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I do know someone who was misdiagnosed with MS when she really had low B12 - I can't remember all the details, something about lesions on an MRI that were misinterpreted. At any rate, your B12 is very low, and it will take awhile to get it to where you're feeling better. You might do well to take the sublingual B12 tablets as well. When you're supplementing B12, you need to take a multiple B vitamin to stay in balance, eat lots of potassium (like bananas), and make sure you're folic acid and ferritin is tested as well. These are all things that need to be present to help your body heal.

The twitches are a big symptom of having low B12. When I was at 326, I had terrible twitches. It took awhile to get better - I'd feel better one day, then terrible the next. Have you been tested for pernicious anemia?

Oh, and when my B12 was really low, my blood pressure was higher than normal.

Jill
irisheyes39--I understand your post completely. I have many if not all of your symptoms. Yes, heavy periods for two years can in fact cause this to happen. Things like these go on for many years until the ferritin is drained and anemia (the last stage of iron stores) sets in. Same with B-12.

Neuro feelings, numbness, tingling and pain are usually related to a B-12 deficiency (or other vitamins and minerals), although I do not have a B-12 def myself. Your B-12 is low, they say under/around 400 CAN present symptoms although docs say 200 is normal. Craving strange non food substances and hair loss are related to iron.

There can be more than one reason for anemia or low numbers or even several. B-12 and Folic Acid usually point to a different type of anemia other than iron deficiency anemia (due to fibroids, heavy bleeding), i.e., PA Pernicious Anemia, Celiac disease (AI disease), gastritis, malabsorption and other things. B-12 can last 2-5 years w/malabsorption going on before levels go down. As far a B-12 is concerned the reasons for the deficiency can be divided into 3 cats. 1. Nutritional def. 2. Malab syndromes 3. Gastro causes. A GI doc would be the one to see for this.

You should have a ferritin test to know where you stand with your iron stores. You can have B-12 def and IDA at the same time. If you cannot tolerate iron supplements there are types that are RX and have some have none/little S/E's. I take Poly iron 150mgs that is a different type of iron for this reason. I have no S/E's. You can ask your doc. You just have to try until you find one that is right for you. But you do have to replace the iron because it makes the blood.

As you mentioned the MS perhaps not being correct. I would think that you have had all the test that would back the diagnosis. I know that the symptoms of anemia are much the same as many other things like thyroid disease, so I would also have that checked if not already. Hope this has helped. FLFLOWERGIRL:)
[QUOTE=irisheyes39;3558398]Flflowergirl, Need some more advice and encouragement. I got the rx today for Niferex, same thing as you I think. I also got another B12 shot today and feel pretty good, a little tired but still good. I have been pondering something and worrying about taking this iron. If my problem is B12 do I still need the iron?

[B]Iron supplements will correct an iron def. anemia, but will NOT correct PA. B-12 injections are required for that. B-12 will reverse the production of abnormal red blood cells.[/B]

I don't understand that connection to well, but will the B12 shots bring my iron up too?

[B]Only iron through supplements or food sources will bring up your iron levels. Iron stores (Ferritin) reflect the amount of iron stored in the body for later use to make healthy red blood cells. When depleted, iron def. anemia sets in, this is the end stage of the stores.

It is not uncommon to have both IDA and B-12 def. at the same time. What did your doctor tell you that you had?[/B]

Guess I am a chicken when it comes to taking new weird meds, always afraid of SE.

[B]Be brave and just try it:D. How much did your doctor recommend you take? If 2 daily is recommended I would start out with 1 and see how it goes for you. It works well for me and I am ULTRA SENSITIVE! FLFLOWERGIRL:)[/B]

[/QUOTE]
You need to take the iron, because when your body is replenishing the B12 stores, it draws from the ferritin. That's probably why so many people get their B12 numbers in the correct range and still feel tired. You have to keep everything in balance.:)
Yes, do take the iron. I actually felt better when I took the iron on an empty stomach verses with food. I think this is due to the fact that it takes so long for food to digest and the iron sits there longer causing upset. Drink lots of water when you take the supplement and this also gives you a much better chance. This iron is a special iron for people that get GI upset that is why it works so well. If you take the recommended dose you probably won't have constipation at all. The higher the dose the opposite effect when taking iron. When I went down to 1 daily I really had to start watching my diet because of my thyroid, I have a problem with constipation on a regular basis if I don't watch the diet and drink lots of water.

I felt like death for most of the year until my ferritin hit 20 and then I started to feel better but NOT good perhaps good compared to death. I was actually anemic for 6 months. My ferritin was a 9 and under for 7 months, it went form 9-20-35-43. When I first felt better I was extremely excited, it just takes so long for some people. I still don't feel good yet on a regular basis. I had a lot of MS symptoms that have gone with the iron replacement but some neuro stuff persists and the doc say it's anxiety which it is not. So I think that there is more going on with me than they can figure out. MS was ruled out but not by an MS specialist. I have a lot of symptoms that wax and wane that are consistent for B-12 def. but that is not the case either. My ferritin was 43 last checked and I continue to make positive progress so they think all is well. I still do not feel that I can return to work though that is my goal. Jan. was a year for me.

Hoping that you have a much quicker recovery. FLFLOWERGIRL:)
Irisheyes39--I can tell you that when your body is low in B-12, Ferritin and/or anemic, this is quite common, however, not a good thing. I had this happen even after the anemia was resolved but on the CBC at the ER my blood cells were still very small and unable to carry enough oxygen. My Pulse went to 133 and I was 101 when they finally let me go home, but it took all day. I had a 5 hr wait like that too and couldn't breathe very well either. I would have this happen to a lesser degree from eating a meal for months and it can be very scary. That is WHY you have to replace iron and ferritin levels, then it will stop happening. I have never heard of iron supplements causing this to happen. I also believe that when these things happen that you should follow up with your PCP and have basic testing done to R/O any other underlying conditions that may have caused this just to be safe. I had an EKG, ECHO and they wanted me to wear the monitor but by that time I knew I was okay and said no more tests! I guess I should have done the last test. You have to continue your replacement therapy and give it time. Sorry to hear you had a bad experience but that is part of this horrible thing. Good luck to you and keep us posted. FLFLOWERGIRL:)
Flflowergirl! Got new results...they are

Iron 26
Ferritin 9
Hgb 11.5
Hct 35
MCH 25

Would this low ferritin cause short of breath and racing heart? Hope so cause at least that is an answer...
Your hemoglobin is a little low (or low, depending on what range you look at)-and that combined with the low ferritin is probably giving your the racing heart and out of breath.

I was out of breath last year when my hemoglobin was 11, so I know it's possible. Plus throw in the whole B12 thing, and that's your explanation, probably.

I hope you get this under control soon!
Jill
Irisheyes39--I would say that it could definitely be from a low ferritin. Usually the shortness of breath is most commonly associated with a more severe anemia, lowered hgb and hct. This can of course be different for everyone. I only had shortness of breath with panic attacks. I had Tachycardia and was no longer anemic, I had a hgb of 12.9 at that time but blood cells were severely small. So, it is hard to say definitively, but easy to guess that it is most likely the probable cause. You will know when your hgb goes up and ferritin begins to build. Then you can rule it out for sure. Some of these things take time to figure out. I'm glad that you had such good luck with the iron and hope that you are continuing with positive progress and results. Your Hgb is not too bad and should build soon with iron supplements. FLFLOWERGIRL:)
[QUOTE=irisheyes39;3567243]Flflowergirl! Got new results...they are

Iron 26
Ferritin 9
Hgb 11.5
Hct 35
MCH 25

Would this low ferritin cause short of breath and racing heart? Hope so cause at least that is an answer...[/QUOTE]

When my ferritin got that low the hematologist gave me a 6 hour IV of iron. He also gave me a month of high powered folate pills Rx and I was well with in 3 weeks. A Hematologist IMO would be your new best friend. Ask your pcp for a referral.
I have both B12 and Iron Defieciency and both together make you MISERABLE. Short of breath, can't lose weight, brain fog, feeling like you are always half asleep. Since you are a guy they might not test you for Ferritin unless you ask for it or unless your HGB is really low. Doesn't look like you have a problem there. THere is a great article, I posted the name of the Doc on this thread about the prevalence of B12 deficiency and how it is mostly ignored till the patient is showing major symptoms. My doc told me that anything below 500 is not good, B12 can actually make you have serious neurological symptoms at the levels you have. But the good thing is it should get much better with the shots. I felt different the first day I took one.





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