I went to the GP with symptoms such as crippling fatigue, low mood, loss of memory and fuzziness and other general menopausal symptoms including what were dreadful night sweats and hot flushes. They took bloods before agreeing to put me on HRT. I had a history of anaemia and similar fatigue the year before so they included B12. Basically B12 came back as 112, there was no HRT patches due to brexit and I commenced my loading doses. Incredibly after this my hot flushes and night sweats completely disappeared, my periods returned, I felt incredible and so full of energy. I never started the HRT at all. After 8 weeks my b12 has gone up to 600 but two weeks before my 3 month injection my symptoms started to return and indeed even a month after the 3 month injection I am struggling with night sweats and hot flushes so severe. I am not due for b 12 for another 2 months...do I self inject or ask for HRT?
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Bella2000
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I can only say for myself of course but menopause does not come out of the blue and start one day and is unrelenting thereafter. Mine built up gradually. The odd hot flush here and there over a couple of years building up to hot flushes every night. The tiredness and grouchiness likewise. Your hormones don’t just stop overnight but wax and wane over the years running up to menopause. So symptoms come and go initially.
I suspect that you coincidentally hit a good patch as far as your hormones are concerned when you started the B12. I’d recommend you reconsider HRT and I’d suggest going to a menopause consultant rather than taking gp advice as they are so much more knowledgeable. If only we had such an expert dedicated to PA!
I also think you need to speak to your GP again about the B12 as you may need more than one injection every 3 months, like so many of us on this forum. Guidelines state injections should be given every 2 or 3 months and also that no further testing of B12 levels is necessary (although if anything a level of 600 seems rather low for someone on B12 injections).
By the way, it’s not brexit to blame for HRT shortages. That would be happening with or without brexit, it’s caused by problems in the supply chain.
You mention symptoms such as memory loss and fuzziness which would usually be considered as neurological and a low B12 result 112 .
In UK, patients with B12 deficiency with neurological symptoms should be on b12 injections more often than every 3 months.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
You appear to have been put on the first pattern when my understanding (I'm not medically trained) is that patients should be on second pattern if neurological symptoms present.
Do you have any other neurological symptoms eg
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, migraine, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
Does your GP have a list of all your symptoms, especially any neurological ones?
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, any other supportive evidence.
Worth mentioning that GP can find treatment info in their BNF book Chapter 9 Section 1.2
Referrals
If neuro symptoms present, have you been referred to
1) a neurologist?
If you see a neurologist, ask them to check your proprioception sense. Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency. Vital that these tests are only done by a doctor due to risk of loss of balance. If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.
2) a haematologist?
NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.
Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists as well as GPs. I just hope you are lucky.
If gut symptoms present, have you been referred to a gastro enterologist?
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori etc.
What does GP think is causing your low B12 levels?
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
As well as being tested for PA, have you been tested for
Coeliac disease?
UK guidelines below recommend that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac, so should anyone who has a first degree relative with Coeliac.
If you were tested in past...
1) Did GP order both recommended tests tTG IgA and Total IgA?
2) Did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
A person with Coeliac disease can have negative results on tTG IgA test if
1) They have IgA deficiency. Total IgA test checks for IgA deficiency.
2) They were not eating enough gluten prior to tests.
People with IgA deficiency will need alternative tests for Coeliac.
Nitrous oxide is in gas and air mix, used in pain relief for labour and sometimes as part of anaesthesia for operations. Nitrous oxide inactivates B12 in the body.
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi or smoked salmon?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell WBC. Eosinophil result can be found on results for Full Blood Count FBC.
If you need to know more then search online for " B12 deficiency parasites"
Some drugs and medications can interfere with B12 levels (and folate levels). For example metformin, a diabetes drug, some PPI drugs such as omeprazole and there are others.
Please discuss this with GP if you have any concerns.
If in UK, I suggest you read all the following documents
"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".
I 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.
Link about "What to do next" if B12 deficiency suspected
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.
3) Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results. It happened to me.
Some parts of UK are using out of date local guidelines on treating B12 deficiency. Worth tracking down your local area guidelines and comparing them with national guidelines eg BNF, BSH and NICE CKS links.
Support
Do you have someone who can go with you to any appointments that might be challenging eg supportive friend or family member? Even better if they have read about B12 deficiency and understand what you are going through.
PAS support groups can offer emotional support and are a great way to find out useful info eg helpful GPs.
My impression is that GPs and specialists are likely to be kinder if a witness is present.
If you're still struggling to get recommended level of treatment in a few weeks then may be worth talking to MP . See MPs website for dates of advice surgeries.
Help for GPs
PAS website has section for health professionals that your GP may find useful
You would need to be a PAS member to print these out.
B12 and Menopause
My theory based on personal experience is that good levels of B12 may delay the onset of the menopause. I have had menopausal symptoms for a while but am at the upper end of the age range for starting the menopause. I have had B12 treatment for several years now.
Of course it could just be genetics in my case rather than exposure to B12.
I searched online for "Menopause B12 deficiency" and found some interesting articles.
Wow thank you for your reply and all the information ! 😊
Unfortunately I never saw the doctor after my results and I think they just referred
me straight away to the nurse for the injections. Obviously my first concern was about the menopause and so I associated it with that. However. I had struggled with all I can describe as swaying or leaning as walking, forgetfulness and overwhelming brain fog ie not being able to organise things in my mind..and some depression anxiety. I think they got a little mixed up between the two and therefore did not get back to me. I will make an appointment though and tell them my story and I have ordered some injections from Germany as we are both nurses and can manage this. I want to rule out B12 as a cause first.
"Unfortunately I never saw the doctor after my results and I think they just referred me straight away to the nurse for the injections"
Most UK GP surgeries have access to online medical records. Details will be on your GP surgery website. You should be able to access records for the period covering diagnosis of low B12 and should be able to see if you had an IFA test (test for PA) and Coeliac tests etc.
If for some reason you can't access records online for the period you want then you could request access by signed formal request letter to practice manager.
Look up GDPR legislation about patients accessing their records.
"I will make an appointment though and tell them my story"
Maybe worth writing a letter to GP if you have queries about treatment/diagnosis.
My understanding is that in UK, letters to GP are supposed to be filed with medical records so are less likely to be ignored than info passed on verbally or on photocopies.
Writing a letter
1)Avoids face to face confrontation with GP if relationship under strain
2)Gives GP time to do their own research if letter reaches them before appointment
3)Gives patient time to think carefully about what they want to ask GP.
Can be difficult to think clearly in an appointment if suffering brain fog.
4)Creates a paper trail in case there is a need for a complaint in future.
See letter writing link in my other post.
"swaying or leaning as walking, forgetfulness and overwhelming brain fog"
The above neuro symptoms can be found on lists of B12 deficiency symptoms (see symptoms lists in my first post). I am not aware of balance issues being a common menopausal symptom although I have read that forgetfulness and brain fog can be menopausal symptoms.
"I want to rule out B12 as a cause first. "
I suggest you think about joining and ringing the Pernicious Anaemia Society. PAS can suggest useful info.
Have you seen a neurologist and haematologist about neuro symptoms and gastro enterologist if you have gut symptoms? Both PA and Coeliac can lead to gut damage which can affect absorption of nutrients eg B12. There are other gut conditions which may affect absorption of B12.
There is a window of opportunity to avoid permanent neurological damage if patient has neuro symptoms associated with B12 deficiency.
If you suspect you are being under treated then it's worth fighting to get adequate treatment. However sometimes the fight to get adequate treatment is so exhausting that people turn to self treatment.
Have you looked up articles about HRT and B12 deficiency?
I would go for the b12 first. And wait to see where you are at. It could otherwise get very confusing.
I started HRT after b12 injections started. Gp truly thought it would help with head aches and hotflushes. Also generally with my brain as estrogen does.
For me I literally had a few days of benefit.
1 Gp thought to come off another thought to up dose. I was on 50mg combined patch.
I seemed to be stuck in pmt with worse headaches. !!one gp was a gynecologists before.
They agreed in the end I should come off. I didnt know what to do as only 3 weeks in. I tapered off which had its problems too.
Some of course are on HRT for years and swear by it.
A friend’s HRT specialist told her that there might be 10 different HRT preparations and if the 1st one doesn’t suit you would go to the 2nd and so on. You mightn’t find the right one until you get to the 10th. That was more or less right for her.
I was lucky, the first one I tried worked wonders!
Doctor was thinking I was low or depressed and thought I needed some get up and go. Unfortunately I only got 6 okayish days. Walked 'too far' and got a 6 day migraine . Then stuck in pmt symptoms. I was very disappointed as was a big decision for me. I'm 58 now so wont try again incase it's not until the 1oth sort!! Its the vestibular disturbance and the light sensitivity the worst for me. The last injection has taken me back to 'old's symptoms . Horrid.
The doctor. was wrong as in moments of feeling okayish I'm as bright as a button and hope it lasts.
She now realises that I will get on when I can. I'm still very symptomatic. Mainly head pain tinnitus and off balance yesterday. That I haven't had for. some time. Cant seem to move forward at present.
Hi yes thanks for your reply. Have found a couple of pieces of research that point to hot flushes and night sweats being a symptom for some people with B12 deficiency and also for the complete eradication of that symptom after having injections..that is why because it was so sudden I thought it could be one of my symptoms. Would rather have B 12 than hormones if that is the case..
I had very similar experience, tested for B12d following gp appointment for menopause and sore feet making it hard to walk (morning duck waddle). The doctor I spoke to dismissed menopause as I hadn't got to the 2 year point.
Regular B12d shots didn't entirely stop the night sweats/hot flushes but did improve brain fog, falling over, depression, anxiety and other symptoms although its taken time.
I SI every 5 days regime took some figuring out but increasing the length of time means I'm unable to run consistently without symptoms returning.
Peri menopause symptoms stopped around 8 months ago so I assume I'm done with it, probably had peri symptoms for around 2 years?
Wish there was more information about B12d and menopause out there!
my GPs dismissed my burning feet as symptom of menopause so I was mis-diagnosed for at least a couple of years. Eventually tested for B12 deficiency /PA but by then had other nerve damage. Please don't let this happen to you, get a proper diagnosis re. B12 deficiency as this is far worse and has long term implications.
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