Hi all. Gutted to report that my new doctor has turned out to be like all the rest! I have NHS injections 8 weekly, but am still experiencing a lot of symptoms - pins and needles and numbness in limbs in particular. I requested more frequent injections, so doc did blood tests, then called and said that my B12 levels are “higher than the lab can measure”, and that “we know there are links to serious health conditions with long term frequent use of B12 injections” (- do we?!?!) and that he thinks my long list of physical symptoms are “psychosomatic and that we should increase the sertraline to 100mg” I’m so frustrated I could cry!! I managed to persuade him that we try beta blockers first (to try and help calm my palpitations)… and he said “yes, we can try them with a view to also upping your sertraline” 🙄 So I’ll try them for a few weeks, and see if they help with the heart symptoms, and then he’s calling again on 15th December. So disappointed. 😔 Anyone else know where this info regarding B12 not being safe may have come from? I live in Cardiff. Thanks all.
Safety of long term frequent B12 inje... - Pernicious Anaemi...
Safety of long term frequent B12 injections
No idea. Ask your Gp.
I was told yo start sertraline too.
J even paid the prescription twice but something stopped me taking it .
I do Hope it helps you.
I also was persuaded to take amitriptyline.
It dudnt suit me sk cdnr off it with some difficulty.
I had heart palpitations which were one if the first things to go on frequent b12 injections and raising my ferritin levels.
I obviously don't know your medical history.
Is it possible to see another Gp??
I went through 6 in my practice.
Or get a referral to a specialist for another opinion,?
Or buy your own b12 to trial more frequent b12 whilst battling with the doctors,?
Or contact PAS they have literature aimed at doctors
I was eventually diagnosed in 2018.
I do Subcutaneous b12 at home with prescribed B12 . IM at the surgery .
So on my medical notes .
Also buy it. Whichbis great as more in control
Hi JLB,
I’m really sorry to hear that you were unable to have more frequent injections. Plus, your bloods were taken and another ridiculous statement about vitamin B12 frequent injections. (I really do have to bite my sarcastic tongue and have absolutely no idea where such farcical statements come from).
It is so frustrating and if you need to cry then please do. Our symptoms are not psychosomatic or conversion disorders. They can be debilitating, frightening, painful and can stop us doing the most simplest tasks.
Would you consider self injecting ?
Thank you. Yes, I ordered ampules from an online pharmacy in Germany, and they arrived very quickly. I haven’t bought any needles yet, because I’m really confused about the size I need to get. Also need to try and find someone who is happy to show me/my boyfriend how to do the actual injections. All feels a bit overwhelming 😞
Hi,
Jump past the overwhelming because once you see how easy it all is and get the hang of it you are jumping right to freeing!
As far as showing you - if you can not find someone just google. It is not an overly intricate skill - despite what GPs make it out to be.
Lots of advice on self injecting and what to use. Look through wedgewoods posts and others using the search tool. Push the Gps though too in writing
I dud as wanted it recorded on my medical notes I need frequent b12 In jections
I do subcutaneous b12 injections
30G needle
1/2 " long
2ml syringe comoatabje
21G needle to draw up b12
google.com/amp/s/www.wikiho...
Adding this but do not become overwhelmed with the information.
Hi, I watched a couple of videos on utube and then calmed my shaking hands and injected myself. I’m fairly comfortable doing it now but I couldn’t give someone else an injection.I bought syringes with blue needles for injecting, green needles to draw it up and swabs. I think I got them from Medisave, that might not be the right name. I thought I’d ordered 2 of everything to see how I got on but I got it wrong and 200 of everything arrived! So I haven’t had to order again. Hope this helps, do have a go, it makes such a difference to how you feel.
It is overwhelming but once you've done the first one you will never look back. I use a 25m in my thigh, once you get control of this you'll be so much happier. I watched a YouTube video made by a nurse. I've used 1ml and 5ml syringes and personally found the 5 ml easier to use.I wish you all the luck in the world, you can do this.
I'm so sorry that you're having to go through this and that your doctor just doesn't get it. It can be very frustrating to say the least. It's a rarity to find a GP that understands how to treat PA. Please do not despair. Things will be get better. You might have to do what a lot of us have done and take the steps to help ourselves improve our lives by self injecting. I pray that you can get the frequency of your injections increased and that you see improvement in your symptoms.
It never ceases to amaze me that many doctors are so quick to dole out antidepressants to patients but are so reluctant to order adequate b12 injections—a water soluble vitamin necessary to human health and life. This is just astounding. There’s nothing wrong with antidepressants if they’re needed and there’s no doubt that they save lives and have a place in medicine but not when they are readily prescribed without taking the time to investigate and find out what’s really wrong with the patient. Prescribing an antidepressant seems to be an easy way out for the doctor to give up when a patient has issues with low b12.
Look for a new doctor and don’t stop until you find one who will listen to you or go the self-treatment route. Good luck!
It probably comes from not understanding the difference between a correlation and a causal relationship and the use of the word 'risk in medical publications.High serum B12 does correlate with higher rates of cancers and larger tumours. It also correlates with higher rates of liver and kidney disease, but that is very different from being able to say that B12 causes higher rates of cancers or that it causes liver and kidney disease. In the case of liver or kidney disease it is the liver or kidney disease that leads to higher serum b12 levels but it also means that high levels of B12 (in the absence of another cause of high serum B12 (such as high supplementation or injections) can be used as an indicative test for liver and kidney problems leading to further investigations.
Unfortunately medical publications use the word 'risk' as a synonym for the correlation rather than reserving it for a causal relationship, which is how we intuitively understand risk to work ... so high B12 is a risk factor for cancers, liver and kidney diseases. In the medical context of the papers and reports that means it can be part of the diagnositic toolset for those conditions but it gets misunderstood as meaning it is the cause of those conditions.
This is combined with a very poor medical understanding of how serum B12 levels change after an injection. An injection actually raises your serum B12 levels far above the measurable range of the kit used to measure serum B12 and that level then falls over time. There is actually a huge variation in how quickly the B12 gets removed from your blood - and this is where medics, and most people get bamboozled by not really understanding statistics. The average time taken for B12 levels to fall is 1 month for cyanoB12 and 2 months for hydroxo-B12. Unfortunately people have a tendency to think that everyone complies with this average when actually there is a huge amount of variation that sits behind hit. Some people will remove the B12 very quickly, eg a week, and some will remove it much slower (early studies showed serum B12 still raised 4 years later in the case of some participants. Unfortunately the studies don't tell us anything about how symptoms responded to the different rates of removal but we know from anecdotal experience that serum B12 post injections really isn't a way of measuring if a patient is okay and would seem to show no correlation to improvement, or otherwise, in symptoms.
There are also all sorts of misunderstandings of whether or not injections replenish stores of B12 in the liver and how that should affect people's needs for further injections. On one level ability to use the stores is irrelevant because the release mechanism uses the same mechanism as normal absorption and if that is broken trying to apply the model for a person without an absorption problem becomes a bit of a non-sense.
I understand high levels of serum B12 is also frequently from a folate trap. Hydroxycobalamin doesn’t work for everyone and sometimes they need methyl b12 to bring down the serum B12 levels. Genetics often are involved. This happened to from 14 years of almost daily hydroxy b12 jabs. Methyl is helping a lot.
It's a load of bunkum - we've been asking for it on here for years.
You know you are right and it's daft withholding a vitamin, without side-effects that you need (a "cure") just so they can pump you full of other drugs with known side-effects, that you don't need, that will at best just mask some of your symptoms!
It's time you got tough and insisted that he sends you, in writing, the evidence of the problems with B12 that he talks of and ask him straight why he wants to prescribe more expensive drugs with known side effects, which will not address the problem!
Questions to them, especially "why not" are much more powerful than letting them dictate to you.
Good luck!
Hi,
"Anyone else know where this info regarding B12 not being safe may have come from? "
I will try to add more later today but here's a few links that might help explain the comments you had.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
There are other useful articles on website above.
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
If you have a PA diagnosis or suspect you have PA, worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Check out their leaflets and page for health professionals.
pernicious-anaemia-society....
pernicious-anaemia-society....
Could be something you can pass to your GP.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Forum threads where I left detailed replies, lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
The only thing I would say is i was always told if your going to do IM injections use either a 23g or 25g needle, rather than anything thinner.
So are you saying that injecting more b12 made you less depressed?
That seems to be happening to me too! Can’t explain it as I’m not sciencey, but I can report it as a measurable noticeable effect even from an objective standpoint (others have said I seem brighter).
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
Treatment with high dose vitamin B12 been shown to be safe for more than 50 years
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Your doctor is getting confused. (nothing new there!)
There was a research paper which found a link between B12 deficiency treated with B12 injections and incidence of multiple myeloma. It suggested more research required to find if it was the B12 injections or the actual deficiency which caused the myeloma risk. Further research by various researchers confirmed it was the deficiency which was a risk for myeloma not the B12 treatment.
Therefore more frequent B12 injections are vital!!!
I discovered this by googling pubmed "B12 and myeloma" when my blood tests found MGUS which is a pre-cancerous condition for myeloma and other blood/bone marrow conditions.
Sorry can't give you links - having renovations on house and Sundays are catchup time with chores.
Hope you find this info ok. Perhaps you coud contact me again after Xmas if not or maybe someone else on the forum can fill you in.
Hi JLBI've been doing B12 injections monthly for a about three years. During the Spring and Summer of this year I started having pressure/ heaviness in my chest. The episodes had become very frequent. I mentioned it to the GP who told me to go to emerg the next time it happened. I was at the hosp for pre - chemo bloodwork when it happened again. I walked around to emerg and by the end of the day I was told that my B12 was too high and that I should reduce it. I didn't take any this month and the chest pressure is a thing of the past. The chest pressure can be a bit scary. I'm now a pro at deep breathing and relaxing in general. Lesson learned here 
Injecting for almost 2 years now about every 10 days. Almost all symptoms have gone but I get frequenct chest pain, palpitations, and feeling like my heart is struggling to beat. Can’t figure out if it’s due to too much B12 or not enough. I have had many heart tests and all come back normal. Do you think this could be form too much !?
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