Chronic health problem (Dehydration) - Faint hope somebody here might have some ideas

[Callmestar]

Your T3 is low and your TSH is high, which looks like hypothyroidism to me. Hypothyroidism causes you to urinate too much and not lose water via sweating/evaporation. In addition, you may have a thiamine deficiency which causes similar symptoms because each of these block oxidative metabolism.

You could test yourself to see if you respond favorably to some thiamine. I did this with thiamine hcl: I recorded my temperature (98 degrees), took about 250-300mgs of thiamine hcl, waited less than an hour and experienced all of my pain disappearing and my temperature went up a full degree (to 99 degrees). The response was so remarkable that there was no doubt that my thiamine was being blocked or was extremely low.

Thanks. Is there anything I can do to treat this if it is hypothyroidism? It may well be something to do with the Thyroid but from a medical doctors standpoint, those numbers are in the normal range so there's no treatment offered.

I started taking thiamine about 2 months ago when I had those blood results. Currently taking 200mg I day. I've not noticed any difference in symptoms, unfortunately.

Looking at your labs definitely shows something is wrong. Some kind of major stress on the body. I think trying to lower the stress on your body would be helpful.

Your vitamin D is low. And I would guess you are low on B vitamins. Do you get enough light? Is your home dark? That can be a stress. Also eating only twice a day huge amounts may not be the best. I would try eating every few hours and only drinking fluids like milk and juice and coke. Do you drink coke? I find it surprisingly uplifting for me energy wise.
Do you have a lot of mental or internal stress?

I suppose in general we don't get a lot of light here in the UK in the winter months and yes I'm usually indoors during the day. I do intentionally try and get out in out where possible when it's sunny. I have been supplementing with Vit d and continue do so some its a wonder why it's borderline low.

No I don't drink coke. Very rarely anyway. Is that a thing here? Drinking coke? Happy to try anything at this point.

I did used to have lots of problems with anxiety. Mentally I'm generally laid back and calm nowadays other than the stress around how unwell and drained and dehydrated I feel.

Hi,

I've had the same issue since 2015, including the urine being constantly clear regarding how much water I drank. Constant thirst and dry mouth.
In my case at least, I suspect it was because of high lactic acid due to chronic Lyme or b1 deficiency (both cause increased lactic acid). Even now, the way to go is drinking 4-6 liters of water per day. (My symptoms are cleared by simple I.V. with saline solution for 1.5 hours - all of them, including the thirst, the urine colour, the fibromyalgia, neurological, etc. etc. I.V. saline solution is the gold standard in hospitals for people with lactic acidosis. Basically water removes this lactic acid.)

This is what I found to work for me - it's a long story but worth the read, considering the spectacular results and the fact that you can find a lot of information on allithiamine on this forum:

My 6 month experience with Allithiamine treatment
NB: Allithiamine without the rest of the B vitamins and calcium + magnesium didn't do much for me and couldn't get my dose up without increasing the dosage of the other vitamins. If you're interested, I can write down how I upped my allithiamine intake until I could reach the 600 mg dose, the one with astonishing results.

Started in Mid-October 2020
Initial dosage 50 mg, quickly (2 weeks) ramped up to 150 mg/day
Stayed on 150 mg/day for a month.

Mid- November:Ran out of Allithiamine for 2 weeks during which I was bedridden again.

December: Ramped up the dose again to 300 mg per day in the first two weeks of the month.

January: Ramped up the dose to 600 mg per day and noticed a 80% reduction in all my symptoms.

February: Added sugar/glucose back into my diet + natural progesterone and noticed an almost complete remission of all symptoms (95%).



My state before allithiamine, since end of May 2018, after I did 4 months of intermittent fasting:

100%, 24/7 ---Light intolerant. Hypertonic muscles, all over. Migraine-like headache 24/7. Depersonalisation. Derealisation. Wounds that just wouldn't heal. Cognitive impairment (attention, memory, organisational skills etc.) Histamine intolerance. Sugar, dairy, gluten intolerance. Inability to take b vitamins (neuerological issues especially from b6). Muscle weakness (quadriceps). Inability to climb stairs. Severe POTS after light physical activity. Heart symptoms after climbing up the stairs. Extremely dry skin, especially on the soles of my feet (craked sking, 2 mm cracks; a thick, 0.5 cm layer of dead skin peeling off every time I took a shower). Skin dryness all over for 1-2 weeks after a showe. Gastroparesis since May 2020, SIBO, vagus nerve issues, occipital neuralgia/Arnold neuralgia prolonged attacks. Severe endometriosis pain and symptoms (this one since my first period). Untreatable insomnia (waking up at 3 am).
Three stroke-like episodes in July-September 2018.

Lived in bed, in darkness, with a sleep mask, just to avoid a worsening of my condition and end up in hospital.


Improvements while taking allithiamine, dose-dependent:

300 mg/day -- all of the above improved by 80%. I could spend 5-6 hours per day out of the bed, doing things around the house and
Some disappeared altogether: depersonalisation and derealisation; sensibility to B vitamins; wounds started healing themselves; all symptoms related to dryness of skin.

At 600 mg/day + added sugar (cakes, etc) in my diet, 95% improvement of all of the above symptoms.
The connection to sugar/glucose showed up because my birthday was at the beginning of February and my husband bought a commercial cake for me. Instead of dealing with a terrible relapse, I just felt SO much better. I could handle a 1-hour discussion of highly abstract and philosophical topic with my husband, with no relapse,

Stage 4 Endometriosis that has been going on for 20 years (since my 3rd period) disappeared completely, and this was totally unexpected (a large number of women/females in the Lyme/CFS community mention an increase in symptoms during/around their period; during my periods I walked like an old woman, half bent, very small steps). From heavy bleeding, filled with tissue and cysts fragments, that lasted 6-7 days every month (always), I have 3-4 days of light bleeding, no cramps, just a level 3 pain.

I told my husband that if this continues, I would recover completely in less than a year. The last 6 months did for me what none of the treatments for Lyme disease ever did.

Then I went out on 21st of february, walked 800 m in a day and all of my symptoms, the ones I started experiencing since I was 20 years old, came back. I also carried a heavy box (20 kg) up the stairs (2 flights of stairs), and I relapsed. I'm bedridden again. But my horrible period didn't come back, at least.
I'm slowly recovering now. It takes time. Key to my recovery has been the refusal to do any physical activity other than cooking. This points out to a genetic form of myopathy (intolerance to exercise). Genetic myopathies can vary wildly in their manifestations, even among siblings.

This 6 month experience was possible because I saw that none of the treatments that worked at least a little bit for other people diagnosed with Lyme disease, didn't work for me. At all. So I started looking elsewhere and didn't cling to my paper stating that my IgM in ELISA and WB were positive, 3 months in a row in 2017.
I just thought that it's extremely unlikely to have extreme neurological symptoms (stroke like episodes), and intravenous ceftriaxone, mynocicline, Buhner's herbs (antibiotics and herbs that support the body and reduce inflammation) and essential oils to just not work. I had studied every scientific paper detailing how Borrelia burrows itself in the body, how the inflammatory mechanisms work, etc. and everything COULD potentially explain my 300+ symptoms in the last 13 years. But at the same time, the reality of my ineffective treatment also was very much present.
ALL cases of people with such severe neurological symptoms that were treated with intravenous antibiotics, no matter how long they had had their symptoms, showed an improvement, smaller or greater, but it was there. In my case it has never been there.

I discovered that B1 deficiency can cause the same symptoms (300+ symptoms) as chronic Lyme disease and it can also be the substrate for the development of chronic symptoms that never really go away, the reason why the infection never really clears up.

I discovered that, just like the test for boreliosis, the blood test for vitamin b1 deficiency is not reliable. I discovered that the first disease known to cause an enormous amount of symptoms (at least known in the last 2 centuries) is beriberi disease, also called "the disease with 100 faces".

Very interesting. IV saline does the opposite for me, it creates more feelings of dehydration and more insipid urine. I've been taking Thiamine but not tried Allithiamine. Do you think there's a lot of difference between them?

I have not read this myself but it has been endorsed here. Kate Deerings book.
Amazon product ASIN 1511585625
I assume it has a blueprint and recipes etc.

The basics from me are:

1- eat small easy to digest mini meals 5-6x a day.
2- you want to keep your bs steady which keeps stress hormones down and will allow your adrenals to quite and your thyroid to recharge (for lack of a better word)
3- macros at each meal of roughly 40/30/30. C/f/p
4- try to get that protein up. Helps your liver and rebuild
5- easy to digest is quite individual. I would personally recommend tubers, white rice, sourdough bread, eggs, cheese, tropical fruit, beef, coke, ice cream, stews, white fish , shrimp blah blah blah
6- easy on the liquids. Soild over liquid nutrition.
7- dont drink water; eat cantaloupe etc
8- halt your supplements for a season. Multiple reasons why- but im out of time.
gotta run

your body is amazing snd smarter than we are. Its looking to heal. Nourish it and yourself well. Our grandparents didn’t call it a “healthy appetite “ for nothing- but weve lost that simple wisdom....

best to you

Appreciate the guidance and I'll be ordering the book!

 

[mostlylurking]

Thanks. Is there anything I can do to treat this if it is hypothyroidism? It may well be something to do with the Thyroid but from a medical doctors standpoint, those numbers are in the normal range so there's no treatment offered.

Hypothyroidism can be tricky to treat without a good endocrinologist. There's information on this forum and also on Danny Roddy's blog here: https://www.patreon.com/posts/14839477

I started taking thiamine about 2 months ago when I had those blood results. Currently taking 200mg I day. I've not noticed any difference in symptoms, unfortunately.

I got into serious trouble when my thiamine function got blocked via antibiotics last summer. Here's an article: Bactrim: An Anti-Folate, Anti-Thiamine, Potassium Altering Drug - Hormones Matter a LOT of pharmaceutical drugs block thiamine. I didn't really notice strong sustained improvement until I worked my way up to taking 2 grams of thiamine hcl/day. After two days at this dose I realized my gut was working again. Here is a good article on thiamine: Mega-Dose Thiamine: Beyond Addressing “Deficiency” Although Elliot Overton prefers recommending TTFD thiamine I stuck with thiamine hcl (larger doses needed) because TTFD gave me a headache.

I suppose in general we don't get a lot of light here in the UK in the winter months and yes I'm usually indoors during the day. I do intentionally try and get out in out where possible when it's sunny. I have been supplementing with Vit d and continue do so some its a wonder why it's borderline low.

It's important to supplement with enough D3, which is 10,000iu./day. I spent many years supplementing with 4,000iu/day and could not get my D level up over 30. Switching to taking 10,000iu/day did the trick.

 

[Belsazar]

It's important to supplement with enough D3, which is 10,000iu./day. I spent many years supplementing with 4,000iu/day and could not get my D level up over 30. Switching to taking 10,000iu/day did the trick

What levels are you aiming for (include reference if possible). I thought 40-50ng/ml are ok, so 38ng/ml would not be that low. Do you lower your dose if you get enough sunlight? Did you notice any improvements after adjusting your levels? Anyway, recommending a certain dose is difficult since we all react different to some degree.

Just Calcium is at the top of the range, I would be curious how PTH and PRL look like. Calcium Paradoxon. Isn't higher calcium associated with dry mouth?

 

[mostlylurking]

What levels are you aiming for (include reference if possible). I thought 40-50ng/ml are ok, so 38ng/ml would not be that low. Do you lower your dose if you get enough sunlight? Did you notice any improvements after adjusting your levels? Anyway, recommending a certain dose is difficult since we all react different to some degree.

Just Calcium is at the higher range, I would be curious how PTH and PRL look like. Calcium Paradoxon. Isn't higher calcium associated with dry mouth?

It is impossible to get the D level you need to protect you from the Covid virus by relying on the sun; you need to supplement. Ray Peat recommended 10,000iu/day and so did Dr. Lee Merrit in this video: I think 40-50's are OK; but my D level was stuck in the low 30's; Ray advised me to take 10,000iu to get it up higher so now I'm taking that higher dose.

After adjusting my levels, I'm sleeping better, but I'm also supplementing 2 grams of thiamine hcl /day which also improves sleep. And I take vitamin A transdermally which helps with sleep. D alone without A can cause insomnia. I just assume I don't get enough sun.

 

[mostlylurking]

double post, deleted

 

[Belsazar]

It is impossible to get the D level you need to protect you from the Covid virus by relying on the sun; you need to supplement. Ray Peat recommended 10,000iu/day and so did Dr. Lee Merrit in this video: think 40-50's are OK; but my D level was stuck in the low 30's; Ray advised me to take 10,000iu to get it up higher so now I'm taking that higher dose.

After adjusting my levels, I'm sleeping better, but I'm also supplementing 2 grams of thiamine hcl /day which also improves sleep. And I take vitamin A transdermally which helps with sleep. D alone without A can cause insomnia. I just assume I don't get enough sun.

Maybe you hit a steady-state. There are calculators, which are considering the depletion rate as well (for example Vitamin D Substituierung). On average, (according to such calculators) after getting the levels up. around 4000IU should keep the levels at around 50ng/ml. Would be interesting to know what influences the depletion rate, might be the reason why some need to supplement more than others. Anyway, measuring Vitamin D levels before and after supplementation would be advisable .

 

[Callmestar]

So, I'm cutting out all grains and starchy carbs. Today's food consisted of Breakfast: omelete with veg - red pepper & onion. Lunch: Corned beef and a couple of apples. Dinner: Pork with green leaf salad, with a little apple cider vinegar. A couple of cups of orange juice here and there.

I'd like to drink milk but I think I also have a slight intolerance to dairy. Not sure there's anything I can do about these but limits the food I can have when I'm avoiding gluten and dairy. Any other drink recommendations? I am so thirsty and dehydrated but I don't think drinking litres and litres of fruit juice would be wise and water just dehydrates me further.

I will see how I go with the dietary changes. I'm wondering if there's anything more specific I can do aimed at the thyroid in the meantime?

 

[2Li]

Hello, I've also had this exact same problem. What most people don't realise is that cortisol is not the only stress hormone that can cause issues. Osteocalcin is also involved in the stress response and is vitamin k2 dependent. Vitamins k2, E, and A all compete for uptake and can also affect vitamin D. An increase in anyone of these can cause an induced insufficiently in the other. Unfortunately you can't test K2 levels. But your test results are very similar to mine. Vitamin A is a limiting factor for thyroid receptor expression, and as such an insufficiently can mimic hypothyroidism except you have normal to high T4 levels. Another point about this stress pathway is that it seems to coincide with increased sulfur levels in the body. Sulfites destroy thiamine on contact (my B1 blood levels are well above normal range due to compensation)- antidote to sulfur is benfotiamine or allithiamine as these are hydrophobic easily absorbed and more sulfur stable.

 

[Vileplume]

So, I'm cutting out all grains and starchy carbs. Today's food consisted of Breakfast: omelete with veg - red pepper & onion. Lunch: Corned beef and a couple of apples. Dinner: Pork with green leaf salad, with a little apple cider vinegar. A couple of cups of orange juice here and there.

I'd like to drink milk but I think I also have a slight intolerance to dairy. Not sure there's anything I can do about these but limits the food I can have when I'm avoiding gluten and dairy. Any other drink recommendations? I am so thirsty and dehydrated but I don't think drinking litres and litres of fruit juice would be wise and water just dehydrates me further.

I will see how I go with the dietary changes. I'm wondering if there's anything more specific I can do aimed at the thyroid in the meantime?

Have you tried goat milk? Or A2 milk? So far I’ve been consuming that, for months, and it causes me no problems at all. Also, if you’re in the US, Costco sells some great manchego (sheep) and pecorino Romano (sheep) cheeses. Even if not Costco, I bet you can find PR at a grocery store. Just a few slices can give you a solid amount of calcium, usually well tolerated by digestion.

With the liters of juice thing, I hear you. Our problems sound different in many ways, but I’ve had an ongoing battle with frequent urination. I take TINY sips throughout the day, every ten minutes or so, just keeping OJ in a thermos. It makes me pee a lot less this way.

As for targeting the thyroid, I would dare say supplementing thyroid might help! this will also probably help with excessive urination.

 

[mostlylurking]

So, I'm cutting out all grains and starchy carbs. Today's food consisted of Breakfast: omelete with veg - red pepper & onion. Lunch: Corned beef and a couple of apples. Dinner: Pork with green leaf salad, with a little apple cider vinegar. A couple of cups of orange juice here and there.

What, exactly, are you trying to achieve with these choices? Although it sounds delicious, these choices would rip my gut six ways for Sunday. Corned beef is notoriously high in sodium nitrate. The red pepper, onion, apples, and leaf salad would be much loved by your gut bacteria and encourage them to party it up but they aren't going to do a whole lot positive for you, although well cooked apple is OK. Pork is high PUFA because it is not a ruminate animal. If you were doing well, I'd think wow this guy has a cast iron digestive tract. But you are here asking for help and advice so I wonder how much these food choices have to do with it.

Here's some reading: Vegetables, etc.Who Defines Food?

I'd like to drink milk but I think I also have a slight intolerance to dairy. Not sure there's anything I can do about these but limits the food I can have when I'm avoiding gluten and dairy. Any other drink recommendations? I am so thirsty and dehydrated but I don't think drinking litres and litres of fruit juice would be wise and water just dehydrates me further.

If you can eat dairy you would be a whole lot better off. Well worth the effort to acclimate your gut to tolerate it if you have an intolerance issue. If you expose your gut to a little milk every day, you will start making the enzymes again to digest it. Calcium is really important; the calcium/phosphate ratio is important. Milk is your friend. Soft cheeses are very good.

I will see how I go with the dietary changes. I'm wondering if there's anything more specific I can do aimed at the thyroid in the meantime?

Read Ray Peat articles about thyroid: Programmable Search Engine

Learn about logging temperature and pulse: https://www.patreon.com/posts/14839477

 

[Callmestar]

What, exactly, are you trying to achieve with these choices? Although it sounds delicious, these choices would rip my gut six ways for Sunday. Corned beef is notoriously high in sodium nitrate. The red pepper, onion, apples, and leaf salad would be much loved by your gut bacteria and encourage them to party it up but they aren't going to do a whole lot positive for you, although well cooked apple is OK. Pork is high PUFA because it is not a ruminate animal. If you were doing well, I'd think wow this guy has a cast iron digestive tract. But you are here asking for help and advice so I wonder how much these food choices have to do with it.

Here's some reading: Vegetables, etc.Who Defines Food?

If you can eat dairy you would be a whole lot better off. Well worth the effort to acclimate your gut to tolerate it if you have an intolerance issue. If you expose your gut to a little milk every day, you will start making the enzymes again to digest it. Calcium is really important; the calcium/phosphate ratio is important. Milk is your friend. Soft cheeses are very good.

Read Ray Peat articles about thyroid: Programmable Search Engine

Learn about logging temperature and pulse: https://www.patreon.com/posts/14839477

The main thing to achieve initially was eliminating starchy carbs and grains, as recommended by many on this thread. My gut has no issues with these foods at all. My gut doesn't have an issue with many foods in terms of digestive symptoms but that's clearly no indicator they are doing me any good due to my health struggles posted here. I agree on the corned beef not being such a great idea but it was the first day of this diet and what I had available for lunch that wasn't starch/grain-based. Is the rest really so bad? Miles from Ray Peats ideas?
When I say I have intolerances to Gluten and dairy, it's all headache/brain fog type symptoms rather than gut symptoms.

I will get a thermometer and start checking temp. My heart rate, is very low. It's around 50 BPM when resting, but then again it always has been even when I was very fit and healthy, competing in athletics at a very high level. I'm certainly not suggesting it means I'm healthy but I don't think it's going to get up to the levels recommended here.

Thanks for the links, I will have a read.

 

[peateats1]

The main thing to achieve initially was eliminating starchy carbs and grains, as recommended by many on this thread. My gut has no issues with these foods at all. My gut doesn't have an issue with many foods in terms of digestive symptoms but that's clearly no indicator they are doing me any good due to my health struggles posted here. I agree on the corned beef not being such a great idea but it was the first day of this diet and what I had available for lunch that wasn't starch/grain-based. Is the rest really so bad? Miles from Ray Peats ideas?
When I say I have intolerances to Gluten and dairy, it's all headache/brain fog type symptoms rather than gut symptoms.

I will get a thermometer and start checking temp. My heart rate, is very low. It's around 50 BPM when resting, but then again it always has been even when I was very fit and healthy, competing in athletics at a very high level. I'm certainly not suggesting it means I'm healthy but I don't think it's going to get up to the levels recommended here.

Thanks for the links, I will have a read.

You say you have a slight intolerance to dairy, you get dry mouth and thirst, low energy, low heart rate etc. Maybe you have gut issues, something like bad bacteria overgrowth or leaky gut? Any endotoxin or lps seeping into the blood stream can cause a ton of bad symptoms and even cause or worsen thyroid issues. Ray says vitamin A and magnesium deficiency can lead to leaky gut. If you have a lot of gram negative bacteria, their endotoxin can cause leaky gut. Idk, something to look into maybe?

 

[amz]

Very interesting. IV saline does the opposite for me, it creates more feelings of dehydration and more insipid urine. I've been taking Thiamine but not tried Allithiamine. Do you think there's a lot of difference between them?

Hey Callmestar,

I remember being hospitalized in 2013 after a surgery for endometriosis and I was on saline + glucose for a day or two, until I could eat again. I felt thirsty and hungry all the time and they wouldn't let me eat (possibly didn't allow me water either, can't remember).
It definitely did not have the same effect as the I.V.s I had in 2016 (one with saline, one with magnesium).

Nevertheless, my symptoms in 2016 had already evolved to basically having a lactic acidosis/metabolic acidosis while in the hospital, in front of all the nurses and doctors, where I thought I would die in front of suspicious and indifferent faces around me (hyperventilating and lost control of eye muscles, classic symptoms).
And no one gave a damn, because I had been labeled a "psychosomatic" case. When I told them that I drink way too much water and pee too often, I was looked at with skepticism - not sure you heard of "psychogenic polydipsia". I believe that's what they thought. Nobody checked my lactate levels or bothered to do a muscle biopsy, despite my obvious muscle weakness.

First time I experienced increased thirst and water intake was in my third year of university studies. It happened after a 3-month period where I tried to do resistance training (jogging mainly) and a stressful year where I had to write 2 dissertations for 2 separate, full BA degrees. I didn't pay much attention to my symptoms then. I had been diagnosed with "fibromyalgia" by then. After a year spent doing nothing, I recovered from the crushing fatigue and resumed my studies.

The difference between allithiamine and any other form of b1 is the difference between paying for something that actually works and wasting my money on i.v. thiamine HCL, benfothiamine or sulbuthiamine.
I had experimented with high thiamine doses for my chronic migraine-like headache since 2018. I took about 1000 mg per day, combined with other b vitamins and minerals, for about a month. I could not tolerate B6 whatsoever at the time.

In 2017, I had vitamins IV therapy, 4 times a week, for 2-3 months, which included high doses of B1, B12 and other things. In theory, IV therapy is the best way to get nutrients. Didn't work, just the IVs made me feel better.

Allithiamine helps especially in cases where symptoms are not alleviated by other things. I read some of the cases Elliot Overton presents on his Facebook page and it clearly shows that it works where nothing else works. The working theory is that since it doesn't require a protein transporter to enter cells and is fat-soluble, so it reaches the brain easily.
I wonder if some people are genetically unable to assimilate much of the thiamine they ingest, due to partial defects on the protein transporter site. I also known that high doses of thiamine help people with partial genetic defects too, so there's a case for allithiamine outside the normal supplementation role.


On a different note, from my newest research in the medical literature the presentation of diseases with chronic fatigue and exercise/effort intolerance is gathered under the umbrella term "myopathy". The muscle involvement may not even be present for many years. (In my case, I experienced muscle weakness in arms in 2012/2013, for the first time). All myopathies generate an accumulation of lactic acid in the body and the symptoms are as varied as they can be, according to the origin of the myopathies (if I remember correctly what I read). This accumulation varies from mildly higher than normal levels up to dangerous levels where you hyperventilate and lose control of muscles.

Myopathies are grouped into the following categories:

1. Genetic - metabolic and mitochondrial
2. Inflammatory - associated with infections/chronic infections such as borreliosis
3. Toxic - caused by ingestion of toxic drugs such as anti-retrovirals for HIV
4. Endocrine - hypo/hyperthyroidism for example
5. Vitamin dependent: vitamin B1 and vitamin D are the ones I read about.

Since the principle according to which there's one causative agent for one disease has been dispelled, it's highly likely for people to have an endocrine dysfunction and B1 deficiency, both working together to diminish one's quality of life. Or any other combination from the above list.
So, if you have chronic lyme disease and B1 deficiency, where regular thiamine doesn't cut it for you, you will be among the statistics where "treatment for lyme disease isn't really successful".

A highly informative article about myopathies: Toxic Myopathies
In this article even Omeprazole is listed as a known cause.


EDIT: Just want to add this study, A Diagnostic Algorithm for Metabolic Myopathies.

A Diagnostic Algorithm for Metabolic Myopathies

Metabolic myopathies comprise a clinically and etiologically diverse group of disorders caused by defects in cellular energy metabolism, including the breakdown of carbohydrates and fatty acids to generate adenosine triphosphate, predominantly through ...

www.ncbi.nlm.nih.gov

I also read that your fasting caused an increase in your thirst after you did a water fast. People with metabolic myopathies should basically never fast if they want to stay healthy. I have been in such a crazy deep hole of symptoms since 2018 because I did intermittent fasting, which was ok as long as I didn't move much from my bed. My symptoms of stroke-like episodes appeared after I started to walk a bit more around the house.

This explains what happens: Diseases - Metabolic Myopathies - Medical Management | Muscular Dystrophy Association

Excerpts:
"Episodes of rhabdomyolysis usually occur when a person with a metabolic myopathy “overdoes it” (sometimes unknowingly). These episodes, often described as “severe muscle pain,” may occur during exercise or several hours afterward. In those with carbohydrate-processing disorders, rhabdomyolysis may be triggered by aerobic exercise (such as running or jumping) or isometric exercise (like pushing or pulling heavy objects, squatting or standing on tiptoes).

In people with CPT deficiency, rhabdomyolysis is usually brought on by prolonged, moderate exercise, especially if an affected person exercises without eating. In CPT deficiency, rhabdomyolysis also may be triggered by illness, cold, fasting, stress or menstruation."

"
Dietary changes
Some people with metabolic disorders have benefited from dietary changes. There’s evidence that those with carbohydrate-processing problems may be helped by a high-protein diet, while those with difficulty processing fats may do well on a diet high in carbohydrates and low in fat.

For a look at diet considerations in acid maltase deficiency (Pompe disease), carnitine palmityl transferace deficiency, and phosphorylase deficiency (McArdle disease), see What Not to Eat: Some consensus, much controversy about diet in three metabolic diseases."

I do very well on a high carbohydrate and low fat diet, now that thanks to allithiamine I can process carbs again - my most significant recovery with the allithiamine protocol has been the reintroduction of sugar/glucose/simple sugars, such as in cakes or other sweets.

I'm mentioning this because I ditched the carbs for the past 4 years, for various healthy reasons, but it just helped with my b1 deficiency.
It wasn't the way to go for me. Not everyone can do on a high protein diet or a high fat diet.
If I don't eat some sweet things every meal, combined with protein rich foods, I relapse terribly. One day, 2 weeks ago, I only ate meat, 3 meals in a row. The next day I was in a lot of suffering (migraine, muscle pain, confusion, depersonalization...)

 

[gaze]

.

 

[mostlylurking]

The main thing to achieve initially was eliminating starchy carbs and grains, as recommended by many on this thread. My gut has no issues with these foods at all. My gut doesn't have an issue with many foods in terms of digestive symptoms but that's clearly no indicator they are doing me any good due to my health struggles posted here. I agree on the corned beef not being such a great idea but it was the first day of this diet and what I had available for lunch that wasn't starch/grain-based. Is the rest really so bad? Miles from Ray Peats ideas?
When I say I have intolerances to Gluten and dairy, it's all headache/brain fog type symptoms rather than gut symptoms.

I will get a thermometer and start checking temp. My heart rate, is very low. It's around 50 BPM when resting, but then again it always has been even when I was very fit and healthy, competing in athletics at a very high level. I'm certainly not suggesting it means I'm healthy but I don't think it's going to get up to the levels recommended here.

Thanks for the links, I will have a read.

Sorry for the critique. You're just starting out on this journey. I think you may find the Who Defines Food article by Ray Peat helpful.

Your low pulse also points to hypothyroidism so I think that issue should probably be pretty high on your list to look into. My endocrinologist watched for improvement in my blood pressure to confirm my higher dose of thyroid supplement. When my blood pressure went up to a level I had never seen before, he was very pleased. Then again, a low pulse can simply mean a larger healthy heart.

Gut issues can simply mean a high level of endotoxin, which can cause headaches among other symptoms, like inflammation. You might want to read about endotoxin. Here is a search engine that searches Ray Peat's articles: PeatSearch: a Ray Peat-specific search engine - Toxinless Use the cell on the left.

Have you tried eliminating gluten and dairy for a while (maybe a month) and then reintroducing dairy? Can you eat cheese?

Stopping starches and going strong into a Ray Peat diet can exacerbate a thiamine deficiency if you have one because many starches are fortified with thiamine and other thiamine containing foods are discouraged because of other valid reasons (for example, pork). If you find that you are increasing sugar you may want to consider a thiamine supplement. Sugar, whether it's white or consumed via lots of fruit juice increases your need for thiamine.

About the thermometer: try to find an old fashioned mercury in glass one if you can; the new digital ones are unreliable.

 

[Callmestar]

Thanks for all the info. Trying to go through it all, as and when I have the energy. It's got to the point where I feel I don't even have the capacity to decide what I should try next. Another day of feeling utterly drained and depleted, clear urine every hour and non-stop dry mouth.

Impulsively bought some raw milk kefir and some local honey and had a load of both just now. Is this not going to end up sending my cholesterol higher than it already is?

I can't say I hold out much hope for any diet making a significant difference. I've tried such foods many times with no improvement of symptoms. I've been Paleo, Vegan, Keto, gluten and diary-free. I've previously gone hard down the road of raw milk, eggs, unpasturised butter, grass fed steak etc etc. Never seen any improvement in my symptoms.

I've tried tons of supplements, although admittedly maybe not consistently enough. I'm currently on a load of supps recommended by a functional medicine doctor based on my symptoms and the blood test I posted here. I'm giving them a chance, but so far after a couple of weeks, I see no improvement. The supps include Vit D, Omega 3s, a thyroid supplement, Gluco/blood sugar balancing supplement, Kidney supplement, Digestive enzymes and Betaine HCL to increase low stomach acid, NT factor Lipids powder. Along with a couple I bought myself such as Thiamine and Magnesium.

I've seen multiple endocrinologists who have not had any idea or solution as to what is going on or how it can be treated.

I have a separate issue with my throat where the cartilage does not appear to move normally when swallowing and there is a restriction/pressure/clicking in the throat upon swallowing. Again ENT's have been unable to work out whats going on. This has often caused so tenderness in the thyroid area so who knows if this is a contributing factor.

I feel utterly lost and hopeless and am unsure what to do despite all the different ideas shared here. For now I guess I stick with the Ray Peat type diet and take the supplements.

I'm holding down a job by the skin of my teeth, literally working from my laptop in bed most days. Fortunately, I have the excuse to work from home right now seeing as we are still in lockdown in the UK, however ridiculous that may be.

 

[Maljam]

How much salt do you consume?

 

[Callmestar]

How much salt do you consume?

It varies. I've tried adding tons of salt, makes no difference. I've tried little to no salt, no difference. Currently, I salt my breakfast that's about it. I've gone through periods of intentionally adding a lot, putting it in my drinks. Doesn't seem to help.

 

[Belsazar]

Hello, I've also had this exact same problem. What most people don't realise is that cortisol is not the only stress hormone that can cause issues. Osteocalcin is also involved in the stress response and is vitamin k2 dependent. Vitamins k2, E, and A all compete for uptake and can also affect vitamin D. An increase in anyone of these can cause an induced insufficiently in the other. Unfortunately you can't test K2 levels. But your test results are very similar to mine. Vitamin A is a limiting factor for thyroid receptor expression, and as such an insufficiently can mimic hypothyroidism except you have normal to high T4 levels. Another point about this stress pathway is that it seems to coincide with increased sulfur levels in the body. Sulfites destroy thiamine on contact (my B1 blood levels are well above normal range due to compensation)- antidote to sulfur is benfotiamine or allithiamine as these are hydrophobic easily absorbed and more sulfur stable.

So Vitamin K2 helped you?

It varies. I've tried adding tons of salt, makes no difference. I've tried little to no salt, no difference. Currently, I salt my breakfast that's about it. I've gone through periods of intentionally adding a lot, putting it in my drinks. Doesn't seem to help.

Don't overcomplicate things. Have you tracked an example day on chronometer to get a better feeling how your nutrition looks like? How do you react to upping your calories? Hows your fasting tolerance (in regards to glycogen stores/liver health)?

The supps include Vit D, Omega 3s, a thyroid supplement, Gluco/blood sugar balancing supplement, Kidney supplement, Digestive enzymes and Betaine HCL to increase low stomach acid, NT factor Lipids powder. Along with a couple I bought myself such as Thiamine and Magnesium.

You dont react well to thyroid? Generally, supplements alone cant do magic. If you try something it really needs to make sense imho.

 

[Vileplume]

Thanks for all the info. Trying to go through it all, as and when I have the energy. It's got to the point where I feel I don't even have the capacity to decide what I should try next. Another day of feeling utterly drained and depleted, clear urine every hour and non-stop dry mouth.

Impulsively bought some raw milk kefir and some local honey and had a load of both just now. Is this not going to end up sending my cholesterol higher than it already is?

I can't say I hold out much hope for any diet making a significant difference. I've tried such foods many times with no improvement of symptoms. I've been Paleo, Vegan, Keto, gluten and diary-free. I've previously gone hard down the road of raw milk, eggs, unpasturised butter, grass fed steak etc etc. Never seen any improvement in my symptoms.

I've tried tons of supplements, although admittedly maybe not consistently enough. I'm currently on a load of supps recommended by a functional medicine doctor based on my symptoms and the blood test I posted here. I'm giving them a chance, but so far after a couple of weeks, I see no improvement. The supps include Vit D, Omega 3s, a thyroid supplement, Gluco/blood sugar balancing supplement, Kidney supplement, Digestive enzymes and Betaine HCL to increase low stomach acid, NT factor Lipids powder. Along with a couple I bought myself such as Thiamine and Magnesium.

I've seen multiple endocrinologists who have not had any idea or solution as to what is going on or how it can be treated.

I have a separate issue with my throat where the cartilage does not appear to move normally when swallowing and there is a restriction/pressure/clicking in the throat upon swallowing. Again ENT's have been unable to work out whats going on. This has often caused so tenderness in the thyroid area so who knows if this is a contributing factor.

I feel utterly lost and hopeless and am unsure what to do despite all the different ideas shared here. For now I guess I stick with the Ray Peat type diet and take the supplements.

I'm holding down a job by the skin of my teeth, literally working from my laptop in bed most days. Fortunately, I have the excuse to work from home right now seeing as we are still in lockdown in the UK, however ridiculous that may be.

Don’t give up. Something will work. Sometimes it’s just a matter of the right things clicking in conjunction. I’ve tried a lot of diets too, and one thing I’m very confident in is Dr. Peat’s understanding of the body and our cells. You’re on the right track. Keep trying things. You’ll get it.