letter to GP and question

letter to GP and question

I haven't posted in a while, I have really been through hell. The GP is just not listening to me. I have stopped taking the B12 tablets he gave me, I am now 2 weeks off them.

I have crashed and just feel like S***. Question I am still taking my folate, should I stop this whilst i am off B12?

I have only come off it, as I am going to get another private blood test done to show my active B12 and B12 levels when i stop supplementing.

I have penned a 9 page letter to my GP highlighting the BSH guidelines and NHS guidelines stating that i should be on injections etc etc what good it will do I have no idea.

anyone else not had a very good reply back from their doctors if they have written a letter to them.

I am scared......

only good out of this my mum has decided to back me now, after her believing the doctors that i was depressed

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  • Hi Cazzie91 it's good that you've got your Mum "on board".

    Would your Mum be willing to go with you to your doctor? If you write out a list of your neurological symptoms that she can verify he is not likely to "pooh pooh" them in front of a witness.

    It might be best to take the letter with you and hand it to him whilst you are there - unless of course he agrees to give you the injections you are asking for, in which case keep hold of it.

    Were you not feeling any benefit from the tablets? Do you know your Folate and Iron levels?

    I am not a medically trained person but there are others on here who will give better advice. I only know that it's best to be firm and calm during the appointment as this is something I had to do with my "one size fits all" G.P.

    I wish you well

  • I felt a bit better on the tablets, but i was still getting tinnitus, and night cramping, pain in legs etc i just felt like i had a bit more energy, but i should of been offered injections as my levels dropped to 196 p/mol.

    I am going to give it to the practice manager. I have given all the symptoms and have highligted the ones relating to me.

    My mum has offered to come, but she is a bit of a yes women. She wont argue she will just listen to the GP i had to fight to get her on my side.

    He has told me he doesnt want to give me injections his words were i am not going to stick a needle in your bum to make you feel better.

    Folate 3 ug/l - 3.9 -25.80 ug/l

    Ferritin 38 ug/l - 10 -150 ug/l

    I managed to get my iron up to 38 from 32 in a month. This to me wasnt good enough, so i am having to pay private to test for coeliac as my brother and mum have it and i have symptoms of that too!!

  • You need to get your Folate higher too and as for the injections I've had over 600 during the past 45 years and they need to be injected into a muscle and for me it's always in an arm.

    If your Mum was there she needn't say anything - just be a third person, although if she were asked whether she'd witnessed you in pain she could just say "Yes".

  • Yes sorry i am currently taking 5mg of folate acid daily, to try and get it up.

    Yeah i suppose, could say to her only speak when spoken to haha.

    I am desperate for injections, just wish they would listen to me. Instead of just coming back to depression

  • Hi Cazzi

    You are definitely not alone there are so many of us have had the same journey😠you need to have your test results and find a way through this for your health. You have a B12 deficiency so it needs a proper diagnosis. You also need injections in line with the guidelines sadly I suspect your gp may refuse to accept any private blood tests. Have you spoken to the Pernicious Anemia society as they can intervene on your behalf with your gp. Join online and speak to them before you do anything else and then you will have the best chance of winning this battle.

    Mark

  • He accepts private blood tests as this was how i was diagnosed. I am already part of PAS i was going to get in contact with them if nothing came out of the letter to my GP. Everyone at work has told me to move GPs but i feel if i move now i may be right from the beginning again with them. At least my GP knows i have a B12 def

  • I found the PAS very helpful when I needed advice about my grandson. Are you treating the low Ferritin - both Folate and Ferritin need to be halfway in range to feel well I have read.

    Martyn Hooper of the PAS - did tell me that test results can be skewed for many months after stopping B12 - and it does of course vary from person to person.

    VitD - has that been tested ? When everything is low in range - of course you will feel depressed - even your GP :-)

  • HA he is probably depressed from seeing me all the time!

    Yes, I am taking iron tablets and folate tablets. Ithey say wait 4 months when coming off supplyments, so i don't know how long i want to wait.

    Yeah I will contact him if all else fails. I am determined to get this sorted even if it near enough kills me hahaha

  • I have read that taking VitC help iron absorption. Which tablets are you taking ? Some are better than others :-)

    I can see your VitD needs to be around 100 - so supplementing would be a good idea. I would take Healthy Origins 5000 IU's from Amazon. the Docs never prescribe enough. Also take VitK2 MK7 too - which ensures improved calcium goes to the bones and does not lurk in the arteries for future issues ! VitD3 is not expensive ....

  • "so i am having to pay private to test for coeliac as my brother and mum have it and i have symptoms of that too!!"

    I am curious as to why GP is not testing for Coeliac disease?

    I think there is advice in UK that first degree relatives of someone with Coeliac disease should be tested for Coeliac disease. I'll try to find some links.

    See section 1.1 in link below which mentions testing for first degree relatives.

    nice.org.uk/guidance/ng20/c...

    patient.info/doctor/coeliac...

    coeliac.org.uk/coeliac-dise...

    Link above mentions that NICE recommends Coeliac screening for close relatives of a sufferer.

    Coeliac disease can affect the gut and therefore lead to some nutritional deficiencies including B12 deficiency.

    It's possible to still have Coeliac disease even if tests for Coeliac antibodies comes back negative.

    coeliac.org.uk/coeliac-dise...

    In UK, I think GPs are supposed to test IgA (an immunoglobulin) levels in someone with suspected Coeliac disease, as someone with IgA deficiency will not make the Coeliac antibodies and may need alternative tests for Coeliac disease. I know from personal experience that IgA testing is not always done.

    See Section 1.2.2 in NICE guidance link above, which mentions IgA testing.

    "I have penned a 9 page letter .......what good it will do I have no idea. "

    Have you looked at this link about writing letters to GPs about B12 deficiency? The person who runs website can be contacted by e-mail.

    b12deficiency.info/b12-writ...

    Auto-immune conditions

    I have read that having auto-immune conditions in the family can increase a person's likelihood of developing one. With Coeliac disease in the family, I wonder if GP has considered the possibility of an auto-immune cause of B12 deficiency eg PA (Pernicious Anaemia)?

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    Have you had tests for PA? Intrinsic Factor Antibody (IFA) test is not always reliable and a person can still have PA even if IFA test is negative. See link below.

    stichtingb12tekort.nl/weten...

    If you've not read it already. I'd recommend reading fbirder 's summary of B12 documents. Link to summary in third pinned post. Lots of useful quotes about B12.

  • The GP's in my surgery have all clubbed together and said that I am just depressed. The doctor reluctantly gave me iron and folate tablets and i had to fight for B12 tablets even though I kept saying i want injections he wouldn't budge off the tablets as he just kept saying i am depressed, took the tablets for a month gave me a little more energy but i was still having the neurological symptoms

    I had my GPC tested and the lab stated on my blood test they do not test for intrinsic factor if GPC is negative. I tested myself yesterday, I didn't eat gluten all day then I had it with my meal. My stomach was unbearable all night and I kept waking up with stomach cramps, and I woke up with my usual rash on my face. (I don't have lupus already been tested for that)

    Yes the NHS guidelines state that anyone in the family of close relation should be tested for coeliac. The nurse at the hospital yesterday told my mum that it is vital that i get checked but the doctor just won't do anything more for me

  • clivealive Marz Sleepybunny I have attached my latest blood results after supplementing with the b12 tablets for a month that he gave me

  • Hi again,

    Have you rung the Coeliac UK helpline? They might have some useful advice.

    coeliac.org.uk/home/

    Coeliac UK helpline 0333 332 2033

    There is also an online assessment of symptoms

    isitcoeliacdisease.org.uk/o...

    "nurse at the hospital yesterday told my mum that it is vital that i get checked * but the doctor just won't do anything more "

    * for coeliac disease

    So sorry to hear about GPs reluctance to test for Coeliac disease and find it hard to understand as a diagnosis of Coeliac disease could explain at least part of why you have B12 deficiency symptoms.

    Unhappy with treatment?

    CAB Citizens' Advice Bureau

    citizensadvice.org.uk/healt...

    HDA patient care trust

    A UK charity that offers free second opinions on medical diagnoses and treatment.

    They are usually quick to respond to enquiries.

    hdapatientcaretrust.com/

    HDA pct helpline 0207 935 8366

    "The GP's in my surgery have all clubbed together and said that I am just depressed."

    You have my empathy as I had difficult experiences at one surgery. I deeply regret staying with that surgery for so long. I am now with a surgery where I am treated kindly with a GP who is willing to listen.

    "I had my GPC tested and the lab stated on my blood test they do not test for intrinsic factor if GPC is negative"

    Was it a private test for GPC?

    I think the BSH Cobalamin and Folate Guidelines do not recommend GPC testing as a diagnostic test for PA (pernicious Anaemia).

    "I woke up with my usual rash on my face"

    What does your rash look like? There is a rash that can be associated with coeliac disease ...called dermatitis herpetaformis

    coeliac.org.uk/coeliac-dise...

    patient.info/doctor/dermati...

    dermatitisherpetiformis.org...

    nhsinform.scot/illnesses-an...

    I did read that dermatitis herpetaformis does not always present with blisters.

    Have you ever seen a dermatologist?

    On your FBC Full Blood Count result I can't see a result for MCH (mean corpuscular haemaglobin)

    labtestsonline.org.uk/under...

    I am not a medic just a person who has struggled to get a diagnosis.

  • I took the self injecting root as my doc didn't want to hear or do anything about low B12 except the norm (6 loading doses then 1 every 3 months) which was far too less and made me very sick.

    I personally felt self treatment was the only way.

    Hope your doc helps after the letters, if not self injecting is not too bad. Hope things get better after your blood test.

    Don't be scared B12 deficiency is easily treated. I found that keeping the following in check and at high range helps greatly. B12, Folic Acid, Iron and Vit D.

    I'm not sure about carrying on with Folic Acid as it might affect your blood test but there's others here who will give you better advice and you'll get great support. Give it some time and all will be fine.

    Wish you well.

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