Continue supplementing for next blood tests?

I’ve arranged blood tests to see where I am with my levels now.Its been around 5 months since I first started so I’m thinking because I want to see if my supplements have made a difference/ improvement since my last tests that I should just continue to inject and supplement like I’ve been doing ,opinions appreciated please! X

[JanD236]

As I understand it, if you’ve been injecting, a B12 blood test result will be fairly meaningless. All it is likely to show is that your B12 is above range and indeed possibly above the maximum level that the lab tests.

A better gauge of whether the injections have made a difference/improvement is likely to be by monitoring your symptoms.

[Hidden in reply to JanD236]

Hi JanD236.

Yes I understand that your right but as I’m functional b12 deficient I want to see what the active b12 is now it’s not a serum test as you say that’ll be sky high as Ive been injecting every other day and also because my folate has been dropping at each blood test and my ferritin very high I want to see if Injecting b12 has made any difference to those.

I’m so tired and achy I’m dying to see what’s happening

Thank you for replying as always .

[fbirder in reply to Hidden]

I'd be really surprised if your Active B12 isn't sky high.

Injecting B12 shouldn't affect your folate levels, unless you were folate trapped. That will make your folate very high before B12 supplements. Folate levels then drop back to normal when you start supplementing with B12. I cannot think of any way that B12 supplements can reduce folate levels below normal.

Do you take folate supplements? If not then I would start taking 400 mcg a day.

[Hidden in reply to fbirder]

Hi fbirder thank you for replying.

I think this is what I’m hoping for then at least I know something is getting through,I try and read as much as I can this has been a huge learning curve for me and I struggle to retain stuff although that has improved recently with supplements.

My folate had dropped from 8 to 2 over this last year of blood tests and my ferritin was getting higher at every test,last test had shot up to 499 from 298 previously but gps had no interest.Ive seen numerous consultants but i get no where really,most of them have said my bloods were good??

I supplement with solgar (as metafolin)folate 400 as you say so I’ll be very keen to see If that’s changed these last few months

When I was on the thyroid forum I was advised to optimise my b12 folate d3/k2 and because my mma test result was questionable advised to come to p.a.s forum for advice.

I’m trying my best to get well ,I’m not looking for perfection,I just want to be able to function without continually having accidents and head injuries.

I’m hoping that the tests I get done come back with a bit of encouragement for me and I’m just wondering as usual if I’m on the right track,the last private endo asked gp for a load Of tests to be done after lockdown but that hasn’t progressed any so I’m hoping I’ll have some decent ammo to go back with after this barrage of blood tests.

Should I stay as I am with the supplements just now then after test results I can reassess.?

Many thanks sorry to be so boring.x

[fbirder in reply to Hidden]

If you want to see if the supplements are improving your test results then you need to keep taking them.

I would stick with the Metfolin, no matter what the lab results say (unless your folate is low, then I might consider upping the amount). It's good stuff, I'm sure it's helping my dog's joint problem.

[Hidden in reply to fbirder]

My apologies I missed your post.good advice thank you I’ll do that.

Many thanks

[HopetoB12better]

Have your symptoms improved? How often are u injecting? Best wishes ❤️

[Hidden in reply to HopetoB12better]

Hi HopetoB12better.Welcome.

I’d say overall there have been some good improvements,at least I can go out a walk now without staggering or falling,I had such a bad head injury previously it put the fear of god into me and has taken years to make any kind of recovery I was so damaged so that’s a huge blessing.

I’ve always had a great brain and now I just feel stupid most of the time because I can’t retain or work out things like I used to be able to.

The forum and its members are a blessing because now I have somene to bounce things off even though it may be right under my nose I don’t always see it.

I’d say keep plodding away with your treatment you’ll have good and bad days like everyone and the lovely people here do say it can get worse while it’s doing it’s healing so I guess the secret is patience but I tend to forget that too lol.x

[HopetoB12better in reply to Hidden]

Thanks for your reply. The brain fog has been awful too - like I was forgetting things at work that I have known for years. Questioning emails I was composing - rereading words and questioning everything cuz I was feeling literally stupid! Add in the pain and fatigue and “floppy legs” - I was sure I was dying. And apparently if left untreated I would be!!!

[Hidden in reply to HopetoB12better]

It’s awful isn’t it I started off my d3 was rock bottom and I had treatment for it and it quickly climbed but I still wasn’t right and did the long trail of various consultants,some ok,most rotten,I’ve had brain scans mri scans ultra sounds last lot of tests were haemotoligist to see if they could find out why I had raised lymph nodes near the caecum ,they did two scans over a year to check the growth rate and he was happy he said no significant change ,they Blood tested all sorts but not b12 so that’s why these forums and members are such a godsend the feedback has encouraged me to look in other directions and given me the confidence to keep trying to get myself well.

I had loading doses of 6 nject ions then I started self injecting after a lot of help here but right now I’ve decided after about 22 injections to reduce from every Other day To twice a week Wednesday and Sunday.so far I’m not really feeling any different but it’s early days and I may have to increase injections again I’m not sure yet.

[Hidden in reply to HopetoB12better]

I’ve suffered with HPylori recurring Over the years so I’m sure that’s what’s behind all this but I know I was anemic as a kid as I’d to go to clinic every s often for iron pills I was tiny and so thin and allergic to everything.

[HopetoB12better in reply to Hidden]

I was diagnosed with SIBO (small intestinal bacteria overgrowth) and I took probiotics for 2 months and I think I fixed that problem but wonder if that is the cause of lacking vitb12 because I read that the bacteria takes all of it before your body can get any. Geeze. What a complicated machine our bodies are!!!!

[Hidden in reply to HopetoB12better]

Your probably correct maybe it’s something you can research some more.

At least now you are here you’ll get the help and advice you need.X

[Cherylclaire Forum Support]

My MMA tests all showed my MMA as "raised" - 350-400 nmol/L (range: 0-280 nmol/L) - when B12 injections raised my serum B12 from under 200 ng/L to over 2,000 ng/L but symptoms worsened. My GP believed me to have functional B12 deficiency which was confirmed by the lab doing blood tests, but subsequent consultants finally decided this level to be "my normal" MMA level. Generally, there is no real concern unless MMA levels very much higher than this, I was told.

Raised MMA can be due to renal problems so these need ruling out at the same time, and another reason can be small intestine bacterial overgrowth (SIBO) - which was mentioned in one of your replies ( HopetoB12better ) . This can be ruled in/out by a specialist breath test reading. My results were "inconclusive" - so I was put on antibiotics (Doxycycline) in case, which caused a reaction: bad headache and vertigo. This also happened with a different course of antibiotics (Metronidazole), given when I had gum infection.

SIBO can be difficult to get rid of completely, and can need several courses of varying antibiotics, as SIBO can become immune to one type ! Along with robbing you of B12, they also like other vitamins, particularly fat-soluble ones. Probiotics might help.

Helicobacter pylori can cause gastric atrophy (which can prevent B12 absorption) and is usually treated by proton pump inhibitors, which can over time deplete B12.

I am aware that this probably doesn't sound particularly positive, but worth looking into for elimination purposes.

I have also decided to treat my condition with frequent injections -as the only thing that seems to work at all. Although I still have symptoms, they are mostly reduced in severity and frequency, some very much so, some are now rare. A few stubborn symptoms remain as was, and my goal is to have a completely symptom-free day. I am doing so well that I have reduced my injections from one every other day to one every third day. I have tried reducing further with poor results, but will try again. I also had low folate, ferritin which took a while to raise and stabilise, D3 now on prescription because I have osteoporosis of the spine.

Are you UK-based ?

What reason have medical profession given you for high ferritin levels ? Not usually the way this goes.

Also wondered how functional B12 deficiency was arrived at by the medical profession in your case, and how the treatment might differ from B12 deficiency in their view ?

I was told by a consultant that the advised treatment, on discovery of an inherited condition preventing B12 function at cell level, is 2 injections a week. Unfortunately, after a long wait, my own DNA did not reveal anything.

Turner and Talbot wrote a research paper in 2009, published in Practical Neurology, about functional B12 deficiency. A bit vague in conclusion but might help to read it.

I first went to the GP in January 2015.

[Hidden in reply to Cherylclaire]

Hi sorry about delay it’s been a hectic day for me but in a good way.

Thank you for your comments and Yes I’ve had HPylori a number of times over the last 15 years and it’s very nasty,last bout took me months to get rid of and numerous antibiotics,it was such a challenge as I’d been having severe reactions to antibiotics for a while before my treatment but we got there in the end up,the breath test confirmed it was dormant the treatments had worked.ve never taken ppis long term only for the two weeks duration Of treatment and I tailed them off gradually over week three so I didn’t get any rebound symptoms .

I’m not sure about the reasoning behind the endos diagnosis of functional b12 deficiency,I gave him all my test results and he wrote to gp with his recommendations and I was Pleased he’d complied because he was a new gp ,new practice and I’d never dealt with them I only spoke to him on the phone consult and he was very nice.He hasn’t followed up on the other recommendations from the endo but I’ll chase that up after I have these next sets of private bloods done.

Yes I’m U.K. based northants,and none of the numerous consultants I’ve seen have shown any interest in the high ferritin,I’m dying to get these new blood tests done to see If any changes.ill just have to be patient now for a couple of weeks I guess.

Thank you for replying take care x

[Cherylclaire Forum Support in reply to Hidden]

Yes, you too. You've got a lot to handle right now. Keep in touch and take it easy.

[Hidden in reply to Cherylclaire]

👍