From 29th July - hmm - they are the results the GP decided to treat me based on
It's taken me this long to get them
B12 128 in a range 130-1100
Folate 2.2 in a range 2.7-15
Zinc 9.9 in a range 11-24
So I think they are lower
However what they will be 1 week after 1 injection a week for 6 weeks I just don't know
I have printed off the BMJ article but I was a bit ingenuous today when I had my injection as I chatted about the 'new' article I hadn't read (because I couldn't download it) to the nurse - who offered to download it & print it out for me
Symptoms:
Bone pain
Joint pain
Muscle & connective tissue pain
Pins & needles
numbness
neuralgia
Mouth Ulcers
3 miscarriages
Incontinent after my baby
Memory lapses
concentration losses
Depression/anxiety (particularly anxiety about seeing the GP)
Very fast bowel transit time
Itchy ears
Diagnoses: CFS/FM/IBS
Bit sad really
Written by
KTMac
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Hope you are also getting folic acid as you are also folate def. What a mess for you, hope you will feel a lot of improvement with the addition of B12 and folic acid, perhaps all your other issues may well improve and the original diagnosis of CFS/FM/IBS will be replaced with B12 def only, and treated satisfactory for you! Marre.
I have a dip for about 4-6 hours after my injection, then I slowly start to feel more aware/switched on/awake this continues to rise over about 2 days, stays the same on the next day and then I drop on the 5th day with the 6th & 7th stabilising
The second week this didn't happen & this is week 5, so we will see
I'm really not sure what they will be looking for in 2 weeks when they repeat the blood tests
Did they print out the article or do you have to go back for it?
If they print it out after you leave then they'll read it!
The reason they are supposed to do the blood test is to show that your b12 level is going high enough. The problem is that if it is 1 point into the normal range they will consider that to be high enough! What they don't understand about 'high enough' is that the loading doses are meant to push your levels up to a point where you cannot fall back into the deficient range when they expect you to wait another 3 months for a jab.
All a complete nonsense of course because it's unlikely they will test you next time before giving you a jab.
I just hope they read the article and the symptoms in your medical records are accurately recorded.
But are you also on folic acid tablets? Your result shows you are deficient in folate, you need to have that addressed as well as the B12 deficiency. Perhaps they first want to see your serum B12 up before addressing your other deficiencies? I do not know what other medication you are on and if the blood tests are a regular thing for you anyway? It is normal to have a blood test after loading B12 to see if all has settled back to normal, MCV HB neutrophils all can go out of range with B12 and or folate deficiency.
Yes, but are your neutrophils hypersegmented (which is what it will say on your blood test results!)
I saw something interesting today that said MCV usually has to get to 110 before the anaemia shows. By which time I think most people will be more concerned about the paralysis!
I still think that ME is sometimes a precursor to b12 deficiency. Sometimes it's just b12 deficiency!
I was ill in about 87 with a similar thing. Retrospectively they decided it was Yuppie flu.
Must admit it was more a joint problem than a muscle problem - but I think all these things are linked.
Pah - your MCV was only 102 - you missed your target by 8! If you'd have got it up to 110 they might have been impressed.
Did you not know this was the 'how sick can you get before we can stop ignoring you' game?
Your MCV to high is often a sign of B12 and or folate def, can also be other things like thyroid function etc, retesting blood after treatment has started is often to see if MCV has gone down, neutrophils normalised etc, this is a good link that explains blood tests well I think,, see:
If you use the search option on the old PAS forum you can find a lot about ME and B12 def and how the one can often have been a mistake diagnosis after B12 treatment has started etc.
Good to see you are on folic acid tabs and I sure hope you are going to feel a big improvement in not to long a time now you are on B12 treatment. I noticed little improvement initially but after 3-4 months I became dependent on B12 to feel well and was just so glad to get energy back! Hopefully you will notice a big improvement soon, but be patient it can take time.
You mention the search function on old site which leads me to ask how I can find search function on this current site? I've looked all over site but can't fimd where to go to enter a search term. Any help is appreciated!
Right hand end of the green bar at the top of the screen. On a PC there is a box which says "search HealthUnlocked", on a Smartphone it's a little magnifying glass.
I've found no way of easy searching on this site, the search health unlocked option top right of page is far to wide a search most of the time. This is not my favourite forum set up..but it is what it is.
I don't have the rash for lupus & I haven't any of the other blood things for anti phospholipid syndrome
But I'll mention them next time I see a GP
Hi KTMac,
You don't need a butterfly/ Malar/ any rash to have Lupus. It's called the great imitator as it mimics so many disorders and can affect any part of your body.
It can cause recurrent miscarriages and a lot of your other symptoms are typical including mouth ulcers, brain fog and joint/ muscle pain to mention just a few. It can go hand in hand with anemia and low B12.
I have many, although not all, of your symptoms ( B12 was 75, ferritin 7 ) and have had real problems getting a definitive diagnosis. The current toss up is between Lupus and a large vessel vasculitis. I responded to high dose steroids and immunosupressants ( Methotrexate and Mycophenolate ).
I have been following this site for a few weeks now. There is no doubt that low B12 can cause a lot of symptoms but they are common to lots of other diseases as well. I would hate to think that symptoms were being totally attributed to B12 deficiency when there may be another underlying treatable illness ( which can also cause low B12 ) . Good luck with your GP.
Thanks for that - the link didn't work but it was easy enough to copy and paste.
Okay, they aren't saying that Lupus causes b12 deficiency and anaemia - they are saying that b12 deficiency and anaemia are found in Lupus patients (+ two other arthritis groups)
The suggestion is not that Lupus is the cause of b12 deficiency, anymore than it is suggesting the two arthritic groups are the cause of b12 deficiency - it's simply identified that b12 def (and folate to a lesser extent) are found in patients with this diagnosis.
The implication would be that it is actually the other way round.
But what they are also saying is that despite the incidence of anaemia being high (which in b12 deficiency would indicate a serious functional issue) the functional association is not high amongst these groups of patients.
Now they aren't saying that they established this fact relative to the patients symptoms but against the values of the tests, in particular the homocysteine and MMA, which only fell slightly when the patients were treated with b12. The conclusion was drawn that only 26% of the patients had a true functional b12 deficiency.
Again, we are back to how to effectively establish if a patient has a functional b12 deficiency and how to measure (whichout speaking to the patients, of course) if treatment has improved symptoms.
Now I could sit here and write a dissertation - but I'm sure you wouldn't want to read it - the upshot is that b12 deficiency may be implicated in Lupus not that Lupus causes b12 deficiency.
We know the metabolic pathways and the disruption to DNA that b12 deficiency causes - but they don't in any of these other illnesses - they just identify them by a list of diagnostics. Which is why we have ended up with a bucket load of illnesses of unknown that nobody can do much about.
Because doctors don't understand the metabolic pathways of b12 and what damage is caused, it gets overlooked and undertreated all the time. So then they have to find a reason for the reason patients are left with symptoms. Welcome to Lupus. Or, it would seem, a thousand different illnesses - all, funnily enough linked by one factor - a b12 deficiency.
It's a mess out there.
Sorry to go on - but it's an interesting article.
I wasn't saying that Lupus caused B12 deficiency or the other way round, the anecdotal evidence is that sometimes they run in tandem,the same is very true with Vit D deficiency. The point I was making was that KTMac has a lot of the symptoms of a Lupus and APS and had these conditions been ruled out.
I think it's a mess out there for a whole host of rare autoimmune conditions where the symptoms can be common across disorders and there is a lack of research and truly specialist Dr's.
I totally agree with "I think it's a mess out there for a whole host of rare autoimmune conditions where the symptoms can be common across disorders and there is a lack of research and truly specialist Dr's"
My brother has RA & this month he has had to be off his main drugs (for various reasons) & his doctors (in Sweden) have said OK, lets do a full blood work up as if you were a new patient & just see where we are
I suppose the obvious question to ask is 'what is autoimmune?' It's simply a description (yet again!) of the body attacking itself in a variety of different ways. It's another 'unknown.' The problem is that none of these illnesses appear to be being examined as a whole - they are looked at as rheumatalogical, haematological or whatever. So what links them?
We know with b12 deficiency there simply are no experts. There just aren't any. Don't most us start off when we are diagnosed by hitting the net, getting confused, and then trying to find an expert or specialist - and what do we come up with - zilch.
How on earth anyone can define themselves as being specialised in b12 deficiency (when we are in a face to face environment) when we can't even find any on the internet, I don't know.
And not only do we not have any experts, the damage sustained by patients is not considered serious either! Whether we are talking MS or b12 deficiency, we are talking serious neurological damage - and it is completely dismissed.
The GP admitted this time, that it was probably auto-immune
The Oral Health Dept at the Hosp suggested it would be unlikely that an injection every 2 or 3 months would help me
No-one is looking at me as a whole - I am simply CFS for some people, FM for others, IBS for the gastros, Ulcers for oral health & some other bits & pieces which are "depression"
I'm starting to think that 'autoimmune' is the new 'cognitive' - it seems to be all the rage.
At least they will probably be able to lump most of your conditions under one umbrella and then start chucking different drugs at you to see if any actually work.
I can totally relate to the frustrated and angry bit!
Auto immune disease is very complex, some patients never get a definitive diagnosis but are treated on the basis of their symptoms. You are right when stating that no one looks at you as a whole, I have had the same problem trailing to different consultants each looking at their own body " bit ".
A starting point maybe for your GP to run some auto immune bloods, ANCA, ANA, complement, ESR, CRP etc. ( apologies if these have already been done ). I hope you can receive some truly holistic care soon. Have you ever had a rheumatology referral?
Yes, it would help if someone started to look at these 'illnesses' in their entirety.
When you hear someone say 'I have X number of autoimmune conditions' what I tend to think is, you have 1 autoimmune problem that is causing several different reactions.
your symptoms are almost identical to mine. your fast transit times, are they triggered by anything? ie stress? exercise? do you find the injections are helping yet?
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