Just diagnosed

[heartofstone]

Hello all.

I was just diagnosed with pernicious anemia that is a result of autoimmune atrophic gastritis (also just diagnosed).

Currently just taking high doses of dissolvable B12 tablets daily, as well as vitamin D as I was also severely deficient in this (probably tied to my gastric disease).

I'm in my mid-30's. I am trying to come to terms with all of this because I have a lot of plans of what I want to do in the next several years, all of which require a lot of ambition and energy and I lack so much of both And it appears (at least at the moment) that I may not even get the energy to do those things. I hope I am wrong.

Thankfully, the high dose B12 tablets have helped a little bit (i have been taking them religiously every day since this summer) especially in terms of mood and behavior. But I have yet to see real improvement with energy. I have huge chunks of time during each day where I feel I can't do anything other than sit around because doing stuff is just too tiring and I am in a constant brain fog state.

There are no support groups for people like me in my city, sadly.

So anyway, thanks for reading. And I'm glad to have found that there is a community of other B12 deficiency sufferers.

[clivealive Forum Support]

Hi heartofstone are you in the U.K?

If you have a definite diagnosis of Pernicious Anaemia you really ought to be having Vitamin B12 Injections and it is not surprising that you are feeling little benefit from the subliguals.

Do you know whether your Folate level was tested?

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.

[heartofstone in reply to clivealive]

Hi clivealive, thanks for the response.

I don't live in the UK. I live in the US (NYC). I saw in my initial blood test done over the summer my serum folate level was normal.

I think I would like to try B12 injections as I am sick and tired of feeling this sick and tired! I think because I told them (my main doctor) that I thought the B12 was helping me with my mood and behavior, they think it's fine to leave me on it for now.

I feel like not many doctors here know much about it. I go to three doctors right now to help me figure out my health issues, and two of them don't sound as knowledgable about this as the third one (my rheumatologist, no surprise there).

I guess I'll go ahead and ask my main doctor to prescribe it for me.

[clivealive Forum Support in reply to heartofstone]

If you can spare the time watch this video by a fellow U.S countrywoman

youtube.com/watch?v=OvMxJ6G...(Not working as expected?)

[heartofstone in reply to clivealive]

Ah I click on it and it says unavailable. I did find it on YouTube and it works there. I really have nothing to do but lay here and be miserable so I have the time to watch it. 😆 Thanks for posting this!

[clivealive Forum Support in reply to heartofstone]

I am sorry my link didn't work - probably because I'm in the U.K. However I hope you enjoy the film.

As others have said on here you really do need to have the B12 injected if you have P.A.

Look after yourself

[wedgewood]

You have come to the right place for help and support ! As clivealive says having a diagnosis of PA , means that you should have had loading doses of B12 injections ( 6 over 2weeks) Then an injection of B12 every 2 months FOR LIFE Sometimes it’s difficult to get the injections more often than that , so many of us have to self-inject . The tablets you take will not help you properly . You should be having injections So you must ask your GP to start you on them straightaway !

. It’s also important to have good quantities of vitamin B9 - it’s called folate in green leafy veg and folic acid in tablet form . B9 works with B12 .

Are you in the U.K.? There are support groups in various regions if you are . Best wishes .

[heartofstone in reply to wedgewood]

Hi wedgewood, thanks for replying! I will add B9 to my growing list of vitamins I have to take daily. Thanks for the suggestion.

I'm definitely glad I found this forum as I think most fellow PA sufferers here would know so much more about PA than the doctors here in the States 😏 Sadly I doubt I'm a very unique case; I'm sure there are many others out there chronically ill, waiting many years to find out what's wrong, as their doctors don't know much about it and misdiagnose them.

[Leils in reply to heartofstone]

For energy also consider B6 and coenzyme Q10

[heartofstone in reply to Leils]

Thank you for the suggestion. 🙂

[wedgewood in reply to heartofstone]

If you take a modest supplement of folic acid -say400mcg - that will suffice

[heartofstone in reply to wedgewood]

Thanks again!

[willijf]

Hello! I am also living in the US in Chicago. I was diagnosed about 5 years ago when I was in my late 40s. The only doctor who was able to figure it all out was my hematologist. He gave me loading dose injections for 5 days and then a B12 injection once a month. Since then, I have requested a B12 injection every 3 weeks and he has been agreeable to this. Trust me, you will feel much better when you start getting the injections! The tablets did absolutely nothing for me. You really do need injections. Good luck to you!

[heartofstone in reply to willijf]

I see so many people getting diagnosed in their 40s and 50s so I feel actually fortunate that I was lucky enough to encounter a doctor who knows what is going on with me! (I'm 36.)

And just hearing so many people say that the injections did more for them than high dose tablets is reassuring. I really feel no improvement... past few days I can barely eat and my ability to regulate temperature is non existent so I'm constantly in bed rolled up in blankets. I want to feel better sooooo badly. I will beg for injections at this point if I have to but if my regular doctor won't prescribe it I'll just turn to my rheumatologist.

Thanks for replying and for sharing your experience. 🙂

[Ryaan]

Don’t forget to get your Ferritin and Folate checked as they work together with B12.

You can google low Folate and Ferritin symptoms.

Vitamin D does greatly affect your mood also.

But at least you’re on the right track to recovery, it does take a few months but you’ll surely get there.

Hope you feel better soon.

[heartofstone in reply to Ryaan]

Hi Ryaan, thank you for your response.

I'm definitely eager (impatient) to start feeling better. The longer I stay this unwell the deeper into depression I fall...😫

[Nackapan]

I agree with all of the above.

Hope you get injections soon. T care

[heartofstone in reply to Nackapan]

Hi Nackapan, and thank you. 🙂

[alamagpa]

By "dissolvable," I infer you mean sublingual. See posts on this site re: efficacy of sublingual B-12 tablet supplementation. My experience as a patient (not a doctor) is that sublingual tablets are helpful only as a supplement to injections.

[heartofstone in reply to alamagpa]

Thank you for this information alamagpa.

Yes I am finally learning that these tablets were never helpful... at least on their own.