Do I Poke The Bear?

[Sparklingsunshine]

I had my B12 jab last week, I get these every 2 months and am grateful to have them. I've suffered B12 issues since childhood, have dim memories of blood tests and B12 jabs back in the day. I changed surgeries in the early 90's due to moving and have been with this practice ever since. So I'm not sure if they have my old medical records.

I started back on regular B12 jabs in 2012, originally every 3 months after loading doses but after mentioning persistent pins and needles in hands and feet, muscle twitching etc I got them reduced to 2 months about a year ago or so. I was chatting to the nurse last week about dosing protocols and if any patients get B12 jabs more frequently.

I mentioned my ongoing balance issues, which started very abruptly two years ago, the pins and needles etc. I've had brain MRI and nerve conduction studies, all OK. No explanation of balance problems. The Neurologist I saw said Vestibular Migraine but no migraine meds have ever helped ( I've tried at least 6).

She looked at my B12 results which are always very high, over 2000,I did explain I do supplement very religiously in between jabs, with sublingual sprays and drops. She's booked me for a consult with a GP next week but I'm having second thoughts. I'm a bit worried they'll see my high B12 and conclude that far from needing more jabs, I dont need them at all.

For background I also have Ehlers Danlos, underactive thyroid and Fibromyalgia. Various medics over the years have just shrugged when I mention the Neuro symptoms and said they could be down to any or all of the above. My PA test was negative but I've never improved results wise on NHS high dose tablets. Hence the jabs.

So now I'm wondering whether to cancel the consultation, thank the stars I get a jab every 2 months and look at SI instead. Please advise.

[charks]

Sadly I think you are right. The odds of what you fear happening is almost 100%. I know some people will council you to march into your GP with masses of information and fight your case. IMO I think the chances of getting more injections is incredibly slim and the stress you will be under just isn't worth it. Stress is a 'silent killer'.

I think your best way forward is to try SI. If your symptoms get better with it then you need to play around with the frequency until you find what suits you best. Or you could up the amount of oral B12 you take. I take oral B12 but have to take a lot to get a good result. At least 5000mcg daily.

[Sparklingsunshine in reply to charks]

Thanks for that, Its what I'm afraid of, maybe if my PA was definitely established I'd have more ammunition but as it was negative and has never been retested I'm worried they'll just tell me to take tablets instead. I do use the sublingual stuff several times a day but I'm never sure how effective it actually is tbh 😒

[charks in reply to Sparklingsunshine]

Although I have PA I find oral B12 works for me. I used to take pills but after a little research I found out that if you have PA oral B12 can only be absorbed passively and only about 1% of the B12 supplement will make it into the blood. It is effectively osmosis which is very slow so the body can only efficiently absorb a small amount of B12 within a given period of time. So if you take a high dose oral B12 tablet most of the B12 will pass through the gut without being absorbed. In order to help B12 absorption it is recommended that you divide the dose over the course of the day. So you are doing the right thing. However I believe that most of the subligual B12 you take is actually swallowed and absorbed in the gut. And I have read many articles that back my theory up. Here is an example.

willner.com/articles/vitami....

You have to page down to the question and answer section where someone asks if sublingual B12 is best,

So I now dilute sublingual liquid B12 in water and drink it throughout the day. Being diluted it coats more of the gut and therefore the chances are that more will be absorbed. I take a lot. I buy 5000mcg sublingual liquid a have 2 to 3 droppers a day. The difference between the pills and the liquid was so dramatic. It really speeded up my recovery.

[Sparklingsunshine in reply to charks]

That's a great tip and I'd never thought of it. I'm happy to buy B12 sublingual if they actually do something, but as we all know the supplement market is worth billions and unlike medicines isnt really regulated so they can make outlandish claims and not have to back it up.

If you sip it throughout the day do you still hold it under your tongue for a bit first?

[charks in reply to Sparklingsunshine]

Waste of time. If you read the article it says 'Sublingual absorption works for small molecules, not large ones, and vitamin B12 is a very large molecule'.

[Sparklingsunshine in reply to charks]

This is my point, so selling sublingual B12, knowing that many PA sufferers probably think they are helping themselves because they cant absorb B12 via tablets, is actually at best a waste of time and at worst downright dishonest and a waste of money. Expensive wee time again. Like many supplements.

[charks in reply to Sparklingsunshine]

You sound like me. Very cynical. If you paid attention to all the hype you would spend a fortune. Turmeric tablets for example. The reason why turmeric is good for you is because it contains curcumin. The dose of curcumin required to give benefit are very high – typically about 1,000mg a day. But only 3% of turmeric is curcumin so you would need to eat a vast amount daily to get any benefit. But the manufacturers don't tell you this. So many of my friends are paying a fortune for nothing.

But I disagree about sublingual B12. I'm glad it is made because it is better than pills because it can be diluted.

[Sparklingsunshine in reply to charks]

But I doubt many people know that, I certainly didnt and they dont tell you. And yes I'm extremely cynical lol. Thanks for the tip, I'm going to try it.

[Nackapan in reply to Sparklingsunshine]

Im with you .A waste of money .

You've tried oral b12.

With little or no effect ftom what you've said.

You know your body.

You know if the benefits of b12 jections outweigh the oral B12 .

I've tried alot of oral forms and 'sublingual ' and liquid and G.p aware.

Infact it was the Gp who said it was worth a trial to reduce the frequency of b12 Injections.

Two weekly at that time.

I only managed 3 weeks 3 times.

Glad it's on my medical record .

I understand your predicament.

Nurses can't change z prescription

So at least you'd nurse did the right thing and refer yoh to s doctor that can .

Showed her/ his ignorance though in going by your blood results not symptoms.

Also once on injections levels do jot need to be tested .

They shoukd be high.

Whole point.

I'm left with a vestibular disorder .

My balance is the first thing to go and headaches / migraines if I dong keep b1e levrjx high with b12 injections.

I also have had 2 brain Mri scans z yesr apart .

2 courses of vestibular pysio courses.

Ear pressure and hearing tests .

Balance issues csn be caused by many things.

I hope everything else ruled out.

You should at the very least get b1e injections 8 weekly

Gps have their guidelines.

You dont need to go armed with loads of info

I never did..

I just stated the facts of symptoms returning .

The improvements felt after an injection .

Was open to trying to reduce them by trying oral b12 .

As you have .

Just point out your long history .

Youf clinical response to treatment and wondered as symptoms are returning s higher frequency might help you.

I mentioned PAS and still learning about it all.

New NICE guidelines you are aware of.

A G.p will probably sought advise prescribing more than 8 weekly.

The g.ps I've seen did.

One emailed a neurologist I'd nevef met .

My regime was ' santioned '

Covering g.ps back.

Good luck on whatever you try .

[Sparklingsunshine in reply to Nackapan]

Thank you, my balance issues have very very slowly improved over the last two years, whereas before they were 24/7 and severe, now they dont tend to show their ugly face until late afternoon. I'm not dizzy,but unbalanced. I feel off when I walk. Like on a trampoline.

I've tried everything. I was even on a university clinical trial for a computer game designed for visual vertigo, nausea and vestibular symptoms triggered by motion on a screen for 3 months. I've done vestibular physio and balance exercises. I'm just fed up with it and want to rule out B12 as a possible cause. I'm just worried in case they reduce my jabs or stop them altogether.

[charks]

I don't think you are ever the same once you are B12D. Normal bodies squirrel B12 - it stores 7 years worth in the liver. People with B12 have exhausted their B12 store. We are like cars always running on empty.

I use balance as an indicator that I am low in B12. It is one of the first symptoms to show. For example I go for long walks at least twice a week. If it is very exerting ( i.e walking in the Peak district ) I can start having balance problems. I know this can happen so I take a bottle of diluted B12 with me on the walk - rather like an energy drink - to help prevent the problem.

[tomdickharry in reply to charks]

Please study the document 'THE ENTEROHEPATIC CIRCULATION OF VITAMIN B12' by Kevin Byrne. It explains how B12 is NOT stored in the liver. The liver just uses such a lot.

[charks in reply to tomdickharry]

All the articles I have read says it is stored in the liver but I stand corrected. The part where he states that people with PA take only 1-3 years to become B12D is interesting.

[tomdickharry in reply to charks]

Yes, even most doctors think that the liver holds an enormous surplus to be used when blood levels drop. In fact the liver needs all it takes, if there's any left over the kidneys dispose of it.

The kidneys also do something in the routing of B12 but I'm still looking into how that works. I know it depends on the concentration of urine but I still don't know enough to comment further.

[Cornwaller]

I would cancel the appointment by phone and say your going away or some such and you’ll reschedule when your back. Hopefully the usual inefficiency will kick in and the whole thing will be forgotten. A friend of mine has put off a review of their thyroid results for years - the GP doesn't know what t3 does to the blood results. Sigh.

[Sparklingsunshine in reply to Cornwaller]

I'm very good at dodging thyroid reviews as well ☺. Them not being able to text me helps a lot haha.

[debra_bill]

Maybe it depends what has caused your B12d, as to what works well or even has any affect.My mum has fair, visible, results with sublingual. She won't SI.

My partner said he no longer feels like he's been hit by a truck when he wakes up. He may or may not have been B12d, but he has haemachromatosis, so avoids red meat. Could have been a bit low, or could be a placebo......He won't let me jab him to see if it has any affect 🤔

I tried reducing my SI and adding in sublingual, but it didn't seem to do anything. I'm back to SI eod. I'm about 8 or 9 months in. Pretty sure I'm auto immune B12d to go with my hypothyroid.

I would cancel the doctor & try SI. If it helps let your doc know at your next appointment, if not...what they don't know won't hurt them will it!

[Sparklingsunshine in reply to debra_bill]

No indeed I already use Low Dose Naltrexone private and my GP doesnt know. I'm guessing getting NHS jabs increased is well nigh impossible.

[Sparklingsunshine in reply to debra_bill]

I have Hypothyroid as well. I've struggled consistently with low folate, iron and vitamin D. I just buy my own supplements now though. More NHS cutbacks.

[Litatamon]

Cancel.

[Sparklingsunshine in reply to Litatamon]

That's my instinct as well. I'm worried I'll lose what I have. Thanks.

[Nackapan in reply to Sparklingsunshine]

It's so tricky. You instigated the doctors appointment by asking the nurse .

I did the same when the nurse questioning / refusing my prescription.

I decided to follow it through .

You are having 2 monthly.

I thought the point of the consult was to ask for more?

They may not agree to that without a specialist back up.

I don't see why they woukd stop your present regime as is clearly in guidelines 2-3 monthly when you only stating you want a trial of more .

A referral may be sought or advice by email as mentioned what happened to me .

Any doubts of worries of the consult

Cancel / delay.

Do be aware

If you see the same nurse she/ he will refer to last entry on your notes and may question it .

As would any good clinician.

Hope you get on okay

[Sparklingsunshine in reply to Litatamon]

Yes thanks to everyone who replied. I've cancelled next week. Its a shame but my gut instinct was telling me that with my levels so high and in view of NHS cutbacks, I would be more likely to see my jabs get stopped, not increased.

I'll stick with what I have, use sublingual drops and maybe consider SI again. I know my surgery wont pursue it lol.

[prillyb12]

This is a very interesting discussion for me at this time. I'm glad so many people responded with experience. I'm in the process of having my B-12 injections reviewed by 2 different clinics in the USA. My B-12 blood level came in at 4,083and my folate at the top end of the range at 24.8. The medic said to 'stop your B-12 injections and your folate supplement.' So I've decided to experiment. I was also told to take some iron as I was anemic.

So I've added a low dose iron every other day. I'm now 28 days from a B-12 injection. (I SI.) I'm monitoring myself, taking sublingual, adding methyl folate, and drinking some coffee as needed to keep my energy reasonable. I'm actually surprised I'm doing ok so far. I don't know how much longer I can go though. I see my prescribing MD in 2 months and will report to him.

By the way, I recall reading some years ago that the nasal membranes were large enough to absorb B-12. Maybe I'll try doing that and see what happens. Would I dilute the sublingual in water or saliva for better absorption?

Thanks if you read this and for any comments.