"Geriatric doctor"

[Pixielula]

Hi guys.... I have been back again to my GP to try to get more frequent B12 shots (did my first selfie three weeks ago) I took a symptom list hi lighted with all my returning symptoms and she did take a bit more notice this time. But was still very reluctant to perscribe more frequent than 12 weekly. So is sending me for a second opinion as she is worried that the symptoms are not B12 related. I did stress that all symptoms disappear after my b12 shots and as long as I take my sublinguals everyday and don't forget them. I also pointed out that the practice nurse told me that lots of the patient need shots more often than 12 weekly and she has one who has them daily, but dr said these were all historical patients and they have been kept on there original regime. But new patients are only supposed to be 12 weekly.... Omg I despair!!! Ok so a referral letter came through today for geriatric medicine!!!! Is this right? I don't want to go to another pointless appointment and spend six quid on parking to find it's the wrong consultant...... Who would I need to see for this second opinion??

[Hillwoman]

A haematologist!!

Reminds me of the time my husband was supposed to be referred to an endocrinologist and found himself with an appointment for an endoscopy. It turned out that an admin person at the surgery thought anything beginning with 'endo' was all the same thing! They wouldn't even have found his thyroid that way...

[LtAngua52]

I think geriatric medicine is tailored for senior citizens. It's a rather derogatory term really and I thought they had changed it. They look at those they consider 'elderly' as their illnesses can present differently, in a more unusual manner. Sounds like your doctor doesn't understand about b12 (not a surprise) and thinks your symptoms could be due to age! Only you will know if that is appropriate, but I would have thought she would send you to a haematologist, they usually do. Sorry I can't be of more help. Others will have better guidance.

[Foggyme Administrator]

Hello Pixielula. WHAT! A GERIATRICAIN!!

Well, I'm completely at a loss as to why your GP would send you to Geriatric Medicine for a second opinion!! Geriatric medicine deals with the health and care of old people!!! And whilst she may be worried that your problems have other causes than B12 deficiency, I'm really not sure why she should think that a geriatrician is best suited to get to the bottom of your health issues.

To put it bluntly (and mildly) I think this is a very strange thing to do!

Is it possible to make an appointment to see her and ask her to explain why she has made the referral to this particular speciality and why she thinks they may be able to help you. Surely, if there is a known problem with B12 deficiency (and I'm assuming there is - sorry, too late to read through your posts to see) then B12 is the logical place to start or continue investigations. Sounds to me like your GP needs to be better informed about all things B12 (and beyond).

B12 deficiency affects many different systems in the body and can therefore involve many different specialities (i.e. Gastrology, neurology, haematology etc.), depending on the symptoms you have, and any of these would be more appropriate for a second opinion. But it has to be said, many consultants (in all specialisms) have limited knowledge and understanding of B12 deficiency, it's presentation and treatment.

I understand that there is a very good unit at Guys and St Thomas's in London that specialise in and research B12 deficiency (sorry can't remember more detail at the moment but a quick internet search should track it down).

You could perhaps write to your GP outlining your concerns and giving evidence of why you think your problems are B12 related (sounds to me like they may be), and ask her to refer you to them (I think this is your right under the choose and book system). However, since the onset of Care Commissioning Groups, many GP's are unwilling to refer 'out of area' since it involves discussions (arguments) about funding and is, in the words of my GP 'too much paperwork'. You might have a fight on your hands if you choose to go down this route.

In the meantime, you could keep a log of your symptoms, note when you have B12 and track any improvement post-injection etc. so that you are building your own history and evidence of what's happening to you.

If you get really stuck, you could ask Martyn Hooper at the Pernicious Anaemia Society or Tracey Whitty at b12d.information.co.uk to intervene with your GP on your behalf. I know that they have had some success in the past.

In conclusion, I really don't think that a geriatrician is the best person for you to see, but I think you know that! Even if your health problems have other causes, if I recall rightly, you are not yet classed as a 'senior citizen' so, again, not sure why she chose that particular speciality!

Sorry but it's late now, this is just off the top of my head. It made me quite cross when I read your post so I at least wanted to say something.

I have to sleep now but if I think of anything else, I'll add a post tomorrow.

There are lots of knowledgable people here so sure others will add suggestions.

Very best of luck and let us know how it goes.

[Singoutloud]

Mine sent me to the dementia clinic for my Thyroid. Apart from finding out I don't have dementia it was a waste of time!

[Pixielula in reply to Singoutloud]

Haha oh dear what hope do we have ......

[clivealive Forum Support]

Hin Pixielula I had to go through all the "checks and balances" with my doctor to make sure there wasn't "another cause" for my symptoms e.g my diabetes, low Vitamin D, kidney problems etc.

Now they have all been ruled out she "finally" agreed yesterday to increase the frequency of my injections. We (naturally) think this is the wrong way round for doing it but I guess B12 deficiency/P.A, is low down on their list of priorities.

As to your "Geriatric Doctor" it may well be that he/she may be aware of B12 needs among the "elderly" even if you don't fall into that category yet.

On page 11 in the book Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission

[Pixielula in reply to clivealive]

It hanky you Clive i have got Martyn's book

[Pixielula in reply to Pixielula]

That meant to say Thank you Clive ........ Typing ataxia!!!

[Pixielula]

Thanks for your answers guys I didn't think it sounded right! I know some days I feel 80 but I am only 50, most of my symptoms are neurological, dizziness loss of balance/co-ordination bumping into things dropping things knocking things over word ataxia terrible fatigue muscle aches/weakness .....we were on holiday a few weeks ago and I nearly toppled off the side of the hill we were walking I was so dizzy and I had purposely self injected the week before and was taking two 5000 jarrows a day, it's so depressing!!

[Sleepybunny in reply to Pixielula]

"I know some days I feel 80 but I am only 50"

I know just what you mean Pixielula......

[sweetnessandlight]

Seeing your last comment makes me think that a neurologist may be most useful. It has been for me but only to the extent that he has been willing to keep on testing. Haematologist and haematologist were absolutely useless.

[nomizo]

It amazes me. I am 78 years old and was diagnosed 28 years ago. My GP started me on 12 weekly shots but worked with me to establish a sensible regime. The frequency was changed progressively over a few months and ended up with me having a shot every two weeks. So I have been having a shot every two weeks for the past nearly 28 years - and I am fit enough, aged 78, to pass the 7.5 tonne, with trailers, driving licence medical.

I always know when two weeks have passed. I sort of "fall off a cliff" if I do not have a shot on time. My wife also knows. She notices a change in me.

In fact, the two weeks is a bit flexible. It can be anything between 10 days and 17 days. My wife knows when I need a shot - and so do I. The difference between 10 and 17 days seems primarily to depend on the amount of stress I have experienced. In other words, it is neurological.

One interesting thing was that, when we retired and moved house, we changed GP. The new GP was a little concerned about me having a B12 shot every two weeks and wrote for guidance to a haematologist. The haematologist replied that it would do no harm to have a shot every two weeks but would do no good. On the grounds that every two weeks would do no harm and I was fairly insistent, my new GP prescribed shots every two weeks.

I also saw a neurologist about 10 years ago, simply for a check up. He said that a shot every two weeks was not a problem and possibly I needed injections more frequently.

My opinion is that one should not ask a GP or a haematologist, one should ask a neurologist. GPs have to know a million things, so one cannot expect them to have a detailed knowledge of the chemistry of the various forms of B12. (There are many - some useful and some useless.) Haematologists know about blood and if your red blood cells are looking OK, then it seems that they are happy. But the critical problem is with the nervous system and the danger is that if one does not have enough "active" (i.e. useful) B12 then the myelin sheaths round the nerves will suffer - as with MS.

I suppose that the real question is how much of the injected hydroxocobalamin is converted to holohaptocorrin in the blood stream and how much to holotranscobalamin ("active" B12), methycobalamin and adenosylcobalamin. The last three are, of course, useful. The holohaptocorrin is useless to us PA people. Holohaptocorrin is swept up by the liver and sent down the bile duct for recycling in the gut to holotranscobalamin, which can be absorbed. Unfortunately, if one has no intrinsic factor, or intrinsic factor antibodies, it does not get converted, but simply goes out the back end. We are rather like engines with badly designed total loss lubrication - no oil pump. Pour it in the top, lose it out of the bottom. The design is so bad that the oil doesn't even get to lubricate the camshaft or the crankshaft bearings - just gets lost out of the bottom. The "oil pump" is actually the "enterohepatic circulation". B12 into the gut - convert to absorbable - absorb - liver sweeps up the unusable forms - sends them down the bile duct - reconverted to absorbable - absorb - and so on and so on - round and round. Only with we PA people it doesn't work. We do not have an enterohepatic circulation system.

In my case, it is obvious that the amount of injected hydroxocobalamin that is useful is limited. In other words, the amount that is converted to holotranscobalamin, methycobalamin and adenosylcobalamin is limited. Much of the hydroxocobalamin will change to useless holohaptocorrin.

A simple blood test that measures all one's B12 measures all forms of B12 - including holohaptocorrin. My test goes off the scale, implying that I am swimming in holohaptocorrin, which is useless to me. But it does not seem to affect me. My liver, bless it, is getting rid of it. (My only complaint is that I have a slightly arthritic left hip, which is understandable for someone who was, and probably is, physically over active. After all, Olympic medallists get that at a much younger age!)

In summary, it is possible that you do have some condition in addition to PA. But until your PA is sorted out, I would have thought that there is little hope that the other problems, if present, will be identified properly. It is possible to get a blood test that measures only "active B12". That test is not readily available. My GP had never heard of it. But stick that term in your search engine. It is quite illuminating. It would be interesting to know what your "active B12" measurement is three months after you last had an injection.

[nomizo]

I have just done a search on "active B12". It seems that things have advanced a great deal since I first researched it - years ago. NICE have a long document about it.

Unless I am misreading, it seems that the test is available in about 50% of hospitals.

The link is

nice.org.uk/guidance/mib40/...

It might be worthwhile printing a copy and presenting it to your GP with a view to insisting on having an "active B12" measurement just before you are due to have another injection - just about the time that you are about to "fall off a cliff", which is how I feel if I am late for a shot.

The beauty of the test is that, if available, it is far less expensive than a full B12 measurement - which is pretty meaningless anyway. So your GP will have difficulty in saying "no" on cost grounds. Mind you, I am pretty good at misreading, but it seems to me that NICE say that the cost of the test is about £3.50.

The NICE document is very educational as well!

[Pixielula in reply to nomizo]

Oh thanks for that information, would I have to go "cold turkey" after having my next injection? As currently I am doing an interim shot at 6 weeks and then a few weeks after each shot I need jarrows 5000 mg sublinguals one or two a day. Without these I would have to give up work and stop driving. ......

[nomizo in reply to Pixielula]

I suggest, and only suggest (I am an amateur - a retired engineer, actually, which might account for my mechanistic explanation), that you simply go as long as possible, but not to the extent of reaching total "cold turkey". If you are in a total cold turkey state you could be doing irreparable damage to your nervous system.

I would have thought that a fairly low reading, despite it being taken say 5 weeks after an injection and despite sub-linguals, should be sufficient to persuade anyone even from amongst the "I have read the book - OK it was 20 years ago - but it says that in the BNF as well" brigade.

On the other hand, if you are consuming one or two 5000 mg methylcobalamin sub-linguals every day, you are maybe getting a few percent of each into your blood stream - and methylcobalamin is one of the "good ones" so it keeps you going. (30 years ago we had no access to sub-linguals, so I became a Marmite addict!)

Incidentally, I find that sub-linguals do nothing for me. Maybe that is because I get a proper dose as I am injected (by my retired nursing sister wife - lucky me) at a proper frequency. The important thing is that we are all different. I was lucky - I had a GP who was willing to work with me as an individual and not as just another who had to be treated according to the book. I do not know how often you will need an injection. It could be more often then I do, or less often. It is all a matter of experiment.

Also incidentally, it looks from searching that you can get an active B12 test done privately, and I assume (based on the costs mentioned in the NICE report) that it should not be dramatically expensive. It would be fun to plop the results of that in front of your GP.