I receive my b12 injection every 3 months, but am feeling symptoms returning with a vengeance recently about a month before the next injection is due.
So thought I would give the B12 spray a go and wow, I wish I had tried it a lot sooner! I would constantly yawn throughout the day and be falling asleep by 9pm, but yesterday after trying the spray for the first time, I felt better almost immediately, and today I haven't yawned once at work all day.
I also brought a Vit D spray which I am keen to try, but just wondering if they can be taken together?
Also I'd just like to say howv grateful I am for all the advice I have received on here from fellow PA sufferers. You all rock!!
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Helena12
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Hi just wondered how long three monthly worked for you and where you purchase spray? Sorry I can't help with your question but I'm new to this and trying to get as much info from all you helpful people 😊
In UK, people with B12 deficiency with neuro symptoms are supposed to get a loading injection every other day for as long as symptoms continue to get better then it's an injection every 2 months.
You mention injections every 3 months.
UK B12 treatment info can be found in...
1) BNF British national Formulary Chapter 9 Section 1.2
All UK GPs will have access to BNF, probably a copy of BNF book sitting on their desk or bookshelf . It's possible to get own copy of BNF.
Yes I have pins and needles, tinnitus, difficulty walking in a straight line, memory issues... I mentioned all these to my GP at my last appointment and requested more frequent injections, which he refused.My level was high (2000) so I worry these symptoms could be a sign of something else?
I will definitely look into writing a letter, although I don't hold out much hope.
In link in my post above, about writing letters to GP, Point 1 is about undertreatment of B12 deficiency with neuro symptoms and the potential consequences.
I noted that in a previous post you had a confirmed diagnosis of PA. Could well be worth joining PAS if not already a member ,as they can sometimes intervene on behalf of members trying to get correct treatment and at very least can pass on useful info.
There are stories on Martyn Hooper's blog about how PAS has helped members that may be relevant to you.
Also an interesting blog on "B12 deficiency Info" website.
May be worth you getting proof of PA diagnosis eg copies of medical records/test results as some people on forum have had injections stopped at some point and when they pointed out PA treatment is for life, found that the PA diagnosis was not recorded in their notes.....
"I have pins and needles, tinnitus, difficulty walking in a straight line, memory issues."
Did you have these neuro symptoms before you were diagnosed? How many loading injections did you get?
Just noticed your comment "I initially had 6 loading injections,then one a month for 3 months"
If yes to 6 over 2 weeks then this is the standard treatment for B12 deficiency without neuro symptoms. Loading injections for those with neuro symptoms, one every other day, could be over a period of weeks even months as long as a person's symptoms continue to get better. BSH Cobalamin Guidelines does mention possibility of a review after 3 weeks of loading doses for those with neuro symptoms.
I must admit to feeling exasperation as this story of potential undertreatment of B12 deficiency with neuro symptoms seems to come up on the forum most days.
Next appt. if your GP is kind perhaps he/she will let you look in their copy of BNF (British National Formulary) at Chapter 9 Section 1.2 where treatment of those with PA/B12 deficiency with neuro symptoms is laid out.
GP will probably have a copy of BNF sitting on desk or bookshelf. You could always get your own copy of BNF to show GP from a good bookshop or popular internet retailer.
"My level was high (2000) so I worry these symptoms could be a sign of something else?"
When was your blood tested? I'm sure that BSH Cobalamin and Folate Guidelines makes the point that testing B12 levels after treatment has started is irrelevant.
Think there are quotes in fbirder 's summary of B12 documents about this. Link to summary in third pinned post.
Some GPs are under the impression that high levels of B12 are toxic.
With a variety of neuro symptoms have you seen a neurologist?
You are right that it is possible to have more than one health condition at a time. A good neurologist should be well aware of the effects of B12 deficiency although I met several who were not as well informed as they could be.
One thing I found when I was given a neurological examination more than once was that none of them ever carried out tests with my eyes closed. B12 deficiency can lead to problems with "proprioception", the awareness of body in space. Are you ever clumsy?
If you have a neuro appt, might be worth reading up about "romberg test" and proprioception before appt.
I found when I was at my worse, that if someone walked towards me and I lost sight of my surroundings, I would start to lose balance. I also had problems with balance at night, if I woke up and could not see my surroundings.
There is a very active Thyroid UK forum on HU. If you have any thyroid results it may be worth posting them on Thyroid UK forum. In UK, GPs often only do TSH test which does not give whole picture about thyroid function.
Having one auto-immune condition (PA) sadly increases the chances of developing another.
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