Hi, would just like to give you all an update regarding my blood results,
Made an appointment with my GP today to discuss my blood results, she all the results are fine, just my Thyroid is a little LOW.
I handed her the information on pernicious anemia and the symptoms but she just laughed, she said my bloods are fine a little low in places but most of the population would have bloods like mine.
I told her I feel like crap and have been deteriorating since Xmas tired, confused, emotional, angry, cramps and muscle spasms the list goes on and on.
When I saw her last week and she felt the lump in my neck she said it was my thyroid and that she would ring radiology and refer me for ultrasound also full body isotope and referral to orthopedic surgeon, that was last Wednesday, I attended today because the surgery had contacted me to make an appointment.
Since last Wednesday my doctor has not done referral for any of the above yet and is still telling me that my bloods are OK, just my Thyroid is a little low. She said what do you want, I said I want to be pain free and not to feel like I have been hit by a truck and it is parked on my head. I told her I understand the pain in my back, but severe cramps muscle spasms feel like I am seizing up, I told her that I am not feeling well and want it sorted.
She asked if I was depressed I said no not at all, my wife was with me she also told the doctor that IAM only functioning at 20% and that she is very concerned.
We have both left the doctors with no answers, but we have asked for me to be referred privately to see a endocrinologist so I will be awaiting the referral she told me not to be going online that I havnt got nothing wrong with my B12 and not Iron deficient that I have no amenia. That my bloods are good and no way do I have P A S, I asked if she was certain of that she said yes, I said we will wait and see but I am not happy with my blood results and havnt been for a long time.
Thank you everyone for your advice and support, I apologise for my bad Grammar as I am typing this in anger and frustration and pain.
Have you read the BSH Cobalamin and Folate guidelines? These make it clear that people who are symptomatic for B12 deficiency but have a within range B12 result should have an IFA (Intrinsic Factor Antibody) test and initial B12 treatment should start.
It's possible that your GP has not read the BSh Cobalamin guidelines. I gave my gps a copy of BSH guidelines .
b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate deficiency" should be on page 3 of listed guidelines.
Hi thank you for your help, my Doctor was not happy when I handed her the PAS sheet and said I have all the symptoms on that sheet bar one, she didn't even read it, even told me not to be reading stuff on the Internet and was trying to say I was depressed, several times she asked me if I was depressed but not once asked or looked at the information on PAS.
I am going to go to see a Consultant but I am going private I just can't carry on feeling the way I am 48 and I feel 98 at times always just washed out tired irritable it's gone on long enough.
When I was telling her that most of my bloods are very low she said nearly all the populations are, I said that's ok but they are not feeling unwell.
Insist on getting a copy of your blood test results ( they are obliged to let you have them . I was told that my B12 was normal , and it was low . I got my diagnosis of PA by going to a private GP at a Nuffield hospital . I thank God for the Internet. It has helped me back to health . You have come to the right place on this forum . Get those blood results and let us have them .
225 is a low reading . You can have exactly your symptoms with such a low reading - In Germany where I often visit ,a reading of 500 would be treated with B12 injections . With your symptoms you need injections asap.. You need to be tested for PA ( for antibodies to the Intrinsic Factor ) if positive you have PA . If negative , you can still have it. It is unfortunately an unreliable test . I am assuming that the doctor has already asked you if you have a vegan or strict vegetarian diet , which could result in a low B12 reading ,like yours as vitamin B12 is only obtained from meat , fish , eggs and dairy products . Do not supplement with b12 orally before you have been tested for PA. This would skew the results. If you have PA , you cannot absorb B12 in your stomach , only through injections . I have been on this forum for 2 years , and have noticed how many PA patients are fobbed off with anti-depressant pills . Treatment for PA is life long . If you are a member of PAS , enlist the help of the society - Get in touch with the number that you will find on the site . You will get help from Martyn Hooper our Chairman , who knows how to deal with your situation . . You need B12 injectios asap.
225 is low. I had a semilar reading, and my neurologist did not let me wait untill the follow-up appointment to tell me that but rang me at home and told me to go to my surgery and start the injections straight away that day. She had notified the surgery and managed to squeeze me in. I got the injections first every other day then twice in a week, then once a week and from then on once a month. I have a history of low B12, throughout my life, had an odd injection here and then after a few years again one or two etc. This time I had felt ill for month, dreadful headaches, feeling very dizzy and tremendously tired. Neurologists noticed that I had no feeling left in my legs up and over my kneecap. Wasn't aware of that myself, just found it hard to walk and keep my balance. I had a nasty fall down the stairs and broke my wrist, then another fall and broke my schoulder. I was told on a few occasions I was having a virus infection and would soon feel better, "these viruses can take it out of you and it might take a few weeks to see improvement". After a few weeks I was feeling no way better, even worse, I was being violently sick with my headaches / migraines every 3-4 days lasting 2-3 days in bed . Lost a lot of weight. Anyway, my husband decided enough was enough and demanded to be referred to a neurologist. Never looked back. I am now managing well, even though my injections are now changed from monthly to once in 3 month. I started to decline in health again but I have found a way around that and I also have now plucked up the courage to try and start self injecting. I put in the order today.
Hope you manage to get the help you obviously need!
During my bad period of health We hadn't not found this site so figured things out ourself, but what a wonderful help it must be to so many. Such good advise and you feel you are not going mad or made to believe you are depressed.
"several times she asked me if I was depressed but not once asked or looked at the information on PAS."
I believe letters to GPs have to be filed with medical records so if info is put into a letter, it's less likely to be ignored. Hopefully it will get filed and is then a record of issues being raised.
There seem to be so many of us on this forum that get labelled with depression. In UK I believe GP practices get extra funding for patients with depression.......
It's not unusual for people with b12 deficiency to have mental health issues. See link below for Martyn Hooper's blog post about mental health.
I found out that different areas of the UK may have their own local NHS B12 deficiency guidelines and that some local guidelines differ from the BSH Cobalamin Guidelines. Some differed from BNF (British National Formulary) in small details.
Might be worth you finding out what the local NHS b12 guidelines are in your area of UK. When I found out what they were in my area it helped me to understand why I had not got the treatment I expected. Some of these local guidelines have not been updated for years.
Local NHS b12 guidelines can be found by an internet search, a search on local NHS website possibly under haematology guidelines/policies, a FOI (Freedom of Information) request to local NHS website. If this fails to locate them then contact with CCG or equivalent or your MP may be able to help track them down.
Hi yes I am in the UK, she said my bloods are fine and most of the population would be like mine, but I said they are not unwell though are they I am,
I have no enjoyment in life, I love Rugby mad rugby fan 6 Nations are on I went to none of the games last year and not bothered this year my whole year would be based around the 6 nations, I have missed weddings missed birthdays and also funerals because the Rugby has been on, now I just have no interest,
I feel so tired go and lay on the bed but can't go to sleep, then I fall asleep wake up early hours in pain, or else I have to take medication to help my muscles relax and then that's it I can't move the next day.
Once again
Thank you
This all started by me telling the doctor 12 months ago that I had rib pain and that I am in agony can hardly breath, X Ray shown multiple collapsed vertabrae, she didn't know how I was walking around let alone working I told her in agony.
Came across an article on pubmeds last night that I knew I should have book marked because it contained a section talking about just how poor a diagnosis tool B12 serum is and the fact that going by results alone is going to miss 25% of people with a deficiency.
I really don't have an answer to GPs like this - who just will not work with their patients and will not look at clinical presentation and basically seem to want to stay in a state of ignorance continuing to allow their patients to suffer unnecessarily.
Really would recommend a) formally write to the practice b) join and contact the PAS and/or b12d.org
I feel for my poor wife and family, as I am on so many meds for pain relief that it just gets me threw the day with the pain manageable, but I am just worn out all the time memory has gone to pot can't concentrate, feeling week and dizzy my hands are always cold I have to wear 5 pairs of socks my nose is always freezing 12 months ago I was always warm and sweating would go out in tee shirts.
So I know since Xmas I have started getting worse and I said this to the doctor.
The only reason she done the bloods was because of the lump that she said is on my Thyroid she said it could be cancer and that it will have to be scanned.
Somebody else said that the B12 blood test can be up to 30% out so that could put mine in my boots, my wife said I am only going on 20% of the man I am.
I fly off the handle over stupid things always anxious and all the doctors say is are you depressed ?????? NO I AM NOT I AM NOT WELL LISTEN TO ME I AM 48 AND TELLING YOU I FEEL LIKE CRAP.
18 months ago I went to this doctor with memory problems as I was forgetting things in work, my wife said that could of been the start of it as I scored low on the memory test and was referred to see a consultant who said I had ADULT ADHD now I question that as the behaviour of somebody with PAS or Thyroid problems are similar.
Thank you for your help and advice but I appear to be getting know where and don't want to go down the road off complaints or fall out with my GP but that is what is happening.
and this is the relevant paragraph (underlined numbers are references to other studies).
Studies show 10%56,203 to 50%19,368 of truly vitamin B12 deficient individuals have serum B12 between 200 and 350 pg/mL, presenting clinicians with a diagnostic challenge.Based upon known biochemistry, specific tests can be ordered to help with this challenge. Cytoplasmic methylcobalamin is needed for MS-catalyzed Hcy methylation to Met, and mitochondrial adenosylcobalamin is needed for L-methylmalonyl-CoA mutase-catalyzed L-methylmalonyl-CoA conversion to succinyl-CoA.7,18,19,20,52,57,58,203 With low cellular B12, these reactions are impeded, elevating Hcy in the former and L-methylmalonyl-CoA, D-methylmalonyl-CoA, and MMA in the latter.18,20,285 Thus, HHcy and hypermethylmalonic acidemia (HMMA) are surrogate markers for low vitamin B12 cellular levels (ie, metabolic B12 deficiency).7,11,15,19–22,30,33,44,59,60,188,203,285,294,351,353,368,370,372,373,376,380,384,385 HHcy occurs with deficiency of pyridoxine, folate, or vitamin B12;19,306,355,370,386 usually, only deficiency of vitamin B12 causes HMMA.19,20,370 Hcy may be the more sensitive and MMA the more specific surrogate marker.17,20,38,40,151,156,285,387–389 Either surrogate marker is more sensitive than serum B12 in evaluating PA,7,19,373,390 and many individuals with HHcy have normal serum folate and B12 levels.38,39,42 When used alone, B12,371,375 TC II,371 Hcy,38 or MMA389 may be insufficient as screening tests, but in combination, normal plasma Hcy and serum MMA rule out B12 deficiency in virtually all cases.19,390 Although the post-methionine load test is twice as sensitive as basal Hcy in detecting HHcy in individuals with AD,391 it is not recommended as an initial test.17
It is very frustrating that GPs think that they can do their job just by looking at numbers on a report - and I think that if it was better known just how problematic the B12 serum test is - I think if medics were aware that a test result was likely to miss 25% of the people who are affected by the condition it would radically alter their behaviour in interpreting and using the results.
Totally understand not wanting to get engaged in a conflict with GP - though have to say that writing to a GP doesn't have to be a confrontational situation and with some can be an effective way of providing them with the space to really reflect on what they are doing.
Joining PAS and contacting b12d.org also doesn't have anything to do with confrontation with GPs but can be about access to information and resources that help you and those around you understand what is going on with B12 deficiency. The role of both charities involves raising awareness of the conditions leading to B12 deficiency and the importance of the correct diagnosis and treatment... something no GP should be against.
There are a lot of materials aimed at medics on the PAS website and also recordings of the last PAS conference - which included Dr Harrington from the assay labs at St Thomas hospital in London giving a fascinating presentation on exactly how limited serum B12 is as a diagnostic tool and looking at other tests that can help
Understand how you feel--- I felt like screaming at my doctor that a year before I could walk 4 miles, now I could barely manage 400 yards. Total disinterest.
I also gave a goitre. It was scanned,must nodular, no sign of cancer but again no one seemed interested in if this was affecting my health.
You can sometimes see a private consultant without GP referral. If your GP is writing a referral letter, I'd recommend getting a copy of the letter and taking it with you. You don't need your GP to make you a private appointment, you choose who you see and make appointment direct. Taking her letter means the consultant has some info and it may not arrive in the post.......
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Update on Visit to Doctor
Daughter still struggling Update.
Update on blood test - sorry long post
