Get to know me (pernicious anemia)

[Kay3710]

Hey all! My name is Kay I'm 27, married and a mommy of 2. This is my first time posting. I was diagnosed with pernicious anemia August 2017. I am currently only taking 1 b12 injection a month. My first time on the injections was in June 2017 which was weekly for one month. Then I started the monthly shots around August where I was then diagnosed with the PA. Back in late January my doctor put me on the weekly shots for one month again because my blood work results showed my b12 was at 280. Ive been back on the monthly shot for 2months now, and I'm struggling with extreme exhaustion, numbness in legs, mouth uclers, memory loss, dizziness, back pain etc.. I will be seeing my doctor this Wednesday. I am hoping she will give me weekly or bi-weekly shots because that seemed to help. But I'm not sure what is going to happen. Has anyone here struggled with this or is currently? As a mommy and wife it's stressful to feel so exhausted every single day. This has taken a toll on my life. It's hard talking to others whom don't understand. That is why I've decided to come here and hope to get advice, and maybe hear others stories.

[clivealive Forum Support]

Hi Kay3710 are you in the UK?

Monthly injections sounds as though you are on cyanocobamalin B12.

Do you have any idea what your Folate level is?

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It's a bit late now and past my bedtime so I'll bid you goodnight and hope there is someone else who can advise you.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[Gambit62 Administrator]

B12 is a very individual things.

Treatment based on serum B12 levels just doesn't work and you need to go by symptoms. Some people remove B12 from their system much quicker than others - 1 month is an average with cyanocobalamin but there will be a lot of people who get rid of it much quicker and also a lot that take longer. You are certainly far from alone in needing B12 shots more frequently.

Additionally, on average, people who have had B12 shots need much higher levels even than the top of the normal range so you may actually be suffering from a double whammy.

Personally I find that my symptoms return within 24 hours (which is down to needing much higher levels after shots).

Wish you every success with your doctor.

[Siobhan1965]

Welcome Kay, I’m assuming your US based?

In the UK GPS tend to prescribe 3monthly injections once the loading dose is complete. For me and lots of people on this site, that’s not enough.

I got my GP to agree to 8 weekly jabs but even then struggled. It’s almost like the more you get the more you need. I’m assuming that’s the body repairing itself and relying on the dose.

Your symptoms are entirely like mine. The joint pain has been misdiagnosed as Rhumatoid Arthritis and recently my GP decided I probably have ME. I don’t.

After a disasters family holiday last October where I was utterly exhausted and considering giving up work, I took the advice of members here and self injected. My life has changed immensely.

I inject every second day, sometimes daily. Also take iron and folic acid and a good multi vitamin.

I tried to reduce the iron and folic acid at Christmas as I was feeling so much better, I crashed and burned after a few weeks so lesson learnt.

Good luck x

[Meisor]

Hi kay3710,

I definitely know your frustration. I was diagnosed 8 years ago and quite honestly have been struggling intermittently all these years. I get Hydroxocobalamin 1mg in 1ml solution. Initially it was 12 weekly then after much pleading with my doctor it was increased to every 8 weeks, still not sufficient. I’m good for about 2 weeks then I struggle till my next injection especially those last 2/3 weeks. I too have children 4 of of them. Thankfully they are up enough that they can fend for themselves but when they were younger as yours are it was torture. I found myself in an emotional state many many times because I felt so useless. Iv only just come across this forum myself just last week and it has been such a great support and brilliant advice. I’m going to self administer as my doctors refuse to increase my injection and I just cannot live like this any longer. I have received brilliant advice from others on here about ordering what I need and where to get it. Their is a great documentary on utube called living with the fog you might find really useful. I hope you get the help you need.

[Sleepybunny]

Hi,

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of above book,

"Could It Be B12? Paediatric Edition: What Every Parent Needs to Know"

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

USA B12 website

b12awareness.org/

I am not medically trained. I hope you get the treatment you need.

Sometimes having one auto-immune disease can increase the chances of developing another one. Has your doctor excluded the possibility of other auto-immune diseases?

pernicious-anaemia-society....

Thyroid Disease

Have you ever had any thyroid tests? If yes, may be worth looking at Thyroid UK forum on Health Unlocked.

Thyroid UK website

thyroiduk.org/

Coeliac disease

Have you ever had tests for Coeliac (spelt Celiac in US) disease?

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

[Kay3710 in reply to Sleepybunny]

Yes! I had blood work done for thyroid and also had a sonogram done as well both negative. Thank you for the information on the books will try to find them this week. My doctor's appointment is tomorrow I will keep you all posted on what happens then. Thanks!

[Sleepybunny]

Hi,

"I had blood work done for thyroid"

Do you know which thyroid blood tests you had? In UK, doctors sometimes only do TSH test which won't give a full picture of thyroid function.

Thyroid Blood Tests

Reference ranges in below links may be UK specific.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...