Had enough

[helen1978]

I have had b12 injections (hydroxocobalamin) every 3 months for the past 12 years,since january i have got very ill i have lost 3 stone since february,muscle wasting,fast heart beat,burning in legs,my legs feel like jelly along with other scarey symptoms i really feel like i wont last much longer,i have seen all the gp's in my practice who all say i cant have my injections any sooner than 3 months i believe i need loading doses again but my doctors just keep fobbing me off with depression which i am very depressed with the pain and being ill since january,i ened up down A&E last night because i cant stand feeling like this now i feel like i am about to die and all the doctor there did was referre me to the A&E's counseller who has put me down as mental health,i really cant stand being this ill now and believe my body is attacking itself i have even tried self injecting subcut but no relief i really dont know what to do anymore but i really cant stand feeling like this now i am really suffering badly and dont want to live like this now,my gp wont even send me to gat the muscle wasting investigated she wants to diagnose cfs which is a cop out diagnoses because she cant be bothered and just sent me home to get on with it,why dont dr's listen all these years looking at my medical notes i have been under treated and was told by a dr who knows about b12d that i should of been on monthly jabs so god knows what damage or other things i have linked to this awful illness i have,as i am suffering and in pain i really dont think i can live my life like this anymore i am only 34 with 2 young kids i just feel like ending it now to get away from the pain and sufferig of this illness and ignorant gp's

[nostoneunturned]

It is nonsense for your GPs to say you cannot have B12 injections more often than every three months. They should be treating you at the very least in accordance with the British National Formulary which says clearly in Section 9.1.2 Drugs used in megaloblastic anaemias; then on opposite page under Hydroxocobalamin; Page 593 in my September 2011 edition.

"Pernicious anaemia with neurological involvement, initially 1mg on alternate days UNTIL NO FURTHER IMPROVEMENT then 1mg every 2 months"

The upper case letters are mine. to draw attention to continuing injections, that is, 1mg every second day until no further improvement, for treatment for those with neurological involvement, which you definitely have with burning feet, legs like jelly, etc. The BNF clearly means that you should be having injections every second day until you neurological symptoms clear up, then 1 mg every two months. Your GPs obviously cannot read, probably did not bother to check up their assumptions

You can go to:

b12d.org

go to the menu left hand side, follow the link concerning treatment protocol, and the BNF guidelines can be read/printed out from there, print them, give to your doctor.

Please join the Pernicious Anaemia Society:

perncious-anaemia-society.org

and use the medically qualified helpline, or get to speak to Martyn Hooper who started the PAS as he knows personally how dire PA treatment is owing to ignorance of GPs. Knowledge gained on these sites saved me, I firmly believe.

lt is distressing to read your blog, you must feel dreadful; did you know that you can buy Jarrows or Swansons B12 on Amazon, 60 x 5000mg tablets, and also there is a spray form of B12 there delivering about 500mcg per spray? I had many neuro. symptoms but was completely ignored eventually raised own B12 from 167 (180-800) to sky high, outside NHS range in four months, took 6 x 5000mcg tabs daily, vital to take tabs sublingually as b12 enters bloodstream directly via membrane under tongue so avoiding any gut/absorption problems Such dosage is reckoned in Holland to be the equivalent of 2 injections weekly, it is possible to raise your levels. If your experience is like mine then you will feel a difference in four weeks. Although self-supplementing will alter any blood test results you might reckon it is worth it to feel better than half dead, at least you will be able to argue your case more cogently when you feel better, you are really suffering, I know, I have been there, dug self out of pit when I felt half dead with 28 symptoms.

GP should be checking your B12 before the injection you do get: folate must be checked also.

Folate should be at least 3/4 way up range, or higher, involved in methylation of the injected B12, hydroxocobalamin, to form usable by cells: low folate equals loss of injected form B12 (hydroxocoblalmin) as if folate low cannot be methylated. The methylcobalamin in Jarrows/Swansons tablets/sprays is ready methylated so goes straight to work.

Have you got someone who can go with you to GP and demand better treatment - what you see as a companion GP sees as a witness, often GPs behave better/listen when you have a companion.

Rereading your post I see you have tried injecting subcut but if not enough folate to methylise the injected hydroxocobalamin perhaps that was why it did not work, hydroxocobalamin could not be methylated so lost to body by excretion. Or, also, enough iron in your system. Ferritin (stored iron) should be checked as well as folate, again, should be high in the range.

I hope this gives you the prospect of relief. Please PM me if any questions, my time on computer is limited at moment so I miss posts.

[Hidden]

Hi helen1978, please don't despair, you're not alone. Can I ask has your doctor done full thyroid function tests on you? The symptoms you describe could be caused by an overactive thyroid, amongst other things. If they have only done a TSH test on you this is not enough, you would need full thyroid function tests (TSH, T4, T3, thyroid antibodies) to get a clear picture. Make sure you get a copy of all your results, don't accept any protestations of "you're normal" as in my experience lab ranges are nothing more than fairytales.

I completely agree with nostoneunturned, you have the right to better treatment for your B12 deficiency. The Pernicious Anaemia Society are amazing, so much knowledge and advice, if you don't want to join you can read lots of information and browse the forum for free. You will see your story repeated over and over again.

Hampster x

[helen1978]

Yes i have had a full thyroid test done though i had to pay for the home test kit but not sure of the results if anyone here knows

Total thyroxine(t4). 130nol/l 59-154

Tsh. 237miu/l. 0.27-4.2

Free thyroxine. 19.9pmol/l. 12.0-22.0

Free t3. 5.0pmol/l. 3.1-6.8

Thyroglobulin antibody. 17.2iu/ml. 0-115 negative

Thyroid peroxidase antibodies. 12.1iu/ml. 0-34

I am just so frightened with how i am feeling and eerything i am suffering from

[Hidden in reply to helen1978]

Is that 237, or 0.237 for your TSH?

[Hidden]

I have just had another thought, you say you have 2 small children so am I right in assuming you have had 2 pregnancies during this last 12 years of receiving 3 monthly injections? And possibly breastfeeding? These life events could have easily depleted your stores of vitamin B12, particularly if you also had gas and air during labour (nitrous oxide inactivates all the B12 in your body). When was the last time you had your serum B12, folate, ferritin and vitamin D tested, and do you have the results? You say you had the thyroid tests done privately, have you ever been tested for Active B12, MMA or homocysteine?

Hampster x

[helen1978]

I was diagnosed 2 years after my first was born i have had a active b12 test done through a private gp but it was only active b12 and not the others that were tested,i had gas and air with my second child but that was 10 years ago now

[Hidden in reply to helen1978]

Hi, I have sent you a private message x

[Hidden]

when I was first diagnosed in my 40s I was put on Cytamen once a month this worked fine I was moved on to hydroxocobalamin 30 or so years later I managed to get this once every two months I became more aware of my periferal neuraphy This last year I have managed to get back on to Cytamen once a month and I feel better I am now 87.Harrybank

[Catsgalour]

Hey Helen,

I read your "Had Enough" posting awhile back! Not really qualified ...or have enough knowledge about this to answer you then....But see some Great people did and I do hope it helped!

I cannot imagine how you are coping with 2 young children and feeling so ill!

I myself felt wretched after my second child but put it down to depression and a bad relationship...? Many years later and a bit wiser I am sorry that the internet and other advice was not as freely available!

I am 63 this month and have spent a lot of my life wondering why I always felt so ill and tired?

Eventually got a doctor to give me Thyroxine Tabs...(which you could need ?) but it took a new Doctor to test me again for B12 ...and of course it came back far to low! I have had the B12 jabs every 10 weeks for years now...(my doctor is not to bad compared to some...!)

I Do feel better these days but they do not test you often enough ...Do try the Jarrows Methyl Tabs !! I stopped them for awhile and felt wrong again ...BUT then again they were giving me much thyroxine ...?!! I do feel better since going back on them though...

Hope this helps a bit more....Take Care Christy xx

[MCMC]

Hi Helen,

I've sent you a private message.

MCMC x