my b12 diagnosis x

[Dawny257]

Hi everyone I was diagnosed with this this week , and I'm relieved my tiredness and everything else I have suffered back pain muscle pain feeling down is now something I hope these injections will repair , as a mum of 5 I have felt so useless and wished I had the energy to do more with them but all I wanted is to sleep . Housework daily routine is so hard and I wake up aching and can not be bothered with the day ahead ... It's so cruel and I'm hoping I'm a different persons after these injections , have to have 1 every week for 4 weeks then after that every 3 months . So glad I'm not the only one like this I actually thought I had cancer xx so nice to talk to people who are like me xxx

[BethattheBeach]

Welcome, Dawny. You will find lots of information here if you read through the various posts. It helps to adjust your diet (Gluten Free?) and many take extra supplements to aid absorption. Good luck!

[matty220]

Hi dawny257. So glad you've been diagnosed and I'm sure you'll feel better soon. Do you know your actual result, is, numbers? X

[Dawny257 in reply to matty220]

No but I'm going to ask when I go for my first injection . Doctor just said my b12 was very low x

[Adriennne]

Must be tough when you have to be always on hand with a child . I my case although 68 years old still enjoy a full time job just started my 3 month injections did need it as feeling a little tired hair very limp but in a few days feel strong again no matter what age or outlook in life no one welcomes the feeling of tiredness chin up

[clivealive Forum Support]

Hi Dawny257

I well remember the feeling of euphoria and "walking on air" that I had when my doctor finally told me that she had "got the results" and knew what was wrong with me as I was more a zombie than a human being.

She asked "Do you want the good news or the bad news?"

I said "Give me the bad news!"

She replied "You're going to die - and within two years"

Here was me registered disabled, having been retrained and trying to cope with a new job in accountancy, with two children under 5, a sick 26 year old wife and a mortgage.....

"So - what's the good news then?" I asked.

My doctor said "You're not going to die if a) you eat raw liver three times a day or b) have these injections every four weeks for the rest of your life".

Much as I love cooked liver with onions and gravy I was tempted to ask if I was to take the raw stuff before, with, or after meals, but decided to opt for the Cytamen b12 injections instead.

There is life after P.A Dawny257 and sometimes it can be a "rocky road" to get the level and frequency of injections right, but hopefully your doctor will be fully up to speed with your treatment.

I had my first jab on 10th May 1972 now nearly 44 years ago and am still "clivealive" coming up to 75.

I wish you well for the future

[Sleepybunny]

Hi,

Pleased to hear that you got a diagnosis. Have you been diagnosed with PA (Pernicious Anaemia)? Are you in the UK?

Some hopefully useful links for you.

pernicious-anaemia-society....

01656 769 717

b12deficiency.info/

b12d.org/

martynhooper.com/

Books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ, Stuart

UK Documents/Articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

"have to have 1 every week for 4 weeks then after that every 3 months . "

If you are in the UK, then the treatment you mention seems slightly different to the standard NHS treatment. Info on treatment can be found in the BNF (British national Formulary) Chapter 9 section 1.2 and also in the "BCSH Cobalamin and Folate guidelines"

This link contains similar info to the BNF in the Management section.

patient.info/doctor/pernicious-anaemia-and-b12-deficiency

The recommended treatment for UK patients who have B12 deficiency with neurological symptoms is more intensive with extended loading doses and maintenance doses at shorter intervals. Do you have any neuro symptoms? My experience is that some UK medics are unaware that the treatment for B12 deficiency where there are neurological symptoms is different to treatment of B12 deficiency without neurological symptoms.

See Symptoms lists below.

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See Symptoms checklist.

Sometimes B12 deficiency occurs alongside other conditions eg thyroid problems, coeliac disease plus other conditions. Have you had thryoid tests? Coeliac tests?

thyroiduk.org.uk/tuk/

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

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

Helpline 0333 332 2033

[Dawny257 in reply to Sleepybunny]

Yes I also have an under active thyroid X

[Jonan71]

Hi Dawny I had symptoms such as tired but don't sleep either, leg and joint pains headaches and just washed out. Few others but won't lift them. I went for a blood test and came back low B12 mine was 155 limit is 180. After advice on here I got a print out of my results but I can't read them but noticed my calcium is low too. Also I don't think vitamin D was tested which can also affect bones. I was started on a loading dose which sleep bunny mentions. I have six injections in two weeks and waiting for my first four week one. I can't say I have noticed a huge difference but after two weeks without I am pale and back to being shattered and still have a week to go. I have not been told why I am low and would think I need a test to see if it's put my level up? Very confusing.

[jazzanne]

what was your level dawn, did they check your folate x

[Dawny257]

Hi I'll find out my levels next time I go and ask if my folate was checked too xxx