Vitamin And Minerals

[Loulou]

My B 12 and Vitamin D are low. Blood tests were done when I was dx'd with POTS, (only because most POTS patient have low B 12 and Vitamin D). I wonder if all our Vitamins and minerals are low. I heard a doctor talk about symptoms of low Iodine and most of us potsy people have ever one he listed. I wonder if we should be tested to check all of our vitamins and mineral levels. Has anyone in our forums had them all tested? If so, how were yours?

[Always hoping]

I'll have to check to see if my iodine was tested. Very interesting. I think my doctor checked the main vitamin and mineral levels on me recently but I don't know if that one was included. While my B12 is in the low range, my D and Iron were very low. I had my 2nd IV Iron dose yesterday (2 more in the next 2 weeks) and a second B12 shot. Also taking weekly mega dose of D for 6 weeks and then daily supplements. Hoping to be like the energizer bunny by the end of this!

[Loulou]

Dr. Reveals is the doctor whose webinar I heard about Iodine deficiency. He has a book out about detoxing. I want to get it and take it to my doctors and ask if it is safe to try and get their opinion on the matter, and also get blood test to find out if I have other deficiencies that could be making things worse. I get B12 once a month and a huge dose of Vitamin D every 2 weeks. I was getting IV infusions for dehydration. They seem to help for a few days but I was unable to do it 3 or 4 times a week. check out this Dr. Reveals Iodine information. Thank you for posting.

[E Soskis]

The fatigue and malaise were becoming so great, the MD ran a Ferritin level on me and it was very, very low. My blood count has been steadily dropping for months and now, we know why. I am also receiving iron infusions - first one a couple of weeks ago and another one coming in about a week. My vitamin D was deficient and now I have to take 2000 units /day - all other minerals were fine including calcium and magnesium. I'm chalking up the low iron level to the frequent plasma exchanges I receive (every three weeks for 3 years so far) but, I don't know for sure that is the cause.

[Always hoping]

E Soskis - have you had any side effects from the IV Iron? I have been so tired it's hard to keep my eyes open! Not the normal fatigue where it feels like you are lifting a mountain just to stand up, but EXTREMLY sleepy. My Ferritin was a 3, iron 22, my D was 14 and my B was somewhere in range but low. In the last 2 weeks I've had 2 iron IVs, 2 B12 shots and 2 50,000 IU of D. I thought by now I would be full of energy! I'm almost afraid to continue the treatment for the next 2 weeks.

[JenniferInOhio]

I've had my vitamin B, iron, and vitamin D levels checked frequently for various reasons. My D runs about 20 if I am not supplementing. My iron runs low, but not enough to take an iron pill, and my B12 is always flagged as high - like 900-1100 range. What is weird, is that my 11 year old daughter who was just diagnosed with POTS has a B12 of around 1200.

[Katybug]

Elevated B12 can be associated with MTHFR gene mutations. I am just going through a bunch of this testing. This gene controls methylation processes and can cause high homocystiene,B12, and/or folate on blood tests. The test for the MTHFR mutations is a blood test. I am working with a hematologist. I'm not sure what other types of docs tend to be familiar with this.

[lfreem02]

I have had low vitamin D, carnitine, and iron levels. I had a test done for TIBC and UIBC, and the more iron I take the higher the levels are.

[Loulou]

E Soskis,

Hi..Do you know why your ferritin was so low. Were you not getting enough protein in your diet? Good luck with your doctors getting your levels back in normal range. I hope your better soon. I just think it we question every little thing maybe one of us will find the link that is causing our pots. Thank you for posting.

[Loulou]

Always hoping,

Hi. I am not sure about the hows or if we are all the same on the very low B12 and Vitamin D. I have not been able to stop mine since I have started, each time my doctors decrease the frequency and dose my levels drop right away. The one thing that I do seem to get improvement with is powerade, I try to drink at least 2-32 oz bottles a day. I have gained a little weight with them because of the sugar in it, but it does help some. The more hydrated I can keep myself the more energy I have.

Thank you for posting.

[E Soskis]

I think my ferritin levels are so low because I have been receiving plasmapheresis regularly for about three years - since this winter, I increased them to once every three weeks - I believe the iron is simply removed every three weeks. My blood counts have been steadily dropping for months and that goes hand-in-hand with low ferritin.

The iron infusion didn't hurt because it goes through my large chest AV graft - the side effects are kind of annoying. I am so fatigued and I don't know whether to attribute it to the infusion or the lack of ferritin and anemia. The infusion definitely gave me a nasty headache that lasted for several days. I also had joint and arthritic-like pain - especially in my fingers, hands, and wrists. I ran a low-grade fever for a day or two. There was improvement in everything about 4 days after the infusion but, it only lasted less than a week and now everything has returned just like before the infusion. I don't know how many I'll need to raise my levels but, the MD is only planning on one more before he rechecks my levels a month later.