pernicious anemia

[ack6959]

Hi all

Iam in a horrible position in my life iam sufferimg from different symptoms from 2 years my symtoms gradually increasing like extreme fatigue pins and needles memory problems depression i spent more than 1 lakh for medical tests but every test came out normal 1 year back my b12 level came 80pgml doctor gave tablets but not completly cured on the comming days symptoms got worse recently i went for pernicious anemia test after watching pernicious anemia website in that IF antibody came negative and pareital cell antibody test positive and gastrin level 280 and also foamy urine doctor said it is normal and he dint even given a tablet my eyes are getting blur and black spots please someone help me.

[Nackapan]

Have you not been offered b12 injections?The Intrinsic factor antibody test only gives 50% of those with PA z positive test.

If negative you could still have PA.

Absorption issues are varied.

Tablets only work for minority .

Also that minority have to take high doses 1-4000mg a day .

It's a complex process that is poorly understood by medics. .

Has your folate level been checked.

Vitamin D

Iron ect.

Thyroid tests.

My first b12 level was similar to you .

My daughter even lower.

We are both on regular b12 injections ax tablets did not help.

A positive parietal cell antibody test must show something a mis

Is your diet b12 rich.

Are you only medication.

Have been tested for parasites

Any other reasons.

Plenty of posts here to help

[ack6959 in reply to Nackapan]

No , no doctor advised to take b12 injections once i forced doctor then he prescribed 2 injections thats it no difference. Ialso had vitamin d deficiency and i did hpylori test it came nagative.

[Nackapan in reply to ack6959]

Could always ask for a trial of b12 injections if nothing else found

In the UK ag least 6 are given

In other countries one a week for ?10 weeks then review.

List your symptoms

Keep a record

[EllaNore in reply to ack6959]

I am so sorry about your condition ack6959. You sound pretty scared. It is very scary at first. You do not know what is happening. But this forum has helped me so much. I am new to PA so please do not take me at 100% accurate. But 2 injections is not enough to make any kind of difference. I've been doing daily injections on my own for 2 of the 3 months I have been diagnosed with PA, and have barely found relief but it IS happening. I order my b12 from Canada and I inject it myself daily. If you can afford to buy your own b12 injectable, I feel that would be a good thing. You can't OD on b12 so you would be safe. I see that most people inject daily until their symptoms get better and then some can go weekly or every other day or even once a month. I hope someone jumps in and corrects me if I am wrong. Good luck to you.

[Haveitall in reply to Nackapan]

I agree with someone else who answered about ordering from Canada and self injecting. I have a prescription for once a week that insurance covers so I buy from Canada so I can do daily. I actually found a specialist in Los Angeles I see and he’s going to try to get insurance to pay for daily. I was at once a week until I developed a new symptom dry mouth. I’m back to daily as I’m desperate for this symptom to go away.

[ack6959 in reply to Haveitall]

I ordered from uk 2 times it is getting stuck at same place i think it is not coming drom customs.

[VellBlue in reply to ack6959]

Assume you are in India?

You can buy B12 ampoules in India but you need a prescription. Try googling "nurokind mecobalamin injection", there are many other manufacturers also.

If you have had a positive test for parietal cell antibodies then it means you very likely have pernicious anaemia.

50% of people with pernicious anaemia get a negative on the intrinsic factor antibody test - so that negative can be ignored given your positive for parietal cell antibodies.

Tablets are unlikely to help much given you have absorption problems due to pernicious anaemia. You need injections. 2 is not enough. Please tell your doctor to prescribe you more. Extreme fatigue, pins and needles, depression are all classic B12 deficiency symptoms. Ideally I'd suggest you should have every other day injections to start, and then reduce to once per week. If your symptoms continue to stay away then reduce again, if they come back then increase, find out the frequency that keeps you well.

It may take time for your body to recover, but make sure you get the B12 injections and nutrition you need and it will happen. Take care.