FED UP with no Real outcome in sight

Ask to be refered to a gastrologist and they will look into why your b12 and vitamin d deficent and why your body is not absorbing it and test you for celiac diease and other gut problems I too iam not pa but receive b12 injections for life after seeing a gastrologist hope this help x

elizabucha ,

This was me a year ago,46 year old with a long history of symptoms.I thought I was losing my mind.B12 was 174.Falling for 4 years ,not picked up until below the "normal" range(180).I had my loading doses ,one a week 6 times,then fought to get them monthly.

Eventually I woke up to the fact that most doctors are absolutely clueless to B12,and the real damage it causes.

I repeated my loading doses at home (also woke up and took my life back and started self injecting) every other day for 10 days,I then went on weekly and now every 2 weeks.

Your B12 is like a bath that has slowly leaked until it ran dry,filling it with drops will not work.You need to flood it(load up until no further improvement) then you can ease off and keep topping up,whatever suits YOU.

It was very scary starting to self inject.I felt like I was doing something illegal.I was lucky to have people to ask questions of on this site and others.I looked up how to inject (on You tube).

I've since changed doctors and barely mention my B12(I have it under control and frankly know more than they do on the subject)

....by the way"the pill" (contraceptive pill) uses up your B12 stores faster,as does stress,exercise and alcohol.

Take your life back Elizabucha.If you need any help,we are here.

Best of luck,you can crack this ( :

Hi,

I've assumed you're in the UK.

"Also the intrinsic factor test was negative, so GP said I don't have PA!"

It is possible to have PA with a negative result in the Intrinsic Factor Antibody(IFA) test.

The IFA test is not always reliable. Martyn Hooper, the chair of the PAS tested negative on more than one occasion with the IFA test before testing positive.

"BCSH Cobalamin and Folate Guidelines"

These came out in 2014. I was told the NHS should be following them. In the guidelines, it mentions Antibody Negative PA. I read the whole document and then gave a copy to my GPs. Does your GP know it is possible to have Antibody Negative PA?

I found page 29 in the BCSH Cobalamin guidelines useful, it's a diagnosis flowchart that gives guidance on treatment and diagnosis of b12 deficiency and also mentions Antibody Negative PA. The PAS library section has a summary of the BCSH Cobalamin Guidelines.

pernicious-anaemia-society....

I'd urge you to contact the PAS who are very helpful to talk to and who can probably tell you about negative results on IFA tests. If you leave a message they should get back to you within a few days.

pernicious-anaemia-society....

01656 769 717

Office open from 8am till 2pm everyday except Sundays.

Useful websites

b12deficiency.info/

b12d.org

martynhooper.com/

Useful books

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

Very comprehensive book on B12 deficiency

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

Very up to date on new guidelines, came out in 2015. Martyn Hooper has written other books on B12 deficiency and PA. I gave a copy to my GPs to read.

As you are in Scotland you may be interested in reading about a petition about B12 that went before the Scottish Parliament.

scottish.parliament.uk/Gett...

Denisehugs45 mentions Coeliac disease. Have you ever been tested? It is possible to still have Coeliac disease even if Coeliac blood test comes back negative. See links below about negative results.

coeliac.org.uk/coeliac-dise...

coeliac.org.uk/coeliac-dise...

It's important to be eating plenty of gluten in the weeks/months before a Coeliac blood test.

There are quite a few people on this forum who have some form of gluten intolerance.

The symptoms of b12 deficiency/PA can overlap with those of thyroid problems. Have you ever had thyroid tests? There is a very active Thyroid forum on HU. Marz knows a lot about Thyroid problems if you search for her posts.

thyroiduk.org.uk/tuk/

Some drugs/medicines can interfere with the uptake of B12 in the body. There are some that interfere with folate metabolism. See link below.

b12deficiency.info/what-are...

I have found out that sometimes GPs are using local NHS B12 deficiency management guidelines that have not been updated since the BCSH Cobalamin guidelines came out. I found out my local guidelines and then compared them to the BNF (British national formulary) Chapter 9 Section 1.2 and the BCSH Cobalamin guidelines.

Local NHS B12 deficiency Management Guidelines might be found by an internet search, a search on local NHS website or a FOI (Freedom of Information) request to local NHS website.

"That was taken 2 weeks after my 3 monthly injection. "

The fact that you mention a 3 monthly injection suggests you are currently on the standard UK treatment for B12 deficiency without neurological symptoms. How many loading doses did you have at the beginning of treatment?

Do you have any neurological symptoms? See links below.

pernicious-anaemia-society....

See Symptoms Checklist. I ticked all my symptoms and gave a copy to GPs.

b12deficiency.info/signs-an...

Patients with B12 deficiency and neurological symptoms should receive more intensive treatment with extended loading doses. See Management section in link below.

patient.info/doctor/pernici...

As sleepybunny suggests - it would be a good idea to have your thyroid tested. Not just the TSH which is what most GP's and Labs try to get away with. You also need the FT4 and FT3 tested along with anti-bodies - Anti-TPO and Anti-Tg. Auto-immune illness of the thyroid is the most common globally and is called Hashimotos. If your GP will not oblige with the correct testing then you can have it done privately through the main website of Thyroid UK - with a discount. It can be done in the comfort of your own home.

I am not sure which comes first - the thyroid issue causing low levels of Ferritin - Folate - Iron - B12 -VitD - or the low levels causing a thyroid problem. Chicken or egg ? I do know for sure that when Ferritin etc are low that the T4 - ro storage thyroid hormone - cannot convert into the ACTIVE thyroid hormone T3. Every cell in your body has a receptor for T3 - so they are there for a reason. If the T3 is low - then it is like trying to spread a spoonful of butter on a whole loaf of bread ! It is the same for VitD - a steroidal pre-hormone and not just a vitamin.

I have read and been advised that you need to take a GOOD B complex to keep all the B's in balance when have B12 treatment. Maybe look into the difference between Folic Acid v Methylfolate. Synthetic v Natural.....

Happy to help if you would like more advice about the thyroid....

thyroiduk.org

Are you supplementing with folic acid? B12 needs this to do its job.

Have you looked at any gluten or dairy ( casein protein) intolerance?

I'm now 58 and had this for 8 years. I find that the aches are only when getting started. Once I'm up and going I feel better. I can usually go all day and over do it if I don't watch out.

Gentle exercise. Swimming. You want range of motion exercises to move all the muscles. This movement stimulates activity in the nerves and promotes healing of the nerves.

Do you also supplement with vit B6 to promote nerve repair? Just the RDA dosage.

Keep a logbook. Score the severity of your symptoms. Your own scale is fine. Also record food, drink and meds. There is a 3 to 48 hour delay between eating something and a symptom due to the gut being involved.

Remove suspect food for two weeks to allow the body to completely eliminate all byproducts and residual toxins. Then reintroduce to determine if the symptom(s) are related.

The log also serves as a memory due to short term memory loss from the B12D. The progress of nerve repair is slow so you need the log to see how you have improved. Or assess what medication is doing.

Pain is actually a good indication that nerves are healing. Signals to the brain are stronger and it takes the brain 2 to 3 days to recalibrate to the stronger signal.

Also alcohol is completely out as it destroys the other B Vitamins that b12 need to do its job. For me it is like a 4 day hang over.