Mar 30, 2011

Check Your Vitamin Levels!

I had what felt like a million blood tests when we were trying to figure out my diagnosis, for nine months before we realized it was POTS. Then it seemed like I had a few hundred other blood tests once we suspected I had POTS, because we were trying to find the "cause" of my POTS symptoms.

Well, we don't know for sure what's causing my POTS. But, I went to a holistic doctor who ran some blood tests to look at my vitamin levels. Sure enough, he figured out that I had really low Vitamin D levels. Then I was referred to a hematologist, and he figured out that I also had really low iron levels. My family doctor also suggested that I try a Vitamin B-12 injection, to see if it would give me more energy, and it did, even though my vitamin B-12 blood levels were within the "normal" range on my blood tests.

If you have POTS, I highly suggest getting your vitamin levels checked out by a doctor experienced in vitamin testing. So many POTSies have gastrointestinal issues that can interfere with the proper absorption of vitamins, and vitamin deficiencies can further complicate any chronic illness. And for some "lucky" POTSies, a vitamin deficiency could actually be the underlying cause of your POTS. I say lucky because if a vitamin deficiency is triggering your POTS symptoms, it can usually be fixed with supplementation of that vitamin. For example, doctors know that sometime POTS can be caused by peripheral nerve damage. And sometimes peripheral nerve damage can be caused by a Vitamin B-12 deficiency. So if you have POTS and confirmed peripheral nerve damage and you're Vitamin B-12 levels are really low, that could be the underlying cause of your POTS problem. In theory your nerve damage may be able to be reversed if you get your Vitamin B-12 levels back to normal, with a special diet and/or B-12 injections. That's because peripheral nerves can repair themselves and even grow back about 1mm per year in ideal conditions.

Some more "traditional" doctors will tell you that testing vitamin levels in your blood is not worth it because the tests are unreliable, or that "if you're eating healthy, you're levels are fine." Some of these "traditional" doctors will tell you it's pointless to test your vitamin levels because some of your vitamin levels change so rapidly in your blood that a one time blood test may not reflect the overall levels. Each vitamin is different, and some can be measured accurately with one blood test, and others have to be measured several times if you want a more accurate picture. If you're doctor thinks vitamin testing is bogus, then seek out another doctor until you find one who knows how to run these type of tests. An doctor specializing in alternative or holistic medicine, and a hematologist are probably the two types of doctors who you may want to start with if your regular doctor won't help.

Here's what I have learned about Vitamin D, Vitamin B-12 and Iron, as it is related to POTS:

Vitamin D
There are research papers that say that low Vitamin D levels are commonly seen in POTS patients. I'm not sure if it's because so many of us POTS patients are stuck indoors not feeling well most of the time, or because we have trouble absorbing Vitamin D from the foods we eat, because of the gastrointestinal problems that so many of us have.

Vitamin D has many functions in the body. It is important for proper functioning of your immune system, cardiovascular health, neuromuscular functioning and bone density. It prevents inflammation and plays a major role in promoting the absorption of calcium from your intestines.

Vitamin D comes in a few different forms, each of which plays a different role in our body. Vitamin D2 (ergocalciferol) and Vitamin D3(cholecalciferol) are the two most important forms of Vitamin D that out bodies need. Vitamin D2 is absorbed from the foods you eat and Vitamin D3 is produced when your skin is exposed to sunlight and ultra-violet radiation.

Some doctor's will only test the Vitamin D2 levels, but you should consider having both tested. Even if you are within the "normal" range, you may want to try to get your levels up to the higher end of normal.

If you're levels are low, your doctor can give you one or more injections of IV infusions to rapidly raise your Vitamin D levels, or a high dose prescription pill that is 10,000 IU (International Units) or more. Or you can buy your own vitamins over the counter, which are usually 1000 IU per pill and, with your doctor's guidance of course, you can take several of these pills per day. Keep in mind that if your low Vitamin D may have been caused by poor gastrointestinal absorption in the first place, you may have a hard time absorbing the full dose of the pills you take. To get the best bang for your buck, be sure to eat some fatty foods with the pill - like peanut butter, meat or dairy.

If you tested low and then you took large doses of Vitamin D to try to raise your levels back to normal, you may want to get a follow up test to make sure you've corrected the low levels. Then your doctor may want you to get regular supplements to maintain an appropriate level.

If you're indoors a lot, or all covered up when you go outside because it's a chilly winter day, or if you're slathering on the sunscreen on a warm summer day, you're not going to get the benefit of Vitamin D production from skin exposure. And most people who live in the US live too far north to get enough Vitamin D from sunlight year round - especially in the winter months when the sun's rays aren't as strong, there are fewer hours of daylight and we are all bundled up in doors because of the cold weather.

Of course, everyone should eat a healthy diet with plenty of Vitamin D rich foods like fatty fish, beef liver, fish liver oils and UV-irradiated mushrooms (exposure to light causes the mushrooms to produce Vitamin D2 just like you're skin). Many foods in the US are fortified with Vitamin D, such as breads, cereals, and milk. This is to prevent Vitamin D deficiency illnesses, like rickets, osteomalacia and osteoporosis (because beef liver and fatty fish aren't at the top of anyones' favorite food list!). If you eat a gluten free diet like I do, you may notice that most gluten free cereal and bread products are not fortified with extra vitamins. Similarly, if you are lactose intolerant like I am, you may not be getting any Vitamin D fortified milk in your diet. Some soy and rice milk products have the same vitamins added as milk does, but you should read labels carefully to be sure. Trader Joe's "Rice Drink" is fortified just like regular milk, if not better. Silk makes several forms of soy milk, some of which are vitamin fortified just like regular milk.

Vitamin B-12
My Vitamin B-12 levels were not low, but my family doctor suggested that I try a B-12 injection anyway, just to see if it made me feel any better. She said lots of her patients feel more energy after a B-12 shot. My grandma had severe emphysema and was very anemic towards the end of her life, and she always felt better after a B-12 shot, so I decided to give it a try. Sure enough, I feel much better for about one week after I get the shot. Yeah, the shot hurts a little bit because it's given intra-muscularly, and my shoulder feels a little sore for the next day or two, but it's totally worth it. It gives me some energy, and I seem to have less vertigo and dizziness, less shaking/adrenaline rush feelings and a little bit better breathing after I get the shot. I was getting it once a month and then feeling like crud for about three weeks in between shots, until another doctor told me I could get the shots once a week. We're waiting to see if my insurance will cover weekly shots, but even if they don't I may pay for it on my own because it makes me feel so good.

Vitamin B-12 is one of the family of B vitamins that are essential to good health. B vitamins are needed for many body functions, but B-12 may be the most important, since it is needed in every cell in the body. B-12 plays a key role in the functioning of your brain and your nervous system. B-12 also plays a role in red-blood cell production. If you have any neurological problems, if you have the hypovolemic (low blood volume) type of POTS, if you have any internal bleeding, such as from a stomach ulcer, or if you are suffering with fatigue and low energy levels, you should ask your doctor about trying a B-12 injection.

Vitamin B-12 is found naturally in animal products like seafood, liver, beef, egg yolks and cheese.  Vegans have to take extra precautions to avoid a B-12 deficiency, but this can easily be done by ensuring you consume enough B-12 fortified vitamin supplements, soy products, plant milks and cereals.  The vegan sources of supplemental B-12 use B-12 produced by bacteria, not animals.

Iron also plays many roles in the body, but the most important is probably iron's role in the blood. Iron is an essential part of hemoglobin, the red blood cell protein that binds with oxygen to carry the oxygen to cells throughout your body.

Iron is absorbed by our gut from the foods we eat.  There are two types of iron containing foods - those from animal sources, like beef, liver, turkey, etc. and those from non-animal sources, like black beans, lentils, kidney beans, dark leafy greens and raisins.  Your body needs Vitamin C in order to absorb the iron from the non-animal sources.  Some processed cereal and bread products are enriched with iron as well.

If you have chronic blood loss, which can happen from hemorrhoids, a heavy menstrual cycle, endometriosis, a bleeding ulcer or any other internal source of bleeding, you can develop anaemia (low red blood cell count) over time. There are many different forms of anaemia, and a hematologist would be the best type of doctor to see for the proper diagnosis and treatment of any blood related condition.

Sometimes your iron levels have to become very low before you even develop the symptoms of anemia. Iron deficiency anaemia has many of the same symptoms as POTS does.
-extreme fatigue
-Pale skin
-Shortness of breath
-Fast heartbeat
-Dizziness or lightheadedness
-Cold hands and feet
-An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome)
-Inflammation or soreness of your tongue
-Brittle nails
-Unusual cravings for non-nutritive substances, such as ice, dirt or starch (this is called "pica" cravings)
-Poor appetite, especially in infants and children with iron deficiency anemia

POTS researchers have done blood volume tests on POTS patients using a Daxor testing machine and a tiny amount of radioactive dye, Iodine-131 (an interesting side note: I-131 happens to be one of the radioactive substances escaping from the Fukushima Nuclear Power Plant in Japan and is tainting Tokyo's drinking water). This Daxor test can precisely measure the total volume of blood, the total red blood cell volume of the blood and the total plasma (clear) volume of the blood. The found that both the red blood cell and plasma part of the blood were equally low in POTS patients. The Flourinef, high fluid intake and high salt intake that most POTSies are prescribed is meant to address the low plasma levels. However, even if your plasma levels are normal, if you have low red blood cell volume, you're body will not be able to deliver oxygen to your cells efficiently, which can lead to fatigue, exercise intolerance, chest pains and shortness of breath. If you have POTS, especially the hypovolemic type of POTS, then you probably have all of these symptoms.

Some POTS experts have used erythropoietin, sold under the brand names Procrit or Epogen in the US, to treat POTS patients with low blood volume. Erythropoietin is a hormone needed by the body to produce new red blood cells from your bone marrow. Taking these drugs will increase red blood cells production from the bone marrow, which should increase blood volume. However, these drugs can cause very dangerous side effects and complications, like blood clots. They are also very expensive and your insurance company may make you jump through hoops before they agree to pay for it for POTS. It is usually used in cancer patients who have developed severe anemia after chemotherapy treatments. However, if you have low iron levels, correcting your low iron may be an easier and safer way to start treating your hypovolemic POTS that erythropoietin drugs.

There are a number of different tests your doctor can run to check the iron levels and your bodies ability to produce red blood cells. If your doctor finds that you have low low iron levels, he/she may recommend and IV infusion or an injection of iron. I purchased an iron supplement from the Vitamin Shoppe, but my doctor told me to throw it away because he didn't think it would help, especially because we suspect my iron deficiency is due, in part to a malabsorption problem. Malabsorption just means that my gastrointestinal tract is just not absorbing nutrients as efficiently as it should from the food I am eating. I am already eating such a healthy diet, with lots of iron containing foods, so my doctor decided that eating more iron wouldn't be enough to help me, since my levels were so low. He also said that many iron pills cause gastrointestinal upset, like diarrhea, cramping and constipation, which could throw my already sensitive tummy off track from the slow progress I have been making in getting it back to normal.

You may not see results right away when you start treating your low iron levels. Your body can only process about 100 mg of iron per day, so it may take several IV infusions of a period of months to get your levels back to normal, and possibly longer if you use vitamin supplements. A friend of mine who had cancer treatment related anemia said she usually felt sick to her stomach for a few days after an iron IV infusion, but then she was back to normal, and eventually regained her energy levels once her iron was at a healthy level - so she said it was worth it to feel a little sicker in order to get healthy in the long run.

After I've had a few of these iron IV infusions, I will post how it went.


  1. I also have randomly been told I have POTS thanks to your blog and a few friends I got my doc to agree for some vitamin level testing. Thanks!!!
    Please email me if you want to at

    My name is Raquel, thanks!

  2. Great write up!!!!!!!!!!! Thanks so much for taking the time to do this.

  3. This is really helpful, thank you!

    One other thing for POTS patients who are anemic and may be having absorption issues -- pediatric hematologists put my daughter through several years of hell by pushing high-dose oral iron on her (it didn't do anything, since it was an absorption problem, but it ramped her EDS-related GERD up to epic levels), and IV iron helped, but it didn't "stick."

    We moved to TX and found a non-pediatric hematologist (she was 18 at that point), Dr. Birenbaum, who turned out to be a miracle worker -- he asked why no one had ever tried FeraHeme, since the IV iron treatments would only last for a few months. FeraHeme is a different infusion treatment (ferritin coated by a type of cholesterol to ease absorption), it only has to be done once a year, and it got her ferritin and serum iron levels up to normal range for the first time in four years.

    If IV iron gives a brief bump but drops off and doesn't improve your ongoing anemia, consider asking your hematologist about FeraHeme -- it was an actual life-changing drug for us.

  4. Thank you so much for writing this. I have been struggling with debilitating nausea for 6 years now and have has what seems like every test in the book done. I was misdiagnosed with Addison's disease and put on corticosteroids for 2 years before finding out I didn't have Addison's. Then was diagnosed with pots shortly after. I've been anemic since puberty but my body doesn't handle iron supplements well and they don't absorb properly. That being said no doctor has ever suggested that all of my symptoms could be iron deficiency. For 6 years and tons of blood taken not one made the connection. I'll be going to the Dr next week after finding my ferritin count was 3. Hopefully infusion will help me. As it stands I can't eat hardly anything without getting more nausea so I'm really excited to see if iron wI'll make my pots symptoms disappear. Your post helped me so much. Thank you

  5. My doc put me on 2000IU when she saw that I was low on vitamin D (this was mid winter). After 1 month we retested and I was STILL low.. yet she told me not to take anymore than 2000IU. Well I didnt understand why she wouldnt want me to up my IU anymore if I was still low.. she told me that it wasnt that my body wasnt absorbing it from the supplement, but that my body was burning through it. Well with that being said, I upped my dose to 6500IU per day.. and I still feel like crap.