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Just a little background about me. I am 42 and was diagnosed with MS in 2001, also have had HBP since 22. In the last couple of years I was also diagnosed with uterine fibroid and have extremely heavy periods. In those two years I became increasingly worse in what I thought was MS symptoms. Unbearable fatigue, weight gain, strange cravings, ( I want to smell Pine Sol all day) muscle spasms and twitches from eyes to feet, panic attacks, insomnia, hair loss, i have almost no hair on my legs. Finally a neuro doc decided to test me for B12. It was 220 and my HMG and Hmct and Calcium and Sodium is also low. Not extremely low but under the normal. Today I had my first B12 and havent noticed anything much different really, I am worried about taking the iron supplements due to heartburn etc. Appreciate any thoughts from veterans of this disease. I don't know how long I have had this or if maybe even the MS diagnosis is wrong. Can heavy periods X2 years do all this damage?
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:)
Thyroid was checked, I believe the number was 239 or so.
Update and need Flowergirl's opinion....
Had the B12 shot a little over week ago. Tried to take Slow FE and couldnt tolerate the stuff with GERD symptoms. Thing is though I have felt better than I have felt in 7 or 8 years. The fog lifted alot but it seems to be coming on a bit now. Does that mean I need a shot ever week?

I have loaded up on red meat too. I had not ate red meat for years on top of everything else and you know what, my BP has dropped through the floor!! I have been to the ER with 200/110 several times in the past and with migraine headaches. For the past 7 years I have taken on average 2 Darvocets a day and/or up to 4g of Tylenol. This week I have taken no Darvocets and less than 1g of Tylenol. My BP has been 108/65 or less every single day. I am floored. I have done nothing different EXCEPT get the b12 shot and eat red meat. I even had to take LESS of my BP med because it was SO LOW>>>>on average I used to run about 145/95, spikes of 160/100. I want to believe this is happening but I am scared it is some kind of weird fluke yet I know it can't possible be. I want to scream and cry at the same time and demand that everyone go get their B12 checked. What do you think?
My BP has steadily increased recently -- readings of 150/95 -- and I've been placed on BP meds. I have lower B12 (338) and my doc prescribed an oral supplement.

Your BP went down with red meat and the B12 injection? That's so encouraging to hear. I'm only 35, and I can't believe I'm having these problems already. Did you try the oral prescription strength B12, or did you go directly to the shot?

Thanks for the info-
Jane
[QUOTE=irisheyes39;3556206]Update and need Flowergirl's opinion....
Had the B12 shot a little over week ago. Tried to take Slow FE and couldnt tolerate the stuff with GERD symptoms.

[B]The Poly Iron 150 that I take is located within the pharmacy, you have to ask for it. It is not a script. :) There is another that might be right for you which is, Poly Iron "Forte" and It has the B-12 in it too. It also contains Vitamin C so that you don't have to add it in extra for absorption. It is the same thing I take but added B-12. You can try it and ask your doc how much is right for you. I took 300mgs for a year and now take 150 for life I am told??????
[/B]


[B]I have read that oral B-12 IS absorbed because it is a synthetic type of B-12. When people have a B-12 deficiency they do not absorb from food due to whatever reasons. When taking oral or sublingual forms it is absorbed. A lot of people don't think that orally is absorbed because they do not absorb from food, so how could this work. It is because of the type of B-12 and in synthetic form it is absorbed. At least this is what I have read about it, I don't claim to be a medical professional by any means, only in MY home. LOL!
[/B]


Thing is though I have felt better than I have felt in 7 or 8 years. The fog lifted a lot but it seems to be coming on a bit now. Does that mean I need a shot ever week?

[B]Many people get loaded doses until monthly or whatever is prescribed. You should explain to your doc your positive progress and they may prescribe more. I had a friend that did well with the initial shots but her doc declined more frequent B-12 injections. I would take the sublingual along with the shots. I don't know if we said that yet?[/B]

I have loaded up on red meat too. I had not ate red meat for years on top of everything else and you know what, my BP has dropped through the floor!! I have been to the ER with 200/110 several times in the past and with migraine headaches. For the past 7 years I have taken on average 2 Darvocets a day and/or up to 4g of Tylenol.

[B]Wow! That's great news about your BP and I can relate to that too. I was put on BP meds temporarily when I was anemic because of the high heart rate and BP would spike to 165/100 at a doctors visit. I couldn't take it because of my stomach upset, it would burn like aspirin. Anyway, after the anemia resolved so did the high numbers. Could your meds have caused your BP to go up? I know this is different for everyone but perhaps it is the need for iron or B-12. I know if you are eating red meat (3X weekly) that it is a very well absorbed iron and you really make fast progress so this may have helped more than you know. You really need to ask your doc for an iron and get on one that you can tolerate, it is of equal importance as the B-12. When your body is deficient and finally gets what is needed you have a very profound response. I know for years I would try to begin vitamins and never could, but I felt like someone gave me a miracle drug. My family never could understand that I could feel so good on vitamins. Now I have to take a prenatal that is gentle on my stomach and well tolerated. I understand the difference that you are feeling. If you are very deficient in iron I don't think that diet alone will work so you need to follow through with the iron. Glad to hear you are doing so well, it's great to hear ~good news~ posts here. FLFLOWERGIRL:)

[/B][/QUOTE]
[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]
Thank you both for the answers. I did take the Niferx today. Didn't really feel anything especially no heartburn to speak of. Don't know about the constipation yet. Today I had a rather high pulse of 92 a few times, don't know if the pill had anything to do with that or not. Otherwise it really hasn't seemed to do anything yet. I only took one and I had a bacon sandwich right before so maybe I can work up to the two I am supposed to take and do it without eating first. THanks for the encouragement flowergirl and Japlopper, I have been through so much stuff I hate to take pills and cause more, but I guess I don't have a choice. How long did it take to feel really good Flowergirl??
I go to Morehead State University and I was researching this in a medical journal and came across a Dr. Joseph Chandy from the U.K. He wrote a paper on anemia and B12 and says that anything around 300 on your B12 is in need of drastic measures. Either injections or 2000 mcg a day in pills. This was a legit study that he has performed and people, like me, who supposed had MS and all the neuro stuff were really B12 defiecient. Incredible. I think if we get duped by so many doctors for huge bills we should turn around and send them bills for messing up....
also you mention the myelin sheath that needs B12. When I had my MRI's they give you dye to "light up" any lesions that are active. strangely none of mine ever lit up and I have since heard that non active lesions are more in line with Hypertension or such destruction as comes from ..B12 defienciency. I had a few lesions and yet was still diagnosed with MS. I am still in shock that I might be told this is an error. I may have taken interferon shots for 2-3 years for absolutely no reason.....
Flflowergirl, Need your encouragement again. I had a setback the last few days. Thursday night I had an episode of tachycardia of 120. Felt like my heart was going to explode and was short of breath. Got to ER BP was 198/110. They did an EKG and that was about it. Watched me for an hour and everything came down. This hospital is not my usual hospital and I don't think they are worth too much. I thought they should do more, but I am still here and I have been too scared to take the iron pill for fear that is what did it. But the ER says it was probably either hormones or too much caffeine, which I did have quite a bit that day. I have been feeling worse all weekend end, just anxious and wondering what in the heck is going on with me. Maybe I am just freaking out too much. Felt pretty weak today too. Could the B12 shot wear off in a week? Is this just anemia symptoms? The sob and the tachycardia?
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:)
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
When taking iron supplements, I do take caution to balance out what I am eating because iron does alter bowel movements in some shape or form ( no pun intended). The higher the dose the less constipation. When I took the FS I couldn't eat veggies at all. It would get me up out of my sleep to go to the bathroom, very bad experience. I would try adjusting your diet a little, I have found this to work. Good luck to you. FLFLOWERGIRL:)
i have been trying to take the iron for about two weeks. Kinda off and on because I had trial and error first. This is the first month in YEARS that I have made it through a period without an excruciating migraine. Thing is I stopped the niferex for a day or so because of the diarrea. I am taking a multi vitamin but it only has 18mg in it, but I am tolerating that okay. Maybe I could take the multi all month till my period and then take the niferex for a week. Sound like a good or bad idea. I am also getting B12 nasal spray soon..
Flflowergirl, I have read alot too about the PPI's causing this. I was taking Pepcid for over a year which is an H2 not a PPI but still I think you are right about there being a connection. And strangely, since I have been eating meat I have not had heartburn. I have not taken the Pepcid for nearly two weeks. I wonder if you have tried to wean off the PPI's or if eating a little bit of red meat would make a difference. I don't know why but I know that it definitely changed something in my stomach, either that or the B12 or the iron, something changed.
OH my dear Irisheyes. I sooo know how you feel! I suffer myself from pernicious anemia and my b12 got down to 24! I have researched Soooooo much that my head is filled with B12 o mania!
At a level of 300 your body will already suffer from neurological damage that can be repaired when your levels get up, hopefully.

I had weight loss surgery and through research and great Dr's i have discovered that new research indicates that the New level for low b12 is 800. Most Dr's won't even be educated on this information and refuse to acknowledge the seriousness of low b12.

I was given 100 B12 shots in one year... yes... you heard it correctly. 100 of them. I was taught by a nurse to do them at home. When my b12 level was up to 980 at the end of that first year I was lowered to a shot every other week. Now 5 months later My blood is showing a B12 deficiency again and my level dropped to 400. I have been put on a daily injection for two weeks, then a weekly injection for LIFE. Since they lowered my injections to bi weekly my energy level has gone through the floor. Luckily my iron and hemoglobin haven't gone down too far this time. Without healthy b12 levels your body can't convert iron into red blood cells to transport oxygen to your organs. It can also leave you short on air!

Ok... now for the part you all will put me down for. I am very involved in a pernicious anemia group, and they all get their supply of B12 from the same place which is available without an Rx. but... it's a veterinary supply!
I know of well over 100 people that do weekly B12 injections, or more often until their levels are well above 1000, in a healthy range. You can't OD on B12 since it's water soluble. You will pee out the extra if it isn't absorbed. You not only need to bring your blood to a healthy B12 level but you need to fill your marrow stores also before your dosage is lowered.

My Dr. and Dr's belonging to the group all insist that a vitamin is a vitamin is a vitamin. So they say it's OK to take the injections of the B12 complex for COWs! Moooo...
I told my hubby when i start mooing and scratching my back on a fence to let me know.

DO a search on CalVet where you can get a B complex bottle of 250 injections for 11.99 plus shipping.
All of my friends swear by this and you can do what needs to be done without 1000 trips to the pharmacy or Dr.

Now you can all Dis me! I don't care, I have the energy to live my life once again. I'm sold!

Every one of the ingredients have been approved by my Dr, who is a HUGE researcher for the Indiana University Medical Center.

Signed,
A recovering pernicious anemia researcher
Thank you FlFlowergirl, I am so glad you are here, I don't know what I would do without you!! I had read before about being B12 deficient and NOT getting iron injections and didn't know why that was. It has been seven hours so I guess I would have had a reaction by now. I got to worrying about getting both the same day and wondered if doc was not paying attention or something. I do have both, most likely PA and IDA together...fun fun fun. Thanks for easing my mind
Irisheyes39--Thanks that's sweet! Most likely you would have an immediate reaction if you were going to have one, but not always. If you haven't had one by now, as you say, you probably are in the clear and not to worry. Sounds like your doc doesn't mess around. However, if your did have a reaction, how in the heck would he know which shot it was from???? Does the iron leave any marks on you or do they give them properly? FLFLOWERGIRL:)
I have been looking and don't see any marks at all. In fact the shot didnt hurt a bit when I got it. I failed to find out what the name was that he gave me, but so far no problems. I was told by my neuro that he still thinks I have MS, however a mild form, but that the B12 and IDA is causing most of my problems right now. Says I will most likely have to take B12 for life, but didn't actually say I had PA. I don't feel really bad but I have noticed that everytime I take the Poly Iron for several days or this iron shot now, my BP tends to go up and remain up. It is about 148/98 right now. And it was doing so well before, I can only attribute it to the iron. Is that possible?
irisheyes39--hum...........I really don't know about that, I wouldn't think so. Iron has never been my reason for my BP to rise. Are you sure that it is the iron and nothing else? Anything could happen, everyone is so different. I had a reaction once to BP meds (in my stomach) and the docs and pharmacist all told me no that wouldn't happen, but I know that it did. My BP went high when I was anemic and would go to the doc (white coat) but it went sky high, scary!

Sorry that your Neuro says you do have MS. I guess that was just positive thinking, right? But you were correct in saying that because it does happen. If you don't mind me asking what are your MS symptoms? I still have symptoms that they can't give me answers other than anxiety dx back when I went to the Neuro. That also was incorrect but what can you do. The side of my face goes numb and tingly with a strange head feeling that I can't explain. Sometimes my foot and hand do that too. At one point I had muscle weakness so bad I could hardly walk. I also had vertigo and balance issues for a long time. Symptoms wax and wane. I have had so much testing done it's not funny. I have never seen an MS specialist for it though only a Neuro. MY internist is the one that thought of MS because of my symptoms but the MRI didn't show it. I had none of this before the anemia. I have Hashi's too but never experienced this stuff before, and the docs look at me like I'm crazy because they don't know what else to say. Your a 46 year old woman and it takes time to recover after being so ill. LOL. Whatever!!!

Glad you are not feeling really bad. Keep checking your BP daily. It may just be too much iron for you. People do that with IV so I guess that it could very well happen with shots or any form for that matter. I have never heard of this with supplements. Take care. Keep us posted. FLFLOWERGIRL:)
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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