HELP desperately needed….. 🤒

[Joanne1971]

I haven’t posted in quite a few years. A little about me 51 yo self inject very 6-8 weeks, no Dx PA,

Holo tc test 19*😳(this is the active test for anyone who might be new to all of this, the PA veterans Are a mine of information)

Serum b12 -279

These tests were way back in 2013. 😱 I battled with my doctor armed with my Holo tc results and begged for Injections, they agreed … eventually, with hindsight I think my doctor had no idea which tests to perform to prove PA, she asked me which ones and I didn’t know too much at the time either and I said gastric parietal cells, and it came back negative.

So fast forward ,I still have no diagnosis and still have megaloblastic anemia , folate def , and I’m still riding blind as to what other autoimmune disease is causing my new symptoms ,

My iron is rising now at 232 serum ferritin, was 36 before hysterectomy, I have paid for genetic testing for haemochromatosis which has come back a pos for H63D variant ( carrier) single copy.

Im really down ,I have had a barrage of tests, virtual colonoscopy ( absolute agony in the Upper GI from the inflation) scan after scan, blood test after blood test.

I’m to scared to eat from the pain, I was thinking atrophic gastritis, h.pylori, or coeliac?

if anyone can just point me in the right direction I’d be sooo grateful, as my GP just thinks I’m pulling his leg., but he must have forgotten there has been no explanation of my folate & B12 deficiency.

Thank you guys

Much love

[Pickle500]

What symptoms do you have now? Are they getting you down?

Sorry it's so hard. Especially with multiple complexities to navigate.

[wedgewood]

I would say for a start , why not self-inject more frequently? Perhaps a loading dose course of every other day .We know that we cannot overdose on B12 , and is totally harmless ,

Then I would take a modest Methyl folate tablet daily , to see if that helps your folic acid reading .

I also suggest a a pre and probiotic . Or an increase in probiotic foods like real yogurt , kefir , kimchi and sauerkraut .

Eat smaller meals and chew very thoroughly .

If these suggestions do not help you , they will do you no harm at all , which is very important . Best wishes .

I’m sorry that I’m not more helpful . I hope that you get some better responses than mine .

[nitaslenz108]

Use the NICE guidelines for treatment of PA with neurological symptoms. Which is everyday or every other day injections with 5 mgs of folic acid daily till neuro symptoms are gone. This can take several years. You will experience significant improvement in pain and cognitive within 2 wks or 1 month. I've followed protocol for almost 2 yrs and got my life back! It's amazing to not have so much pain all the time! So sorry you are suffering right now. It truly is a special kind of hell that I wish upon no one. Please consider the treatment. Also look up one carbon metabolism to help understand why folic acid is needed daily with every day shots. Best wishes!

[Cherylclaire Forum Support in reply to nitaslenz108]

NICE medical guidelines for B12 treatment frequency for those with B12 deficiency presenting with neurological symptoms is to administer every other day injections until no more improvement can be gained by it, then a maintenance injection every 2 months.

The NICE guidance for PA/B12 deficiency is currently under review and new set of guidelines due out in November this year. I am hoping that the guidelines for maintenance injection frequency is less generic and more based on observance and doctor/patient discussion, on return of symptoms. In other words, on individual ability to maintain gains made with EOD loading injections. A big idealistic ask ? Perhaps- but clearly the single function of a lifelong maintenance dose.

I cannot agree about the massive amounts of folic acid suggested.

Unlike B12, B9 can have adverse side effects in large quantities. If low, a GP should be able to give a short-term high - dose supplement -usually 3 months supply - and will retest at the end of this period.

My folate and ferritin were monitored and took 2 years to stabilise at healthy levels without the need for on/off supplementing advised by GP. Six methylmalonic acid (MMA) tests over three years showed raised MMA, despite B12 injections, until the sixth - which was fine, mid-range for the first time.

In any case, a B12 deficiency should be addressed prior to any folate deficiency.

@ joanne1971 - I think your active b12 test and megaloblastic anaemia should be huge indicators to a GP. IFAb test could be useful - as long as your GP understands that a negative result is possible in around 50% of those with PA, so cannot rule out PA. A positive result however - that would be worth keeping -and probably framing. that would be the answer you are looking for. *

MMA test is a useful secondary test if B12 levels are not indicating deficiency, but symptoms are. But to me, this has already been answered by the HoloTC test.

Also, what was the decision reached about the cause of megaloblastic anaemia, if not PA ?

You have not said what symptoms are causing you problems - are they neurological ?

If pain is preventing you from eating, you need to return to your GP.

* Note: Martyn Hooper, founder of the Pernicious Anaemia Society, had three IFAb tests before getting a positive result. He also has written a very useful book that may help you decide what to ask of your GP next.

[Sea-blue]

Hi Joanne you could ask for an Intrinsic factor antibodies test. You need two weeks off any B12 supplements for this. If positive you would have a diagnosis of Pernicious Anaemia, if negative it doesn’t rule out PA as you can have antibody negative PA. But if it was positive then ensure it’s on your medical notes and take a copy. If negative consider more self treatment

[Joanne1971]

Hi All that kindly replied,

I have been Self injecting every other day for a week this was last week,as though I was doing loading doses, stopped taking the dr’s folate tabs as felt rubbish while on them I knew they were making my b12 drop, so decided to reload with a view to going back on the folic acid tabs once I had brought my b12 up.but keep urinating constantly ,every 20 mins.

I never see the same GP ever, at that’s even if I get an appointment at all.

So Ifab was tested and neg 6th Feb 23.

My symptoms now as follows- massive bloating I go from a 39 inch waist🤫to 45inches in minutes, After even drinking a sip of water of a morsel of food. Pain under right rib cage (poss gall bladder issue) belch when I stand up😮‍💨 even when empty ,indigestion even when empty,I hardly eat anything, and It’s getting less and less. Griping pain in stomach in the morning is when it’s at its worst,numbness legs and arms, complete loss of feeling in my forefinger ,headaches daily, fatigue, constipation neck pain, bruxism TMJ,degenerative discs C5 C6, muscle weakness and bone pain.

apart from that I’m just fine🤒.

Much love Jo x