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Vitamin D/Malabsorbtion
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meg_k posted:
Hi, everyone.

I've been reading people's posts and great advice on and off for some time now and thought I'd finally join up. You all provide great support to one another. And we certainly all need it!

I have FMS (with fatigue being my worst symptom) complicated by Major Depression, Generalized Anxiety, Ehlers-Danlos Type 3 and recently-diagnosed Asthma (WTF, like I needed more health problems?). I have also self-diagnosed POTS.

Like many of you, I have been tested for EVERYTHING: Lupus, RA, Sjogrens, MS -- you name it -- but I am blessed to "only" have Fibro. I am a former distance runner and triathlete who had one doctor tell me that "deconditioning" was causing my symptoms. (Again, WTF??!)

I take Cymbalta, Neurontin and Wellbutrin and have had good luck with all. I can honestly say Cymbalta did really lower my pain and Neurontin helps with tingling/numbness in extremities. I also take massive doses (physician supervised) of Vit D3 and B12 which have been at perennially low levels ever time I'm tested. I'm going to the psychiatrist in 2 weeks and will have him re-test since I've lately upped my dosages further in hope of seeing some progress.

Finally, to my question: Do others have such difficulty getting their Vit D and B12 #s up? My Vitamin D levels in particular seem averse to any movement, no matter what I do. Also, has anyone had their doctor(s) tell them that intestinal malabsorbtion was part of the picture for their FMS?

Thanks for any comments.

Happy to be joining you,
Meg_K from MN.
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dollbug responded:
Hello Meg K and welcome....MiMi in NC....a few years ago when I joined this FM support group....there was absolutely nothing discussed about Vitamin D. I was the first one to mention it and I have continued to include this in most of my posts. I am sure that most of the FMers here thought that I was *crazy*....but after a while others begin taking it serious or were just sick and tired of reading my posts reminding them about it and more and more FMers talked to their doctors about it. And then Dr. P joined us and I think he actually *caught on* as well.

OK....my point is this. There are not a lot of doctors who understand the concept of just how important Vitamin D is, for the most part. I do think that slowly but surely more and more research has been done on this and there is now more doctors open to checking it for the patients who request it. I now want to tell you that from what I have researched and found to be true (and you can also research this as well)....once we find out that our Vitamin D is low, it is almost impossible to get the Vitamin D level to *within the normal range and keep it there*....I know that it took over a year for mine to get on the *normal low average* and to be quite honest with you, I do NOT think my level would have been reached had I not *increased my Vitamin D* like I did. My doctor put me on a prescription dose of 50,000 iu for a short period of time and then told me to get the over the counter and take it the rest of my life. I took more than he suggested though when I read that it is really hard to bring it back up and keep it there.

I asked the doctor yesterday to check my Vitamin D level again and when I viewed my blood work today...I do NOT see it listed at all. (I am NOT a happy camper about this at all)


I also discussed me taking my P5P and he told me that this would NOT do anything to hurt me. I have been on this a few months and it has all but eased the lower back pain that I was suffering from. (P5P is a processed form of Vitamin B 6)

I have intestinal issues as well and yes, I do think that there is some sort of *connection to this* and I also think that some of us have inflammation which is also an issue with FM....(although research indicates no). I think that everyone is still *learning about the wrath of the dragon, aka FM* and that is a lot that is still *unknown* about it.

I happen to be one of the FMers here who has learned how to *control my FM pain with vitamins and supplements but I have found *nothing to help with the fatigue yet*....but I am still looking for *something*, as I do think there is something out there that will help me cope with the fatigue as well.

I hope this helps.

Glad you are here. Be sure and check out the info under *tips* and *resources* as well as the *member toolbox*.


MiMi

IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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meg_k replied to dollbug's response:
Thanks MiMi. Well I really hope u are able to get some (positive) results back on your levels.

I am taking 35,000 IU a week now, so we will see. I actually had to lower my B6 bc my levels were too high. Weird.

I count myself among those who has some pain relief but still struggling majorly with fatigue.

I agree. I think there will be more solution(s) on the horizon for us.

Anyway, thanks.
 
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booch007 replied to meg_k's response:
Good morning Meg and glad you jumped in to share your story. This is how the board works. I am sure there are many that read and don't even share...."what do I have to contribute?" Well, you neverknow how it may be just what someone needs to read...

I was wondering if you are taking the Vit D WITH A MEAL...
Maybe in the evning with dinner...as it is in OIL and needs your liver to help absorption. Fats need lipase and your gall bladders "bile" to emulsify fats for uptake. So going with the stream of water might help you a bit more....(just a thought)

You did the 50,000 a week for a month or two and rechecked?
Are you using perscription Vit D or OTC dosing?

The other thing on B12...this is a tricky guy too. Not well absorbed by the gut and if you really need it...an injection once a week for a bit to get you up is what we do. Then once a month after.

As far as intestinal malabsorption we have a lot of people with "Leaky GUT' here. People who have been labeled IBS and it was allergy' reponses say to gluten and that injured or changed the intestinal lining to allow bigger particles into the body and it creates negative reponses at cellular level. gets the immune system so upset.

We are meant to be a mean green machine...taking in the healthy and needed nutrients and filtering and passing out the bad......well that is maybe as a child and then life takes you over with bad habits and abuse of the system.

So look up leaky gut syndrome and see if that fits his statement better. They say this is why we have reactive pain to things we eat. I know I am developing more allergies to foods after the gluten was a reality. A naturopath diagnosed me and I am gluten free almost all the time. I try very hard to stay pure....with that is lactose intolerance as that is the tip if the intestinal fingers (villi) that absorb nutrients. So they always go together. Eggs and I, Nuts and I and medications....

I have to watch meds that are made with gluten in them..I will get diarrhea every time. So there s a gluten free pharmacy on line that helps find the company that doesn't use gluten for a filler. See how this crap happens and you have to have your eyes wide open all the time.

Hopeful for a better Vit D for you and "get in the sun!!" Roll araound out there.....bathe in it..use the Sun God as a supplement!!

Good luck, keep humor in your life as this is a tough walk to be on. Hugs, Nancy B
 
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Anon_2912 responded:
Actually low Vit d has always been an issue for Thyroid patients. Many endocrinologists will test for it.
 
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meg_k replied to Anon_2912's response:
Booch007:

I am taking OTC Vit D 5000 IU a day with breakfast. I have been doing it for several months now ... plus lying in the sun as much as MN weather will allow. I see my pdoc in 2 weeks so hope to have labs done and see the levels rise above "insufficient." Dare I dream of 50-60 Vit D level?

Yes, I, too, have read about "leaky gut" causing a whole host of vitamin deficiency and even amino acid imbalance in FM. I wonder if we we will get to the bottom of what causes that? I don't have any food allergies I'm aware of, but certainly have have had IBS symptoms.

Someone posted recently about the "Fatigue to Fantastic" book by Dr. Teitelbaum. I had read his book and tried some of his products several years ago and didn't feel they worked for me. Now, the more I read about vitamin and amino acid deficiencies and their role in FM, I am going back to his products again -- basically mega supplements of key vitamins and key amino acids (incl some additional Vit D).

For example, I have been taking acetyl-l-carnitine 500 mg a day for less than a week (one of the ones he suggests -- also there is research suggesting this works). I am feeling really good. I am sure it's too early to attribute it to that, but something is really working this week. I am just going to enjoy it while it lasts -- whatever the cause.

I was also reading about thiamine online. That doses of around 1500 (mg or IU?) can help FM fatigue significantly.

Dollbug, I'm increasingly following in your supplement footsteps!

Take care, Honies!!

Meg from MN

P.S. Forgot to mention I take levothyroxine for hypothyroid, too. It's so weird so many of us have these same series of medical issues alongside FM. I believe more and more there is some sort of gene activation that goes with FM/CFS that is linked to all of these conditions.


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