Vitamin B1 + Early Stage Kidney Disease

[kay_rae]

I would ask the lab what equation they are using. They should know. Even if the results are computed automatically, the diagnostics facility should be able to get that information for you.

Thanks Yerrag. I'll ask them when I go in.

What tests are you getting from the 24 hr urine collection? ACR? Uric Acid? Creatinine Clearance?

I believe all of them, but I will double check when I go in on Monday.

It would be helpful to get at least a few tests for inflammation. LDH and hsCRP at the very least.

Iron panel is needed, especially if you haven't had them done for a while.

I will see if they can add these, otherwise I will ask for them to be added to my September tests.

Your water intake is a lot, which is a popular thing to do in the US. I used to do that. I now drink when my body tells me to, when I'm thirsty. It's the elderly people who have poor bladder control who have to be reminded to drink more water, as they tend to limit water intake to keep themselves from having the urge to urinate so often. Other countries that are not so exposed to US medical beliefs don't drink that much, and people do just as well, or even better. Too much water drinking, at the very least, makes you urinate more, and when you have to wake up at night to urinate so often because of it, it becomes a negative on your health.

I feel like I was under drinking before, and even if I was thirsty, wouldn't be drinking water because I was "busy" or "distracted". I don't really drink unless I am thirsty, but have just been more aware of how much I am actually drinking. It typically ends up being around 3L per day. With being out in the Arizona heat a lot, I feel it is adequate amount of water for now, I don't feel comfortable doing less. It's not impacting my sleep in any way at this time, but will be aware that it doesn't.

There is no mention of improving on your nutrition. Allocation time to make sure you have no deficiency of macros, vitamins, and minerals would help cross out any possible deficiencies that impact your health and recovery. I have an infrared mat and infrared light, I may still use them in the future, but I think they're the final layer of my recovery. If the inner layers aren't being addressed, those won't have much of an impact. An example is red light therapy, supposed to improve on cytochrome oxidase availability, which impacts mitochondrial production of energy. Many people find them having no impact, and I think it's because many don't realize that good blood sugar regulation has to be established first. If the supply of sugar and absorption of sugar into tissues is not going so well, what does maximizing on cytochrome oxidase availabilty do when it would barely be used?

I did address this in my second bullet point and believe nutrition is a HUGE component of this journey with my kidneys and overall health.

Continue to evaluate and adjust diet based on suggestions in this thread and lab results in August

I just started using Cronometer to more accurately track which nutrients I am taking in. I think I need to just track for 2-3 weeks and then evaluate based on what I am seeing from the tracking and suggestions on this thread. Without tracking nutrients before I think it would be hard to know where I need to adjust quite yet. I'll certainly share what I am finding after a few weeks of tracking and make decisions at that time. Looking forward to sharing that information later on.

Speaking of blood sugar control, that is an important aspect of your recovery. In itself it's also a project. I hope you've read well the pdf file on insulin I sent. It won't agree with your doctor for sure. So it will be difficult to decide where to go. Your doctor will not be able to get you again to improve, neither will anyone here. We can throw some bones along your way, but you'll have to be your own doctor to overcome the challenges of Type 1 diabetes. If you have any questions, pm me.

This is actually the area I feel most confident in as of the last 5 years, especially the last year. I am in the best control of my life and will continue to work on this. I know the important it holds in so many things and after living for nearly 24 years with T1D know how much of a commitment it is. I have made the commitment and will continue to do so. I have endless tools, information and resources available to me and feel equipped to handle this piece confidently moving forward.

Thanks so much Yerrag for your commitment to information on this topic. I truly look forward to making some changes now, and in the future, and sharing my results along the way. Stay tuned!

 

[yerrag]

I feel like I was under drinking before, and even if I was thirsty, wouldn't be drinking water because I was "busy" or "distracted". I don't really drink unless I am thirsty, but have just been more aware of how much I am actually drinking. It typically ends up being around 3L per day. With being out in the Arizona heat a lot, I feel it is adequate amount of water for now, I don't feel comfortable doing less. It's not impacting my sleep in any way at this time, but will be aware that it doesn't.

The dry desert weather does require more water intake. I used to drink a lot of water unintentionally. I was taking supplements throughout the day, and taking them with water. So I ended up drinking a lot of water, 3 liters also.

I did address this in my second bullet point and believe nutrition is a HUGE component of this journey with my kidneys and overall health.

Sorry I missed that. Cronometer is a good way to go.

This is actually the area I feel most confident in as of the last 5 years, especially the last year. I am in the best control of my life and will continue to work on this. I know the important it holds in so many things and after living for nearly 24 years with T1D know how much of a commitment it is. I have made the commitment and will continue to do so. I have endless tools, information and resources available to me and feel equipped to handle this piece confidently moving forward.

Thanks so much Yerrag for your commitment to information on this topic. I truly look forward to making some changes now, and in the future, and sharing my results along the way. Stay tuned!

Blood sugar regulation is so important so I'm glad you're committed to improving it. Coming from being a type 1 diabetic, even more so to you.

I was hypoxemia (low oxygen) and hypoglycemic (which our doctors always underdiagnose- their focus is on hyperglycemia) and I was often having allergic rhinitis, sore throats, having fever and flu twice a year. Frustrating as when I work out and go to a higher level, getting sick sets me back each time it happens. I was a supplement addict, and all the supplementation did nothing.

Fixed my hypoxemia and my hypoglycemia. And are a well-rounded nutritional lifestyle. Even tried to do no exercise by just being active doing chores. It proved to me that with nutrition, forced exercise is not that important. It's to me a false way to compensate for poor nutrition. People don't get sick from little forced exercise (as Ray Peat does well with little forced exercise) but people get sick from poor nutrition. Not that forced exercise is bad, but people exercise a lot thinking it matters that much while they fail on nutrition.

I see people running marathons and never lose weight maybe even add weight.

Good luck in your quest. I share your hope in climbing this mountain and having a peak experience in this journey!

 

[kay_rae]

New Lab Results and seem some improvements already. Looking forward to continuing the Vitamin B1 and retesting in 6 weeks.

Lowest urine creatinine & albumin/creatinine ratio in over 10 years (dropping from 1033 ratio just a few months ago, and ranging from 700-1200 over the last decade). Still work to be done, but hoping to see the ratio continue to improve over the next 6 weeks and beyond.


CBC Panel: Based on HCT & HGB levels it looks like I may need to increase iron intake, and maybe folate as well? According to Cronometer I am getting plenty of B12, but the other two are not meeting the daily recommended amount. Thoughts on this?
Although this report shows my PLT out of range, further research shows the range is actually up to 450.0, which would put me in range.

 

[sweetpeat]

looks like I may need to increase iron intake

Probably a good idea to keep an eye on iron when taking high dose B1. My serum iron dropped when I took it.

 

[kay_rae]

Probably a good idea to keep an eye on iron when taking high dose B1. My serum iron dropped when I took it.

Good to know! Do you take iron supplements to counter balance it or increase iron intake in some way? My doctor just recommended either a pre-natal multi-vitamin with iron or iron supplement of some sort.

 

[sweetpeat]

Good to know! Do you take iron supplements to counter balance it or increase iron intake in some way? My doctor just recommended either a pre-natal multi-vitamin with iron or iron supplement of some sort.

I'm cautiously supplementing a bit of iron every other day or so. I have a tendency toward constipation so that's why I'm being cautious. I also either drink orange juice or take vitamin C when I eat red meat.

 

[yerrag]

Lowest urine creatinine & albumin/creatinine ratio in over 10 years (dropping from 1033 ratio just a few months ago, and ranging from 700-1200 over the last decade). Still work to be done, but hoping to see the ratio continue to improve over the next 6 weeks and beyond.

This is good news! So it seems the thiamine supplementation is working very well for you! Looking forward to the next tests.

CBC Panel: Based on HCT & HGB levels it looks like I may need to increase iron intake, and maybe folate as well? According to Cronometer I am getting plenty of B12, but the other two are not meeting the daily recommended amount. Thoughts on this?

It's still better to get confirmation with an iron panel test, as caution is needed when taking iron. The cause of low RBC (it passes range but I'm not counting it out, like I said you can't be mechanically following the numbers like your doctor would), Hgb, and Hct are many, and it's best to find out which it is. Is it low iron? Is it low b12/folate, or is it pernicious anemia? A capable doctor can help you with this.

Although this report shows my PLT out of range, further research shows the range is actually up to 450.0, which would put me in range.

What did the research say to allow the expanded range for PLT? Hmm, what does a high platelet count mean though?

I don't know what GR (edit: it means granulocytes) means, but it seems like to be referring to PMN (polymorphonuclear cells) which consist of neutrophils, eosinophils, and basophils.

But it's odd that this test result does not break them down, as usually they're broken down. As in the last CBC you gave me. Why are they giving less information? I wonder why. Is this the same lab you went to last time? Knowing neutrophils, eosinophils, and basophils info is very helpful. This is probably part of the dumbing down process of medicine. The less information given, the less people will analyse data themselves.

This is the same thing that's done with blood sugar tests and with kidney tests.

5 hr oral glucose tolerance testing (OGTT) has been replaced by HbA1c. OGTT is much more superior and gives a better indication of blood sugar health. HbA1c, accdg to Ray Peat, is affected very much by PUFA content in the blood, so it doesn't fully reflect blood sugar health.

Creatinine clearance based on 24hr urine collection, properly adjusted, gives a better indication of kidney health, but eGFR based on serum creatinine is being used when eGFR calculation is affected greatly by blood volume. If you're hypovolemic or hypervolemic, the value is off. And the fact that age is also used to determine eGFR makes the calculated result a nebulous figure - voodoo. A healthy adult can have his eGFR undercalculated, and a very sick teenager can have his eGFR overcalculated.

 

[Tarmander]

Awesome results with the B1. Interested to see the next test as well

If you do decide B12 is the problem, sometimes just having it in your food is not enough, even if you are getting a good dose of it.

I have talked to many people who had B12 problems, even eating lots of meat, and noticed a large difference when they added a sublingual B12.

 

[Recoen]

Awesome results with the B1. Interested to see the next test as well

If you do decide B12 is the problem, sometimes just having it in your food is not enough, even if you are getting a good dose of it.

I have talked to many people who had B12 problems, even eating lots of meat, and noticed a large difference when they added a sublingual B12.

Is there a sublingual you recommend? Adeno-, hydroxy-, or methylcobalamin?

 

[Tarmander]

Is there a sublingual you recommend? Adeno-, hydroxy-, or methylcobalamin?

I like hydroxy and then adeno personally because they work the best for my body but its probably best to experiment

Hydroxy is especially good for multiple chem sensitivities and other chronic conditions

 

[Recoen]

I like hydroxy and then adeno personally because they work the best for my body but its probably best to experiment

Hydroxy is especially good for multiple chem sensitivities and other chronic conditions

I do the best with adeno - most likely because I need TCA support.

 

[kay_rae]

It's still better to get confirmation with an iron panel test, as caution is needed when taking iron. The cause of low RBC (it passes range but I'm not counting it out, like I said you can't be mechanically following the numbers like your doctor would), Hgb, and Hct are many, and it's best to find out which it is. Is it low iron? Is it low b12/folate, or is it pernicious anemia? A capable doctor can help you with this.

Awesome results with the B1. Interested to see the next test as well

If you do decide B12 is the problem, sometimes just having it in your food is not enough, even if you are getting a good dose of it.

I have talked to many people who had B12 problems, even eating lots of meat, and noticed a large difference when they added a sublingual B12.

Have scheduled an iron panel test next week and will share the results when I get them. Will the iron panel be able to pin point what I need (iron, folate, B12, etc.), or are there additional tests that need to be done as well?

Is there a sublingual you recommend? Adeno-, hydroxy-, or methylcobalamin?

I like hydroxy and then adeno personally because they work the best for my body but its probably best to experiment

Hydroxy is especially good for multiple chem sensitivities and other chronic conditions

According to Cronometer, I am getting pretty much all of my B12 from my Emerald Daily Multi, and a very small percentage from food. I'm not familiar with these different types of sublinguals, but after a small amount of research I see that my multi is not sublingual. So the suggestion would be, if after receiving lab results that support the need for B12, to take a sublingual supplement, correct? Is it safe to take in addition to my multi and other supplements, or should I discontinue the multi to ensure I don't have too much intake? Any general risks or side effects I should watch for with these?

What did the research say to allow the expanded range for PLT? Hmm, what does a high platelet count mean though?

Just did a basic search of "PLT blood test result range" and every article I looked at said it was not considered elevated until it hit the 450+ range, and anything below was in a healthy range. Additional research showed "In general, a platelet count more than 450,000 cells per microliter is considered elevated; this is known as thrombocytosis. There are numerous causes of thrombocytosis and fortunately, the majority are benign and transient." Based on the article, it's most likely that an iron deficiency may be why my platelet count is toward the higher end. I found many articles that said the same thing, this is one of them: 8 Things That Elevate Your Platelet Count

I don't know what GR (edit: it means granulocytes) means, but it seems like to be referring to PMN (polymorphonuclear cells) which consist of neutrophils, eosinophils, and basophils.

But it's odd that this test result does not break them down, as usually they're broken down. As in the last CBC you gave me. Why are they giving less information? I wonder why. Is this the same lab you went to last time? Knowing neutrophils, eosinophils, and basophils info is very helpful. This is probably part of the dumbing down process of medicine. The less information given, the less people will analyse data themselves.

I can certainly ask for them to break these down on the next test, or maybe even call to see if they have that information but just didn't release it? My previous tests were completed by the same lab company, but a different health system/doctor put the order in - not sure if that has anything to do with it. My doctor was also confused as to why they didn't do the Ca/P test as I had requested. We'll continue to get that test on my next run of labs.

Creatinine clearance based on 24hr urine collection, properly adjusted, gives a better indication of kidney health, but eGFR based on serum creatinine is being used when eGFR calculation is affected greatly by blood volume. If you're hypovolemic or hypervolemic, the value is off. And the fact that age is also used to determine eGFR makes the calculated result a nebulous figure - voodoo. A healthy adult can have his eGFR undercalculated, and a very sick teenager can have his eGFR overcalculated.

I did get my 24 hour urine test back, but we are going to re-test next month as there are some things I wasn't aware of that may have impacted numbers (vigorous exercise, collection/storage procedure, food consumption, etc.). It was elevated, as expected, but we want to get a more accurate or confirming test. I will share both results when I get the second test done.

I also have researched the fermented foods like Kefir & cabbage (sauerkraut/kimchi) can be beneficial to kidney health. Any thoughts on using fermented foods?

Appreciate all the info everyone! Keep it coming and I will continue to share my journey.

 

[Andy316]

Hi Kay_Rae, did you get your iron panel results back? After reading your posts I suspect I maybe in the same boat as you. I did my iron panel couple of months back and it showed high ferritin but below range serum iron.

 

[kay_rae]

@yerrag @Tarmander @Recoen @S-VV @sweetpeat @Andy316
New test results:

Basic Metabolic Panel was done as well, but kidney numbers (eGFR, creatinine, BUN, etc.) showed no changes from previous test.

Based on the other tests, it does look like Iron itself is the problem? (Am I interpreting that correctly?) The other factors all seem in range (B12, folate, Vitamin D), so I should just take an iron supplement? Guidance on that appreciated.

 

[Recoen]

I used ancestral supplements spleen to get my hemoglobin back up. Mine was truly low though because I lost 1800mL of blood very quickly. Along with eating more red meat, liver, etc. Fe is a tricky one. It could be not enough vit A, Cu, B12, hypothyroid, etc. Do you crave red meat?

 

[Andy316]

Iron saturation and high ferritin can be corrected with copper supplementation.

 

[kay_rae]

I used ancestral supplements spleen to get my hemoglobin back up. Mine was truly low though because I lost 1800mL of blood very quickly. Along with eating more red meat, liver, etc. Fe is a tricky one. It could be not enough vit A, Cu, B12, hypothyroid, etc. Do you crave red meat?

Thanks Recoen. I do enjoy red meat, but have cut back greatly to support my kidneys. I eat some sort of red meat in small portions 1-3 times per week at most. Before the kidney issues arrived, I would eat red meat pretty much daily. I am afraid to add red meat back in as my kidneys are my priority.

I do have hypothyroidism that has been treated and relatively "controlled" for years. My numbers are all currently "in range" for thyroid.

According to my lab reports, it does look like I'm doing ok with B12. Is that what you interpret from it as well?

I try to limit Vitamin A as well when I can. I'm a supporter of the low Vitamin A diet and intrigued by the Vitamin A as a toxin debate. My kidney diet is my priority right now, so I do still get Vitamin A, but try to limit when I can.

Copper I'm not too sure of. According to my nutrition log with Cronometer, I get 99% of my daily value through my daily multi-vitamin, but also small amounts through food (white mushrooms, black beans, avocado, cabbage, etc.) Should I get copper tested on my next blood draw in September?

Iron saturation and high ferritin can be corrected with copper supplementation.

Newbie question, is high ferritin determined by my MCH & MCHC levels being low? Any recommendations on types/doses of copper supplements or things I need to watch for? Any risk in taking copper supplementation? (I'll do some research as well, but also appreciate other's experience.) This webpage also suggests taking Zinc along with the copper. Any thoughts or concerns about this?

The website also shares that "In rare cases, an overdose of copper may lead to kidney failure". This scares me a little with the current state of my kidneys. Is there a good chance that taking copper could cause further damage to my kidneys?

 

[Recoen]

Thanks Recoen. I do enjoy red meat, but have cut back greatly to support my kidneys. I eat some sort of red meat in small portions 1-3 times per week at most. Before the kidney issues arrived, I would eat red meat pretty much daily. I am afraid to add red meat back in as my kidneys are my priority.

I do have hypothyroidism that has been treated and relatively "controlled" for years. My numbers are all currently "in range" for thyroid.

According to my lab reports, it does look like I'm doing ok with B12. Is that what you interpret from it as well?

I try to limit Vitamin A as well when I can. I'm a supporter of the low Vitamin A diet and intrigued by the Vitamin A as a toxin debate. My kidney diet is my priority right now, so I do still get Vitamin A, but try to limit when I can.

Copper I'm not too sure of. According to my nutrition log with Cronometer, I get 99% of my daily value through my daily multi-vitamin, but also small amounts through food (white mushrooms, black beans, avocado, cabbage, etc.) Should I get copper tested on my next blood draw in September?



Newbie question, is high ferritin determined by my MCH & MCHC levels being low? Any recommendations on types/doses of copper supplements or things I need to watch for? Any risk in taking copper supplementation? (I'll do some research as well, but also appreciate other's experience.) This webpage also suggests taking Zinc along with the copper. Any thoughts or concerns about this?

The website also shares that "In rare cases, an overdose of copper may lead to kidney failure". This scares me a little with the current state of my kidneys. Is there a good chance that taking copper could cause further damage to my kidneys?

I think the vit A issue has a lot to do with glucuronidation. So supporting your liver is key.

Serum Bs seem to be more indicative of recent intake. I think the MMA level on an organic acids test is the best indicator for B12 status.

The thyroid obviously needs Fe but hypothyroid seems to cause the body to not uptake as much. So it turns into a downward spiral. FeS clusters are obviously crucial for the ETC too.

I would consider trying the ancestral supplements spleen as it’ll be a lower total amount of red meat added.

Cu is also a tricky one. Like other metals it’s needed but can be a problem if there’s too much. Or if you don’t have enough protein to carry it, etc.

There’s a big connection between B1, Fe, and Cu so I would definitely keep up with the B1.

 

[Tarmander]

Once you start getting into the weeds of supplementing individual minerals, things can go right or wrong very quickly.

I know some people manage it, but I have not talked to many who correct copper or iron through direct supplementation unless it is a straight deficiency which is rare. It is often something else, like B vitamins in Iron's case, that correct things.

Personally I would try a B complex a few times a week to see if that does anything to the blood tests. If it feels good, take more, if it feels bad, take less.

I like the spleen idea above too

 

[yerrag]

@kay_rae I'm glad you were able to confirm that you have problems with iron, as reflected by the low transferrin saturation of 12%, which is far below the optimal range of 30-40%.
(I've erased my earlier comments in this space. Your serum iron values are actually low, not high. So I had to edit).

I've not had the experience of correcting low-iron anemia so I couldn't suggest how to go about correcting your condition. I had hemachromatosis before and I donated blood, and that fixed it.

I just don't know if it would help to also get your serum ferritin levels though. Sometimes, serum iron levels are low because the body is storing it in ferritin, to keep the iron away from bacteria in the system.

But it may also be that in the diet you showed us, it didn't seem to have much red meat, and I don't know if you took any multi-vitamins that had its share of iron. So maybe you were already taking in too little iron to begin with? I suppose if you ate cereals and oatmeal and bread regularly, and all these were fortified with iron, you'd have some iron, maybe to the point of excess. Can you give an idea of your intake of iron-rich foods to give us an idea?

On a related topic, since you have continually been losing albumin thru urine excretion, it is safe to assume that your blood volume would be low. A test of blood volume would also be helpful, although I don't know what that entails. A friend of mine had one done before, but I wasn't able to get details from him. But for me, it's important to know your blood volume as knowing that would allow me to get a suitable factor to use to adjust the many blood markers I use to analyze your condition. I refer to blood markers that are based on concentration in a volume of blood, which most serum markers are. Most of the blood markers are inflated. What is deficient may appear normal. What is normal may appear to be in excess.

For example, a serum albumin of 42 appears normal. But it is based on say a normal blood volume of 5 liters. If we were to know that the value is taken from a person whose blood volume is 80% of normal (at 4 liters), we can adjust the value by a factor of 0.8, and the adjusted value would be 42 (0.8) = 33.6 . Then we can realize that the person serum albumin is below optimal range (40 - 50).