Help need a diagnosis: Okay I've done... - Pernicious Anaemi...

Pernicious Anaemia Society
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Help need a diagnosis

Autumn11
Autumn11

Okay I've done several blood test for vitamin b12 deficiency, all came up high. In the thousands. But I supplement with vitamin b everyday. I can't live without it. I have a lot of the symptoms and I've been dealing with it for at least 5 years. I know there's other test out there and I know there's online labs. Could someone point me in the right direction..please

20 Replies
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If you are producing high test results without injections then it shows that you don't have an absorbtion problem which is half the battle.

Metabolism is a lot more complicated than just taking "vitamin B every day" so there will be a good reason why things aren't working for you. If you could be more specific we can try to help.

What - exactly, including dose amounts of each component, are you taking? There are lots of B vitamins - and other vitamins and minerals - that all have different roles and to be able to help we need to know which ones you mean.

Looking forward to hearing back from you!

Hello, yes I'm taking ultra b-12 methylcobalamin 5,000 Mcg once at night. I have high liver enzymes also. Sometimes I take a multi vitamin twice a week. Vitamin b12 is 4.3 mcg.

Autumn11
Autumn11
in reply to Autumn11

Vitamin A 2600 iu

Vitamin c 20 mg

Vitamin d 80 iu

Vitamin e 16.5 iu

Vitamin b6 0.8 mg

Folic acid 140 mcg

Vitamin b12 4.3 mcg

Biotin 66 mcg

Pantothentic acid 5.5 mg

Iodine 40 mcg

Zinc 2.4 mg

Choline 20 mcg

Inositol 20 mcg..

I take this multi vitamin about twice a week

Gambit62
Gambit62Administrator

The tests that can help clarify if your cells have enough B12 are homocysteine and MMA - both of which will be raised if your cells don't have enough B12 to recycle them.

St Thomas's in London can do the tests privately.

High B12 levels would suggest that you don't actually have PA but it is possible that you have a genetic disorder that affects how well you metabolise B12 - but that is off topic for this forum.

It could also be that the high B12 is a symptom of something else - would suggest that you try to get a liver and kidney panel done.

High doses of B12 taken orally by someone who doesn't have an absorption problem (1000mcg+) can lead to raised serum B12 levels which can then cause a reaction in some people that affects the efficiency with which B12 is transferred from blood to cells - leading to functional B12 deficiency.

If your supplements contain high levels of B6 then you could be suffering from B6 toxicity - and you should stop taking them immediately

Autumn11
Autumn11
in reply to Gambit62

Thank you for your response, I live in Texas in the u.s., where could I get the mma test done here? Are there any test online? And also I have high liver enzymes..and so they did other test and I have antibodies...so they think it's an autoimmune disorder. I'm supposed to go for a liver biopsy but waiting on health care. So this is why I think my vitamin b12 is high..and not getting a correct diagnosis.

Gambit62
Gambit62Administrator
in reply to Autumn11

I'm afraid I don't know much about the medical set up in the US - your best bet it to speak to your primary health care provider.

fortification of bread etc in the US means that they don't use the homocysteine test so much.

Gambit62
Gambit62Administrator
in reply to Gambit62

came across this link for MMA test on a youtube clip posted on TUK forum

truehealthlabs.com/Methylma...

I make no guarantees but it is another place to start.

B12 is needed for a large number of processes in your cells to run properly. People vary as to which process stop running efficiently first. The tests for homocysteine and MMA are accurate at picking up the levels of metabolytes that they are looking for but they are indirect measures of what is happening with B12 in your cells and if those processes run efficiently that doesn't guarantee that others don't.

Both MMA and homocysteine can be raised by other factors so the context in which they are done ideally needs to rule out those circumstances.

Autumn11
Autumn11
in reply to Gambit62

Thank you very much. I will definitely start there.

Sita505USA
Sita505USA
in reply to Autumn11

Hi there

I am in the US. I asked a primary care doctor for the mma, it didn’t show anything, but I think these tests are unreliable. I have never used a private lab, but have heard that other people do and pay out of pocket. I guess I would recommend calling your primary’s office to ask for this testing. As a social worker, I have found that the squeaky wheel gets the grease, so I would say, be persistent; I am well acquainted with having to wait for health care. Our health care system here in the US is broken! Best to you, keep on keeping on! Sita

Autumn11
Autumn11
in reply to Sita505USA

Yes it is. Thank you for your response its greatly appreciated. I'm definitely going to fight for my health. I have 2 beautiful daughters to fight for too. I'm so thankful for all the responses. And happy I found this forum.

Try to get your doctor to get you a Homocysteine Test , which will indicate if you are absorbing b12 . It is obtainable at Yorktest.com , which seems to be the only private laboratory which offers the test using a finger-prick blood sample ( other laboratories need a venous blood sample taken at a laboratory) It costs £149.00 .

Autumn11
Autumn11
in reply to wedgewood

Ok I will do, as soon as I get some kind of health care. Thank you

Thank you for your replies!

I'm sorry that most people who reply here are in the UK so possibly not best placed to advise you where to get your tests. Maybe you could start another post entitled "Where to get MMA and homocysteine tests in the USA" or possibly even better just "Where to get tests in the USA" and hope that it catches the eye of someone more able to help.

I definitely think that your liver problem needs addressing, as you are waiting to do, and this could easily give you some answers. This alone will give you some pretty horrible symptoms, many of which are similar to those of B12d.

One question that does come to mind is have you had your folate levels checked? If you are short of folate you won't process your B12 properly so your B12 levels can become elevated and gives very similar symptoms to B12d.

If you are able to get tests then I suggest you get your iron especially and possibly vitamin D checked too. Without enough iron (and vitamin D) you will feel similarly dreadful and low iron levels particularly can reduce the amount of B12 you use because your red blood cell production becomes limited.

I can understand that you feel pretty dreadful and need answers.

I wish you all the best and good luck with it and in the meantime I will keep thinking.

That is a great idea for my next post! Thank you. No I haven't checked my folate. Something to consider..thank you for all the good advice. I will do as much of it as I can.

Good luck! x

In the USA, LifeExtension offers a urine MMA test for about $50. They also offer a B12 status panel for about $70 (blood test) which includes B12, Folate and MMA.

lifeextension.com/search#q=...]

I have used their services to test for my Vitamin D level as my insurance won't cover it and my local lab charges over $200 more than Life Extension. My parents had their MMA levels checked through their services. Life Extension works with local labs who provide either the blood draw or urine collection cup and processing then get back to you with the results via email.

Best to you!

I was actually considering life extension, but I wasn't sure if it was legit. Glad I found this forum, now I'm definitely trying it out. Who will be checking our test results? Will it be doctors?

As with any lab, the tests are performed by lab technicians and their sophisticated equipment. Life Extension will give you the results as well as the normal range to compare your actual number(s) against. They do not give medical advice. My GP approved of them for my vitamin D testing. She said that the typical labs (Quest, etc.) that work with most doctors and hospitals mark up the prices of tests as they expect the insurance companies to approve lower amounts. This leaves those of us without coverage footing the very high cost.

Once I received the D3 results from Life Extension, I gave the results to my GP for review and discussion. She was satisfied with their performance, I was satisfied with their prices.

I have the same problem and am in US. Post back if you find help. 5 years ago I lost control of my body (like a seizure but I’m conscious) and lost my speech. ER saw nothing. Went on like that for a year then someone said I needed vitamin b. Took it and it stopped. 4 years later it started happening again. ER saw nothing. My B-12 was over 1,000, folate 20. So they disregard that as a problem. MRIs and autoimmune tests. Nothing. But the symptoms are same as when the vitamins worked 4 yrs ago. I read blood tests don’t check active b-12 (attached to TC and used for cells) and it’s only like 10% of the B-12 in your blood stream. More reading shows even if they do all the tests and see nothing there is Still a good percentage of people with deficiency symptoms so they just inject them and if it stops the symptoms they just go with it as unexplained.

Other factors such as Folate and Ferritin levels are very important as they work together with B12 issues and also good to have Vitamin D levels checked.

Apart from that I’m sure others here will give you more specific and better advice.

I’ve been dealing with it for the last 4 years and couldn’t have done it without the wonderful people on this site.

Wishing you well.

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