Took so long just to speak to doctor to get tests okayed. It was 2014 I was diagnosed with PA (never treated) and iron deficiency anemia (always given iron tablets. I'd feel ok for a while then cycle continues)
Doctor is repeating all tests had to do 6 tubes of blood and urine sample. thankfully I dont faint anymore. Everyday I've new symptoms the latest. Body heavy, bones cracking, Muscles hurt especially legs and either side of spine. I've a ache in right lower back and full filling under eft front rib. When tiredness really hits, you know when you cant function anymore and have to sleep. I can actually feel the weight of my lungs. It's very weird. Feeling happier now just need to wait a few more days.
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Calamity4
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If your diagnosis in 2014 was for Pernicious Anaemia and not "just" B12 deficiency , cause uninvestigated, then treatment is for life as there is as yet no known cure.
The first thing I would ask for if I were you is a copy of your records: in particular, the test/s showing that you have Pernicious Anaemia.
Have you had your test results back yet from the retesting ?
Get a printout from your GP : if you need any help understanding what is shown, post your results. You can scan these but need to mask personal details: your's and GP's.
The tests for Pernicious Anaemia are notoriously unreliable. Just remember that if you had it, you've still got it.
My folate and ferritin levels were at the low end of range when I was found to have B12 deficiency. BUT they were in range. I was only given 3 months supplements for both because my hair was falling out and gums were bleeding -- after B12 injections started. So seeing your results on paper can make a difference. Both of these showed up on blood tests as "normal: no action" because they were within normal range.
Vitamin D might also be low. I am on vitamin D3 tablets because I have been found to have osteoporosis of the spine.
So check your folate, ferritin and vitamin D results especially.
Pernicious Anaemia is an autoimmune condition, and sometimes these come in multiples (eg. plus Hashimoto's, or psoriasis, or vitiligo). Not always, just signposting other conditions you might have that help confirm what has already been discovered back in 2014 - that you have PA.
I wish you luck, and hope you get the treatment you need to control your symptoms. Let us know how you get on.
Got some results receptionist couldn't tell me the rest. Doctor is phoning later to discuss. Don't know numbers yet but I will ask for a copy of test results to be emailed to me.
Low Iron and vitamin D deficiency
Left prescription for iron tablets and Plenachol 20 000 IU.
Well that was a waste. Dr just phoned B12 is normal. Other tests for Pernicious Anemia go to Belfast and take a month. I asked her about b12 she said low iron and vitamin D deficiency would give the same symptoms. I was totally knocked off guard, I forgot to ask for print out of result. I will get it tho.
Do that, Calamity4 - would be interesting to see whether folate is also low/ low end of range.
Wonder what kind of PA tests are going to take a whole month ? At least you are getting tested for something ! - Or should I say retested ?
Wonder whatever happened to your 2014 diagnosis ? Should your results come back negative for PA this time round (being that they are unreliable), it might be worth asking what happened to the original diagnosis. I would certainly want a copy of that, if nothing else. Your GP must be aware that there is no cure for Pernicious Anaemia - so if you have tested positive already, no matter how long ago, and these records still exist on your file, all this waiting is unnecessary. Regular injections should have started 5 years ago.
Also might be worth asking GP why she thinks that you are unable to maintain healthy iron levels long-term.
Have you been taking any B12 supplements - vitamin tablets containing B12 or spray/ sublinguals ? What is your diet like ?
PA result should be the same as 1st time tested had i had anti bodies and cells. camera test also found stomach lining was thin. They took a sample confirmed PA. They just don't get, putting to much faith in b12 test that says normal. But before my blood cells were abnormally large and I thought that was a clear sign of b12 or folate deficiency.
My diet is good different meats, fish, fruit and vegs.
Yes you are right: in theory, tests should say the same thing every time, because PA doesn't go away. However, the IFab test is flawed - and can show a false negative 40% - 60% of the time - there is a chance that on this test alone, you might get a reverse result. It seems highly unlikely that this is the only test being done here, luckily.
Anyway, we are talking semantics here, because a positive result for PA in 2014 would overrule a need for any testing at all now, as a positive result for PA is 95%+ accurate.
Quite why you got no treatment in 2014, with clear evidence of a lifelong condition, is a complete mystery.
Bless your floppy red blood-cells, Calamity4 - keep going !
Hi, not much of an update have to wait a month to get a printout of my lab results, other tests not back yet. I do have some numbers that the receptionist reluctantly give me. as you can see B12 is always within range. Confused 🤔
Serum B12 does seem comfortably within range, but both folate at 9.1 and iron at 7 seem low end of ranges - which according to lab used by my medical centre would be 4.6-18.7 ug/L and 5.8- 34.5 umol/L respectively ( assuming same units of measurement used ).
While you are waiting for those all-important results from Belfast, I would ask for a printout of previous records, specifically that PA diagnosis in 2014. I would be very surprised if those tests weren't initiated as a result of a low serum B12 reading - that also would be worth looking into if you have the energy.
Low folate and iron would make you very tired, and might alone explain your symptoms, except that you had this earlier diagnosis for what is an incurable condition. Which makes a normal B12 reading seem unlikely. Doesn't make sense does it, Calamity4 ?
If you are not able to tackle the issues of the ignored diagnosis, then how about asking why your folate, ferritin and vitamin D are all low, given that your diet is not to blame ? (These are all often low alongside a B12 deficiency.)
Look for a comprehensive B12 deficiency symptoms list online: tick those that apply to you. (Pernicious Anaemia Society have one. ) Keep copies for GP/ specialist appointments.
Make a chart of your main symptoms, and ensure you include any visible ones (eg for me, that would be a sore mouth with split and bleeding corners) - then get into the habit of recording daily which ones you get and at what level of severity. You said new ones arriving ? Keep a few columns free to include those! This will help if you see a GP or specialist and they ask questions that are difficult otherwise to remember, like "When did you first notice that symptom?" or "How often does that happen?" It will also help you notice whether any treatment is working/ not: sometimes, symptoms fade away so slowly, you barely notice and just forget about ever having them.
Take someone with you to appointments if you can: they can back up what you are saying, might remember things that you have forgotten and can take notes if necessary. You also might not be so easily dismissed if you have a witness; that sounds a little harsh but sadly, some people reading this will be nodding and smiling in recognition of the truth of this.
Let us know when those results are in. Hopefully, you will then get some answers and some treatment. Sorry I'm not able to help you more right now. Good luck.
I seem to have small patch of skin becoming white(might be vitiligo) from one year and I have PA for which I am taking b12 injections from 2 months. Will vitiligo stop with b12 injections.
Very good question, Thulasi1 , which probably won't get noticed down here at the end of another post.
Try writing this again as a post of your own, put "Question about Vitiligo" or something like that as a title- you will get a better response.
All I know is that there is a definite link between autoimmune conditions, vitiligo and PA both are in this category, alongside many others. Thyroid conditions for example. Unlucky people get more than one autoimmune problem.
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Finally had blood test
Finally things are moving forward...
Confused any advice 
Finally after six long weeks of waiting....
