End of my tether...

[dorigen66]

My GP won't have it that my daughter may have a problem with B12. She has ALL, and I mean ALL of the symptoms of PA. She is increasingly ill, unable to go to college, exhausted, depressed and has lost over 4 stone in the last two years. They say bloods are within normal range. I have persuaded them to do thyroid tests but they will not listen to me re B12. Where can I get a private test done and where can I source reliable methylcobalamin (or whatever she needs) to inject ourselves?

[Penni]

I completely understand how you feel as my mum went through exactly the same thing with me. My PA was finally diganosed in Jan 2009 almost15 years after I'd fisrt starting becomming ill. You can get b12 patches on Amazon but I get my b12 on prescription from my GP but it did take a long time. Good luck

[holehead]

It's dreadful but sadly too common a result. However you need to be armed with information first you need a copy of the blood test results you are entitled to have them. You want to see the b12,folate,ferritin,vit D particularly but the full blood count is required. Then post them on the site and there are people here who can advise. You shouls also speak to the pernicious anemia society for advice, but once you have the test results you can move forward.

Hope you have success. Mark

[Sleepybunny]

Hi,

I've assumed you're in UK.

Have you considered contacting the PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS contact number on PAS website.

May be articles on Martyn Hooper's blog that are relevant to your situation.

martynhooper.com/

Who gets PA?

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines

I'd recommend reading above UK document. It gives guidance to UK doctors on diagnosis and treatment of B12 deficiency.

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

Flowchart from BSH Cobalamin Guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that patients who are symptomatic for b12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. IFA test can help to diagnose PA but is not always reliable and it is still possible to have PA even with a negative result in IFA test (called Antibody Negative PA).

Symptoms of B12 deficiency

pernicious-anaemia-society....

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

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Other B12 info

1) Pinned posts on this forum. I found it useful to read fbirder 's summary of mainly UK B12 documents. Link to summary in third pinned post.

2) BMJ b12 article

bmj.com/content/349/bmj.g5226

5th summary point may be relevant?

3) BNF (British national formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

4) B12 deficiency Info website

b12deficiency.info/

Lots of useful b12 info and interesting blog about B12 issues. perosnw ho runs website can be contacted by e-mail.

5) b12d.org

b12d.org

6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of PAS. book is up to date with current UK guidelines. I gave a copy to my GPs.

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

What to do next?

b12deficiency.info/what-to-...

Unhappy with treatment?

Link below about writing letters to GPs about b12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

HDA pct is a UK charity that offers free second opinions on medical diagnosis and treatment.

hdapatientcaretrust.com/

Most important thing I learned

It was to always get copies of all my blood test results. I learnt to do this after being told everything was normal/okay and then finding abnormal or borderline results on the copies.

In relation to B12, I look at b12, folate, ferritin and full blood count.

b12deficiency.info/b12-test...

Some blood tests may be available privately if GP unable to order them.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

Some people on the forum get complete set of medical records. Easier to get from GP surgeries but harder to get from hospitals in my personal opinion.

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

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

[Hidden]

Just in case you do need private blood tests, I used Blue Horizon. I requested the syringe type test kit, phoned Phlebotomy at my local hospital and asked if they could draw the blood for me. They were very helpful. Make sure you have it done Monday-Thursday so it gets seen by lab next day. I went straight from hospital to P.O and sent it guaranteed next day delivery. I think it was £99 for 11 blood tests and about £7 for guaranteed delivery.

My GP would not listen to all the symptoms I had, just said my B12 was within range (198) so barely in range. With advice from this forum I bought B12 ampoules from Goldpharma and a set of syringes, needles and swabs off Amazon. Watched a YouTube video of s.i and did the first one at a friend's house just in case there was any adverse reaction. I had no problems and after 6 injections I noticed my symptoms going.

I now need to inject about once every 3 weeks, can comfortably walk 2 miles with my dogs whereas last summer I couldn't walk from my bedroom to the bathroom (12 feet) without having to hold on to the walls.

Try all my Sleepybunny 's advice above and if you still get no help at GP consider the private testing / s.i route.

[Ryaan]

You can purchase B12 injections online fairly cheap.

Google (Versandapo.de)

It's a German company but there's option to translate page to English.

Then in search put (B12 depo)

You will see VITAMIN B12 injections.

You can buy 100 x 1ml ampules for less than £50.00. Actual price in euros is €55.90. You can also purchase smaller quantities (boxes of 10 injections).

There is a small shipping charge and quick delivery.

Then you can start self injection treatment. I learnt on YouTube how to inject into thigh which is very easy and I injected once a week and there was a big improvement after 9-10 weeks and then I carried on injecting 1 every 2 weeks which suited me fine, but you can ask again for advice on how often to inject or how to go about treatment.

There's people who know much more than me and I'm sure you'll get good advice.

Some chemists give out free needle packs or you can purchase syringes/needles on Amazon and even eBay.

When you inject you normally need to take Folic Acid daily together about 400ug once daily.

You can ask anything anytime on this site if you have any questions.

There is also a site called B12.org which might be helpful.

There is also PAS society who can help you and intervene on your behalf for your daughter, there's a fee of £20 for registering with Prenicious Anemia Society.

You do need to get a full blood test to see if your daughter is deficient in anything else.

Hope this helps.

[dorigen66]

Thank you all for your advice! I am currently trying to decide which lab/s to use for B12 testing. Anybody got any preferences or experience of this?