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[QUOTE=TracyRae;4259339]I know it's confusing but there are always 2 possibilities. If you have a B12 deficiency, like I do, you have megaloblastic anemia. That is anemia from B12 deficiency. To have pernicious anemia, you lack intrinsic factor, a product of the somach, that takes B12 from food and distributes it throughout the body. To find out of you have pernicious anemia, they do what is called a "schilling test". It's too hard to explain so if you are curious, look it up under search. But if they have never done that, than you must just be deficient. I have been getting B12 shots for 10 years because I had been anemic when it was discovered, and even with the shots my B12 level dropped to 324, which they consider anemic, so I am now getting my shots twice a month instead of once, just to get my levels back up. It does take time to build it, but normal levels of B12 are 180-914. Although most Drs. tend to think under 500 is anemic. So they prefer you to be at the higher end.[/QUOTE]

But I read somewhere that megaloblastic anemia is also called pernicious anemia? My doctor told me that I don't have anemia, he checked my intrinsic factor, he said he doesn't know why my B12 level is so low unless it's to do with my diet...but I'm not a vegetarian, my diet is varied. You mention that anything above 180 is in the 'normal range', but you also say that most doctors reckon that anything under 500 is considered anemia, so they are saying that anemia is considered normal?

Interestingly my B12 went up from 91 to 101 BEFORE I started my injections, I had the blood test before I took any shots, I only got the results last week. My doctor is going to check my B12 again after my next shot in late august, then we will see if the injections have helped.

What type of B12 are you injected with, Cyanocobalamin?
[QUOTE=bellagal;4265554]hi,i just wanted to add that it is worth it to get a fibromylagia diag.your gp can send you to a rhumatolojist for this and there are a few different tablets that can help you with pain.i had been in so much pain all over my body for years and my gp kept saying i had a viris or flu.i stopped going and suffered in silence till i could take no more of the pain,night sweats,tiredness boby aches arms and legs felt like led weights were attached to them and i had nerve pain all over body.many other symproms sore skin felt like i had been burned.my rhummy sent me to his pain clinic and put me on dyhydracodene and gabapentin im also on a patch called butrans.i have the pain under control some of the time but not all,i now have the odd good day were i can leave the house for a little while.dont rule out being diag with fibro you should get help for this as i think you could have it ( no im not a dr) just by your symptoms.also iv been getting my bloods done every month since aug o9 and my b12 is low im now waiting on results of thyroid ters and ceoliac disease also perniciouse anaemia.i get my results this week so we seem to have some things in common.i was happy that you got so many replys as iv been worrying myself sick due to waiting on these results and wondering why my gp hasnt put me on b12 injections.i was at hospital reasently and they asked me how i was doing on the injections and when i said i wasnt on them they called my gp to find out why.ill find out more when i get my results im not a vegetairn either and my diet is varied,but i cant eat daity as i get bad diorrea and vomiting even with a sip of milk.i wish you the best of health and hope you feel better soon bellagal[/QUOTE]

Hi Bellagal,

Yes it's like my legs and arms have weights attached to them. Night sweats is another symptom I've had actually but I have not had one for a long time now. I shall have to mention dyhydracodene, gabapentin and butrans to my doctor when I next see him, do any of these things have nasty side effects that can make you feel even worse? I'm sorry you have been suffering so much, sounds like you have been through hell. So you're almost housebound, you have someone that helps look after you? All my symptoms ruined my life, I can't do anything I want to do anymore. I was tested for ceoliac disease, have you got your results back now? How low is your B12? If your B12 is low then your GP should have already started you on injections, there is no point waiting for other results. When my doctor said my B12 was low he also sent me for other blood tests, but he said you can start the injections now if you want. So I said to him I don't know, you're the doctor lol, you tell me if I should start them now, then he said that I should start the injections now so I did. I think I had a blood test years ago that showed I was slightly allergic to cows milk. Thanks for the advice.
[QUOTE=Rawspice;4268783]Hi Bellagal,

Yes it's like my legs and arms have weights attached to them. Night sweats is another symptom I've had actually but I have not had one for a long time now. I shall have to mention dyhydracodene, gabapentin and butrans to my doctor when I next see him, do any of these things have nasty side effects that can make you feel even worse? I'm sorry you have been suffering so much, sounds like you have been through hell. So you're almost housebound, you have someone that helps look after you? All my symptoms ruined my life, I can't do anything I want to do anymore. I was tested for ceoliac disease, have you got your results back now? How low is your B12? If your B12 is low then your GP should have already started you on injections, there is no point waiting for other results. When my doctor said my B12 was low he also sent me for other blood tests, but he said you can start the injections now if you want. So I said to him I don't know, you're the doctor lol, you tell me if I should start them now, then he said that I should start the injections now so I did. I think I had a blood test years ago that showed I was slightly allergic to cows milk. Thanks for the advice.[/QUOTE]

hi rawspice,i hope ypur dr can give you some help soon.iv been lucky with these tablets iv not had any side effects,the first 2 or 3 days on the gabapentin made me drowsy but i didnt mind at least i got a sleep,i thought they werent helping much till i took a bad stomach bug i was constantly sick for 3 days so i couldnt take them thats when i realised just how much they wer helping the nerve pain.due to being ill iv lost my friends and am very much alone,i didnt want to tell them i was in constant pain and too weak to even hold a phone,i felt embaraced and that led them to think i didnt want to talk to them.i just felt i was moaning too much and no-one understands the pain or the tierdness,my friends thought i was deppressed and it took me a year to let them know i had arthritis and fibro,by this time we had lost the closness we once had but i did feel they couldnt be bothered with me because i was ill.they cant get the fact that i cant drink anymore or eat very much and if i did go out with them theyd say just have a drink if you your drunk you wont feel the pain,thats very wrong i did feel hurt that they didnt want to really understand my illness so iv not had any cantact with any of them now for about 8 months.i do miss them but im not going to do anything that makes my pain worse to keep them happy.sorry for the rant there.my blood test results for b12 have been under 100 i dont now the exact numb,iv also had broncual pneumonia and i cant seem to get over it im on a strong anti biotic for the second time my gp said i should feel better by thurs,heres hopeing.i dont have ceoliac or prenicious anaemia,but iv to get them done again when this infection clears up.iv also to have a glocose and thyroid test again so ill see what they say.my gp says my white cells have a very high count and thats why he wont start the b12 injections.i dont understand what this has to do with anything.im confused,,its unbelievable how an illness turns your life upside down isnt it!!although im very tired all the time i cant get a sleep,i only sleep for 3-4 hrs a night and sometimes not at all.the only thing thats kept me going is my faith.i live with my 2 children,and i have to care for my son who has cerebal palsy.im nt in a relationship for 6 years now its easier that way.can you emajin trying to sleep beside someone who cant get comfy or even sleep for that matter,but i do wish sometimes i had someone just for company.or even to make me a cup of tea haha.anyway enough of my venting i really hope your dr gets you some help really soon you dont want to suffer with constant pain.it would be nice to know how you get on.keep well and all the best for you appointment. bellagal:wave:
hi rawspice how have you been feeling lately,is the b12 injections started to help you yet.i wondered if you had asked the dr about going to see a rhumatologist yet to se if you did have fibro as you might find if you do have it then it would explain why you suffer from so many different symptoms.its not an illness id wish on anyone its too painful and really just horrid.i hate to see/hear of anyone suffering its not fare how many people suffer so much esp when others dont understand,i hope your starting to feel a little better.are you still taking the d3 forte?
iv had a rotten few weeks im really getting fed up with having fibro.i was in so much pain everywere and it just feels like you have the worst flu ever,my skin feels like iv burnt it all over and im still suffering due to the pneumonia.i just cant seem to get a breath and the pain i have under and on my ribs has started to go through to my back so its just always sore.i went for a chest x-ray and it was fine.i got blood tests done over again and i dont have ceoliac or perniciouse anaemia thank god! iv had blood tests for loads of different things inc diabetes that frightend me,thankfully it was fine too.my b12 is down to 58 my gp said iv not to get the injections just yet.iv to go get a heart scan done and a spirometery test (think thats what its called) its for my breathing.ill tell you drs really no how to worry a person.they said my white cell count was very high and it was concerning him so i cant get b12 injections till they figure out whats causing it (same old excuse) as all the tests so far have ruled out a reason for it being so low.
im worried about going for the tests, not the actual test but just cause i need to go as iv had them done a little over a year ago .im also worried about the high white cells,and what it can indicate.i suppose it could be due to having the pneumonia i just dont no anymore.the weirdest thing happened my face was swollen and my eye was half closing,also my eyes were burning it was so scarry and very painful i didnt have a clue what was going on.:confused: i went to my gp and he went over everything iv just spoke about but it wasnt till i got home that i realised i didnt actually get any answers,only more things to worry about!i cant even get my pain patch butrans put up till i get things sorted with my breathing,with all the pain killers i take im still in a lot of pain its getting silly now.im so sorry im really having my very own pity party here once again lol. i really am sick of being sick and in pain !!! i didnt mean to go on so much i was really wondering how you were and of your b12 injections were helping you and if they had any bad/good effects. well rawspice if youv gotten this far i promise no more moaning after this post.lol i wish you well and maybe we can chat soon best wishes bellagal :wave:
Hi bellagal,

I haven't had anymore injections since we last spoke, after having the initial 6 jabs I'm now only meant to have one injection every three months. So I haven't seen my doctor since we last spoke either, I don't think they like it if I make too many appointments, you have to wait weeks and a lot of the time they don't seem very helpful. Anyway I'm due to have my 7th injection by a nurse at the end of August, then I will have a blood test to check my B12 levels. Then in September I will see my doctor, I will ask him then about Fibro and if I should see a rhumatologist. I don't feel any better, my legs, feet and neck ache SO much. Do your legs hurt a lot? I have a book on tmj/Fibro, I'm not convinced I have Fibro because it says tender points around the knees, with me it's my calves and upper legs. And with me it's more like my legs just generally ache all the time! I started to get stomach pain and I thought it could be down to the d3 forte so I stopped taking it, but I'm trying again, I started taking it again the other day, I read someone say it really helped their tmj. It's been hot recently so I've been in the garden getting some vitamin d from the sun. But I use suncream sometimes and I read that it can stop you getting the vitamin d, so I use suncream to stop myself getting skin cancer but then I get a vitamin d deficiency instead lol.

Have you had the heart scan now? They don't know why my B12 is so low either, they still give me injections though. 58 is low, I mean mine was 91 and that's low, someone said to me "I can't imagine what a level of 91 is doing to you because mine was higher and I was so ill" etc. I was worried at first about having the injections because of side effects, but someone said to me "with a level of 91 you shouldn't wait around, start the injections now". Why can't they investigate why your B12 is low and give you B12 injections at the same time? I've never heard about anyone having to wait before, do they think the B12 jabs could make you worse for some reason? Haven't you seen another doctor yet for a second opinion about the B12 because I think you should? That makes two of us, I'm sick of being sick and in pain as well. Lol of course I've gotten this far, feel free to moan. I'm sorry you're suffering so much, who knows maybe you will start to feel a bit better when you get your B12 levels up and you get over the pneumonia. You're in my thoughts, speak to you soon.





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