of the levo doesn’t
Go research "hypothyroid symptoms" on line. Make a written list of your hypothyroid symptoms for your reference and take it with you to your doctor's appointment. Tell the new doctor about them. It would not be a smart idea to talk to the new doctor about your past "self medicating" and your experiences with it; it won't tell the doctor anything and they won't like the idea at all. It might get you thrown out of their office. Don't blather on about how sugar raises your temperature. Just tell them all your horrible no good very bad hypothyroid symptoms. Do NOT self medicate for a minimum of 2 weeks before you go to get your blood drawn. Do NOT take any biotin for 2 weeks before you get your blood drawn. And get the full thyroid panel of testing. Hold out for the product with the active T3 included; I like NP Thyroid by Acella. Educate yourself. Read the Ray Peat articles about hypothyroidism.
This site has good information. It hosts many of Ray Peat's articles. Read up. Learn about how the test is not calibrated correctly and how to understand the test results. If your free T3 is not in the upper part of the "normal" range and you're still symptomatic, ask the doctor to increase your medication dose.
If the new doctor refuses to let you have a thyroid med with T3 in it, walk out of there and go find a new doctor who will. Synthetic T4 doesn't work for most people.
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@Peatly Interesting article, thanks for posting. That photo of the person's thumb touching their wrist area brought back memories; I was like that when I was younger. I'm healthier now since I addressed my estrogen dominance and my hypothyroidism and my need for more thiamine, etc. I tried to see if I could still touch my wrist with my thumb; not even close.
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@mostlylurking I'm already trying to get in contact with a functional doctor. But my girlfriend feels in a pretty bad state right now. She normally takes an SNRI that keeps her body pain tolerable but it seems like it's not working well anymore, I'm not sure if it's adrenal fatigue or something like that, her serotonin on a blood test is basically zero. I wanted to know out of the supplements which one made a quick difference for you to feel less body pain and flare ups, the high dose thiamine?
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
I'm already trying to get in contact with a functional doctor. But my girlfriend feels in a pretty bad state right now. She normally takes an SNRI that keeps her body pain tolerable but it seems like it's not working well anymore, I'm not sure if it's adrenal fatigue or something like that, her serotonin on a blood test is basically zero. I wanted to know out of the supplements which one made a quick difference for you to feel less body pain and flare ups, the high dose thiamine?
Yes, the thiamine quickly resolved my pain and inflammation within 45 minutes of taking my first higher dose. I had been unable to resolve the pain with aspirin (500-650mg). I took around 300-350mgs of thiamine hcl, with water only, around 2:00pm (not within 30 minutes of eating). The pain/inflammation totally resolved quickly, along with my brain fog, and my body temperature increased a full degree to normal. This is when I realized I had a thiamine deficiency/functional blockage which was making me really sick.
If your girlfriend's pain is caused by estrogen inflammation from her diet and her pharmaceutical drug intake, thiamine might not help so well. However, it's entirely possible that the pharmaceutical drug is blocking her thiamine function and making her pain worse; many pharmaceutical drugs block thiamine. You can do a search for "the name of the drug" and "thiamine" and may find info about it. Please note that thiamine acts as a powerful antioxidant and resolves oxidative stress so it would probably be worth a try.
"She normally takes an SNRI that keeps her body pain tolerable"
SNRI:
"Serotonin-norepinephrine reuptake inhibitor (SNRI) medications are antidepressant drugs that doctors may prescribe to treat depression, anxiety, and some forms of chronic pain."Serotonin is NOT the "happy hormone". I think that serotonin is really bad stuff, from personal experience.
Ray Peat on serotonin written work
Ray Peat on serotonin audio"And serotonin does many of the harmful things that estrogen and prolactin do, including a direct cause of bone loss. People who take the fluoxetine type of antidepressants are seen to have a lot of premature bone loss because of the excess exposure to serotonin and the associated prolactin. And serotonin is, in a way, kind of a cofactor for estrogen. Estrogen increases serotonin systemically, and serotonin, in turn, increases the production of estrogen. So when one gets out of control, they both tend to become dominant. And serotonin is involved in the inflammations produced by..."
the quote above is from here:
https://bioenergetic.life/clips/a1ab2?t=1363&c=36
You can run the recording back and listen to the whole interview.There is a strong connection between serotonin overload and thiamine problems.
https://www.hormonesmatter.com/serotonin-syndrome-thiamine-connection/I am not a doctor and this is not medical advice.
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@notmcas okay thanks so much I’m hopeful. I’m really perplexed by the crazy low serotonin levels. I mean she does pretty well in Cyproheptadine so I was thinking maybe it’s blocking the effects of serotonin. Maybe the brain tissue is saturated so the snri keeps the blood level low. It’s definitely strange but we already ordered some thiamine at least. Her doctor wanted her to take serotonin as 5htp but I’ve been steering her away from it with fear that it makes things so much worse
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
okay thanks so much I’m hopeful. I’m really perplexed by the crazy low serotonin levels. I mean she does pretty well in Cyproheptadine so I was thinking maybe it’s blocking the effects of serotonin. Maybe the brain tissue is saturated so the snri keeps the blood level low. It’s definitely strange but we already ordered some thiamine at least. Her doctor wanted her to take serotonin as 5htp but I’ve been steering her away from it with fear that it makes things so much worse
My guess is that the "test" for serotonin levels doesn't really work. Everybody has serotonin; it is mainly in the intestine. Many doctors like to prescribe drugs that increase the level of serotonin because people have been told that it is the "happy hormone". It is not the happy hormone. It is highly inflammatory and causes major problems if elevated. Yes, serotonin will make the situation worse. The SNRI she is taking now increases serotonin. 5htp is very bad also. Learn about the dangers of serotonin by reading the articles I've already posted.
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@mostlylurking got it, I agree with this but the SNRI was really helping her a lot for a time. Actually I do think Ray meantioned that while harmful SSRI drugs can actually deplete serotonin to some extent contributing to its benefits. I hope now she has reason to get off it at least, and I was looking at that unique-e. Do you like the softgels or topical in oil? Ray's said that it can be a good anesthetic by reducing inflammation.
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@notmcas I use the pump Unique-E; I mix progesterone in it. I'm not taking just the vitamin E alone. Progest-E is the easy way to take the same thing I am taking.
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@mostlylurking said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
@Peatly Interesting article, thanks for posting. That photo of the person's thumb touching their wrist area brought back memories; I was like that when I was younger. I'm healthier now since I addressed my estrogen dominance and my hypothyroidism and my need for more thiamine, etc. I tried to see if I could still touch my wrist with my thumb; not even close.
Good to know this can be reversed. That thumb to wrist move used to be a fun party trick now it’s not so funny.
Your posts are helpful, here and the RPF, thank you.
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@Peatly said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Your posts are helpful, here and the RPF, thank you.
You're welcome. I'm so glad that I have the opportunity to try to help other people with what I've learned along this health journey.
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I just remembered some research I did last year on Ehlers Danlos. It may be caused by inability to utilize folate, and the solution is methylated folate.
https://www.sciencedaily.com/releases/2023/04/230410111650.htm
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
"You've got millions of people that likely have this, and until now, there's been no known cause we've known to treat," said Dr. Gregory Bix, director of the Tulane University Clinical Neuroscience Research Center. "It's a big deal."
Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.
The discovery could help doctors more accurately diagnose hypermobility and hypermobile EDS by looking for elevated folate levels in blood tests as well as the MTHFR genetic variant.
"Hypermobility is widespread and unfortunately under-recognized," said Dr. Jacques Courseault, medical director of the Tulane Fascia Institute and Treatment Center. "I'm excited about being able to treat the masses where people aren't going their whole lives being frustrated and not getting the treatment they need."
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You could try this
https://www.amazon.com/Opti-Folate-L-Methylfolate-Capsules-Optimized-Activated/dp/B07KPJ5PXS -
@Ecstatic_Hamster said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
Thank you for this article. I'll take a look at it. I went over to the supplement that you provided a link to. I also compared the product to others at pureformulas.com. I found this one which has the same amount of methyfolate for a whole lot more money. But it has fewer "added ingredients"; just 200mg of glycine, no excipients. I always like to read the product reviews for new supplements that I'm considering so I also read the reviews for both.
I'll mull this over a while before I purchase. Thanks again.
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Well, doesn't seem like the B1/Thiamine does much. Shes tried it for a bit, maybe it's best to explore a b complex. Also she got immediately worse after low dose naltrexone so she's pretty unwilling to go through with it.
Maybe a high dose of daily aspirin/k2 is a good idea? -
Thiamine need is driven by heavy metals
Treating symptoms with thiamine is allopathic thinking
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@questforhealth said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Thiamine need is driven by heavy metals
Treating symptoms with thiamine is allopathic thinking
What do you mean by that?
Multiple things cause problems with thiamine function and multiple things exacerbate thiamine deficiency. It is a complicated topic.
Hiding in Plain Sight: Modern Thiamine Deficiency
Cell damage through pentose phosphate pathway in fetus fibroblast cells exposed to methyl mercury
Fatty acid signatures connect thiamine deficiency with the diet of the Atlantic salmon (Salmo salar) feeding in the Baltic Sea This one shows that PUFA (causes oxidative stress) causes thiamine deficiency in spawning salmon. Adding thiamine to the water saved the salmon egg hatch.
My own mercury toxicity exacerbated my thiamine deficiency. Mercury causes high oxidative stress. Thiamine quenches oxidative stress. But continuously high oxidative stress can use up the available thiamine, causing deficiency. So high dose thiamine hcl has been extremely helpful for me. Since there is no safe way to get rid of the mercury, it seems to me that addressing the thiamine issue is a positive thing to do.
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Look at our thread about citrus pectin. I've been taking it and probably feel better than I have in years
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@questforhealth said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Look at our thread about citrus pectin. I've been taking it and probably feel better than I have in years
link?
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Bit sad to see learned helplessness on this forum, nature gave us all we need
no reason we should have to swallow b1 for our whole life