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!
Shaking, muscle weakness, fatigue, etc - Pernicious Anaemi...
Shaking, muscle weakness, fatigue, etc
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maybe say to nurse clearly that you withdraw your consent for B12 to be tested and ask nurse to make a note that you've withdrawn your consent for b12 to be tested.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.
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.
Thanks for that - I'll have a look at those links. Much appreciated!
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.
Thanks for that.
Type two diabetes can give exactly the same symptoms and should be ruled out by an Hba1c test of a blood sample. This gives the average blood glucose level for the preceding 3 months. Type two can be rapidly put into remission by a very heavy diet using specially designed milk shakes such as SlimFast in just a few months. This should only be done with the supervision of a medic - best being a diabetic specialist nurse.
Have been back to doctors today with symptoms getting worse. As have previously been diagnosed with vestibular migraine, they think this could be a contributing factor so have medication now for that. Also suggested taking B1 and B6 supplements and says have added some extra tests to the blood taken today so will have to wait and sees
Hi Lynne, Some of your symptoms are classic indications of B12 deficiency. Using this forum you will be aware that many B12x patients are undertreated by physicians. Some patients find they have to take control of their own treatment if there is insufficient support from their GP.Perhaps you would consider increasing your B12 injections frequency, as B12 does not have any side effects.
Good luck
Dylfan
Weakness and fatigue after nearly 3 years of injections
PA - linked with fatigue syndrome ?
Is this possible
Is it helpful to try to 'fight' fatigue?
