The haematologist told me, at the end of my first appointment, that I should write down any questions I have for her and we will go through them next time. That's next week.
Although my test results are:
Intrinsic Factor Antibody: negative
Active B12: normal
I still have the following symptoms:
hair loss, bleeding gums, sore/split mouth in corners, l/h hip pain, back pain, osteoporosis of the spine, daily diarrhoea, sore hot tongue (swollen/ piecrust), thrush-type tongue and throat infection, thick mucosal saliva, white noise with draining tingling under skin, tinnitus, pins and needles tingling soles of feet and hands, weak arms and legs, sore stiff feet on waking, yawning continuously (air-gulping) to no avail, dizziness, impatience, mood swings, angry outbursts, inability to focus or concentrate, inability to multi-task (even simple tasks), skin hypersensitivity / numbness and lack of feeling, crying, inability to do anything else if having a discussion, memory loss, sensory overload, cognitive inabilities, solitariness, afternoon naps and exhaustion.
I have already had a diagnosis, confirmed by St Thomas', of Functional B12 deficiency, but it seems that everyone wants to re-diagnose me with something else ! All of these symptoms seem to come and go but I haven't had a 'clear day', can't establish a pattern despite 'obsessive' recording (!), and only know that 'maintenance' doses, however generous, are failing to do their job - unable even to maintain a level in me that I really can't cope with.
How to get anyone to believe me or listen to me, when latest test results seem to reveal nothing helpful ? Do I really have to pin my hopes on the brain scan ? What to ask for- what's left ? This really is the last chance. Any ideas would be welcomed.
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Cherylclaire
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I think I am looking for the Magic Words that can help me out of this mess, Clive.
Well aware that the GP has handed my care over to the haematologist (who is after all recognised as a B12 expert), and that she will follow her instructions for long-term treatment for whatever condition (if any) that she diagnoses, regardless of the 2 diagnoses already made: B12 deficiency, subsequent Functional B12 deficiency.
Feel like I fell down a rabbit-hole into a world that I don't understand at all.
You could ask the haematologist what they know about functional B12 deficiency and how to treat it. Are they aware of the BCSH guidelines on cobalamin deficiency and the importance of evaluating symptoms? Ask if they have had other patients presenting with functional B12 deficiency? how were they treated? and what the outcome was - if they know?
I don't have a diagnosis of functional B12 deficiency but just know that it fits with what happened to me after diagnosis and loading shots and with the way I need to treat myself - by keeping my levels constantly astronomic. I do find that I can use other forms of supplementation - not just injections - though I do self inject and would need at least one a day if I relied on that. I do get times when I forget to supplement and I can get totally wiped out as a result - and it can be quite frightening if I am away from a viable source of B12 (great user of nasal sprays). These don't result in large amounts getting into the blood stream the way injection does but seem to be effective at keeping levels where I need them if used frequently. So it might be worth asking them as well what they know about other methods of delivery for B12 - though only injections are currently licensed as formal treatments on the NHS where there is an absorption problem.
However, need to stress again that I don't have formal diagnosis - might be that there is something else going on in my case but I just haven't found a cross reference to it in literature yet. What works for me isn't necessarily going to work for someone else
- but you seem to be able to relate to my condition Gambit62 , -and that is such a comfort to me when I'm feeling like perhaps I'm the only one, or wrong, or 'barking up the wrong tree' (quoting GP, prior to diagnosis), or the failure to respond to 'maintenance' is because they all missed something else...... all maybe irrational thinking, but everyone needs some sort of confirmation, and all I'm getting from professionals is conflicting, confusing and barking up several wrong trees (??)
Based on everything that's gone before and that this haematologist has already refused to 'authorise' more frequent B12 injections (contrary to BSH / NICE guidelines on the treatment of B12 deficiency with neurological symptoms) and the Talbot and Turner research paper that recommends frequent injections/keeping B12 levels very high as the best way (only currently know way) to treat functional B12 deficiency...think I would ask the following:
In view of your confirmed diagnosis of functional B12 deficiency, why is she reluctant (refusing) to prescribe the treatment recommended following research by one of the top clinical neuroscientists in the country? (Take the Talbot and Turner paper and show her the very last paragraph)
Functional B12 deficency aside, you have B12 deficiency with neurological symptoms so...ask her why she will not prescribe treatment for B12 deficency with neurological symptoms as per BSH and NICE guidelines (every other day until no further improvement).
Explain that you are worried that under treating your B12 deficency/neurological symptoms will lead to subacute degeneration of the spinal cord. Ask her to confirm to you - in writing - that you are not at risk of this. Also, if she won't prescribe treatment as per the guidelines, ask her to explain that decision in writing and provide medical evidence to support that decision (she won't be able to - there isn't any).
Sorry if the questions sound a little blunt Cherylcalire, but I think blunt is all you've got left - since none of these people (GP, neurologist, haematologist) seem prepared to treat you - even according to current guidelines!
I'll be keeping everything crossed for you...be brave...and I do hope that you're able to take someone with you 😀.
Can I have a link to the Talbot and Turner research paper please!!! The haematologist kind of told off my GP for .. I guess giving in?? ... prescribing injections as per B12 regime treatment with neurological symptoms... based on the fact that the neurologist was not sure whether my pins and needles are due to B12 deficiency ( not in his report but he did say that feeling better after B12 injections was a placebo effect!)..now my GP & haematologist have agreed to give me 3 monthly injections x 10. So, no diagnosis & no investigation as to why my B12, folate and bit. D are low ( I also have Hashimoto's).
So glad that I will be having injections but feeling frustrated that they don't believe me. I was going to say Glad it's not just me... but I'd better rephrase it.... sad that they don't believe us!
Hi VickyB12. An injection every three months for neurological,symptoms...******* ******* *******
What are these people playing at.
Sorry but I was just logging of so....will PM the Turner Talbot paper but can't stop to talk now.
Put up a new post if you need help...writing to GP (with evidence) often works...and we can help evidence and arguments to make.
Some days I got so cross at what people have to endure at the hands of the caring profession 😡😡😡
PM on way and I'll watch out to see if you put up a post (title it 'help getting treatment for GP' - people always try and respond to requests for that sort of help.
Don't expect much, VickyB12 - and this really is it, I'm afraid, as far as research into Functional B12 Deficiency and long-term treatment goes. Stichting B12 tekort (on pinned posts) talk about it, and NHS site does too. So it's a thing. FACT.
Otherwise, it seems, you have to show them you can't manage on an injection every 3 months, then that you can't manage on 1 a month..... and by then, damage could be irreversible. So please don't.
Yes, you are right.... I know now...if they are not willing to accept that my B12 levels dropping from 600 to 310 in 3 weeks is not normal, no matter what i do or say..they don't want to hear..they're better off believing that the pins & needles are in my head and the relief from the B12 injections is a placebo effect!
You are right, this second appointment is probably the one that decides my future.
I went to work for a couple of hours, just to show my face and update the Bursar and my friends and students, on Tuesday. It made me feel sad, still so far removed from a healthy return to work, and exhausted (slept for much of yesterday): that's not nearly enough for me. If I'm 'lucky' enough to keep my 1 injection a month, this is all the life I'm left with.
Not brave then, just inevitable.
PS: Really disheartening that all I have to wave at anyone is the brief and rather vague recommendation from T&T !
Yes, I agree Cherylclaire. Unfortunately not much published research on functional B12 - yet. Understand that more research is underway, but goodness knows when that will be published...and even then, so few know about it that Imthink it'll be an uphill battles for some time yet. Unfortunately.
Please don't despair...if all goes wrong you can join with many of us here and take control by self-injecting your own B12 - but how shameful that we have to resort to this just to get and keep well.
The way GP's (and consultants) carry on, you'd think that vitamin B12 was the most dangerous and expensive drug in the world, rather than the life saver and life giver that it truly is.
Hi again Cherylclaire. I have a little thought prodding my brain (perhaps belatedly)...you may have said at your seeing a different haematologist. So, in case that's the case and your getting another bite at the B12 cherry...
Make a bullet point list of everything you want to cover (quote short).
Perhaps start with medical history - update on where you're 'at':
Write all your symptoms on a sheet of paper and hand them over - will save you talking and the haemo writing (can scan quite quickly) - will leave time for important talk about what can be done to help you - and all the details will go in your medical records (often a lot of what we say at consultations never makes it into our medical records 😖).
Take copies of the blood test results that demonstrate the presence of functional deficiency (keep,the originals for yourself and hand the copies over - will go in your medical records).
I think at one stage when you were having alternate day injections (before they were stopped 😡) you mentioned that you'd noticed some small improvements? Be sure to mention this - most would consider it a successful therapeutic trial and continue with the every other day regime (not extend the frequency to the point where symptoms get worse).
Neurologists appointment - Neuro opinion is that you do not have neurological deficits (clinical signs of neurological damage - however waiting MRI scan and nerve conduction tests) but - and this is important - you do have the neurological symptoms often associated with B12 deficiency. And if your neurological symptoms are due to B12 deficiency, then you will eventually develop neurological deficits if this is under treated (sorry to have to say that but it's something you really need to raise if it looks like treatment with alternate day injections is not going to be forthcoming)...
Which leads to the three potential questions I've given in my other reply (though perhaps phrased a bit more diplomatically if its a first outing with this haematologist. Think it's really important that you get these question in if the appointment does not go in the way you would like... It might be your last potential bite at the B12 cherry 😖😖. And oh how bad is it to have to say that....sorry, sorry sorry.
If the (new?) haematologist is willing but unsure (dreadful as that is) you could always ask for them to try and help you by finding find a haematologist (or a neurologist) who specialises specifically in the treatment of functional B12 deficiency 😀.
When people here exhaust all the medical options and fail to get treatment, many take control of their own treatment and turn to self-injection. If this is a route you decide to take (or are forced to take), then we can all help and advise on that...so please don't despair if you have another bad experience.
And perhaps the only way you'll finally know if more frequent B12 is the answer...is somebody actually prescribing some...or taking control yourself 😀.
Very best of luck Cherylclaire. As always, everything crossed, sending packages of courage...and hugs x
And yes...today it seems I've really lost the plot...I see it is indeed your second appointment with the haematologist...perhaps I should just go to bed now 🙃🙃🙃🙃🙃🙃🙃🙃🙃
Hi , Foggyme , I think it is entirely my fault you are confused. You have probably been following my many posts, which are never exactly brief and reflect my mood-of-the-moment ! (Good example of deficiency ? )
So here's the plot:
FEB 2016: GP found me B12 deficient, put me on the usual: 6 injections in a month, then one every 3 months- by the 2nd one, I was clearly getting much worse. More blood tests: St. Thomas' confirmed Functional B12 Deficiency (MMA high) and I was immediately reloaded: OCT 2016: 2 a week. (????)
This went on for months this time before I started getting worse. I wrote a letter to the GP asking questions, and gave copies of symptoms list, symptoms progress charts. MARCH 2017: She put me on 1 injection a month (????) and decided to pass my treatment to a haematologist because she felt it had gone beyond the remit of primary care and could not answer all of my questions.
APRIL 2017: Saw haematologist (1st appointment): she asked a lot of questions, examined me, but said that the level of my initial deficiency was "not low enough" to have caused all these problems, and said she thought my cognitive/ memory/ behavioural problems were due to smoking for 35 years: lack of oxygen to the brain. (????) Said to write down question for next time.
APRIL 2017: Called back to fracture clinic after osteoporosis test: have got osteoporosis of the spine (although MRI on spine previous year did not pick it up and blood tests have shown no low range/ deficiencies in either Vit D or Calcium)
MAY 2017: Saw neurologist: Got @long letter' from my GP. He will do brain scan, won't do spine scan- (examined me and doesn't think I need it)- and will do electric nerve tests, believes I have a good case but does not know enough about B12, suggested putting my case to haematologist. Suggested I might have niacin deficiency and some sort of headache syndrome (without the headaches) (????)
Haematology appointment (2nd): 17th May. Same haematologist as before - and yes, you are right, she IS the B12 expert - so what she says will be the Final Word.
Hi Cherylclaire. No, not your fault at all...I seem to manage confusion all on my own 😉🙃.
Shame on your neurologist for passing the B12 buck. If he thinks you have a case, he could a) get off his chair (not the word but it will do in public), do some research...and write to your GP to request more frequent B12 injections. (This kind of research for him would not take very long). I feel another bout of crossness in your honour...again!
Shocking to think that this haematologist is a B12 'expert' - but still doesn't know how to treat functional B12 deficiency...or B12 deficiency with neurological symptoms. Nor does she appear to even know the guidelines issued by the British Committee for Standards in Haematology. Shameful. Again.
To talk of B12 levels not being low enough to cause symptoms...when we all know how blunt a instrument B1/ levels are for assessing deficiency...and in the presence of a proven functional deficiency...shameful. Again, again and again.
Anyway, good luck on 17th May...everything double crossed (no pun intended - though it is very apt) 😀 x
Well who knows, Foggyme, maybe I'll become part of her next research paper ! If it helps move this thing along..........always happy to help learning take place.
My partner and both our families, my friends, my students, my work colleagues, my bosses and even the librarians can tell that there is something wrong with me. Its just the people that could help me that don't seem to notice !
I've started a painting : it's working title is "me and me (deficient)". May take me a while, work for good days only, but it will keep me occupied between appointments.
As for you Foggyme , seems I'm turning you into quite a crosspatch, lately !
Do they say what they think caused the Osteoperosis? I did read somewhere that these Dexa (sp) scans can be quite unreliable..I was told I had Ostopenia ( worse in the spine) but a recent MRI showed a very healthy spine. Don't lose hope with this.
It souds quite loopy to be honest the various conclusions drawn by these Consultants. How can you have a headache syndrome without headaches? Call me crazy but it sounds like a guess to me!!!
I know you smoke but what is your diet like? I smoked for years..over 30 and no one even knew because my skin looked so good. It was all down to fresh home cooked food. I vape now as I like the nicotine.
I take 400mg niacin daily. I like the flush..It pushes all the blood to all our extremities. I take vitamin D, B complex, Vitamin E, good bacteria and 600mg Magnesium, folate, natural. I don't take calcium as I like to get that from Dairy.
Have you considered maybe juicing and adding this to your diet? Your little cells may need boost. I listened to this juicing chap who was saying if a gold fish had dirty water would you keep adding chemicals to the water to try to clean it ( metaphor for meds) or would you change the water?
Hi pollianna , well that was me 2 years ago, and now...I don't smoke any more!
I self-inject with B12 every other day, I take multivitamins and minerals and additional folate every day, and vitamin D on prescription because of my osteoporosis of the spine (no cause given) and was also taking Risedronate on prescription for that but stopped fairly recently because of loose teeth and jaw pain (which were side-effects mentioned ).
I think my (vegetarian) diet is very good- lots of leafy greens, fresh veg., eggs, cheese, fortified kokomilk & cereal. Would be a stretch to blame vegetarian diet for all my deficiencies (B12, folate, ferritin) since I've now been a vegetarian for almost 40 years. Besides, if a vegetarian can't get enough folate, who can ?
Will soon be seeing an osteoporosis specialist to see if there's an alternative for me. Osteoporosis has improved within a year. I think because general improvements evident after 16 months of SI & supplements (blood levels looking good) -but likely will be told it is because of Risedronate ! Hoping to stand corrected on that one. Will let you know.
Aside from that, I've only got the Adult Metabolic Inherited Diseases consultant to revisit, with a story garnered from my DNA.
After 15 months off sick, I'm on a slow phased return to work: Phase 2 = two days per week !
No real concerns, but still would like some answers..... not giving up.
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