Looking for advice

[Teachtheteach]

Hi everyone.

New to pernicious anemia and still trying to figure out what is going on. It all started with mouth sores and memory fog a year ago and I feel like after almost a year on b12 shots, new symptoms are appearing.

has anyone else experienced constant arm fatigue? Just feeling exhausted from washing your hair? But then it goes away as soon as you put your arms down, but comes back as soon as you raise them again?

I’ve also started experiencing tingling in my hands which I’ve never had before.

At this point I just want to know if this js possible, or if there is something else I should be investigating.

I’m also looking to see if anyone has found a specialist that knows about pernicious anemia? I feel like I have been to see so many doctors but not one who knows in-depth details.

Thanks in advance.

[wedgewood]

The only one I know of and have heard excellent feedback about , is Doctor Andrew Klein , who is a Consultant Anaesthetist at Nuffield Health and Papworth Hospital, Cambridge. He has a special interest in anaemia including Pernicious Anaemia , and treats patients at the Cambridge Iron Clinic Nuffield Hospital.

You are right , most doctors have very little knowledge on Pernicious Anaemia. This means that we very often just have to help and treat ourselves . ( we all are obliged to self -inject to keep well .. Every one is different, and require different regularities of injections ! P.A is one of over 100 autoimmune conditions , which rarely come alone . … ( I have 3!)

I suggest you get one of our founders books on P.A. (on Amazon , Martyn Hooper ) and have a good read ! We are always here for you.

[Dislancas69]

I agree with wedge wood who is so knowledgeable on this forum i have recently joined and have watched all of dr Andrew klein have also watched lots about P.E and b12 on you tube even wrote in homosycteine as these are now important to me being just slightly more knowing is helping me to continue my uphill fight… sad there is no real P.E specialist even thought it’s not a new thing

[Nackapan]

I forgot about that .It's gone now .

No idea when thst stopped.

I'm 6 years in.

My daughter had her cut very short as still cant use a hair dryer.

There must be a reason or may take more exertion than we think with chronic fatigue .

Exhaustion also affects digestion.

I remember food just sitting there with nausea waiting to digest food.

[Bellabab]

Yes type two diabetes has almost identical symptoms to B12 efficiency. A blood test to measure the levels of HbA1C will give you your average blood sugar level over the last 3 months. More about it here:

nhs.uk/conditions/high-bloo...

[boisland]

Teachtheteach : New symptoms of B12D can/will appear when patient is not receiving enough B12 . When on injections you must have enough B12 to cease existing symptoms, heal prior damage & for daily functions. How often are you injecting ? What do your iron levels reflect ?. What about you folate level. Folate & B12 need each other to convert properly in a manner our body can use.

[Teachtheteach in reply to boisland]

This is very helpful. Whenever I get tested, they test all of the levels which seem to come back normal range. I do notice that the levels Drop pretty drastically between each shot. One of the doctors did suggest that I am possibly not getting enough And I’m hoping that that’s the case. When I first discovered the deficiency, I was way below the normal range. I was getting monthly shot, and I noticed that most of the symptoms went away. However, the arm fatigue never went away, and the new numbness in my hand started recently. I have only recently started to get shots twice a month, but still cannot figure out why I am developing new symptoms.

[boisland in reply to Teachtheteach]

Teachtheteach Serum levels of B12, regardless of results being normal, high or extremely high does NOT correlate to "sufficiency" for those with this condition. Essentially that means you "cannot" use blood tests to monitor B12 treatment, unless low – must only go by our symptoms. Very few doctors have knowledge of this condition, hence it is a good thing you are self-educating. If you are able to trial an increase in injections & the new symptoms subside that would point towards a lack of B12 as the issue. You stated your levels dropped drastically between injections, in my experience when this happened to myself, I requested more frequent injections. Below link is an interview with Dr Kline. If you do connect w/ him I believe it is out of pocket. youtube.com/watch?v=Uu_WBUN...(Not working as expected?)

[PlatypusProfit8077]

Oh I struggled so much with an awful level of exhaustion when raising my arms - washing my hair or hanging out washing became a workout that I didn’t want.

It subsided eventually when I started managing my injections myself (every other day).

I have noticed a link between my ferritin levels and my B12 jabs being efficient/sufficient. My ferritin dropped 30 points very quickly into “officially iron deficient” levels and I was having new and old symptoms popping back up - the fatigue, muscle twitches, nerves felt like they were having issues again. An iron infusion really helped