Having just found this page, I couldn't be happier. I've been B12 deficient and anemic for around 4months now.
Before my diagnosis, I was under a lot of stress and not eating well at all! I felt myself getting more run down than I've ever been - fatigued, mouth ulcers for the first time, constant low level nausea, and most notably DIZZINESS/LIGHTHEADEDNESS!
I was put on iron supplements and 6x B12 injections. I felt an improvement after the shot - the iron tablets I find make me feel queasy bit I persevered regardless.
However, 4months after diagnosis and 2 months since finishing the B12 shots, I'm still suffering from light-headedness/diziness, fatigue and occasional nausea. My bloods are supposedly "fine" bit I couldn't feel further from it.
I just wanted to share my story and reach out to any one who may have any suggestions - should I feel more of an improvement by now? Should I ask to go back on B12 shots? And is there anything I can do to help speed up recovery?
I've improved my diet and have left the job that was causing the stress but still months later feel battle weary.
Thanks in advance,
Keeping my head up,
TheB12Sharps
Written by
TheBee1Sharps
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I had my bloods taken again about 2weeks ago and told my iron levels were "fine" - I still need to follow up on actual levels.
I have no more B12 shots scheduled as I was prescribed a once off prescription of 6x injections that were administered twice weekly. I finished those in August and haven't had one since but recently I have felt myself regressing to where I was before my diagnosis, albeit not quite as bad - I'm wondering should I be getting more B12 - I read that the usual treatment is one a month after initial treatment?
If in the UK you have hydroxocobalamin. Loading doses are 6. If neurological symptoms persist every other day until no further improvement
Csn be reviewed afyer 3 weeks. Then every 2-3 months. Or more freluent if you can get them. It's wherefore the cause is known. If an absorbancy problem they ate needed for life. I've been told that . I have not got a diagnosis of PA. But whilst knows. ..
If your symptoms are returning yes you need more b12
I'm in Ireland so I'm not sure if the system is different but my GP seemed content on giving me just the 6 injections without follow up but while I felt like I was improving, recently I've felt the same problems returning - stomach upset, nausea, muscle stiffness.
Given that my gp seemed happy I was unsure as to whether it was just a waiting game, but it does seem like I need more. I've been taking zinc and magnesium as well as iron and vit C but the B12 seems to be the only thing that makes a noticeable difference.
Have you also had your folate cheked? It shouldn't be much different in Ireland as I assume hydroxocobalamin injections used. G.Ps are not well versed on B12 /PA.
Ask them to read bnf guidelines. I did that. You know your body. Make a list of symptoms . Nopting what improved or went away . And what is returning. What was the reason for loading doses?
Thanks for all the help - I don't know whether my folate was checked but I do know that I was given hydroxocobalamin.
As for a reason, I wasn't given much of one apart from my levels were very low and this was the prescription. I was pretty ignorant about B12 deficiency and PA in general until this started happening so I just trusted my GP that this would be an easy fix - have I learned the hard way!
Since then, I've been trying to educate myself about it all but have been finding it hard to get much information beyond basic definition - on top of this, questioning whether my symptoms were even related because my bloods are "fine" and I feel like I've been left out in the cold with my symptoms.
This page has been an incredible help! And I appreciate everything you and everyone else in the community is saying! So thank you!
Felt a difference after the first one but then after a few days, the dizziness would come back. Then when I got my period, I felt like I'd been hit by a bus - inspite of the fact my GP kept insisting that my period must be heavy because of anemia but it really wasn't. Very light and un-noteworthy apart from the fact I was so tired, I didn't get out of bed.
I then kept taking the b12 and energy levels and cognitive sharpness definitely improved, but dizziness never truly went. Now it's been 2months since my last injection and fatigue, dizziness, nausea etc. all coming back
Thank you. I’m not sure if anyone else has suggested, but have you thought about getting your own and self medicating? Seems the only issue is that you’re under medicated and need more frequent/recurring injections
I have been researching it - it's actually how I stumbled on this site! I was reluctant at self injecting and buying B12/syringes off the internet but it seems like it's common enough in the community?
Anaemia should now be gone but B12 isn't just about anaemia. B12 is used by a lot of processes that go on in your cells and it is essential for neurological health - it sounds as if your remaining symptoms are neurological rather than haematological. You probably do need B12 injections again.
Suggest your GP look at the following
BCSH guidelines
onlinelibrary.wiley.com/doi... - one message being that B12 absorption problems can't be managed on the basis of Serum B12 results post loading doses (no further testing) ... but it also talks about tests and limitations of the tests that look for the cause of the B12 deficiency and a thing called 'IFAB-negative PA'
Also there is an area on the PAS website specifically meant to help medical professionals improve the diagnosis and treatment of PA/B12 absorption problems
Thank you! This is really helpful! I've been trying to educate myself on this for a while and have been finding it difficult getting information beyond the real basics! Thank you!
I think it was six months after diagnosis that my dizziness started to show marked improvement . Even 18 months on I can still have the odd bout of nausea, mainly first thing in the morning, hang in, it's very early days Bee, wishing you well.
Hearing this means so much! Just knowing it's a normal symptom / experience - I've been in tears with frustration, wondering if I had a serious neurological problem, brain tumour, MS, any random illness Dr Google suggested etc. So your encouragement and experience means a lot, thank you!
Bee I had a genuine smile at your reply. If you ever read any of my old post I wrote the exact words, I was certain I had a brain tumour or MS. My husband said way back then, well you need to tell the doctor. I couldn't tell the doctor or he would have locked me up. To briefly sum it up, It was scary as it was over an 18 months period that I gradually got ill, so at first it was subtle and I thought maybe it was the start of dementia, then it got worse, I though the ground was moving, but knew it was me, I believe now it was a sort of vertigo, but it was very scary. Anyway, it very gradually got less and less, till one day I told my husband that I don't feel dizzy or unstable or think the ground moving this week. I still have flashes of that feeling, and think 'Oh no am I going to faint or have a sudden stroke', it's usually when I am bending too much or too busy. My memory can remain bad at times though, but all in all, not like the early days at all. So hang in, and I wish you well xx
I'm just over a year in and still making progress. Would you mind telling me how often b12 injections work for you? And when you were first diagnosed. Thanks
I'm so thankful for this comment! Thank you so much for sharing your story. It's been a frightening few months not understanding what has been happening to my body while also having people look at me sceptically and say "so.. you just need to take vitamins then?" as though vitamins are just something made up by supplement companies for new age health enthusiasts.
Can I ask what your treatment was like? Would you take the B12 shots often?
Thank you again, I hope you continue to go from strength to strength!
I initially had iron supplements, 5mg folic acid and 12 weekly VitB12 jabs. This has now changed, with the iron supplement stopped by the GP. I am prescribed 5mg folic acid every second day and vitamin B12 jabs are now 8 weekly.
I also supplements myself, I ordered VitB12 from Germany and my hubby administers a jab in between the eight weeks, so I am really getting a jab every 4 weeks (I haven't told my GP that I do this).
I also take a multi vitamin, plus vit D and calcium tablet, most days and oral sublingual VitB12 1000x5 per day. I try to take the oral and sublingual tablets before bed when my stomach is empty, to try and aid absorption. I know research shows we don't absorb a lot of oral VitB12, but I just hope a little extra helps.
It's my own wee planned regime, not sure if it is perfect but I feel well a lot if days, so can't complain.
I do still get tired, 'vertigo', nausea and can have painful legs at night and poor memory at times but so very much better than it was. Manageable symptoms, wishing you all the best Bee xx
I'm glad to hear you've found a routine that eases your symptoms and thank you so much for helping me!
This community seems like a great place and it's because of the helpful advice and patience that you and everyone else on here has shown to me!
My mother has been suffering with low B12 for years - it runs in the family - and she has been brushed off by doctors and gps, told it was psychological and was painted as the hysterical woman complaining about her health when her bloods were "fine." I showed her this site this week and she has a new lease on life knowing she's not alone, not mad and that maybe she can start taking control of her own health. So to you and everyone else, both my mother and I say thanks for everything and keep doing what you're doing!
Aww what a lovely reply, I am no expert, I just try different things and stick with what helps. Of course I may change things as more informed people share things. It will be three years now since I started with noticeable symptoms plus extreme tiredness, which I blamed on my weight (not that I am fat). Then I thought it was old age sneaking in, I'm 62 now. It will be 2 years in January when I was first diagnosed and it is only really the last 6 months things are much better, hope this helps. Wishing you and your mum well, big hugs xx
Make sure that if you were tested for Coeliac in the past....
a) GP did both recommended tests
tTG IgA
and
Total IgA
tTG IgA tests for an antibody to gluten.
Total IgA checks which patients have IgA deficiency as these patients will need alternative tests for Coeliac; their bodies cannot make the antibodies that tTG IgA test looks for even if they have Coeliac disease.
If you were tested for Coeliac in past, did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
One reason for a negative result in tTG IgA test is that patient was not eating enough gluten before test therefore not enough antibodies to gluten were circulating in blood to register a positive result.
6) Any chance of internal parasites eg fish tapeworm? One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell WBC. Eosinophil result can be found with results for Full Blood Count.
7) Are you on any medication that can interfere with B12 ( and/or folate) levels?
Metformin, a diabetes drug can lead to B12 deficiency, so can some anti-epileptic drugs such as gabapentin. There are other drugs that may be associated with an increased risk of B12 and/or folate deficiency.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read " "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Best advice I ever got was to always get copies of all my blood test results.
I learned to do this after being told everything was normal/no action and then finding abnormal and borderline results on the copies. In relation to B12, I look particularly at B12, folate, ferritin (or other iron tests) and Full Blood Count FBC results.
You mention dizziness which is usually considered to be a neurological symptom.
Do you have other neurological symptoms eg tingling, pins and needles, tinnitus, insect crawling sensation, memory problems, balance issues, vertigo, word finding problems, restless legs syndrome, muscle twitches, weakness in limbs, numbness, migraine, tremors plus others (see symptoms lists at top of this post)|?
In UK, patients with B12 deficiency with neuro symptoms are supposed to have more intensive treatment than those without neuro symptoms. See BNF link for UK info.
Perhaps you can get hold of a copy of the Irish Medicines Formulary (IMF) to see what is advised in terms of treatment for B12 deficiency with neurological symptoms, Information may be in section that deals with macrocytic anaemias. Local library may have a copy.
IF neuro symptoms present, have you been referred to
1) a neurologist?
2) a haematologist?
In UK, GPs are advised to seek advice from a haematologist for patients with B12 deficiency where there are neuro symptoms.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Some info in above link may be specific to UK. I feel it is more effective to put queries about treatment into a letter to GP; less likely in my opinion to be ignored but can irritate GP.
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Help for GPs
1) PAS website has section for health professionals
I am sorry to read that your mum is also having difficulties with B12. Does your own GP know that you have a relative with B12 deficiency?
"she has been brushed off by doctors and gps, told it was psychological and was painted as the hysterical woman complaining about her health when her bloods were "fine.""
She's not alone...
I was diagnosed with hypochondria, told my symptoms were psychosomatic or all down to depression. I kept telling them that there was a physical cause for all the symptoms but most of the doctors and specialist would not listen.
Many of us on here get diagnosed with ME/CFS/Fibromyalgia.
Virtually all my symptoms improved when I finally started B12 treatment but so many wasted years.
The situation was complicated by the fact that most of my B12 results were well within normal range despite me having many typical symptoms.
PA (Pernicious Anaemia) can run in families so I hope you have both been tested.
Coeliac disease can also run in families.
I believe that there is sometimes age prejudice and that older patients don't always receive the care they deserve and that too often symptoms are put down to "getting older" when there might actually be a condition present that can be treated.
Many on this forum resort to self treatment due to being unable to get any or enough B12 from their doctors. This to my mind is an absolute last resort though and it is very sad that many are driven to it.
Good luck and I hope you get the treatment you need.
Sorry for the really long post but I remember that when I was trying to find out what was wrong with me, I was desperate for information.
I really wish I'd had access to the info above years ago.
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