Frustrated and Fed up

[CleoG]

Hi, am new to this feeling really frustrated. Don't know where to start so will just jump in. I am thinking of injecting myself but don't know anything about doses. Am having another blood test this week after going to the doctor for the third time because I am not holding the B12 injections (every 10 weeks) My.doctor has said she doesn't know enough about B12 Gave me the number for talking therapy asked if l thought lwould commit suicide!!! I just want to feel better and be able to think straight. Anyway thanks if you can give me some direction.

[Lisahelen]

How frustrating for you! Your gp (in the real world) should be making an effort to find out how to treat you rather than admit to not knowing how to. At the very least referring you to find out what and why your levels are dropping.

I could suggest you take it upon yourself to ask her to look at the medics section on this site or buy martyn hoopers book and pass it to her - depending on how ameniable she is to you forwarding suggestions to her.

When you have your next test try to get them to include everything connected to b12 ie folate. You could also ask if a referrel has been forwarded without you being aware.

[CleoG in reply to Lisahelen]

Thankyou will give passing the info onto her and also ask if l ha e been tested for folate. Also will ask about referral. Lets hope this will help. Would it be worth mentioning l am thinking about s/i

[Lisahelen in reply to CleoG]

I think most of us actually try to get our gp to treat before we go down the si route. For most of us i would say its a last resort when all else has failed. See how your next appt with your gp goes and what she proposes to do with regard to a further treatment plan before you do si.

[Sleepybunny]

Hi Cleo,

"I am not holding the B12 injections (every 10 weeks) "

Do you have any neurological symptoms eg tingling, pins and needles, tinnitus, balance isssues, memory problems plus many other possible neuro symptoms?

List of B12 deficiency Symptoms

I gave a copy of PAS checklist with my symptoms ticked to GPs.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, people with B12 deficiency with neuro symptoms are supposed to have B12 injections every 2 months (which is less than 10 weeks).

Did you have loading injections when first diagnosed? Standard treatment is 6 loading injections over 2 weeks but for those with neuro symptoms it's an injection every other day for as long as symptoms continue to get better.

How many loading injections did you have?

See links below

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

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

Info on UK B12 treatment is also in BSH Cobalamin and Folate Guidelines, about a quarter through document. I'd recommend reading whole document.

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

Do you have a diagnosis of PA (Pernicious Anaemia)?

This flowchart below from BSH Cobalamin and Folate guidelines outlines when PA or Antibody Negative PA can be diagnosed.

stichtingb12tekort.nl/weten...

Have you considered joining PAS (Pernicious Anaemia Society) ?

pernicious-anaemia-society....

PAS tel no [phone]

I am not medically trained just someone who has struggled to get a diagnosis.

[CleoG in reply to Sleepybunny]

Thankyou for your reply. I have been diagnosed with PA 18 months or so ago. Yes pins and needles, Always tired, brain doesn't function properly. Losing things all the time through not having a clue what I am thinking. I will definitely take info from PAS to my doctor at my next appointment. Thanks for your help 😊

[CleoG in reply to CleoG]

Yes l did have loading injections 6 over a two week period.

[Sleepybunny in reply to CleoG]

"Yes pins and needles"

Pins and needles is usually considered to be a neuro symptom. Medical name is "parathesia"

en.wikipedia.org/wiki/Pares...

If you had pins and needles when you were fist diagnosed (and possibly other neuro symptoms) then I cannot understand why you were not given the b12 loading regime for those with neurological symptoms.... one every other day for as long as symptoms continue to get better.

If people don't receive the correct loading regime, recovery may be delayed. Has GP explained why you were not given the loading regime for those with neuro symptoms?

If GP is unsure about the loading regime for PA with neuro symptoms, it is in BNF British National Formulary Chapter 9 section 1.2 and also in BSH Cobalamin and Folate Guidelines, about a quarter through document. It's possible to get own copy of BNF from a good bookshop or popular internet retailer. A kind GP might let a patient look at their own copy and they are likely to have a copy sitting on desk or bookshelf.

It may be worth joining PAS (Pernicious Anaemia Society). They can sometimes intervene on behalf of those struggling to get correct treatment by writing letters and at the very least can pass on useful information.

There are stories on Martyn Hooper's blog about how PAS has helped people.

martynhooper.com/2017/07/01...

There is also a section on PAS website for health professionals that your GP may find helpful.

pernicious-anaemia-society....

Untreated or inadequately treated B12 deficiency can potentially lead to permanent neurological damage including SACDSC sub acute combined degeneration of the spinal cord.

Story on Martyn Hooper's blog that mentions SACDSC

martynhooper.com/2010/09/21...

Quite a few on this forum struggle to get correct level of treatment in UK for B12 deficiency with neuro symptoms. I think some on this forum with neuro symptoms have tried to get correct treatment by writing about consequences of undertreatment to their GPs.

Link about writing letters to GP about B12 deficiency.

Point 1 in link is about undertreatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Person who runs above website can be contacted by e-mail. Details on website.

[CleoG]

well here we go again !! Spoke to doctor yesterday. Gave her some information from PAS. Her answer "l don't think you have had a stroke! Asked if l excersised and told me to continue with that. Am going to have another blood test to look for other things as she doesn't believe from my last blood test l am not holding b12. It must be something else. Maybe anxiety or aleric to the atmosphere. I went because the pins and needles had started popping up all over the place. Still tired foggy but really frustrated. Sorry for the moan but the doctor isn't listening my b12 injections are not lasting 10 weeks. Take ages to kick in,ok for about 3 weeks then start to ease off, back to feeling rubbish. My blood test will look fine because it is right in the middle of the 10 weeks when I tend to feel better! Have not got a clue, maybe I am not as bad as I think who knows anymore.