Result

[SarahFerguson]

After many posts regarding my 19 year old son. After an 18 month battle, we finally had a second referral to see a Haematologist and we struck lucky. The Haematologist listened to my concerns and told the GP to trial B12 to see if his symptoms alievate. (Haematologist couldn’t understand why GP had not already done this). My Son had his first of loading jabs this morning. He has his loading doses and then 1 jab every 3 months in the meantime consultant has run more bloods and we have an appt on the 29th May to see Consultant for further discussion.

[clivealive Forum Support]

Hi SarahFerguson that's good to read. Was your son's Folate level included in the blood tests?

[SarahFerguson in reply to clivealive]

Hi Clive, his Ferritin and Folate appear ok at the moment.

[Sleepybunny]

Hi,

Glad to hear the haematologist listened.

Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

If your son has neurological symptoms eg tingling, pins and needles , tinnitus, tremors, memory problems , balance issues or other possible neuro symptoms then my understanding is that he should be on the neurological treatment regime.

In UK, this is a b12 loading jab every other day for as long as symptoms continue to get better followed by a jab every 2 months.

Haematologist and GP can find info on neurological treatment regime for B12 deficiency in

1) BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

2) BSH Cobalamin and Folate Guidelines, treatment info a quarter through guidelines.

b-s-h.org.uk/guidelines/gui...

Might be worth taking this information to next appt with consultant.

"He has his loading doses and then 1 jab every 3 months"

At moment he seems to be on the standard treatment regime for B12 deficiency without neuro symptoms

6 loading B12 jabs over 2 weeks followed by a jab every 3 months.

Link about writing letters to doctors about B12 deficiency.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Getting correct level of treatment is important as under treatment of B12 deficiency with neuro symptoms can lead to further deterioration.

pernicious-anaemia-society....

Did your son have the following tests?

b12deficiency.info/b12-test...

Full Blood Count and Blood film

patient.info/doctor/macrocy...

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

"his Ferritin and Folate appear ok at the moment."

Have you got the actual results for folate and ferritin?

Did the haematologist discuss the possibility of a PA diagnosis? If I remember correctly, there is PA in the family?

Hopefully haematologist has read following flowchart which outlines when PA and Antibody Negative PA can be diagnosed. If not, might be worth taking a copy with him to next appt.

stichtingb12tekort.nl/weten...

I am not medically trained.

[SarahFerguson in reply to Sleepybunny]

Hi Sleepybunny, Marcus doesn’t have Neuro symptoms, he has Gastritis and re-current mouth ulcers, general lethargy. He has low Vit D aswell. Yes, strong family history. His last folate/ferritin I’ve got a record of show folate:9.4ug/l (4-20) Ferritin 36ug/l (29-330) these tests done April 17. He has done more bloods recently but haven’t seen results. I am signing my son upto the system at the surgery so we can log on and check all latest blood results. One step at a time, I do feel that we have been listened to now. His last B12 was 142 and 174. Normal diet. The consultant has run a load of bloods, will get those results in May on our next consultantion.

[evergreen11]

Hi Sarah, so glad you are getting somewhere at last. Well done 💟

[Cherylclaire Forum Support]

Really pleased to hear it, SarahFerguson and Marcus. Don't get worried if it appears like nothing's happening at first ... seems to happen to a lot of people. It's bound to take a while after all this time.

Now and then I still get that (even though I self-inject every other day) : if I've had a hectic day, the next injection doesn't do very much and I have to wait for the next one to feel better.

Lucky to get a haematologist who doesn't think B12 is a highly addictive toxin, but mainly, it has been your tenacity that has got you this far. Let the NHS watch the numbers, and keep an eye on where he is within the range of "normal" , but you just keep watching your son. You'll know the signs better than anyone. Excellent news, and best wishes.