High serum B12 reading: My doctor has... - Pernicious Anaemi...

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High serum B12 reading

BLVD profile image
BLVD
15 Replies

My doctor has talked to his friend the neurologist about my high serum reading of 1207. I am 66, a vegan, take h2 blockers and two years ago had a large dose of nitrous oxide for a broken arm manipulation. A short while after that I developed symptoms but put it down to the painful radius break that developed complications. Later I suspected B12 d and started taking cyanocobalamin but it didn't alleviate the symptoms although my reading had gone up to 500! I read up on it and decided my cells weren't absorbing the B12. My doc disagreed because my figures had gone UP again and my folate was high. I also had macrocytosis. He still did nothing! So I started taking methylcobalamin which I've taken now for 7 days. The shaking has stopped. However, my depression was worse before taking them so I had given in and started anti depressants also! My doc rang me and said the only reason I could have a high reading and it not be utilised is if I have a missing enzyme...very rare...nothing can be done about that. The active test is not reliable he said and that is why it isn't done widely on the NHS. He just hopes the antidepressants and the B12 sublinguals will do the trick. So do I.

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BLVD
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15 Replies
Poppet11 profile image
Poppet11

Couldn't you have had a high reading because you had been taking 500mcg of cyanocobalamin a day?

Recent research showed that 5mcg of b12 (I don't know what kind) would push serum b12 levels up by 50ng over 30 days. It still didn't reduce the MMA results or the homocysteine levels.

If you had macrocytosis then the doctor should be investigating the reason for that.

Poppet11 profile image
Poppet11

Not that I want, or am able, to get into it. But there is research which showed some people with 'naturally' high b12 levels had more cellular deficiency than those with low.

Doesn't that one throw a spanner in the works! As if this illness wasn't complex enough.

Gambit62 profile image
Gambit62Administrator

Really sorry to hear that you are caught up in this farce.

Ironic that the GP is going on about active B12 being unrealiable when whole serum B12 is probably even less reliable as it doesn't distinguish the different types of B12. From what I read the best measure is a mixture of Serum B12, MMA and Homocysteine - the latter two are by-products that build up when the body isn't metabolising B12 properly and isn't able to break down some nasties properly as a result. Think MMA is a urine test rather than a blood test.

As Poppet says the high B12 could just be the fact that your body is being flooded with B12 - hate to think what my levels must be like given the rate at which I supplement but if I don't then I just find myself tired, depressed, in pain and with no balance.

Sounds as if the methylcobalamin is working for you - it is a form that is much closer to the form that your body needs to metabolise.

Are you getting plenty of the other B vitamins - B9, B12 and B6 seem to work together and you need B9 (folate) to metabolise B12 and the other way round - notice you mention that your folate levels are high.

Stick with it.

I suffered from depression for years and was quite depressed when I got fed up with doc not listening to me about B12 and decided to supplement for myself. Within 2 weeks I went from scarcely being able to walk to being quite happy perching at the top of a ladder pruning my grape-vine ... and was surprised when the depression actually disappeared - think that was one of the first symptoms for me - and probably a good 10+ years before other things started to get bad.

It ain't you that is crazy it's the medics :)

Gambit62 profile image
Gambit62Administrator in reply to Gambit62

H2 blockers are listed as one of the medications that can interfere with the uptake of B12, because they lower stomach acid levels so that could be part of the problem. May be worth giving it a rest for a while and see if that improves things at all - though I suspect that the methylcobalamin is probably what you need most.

BLVD profile image
BLVD in reply to Gambit62

Just seen this Gambit. I can't give H2 blockers a rest as I have Barrett's and so my Osophagus gets really sore if the acid is allowed to seep up and aggravate it. When I get it fixed I'll be ok. Thank you x

ukangell profile image
ukangell

Your dr is wrong. I can't believe the rubbish these so called educated drs do and say. 1200 isn't too high. There's no top limit on B12 (WHO). It's not toxic or poisonous. People can feel that some symptoms get worse once they substitute as their body is doing urgent repairs in the damage that has occurred. You need more B12 and will find that your symptoms will calm down and get better.

There's many many people who add to their B12 injections from the drs. I self inject between my 12 weekly drs injection.

The way if healing cyanide poisoning is a transfusion of B12!

The active b12 is more reliable than the serum test. The active shows how much B12 in your body is available for use whereas serum B12 shoes a total amount in your body which contains aprox 80% of what the body can't use.

Lack of B12 can cause depression. Gas and air depletes B12, is an antagonist as is the pump that you use.

High folate levels can mask B12 deficiency but funnily enough you need folate and iron to transport B12 into your cells!

Marz profile image
Marz

Just wondered how your VitD levels are ? As you probably know Vit D is more than a vitamin and is a steroidal pre-hormone needed in every cell of the body. There seems to be a world wide problem with D deficiency and being low can be one of the causes of low mood. Hubby and I live in Crete and after many years here we were both diagnosed insufficient...so take capsules :-)

Deficiencies often come together - so have a peep at....

vitamindcouncil.org It is an American site - if you click onto Health Conditions at the Top of the page you will read of all the conditions connected by Low D - accompanied by relevant articles....

Just maybe of help...

BLVD profile image
BLVD in reply to Marz

Vit D is fine I am told, thank you for your suggestion Marz x

Marz profile image
Marz in reply to BLVD

Best to have a copy of your D result - maybe it is not OPTIMAL :-) - and that is where we need to be. As you have stomach issues I wonder if you have had your thyroid tested - and not just the TSH - also the FT4 and FT3 - also Anti-bodies. Often when underactive - the stomach acid is low and as proteins cannot be digested adequately - they remain in the stomach and ferment. This then becomes the acid you experience. It is a very common mistake made by Docs.

Have a look at Thyroid UK on HU and type Stomach Acid into the Search Box and see what pops up. It is a very common problem and the treatment is harsh and damaging. There are gentler options - Betaine HCL - being just one....

BLVD profile image
BLVD in reply to Marz

Marz, thank you, you are so kind. My thyroid is ok too, I've had all the tests and have to believe the results...except for serum B12! My consultant says the reflux is because of the hiatus hernia. I have done the lemon juice and bicarb test for low stomach acid and it seems it isn't low, I've had the camera tests and biopsy so surely they would have diagnosed low stomach acid if it was that. It will be interesting to see if, after my Nisson op, my reflux is cured! Barrett's Osophagus is the reason he's operating not the reflux. Even though it's a low risk of turning cancerous they still take it seriously but I know of two people who have it and are on PPIs for life! So I consider myself lucky! :) those people are at risk of a B12 d and other deficiences and side effects big time!

Marz profile image
Marz in reply to BLVD

If you have copies of the thyroid results you can send me a PM and I ill have a look at them for you. TSH needs to be 2 or below. FT4 needs to be in the upper quarter of the range and with the FT3 - well that needs to be in the upper third. Anti-bodies - if they are present then you have Hashimotos. Just interested really - having spent 3 years on the Thyroid forum I have learnt loads. You can check my profile too to see my journey by clicking onto my name. Sadly Docs know VERY little about thyroid and how it affects every cell in the body....there are over 300 conditions linked to low thyroid hormones.

Do so hope the op works for you. PPI's for life - gosh that sounds awful. I should be on some ghastly drugs for my Crohns which I have had for over 40 years - guess what - I don't take anything. Just weekly B12 injections since this Easter and lots of supplements and T3.

Wishing you well.....and soon....

BLVD profile image
BLVD in reply to Marz

Thank you so much Marz. I don't have the results as I didn't think to ask and they were a while ago. I know now I should ask for a printout...will do in future. I am pinning my hopes on the operation :)

Marz profile image
Marz in reply to BLVD

I have had 13 operations - so know how you are feeling...take good care :-)

EiCa profile image
EiCa in reply to BLVD

I have Barrett's esophagus and have controlled it completely by immediately cutting out acidic/spicy food as soon as I was diagnosed. No fun at all...no coffee, caffeiene, alcohol, many spices, tomatoes, peppers, citrus....I have had two follow-up endoscopies in five years since my diagnosis and there has been no change in the state of my esophagus. I never took a PPI after my diagnosis though I had taken them for quite a while a couple decades earlier. It is possible, but not a guarantee, to have Barrett's and have it not progress without PPI's, though the doctors do not like it at all that I am not taking them. I have just had to use a lot of self-discipline.

BLVD profile image
BLVD

Also, I have to take H2 blockers as I have a hiatus hernia and Barrett's. I was due an operation so I didn't have to take them anymore and also to protect my Osophagus but the B12 d symptoms (mainly depression) prevented me having it. I cancelled twice, once last week. I just didn't feel able to go through with it. Hopefully next time I will when the drugs and/or methylc. have kicked in!

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