and went back to it with news of my hubby's blood results as asked but no one has come back to answer. So I thought I would start a new thread with the results.
Thanks in advance for any help.
Vitamin B12 178. RANGE (145 - 941)
Folate. 3.35 (3.00 - 20.00)
Total white cell count. 7.2 10*9/L (4.0 - 11.0)
Red blood count. 5.10 10*12/L (3.50 -5.50)
Haemoglobin estimation. 156.0 g/L (130.0 - 170.0)
Haematocrit 0.47 L/L (0.33 - 0.50)
Mean Corpuscular Volume. 92.0 f/L (80.0 - 100.0)
" " Hgb. 30.6 pg (27.0 - 34.0)
" " Hb conc. 332.0 g/L (315.0 - 345.0)
Red Blood cell dist width. 14.5 % (8.0 - 16.0)
PLATELET COUNT. 133. 10*9/L (140 - 400)
Neutrophil count. 5.2 10*9/L (2.0 - 8.0)
Lymphocyte count. 1.3 10*9/L (1.0 - 4.0)
Monocyte count. 0.5 10*9/L (0.1 - 1.0)
Eosinophil count. 0.2 10*9L (0.0 - 0.4)
Basophil count. O.0 10*9/L (0.0 - 0.3)
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jilly111
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Hi Kimber, so kind of you reply. Sorry, I can't understand about editing with mcv and Hgb number. At the moment the results not with me I will have to check tomorrow and reply on that if I can.
Yes it seems you are right re letting patients die! Here in the UK they are IMO making everything impossible to obtain because they are cost cutting and it seems if one is elderly they might hope to dispose of us by this!!
All of his results given are those I posted so if you didn't see iron panel then they wouldn't have done it. Even the dr's receptionist said all was normal when asked and I told her they weren't! So annoyed at the NHS not even thinking about low vitamins iron etc. They don't mind dishing out expensive tablets for everything else but won't start at basics...like if bloods are on low side..then investigate.
Hubby has supposedly been so called urgently referred back to consultant for the elderly but no appointment yet. I'm not stupid .... They are hanging this out so he doesn't get the injections...bstrds!
It is so unjust and I hate it. I keep mailing NHS bods who pass the buck...surprise, surprise! That's what we put up with here because of them 'saving' money ha ha!
At the end of my tether with it all...I suffer chronic ill health myself so stressing me out...sorry to say. Anyway thank you for your help xx
Hi jilly111 do you know what the range <from - to> was used for the B12 test and dare I ask how old (I'm 76) your husband is?
I'd love to know what guideline the doctor was quoting for "not treating over a certain range. " I've never heard anything like it....
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
google.co.uk/url?sa=t&rct=j...
Was your husband's Folate tested?
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Hi Clive, yes I answered on that post but didn't have the results and ranges until now. The info is above and amended through my typo's now....so hopefully someone can explain what they mean to me. Thanks ever so much for your interest.
Hi yes sorry it those two figures were typos (what am I like!). I have amended them now, does that give anything about low B12 as he still hasn't been diagnosed. I'm losing the will to live here...ugh.
Flowchart outlines when PA and Antibody Negative PA can be diagnosed. Flowchart also makes it clear that patients symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test.
Has he had an IFA test?
IFA test can help to diagnose PA (Pernicious Anaemia) but is not always reliable and it is still possible to have PA even if IFA test result is negative/normal range. Some UK GPs may not be aware of BSH guidelines above, I gave mine a copy.
Sad to say I am cynical about some health professionals attitudes towards elderly people. I think it's so easy to write things off as being due to old age.
Link about What to Do Next if B12 deficiency is suspected
Hi Sleepybunny, Firstly may I thank you so much for your extensive and very helpful reply, I will be going through those links today. I will also answer the questions you've asked, but I will fill in details first about hubby and this problem.
Hubby soon to be 82, diabetic (diagnosed 1993) on insulin and well managed. Has peripheral neuropathy and vascular problems. Had mild stroke 2007 - also probably TIA Nov last year but can't get an affirmative from consultant for that. Regarding what we feel is his vitamin B12 deficiency: He has presented for at least 10 years to GP and from last year to Elderly Medicines consulant with
EXTREME FATIGUE - BREATHLESSNESS - EXHAUSTION - MUSCLE WEAKNESS - LOSS OF BALANCE - DIZZINESS - DEPRESSION - UNEXPLAINED NOSEBLEEDS - NERVOUSNESS - TREMOR - HEART "FLUTTERINGS" - GENERALLY FEELING UNWELL - DROPPING TO SLEEP IN THE CHAIR (ANYWHERE REALLY) FOR NO REASON and wasn't tired! .....
All the above symptoms have worsened over the years until a few weeks ago after going for his blood test for B12 (which I requested for him) he collapsed in the chair and fell asleep for 5 hours! He has been going downhill since then. As for GP/medics with each visit he has been sent for x-rays, CT SCANS, Ultra sounds and heart tests ALL NORMAL!!All repeated over the years when presenting with his symptoms.
The medics have never linked or mentioned B12 deficiency. His platelets have been low since at least 2007, at first he had monthly bloods for that BUT we never rec'd results and nothing was commented on. When we asked why they were low we were told "we don't know" and no more has been said.
My daughter asked the consultant last year for my hubby to have a a Homocysteine test. The result was 15.4 and in his letter to hubby's GP he commented " I cannot find any evidence that treating a mildly high homocysteine level reduces the incidence of the various vascular complications with which hyperhomocysteinaemia is associated. Nevertheless I cannot see any harm in the patient taken on over-the-counter multivitamin which contains folic acid and vitamins B6 & B12 to see where this improves his general wellbeing".
In a separate letter to me he wrote that the next step was not entirely clear to him but taking a vitamin supplement that contains folic acid will do no harm!!!
This is when I began researching the whole B12 thing and we defintely feel he is deficient and urgently needs treatment. He has NOT been diagnosed with deficiency even at this late stage and the GP wouldn't give him the injections when we asked last week because he said, ...if he didn't follow the NHS guidelines for the range of this test, he would be struck off. He has apparently now referred hubby back to aforementioned consultant.
I am losing the will to live as no one has contacted us as promised regarding an appointment or seeing someone for treatment.
Your questions answered
Has he had an IFA test? I don't know as nothing has been said and we haven't had any results
Has GP commented on low platelet result? The only time he commented on this was years ago when he told us about it. Nothing since.
Has GP commented on folate result as it's close to bottom of range. NO
Has he had a ferritin test or a set of iron studies? Not as far as we are aware as I know it's a separate test from FBC
Has he had tests for Coeliac disease? NO.... (I am coeliac so I know he hasn't BUT he has tried gluten free diet which helped his depression)
You said....
"Sad to say I am cynical about some health professionals attitudes towards elderly people. I think it's so easy to write things off as being due to old age."
ME TOO... and they say on the N.I.C.E site they do not discriminate anywhere even ageism. Hmmm....IMO..... only in writing??
Sorry for the long post but I thought it might help you to comment on this awful dilemma we are going through, hubby desperately needs help which is not forthcoming and has never been regarding this matter. Thank you so much for your time.
Again these are available privately in UK. Any B12 supplementation prior to these tests could affect the results.
"daughter asked the consultant last year for my hubby to have a a Homocysteine test. The result was 15.4 "
There is a paragraph in the BSH Cobalamin and Folate Guidelines (link in above post)about Homocysteine. It mentions the possibility of hyperhomocysteinaemia at levels above 15umol/L.
My understanding is that you or another adult can act on his behalf if he gives signed written permission but suggest checking if this is true.
My experience is that it is relatively easy to get records/copies from GPs (England) but much more difficult to get copies/records from hospitals, may involve form filling and visit to hospital records office. The only reason as far as I'm aware for GPs to refuse is if they feel that giving results could cause harm to patient. Some UK GP surgeries have online access to a summary of results/records. GP website will have details of this. It is only a summary however, and may not have all the info wanted. A GP has to sign off on requests for test results/records so it may take a few days for copies to be ready.
It is free to just view records/test results in UK and as far as I know there is nothing to stop someone taking notes from what they see on screen ( check this though) but he would need to make an appt with surgery, possibly with practice manager to view them.
Power of Attorney is sometimes used for people who lack capacity to make own decisions.
"we defintely feel he is deficient and urgently needs treatment"
As I said above, PAS may be able to offer support if he/you are a PAS member. At very least they can pass on useful info. PAS can sometimes intervene on behalf of members by writing letters.
Is there a history of B12 deficiency/PA/other auto-immune diseases in his family? If yes, is GP/specialist aware of these and have they been excluded as possible diagnoses?
"Has he had a ferritin test or a set of iron studies? Not as far as we are aware"
I'm rather surprised that he hasn't had at least had a ferritin test. Low iron can lead to smaller red blood cells(Microcytosis). Low B12 and/or low folate can lead enlarged red blood cells (Macrocytosis).
If his iron levels are low then this could mask the effects of low B12 and low folate on red blood cells which might be why his doctors are not considering B12 deficiency as a possibility. See links in my post above about Macrocytosis and Blood Film/Full Blood Count.
"Has he had tests for Coeliac disease? NO.... (I am coeliac so I know he hasn't "
NICE guidelines Coeliac disease 2015 (link in post above) recommend that anyone with unexplained B12, folate or iron deficiency should be tested for Coelaic disease.
The NICE guidelines also recommend that first degree relatives of someone with Coeliac disease should be tested.
Coeliac blood tests would need someone to be eating plenty of gluten daily for at least 6 weeks prior to any Coeliac blood tests for them to be reliable.
NICE guidelines above suggest that anyone with suspected Coeliac disease who does not want to start eating gluten again should be referred to a gastrointestinal doctor.
Two first line tests are recommended for people with Coeliac disease in UK.
1) tTG IgA
2) Total IgA
My experience is that in UK, the Total IgA test is not always done but in my opinion it's an important test. Someone who is IgA deficient will need different diagnostic tests for Coelaic disease.
In a nutshell, my understanding of current UK B12 guidelines is that if someone is symptomatic for B12 deficiency in UK, they should be treated. I suggest looking at letter writing link in my post above.
Consequences of Under Treatment of B12 Deficiency
Is his GP aware of the neurological consequences of under treating B12 deficiency?
"no one has contacted us as promised regarding an appointment or seeing someone for treatment."
I learnt from experience that sadly it was up to me to chase up appts, test results etc.
Other ologists/health professionals
Sometimes the route to diagnosis of b12 deficiency can be through a variety of specialists although sadly I think lack of knowledge about B12 deficiency occurs in many medical specialisms.
Podiatrists
Has he ever seen a podiatrist/chiropodist if he has neuropathic symptoms affecting his feet? In UK, podiatrists with correct training are allowed to prescribe B12 injections.
Sleepybunny. Thank you again for your kind help and information. We are in England UK. Hubby has low vitamin D and on supplements but they rarely test his levels....such is our GP surgery! He is under podiatrist and they were concerned about his vascular problems and referred him to consultant. The vascular consultant dismissed things and said there was nothing he could do!
Hubby not tested for thyroid as far as we know, or if so it was some years ago. He has diabetic mild retinopathy that we do know. When he was first diagnosed with diabetes (1993) he was on Metformin for a couple of years...then on insulin three times a day from then till now. Never been tested for Coeliacs.
Our surgery not very forthcoming with medical things it seems when we get old is worse! Costs them too much we suspect! Hubby did see a Haematologist some years ago, can't quite remember what that was for nor results of it. Could have been for low platelets but again cannot recall.
I think I've answered most of the things you've asked so thank you again for your help.
Because hubby has been so bad with collapse and fatigue my daughter found at Holland and Barrett B12 supplement in the form of a spray (which is absorbed quicker in the mouth). He has been using it for a couple of weeks because medics are doing nothing. He NEEDED something in our opinion so he is going to stick with that until he can.... IF he can.... get injections.
As I wrote to consultant last week.... I can accept someone dying from usual sort of illnesses but what I will not accept is my husband dying from a bloody vitamin deficiency when it could have been avoided years ago had they listened to us and correlated bloods with symptoms!
Might be worth him getting a complete set of medical records.
In UK, maximum cost is £50. You might then be able to see what tests he has had in the past and possible letters from consultants to GPs. See Links about Access to medical records.
"He has been using it for a couple of weeks because medics are doing nothing"
I understand why some people decid to self treat. I was unable to get NHS B12 treatment for many years and felt forced to self treat.
One problem is that supplementing with B12 before a confirmed diagnosis, can make it very difficult to get a diagnosis.
"Our surgery not very forthcoming with medical things it seems when we get old is worse! Costs them too much we suspect!"
It is your husband's right to ask for referrals to a specialist doctor he thinks would be helpful but a GP does not have to agree to the request . I used to put referral requests in a polite, brief as possible letter to GP along with evidence /reasons to support the request.
"He is under podiatrist"
Has he asked podiatrist if they can prescribe B12 injections for his neuropathy and if not why not....?
As I mentioned above, in UK, podiatrists with right training are allowed to prescribe B12 injections.
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