Daughters Folate is 4.6 (4.6 - 18.7) Ferritin is 26.9 (5 - 148) B12 152 (191 - 946)

[dwsmith]

Do you think her levels are low, I do but Dr has dismissed them and not offered any treatment?

[Moggie]

This is an absolute disgrace and she needs to either change her doctor (Different doctor in the same surgery) or write to the practise manager asking why she is not be treated for B12 deficiency - yes the others are low and will need to be supplemented but once something is out of range then your daughter has the right to treatment.

Is she the type of person who will stick up for herself? If so I would suggest she go back to her GP, or another one in the practise if she thinks it will help, to ask them for help with these low B12 levels. If they refuse again then I would be writing a letter to the practise manager asking for conformation that they are refusing to treat her B12 deficiency and the reasons behind this decision. This will usually start the ball rolling, with great effect, and she should then get the treatment she deserves.

Her doctor has a duty of care to her and he is obviously not prepared to abide by this and she need to know why.

Have a look at this link.

b12d.org/

It looks like she will have to sort her ferritin level out for herself, if you want any help with this (what supplements to take and how) let me know and I will help. She will also need to sort her folates out.

Moggie x

[shaws Administrator]

I agree completely with Moggie. It is a disgrace.

[Hidden]

Couldn't agree more. As well as Moggie's link, there is the PAS:

pernicious-anaemia-society....

And a Facebook support page set up by a couple of the PAS moderators:

facebook.com/groups/1749289...

And this link is packed with information:

b12deficiency.info/

This page from the link should help:

b12deficiency.info/what-to-...

Try and resist taking any supplements as it is important to get the right diagnosis and treatment, which at those levels is B12 injections, a 5mg folic acid supplement, plus some iron to get ferritin up to about 70 or 80. Her doctor should also run the PA antibody tests, anti intrinsic factor and anti-parietal cells.

H x

[Hidden in reply to Hidden]

Oh, and I would see another doctor, one who is not dangerously negligent.

[Hidden in reply to Hidden]

One more thing. If your daughter has PA, there is a strong chance that you have it too, so see if you can get yourself tested as well.

[humanbean]

I can't help with the folate and B12, but the ferritin can be self-treated if necessary, and it doesn't have to be very expensive.

Go to a Lloyds pharmacy and ask for a box of 84 tablets of "ferrous fumarate 210mg" - that is enough for three per day for 28 days. One box costs just over £4. Boots the chemist insist on a prescription, but Lloyds and some independent pharmacists don't. Spread the doses out throughout the day, but take them at least four hours separate from thyroid medications (if your daughter is on any). With each iron pill take 500 - 1000mg of Vitamin C. It is a good idea to take the iron and vitamin C with or after food. This may reduce absorption of the pills themselves a little bit, but it also helps to reduce stomach irritation. The other thing is, the iron may cause constipation, but the vitamin C does the opposite - so hopefully it will not be too much of an issue. Vitamin C aids absorption of iron by the way. I learned about ferrous fumarate after getting prescribed the dose I have described . I discovered they could be bought without a prescription and started treating myself. So much easier than having to beg all the time! I got my ferritin up to close to the optimal range (70 - 90) in about 5 months or so.

Hopefully your daughter will start to feel a lot better once she gets all her deficiencies and low vits/minerals fixed. Once she starts to feel a bit better, then it is time to move on to adrenals and thyroid, if necessary.

[dwsmith]

Hi all, sorry for delay (i haven't felt well for few days), her Doctor said, she wasn't B12 deficient, because her red blood cells were normal size - does that make sense? She was also diagnosed with Hypothyroidism by Dr S, but the main problem i have, is that my daughter is 24, lives in London ( Im in Birmingham) and she doesn't feel anything is wrong and refuses to keep going to the Dr because of a new job - i feel completely useless especially as I had no support from her Gp about these results, also, I know she doesn't take her medication from Dr S - i don't know where to turn x

[PinkNinja in reply to dwsmith]

The doctor is talking rubbish. Her iron isn't great which would make her red blood cells smaller thus hiding the effects of the B12 deficiency.

Unfortunately, if she is not willing to listen there is very little you can do.

She would likely benefit from takin iron (with vitamin c), vitamin b12, folic acid and a vitamin b complex. She can buy them all over the counter. They all work together.

I'm sorry she is not listening to you. Hopefully she will soon and before she starts to get too unwell to continue in her new job.

Carolyn xxx

[helvella Administrator Thyroid UK in reply to PinkNinja]

It makes NO sense at all. That doctor needs to go for what the Soviet Union used to call re-education. Preferably in Siberia.

Low B12 can and does result in permanent, irreversible nerve damage. It is of great importance that treatment starts soon - and that should be loading doses of hydroxocobalamin by injection.

The links posted by hampster1 (our resident friendly B12 advocate) are excellent.

Rod

[Hidden in reply to dwsmith]

Yet again we see this dangerous ignorance from a doctor that you need to have macrocytic anaemia (enlarged red blood cells) to have B12 deficiency. You don't, the FBC can be completely normal. Her B12 is below range, that's the result he should be focussing on. A research paper which I hope your daughter will send to her doctor:

ncbi.nlm.nih.gov/pubmed/340...

"The present study, however, shows that only 45 (64%) of 70 consecutively diagnosed patients with pernicious anemia, the most common cause of cobalamin deficiency, had very low cobalamin levels (less than 74 pmol/L [or less than 100 ng/L]). Anemia was absent in 13 (19%) of the patients, and macrocytosis was absent in 23 (33%) of the patients; such absence was particularly common when cobalamin levels were only slightly or moderately low (74 to 184 pmol/L). Coexisting iron deficiency was responsible for the absence of macrocytosis in nine patients. "

I really hope you can make your daughter understand that leaving this alone could lead to irreversible neurological damage. If she does just one thing get her to watch this film:

youtube.com/watch?v=BvEizyp...(Not working as expected?)

H x

[PinkNinja in reply to Hidden]

I also read that macrocytosis is a late stage symptom so often doesn't occur until the deficiency had been present for a while. It's a bit like how they don't treat iron deficiency until you actually become anaemic. Amaemia often occurs after being deficient for a while too. Whatever happened to the old adage "prevention is better than cure"?

Carolyn x

[dwsmith]

Thankyou too Carolyn and Rod, my quest will start with a vengeance again tomorrow , i take all your advice and thank you x