Advice needed please Could I have PA?

[Bekg2k]

Hi everyone I really need some advice I was diagnosed with fibromyalgia many years ago and was recently quite poorly with other symptoms including breathlessness, chest pain and pins and needles among others. I've had cardiac reasons ruled out and ended up having some extra blood tests done which showed I had low b12 and folate. I was started on loading doses and towards the end i was actually starting to notice an improvement in my symptoms but they have started to come back. My doctor doesn't seem confident in what their doing as when I brought up the possibility of having PA I had to quote NICE guidelines to convince them of further tests. I've also been put on daily folic acid. I've attached some of my recent blood test results if anyone can give me some advice I had another test after my loading doses which showed my b12 as much higher but folate even lower. Am supposed to be having another blood test on Monday for some Immunology tests but I'm not sure if it's the right kind. Any advice appreciated

[Nackapan]

Are your maintenence injections sorted?

The tests usually done for PA are parietal cell antibody test or intrinsic factor antibody test.

There are many posts about theses tests . A positive intrinsic test seems reliable but negative does not mean you don't have PA. A negative parietal cell antibody test gives 80% reliable 20% could have PA .more detailed in other posts.

I got confused with this. No test currently used appears to be 100% accurate. But treatment should be on symptoms.

You don't need B12 blood tests anymore once on injections. The one after loading doses will.be very high.

If you having neurological symptoms the injections should continue every other day until no further improvement. My serum b12 level was the same as yours. I after loading doses was supposed to wait 3 Months but I went back to every other day as was poorly. Had to quote bnf guidelines. With the help from this forum. Usually the antibody tests are done before injections start !

I hope you have had some benefits from your loading doses.

You would be wise to add vit D folate pottassium and iron to your next bloods if not on there already.

You may benefit from a multi vit .

T C

[Bekg2k in reply to Nackapan]

Hi thanks for your reply the new blood form does mention parietal cell antibody..I get the impression from my dr that their not confident with procedures! My symptoms include as mentioned before breathlessness, chest pain, pins and needles, tachycardia, pslpitations, stomach problems, headaches/migraines, eye pain and crazy tiredness among other things like mood swings and forgetfulness. Because I have the fibro diagnosis (which I add took 3 years) a lot of these things have just got put down to this with no attempt to explore further. At present my next scheduled b12 jab is in 3 months time (taking my folic acid in the mean time)and as I said I took me quoting the guidelines just to get my dr to do this different blood test.

I was told my other bloods were normal so not sure what to think but definitely noticed a difference when having the loading doses. I'm constantly having to battle to even get clinicians to consider that what might be going on may or may not be fibro related and wanted to make sure I was asking for the right things.

[Nackapan in reply to Bekg2k]

Go by your symptoms. If the injections helped try and get some more.

Either every other day or at least 2 monthly. I had a bit of a fight initially to get more but then they saw my progress!! I started to be able to walk in a straight line!

I'm still.on 2 weekly . Tried 3 Weekly but symptoms were coming back. Am trying again but if it happens again will stick to 2 weekly regime.

Yes with a diagnosis of fibromyalgia you are right they could stop considering other things. Keep pushing if you feel the injections helped you. So it is trial and error gps work like this all the time but they must work with you.

It takes time to get repair work done after so long.

Hope it goes well.

My parietal cell test was negative. I still get the b12 injections. I've been told for life.

Like I said alot of uncertainty with tests and doctors donr seem that interested in cause if treatment is the same.

That's what I have found.

[clivealive Forum Support]

Hi Bekg2k

You were certainly both B12 and Folate deficient when the above tests were done and it would be good to identify the cause.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you see yourself among any of the above "people"?

If you are continuing to have neurological symptoms you might point out to your doctor that according to the BNF guidelines B12 injections can be given every 8 weeks instead of 12.

bnf.nice.org.uk/drug/hydrox...

"Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months."

I am not a medically trained person but I've had Pernicious Anaemia (just one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Bekg2k in reply to clivealive]

Hi thank you for your advice I'm actually 35 my diet is pretty good and it contains lots of things with b12 in which my dr agrees its probably not diet related. I don't really fit in with the list above except for the fact that I've been told I have ibs again it gets put down to my fibromyalgia my last blood test after the loading doses my serum b12 went up to 1540 and my folate went down lower to 2 .4 .

[Ritchie1268 in reply to Bekg2k]

Hi.

So sorry you're struggling. A lot of people on here with PA suffered with similar symptoms.

I was told I had IBS around 13yrs ago, had an endoscopy & even though they took a biopsy & found some inflammation, I was never diagnosed.

Fast forward around 11.5yrs after high dose Opiates throughout this period & was diagnosed with PA, B12D, MA & Folate deficiency in March last year.

I had to start self Injecting as many do, & I've never felt better. I SI every other day & have since Xmas. I also have small fibre Neuropathy where my nerves are damaged in my feet. But this is also starting to improve.

My folate is still on the low side, even though I take folic acid with every injection, which I find odd.

I am on a pain management course at local pain clinic over next 10wks & a few there have fibromyalgia, after talking to them, a lot of their symptoms sound familiar to PA!??

I really hope you get the help & your doctor looks into everything further for you. It can be so frustrating & I was lucky to find a good Dr.

Good luck.

[Nackapan in reply to Ritchie1268]

Hope the pain clinic helps you.

My family member found it very good.

At that stage the diagnosis was fibromyalgia. I think a blanket term. Most on to get clearer diagnosis eventually of a few things.

[Ritchie1268 in reply to Nackapan]

Thanks Nackapan. Finding it interesting, especially looking forward to the mindfulness part.

Those with fibromyalgia said they were made to feel like hypocondriacs & told it was all in their heads before diagnosed, I remember thinking I know that feeling!!

[ww1960 in reply to Ritchie1268]

Hi , I noticed you said you take your folate when you inject. Does that mean that you don’t take it every day ? 🤷‍♀️

[Ritchie1268 in reply to ww1960]

Hi.

I tried taking it daily but got upset stomach.

I still get upset stomach but not as much, so I'm still confused!?!

[ww1960 in reply to Ritchie1268]

Thanks. I take it every day and thought maybe I was doing it wrong ? I’m confused too 😂🤷‍♀️

[Ritchie1268 in reply to ww1960]

😂

I was told to take 400ug daily. When it didn't agree with me I was told to take it every other day when I self inject. I would've thought my levels would be higher now. Waiting on results of FBC to see if MA has now gone & if Folate level has risen since last count, so we'll see 👍

[ww1960 in reply to Ritchie1268]

Fingers crossed for you

[Ritchie1268 in reply to ww1960]

Thank you. Hope all goes well for you too

[clivealive Forum Support in reply to Bekg2k]

Testing serum B12 levels is a waste of money once injections have started as they are bound to be high. This should not be a cause for alarm as you cannot "overdose" on it as any excess is excreted via your urine.

Your B12 deficiency may well be caused by an absorption problem.

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

[Gambit62 Administrator]

Given your diet results above are indicative of an advanced absorption problem. The fact that your symptoms improved suggests that B12 was part of the problem, though the low folate won't have helped either.

Suggest you keep a diary of symptoms and try to persuade your GP to follow that as a guide to how frequently you need injections though the fact that hydroxocobalamin is only licensed for use as maintenances every 2 months can cause problems - it doesn't reflect safety but the vagaries of the way licensing is driven by manufacturers.

[Bekg2k]

Thankyou for everyone's advice I recently requested a copy of my medical records for other reasons and it appears that every time I've had a blood test and they've checked the b12 and folate levels they've always been low (theres been lots of blood tests!) I'm talking going back nearly 20 years really angry that it's never been picked up before...hopefully maybe I'm getting closer to a resolution

[Nackapan in reply to Bekg2k]

I would be angry too.

Just move on from today . Point out low levels on record. Point out everyone should be treated as an individual.

My gp actually said that eventually when I pushed for more injections. Not everyone can fit the

T C

[Nackapan]

Regime set . (Sent too quickly! ) ☺

[Bekg2k]

Thank you for your advice will try and make a face to face appointment to discuss what's going on...would just like to feel well again x

[Marz]

Often people with such poor results can also suffer with low thyroid - which in turn can be the cause of low stomach acid causing poor absorption of nutrients. Fibro can be linked to low T3 - the active thyroid hormone - rarely tested in the NHS - sigh.

Has your VitD been tested ? Glad you have obtained your results so you can monitor your progress from now on and check what has been missed.

I am a member of Thyroid UK here on HU. I was diagnosed with Fibro in 2000 in the UK & Hashimotos in 2005 in Greece. I suffer a B12 issue due to surgery over 45 years ago. There is a member on Thyroid UK who has created a website linking IBS and other conditions with thyroid issues. The brain has first call on circulating T3 followed by the gut/immune system so if levels are low then there simply is not enough T3 to go around. Like driving from London to Bristol on a gallon of petrol !

[Bekg2k in reply to Marz]

Hi thanks for your reply...I believe the only thyroid type blood tests I've ever had are the serum tsh levels. Recently mine was 0.87 (range 0.3-5) but was last tested 5 years ago and it was 1.18. No further testing done I suspect because of this x

[Marz in reply to Bekg2k]

Yes I am sure you are right. Medics today are obsessed with the TSH test - which of course is a Pituitary hormone and tells you so very little about how the thyroid is performing . The FT4 and FT3 results are also needed along with the anti-bodies TPO and Tg to rule out Hashimotos. The complete set of tests are very rarely done and so people remain undiagnosed needing other drugs ...

Private Testing available through Thyroid UK - click onto About Testing in the link below. Special Offers with Medichecks on Thursdays.

thyroiduk.org

Maybe worth popping across to Thyroid UK Forum to read more patient to patient tips on testing. Many of us frequent both the PAS Forum and Thyroid UK ...