Rapid Deterioration?
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Desperate for any kind of help. Myriad of health issues. History of chronically increased cortisol levels ( stress related, no cushings). Many signs typically associated with cushings, with the worst being skin thinness followed by muscle and joint/bone weakness. Very underweight, difficulty putting on and maintaining weight bordering cachexic looking. Sensitivity to most foods, so that doesn't help. Indigestion/ GERD elicit arrythmias (SVT), so I must be careful with food intake. Sudden movements also can trigger this rhythm. Issues have been going on for years, but have hit breaking point and progressing rapidly. Skin rapidly becoming too thin to the point where almost every blood vessel is visible, new fine line wrinkles popping up seemingly every day (and this is no exaggeration). Can't even smile slightly without getting pretty severe redness in face and visible veins due to the thin skin. Petechiae everywhere, new moles popping up. Extremely dry hair and skin, regardless of hydration. I thought it was all attributed to cortisol issues, but recently I have a strong suspicion of ehlers danlos. Joints extremely unstable/ pop extremely loudly when manipulated. Internal organs feel like they're hanging on by a thread (possible hiatal hernia?) Severe social anxiety/uneasiness which causes a cortisol/adrenaline response. Took beta blocker for many years but weaned off few years ago. Thinking about restarting it to help mitigate some tissue/muscle damage from adrenaline. Neurological issues. I could go on further, but basically every organ system seems to be wasting away and quite rapidly at this point. Don't know what to do as I've become extremely sensitive to almost every food and even just eating causes fatigue. Don't know how fixable any of this is at this point, especially the collagen/ thin skin issues, as I've read that once skin has thinned out it can't really be regrown. Although maybe the bioenergetic theory says otherwise? Anyone have any knowledge on this or any of the other issues I mentioned? Any advice would be greatly appreciated. Thanks in advance.
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It's all reversible. Low pregnenolone creation from cholesterol is associated with wrinkles and fatigue, and your inefficient liver from lack of thyroid creates circulating estrogen and excess cortisol (which probably adds onto the fatigue). I've read glucocorticoids thin the skin, so that makes sense yours is thinning. Ehlers Danlos symptoms are a cause from estrogen and lack of vitamin K, and probably high PTH (from lack of vitamin D and calcium).
Not sure what you CAN eat but if you go on a diet of 2Ls of low fat milk, 1L of OJ, and an egg or two a day with some salt and you'll be generally okay for the time being for nutrients.
Progesterone directly suppresses cortisol and opposes estrogen. I'd definitely get progest-e. The rest is just restoring thyroid function, so this means no polyunsaturated fat intake, eating more foods with cholesterol, and if you're not into supplementing thyroid then vitamins B1 (high dose)/B3/B7 midday and the aspirin in the evening should be a game changer.
So:
- Fix your diet (see above)
- Calcium (from milk), Vitamin D and Vitamin K for ehlers danlos symptoms.
- Progesterone to lower cortisol.
- Vitamin B1/B3/B7 and aspirin to make sure you're using sugar properly.
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@izkrov Thanks for the advice. The cholesterol intake might be difficult as I also apparently have gallbladder issues. I will add some additional information in case anyone is interested to hopefully help elucidate the situation.
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The most recent labs have been relatively normal. Cortisol levels have actually lowered over the past few years and at this point are probably within the range of normal or borderline high ( probably not enough to be causing issues this substantially). Looking at family history more closely is what lead me to consider ehlers danlos, more specifically the vascular type possibly. Autoimmune type issues seem to have taken over ever since cortisol started to lower. Although inflammatory tests such as CRP, ESR are normal, antibody tests negative, so autoimmunity is probably out of the picture. In fact, ferritin levels were low also surprisingly, so inflammation seems unlikely. Estrogen total was normal, on the somewhat lower end of the scale actually. Both regular and ionized calcium normal. TSH was around 3.0 but then dropped to about 1.4 within like a month (still had symptoms). The most common trend seems to be high protein and albumin results Cortisol shredding through protein? Also, low lymphocytes occasionally. Anyone have any other ideas? Thanks again.
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Hi @Energia your situation sounds a lot like my situation. Anyway, I think getting your metabolism working is the main thing. So getting enough calories in to get the nutrients to start the healing process. B vitamins can be helpful but I would really br careful with high dosages since your in a catabolic state, getting enough calories is highest priority. So finding foods that sit well with you. It’s a tough battle, I know I’m fighting it as well
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Joint and skin weakness, try gelatin.
Stress issues, try inosine and salt supplementation. Test inosine for at least a month to gauge effect.
Underweight and low appetite, try cyproheptadine. Low dose, taken three times per day for best effect.
Indigestion / GERD, try ACV capsules with each meal. Among other effects, this may kill any H. Pylori.metabolomics testing: iollo.com (you will only get useful info about the biomarkers that are in their reports though, not all of them)(Y Combinator funded company)
DNA testing: whole genome at sequencing.com (recommended by Chris Masterjohn PhD) can show Ehlers Danlos. -
@Energia said in Rapid Deterioration?:
The most recent labs have been relatively normal. Cortisol levels have actually lowered over the past few years and at this point are probably within the range of normal or borderline high ( probably not enough to be causing issues this substantially). Looking at family history more closely is what lead me to consider ehlers danlos, more specifically the vascular type possibly. Autoimmune type issues seem to have taken over ever since cortisol started to lower. Although inflammatory tests such as CRP, ESR are normal, antibody tests negative, so autoimmunity is probably out of the picture. In fact, ferritin levels were low also surprisingly, so inflammation seems unlikely. Estrogen total was normal, on the somewhat lower end of the scale actually. Both regular and ionized calcium normal. TSH was around 3.0 but then dropped to about 1.4 within like a month (still had symptoms). The most common trend seems to be high protein and albumin results Cortisol shredding through protein? Also, low lymphocytes occasionally. Anyone have any other ideas? Thanks again.
Dr. Gupta AI (created by Martin Shkreli) says "High protein levels can be caused by various factors including dehydration, infections, inflammation, or liver or kidney disease."
Have you tested GFR? Also lactate would be a good test in general.
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@Energia measuring estrogen levels via blood samples may lack accuracy due to potential tissue accumulation of estrogen. In conjunction with the prior recommendations, I propose considering the addition of T3, cyproheptadine, aspirin, and micro-dose antibiotics. For those not in perimenopause or menopause, topical progesterone application during the luteal phase may be beneficial.
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@BartL Hi, Im sorry to hear you're going through something similar. I would be curious to know if you have been diagnosed with ehlers danlos or just have a similar set of symptoms that you haven't received a diagnosis for? You're right about getting enough calories, but that's easier said than done lol. Nonethless, discipline and patience is probably key in this healing journey.
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@basebolt GFR and lactate were normal. What you mentioned about dehydration may be the case. It seems as though, interestingly, I can get hydrated, but also dehydrated relatively easily. My theory, although I don't know how plausibly it is, is the skin has gotten so thin that it's losing water through evaporation more quickly than what would be normal. Anyway, thanks for the info!
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@Emilia Yes, that's a good point. I should look into getting tissue levels of estrogen tested for. Some of the things you mentioned, I have already tried, but probably need to be more consistent with it.
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@Emilia My progesterone levels were actually low, so I've recently started supplementing it. Do you have personal experience using it, and if so, what dose typically works best for you?
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@Energia I hope you will feel better.
I take one drop of progesterone three times per day during the luteal phase of my cycle and would sometimes apply an extra drop on my face as well. -
@Energia These abnormal parameters need to be evaluated, considering other parameters such as VBG, FBC, urea and electrolytes profile, and perhaps a liver panel.
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@Energia do you follow a 'good' skincare routine?
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@Emilia whats a good skincare routine ma'am?
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@Energia said in Rapid Deterioration?:
Desperate for any kind of help. Myriad of health issues. History of chronically increased cortisol levels ( stress related, no cushings). Many signs typically associated with cushings, with the worst being skin thinness followed by muscle and joint/bone weakness. Very underweight, difficulty putting on and maintaining weight bordering cachexic looking. Sensitivity to most foods, so that doesn't help. Indigestion/ GERD elicit arrythmias (SVT), so I must be careful with food intake. Sudden movements also can trigger this rhythm. Issues have been going on for years, but have hit breaking point and progressing rapidly. Skin rapidly becoming too thin to the point where almost every blood vessel is visible, new fine line wrinkles popping up seemingly every day (and this is no exaggeration). Can't even smile slightly without getting pretty severe redness in face and visible veins due to the thin skin. Petechiae everywhere, new moles popping up. Extremely dry hair and skin, regardless of hydration. I thought it was all attributed to cortisol issues, but recently I have a strong suspicion of ehlers danlos. Joints extremely unstable/ pop extremely loudly when manipulated. Internal organs feel like they're hanging on by a thread (possible hiatal hernia?) Severe social anxiety/uneasiness which causes a cortisol/adrenaline response. Took beta blocker for many years but weaned off few years ago. Thinking about restarting it to help mitigate some tissue/muscle damage from adrenaline. Neurological issues. I could go on further, but basically every organ system seems to be wasting away and quite rapidly at this point. Don't know what to do as I've become extremely sensitive to almost every food and even just eating causes fatigue. Don't know how fixable any of this is at this point, especially the collagen/ thin skin issues, as I've read that once skin has thinned out it can't really be regrown. Although maybe the bioenergetic theory says otherwise? Anyone have any knowledge on this or any of the other issues I mentioned? Any advice would be greatly appreciated. Thanks in advance.
Magnesium lowers cortisol. see here: Magnesium Status and Stress: The Vicious Circle Concept Revisited
Your description above sounds like thiamine deficiency/beriberi. see here: https://www.hormonesmatter.com/thiamine-deficiency-in-modern-medical-practice/
also:
Hiding in Plain Sight: Modern Thiamine DeficiencyThiamine and magnesium work together in the body. Supplementing thiamine improves tolerance for magnesium.
see also: https://www.multibriefs.com/briefs/icim/thiamin.pdfHypothyroidism symptoms and thiamine deficiency symptoms have some similarities because each of these block oxidative metabolism. It can get confusing. Also, the thyroid needs thiamine to do its job.
Ray Peat explained that adrenaline is released when blood sugar gets too low which is supposed to signal to the liver to release stored sugar into the blood stream. If the liver is unable to store sugar it won't be able to release any. If that happens, then cortisol is released to dissolve body tissues to provide glucose to the heart and brain. The liver needs thiamine to work properly. If there's a thiamine deficiency, the liver can't do a good job of storing sugar etc.
In addition, the mitochondria need thiamine to burn glucose for cellular energy. If this process is blocked (from no thiamine), then from the body's perspective there is a lack of glucose getting turned into energy. This can cause the release of adrenaline, then cortisol, resulting in tissue wasting.
