Anyone with Ehlers Danlos and chronic pain flare ups find a solution?
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@mostlylurking That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?
Vitamin E and progesterone work in similar ways.
Ray Peat on vitamin E and progesterone, interviewsHas your girlfriend removed all polyunsaturated fats (PUFA) from her diet? The body stores PUFA in the fat cells for years. Taking some niacinamide (smaller doses, several times/day) help with the PUFA problem.
Ray Peat on Niacinamide, written work
Ray Peat on niacinamide and free fatty acids, interviews -
@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...
Does your girlfriend have any silver fillings?
NP thyroid (a prescription natural desiccated thyroid product) would work better for anyone, I think. Synthetic T4 is really lousy stuff. Personal opinion. Your doctor sounds clueless. Trying to "game the test" really is a terrible idea. If you are not happy with the doctor, (I wouldn't be from what you've said here) you should find a better one. Think of doctors as shade tree mechanics (that's probably an insult to shade tree mechanics).
See this Ray Peat article -
@mostlylurking She has not removed all PUFA but doesn't have silver fillings. I think mold might have been a big contributor since she's lived in moldy homes and has flare ups before rain or after snow melt. I'm not sure what to do for mold toxicity at this point though. It was why I was considering the flowers of sulfur as per ray's suggestion for candida or fungal infections.
For the doctor issue, I mean I've tried another and a few online doctors. They basically say if tsh is not above say 4.5 or 5 they will not consider any treatment. Even when I asked my primary care if I could pay out of pocket for a thyroid test he got angry with me and said I didn't need that and prescribed me statins that I refused. I guess I could try an endo?
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@notmcas Ask your local pharmacists which doctors prescribe NP Thyroid by Acella. It is a very common medication. It is the one pharmacists use to fill prescriptions for desiccated thyroid that do not specify the brand; it is used for the "generic" catagory.
You need to find a reasonable doctor. Read the Ray Peat Thyroid article. Take it to heart. Understand that there really are doctors who understand hypothyroidism, you just have to find one. You need a good doctor that is willing to test you every 6-8 weeks for several months in order to optimize your medication amount (my own took 9 months).
@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
She has not removed all PUFA but doesn't have silver fillings.
PUFA is estrogenic and toxic. It is making her sicker. She needs to understand this and banish all of it from her diet. Taking small doses of niacinamide throughout the day would be helpful.
Ray Peat on PUFA written work
Ray Peat on PUFA audioHas she EVER had silver fillings? Did she have any when she was a child? Was she ever around when a mercury thermometer was broken or in the building where it happened? Was she ever around when a fluorescent light tube or bulb was broken?
I lived through many years of being super sensitive to mold. It would make me almost catatonic. I'm not that way anymore. Removing all toxins from her environment (including pufa) will be helpful. Getting her high estrognen down and under control will be helpful. These things will take some of the burden off of her immune system so that it will be better able to function more normally.
Is she vaccinated? For covid?
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
For the doctor issue, I mean I've tried another and a few online doctors. They basically say if tsh is not above say 4.5 or 5 they will not consider any treatment.
This is the mind set of doctors in the United States who cow-tow to the American Thyroid Association. They have hijacked the industry. I believe it's criminal what they are doing. Their policies massively increase the number of lucrative (really sick) customers for the American Medical Industrial Complex.
Which country are you located in? If in the US, which state?
Have you considered a Functional Doctor? Or a doctor that practices Orthomolecular medicine?
Find a Doctor via the NP Thyroid/Acella website
Have you asked your local pharmacists which doctors in your area prescribe NP Thyroid by Acella? I still contend that this is the fastest way to find a doctor that has some clue about treating hypothyroidism.
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@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.
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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.
OK. The "vax" may well be exacerbating her problem. The FLCCC has protocol that may be helpful.
The pharmacists aren't going to let you "try some". But they will be happy to tell you which doctors are ordering prescriptions of NP Thyroid for their patients that practice medicine in your area.
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
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.
Here is a link to Dr. Peter McCullough's protocol:
Dr Peter McCullough: How to Detox Spike Protein from Body (November 2023)I am not a doctor and this is not medical advice.
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@notmcas Thank you, I can't say that the vaccine has made her any worse really since before it. But someone else was very affected.
I more meant that maybe a doctor could give a trial dose. But I think you have to be an MD to prescribe both NDT and synthroid. I will try through the Acella doctors or pharmacy though, maybe my dad get get it at least since his temps and pulse are so obviously low.
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@notmcas Do you want to get well? A trial dose is not going to be helpful. It takes months of titrating the dose up to your optimum dose. You need a doctor who is familiar with treating people with desiccated thyroid who understands the procedure. It would be very helpful if you understood the procedure. So please read the Ray Peat articles that I posted earlier. The Broda Barnes book would also be helpful reading.
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@mostlylurking Yes, I just thought that with a trial dose I could prove to the doc that my "dangerous cholesterol" would improve with some thyroid. I know I have to keep taking it at least until I detox from pufa and my diet is good, it's more to convince them to allow me to keep using it. I did reach out to a functional doctor for us both so fingers crossed.
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Yes, I just thought that with a trial dose I could prove to the doc that my "dangerous cholesterol" would improve with some thyroid. I know I have to keep taking it at least until I detox from pufa and my diet is good, it's more to convince them to allow me to keep using it. I did reach out to a functional doctor for us both so fingers crossed.
If you are dealing with a reasonably informed doctor (who has the sense to prescribe desiccated thyroid), he will know from your first test (assuming it has similar numbers as the ones you posted here) that you have hypothyroidism and that treating the hypothyroidism will normalize your cholesterol. The medical industry has known at least since the 1940's that this is the case; that hypothyroidism results in high cholesterol and treating hypothyroidism normalizes cholesterol. If the doctor is reasonably informed and already uses desiccated thyroid to treat his patients, you won't have to do anything but let them run a full panel thyroid test. That test will convince the doctor. Who else do you think you need to convince so you can keep getting treatment? Go read the Ray Peat article.
from the linked article:
"Barnes experimented on rabbits, and found that when their thyroid glands were removed, they developed atherosclerosis, just as hypothyroid people did. By the mid-1930s, it was generally known that hypothyroidism causes the cholesterol level in the blood to increase; hypercholesterolemia was a diagnostic sign of hypothyroidism. Administering a thyroid supplement, blood cholesterol came down to normal exactly as the basal metabolic rate came up to the normal rate. The biology of atherosclerotic heart disease was basically solved before the second world war."Please don't assume that if you stop eating PUFA and change your diet your hypothyroidism will magically disappear. Even if it all hinged on the PUFA content of your body (it doesn't), it takes at least four years for your body to detox the pufa that's already stored in there, assuming you don't eat any more of it.
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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