Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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First try at Active Protocol and have questions.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by JasonUT, Mar 3, 2017.

  1. JasonUT

    JasonUT Senior Member

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    Endo Doc Notes 11/16/2017:
    1. He's confused. Called me a Zebra among horses. However, he likes the challenging cases and seems excited to dig deep. He believes some kind of adrenal dysfunction is occurring.
    2. He brought up concerns with Celiac, High Glucose levels, insulin sensitivity, and Autoimmune.
    3. Acknowledged that there is adrenal insufficiency that can occur somewhere between Normal and Addison's. Didn't elaborate much, but is interested in digging deeper to understand root-cause.
    4. Ordered some tests: ACTH stimulation tests, LH, Cortisol, Osmolality, Testosterone
    5. Simple water deprivation test with morning urine samples to evaluate possibility of diabetes insipidus
     
    Last edited: Nov 17, 2017
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  2. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT @ljimbo423

    While licorice root can help with the low aldosterone problem, note that using it may skew adrenal test results.

    I found that taking licorice averted an adrenal crisis (in myself) which can be quickly fatal. I had to take it for almost half a year because my adrenals went back to crisis mode if I started to taper off. (See symptoms of adrenal insufficiency.) Be wary of potassium - with low aldosterone on board the kidneys excrete salt and water and hoard potassium (the opposite of normal function.) This can put one in a very dangerous state of high potassium and dehydration and affects one at the cellular level. I subsequently tapered off and only occasionally take it when I feel that I've overdone physical capacity and especially if I'm craving salt.

    Having licorice on hand and using it has saved my life more than once. You can deteriorate so fast that there is no time to even call for help and you can quickly lose verbal and mental capacity as well.

    https://bottomlineinc.com/health/fatigue/tired-dizzy-craving-salt-could-be-low-aldosterone

    Adrenal Insufficiency (Addison's Disease) | Disorders | Knowledge Base
    https://pituitary.org/knowledge-base/.../adrenal-insuffieciency-addison-s-disease
    Aldosterone belongs to a class of hormones called mineralocorticoids, also produced by the adrenal glands. It helps maintain blood pressure and water and salt balance in the body by helping the kidney retain sodium and excrete potassium. When aldosterone production falls too low, the kidneys are not able to regulate ...

    Adrenal crisis - an overview | ScienceDirect Topics
    www.sciencedirect.com/topics/medicine-and-dentistry/adrenal-crisis
    Adrenal crisis is primarily a manifestation of ...adrenal insufficiency, because hypotension is caused mainly by mineralocorticoid deficiency exacerbated by low glucocorticoid levels.

    Chronic Fatigue Syndrome Treatment Guide, 2nd Edition
    https://books.google.com/books?id=mQ4b_GMFgoIC
    Erica Verrillo
    In CFS/ME, licorice is reputed to alleviate symptoms associated with adrenal insufficiency (intolerance to heat, cold, noise, and other stimuli, low blood pressure, faintness). Because the action of licorice's main active chemical, glycyrretinic acid (GA), resembles that of the adrenal hormone aldosterone, licorice helps the body ...

    Hyponatremia and hyperkalemia in adrenal insufficiency - UpToDate
    https://www.uptodate.com/.../hyponatremia-and-hyperkalemia-in-adrenal-insufficienc...
    May 24, 2017 - The electrolyte disturbances in primary adrenal insufficiency are due to diminished secretion of cortisol and aldosterone (see). A major function of aldosterone is to increase urinary potassium secretion. As a result, hypoaldosteronism can be associa.

    Adrenal Insufficiency: Still a Cause of Morbidity and Death in ...
    pediatrics.aappublications.org/content/119/2/e484
    by DI Shulman - ‎2007 - ‎Cited by 166 - ‎Related articles
    Hyponatremia and hyperkalemia are common in primary adrenal insufficiency because of deficient aldosterone secretion. Hypoglycemia is common in both primary and secondary adrenal insufficiency. Hyponatremia may also be seen in secondary adrenal insufficiency because of water retention from lack of cortisol to ...

    Licorice for Adrenal Fatigue - AdrenalAdvice.com
    www.adrenaladvice.com/licorice-adrenal-fatigue.shtml
    Because of low aldosterone, people with low adrenal function would typically have low sodium and high potassium.8. Even an article from the Nation Institute of Health is about Adrenal Insufficiency mentions salt craving as a symptom8. So licorice should correct low sodium and high potassium for those with adrenal ...

    Treating Adrenal Insufficiency and Hypotension with Glycyrrhiza ...

    https://restorativemedicine.org/.../treating-adrenal-insufficiency-and-hypotension-with...
    Sep 1, 2012 - Licorice (Glycyrrhiza glabra) can be used to treat certain low blood pressure conditions. Because it can correct low potassium levels via effects on adrenal enzyme systems and support healthy adrenal function and aldosterone metabolism, Glycyrrhiza is primarily used to treat orthostatic hypotension.

    Hyperaldosteronism - Hormonal and Metabolic Disorders - Merck ...
    https://www.merckmanuals.com › ... › Adrenal Gland Disorders
    Learn about the causes, symptoms, diagnosis & treatment of Adrenal Gland Disorders from the Home Version of the Merck Manuals. ... Eating large amounts of real licorice can cause all the symptoms of hyperaldosteronism. Real licorice contains a chemical that can act as though there is too much aldosterone. However ...
     
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  3. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT I think you may really benefit from eating liver. Liver has a good amount of true vitamin A - important since carotene converts poorly to vitamin A...and B vitamins...

    Liver contains a large amount of high-quality protein, an easily absorbed form of iron, all of the B vitamins (including B12 and folic acid in significant amounts), balanced quantities of vitamin A, many trace elements and minerals including copper, zinc, chromium, phosphorous and selenium, essential fatty acids EPA, DHA ...
    Benefits of Eating Liver: 10 Questions Answered - Radiant Life Blog
    https://blog.radiantlifecatalog.com/bid/.../Benefits-of-Eating-Liver-10-Questions-Answer...

    The Liver Files - The Weston A. Price Foundation
    https://www.westonaprice.org/health-topics/food-features/the-liver-files/
    Jul 29, 2005 - So what makes liver so wonderful? Quite simply, it contains more nutrients, gram for gram, than any other food. In summary, provides:...

    Within an hour of eating liver you may experience huge waves of relief and refreshment as you body begins to absorb and utilize the much needed nutrients in this nutrient treasure chest. It's hard to explain how good it made me feel when I first started eating it - life was coming back. Some people describe it as a high. For me it was like a desperate dying person in the desert finally getting water and nutrients returning me to life.

    I ate so much liver over a couple of months my doctor was quite alarmed and tested my vitamin A levels. The results? I finally just began to approach the normal range in vitamin A. I ate sometimes two or more slices of beef liver and onions per day, or else took the liver capsules below:

    Radiant Life’s Desiccated Liver is highly recommended by me as it is grass-fed beef liver from Argentina, "raised free from hormones, antibiotics, and pesticides... Made without introducing heat, solvents, deodorizers, bleach, and refining. Regularly tested for purity." Further if you hate the taste of liver, the capsules make consumption easy.

    Beef Liver Nutrition Information | LIVESTRONG.COM
    https://www.livestrong.com › Diseases and Conditions
    Eat your liver, it's good for you,” may be the understatement of all time. In 1934, three physicians won the Nobel Prize in Physiology...
     
  4. Gondwanaland

    Gondwanaland Senior Member

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    Careful with vit D depletion
     
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  5. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT As noted by Gondwanaland, vitamins A and D balance each other. Are you getting enough sunshine and/or supplementing vitamin D? These days many doctors are onto vitamin D deficiencies and test for them. Have you tested for vitamin D?

    Beef liver does contain some vitamin D; an estimated:
    Beef Liver (braised), 3½ oz. 12-30 IU

    However, it is no where near the amount of vitamin D found in unprocessed (vitamins not removed) cod liver oil;
    which is an estimated:
    Cod liver oil, 1 Tbsp 1,360 IU

    Source: https://www.betterbones.com/bone-nutrition/fact-charts-vitamin-d/
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    That would be vit D2, not the desired D3
     
  7. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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  8. JasonUT

    JasonUT Senior Member

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    @Chocolove @Gondwanaland Some good thinking.

    I am chave been taking 6000 IU Vit D3 per day for many months. Before that I was taking 3000 IU per day.

    My latest labs:
    Vitamin D, 25 OH: 68 (Reference range for Optimal 30 - 100 ng/ml)
    Vitamin D3 (Cholecalciferol) SpectraCell: 60 (Reference Range >50%)
    Vitamin K2 SpectraCell: 46 (Ref Range > 30%)
    Vitamin A SpectraCell: 74 (Ref Range >70%)
     
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  9. JasonUT

    JasonUT Senior Member

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    Unfortunately, I ended up in the ER last night. Dehydration despite drinking ~160 oz of water with added electrolytes and salt. I typically drink 80-100 oz of water with added electrolytes and salt per day. I couldn't satisfy my thirst or relieve my dry throat or mouth. They gave me 2 liters of saline and that helped.

    BUN = 35 (Ref Range 5-20) This is the highest I have ever had.
    Creatinine = 1.2 (Ref Range 0.6 - 1.3)
    MPV = 10.7 (Ref Range 6.8 - 10)
    Sodium = 139 (Ref Range 135 - 143)
    Potassium = 3.8 (3.5 - 5.1)
    Chloride = 101 (Ref Range 98 - 110)
    Calcium = 10.6 (Ref Range 8.8 - 10.5)
    Magnesium = 2.2 (Ref Range 1.7 - 2.4)

    My battle with staying hydrated seems to be getting harder over these last several weeks. I am now drinking a full 16 oz throughout the night because I wake up several times thirsty. Then drink another 16 oz first thing in the morning.
     
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  10. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT
    That sounds like me going into adrenal crisis. The low aldosterone doesn't allow the water to go into cells so they are drying up. My nose got so dry inside it felt like a hard beak instead the normal moist spongy tissue.
    If it's pouring out of you as fast as you are drinking it in, it's probably because of the low aldosterone. Salt wasting is the term - not a normal state of affairs. Did they test for adrenal insufficiency in ER? Figuring out the cause of this is very important. Adrenal insufficiency is considered unusual and you may have to prompt them to look for this. Hard to do when you're barely able to think/function, so while you can you may want to write questions about adrenal insufficiency noting the salt wasting into your record while you can.

    Are you getting pain in the instep of your foot?

    The licorice is what helped me reverse that scenario... from low aldosterone.... the fluid went back into my cells and I became rehydrated. Without it things just kept getting worse and worse. You are definitely in a serious danger zone. Unfortunately however, the licorice will skew test results so you might want to go the steroid route temporarily to stabilize if test results so indicate. However life on steroids is very bad news with serious damage to the body in many ways.

    Endocrinologists don't rehab adrenals, they just wait until they fail and put you on steroids...for life... because the long half life of many of the steroid synthetics interferes with the negative HPA axis feedback loop, the steroids eventually cause adrenal atrophy - failure of adrenals to function. You need adrenals to function in order to live, thus the lifelong requirement of steroids. Hydrocortisone is the more natural form but many find it difficult to tolerate and they would also add a mineralocorticoid for the aldosterone failure.

    However, there is good news, Dr. Lam who has familiarity with adrenal dysfunction, has written books aimed at rehabilitating adrenals. You may be very interested in this one which I found of great help, which you and your doctor may need:

    (Note that after each suggestion he states that one may have paradoxical response to just about anything and that may indicate a need for a lower amount to none in regard to supplementation.)
    Adrenal Fatigue Syndrome: Reclaim your Energy and Vitality with Clinically Proven Natural Programs (Dr. Lam's Adrenal Recovery Series)
    Aug 11, 2015 by Michael Lam and Dorine Lam
    https://smile.amazon.com/s/ref=nb_sb_noss_2?url=search-alias=aps&field-keywords=dr lam adrenal book

    Dr. Lam has a free website that you do not need to register to view with a lot of information:
    https://www.drlam.com/blog/frequent-urination-and-symptoms-of-adrenal-fatigue/20130/

    Hopefully you are not drinking anything that is a diuretic like coffee or tea...especially since these contain caffeine which will push your adrenals past capacity and result in serious disaster. Avoid all stimulants.

    Finding out the cause is important. Do you perhaps have a growth on the adrenal, or another issue?
     
    Last edited: Nov 23, 2017
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  11. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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  12. Gondwanaland

    Gondwanaland Senior Member

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    Excessive vit D?
     
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  13. JasonUT

    JasonUT Senior Member

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    Yes, this has been very bad lately. I can actually feel it happening as I become dehydrated.

    No, but I wish I would have asked. I also wish I would have asked for Ammonia. I'll touch on this at the bottom of the post.

    Yes, what does this mean?

    What form, dosage, etc? How long did it take before you started noticing improvements?

    ER doc suggested I request a full body PET scan from my PCP.

    To add a little more to this adventure... I was preparing for SIBO test with meat only 12 hour diet. I went to the ER 5 hours after my last meat meal as I started my 12 hour fast. Apparently, high protein diet can cause elevated BUN due to elevated ammonia processing.

    I discussed my BUN/Creatinine observations in post #13 and #14.
     
    Last edited: Nov 27, 2017
  14. JasonUT

    JasonUT Senior Member

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    I supplement with a total of 2300 mg of Vitamin C divided into 4 doses.
     
  15. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT Note that I am not a doctor, and I merely speak from my experience and research.
    With your low aldosterone, I'm concerned about the rare kind of dangerous electrolyte imbalance. Potassium monitoring is very important in this situation. Unfortunately there are no medically approved home potassium monitors that I know of. Some people do try to monitor potassium in saliva with unapproved monitors to keep from inhabiting the ER.

    WARNING: Use of the mass marketed electrolyte drinks like Gatorade which all contain potassium, that could cause hyperkalemia in someone who cannot excrete excess potassium ...as in those without aldosterone. You may want to check out the food lists on line to see what foods are high in potassium. As you crave salt you may be tempted to eat potato chips but potatoes have lots of potassium, so it's a bad idea.

    "The adrenal glands produce many more hormones than just glucocorticoids. One very important hormone is aldosterone, a mineralocorticoid. Aldosterone regulates fluid and electrolytes (sodium, chloride, potassium and magnesium) in the blood, between and in the cells of the body. As adrenal fatigue progresses, the production of aldosterone lessens. This causes "salt-wasting". As the salt is excreted by the kidneys, water follows leading to electrolyte imbalance and dehydration. Those with adrenal fatigue should always add salt (preferably sea salt with its trace minerals) to their water. Soft drinks and electrolyte drinks like Gatorade are high in potassium and low in sodium, the opposite of what someone with low cortisol needs. Commercial electrolyte drinks are designed for those who produce high cortisol when exercising, not for someone who produces little or no extra cortisol during exercise. You need to add ¼ to 1 teaspoon of salt to a glass of water or eat something salty to maintain fluid/electrolyte balance."

    Use of licorice in normal people can eventually result in serious problems, like those cause by hyperaldosterone. So when using licorice one is still constantly concerned potassium levels and whether one's adrenals are returning to normal function although that is usually a very slow process.

    I mentioned the foot arch instep pain because I had it when my aldosterone was low and I was going into adrenal crisis. My neighbor friend who was eventually diagnosed with Addison's disease, where the adrenals have virtually ceased to function, also had this symptom. His wife, a nurse, somehow traced this foot pain to low adrenal function and ended up thereby saving his life.

    There are of course a number of things which can cause HPA dysfunction including:
    "Disturbance of the HPA hypo-thalamic-pituitary axis is common from many prescription and street drugs which have psycho active properties. Examples are MDMA, Ecstasy-type street drugs, Narcotics, Benzodiazepines, Alcohol , etc. HPA disturbance may continue many years after the causative drug has been discontinued. These patients are commonly given psychiatric drugs which do not address the underlying problem. Rather than treat with psychoactive drugs, these patients should need supportive treatment to allow the endocrine system and HPA to return to normal functioning."
    From: http://jeffreydachmd.com/2014/04/b12-deficiency-neuro-psychiatric-disorders-jeffrey-dach-md/

    Many drugs, whether legal or not, cause problems with mitochondria which can result in low adrenal function as well: https://emediahealth.com/2011/04/10...algia-and-myalgic-encephalomyelitis-patients/

    Endocrinologists test adrenals with the ACTH stimulation test. This places a demand on the adrenals and the results measure their response. You can "pass" this test and still have majorly malfunctioning adrenals. It is basically a test as to whether they have ceased function. Since the end result of this standard protocol is that one is placed on steroids for life (which could cause adrenal atrophy and failure just by their use), one realizes that help must be sought elsewhere. Endocrinologists have no training in how to restore adrenals to health and are not trained in nutrition. Endocrinologists have the most training in things like protocols for diabetes.

    That is why I recommend you check out Dr. Lam's book. Dr. Lam has gone beyond basic training. He discusses a number of nutrients and herbs which may benefit adrenals. It is important to check this out because many adrenal formulas and adrenal remedy lists contain adrenal stimulants which can be detrimental to adrenals when in poor shape.

    A body scan may help to reveal some physiological abnormalities... which may or may not be able to resolve on their own. It's not something used to discover mitochondrial problems that are intracellular.

    In my recovery I also used adrenal glandulars...but ONLY those which were processed to remove hormones. Those which contain hormones can be horribly stimulatory and very detrimental. Glandulars are used only when one is in a very severe state of low adrenal function.
    The ones I took were formulated by Dr. Wilson:
    http://adrenalfatigue.org/dr-wilsons-protocols/
    Note that use of glandulars cannot be withdrawn without slow tapering and that quitting cold turkey in some instances could end up being fatal.

    With regard to the licorice, the response I had was pretty immediate. I took capsule forms which are available in many supplement stores. There is also licorice tea. However, you may want to get more testing done beforehand if possible since licorice will make test results inconclusive. Still from my experience, you sound to be in a critical situation, and if I were you I would order some licorice to have on hand. Hopefully you live with people who can help monitor your situation. Look up adrenal insufficiency. You will find Addison's forums and you will find youtube videos where you will see someone non-responsive in a coma like state who is dying from adrenal crisis. Note that impending signs often include vomiting and nausea. Study the signs listed and check out the symptoms of low aldosterone.

    If it is a matter of mitochondrial problems...the adrenals might not themselves be the issue, but rehabbing the mitochondria could be of essence.
     
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  16. JasonUT

    JasonUT Senior Member

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    @Chocolove

    Very complicated.

    I am currently adding 1/8 tsp of Himalayan Salt and 1/4 serving Ultima Electrolyte powder per 16 oz of water.

    My ER labs showed Potassium in the low end of the range while sodium was right in the middle.

    BUN = 35 (Ref Range 5-20) This is the highest I have ever had.
    Creatinine = 1.2 (Ref Range 0.6 - 1.3)
    MPV = 10.7 (Ref Range 6.8 - 10)
    Sodium = 139 (Ref Range 135 - 143)
    Potassium = 3.8 (Ref Range 3.5 - 5.1)

    Chloride = 101 (Ref Range 98 - 110)
    Calcium = 10.6 (Ref Range 8.8 - 10.5)
    Magnesium = 2.2 (Ref Range 1.7 - 2.4)

    I do have both Licorce Tea and Licorice Root on-hand.

    I read Dr. James L Wilson's book "Adrenal Fatigue : The 21St-Century Stress Syndrome" a couple years ago. Maybe I need to read it again.

    I have an ACTH stimulation test scheduled for Dec 8.
     
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  17. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT Yes. Complicated. I suggest you keep a time journal of your reactions to compare with your intakes.
    They suggest avoiding licorice consumption in the 2 weeks prior to testing. Your sodium and potassium levels look good but in that one test but keep an eye on them as over time they may become out of balance. You are already supplementing with a lot of sodium to try to keep things normal - which should be pointed out to the Doctor who may not realize that this abnormal overload of salted/water is what is helping to keep things in balance. You can point out that the ER had to use saline to stabilize your electrolyte imbalance.

    Check out these references regarding low aldosterone:
    https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_Diabetes_Guide/547067/all/Hypoaldosteronism

    Hypoaldosteronism
    Syndrome Associated with Hormone Deficiency Diabetes insipidus.
    Production of large volumes of isotonic (or even hypotonic) urine.
    ↓ NaCl retention (hyponatremia)
    ↓ H2O retention (hypovolemia; – decreased blood volume; circulatory shock)
    ↑ K+ retention (hyperkalemia and depolarization; speeding up)

    Hypoaldosteronism: A deficiency in aldosterone is fatal because you don’t retain salt or water and don’t excrete potassium which leads to hyponatremia, hypovalemia and hyperkalemia which leads to depolarization of all the cells in the body, which causes increased activity of your muscle cells and what kills you is eventually the fibrillation of the heart. By retaining less volume and salt, your blood volume drops and your blood pressure drops and this is circulatory shock. From: http://antranik.org/the-renin-angiotensin-aldosterone-reflex/ This article has a nice graphic on the RAA pathway which produces aldosterone.

    Avoid fasting with low adrenal function:
    The risk for hypoglycemia during Ramadan fasting in patients with ...
    www.nutritionjrnl.com/article/S0899-9007(17)30163-6/fulltext
    by M Chihaoui - ‎2018
    Aug 2, 2017 - Results from the present study showed that glucose levels were lower during fasting in patients with adrenal insufficiency.

    High protein low carb diets can cause problems even in normal folks. See:
    https://www.livestrong.com/article/538839-high-protein-diet-headaches/
     
  18. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @JasonUT Any chance you have certain diseases associated with adrenal insufficiency?
    https://www.hindawi.com/journals/ije/2014/876037/
     
  19. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    https://www.nature.com/articles/modpathol200898
     
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