I’ve managed to get an appointment and am just sitting in waiting room
About to ask gp for b12 injections.
I’m so scared of not being heard again. The tremors are the worst I’ve ever had.
Back story is I was given 6 b12 shots 3 years ago. I have an underactive thyroid and recently found out I have Hashimotos (via a private test as gp refused).
If you have Hashimotos you are likely to be B12 deficient and may be in need of supplementation
I am not a medically trained person
I wish you well
Thank you Clive. The dr said I am ok. She is going to ask a haematologist and neurologist for advice.
I have Pernicious Anaemia, hypothyroidism, alopecia areata and vitiligo.
I have recovered the majority of my health through getting liothyronine (T3 alone) prescribed.
I used to have an injection every three monthls for pernicious anaemia. but GP has stated that I can have as many B12 injections as I feel I need. I now have a monthly B12 injection.
My mother had pernicious anaemia too. Unfortunately after a number of years of having a 3 monthly B12 injection, GP told her that her blood results were good and she should not have any more B12 injections.
That decision by GP caused her early demise as she developed stomach cancer and I believe it was due to the withdrawal of the B12 injections.
Hi Shaws. Thank you for your reply. Do you find your dr to be helpful? I’ve gone through about half a dozen at my practice for thyroid issues and just get nowhere. It is beyond frustrating to be on this journey
I am sorry to hear of your mother’s difficulties.
The new doctor at my surgery is excellent whereas the previous one was useless with regard to anything to do with the thyroid gland.
The new GP has also increased T3 dose.
I also get a B12 injection monthly instead of 3 monthly.
That’s amazing. I don’t know if changing practice would make a difference or it will just be the same.
Might be worth a try but no guarantee of better treatment.
Easy to change GPs.
nhs.uk/nhs-services/gps/how...
Might be worth looking up reviews of various GP surgeries in your area.
You will have to resign yourself to the fact that the medical profession has a very poor understanding of Pernicious Anaemia / B12 deficiency . Patients on this forum are forced to self-inject Vitamin 12 to keep well.
You need your B12 injections to be reinstated . After such a gap you will need to start with loading doses again . Hashimotos is an autoimmune condition often a “ companion “ with P.A. An autoimmune condition rarely occurs alone . Best of luck with your GP
Thank you wedgewood. It’s a great disappointment but I’m slowly adjusting. I was thinking of maybe doing the shots myself if I don’t get anywhere. Apparently my Intrinsic Factor was checked and negative back in 2020.
I’m glad to have found this and the thyroid forum. I’d be completely lost otherwise.
make sure to get your parietal cell antibodies tested, if that is positive it also indicates PA. I was originally IFA negative as well and my docs mistakenly thought that meant I didn’t have PA and they never bothered checking my parietal cell antibodies until years later.
I just feel scared to go and ask for anything now. They make me feel like a hypochondriac.
Can you take someone supportive with you? Preferably someone who has read about B12 deficiency.
not really got anyone who fits that role tbh. I think I’d rather just buy the b12
But doctors should know that about 50% of Pernicious Anaemia patients test negative to the Intrinsic Factor Antibody test . Those antibodies can appear and disappear. P.A. patients can be tested a few times before the antibodies appear.
The main criteria are the symptoms you have . They need to be treated with B12 injections. Do come on the forum and be assured that we will help you .
Thank you wedgewood. I’m a single Mam and feel that this forum is the only place I’m heard. I’m sick of battling with tiredness and shakiness amongst other things. Day to day tasks have become such a challenge.
I appreciate this greatly
There is a charity called Home Start that support families with children under 5.
If your children are older and helping you then there may be aYoung Carers service in your area who can support them.
carersuk.org/help-and-advic...
Thank you for this. My daughter doesn’t do much at all being a teenager. I work full time so maybe need to bite the bullet and get a cleaner temporarily.
Hi,
Welcome to the forum.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Maybe show the GP this flowchart which discusses Antibody Negative PA.
stichtingb12tekort.nl/engli...
and this article "Testing for PA"
pernicious-anaemia-society....
B12 books I found useful
Some of the stories may have upsetting details.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
Some treatment info in book needs updating.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
UK guidance suggests that people who are symptomatic for B12 deficiency should be treated even if serum B12 is within normal range.
NICE (National Institute for Health and Care Excellence) B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.
b12deficiency.info/your-ser...
Unhappy with Treatment (UK info)?
How to write letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
I think putting queries about treatment/diagnosis into a letter makes it harder to ignore.
Local B12 deficiency guidelines
I suggest you track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) in England or Health Board Wales/Scotland.
CCGs (Clinical Commissioning Boards) were replaced by ICBs in England in 2022.
If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not as helpful as they should be.
I hope you are not in the UK area discussed below.
b12deficiency.info/gloucest...
Many of us have met health professionals who do not understand B12 deficiency so it's helpful to read about it in case you meet one of the ignorant ones.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Some UK forum members here turn to self treatment when NHS treatment is not enough.
Some get extra B12 injections from a private GP or beauty salons, some try high dose oral B12 although this does not work for some and some as a last resort turn to self injection.
I'm not medically trained.
There's a lot more information I could pass to you.
Just let me know if you want me to post more.
Hi and thank you so much for this.
I am having a moment where I’m too exhausted to keep requesting things from gp. On thé letter to the haematologist she asked “would there be any benefits in restarting b12 injections, other than possibly a psychological one”. I may be being a little over sensitive but I thought this was a bit rude.
I don’t know whether my symptoms are b12 related or something totally different. I’m unsure if I have pa or not. I naively thought this would be more straight forward than the thyroid saga.
Thanks again.
omg yes I agree that was very rude of the hematologist, so sorry you’ve had such terrible luck with doctors
This is the reply from haematology
This is the reply from neurologist Sleepybunny wedgewood Purplegirl2 shaws clivealive
The reply from haematologist is above. I really respects your opinions. Thank you.
I dont agree with their statement that tremors are not typical. Neither does the available medical literature:
"Both adults and infants deficient in vitamin B12 may present with chorea, tremor, myoclonus, Parkinsonism, dystonia, or a combination of these, which may precede diagnosis or become apparent only a few days after parenteral replacement therapy has begun."
pubmed.ncbi.nlm.nih.gov/248...
Anecdotally, I developed intention tremor likely due to severe neurological damage to my hands during the deficiency period which improved slowly but substantially with treatment. B12 deficiency causes damage to the myelin sheath. Unprotected nerves are then easily damaged which may produce motor or sensory dysfunction.
Thank you for your reply Technoid. When so many professionals are telling me that I’m wrong I do start to doubt myself. At this point I do not want to go back to gp again.
I’m so glad to hear you recovered from it. As you’ll know it’s such a horrible feeling.
I have so much appreciation for everyone here.
I came to understand that B12 deficiency is not just difficult to diagnose but that many medical professionals have serious misconceptions about B12 deficiency symptoms, diagnosis, dosage, treatment and virtually everything related to B12. I pretty much assume they will make false/ignorant statements until they prove otherwise.
I have great respect for specialist knowledge and research in the field of B12 but the average GP or even non-B12 specialist is immediately out of their depth when they begin to discuss B12. I wouldnt mind this as much but for the fact that they confidently express and defend provably false and incorrect statements without a shadow of doubt in their minds. This behaviour more or less annihilated my trust in general medical physicians or even non-B12 specialists giving their opinion on the subject.
I don't agree with that statement either.
There are forum members here Underactiveclare who have experienced tremors including myself.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
I was forced to treat myself when NHS refused to treat me.
Thank you for your reply sleepybunny. Do you do the injections yourself?
I tried many ways to get more B12.
Some UK forum members get B12 injections from private GPs or beauty salons (expensive), some try high dose oral B12 but this doesn't work for some...I didn't find it effective although it helped a little bit. Some as a last resort turn to self injection.
I also tried the b12 drops but didn’t see any difference. I will have a look around for places to buy the injections. Thank you SB
Hi Underactiveclare, i sent you a PM, look under the "Chat" tab in your healthunlocked menu.
Best wishes.
I think I’m pretty much done with the gp. Between b12 and my thyroid they have been so far off the mark. They’ve prescribed me antidepressants and anti anxiety meds without any issue but I don’t believe I’ve needed them. It’s worrying how wrong they can get it. I do accept that they can’t specialise in everything but I feel that at 40 I am more of the expert with my body.
Thank you so much for your support and taking the time to write back.
Thread I started about Patient Safety, has useful links for those having difficult health experiences in UK.
healthunlocked.com/pasoc/po...
More about wrong ideas some health professionals have about B12 deficiency
There may be some details that could be upsetting.
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
B12 article from Mayo Clinic in US
This is aimed at researchers and health professionals. It's one of the best articles about B12 deficiency I have read (personal opinion) but may have some upsetting details.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
just got a reply from dr so thought I’d share. I really appreciate your thoughts.
Informing your GP
Update following GP appointment. 1 Month down the line.
GP comments about B12 levels after injections started?
GP appointment
