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TOPIC: Vitamin A conundrum

Vitamin A conundrum 2 years 5 months ago #1

  • HannaR
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Hello all,
Just thought I'd post to ask if anyone has any experience with vitamin A deficiency. I am really frustrated with trying to sort this issue out at the mo! My levels have been low since they were first tested in 2013. They reached a crazily low level early last year and since then have come up a bit. However, the levels are still not even at the lower end of the reference range and I hear that ideally, you want to be at the top end of the range. I've been throwing everything at it, taking big doses, but my level has actually dropped over the past 5 months. How can this be?! My supplement doesn't seem to be working at all.

Does anyone have any experience of these kind of issues or knowledge about how to deal with vitamin A deficiency? Some possible reasons that I've come up with so far, why my supplement isn't helping include: poor pancreatic function impairing absorption of fat-soluble vitamins, or maybe a lack of iron is impairing the absorption? Just a few ideas that I've come across, but any other suggestions would be much appreciated!

BTW, I'm vegan so taking something like cod liver oil as a food source is not something I'd want to do.
Thanks very much for any ideas.
With best wishes,
Hannah
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Vitamin A conundrum 2 years 4 months ago #2

  • JSmith567
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HannaR wrote:
Hello all,
Just thought I'd post to ask if anyone has any experience with vitamin A deficiency. I am really frustrated with trying to sort this issue out at the mo! My levels have been low since they were first tested in 2013. They reached a crazily low level early last year and since then have come up a bit. However, the levels are still not even at the lower end of the reference range and I hear that ideally, you want to be at the top end of the range. I've been throwing everything at it, taking big doses, but my level has actually dropped over the past 5 months. How can this be?! My supplement doesn't seem to be working at all.

Does anyone have any experience of these kind of issues or knowledge about how to deal with vitamin A deficiency? Some possible reasons that I've come up with so far, why my supplement isn't helping include: poor pancreatic function impairing absorption of fat-soluble vitamins, or maybe a lack of iron is impairing the absorption? Just a few ideas that I've come across, but any other suggestions would be much appreciated!

BTW, I'm vegan so taking something like cod liver oil as a food source is not something I'd want to do.
Thanks very much for any ideas.
With best wishes,
Hannah

Hello, totally new to this board, but your post caught my eye and I thought I would offer what I could as I am currently working through some of my own Vitamin A issues.

First, let me say that I am not a doctor or medical professional, and nothing I write here is intended to diagnosis, treat, prevent, cure or intended to be medical advice or otherwise substitute for medical advice or a consultation with a qualified medical professional. I'm just a regular guy, suffering from MCS.

So that said...

Being that you are a vegan, can I ask what type of supplements you are using? Are they B-Carotene based? To my understanding, the human body does a very poor job of converting B-Carotene to Retinol (the active form of vit a) that the human body can actually use.

Can you give us some more details on your situation, the tests you've had and the supplements you take, etc?
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Vitamin A conundrum 2 years 4 months ago #3

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Hello JSmith567,
Great to hear from you. Thanks so much for your reply - a nice surprise to get that through yesterday and hear from someone with similar issues. Yes, I've read a lot about the poor conversion of beta-carotene. It obviously doesn't work too well in me as I eat tonnes of orange and green stuff and really should have no problem with vit A! I've been taking retinyl palmitate 150000 or more IU since spring 2014. That's a long time to be on such a big dose but I've continued as my levels have still never got into normal range. Serum retinol was 0.34 umol/L Feb 2014, then for the past 12 months, has been hovering around 1.1, normal being 1.4 – 3.8 (for my local lab anyway).
Since writing my original post, I've had the chance to do some more research. What I'm learning is that serum levels aren't totally reflective of total body stores and that they can be depressed due to other factors e.g. lack of calorie intake, which quite possibly applies to me. Obviously my levels must have genuinely got very low by Feb 2014, but now the blood figure seems to have stabilised, I'm wondering whether my total stores are actually OK and could have replenished nicely by now. I'm thinking that maybe my serum level might not ever go over 1.4, even if I'm not short of it and maybe my 'normal' is just set at a lower level? (Don't worry – not expecting any answers to these tricky questions!)
The difficulty is I don't know whether I should continue with big doses in the hope that I'll eventually get the serum level into the normal range – or whether there's no need and it could actually be harmful to be overdosing. I have no confidence in my consultant's advice, as he seems to know no more about the subject than me. Very frustrating! For now I'm going with 15-20000IU per day with a retest scheduled for 8 weeks. My consultant does seem to think though that he'd like to see my level up at somewhere between 2 and 3.
If there was some non-invasive way of assessing my liver/total stores that would be ideal and I could feel like I'm not working in the dark! I've been wondering whether there could be any visual tests that could help ascertain if I'm still deficient. As you can probably tell, this whole issue has been giving me a lot of worry! I am so keen not to get things wrong either way – too much or too little.

Please do tell me more about how you're getting on, whether you've been getting any sensible advice and what you're doing to optimise your vit A levels. Will be really interesting to compare. It does seem to be an issue for a lot of people with MCS from what I hear.
Look forward to hearing from you and thanks again for your reply. Best wishes,
Hannah
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Vitamin A conundrum 2 years 4 months ago #4

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HannaR wrote:
Hello JSmith567,
Great to hear from you. Thanks so much for your reply - a nice surprise to get that through yesterday and hear from someone with similar issues. Yes, I've read a lot about the poor conversion of beta-carotene. It obviously doesn't work too well in me as I eat tonnes of orange and green stuff and really should have no problem with vit A! I've been taking retinyl palmitate 150000 or more IU since spring 2014. That's a long time to be on such a big dose but I've continued as my levels have still never got into normal range. Serum retinol was 0.34 umol/L Feb 2014, then for the past 12 months, has been hovering around 1.1, normal being 1.4 – 3.8 (for my local lab anyway).
Since writing my original post, I've had the chance to do some more research. What I'm learning is that serum levels aren't totally reflective of total body stores and that they can be depressed due to other factors e.g. lack of calorie intake, which quite possibly applies to me. Obviously my levels must have genuinely got very low by Feb 2014, but now the blood figure seems to have stabilised, I'm wondering whether my total stores are actually OK and could have replenished nicely by now. I'm thinking that maybe my serum level might not ever go over 1.4, even if I'm not short of it and maybe my 'normal' is just set at a lower level? (Don't worry – not expecting any answers to these tricky questions!)
The difficulty is I don't know whether I should continue with big doses in the hope that I'll eventually get the serum level into the normal range – or whether there's no need and it could actually be harmful to be overdosing. I have no confidence in my consultant's advice, as he seems to know no more about the subject than me. Very frustrating! For now I'm going with 15-20000IU per day with a retest scheduled for 8 weeks. My consultant does seem to think though that he'd like to see my level up at somewhere between 2 and 3.
If there was some non-invasive way of assessing my liver/total stores that would be ideal and I could feel like I'm not working in the dark! I've been wondering whether there could be any visual tests that could help ascertain if I'm still deficient. As you can probably tell, this whole issue has been giving me a lot of worry! I am so keen not to get things wrong either way – too much or too little.

Please do tell me more about how you're getting on, whether you've been getting any sensible advice and what you're doing to optimise your vit A levels. Will be really interesting to compare. It does seem to be an issue for a lot of people with MCS from what I hear.
Look forward to hearing from you and thanks again for your reply. Best wishes,
Hannah

You've covered a lot here, and my brain is going in number of possible directions, so I'm going to throw out a few thoughts as they come to mind, and not in any particular order. Hopefully some of it might be helpful...

1.) High doses of any fat soluble vitamin (or any vitamin really) can be dangerous, and it sounds like you have been taking high doses for a long time. I would be careful with that. Vitamin A toxicity is no laughing matter. Have you had your liver functions analyzed?

2.) Are you basing your endeavor solely on the lab reports? Perhaps a bigger question is "how do you feel?" What prompted you to check your vitamin A status in the first place? Experience has taught me that each individual has different body chemistry, and just because you don't fall within the statistical "norm" doesn't necessarily mean there is something "wrong" with you. Do you have any historical data from when you were "healthy?"

3.) In terms of the liver stores; like you, I have also come across reports that indicate serum levels are not necessarily indicative of liver stores. Which for me is another reason to be mindful of possible toxicity.

4.) Regarding sensible advice from a doc? I'd say little to none regarding most of my issues. Like you, I am usually far more well read on the subject than the physician. Frustrating to say the least.

5.) In terms of possible reasons for the low levels, and please do not take any offense to this in any way, as I mean it purely in terms of fostering academic discussion and not to insult your choices or beliefs whatsoever. But can you elaborate on your vegan status? Is this a recent change for you? What is your reason for choosing to be vegan? I ask because I have had two very close relatives of mine who began a vegan lifestyle. At first, things went well for them, but after a year or two their health started to taper off and began failing. One actually collapsed in a restaurant and I had to physically carry her out. The interesting thing is once they started to introduce some animal proteins and fats back into their diet their health improved dramatically. Now both of these cases are anecdotal evidence at best, but again, it didn't take a rocket scientist to see that their bodies just didn't like a vegan diet. Personally, I've played with every type of diet out there, some for short periods of time and some for long periods of time. All with various benefits and draw backs to my overall health. What I've ultimately decided is this; clean eating is the number one most important thing in a "diet" of any kind and number two, the human body is remarkably adept at sustaining through all types of different shortages of various nutrients, enzymes, vitamins, or what have you. Our body finds a way to compensate and keep us going...albeit not in top form (think Germany c. early 1940's). That said, everyone's chemistry is different, some of us are low on Vitamin A, some Vitamin D, some are anemic, etc. etc. and many times that reason is purely genetic. The trick is in finding what works for you as an individual.

One of the things I think about often when it comes to food is this....what DON'T we know about it and its function in the body? For example, we live in a society that assumes a supplement (not saying you are like this) is just the same as a food. But do we really know this? Or are there things about food and the way it functions inside the body that science just doesn't know yet? The one thing we know for sure is that science is always 100% positive of something...until its not anymore. We thought the world was flat, and an atom was the smallest molecule on earth...time usually seems to disprove any absolute that we accept as Truth.

My point is, that perhaps your body is telling you something, maybe it wants a piece of fish or meat of some kind because there is some yet to be discovered enzyme in there that your body needs in order to effectively process vitamin A. I don't know. But I would suggest that it might be worth exploring, and unfortunately with stuff like that, science isn't usually of much benefit. It just takes a little good old fashioned trial and error. One thing we cannot deny is that at some point in our ancestral history, humans ate meat. Perhaps there is an enzyme that your body is inefficient at making that only occurs in the animal kingdom? I don't know, but its a thought.

Again, I mean absolutely no disrespect at all, I mean all of this in the most purely academic of contexts, and truly, I hope you are doing better!!!!

As for me, I continue to struggle, with MCS but will hopefully get this thing beat!

So sorry for the incredibly long winded answer, I didn't men to derail like that, but you got me interested!!
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Vitamin A conundrum 2 years 4 months ago #5

  • HannaR
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Hello again

Thanks for your reply and thoughts on the situation. I have thought through many of these issues myself but I'm afraid at the moment I'm not feeling like composing a complete reply – feeling rather overwhelmed, not by this, just in general! I've decided to stick with my previous dose and then gradually taper it down. Please feel free to update me at all with news on your own vitamin A progress any time.
With best wishes for your ongoing recovery.
Hannah
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