So, three years ago I was diagnosed with a gastrointestinal disorder called gastroparesis. Basically, it means I have a lazy stomach that doesn't digest fast enough causing me to have bloating, and horrible acid reflux. As a result of this, I sort of stopped eating. It got really bad in the summer of 2009 and I lived for three months on protien shakes. In the fall of 09 I started adding more food but I have stayed away from fruits, most vegetables, and most red meats...pretty much anything that contains iron or vitamin C. lol. As I started to recover from the gastroparesis I also started to notice a tremor in my hands, along with intermittent skin tingling, and cold prickles. I also would have episodes of being really foggy, out of touch, and unable to concentrate. I took the LSAT in the summer of 2010, during which these episodes kept getting worse, and I was hardly able to concentrate at all. By the end of the test, my whole head was buzzing.
In July of 2010 the symptoms persisted and became chronic as opposed to episodes. I would have brain zaps, frequent headaches, extreme fatigue, tingling in my limbs, a feeling of electricity running through my body and an extreme mental fog. I went to see a neurologist who scheduled blood work and an MRI. The MRI came back negative for any signs of MS, pinched nerves or tumors. The blood work however came back with a ferratin/hemocritic? level of 16. She told me I had iron deficiency anemia but not real anemia and prescribed that I take an iron suppliment. I took one for four months and began feeling a little better, not nearly as bad as the summer but then I had a horrible stomach flare and tore up my esophogus and couldn't eat for 8 days. I also stopped taking the suppliment. On top of that, every month, when I have my period, I get exaughsted and the tingling gets so much worse. So, recently my symptoms have gotten really bad. The tingling moved from my legs to my whole body. It feels like my nervous system is freaking out. The headaches back, my vision blurs a bit sometimes and I'm extremely tired. Everything else I can live with but the damn tingling is driving me crazy. So I went back to the neurologist who said even after four months I had only managed to bring the ferratin up to 22. She suggested I have intravaneous iron as she is almost certain the deficiency is causing the symptoms. Until I can get that I've quadrupled what I was taking from 65mg to 260mg. Just started doing it tonight, so we will see.
I also started taking a vitamin C suppliment, but worry about my acid reflux with that. Does anyone else have a similar problem? I think I depleted my iron stores from not eating. Also I was taking a proton pump inhibitor 2X daily at 40mg every day which apparently lowers stomach acid and inhibits iron absorbtion. I'm obviously not absorbing much orally and unfortunately there is not much I can change about my diet without causing myself horrible stomach upset. I'm damned if I do, damned if I dont.
Does anyone know if I get the intravaneous iron, will I build up my stores and then just have to try to maintain it with suppliments since I cannot impliment a lot of iron rich foods in my diet. Also, does anyone share my pain with the neuropathy as a result of your deficiency?
PS: Just wanted to add that my phone convo with my doc was brief and I'm not sure if it was the ferratin or the hemocratic (sp?) levels that were at the 16-22 range. I'm a little confused on that and most other level/names that come with anemia. Either/or she requested the IV iron.
It sounds to me like a B12 deficiency, which you are certainly a candidate for, given your diet and your condition.
Ask them to test your B12. When mine was low, I had numb hands and feet, and random zaps all over my body -- it really freaked me out. I also had the headaches, the almost passing out upon standing and bad memory problems, not to mention exhaustion and never really feeling awake. Plus mood swings.
I take B12 shots every other week and Liquid Floradix 2 times a day for the iron, plus a good multivitamin and when I can think of it, sublingual B12, which is key for anyone who can't absorb it for whatever reason (celiac's, gastro trouble).
Anyway, if I miss my B12 shot by even a few days, I start requiring a nap, that's what reminds me to get my shot. My dr lets me take them myself, and it's easy, cheap and wonderful.
Also, does anyone share my pain with the neuropathy as a result of your deficiency?
I'm sorry to say that I can relate to so much of your story!
My ferritin levels are 9 and I have a huge amount of parasthesias and allodynia. I get tingling all over as well as stabbing, shooting pains all over my body - as intense as if someone is stabbing a needle into me.
FYI my B12 levels are either 1100 or 1300 (I can't recall which so it is not due to B12 deficiency.
I suspect your neuro would know to have checked that but it's worth finding out.
If you have been taking folic acid but not B12, you can be B12 deficient and have it not show up on tests. and vice versa. so I take both.
after a clear MRI, my neurologist believes the nerve symptoms are entirely due to low irn. She said that although it is not common, some people have a different than usual variation of Restless Leg Syndrome where the sensations happen at all times of day, in the whole body, and can go beyond mere 'restlessness' to having all sorts of weird nerve symptoms.
I did have the nerve symptoms ease after a few months of taking iron but by then, my stomach and bowels were so messed up from the iron that I can't take it anymore. I've tried even taking just 1-2 drops of liquid iron (compared to 1TBsp) and I still react.
I have major gastrointestinal problems and have not been tolerating the oral iron supplements well (this is an understatement .
I have extensive food sensitivities (all vegetables, legumes, meat, gluten and more) so in combination with chronic diarrhea alternating with constipation, I am not able to increase my iron by diet.
I'm at my wits end and very depressed about this so although I don't have any suggestions, I wanted you to know you aren't alone! I'm hoping my doctor may consider IV iron or blood transfusion.
I'm also so tired and freezing cold all the time (not to mention cranky and irritable which I didn't use to be when my iron was fine .
I think Ill copy some of this to use in my post so I don't have to retype it all :-)
I really hope you find some relief soon!
and ask your doc if your B12 levels are okay
The Following User Says Thank You to LibbyO For This Useful Post: Yvette18 (03-02-2011)
If i were you, i'd start taking two tablets of Sundown Perfect Iron with a vitamin c tablet (500mg) and a sublingual Vitamin B12 tablet (2000-5000mcg) every morning. I'd also take a multivitamin like Centrum with some food at a different time if the day
Sundown perfect iron is much easier than normal iron on the gut, the vitamin C helps ibcrease the bodys adsorbsion of iron. The B12 will help force up your b12 levels and might help the neuropathy. The Centrum will provide all the other "bits and pieces" the body needs.
Keep in touch with your doctor, and let him or her know what you're takng.
You can get Sundown perfect iron at most big pharmacies, if you have trouble finding it, a well known online drugstore sells a three month supply for around six dollars.
The desire to take medicines is what seperates man from the lower animals - William Ostler
I don't mean to discourage anyone but I had IV iron for 8 weeks last fall and it seemed to work beautifully, my ferritin went from 9 to 107, since then however it has been plummeting again, it went from 100 to 60 and I just had tests 3 weeks later and it went from 60 to 26....I think by the time I go back for my follow-up visit with the hematologist I will be back down to 9 or lower
I'm starting to think i have a malabsorption problem of some kind because I just found out I am severely viamin d deficient as well... If you don't have an absorption problem it may work fine for you...I felt pretty good for about two months but now I am exhausted again and the brain fog is worse...also have numbness and tingling in fingers and feet....
I'm struggling with very similar issues right now. Have you been tested for diabetes? Both gastroparesis and neuropathy can be the results of uncontrolled diabetes, and so can those feelings of brain fogginess and dizziness. You might also want to be checked for autoimmune disease. Your doctor can order an ANA test which shows if you have antibodies against your own cells.
I've been experiencing polyneuropathy for the last 3 months, but still don't have an answer as to why it's happening. About a year ago I started getting acephalgic migraines (which is just the aura symptoms - like confusion, visual disturbances, tingling, weakness - without a headache), then episodes of vertigo and nausea. I started having times where I felt really unfocused and unable to think clearly too, and having hand tremors. Then I started getting heart palpitations and weakness in my legs. Then a week of migraines with blurred vision in one eye. At the end of November I had a really acute episode and it's basically been ongoing since then. I do have periods of time (a couple hours at the most) where I feel fine and normal, but every day there's some symptom - mostly tingling, burning, and numbness in my feet.
I had a normal MRI of my brain and spine (my doctor was sure I had MS until she got the results). My thyroid tests have always been normal. My serum iron (or hemoglobin) was checked and was fine, but then they thought to check ferritin and it was 24. My neurologist said that it should be above 45 and ideally maybe around 60. He said that he didn't feel that low iron fully accounted for my symptoms, but that I might see an improvement in the tingling, fatigue, and cognitive symptoms if I got my iron up. I've been taking Slow Fe for a couple weeks now, but I haven't noticed an improvement yet.
I should also add that I had a few other abnormal blood results. I had a positive ANA which probably means that I have an autoimmune disease of some sort. I am seeing a rheumatologist and he is trying to figure out whether I have lupus, scleroderma, or another disease. Polyneuropathies can be caused by these disorders because they can cause inflammation and scarring in the central nervous system. Another thing that can happen is that inflammation of the blood vessels (vasculitis) associated with an autoimmune disease can cause nerve damage.
Anyway, I am trying to bring my iron up and see whether it makes any difference to my symptoms. I also had mildly high blood sugar (random and A1C, but I haven't done a fasting test yet) and my dad has diabetes so that's another avenue I need to pursue as diabetes can certainly cause some of these symptoms.
I hope you find answers soon. My neurologist mentioned iron infusions as an option if supplements don't work or cause intolerable digestive problems.
"I'm obviously not absorbing much orally and unfortunately there is not much I can change about my diet without causing myself horrible stomach upset."
Did you have a Hidleberg string test? Did you swallow a small pill, so they could test if your parietal cells in your stomach have quit? A naturopath can give it to you.
I had "all of your symptoms" and realized I was suffering reflux due to low stomach acid and in turn suffering from malnutrition(or actually a student of natural medicine did). and I started taking very very high doses of HCL with pepsin. I swear it saved my life. ANd yes if you take a dose high enough, the reflux will stop. But it has to be enough to actually make the LES valve in your stomach at the top to be be comfortable sensing the acid leves are high enought to actually close with each meal and stop the reflux.
I sincerely hope you can get further tests, like the antigastrin/antiparietal antibody tests, they will say if your immune system is trying to kill your stomach acid producing cells inside your body that help you digest/process food/minerals/vitamins/protein and stay or become once again, healthy.