Low appetite, weight loss. Help appreciated

[thorn]

Hi everyone, I know I've posted here before, about similar subjects, but I'm currently pretty scared about how I am and I don't know who to turn to for help.

Since last year I've lost about ~20 KG of weight, and I'm fast approaching a point where I can't lose any more. But I have yet to be able to eat more than one meal a day, and I'm scared what's going to happen if I keep going like this. I live alone, so I have no one to remind me, or to help me. I have no family or friends in the area, either.

Part of it is that my appetite still isn't very good. But I feel like, moreso, it's hard for me to try to make a second meal. I know I need to, but food can still make me feel ill/nauseous. And even if it doesn't, my memories of getting sick at even the slightest food smell just a few months back is really making me not want to test and zed if it's gone, and then potentially waste perfectly good food.

I know I don't have to make anything fancy, but even just turning my oven on is a struggle. I'm scared to try to eat more, even though I know I need it.

Im sorry if this is a repeat of my last post. But I'm just scared, I can't sleep on my sides anymore without feeling my ribs. Its uncomfortable just to sit down because I'm so bony now. I just want to gain a little weight, but I don't know how. I know several times, thiamine deficiency has been brought up to me on here, but I don't know how to ask my doctor if I can take it. I have to order it specifically either way. Sorry for the long rant, I'm just scared of what's going to happen if I don't figure this out soon, or get some help. 

Thank you very much for reading. Apologies for the long post. 

- Thorn 

[knitty kitty]

5 hours ago, thorn said:

Hi everyone, I know I've posted here before, about similar subjects, but I'm currently pretty scared about how I am and I don't know who to turn to for help.

Since last year I've lost about ~20 KG of weight, and I'm fast approaching a point where I can't lose any more. But I have yet to be able to eat more than one meal a day, and I'm scared what's going to happen if I keep going like this. I live alone, so I have no one to remind me, or to help me. I have no family or friends in the area, either.

Part of it is that my appetite still isn't very good. But I feel like, moreso, it's hard for me to try to make a second meal. I know I need to, but food can still make me feel ill/nauseous. And even if it doesn't, my memories of getting sick at even the slightest food smell just a few months back is really making me not want to test and zed if it's gone, and then potentially waste perfectly good food.

I know I don't have to make anything fancy, but even just turning my oven on is a struggle. I'm scared to try to eat more, even though I know I need it.

Im sorry if this is a repeat of my last post. But I'm just scared, I can't sleep on my sides anymore without feeling my ribs. Its uncomfortable just to sit down because I'm so bony now. I just want to gain a little weight, but I don't know how. I know several times, thiamine deficiency has been brought up to me on here, but I don't know how to ask my doctor if I can take it. I have to order it specifically either way. Sorry for the long rant, I'm just scared of what's going to happen if I don't figure this out soon, or get some help. 

Thank you very much for reading. Apologies for the long post. 

- Thorn 

Ask your doctor to consider "Gastrointestinal Beriberi" as the correct diagnosis.  

Examples of cases....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6978589/

I lost sixty pounds in a month because of gastrointestinal beriberi caused by thiamine deficiency.  My doctors didn't have a clue.  My doctors kept asking if I drank alcohol.  I don't.  So the doctors shrugged their shoulders and walked away saying I was hypochondriac.  Doctors don't think of Thiamine deficiency outside of alcoholism.  Being a microbiologist, I knew about vitamins and minerals and cell biology.  I started supplementing with thiamine and have recovered from Wernicke's Encephalopathy.  

I wish you success on your journey.  

 

[ChessFox]

Thanks a lot Knitty Kitty for writing about thiamine deficiency. For the last three years, I have had nerves firing all throughout the body. They can feel like little mosquitos or bees buzzing right below the skin. It is all very random.

The other day, I ate some smoked salmon which has sulfites. Sulfites destroy thiamine. I noticed a 500% increase in all the nerves firing right after. In fact before eating the smoked salmon I was having a good health day.

I am going to begin taking a thiamine supplement today.

Do you think celiacs can recover fully from all the thiamine deficiency damage?

For example there is Wernicke-Korsakoff syndrome from thiamine deficiency. Korsakoff appears permanent where Wernicke is not. I guess I have this image of even the most damaged villi absorbing at least some small percentage of nutrients otherwise how am I still alive today. The body likely allocated this small percentage to the most critical bodily functions and everything else suffered in consequence. Over the last decades my symptoms have all gotten progressively worse. 

I am just hoping that everything is recoverable. But then again even after years of gluten-free the villi may never heal 100%. So maybe other things like peripheral neuropathy may never heal completely. It is probably best not to worry and just take the thiamine and find out. But it just seems like with every B vitamin deficiency like B12 deficiency there are chances of permanent damage and it is all just very challenging. Everytime that I feel like I have solved the puzzle there is some other piece missing. 

[knitty kitty]

Thank you, @ChessFox.

Much as I would like to say that all the damage from thiamine deficiency is reversible, I can't.  Thiamine deficiency symptoms often aren't recognised as such until the symptoms get severe and the risk of permanent damage is at its highest.  

In my case, I have acalculia (I can't do math) and my memory is fuzzy about events that occurred when I was most deficient.  

Please remember it is rare to have a deficiency in just one vitamin.  Malabsorption affects ALL the vitamins and minerals to varying degrees.  Thiamine is the vitamin that can become deficient the quickest (in as little as nine days).  The B vitamins all work together.  Deficiency in one B vitamin affects how well the other B vitamins function.  

Please look through this post for more information on thiamine and information about correcting a thiamine deficiency....

 

[ChessFox]

Thanks a lot Knitty Kitty. I can identify with the fuzzy memory especially during the last four to five years.

So far I am having excellent results with Thiamine. I started yesterday and took one table of 300 mg at about 3:30 pm and then another tablet of 300 mg late at night. So 600 mg in total. I was already noticing a major difference by about 9:00 pm with my peripheral neuropathy but I really wanted to be sure. Well I took 300 mg this morning and 300 mg at noon and I have to say probably 95% of my peripheral neuropathy is gone! And I have been dealing with this for at least three years. So I am definitely having a major response.

You are exactly right about the B vitamins working together because I have been having tolerance issues (severe headache, very itchy skin, a little redness under facial skin) with higher doses above 450 mg of B12 methylcobalamin. The 450 mg of B12 is the amount in my B complex. I am aware that the B1, B6, and B12 all work together especially for our nerves.

Perhaps this Thiamine deficiency is affecting my ability at this moment to tolerate the high dose of let us say 1000 to 2000 mg of B12?

I have been taking magnesium glycinate since late April which I have read is a co-factor for vitamin B1. So I feel like I am fine there. Maybe I have a potassium issue because high doses of B12 can affect potassium levels or I have an intolerance to the metal cobalamin found in B12? I am just trying to troubleshoot at this point but I am leaning towards the B1 needing to reach healthy levels first to tolerate better the B12. Starting tomorrow I think I am just going to take my B complex which still has a significant amount of B12 and see if some these other symptoms improve.

In case this additional information helps I have been taking iron, calcium, vitamin D3, and a multivitamin since late April. What happened was I happened to have half of a B complex bottle and a bottle that combined Vitamin D with B12 and took them as well in late April. My concentration and memory dramatically improved but then they ran out and I thought the B vitamin amounts in my multivitamin would be enough but in my case they were not because my concentration, memory, etcetera all really suffered. But I am hoping to get back there sooner or later.

[knitty kitty]

@ChessFox,

B12 is a special B vitamin.  All the B vitamins are water soluble, but B12 can be stored in the liver for long periods of time.  The other B vitamins are not stored this way.  

You may have replenished the store of B12 in your liver since you've been taking it several months now.  Higher doses which caused your itchy skin and headaches could be a sign you've filled up your deficiency in B12 stores.  The amount of B12 in your B complex is sufficient for daily use.  I doubt it's a tolerance issue with the metal Cobalt in B12.  

Be aware when first starting thiamine you may experience some yucky feeling days, but keep taking the thiamine.  This yucky feeling will go away in a week or so.  It's your body adjusting to having enough Thiamine to function properly.  Also, I've found taking thiamine late in the evening will keep me awake.  I take thiamine in the day.  You do want to keep your daily dose at 600 mg or more a day.  I was taking 1500 mg when I was severely deficient.  I've dropped that back to 600 - 1000 mg.  I take the higher dosage if I'm physically active outside in hot weather, ill, or emotionally stressed.  These are times everyone needs more because our bodies need more at those times. 

It's great you're taking magnesium already.  Yes, thiamine does need magnesium to help it work.  Be sure to take your minerals separately from each other.  Magnesium and calcium have a tendency to coat the digestive tract making absorption of other things difficult.  (That's why Milk of Magnesia and Tums are such good stomach settlers.)  Be sure to take iron with Vitamin C and Riboflavin (B2).  

Thiamine likes to work with Niacin (B3).  Niacin will help with your brain function and peripheral neuropathy, too.  You'll want to take the kind of Niacin that causes flushing.  The non-flushing kind won't have the same effect.  And the time released forms can cause intestinal damage.  I take niacin in the day and tryptophan at night.  Our bodies can turn tryptophan into Niacin and vice versa.  Tryptophan is needed to make melatonin which helps you sleep.

I'm so thrilled you are having wonderful results with the thiamine!  

Kitty

 

[ChessFox]

Thanks knitty kitty. This is all extremely helpful and a really great reference.

The numbness and tingling in my hands and feet have not returned and it has been longer than 36 hours. Before I was having these symptoms quite frequently throughout the day.

My nerve activity throughout the body has also really settled down. The final 5% of nerve activity left probably needs more treatment time.

I am taking now about 1500 mg of the thiamine right now per day and splitting that up between morning and noon.

Currently I am dealing with extreme fatigue, extreme sensitivities to hot and cold, and memory issues. These could all be thyroid related. I am hoping that by improving this thiamine issue that the thyroid problem will go away. I did see a few discussions here on thiamine deficiency and thyroids.

I will take a look into the Niacin (B3) that causes flushing and tryptophan.

These last few weeks, I have been talking to family member a lot about the vitamin B deficiencies. Well, she told her friend who has a son really struggling with a lot of symptoms. So they asked for a more complete analysis of his blood from the doctor and found out after that he is not absorbing B12. He may have pernicious anemia. So he is starting shots. Hopefully they really help him! He has struggled with explosive episodes quite frequently. I have a feeling that his mood will probably stabilize. I think he has another deficiency too but I was not told specifically which vitamin or mineral. His mother is still incredulous that everything could be due to a few deficiencies. But I imagine once she starts seeing results and changes in her son that she will become a firm believer. 

Thanks again.

 

[ChessFox]

I hope that you are doing well knitty kitty.

I just found out that I am very intolerant of histamine. Currently, I am not sure what could be the root cause. I tried an antihistamine and noticed how good I was feeling. So since then I have been eating low histamine foods and feel really good. My peripheral neuropathy is better as well as many other things like mental clarity, fatigue, sense of balance while walking, anxiety is extremely low, sensitivity to temperature much better, and less itchy.

Right now I am looking at starting a probiotic that will help my gut grow bacteria that can help me tolerate better the histamine. I am going to keep an eye out for the right strains because apparently some can increase histamine.

I did read that some of the vitamin and mineral deficiencies can affect histamine tolerance. I will probably have to rule out the DAO enzyme too.

It could take three or four weeks for the histamine to clear out of the tissue. I am not going to stop the high dosage of Thiamine because I noticed dramatic improvement from it. 

One antihistamine made me extremely sleepy and another really dizzy. Unless I accidentally eat something with high levels of histamine and feel worse I probably will not need to take an antihistamine today. I have not felt any surge of symptoms immediately after eating which was happening to me before especially after yogurts, peanuts and vanilla ice cream. In fact I really do not crave anything really sweet like I was before and can go longer without needing to eat. So maybe this is affecting my blood pressure.

[knitty kitty]

@ChessFox,

I am so happy that you are seeing benefits from thiamine!  Thank you for sharing your results with us on the forum!

You may need to add a Vitamin C supplement.  Vitamin C is a histamine destroyer.  I take Nature's Way brand Sambucus Elderberry Gummies (has flavonoids that help Vitamin C) and a Vitamin C supplement (500mg).  

Another helpful thing is to eat locally produced honey which helps with allergies to pollen (we have lots of pollen year round here).  

I'm so happy you are feeling better! 

Kitty