I will keep this brief as it hurts but all the other stuff now I’m short on b12 according to quack now I’m given some kind of cobalt wonder if you guys know anything helpful
Hello: I will keep this brief as it... - Pernicious Anaemi...
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Darwin196
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HAve you been started on hydroxcobalamin b12 injections if on the UK?
what do you want to know?
cyanocomolin I think tablets whether they will help is it this making my joints so painful will it happen again I was level 10 out of 10 agony thanks
Do you mean cobalamin . which is vitamin B12 ? There are a few different forms of it .
Hi, given how long you say you have had neuropathy I am concerned but sadly not surprised that you've only just been given B12. I am only just beginning to get to the bottom of my B12 and folate deficiency and that has been 22 years plus. Have you had all the B12 tests done now and do you have results for any old ones ? As well as serum B12 you really need active B12, MMA, homocysteine, intrinsic factor antibodies, gastric parietal cell antibodies, serum gastrin, folate, B6 and (optimistically) B2. All of the B vitamins can have underlying genetic disorders of metabolism so you can be deficient with 'normal' serum levels. How low are you now, to prompt treatment, and why oral rather than injections? Was this a GP and are you being referred or do you already have a neurologist? Best wishes
a cobalt wonder indeed (B12). And its quite possible everything will start to feel worse initially before starting to feel better. I'm not sure why you seem to say your doctor is a quack because if they identified a B12 deficiency thats an indication they have more intelligence than many other doctors including the idiots who told me I was overdosing B12 when I went to check my B12 status with them when my neurological symptoms started 3 years ago.
If you're very deficient, injections may be a more effective route to replenenish B12 stores than tablets since only very small amounts at a time are absorbed from tablets. Would be interested to know test results and any suspected reasons for the deficiency.
your bio says you've suffered 30 years. It sounds like you need B12 injections, not tablets. You possibly are unable to absorb b12 in your gut. Have you been tested for B12 deficiency/PA?
tests you should have
active b12
MMA
IFAB intrinsic factor
homocysteine
folic
If you're in so much pain you can't type, you need to find a new doctor and don't let them off the hook until they give you all the tests I mentioned and more. Do you have gut issues? Numb feet hands legs? Brain fog, do you get your words mixed up? Sores in your mouth? There are so many symptoms. Here's a list.
b12-institute.nl/en/symptom...
so these tests what would they show how would it help do you not think this flare up is fibro or do do with heat but b12 missing what does it mean so much pain in my arms hands feet absolutly unbearable Yer diverticula disease they said fibro fog but im not sure thanks for listening
I'm sorry you're in so much pain. FND and fibromyalgia are both "syndromes of exclusion" and not diseases with an organic cause. But often people with these syndromes/disorders have a true underlying disease, often autoimmune in origin, like Pernicious Anemia, hypothyroidism, Addison's disease, etc.
Finding a doctor that will run the tests EllaNore & bookish suggested will be very helpful. They can help prove a B12 deficiency. And if you have a b12 malabsorption problem like pernicious anemia, tablets won't do much to help, as others have already said. Best not to take any B12 tablets until you can get testing done.
The only problem is that sometimes tests will come back normal. It happened to me. I had chronic fatigue syndrome and fibromyalgia symptoms, and worsening b12 symptoms, burning all over my body, I could not think clearly. Everything came back normal because I had been taking B12 tablets. Injections helped anyway and all the nasty have almost all resolved (i had to address hypothyroidism as well). Here is how I went from mild symptoms to excrutiating burning pain and total numbness over the period of several decades: healthunlocked.com/pasoc/po...
Anyway I'm jumping ahead too much. A good start is to get the testing done with a doctor that will work with you.
thankyou disorder of exclusion ? Will insist on tests and hope thanks
Sorry for not explaining! Disorder of exclusion, meaning that after considering and rejecting every other possible real disease, they throw their hands up and say you have this Syndrome or Disorder. But it's only based on a collection of symptoms. There's no blood test or imaging test to diagnose fibromyalgia or FND. They can only "diagnose" them after they've ruled out every other possible cause.
The problem is that they don't really try too hard to exclude all the possibilities. And even if they say they tested and then excluded everything. I would argue they didn't try hard enough to find the underlying problem.
So on this forum we try to look for those underlying causes, like pernicious anemia, stomach surgery, B12 lowering drugs like metformin or PPIs, genetic issues, functional b12 deficiency, and/or other issues like celiac, hypothyroid, or other autoimmune diseases (there are many). Symptoms serve as a guide to help and narrow down what issue(s) could be investigated. Symptoms sometimes overlap, but it doesn't mean there's no underlying physical/organic cause. For example, fibromyalgia can be both hypothyroid and b12 deficiency.
Do you have any blood test results you can post? We often check each other's labs on here because often doctors will say you're "normal" but in reality they are far from normal. You can request them from your doctor practice's reception, and it is your legal right to have them.
Please keep asking if you have questions, that's what the forum's for!
aha yes all normal they kept saying but I don’t see how it can be
thankyou so much for listening Ifeel so alone and fobbed off
You're very welcome! ☺️ I think all of us here understand... Most of us have been in your shoes.
If you have any existing blood test results you want to share, it would be good to start a new thread.
Here are some good places to start reading about B12 deficiency b12deficiency.info/what-is-... and pernicious-anaemia-society.... . It can be a lot to take in at once so take your time. Others may be around to post more info.
I'm off to bed now but know you're not alone. It's not for nothing these forums have tens of thousands of members! Glad you found your way here.
I'm so sorry you are in so much pain. And sorry for such a late reply. Thankfully, jade_s has given you a far better answer than I could. She has more experience than I do and is 100% correct.
The tests I suggested are different test that can validate or prove PA. I forgot if you said you are a vegetarian or not. Vegetarians can become B12D, but they still have intrinsic factor and can absorb b12. Pernicious anemia - no IF can't absorb b12 - see IFAB below
B12 - a simple B12 test this isn't all that reliable Because "low" is a matter opinion, and the ranges vary drastically. This is the latest range they just used for me 3 days ago. How can anyone be considered deficient with such low ranges???
Standard Levels in the US - 139 - 931 pg/mL. other ranges used in the past - 197-400 and 200-500. I was 221, so I am lucky my doctor thought that was low. But he also saw my symptoms which were very bad. Symptoms really matter and you sound like you have them.
Folate There are a number of problems that can lead to a vitamin B12 or folate deficiency. These include: pernicious anaemia – where your immune system attacks healthy cells in your stomach, preventing your body absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK
MMA - methylmalonic Acid - high levels can indicate B12 deficiency - even if B12 is not that low. This test measures the amount of methylmalonic acid (MMA) in your blood or urine. MMA is a substance made in small amounts during metabolism. Metabolism is the process of how your body changes food into energy. Vitamin B12 plays an important role in metabolism. If your body doesn't have enough vitamin B12, it will make extra amounts of MMA. High MMA levels can be a sign of a vitamin B12 deficiency. Vitamin B12 deficiency can lead to serious health problems including anemia, a condition in which your blood has a lower than normal amount of red blood cells.
IFAB - Intrinsic Factor (IF) Test - the stomach protein needed to absorb B12 - This test is often arguable with doctors. Again, if you take any kind of B12 before this test and it comes back positive, they will try and say it is a false positive or could be. This is happening to me right now. and if it was negative, I would be wondering if it was because I had already started treatment. Intrinsic factor is a protein that is produced by the parietal cells of the stomach. It binds to vitamin B12, thereby allowing absorption of the vitamin by intestinal cells. In pernicious anemia, an autoimmune disorder, autoantibodies are formed against intrinsic factor leading to its deficiency. The lack of intrinsic factor then causes malabsorption of vitamin B12 and subsequent anemia. Autoantibodies can also be formed directly against the parietal cells which similarly leads to inadequate intrinsic factor activity and vitamin B12 deficiency.
A positive IFAB means you have PA
Homocysteine - Indicator for PA - Homocysteine blood test measures the amount of homocysteine, an amino acid in the body. The test is often used to diagnose vitamin B6, B9 or B12 deficiency. People with elevated homocysteine may have a higher risk for cardiovascular disease.
Good luck!
wow golly thankyou very much I will read several times to get all the info thanks
B12 count 129 is that good or bad ?
For most lab ranges this would be in the deficient range. But its possible to have severe neurological symptoms even with a B12 result in the normal range. But yours is quite low enough to signify a deficiency is likely present.
Some people are vitamin B12 deficient due to a diet that is short on vitamin B12, specifically a diet lacking meat, dairy, eggs, and fish. If you eat little or none of these foods, that accounts for B12 deficiency. Otherwise, if you eat a "normal" amount of these foods, it is likely that you are unable to absorb B12 through the digestive tract, and eating tablets will help you only a very little, way less than you need. In such cases, injections of vitamin B12 (cobalamin) are necessary.
Incidentally, the atom at the center of the vitamin B12 molecule is cobalt. "Cobalamin" is a shortened way chemists originally had of saying "cobalt vitamin".
that's interesting about the cobalt vitamin = cobalamin. I didn't know that.
My understanding is that at some point chemists discovered that a certain chemical group called "amines" were beneficial to health, and later discovered that certain amines were essential to good health. This latter group became referred to as "vital amines", which eventually was shortened to "vitamin". (It was later discovered that some compounds that belonged in the same grouping were not amines, but it was too late to change the label "vitamin". ) That's my understanding, though I am open to corrections if I am misunderstanding something.
That is so interesting Wiscguy! And it makes complete sense. Thanks for that. I love knowing things. 🤓
you're spot on WiscGuy : en.m.wiktionary.org/wiki/co...
Oh okthanks very much
You're very welcome. I was at 221 and I was in very bad shape. 129, you have to be feeling pretty bad. I write so much that I forget if you are self injecting or how often you are getting b12? I have never heard of cobalt wonder. You need b12 injections.
Not a veggie only just been offered cobalt had b12 tabs for over a year only got blood test cause of so called fibro flareup so much pain 10 pout ot 10 inhumane
OK that is good to know. Because a vegetarian would have a different set of advice. Since you are not vegetarian, I can assume your B12deficiency is an autoimmune issue. Fibro is a diagnosis of accumulative symptoms of other underlying issues. doctors reach this conclusion when they ahve exhausted all they know that can be causing a problem. It i a good thing they are looking further into and that they found your low B12. That is very low. Do you know if anyone else in your family has a B12 D. It would help to know other autoimmune issues you may have. like diabetes, arthritis, thyroiditis, etc. PA or advanced B12 deficiency is the hub condition that many other conditions spawn from. Your overall body pain "fibro" is likely a lack of oxygen getting to your cells. B12 makes red blood cells. Red blood cells carry oxygen to every cell in your body. Every organ, your brain, your heart, every bone, muscle ...everything. without B12, no RBC and no oxygen = lethargy, apathy, gut pain, leg pain, dizziness, out of breath, panting all the time because your heart isn't getting the oxygen it needs in the blood. Weak muscles, brain fog and confusion and other neurological issues that are often misdiagnosed as MS or fibro or many other things. Pernicious anemia, B12D is very misunderstood, misdiagnosed and underdiagnosed.
Have you had other tests like an MMA, IFAB, folate, Homocysteine? Do you have test results you could post here so we can help you? Your B12 is very low. You say a year you have been on B12. WE need to know how often. It is very important we get as much info as possible. I know it is hard if you don't know what info if pertinent, but all blood work would be nice to see. But most important, we need to know how much B12 you get. If your B12 is 129, then it clearly has not been enough.
5 mg a day oh low folate osteoarthritis just put on 100 microgram cobalt don’t know about family health both parents passed away g mother brought us up also gone ah well no as I understand from you gus help is quite low so no surprise i poorly doc said heat and fibro i dont think its whole story will ask for thyroid test too i think thanyou for listening have felt fobbed off and alone D
thanks
oh my life really manyyearsonomerprazole as they give anti inflammatory id be happy to not take any tbh I truly appriciate youre help what’s wrong with my typing lol Yer it’s a bitch partner is autistic so she suffers too I need to feel better yes I get about 4 hours a day I can be up n doin I was woke up at 5 today is sxxxt but really thanks why can’t they listen I think I need to shriek louder andlonger
Yer you’re right I am in pain and exhausted yes Yer my dear partner sweet of her suffers with me sad and unfair we laugh when we can I keep gettin told by doc it’s fibro I do t agree now ihave more fight to go say hey treatme right come on I need tests and help not fobbing off thanks so much you Really Really help D sleep time I’m afraid up at 5 sleep at 9 shit mann but hey thanks D
OK, but you can not wait any longer. You need to get on injections right away. You and your partner need to get the tests I posted on your other post.
Your B12 is so low, your doctor should have injected you that very day. You need to get b12 in you right away. Tomorrow! Not tablets. You do not have Fibro you have fibro symptoms. It is not a disease in itself, it is symptoms of many things all stemming from B12 D. I am willing to bet you have PA. Advanced B12 deficiency. Please get these test ASAP. But do not wait for the B12 injections. I hope someone will post the NHS guidelines for you. You are a victim of misdiagnosis. You have progressively deteriorated because you need injections not pills. You need a new doctor. I would not even deal with this one anymore. They should have instantly injected you with a B12 level of 129. For petes sake, what is that doctor thinking???
These Tests
B12 - a simple B12 test this isn't all that reliable Because "low" is a matter opinion, and the ranges vary drastically. This is the latest range they just used for me 3 days ago. How can anyone be considered deficient with such low ranges???
Standard Levels in the US - 139 - 931 pg/mL. other ranges used in the past - 197-400 and 200-500. I was 221, so I am lucky my doctor thought that was low. But he also saw my symptoms which were very bad. Symptoms really matter and you sound like you have them.
Folate There are a number of problems that can lead to a vitamin B12 or folate deficiency. These include: pernicious anaemia – where your immune system attacks healthy cells in your stomach, preventing your body absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK
MMA - methylmalonic Acid - high levels can indicate B12 deficiency - even if B12 is not that low. This test measures the amount of methylmalonic acid (MMA) in your blood or urine. MMA is a substance made in small amounts during metabolism. Metabolism is the process of how your body changes food into energy. Vitamin B12 plays an important role in metabolism. If your body doesn't have enough vitamin B12, it will make extra amounts of MMA. High MMA levels can be a sign of a vitamin B12 deficiency. Vitamin B12 deficiency can lead to serious health problems including anemia, a condition in which your blood has a lower than normal amount of red blood cells.
IFAB - Intrinsic Factor (IF) Test - the stomach protein needed to absorb B12 - This test is often arguable with doctors. Again, if you take any kind of B12 before this test and it comes back positive, they will try and say it is a false positive or could be. This is happening to me right now. and if it was negative, I would be wondering if it was because I had already started treatment. Intrinsic factor is a protein that is produced by the parietal cells of the stomach. It binds to vitamin B12, thereby allowing absorption of the vitamin by intestinal cells. In pernicious anemia, an autoimmune disorder, autoantibodies are formed against intrinsic factor leading to its deficiency. The lack of intrinsic factor then causes malabsorption of vitamin B12 and subsequent anemia. Autoantibodies can also be formed directly against the parietal cells which similarly leads to inadequate intrinsic factor activity and vitamin B12 deficiency.
A positive IFAB means you have PA
Homocysteine - Indicator for PA - Homocysteine blood test measures the amount of homocysteine, an amino acid in the body. The test is often used to diagnose vitamin B6, B9 or B12 deficiency. People with elevated homocysteine may have a higher risk for cardiovascular disease.
I have a toothpaste tube round the Apple Pencil so I can hold it to type tube stuffed so is bigger to hold silicone tip on pen arthritic fingers or maybe something else but the bloody hurt
ok thankyou I shall do so demand a new GP and state what I have been told and that I cannot put up with this situation any longer if no action satisfactorily will keep nagbagging if still no action will take all info to nuffieield thanks so much Dusty
Ok, that is great. Please don't wait to get the B12. Even if you have to go to a B12 health salon that sells them for $30 an injection, you need B12. You need to keep all your blood tests printed out. I am just astounded that your doctor didn't start you on injections instantly. Although it is best to have these tests with no B12 in you so that you get the best and most accurate results. Not even tablets. So get the tests so you can get on B12 right away.
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