Help? My B12 272 folate 8.8

[Yoshi12]

Good afternoon

I would like some advice please.

Last June 2016 my vitamin b12 levels were low of 156 also my folate was low (unsure on the number) i had 2 weeks of b12 injections every other day and 5mg folic acid prescribed for a few months.

I had another blood test after for coeliac and intrinsic factor which were normal.

They said originally i would need b12 injections every 3 months after that but in Aug 2016 my b12 levels were 700 and they said i no longer needed any treatment and stopped any future b12 injections and my folic acid. My next b12 would have been october 2016.

I felt better (although never 100%) till end of october. I went back to gp and next blood tests showed b12 430, folate 15.4 and vit d 56. No further action.

Still feeling unwell I went back in Jan 2017 b12 was 377.

Again in March 2017 they only retested the vitamin d which came back at 24 and i was prescribed supplements for a month. I was now referred to the chronic fatigue service's for an assessment as my levels were normal for b12 and the gp said although there's an obvious decline in b12 levels this did not matter.

I had my CFS assessment tuesday and she said i fit the criteria but she wanted the b12 and vit D retested.

In the last week the shortness of breath has got worse on exertion and standing, weakness and fatigue with muscle twitching in my lower legs and some pins and needles to my feet. My b12 is now 277 and my folate is 8.8 and gp says again no further action.

I have other symptoms too of more emotional, irritable, poor sleep, poor concentration, headaches plus more. I felt like i did last year when i was 'deficient'.

Im trying to hold down a full time job but feel im getting no where with my gp. Im not vegan or vegetarian and feel my diet is sufficient and been taking a multivitamin daily since July 2016.

Any help or recommendation to what to do?

Thanks jennie

[pvanderaa]

You need more frequent injections. Once you are on then you should be >1500. Forget any further blood test and treat by the symptoms.

You cannot overdose or be too high for B12.

Your GP is ill informed ( can't say the word I'm really thinking).

[Yoshi12 in reply to pvanderaa]

Thank you. I thought that may have been the case. Im just made to feel im making it all up. Xx

[pvanderaa in reply to Yoshi12]

Are you keeping a logbook and scoring the severity of your symptoms?

Also, record your food and drink as some symptoms arise 3 to 48 hours after eating something that your body reacts. This delay is because the gut is involved and the logbook supports any short term memory loss about what you ate.

Talk to your GP about treating by symptoms and ask for suggestions as you need to get them past the "I've got a hypochondriac on my hands stage".

It took me quite a while to sort out all my symptoms. I've used the logbook and treat by symptoms argument successfully with my GP in the U.K. And my GP here is the USA after i moved.

[Yoshi12 in reply to pvanderaa]

Thank you. Ill give the log book ago. Fed up of feeling this way and effecting my work and social life. Thanks for you help xx

[Aidan_ in reply to Yoshi12]

Sorry, u r going through this complete Torture Jennie I am going through the same I am in the UK as well in Southampton...You mentioned you blood work levels B12 were these done in UK on NHS or a Private lab here I

had mine done here twice but they said Normal I now feel like self-injecting & going to 1500 I am really fed up I brought my D level up to 900 which was high it did help though but new then it was not my issue I feel it is B12 so

will try treating myself instead I wish you wellness I hope you feel 100% soon if there is ever anything I can do just let me know hugs, Aidan

[Aidan_ in reply to pvanderaa]

You mention 1500 is this the Range ng/L? The reason I am asking is trying to see if same as I am in the UK. Lots of questions this is all new to me

[pvanderaa in reply to Aidan_]

Either ng/L or pg/ml. They are the same.

[Aidan_ in reply to pvanderaa]

thanks lots appreciated so now my goal will be 1500 ng/L

[pvanderaa in reply to Aidan_]

Once I started on injections, it seems this is where the test results always came back.

Also, folic acid is needed to balance the B12. Up to 5 mg max. For a while I couldn't handle more than 3. So I used the logbook to help sort out and after a recommendation I spilt the 6x 800 mcg into 3 different times of the day.

[Gambit62 Administrator]

are you based in the UK.

If so suggest that you join the PAS and contact them.

pernicious-anaemia-society....

In the mean time you could write to your doctor pointing out that they are not treating you in accordance with current standards - reference to BCSH (British College for Standards in Haematology) and also NICE guidelines which both reference that testing is not required after treatment starts unless there is reason to suspect that B12 treatment is not being followed.

onlinelibrary.wiley.com/doi...

cks.nice.org.uk/anaemia-b12...

Basically the normal range does not apply after B12 treatment has started - and the serum B12 test is only significant if it is coming back low showing that you are someone who gets rid of excess B12 in the blood a lot faster than the average. Serum B12 is only measuring part of the metabolism of B12 and having high serum B12 can cause problems with the processes that transfer B12 from blood to cells meaning that on average people being treated for B12 deficiency seem to need much higher levels of B12 in their blood than the normal population.

You could also point your GP at information on the PAS website available to medical professionals to help them understand PA in particular a lot better

pernicious-anaemia-society....

[Yoshi12 in reply to Gambit62]

Thank you for your reply. Yes i am based in the UK.

I have read over the information you have provided and its helpful to have some more robust websites to use to support my case.

Im going back to my GP Wednesday and I will contact the PAS as well. Ill let you know how i get on.

Thank you

[CH52]

Wow Jennie, this is what I'm starting to experience also but my injections and iron infusion are way closer than your schedule. It started again the last week after my initial loading doses which shocked me. Fatigue, numbness and leg and arm tremors along with headaches all come back especially after I have a few normal days of activity! I go back to my oncologist next week and have it at top of my list to discuss with him. I will be armed with a lot more info to discuss my treatment since I learned so much more about PA from this forum. Good luck to you and hope you take up with your doctor. Sometimes you have to be your own advocate!

[Yoshi12 in reply to CH52]

Thank you.

How often do you have your injections?

I am getting muscle twitching in the last few days mainly to my calf muscles but to my arms as well is that what you mean by tremours.

Im also getting pain to my lower back hips and knees. Im hoping to get some where with the GP Wednesday.

Thanks for yours reply

[CH52 in reply to Yoshi12]

Hi. I go every 2 weeks for B-12 injections and Iron infusions. My tremors are like a weakness or shakiness in my legs turning to jelly kind of feeling. I also have arthritis in my hips and hands which is yet another autoimmune disease. I hope you get some answers and help and don't let the doctor push you off. I ask tons of questions in trying to understand both my symptoms and my treatment. Right now I'm trying to understand all the different blood work tests and what they mean. I'm learning more about our body and how it functions then I ever knew before. I'm in the U.S. and I never paid attention to all this medical jargon before. A lot of the folks who write in are way more knowledgeable than I can ever hope to be! Again hang in there and best of luck to you.