Advise b12

[sonnyjoe1]

Hi guys so advise going to see a haematologist tomorrow with my daughter we r in Uk, my daughter has been having injections for the last two years every 6 weeks first of all seemed to be good but the last 6 months she suffering realy bad breathing lethargic no energy faint doctors baffled she takes folic acid eats drinks things with potassium been tested for precious anemia and thyroid by Gp but he says it coming back ok, so now to see haematologist what questions and tests do I ask him for my daughter 27 and it’s affecting her work .

[fbirder]

Do the symptoms seem to get worse just before an injection is due? If so it might be worth asking for more frequent jabs.

[sonnyjoe1 in reply to fbirder]

No she had one a week ago and went down hill after 6 days had to go AE has she was so weak x

[Ritchie1268]

There are a lot of us who have to inject ourselves more frequently. After keeping a diary I have to inject currently every other day, if I don't symptoms return.

I've tried to spread Injections out longer, but my partner now knows if I forget & tells me to get my B12 injection & soon sees the improvement.

Hope Haemotologist goes well.

[sonnyjoe1 in reply to Ritchie1268]

Yes I think she will need to self inject. Thank you

[Scothyroidy]

I inject twice a week or once every third day if I feel I need it . Maybe your daughter needs more b12? Worth a trial imo.

[sonnyjoe1 in reply to Scothyroidy]

Yes I think the same x

[Reemfali in reply to sonnyjoe1]

Check ferritin levels

[esteloca]

Yes she needs weekly injections at the very least! I was the same way on monthly and by the 6th day I was in terrible shape so I started asking for extra injections every time I went to the doctor. Now I self inject weekly and get an extra jab every time I'm in the office.

I still need more sometimes so I do what I can.

I was in my 20s when I got sick and they told me I was too young to have the symptoms I described! I was 36 and almost bedridden before I figured it out so it's good she's caught it "early".

Still makes me so mad when someone says I'm too young to be this sick.

Best of luck to you both!

[Gunj_redjem in reply to esteloca]

Did u detect ur deficiency after 16yrs?how far have u improved?is ur brain damage reversed?if yes in how much time?

[esteloca in reply to Gunj_redjem]

To clarify, I also have Celiac disease and chronic Iron deficiency. After 16 yrs of seeing several different doctors and 2 hematologists, I was diagnosed with pernicious anemia and celiac sprue. So I went more than 16 years without treatment.

I've been on injections for close to 2 yrs. The weakness and shortness of breath is so much better now with frequent injections - they did say some of the damage was permanent.

I started to get better the 1st few months but then started to get bad again so I kept complaining and describing symptoms at every visit. I went from weekly to monthly then to biweekly after complaining about symptoms and finally now I'm injecting every week sometimes twice a week.

Sorry so long, just trying to answer your questions.

I would keep trying to get more frequent injections. Tell them about this forum and any advice you get. And when you see the hematologist, just give her complete history with all of her symptoms and again, refer to this forum and any suggestions you get here.

Most importantly, don't get discouraged! For awhile it may seem like she'll never get better or doctors aren't listening, she may get depressed but it's so important to remember it'll be like that for a little while. You have to keep complaining and maybe see different doctors. I think she will get better as soon as she starts more frequent injections.

Hope this makes sense! Sometimes I don't think clearly.

[Gunj_redjem in reply to esteloca]

Ur levels must b high then...actually mine are and I’m concerned about levels as I need to carry a child and with higher levels I cannot

[Ghound in reply to Gunj_redjem]

Many others have already stated, and I have to agree with them, that there is no sound evidence that high B12 levels will cause harm in pregnancy, especially regarding autism, which is what appears to worry you most.

Deficiency would surely be more dangerous for both mother & baby.

I'm sorry, I don't mean to sound unkind, as having had difficult pregnancies and childbirth, I understand what a worrying, stressful time it can be.

However, I do wonder what reassurance you hope to gain from this forum, when you seem unwilling to trust the views & advice of people here who have expert experience.

Maybe you are a person who just needs time before you have the confidence to trust, but I hope you will listen ...

[Gunj_redjem in reply to Ghound]

Actually it’s not me it’s science that shows higher the mothers level higher the risk of autism child..in fact my neuro agreed

[Cherylclaire Forum Support in reply to Gunj_redjem]

There is no research that I'm aware of that can prove high B12 alone to be the cause of any condition. I would like to see any research paper that you or your neurologist have read on this subject, particularly in relation to autism.

There appears to be some link however between B12 deficiency and autism. All of my sisters' children are on the autism spectrum, although only I have B12 deficiency (and no children). An Inherited Metabolic Diseases consultant is investigating my DNA .

This forum does not have medical experts available and all advice and support here is based on personal opinion and experiences. If you are worried about the effect of high B12 while being pregnant, you need to discuss your fears and concerns with your GP or a consultant.

[helvella in reply to Cherylclaire]

I suspect this paper has caused some questioning:

Maternal Multivitamin Intake, Plasma Folate and Vitamin B12 Levels and Autism Spectrum Disorder Risk in Offspring.

ncbi.nlm.nih.gov/pubmed/289...

[Cherylclaire Forum Support in reply to helvella]

Feel free to correct me if I am wrong here, this is an important issue after all, but it does seem to me that there is something amiss in the research highlighted in the B12 table used, in that given a starting point of 200pmol/L and a cut-off point of 700pmol/L, all of the participants had "normal" levels of B12 in their bloodstreams- in other words, their b12 levels were reflective of that of a general healthy (non-supplementing) population (?)

I know that what is considered as normal range can vary from lab to lab, but I still think this is a question worth raising:

If these subjects were tested for serum B12 by their own GP, would not all samples be pronounced "normal- no action" ?

[Gunj_redjem in reply to Cherylclaire]

Ya I did n my neuro told me to lower my levels by leaving the treatment for sometime

[Ghound in reply to Gunj_redjem]

B12 deficiency is a complicated subject & more research is required. My knowledge is limited to what I've learned on this forum.

However I do have a son who has an Autistic Spectrum Disorder,

& I suspect I could have been B12 deficient for far longer than I originally thought.

I also think that you have to be as well as possible to embark on pregnancy.

I can appreciate there is a difficult dilemma for you if you believe that the levels needed in order to keep you healthy may perhaps be harmful to a developing foetus.

I wish you well