Results for daughter, advice needed

My daughter is 21, exhausted, cold, thin, clearly sick, exercises, healthy lifestyle, no drink or drugs. I have Hashis, so I Blue Horizoned her. A few years ago her TSH was 2, now it is 3.02, so it is now failing, though there are not yet enough antibodies for Hashis they are rising.

No inflammation, but ferritin is only 30 though she is meat eating. (ref 20 to 150, the modern WHO range.)

Vit D fine.

folate 16.97 (ref 10.4 - 42.4)

B12 159 range insuff 140 - 250

I have long supplemented myself with B12 because of tingling in extremities, but she doesn't bother with the pills mummy puts out for her to take to university. She has taken a bit of methylcobalamin though in the past year, which makes this result all the more worrying. My own intrinsic factor test was negative, but I have long suspected AIG.

I understand the results, but advise me on what next... She should not take supplements for B12 until more tests are concluded... tests for intrinsic factor, serum gastrin, what is the other? Should I just go straight to the new Blue Horizon b12 test rather than trying to educate the college nurse and university GPs? If I don't sort this out it will affect her degree as well as her life, she is barely surviving the demands of university.

All advice gratefully received.

[Sleepybunny]

Have you thought about joining the PAS? They might be worth talking to and could certainly pass on useful info about B12 deficiency tests.

pernicious-anaemia-society....

PAS tel no 01656 769 717 Office open from 8am till 2pm every day except Sundays.

There may be stories on Martyn hooper's blog that are relevant to your daughter.

martynhooper.com/

There's a news story on the PAS website about Students and PA which may be relevant to your daughter's situation.

pernicious-anaemia-society....

Have you looked at the PAS symptoms checklist? I ticked all my symptoms on this list and gave it to GPs

pernicious-anaemia-society....

"B12 159 range insuff 140 - 250"

Is this how the results were recorded on her copy? insuff is surely short for insufficient .

If her surgery have accepted that her levels are insufficient i can't understand why they are not treating her especially as it is made clear in the "BCSH Cobalamin and Folate guidelines" that people symptomatic for B12 deficiency should be treated even if B12 levels are within normal range. See page 29 BCSH Cobalamin and Folate guidelines.

Other useful B12 articles

bmj.com/content/349/bmj.g5226

B12 websites

pernicious-anaemia-society....

b12deficiency.info/

b12d.org

Do you go with your daughter to appts? I take a copy of the summary fbirder compiled with me to appts. Lots of useful quotes from B12 documents in it. link to summary on his profile page or in third pinned post on this forum.

Well informed is well armed and I have had enough experience of doctors who have not done their homework to make sure I do mine.

B12 books

"Could it Be b12" by Sally Pacholok and JJ. Stuart

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

Good luck and I hope your daughter gets the help she needs.

I am not a medic just a person who has struggled to get diagnosis.

[Hidden in reply to Sleepybunny]

thanks sb. It was a Blue Horizon, not a gp test, but definitely insuff. I have ordered the B H active B12 test and she can go to the gp with these results and ask her gp for the intrinsic, gastrin, parietal cell tests ... if the gp won't, I will Blue Horizon but they are expensive.

She musn't take B12 until the active test is done, but once that is done she can start supps I think ... it won't distort the antibody tests?

[Gambit62 Administrator]

This is an extract from pinned post

healthunlocked.com/pasoc/po...

Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test.

[Hidden]

GP has ordered intrinsic factor test as a result of my pleading letter and a repeat b12 test "because results fluctate", fingers crossed she will do more if it comes back low again.