Need advice on who should manage my care!

[peskygnat]

I would like input on what type of specialist is most effective in managing your care. I’m getting passed around like a hot potato!

[Foggyme Administrator]

Hi Peskygnat. In short...

A GP should manage primary care (in this case diagnose and treat PA or B12 deficiency (from whatever cause, which may be other than PA).

If there are ongoing symtpoms that do not resolve with B12 injections, it would be usual to refer to a specialist for further investigations and advice. Because B12 deficiency can have different affects on the body, referral depends on the particular symptoms that are an issue. So...

For gastric symtpoms - referral to a gastroenterologist

For neurogical symtpoms - referral to a neurologist

For ongoing issues with macrocytic anaemia (enlarged red blood cells) or other blood work anomalies - referral to a haematologist

Has to be said that even referral to a specialist does not always bring a good outcome because many of them know little about pernicious anaemia or B12 deficiency.

So...first place for treatment - GP (in the U.K., PA should always be treated with B12 injections - injections are for life). So, like Hidden , unless you,live outside the U.K, wondering why you’re not having B12 injections? Fatigue may be related to under-treated B12 deficiency (tablets and sublinguals don't work for many people with PA).

Also worth considering if your folate, ferritin and vitamin D levels are okay. Those with PA often have other absorption issues and low or deficient levels in any of these can make you feel quite ill.

Another possibility is that you also have another underlying autoimmune condition (they do tend to travel in clusters) so seeing a rheumatologist for Investigations is a very good idea.

Key to getting better is getting sufficient B12, Investigating the possibility of other underlying conditions (particularly autoimmune), and getting appropriate (and simulateneous) treatment for any identified conditions.

And, of course, ensuring that your under active thyroid is being medicated appropriately (the thyroid forum her on HU can advise about that).

Can you get better and live to a ripe old age - yes, you certainly can - but it can take time to get everything sorted out and treated appropriately. So don't despair...and be persistent In your search for answers...and solutions 😉😀.

Good luck.

[Vitb in reply to Foggyme]

Thank you for your post, it was helpful to me.

I was diagnosed with pa last November and have been on 1 x 3 monthly vit b12 injections since.

After feeling really awful, so tired , fuzzy headed affecting my concentration at work etc etc

I went to see my GP , 24th Dec, to increase injections to every 2 months.

I also explained about what I know from this PA group about frequency etc of injections , recommended treatment , skewed blood test results etc etc. She did listen & respected what I was saying & said she had recent training on this . She is not ruling out I may need 2 x month jabs but wants to make further investigations.

I had repeat blood tests which came back fine .

I am returning to see the nurse, 17 Jan, for other blood tests (thyroid etc).

GP agreed to test me for hypolori infection via stool sample.

She also referred me to a Heamatologist.

I would be interested in your opinion ?

Thanks

[peskygnat in reply to Foggyme]

I am taking B12 injections! I took them faithfully for years. My previous dr never said I had PA. Just B12 deficiency. My new dr stopped the shots a few months ago as my B12 levels were off the charts good! I was feeling awful before that took place. My B12 was between 1,000-2,000 prior to stopping injections. The first B12 level after missing 1-2 months of shots was 917. Still well within the “ normal” range. I started the sublingual on my own as I was feeling so crummy & my new dr did not attribute my fatigue to B12 issues. My CBC was fine. She never did the rest of the labs...ferritin, folate, & TIBC. PA was not on her radar. Not mine! But after the gastroenterologist said pernicious anemia, & the endocrinologist agreed with that, my new dr started the shots up again. Lots of confusion on who was managing my care! Gastro sent me to endo. Endo sent me to rheumatology. They sent me to primary but suggested maybe hematology. Although PA is autoimmune along with hypothyroid, rheumatology said hematology was better to manage PA. Rheumatology has worked me up for everything!!! Nothing conclusive! Just an VERY high ANA. I’ve had a positive ANA for a few years. But all other testing has been ok! Now I I also have borderline antiphospholipid, but I’m not sure how that ties into all of this other stuff, or if it even does. Sooo frustrating! I just want to feel like my old, high energy, type A crazy lady again! Primary also suggested hematology. So that is where I am & that is who ordered the iron infusions. Just so much to keep track of with labs, other testing, meds, etc. I am also going back to ophthalmology. Blurred vision is right up there with ringing ears! Dry eyes. Optometrist ordered Restasis drops after OTC drops, 3 different types, did nothing. These prescription gtts are helping with the dryness. If I can get a handle & see SOME improvement with the fatigue, I’d be SOOO very happy!

I have NEVER had health issues. An accident in 2010 seemed to be the start of all of this! I really believe that is what triggered all of this autoimmune disaster. It’s just been one problem after the next. I’m thinking my body has just revolted to all of the stress placed upon it in a very big, ugly way.

I have been persistent. This has been more than 9 years of seeking answers. These last 2-3 years have been the absolute worst with not a sign of improvement. I continue down the path TRYING to find the person who will put it all together & figure things out so that I can feel like I’m living life again!

Thanks to all who post. Knowing one is not alone, NOT GOING INSANE, & hearing suggestions that could lead to a solution is helpful beyond words!!!