Shaking, muscle weakness, fatigue, etc

[Lynne17]

HiI was diagnosed with B12 deficiency 5 years ago and have been having 8 weekly injections at my GP. However, recently I have noticed some horrible symptoms returning plus others that are concerning me such as inability to walk when I get up (legs feel like jelly), shaking and the usual b12 ones such as tingly feet, fatigue, etc. I had my usual B12 injection 3 weeks ago but didn't feel any better after it. Have seen a nurse practitioner at my surgery who says no point in testing my b12 and am I sure that I'm not overdoing it at my age (57) - they have booked me I for blood tests for diabetes, iron and thyroid. Has anybody else had this happen and could it be a B12 problem as am feeling a bit scared and that no-one is listening to me. Thanks in advance!

[Sleepybunny]

Hi,

I'm sorry to read you're having a hard time.

Some people find their need for B12 varies at different times in their life.

I know several people with B12 deficiency who've found that their need for B12 increases as they get older...I've found this myself.

Some forum members report that stress and exercise increases their need for B12.

"blood tests for diabetes, iron and thyroid."

Forum members often report deficiencies in folate, Vitamin D and iron as well as B12.

Might be worth putting any thyroid results on Thyroid UK forum on HU along with an outline of your story.

UK GPs often only test TSH when checking thyroid but there are other useful thyroid tests.

thyroiduk.org/testing/thyro...

UK GPs often only test ferritin but there are other iron tests that can be done.

labtestsonline.org.uk/tests...

Symptoms Diary

Are you keeping a symptoms diary?

This could be useful evidence of improvement or deterioration in symptoms to show your doctors.

Maybe track up to ten symptoms and score severity every day or weekly.

"Have seen a nurse practitioner at my surgery who says no point in testing my b12 "

Glad to see that your nurse is well informed.

Testing B12 During Treatment

pernicious-anaemia-society....

When you have your tests done, I suggest double checking that B12 is not being tested.

Some forum members have had their B12 injections stopped when serum b12 test has shown above the range results.

If it's on the list to be tested and you don't want it to be tested then maybe say to nurse clearly that you withdraw your consent for B12 to be tested and ask nurse to make a note that you've withdrawn your consent for b12 to be tested.

Patient Association article about Informed Consent

patients-association.org.uk...

"that no-one is listening to me."

If you have a PA (Pernicious Anaemia) diagnosis or suspect you have PA, have you considered joining and talking to PAS (Pernicious Anaemia Society)?

You do not need a PA diagnosis to join.

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

There are PAS support groups in UK. Most meet online.

pernicious-anaemia-society....

Lots of useful leaflets on PAS website.

pernicious-anaemia-society....

B12info.com website has lots of useful info.

b12info.com/

Some UK forum members treat themselves when NHS treatment is not enough for them.

Some get extra B12 injections privately, some try high dose oral B12 (1000mcg or higher) but this doesn't work for everyone and some as a last resort try self injection (SI).

I left some detailed replies on this thread eg suggestions of UK B12 documents to read, B12 websites, links for those struggling to get adequate treatment etc.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.

[Lynne17 in reply to Sleepybunny]

Thanks for that - I'll have a look at those links. Much appreciated!

[Leothelion]

Hi Lynne, sorry to hear about your symptoms, I can relate to the weak legs like jelly too, I’ve spoken to a B12 specialist and he had said to do eod for 3 months or more, I’ve been like this a over a year now, I’ve seen 5 drs at mt surgery and was not getting anywhere, hence seeing a private consultant, I’m also Hypothyroid too, never had a diagnosis of PA until I saw this new consultant a few weeks ago, something that I was suspecting, I was already getting B12 at the surgery 4 weekly, s, the only thing I can think of was I had covid a year ago, then the weak legs a week before, hope you find a answer and get relevant tests.