Top of Range Active B12

[FancyPants54]

Hello

I had a test at end of April and my results were >150 pmol/L for Active B12. The Medichecks doctor wrote that this was not an issue, but that my results meant that my B12 was probably not causing my symptoms.

Is it possible to have pernicious anaemia, low intrinsic levels, with high active B12?

I have terrible foot and lower leg neuropathy that has ruined my life so I have to be sure I'm safe in ruling B12 out. I'm also hypothyroid and have struggled for years with that medication for that. Nothing helps me.

I have had to supplement long and hard to get it where it is this time. It's normally been much lower. I have not felt any benefit from all the B12 supplements. I currently use B12 drops. I have also used B12 oil that I applied to the skin as well. In fact this test was based on the transdermal oil usage. I switched to drops afterwards to see how they worked.

[charks]

You are taking supplements which will have raised your B12 levels so tests are useless.

[FancyPants54 in reply to charks]

Yes, I have supplemented for years because it's never been good enough. I wanted it higher than 600 but it was consistently below that.

[Agapanthus1]

Have you considered injecting to see whether that helps? If you have PA, you need to inject rather than other routes. As Charks says, any b12 supplements will render tests inaccurate, so it’s more important how you feel & you definitely have what could be b12 deficiency symptoms!

I have PA & Hashimoto’s & have just re started self injecting every other day as my symptoms were returning big time after recent illnesses.

Edited by admin

[FancyPants54 in reply to Agapanthus1]

Thanks. I admit I don't know where to start with this. I know everything about hypothyroidism and it's treatment. But I don't have the energy to start again with PA and all that covers. I thought people with PA rated B12 that doesn't go through the stomach, hence the transdermal Australian oil first and now the B12 drops.

How is it best to test for PA given I have been supplementing B12 for years, one way or another. Is it Intrinsic factor I need to be testing for?

My GP won't give me injections unless I can prove I have PA, and then they won't be often enough I guess. And much as I've tried looking, I can't work out how we in the UK can successfully buy what we need to self-inject. Would that FB group be able to help with that?

[Agapanthus1 in reply to FancyPants54]

I feel you, having both conditions myself & feel I have paid less attention to the PA despite self injecting! Been really struggling for a few months so have increased my injections.

I think you would have to take massive amounts of b12 any other route & I would worry that I wasn’t getting enough or that it wasn’t being properly absorbed.

There are 2 blood tests you can ask your GP to do, this info will all be in the groups I’ve mentioned. I’m not sure if you have to stop all supplementing prior to these tests but again that info will be in the PA group. It really has excellent files & support.

Wishing you all the best. I hope this is the final piece of the jigsaw for you. 😊

Edited by admin

[charks]

Drops work for me but I dilute them in water before taking them. And I take a massive amount - 15,000 mcg daily. I dilute them because having PA means the B12 has to be absorbed via passive absorption which is very slow so the longer the B12 is in the stomach the more chance some will be absorbed.

[Sleepybunny]

Hi,

If you suspect PA then worth joining PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Some labs suggest leaving at least 48 hours and up to two weeks after a B12 injection before testing IFA (Intrinsic Factor Antibody ).

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

A useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

UK treatment info in book needs updating.

I'm not medically trained.

[Sleepybunny in reply to Sleepybunny]

Links to a forum thread where I left detailed replies with lots of B12 deficiency info.

Some links may have details that could be upsetting.

I suggest taking at least a week to sift through the info so it's not so overwhelming.

healthunlocked.com/pasoc/po...

[FancyPants54 in reply to Sleepybunny]

Oh goodness! I'm sure this is all wonderful info, but as you said, so totally overwhelming. Just looking at the list is enough to panic me. I was up panicking at 3:40 util about 5:30 this morning. Again! I've been through so much. I've lost 10 years of my life to being unwell and I've paid so much money to see so many different specialists and taken all the right thyroid meds and supplements and yet here I am, worse than ever. I have had 3 nasty colds since September, each has left me debilitated for weeks. This one feels like it will be just the same. I have zero energy. But I also have my elderly mum living here for me to help her and she's desperate for a shower and I can't face it, the effort! That's worse than normal. I usually manage to shower her weekly. I'm so fed up of feeling ill and exhausted but getting rubbish sleep now.

I almost never go to the GP about things because I have given up on them. I have atrial fibrillation all the time but the hospital has signed me off the clinic so I don't get to see anyone about that anymore and the GP has been useless on my thyroid. During lockdowns I did get an appointment to talk about the pain in my feet but I saw a locum who was just passing through. He put me on the couch and lifted my legs up in the air and declared me fine. That was that. So I haven't been back.

I have just had an ACTIVE B12 blood test that showed top of range. Could I still have B12 problems with top of range active test results? I thought that serum could not be relied upon but that active could be?

Sorry, this became a bit of a messy brain dump as I am overwhelmed with my life and what's going on.

[Sleepybunny in reply to FancyPants54]

Hi,

I'm sorry to read that you feel panicked.

I've simplified my replies.

I know it's possible to have functional B12 deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

I can relate to some of your feelings.

I lost nearly 20 years of my life because the doctors didn't diagnose B12 deficiency.

[FancyPants54 in reply to Sleepybunny]

It's been suggested below that I visit a clinic and get a B12 shot to see if I feel a difference. I do have a place near to me that I could get that done. They offer B12 Hydroxocobalamin Injection or B12 IV Methylcobalamin. Which would be the best form of B12 if I were to test it this way? I'm assuming I might feel improvement in at least a symptom or 3 even if it's only short lasting? That would give me something to go armed to the GP with.

It's not your fault that I feel panicked. I appreciate all the links and things. It's just so easy to panic when confronted with things you don't know how to resolve. I'm so used to self-treating my hypothyroidism now that doesn't bother me one bit. But the treatments for hypo don't work, have never given me back my energy. And B12 could be the missing link as my other important thyroid vitamins and minerals are at least in the right part of the range if not completely optimal. I have been supplementing them for years as no vitamin level holds for me if I stop. This is why I have been supplementing B12, for thyroid performance. But as it makes no difference what type of thyroid medication I take or how much or how little, I still feel crap, I must look outside of that box now.

[PhilAB]

You need to inject b12 and often (at least every other day - NICE guidelines state neurological damage = EOD) and you clearly have neurological damage.

[FancyPants54]

I have found a clinic near me that does injections or IV. The injections are Hydroxocobalamin and the IV is Methylcobalamin. Do you have any knowledge of which might be best to use for an experiment to see if I feel improvement?

[Adsypadsy in reply to FancyPants54]

Try hydroxocobalamin injection, if you respond well to that injection you can choose to continue your treatment by self injection, as many on this forum have had to do. The hydroxocobalamin ampoules, syringes and needles are relatively inexpensive compared to clinic prices. All in, probably around £1 per jab. If you choose the SI route, all info can be obtained on this forum but it's imperative that your first injection is in a clinical environment due to the rare but possible risk of anaphylaxis.

[FancyPants54 in reply to Adsypadsy]

That's very good advice. I understand now why it is recommended to have the first injection within a medical environment.

[Adsypadsy in reply to FancyPants54]

Hi,Superdrug do B12 jabs for £29, they do list some side effects and recommend calling NHS 111 if you have a reaction to the jab, which suggests, I may be wrong, that they are not geared up to deal with a medical reaction to the jab.

Wherever you choose to go, make sure they have an emergency plan in place BEFORE you get the jab.

I don't want to scare you as it is very rare but better to be safe.

[Litatamon in reply to FancyPants54]

Some people feel no difference between the different forms of b12.

Some of us do. I feel cuckoo for cocoa pops on methylcobalamin.

Since you are in the UK, and it is a shot go for the hydroxocobalamin shot in clinic.

You *might* feel worse at first while your body wakes up, so do not judge right away.

All the best, I have both issues as well - it is so hard to know what is what when you are struggling.

[FancyPants54 in reply to Litatamon]

Ha, ha! I love coco pops! A box sneaked into the shopping is an occasional illicit treat.

[FancyPants54 in reply to Litatamon]

Thank you for the advice.

[DiNL]

hi Fancy Pants, I’m not sure which is the better form of B12. I think it’s a personal thing. I use Hydroxocobalamin and I’m happy on it. But as everyone has said on here once u supplement it is useless to test b12 because it will always be high. Perhaps the injection will suit you better if you have absorption issues within your gut. I hope you feel better soon. The injections at clinics can work out expensive which is why many of us self inject. I’m in The Netherlands and order from Germany too.

[FancyPants54 in reply to DiNL]

Yes they would be expensive long term, but I'm wondering about trying a few initially to see if I feel any better before going through the process of importing stuff for yet another medical condition!

[Gambit62 Administrator]

FancyPants54, do you have a diagnosed B12 absorption problem.

Levels that are consistently around 600 would indicate that you don't. An absorption problem would be associated with falling levels of B12, and not feeling any benefit from B12 supplements may be an indicator that the problem isn't actually related to B12.

In someone without a B12 absorption problem the body will regulate B12 levels at the level that is right for them by storing some excess intake in the liver and then releasing these stores when blood levels fall.

If someone has an absorption problem then they are unable to use these stores efficiently because releasing the stores depends on exactly the same process as is used to absorb dietary B12 and that mechanism isn't working so the stores just pass through the gut.

[MrJustatip]

Hello, I won't get into all the B12 deficiency symptoms, but if you are vitamin B12 deficient, you can't just have a single shot or a few pills or drops of B12 and start feeling REALLY better right away. It takes from 6-12 months to get back to whatever a normal B12 level is. You stated you were tested and your B12 was greater than 150. Was it 151 or 200, 400 or 700? People 60 yrs old and older need their B12 levels 1000 or more. Read the book Could it be B12 by Sally Pacholic. Good luck