Shouldn't he be feeling better instea... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Shouldn't he be feeling better instead of worst after 5 weeks of self injecting 3 times per week?

timmysmom profile image
15 Replies

We bought ampules from Germany after gp refused to give B12 injections more often than every 12 weeks despite my hubby having lots of symptoms and having to give up work due to the fatigue and bad memory. A few on here have said he will feel better eventually. He was diagnosed with B12 deficiency over 10 years ago and apart from initial loading doses, has only been having 12 weekly injections since then until starting to self inject 5 weeks ago.

Has anyone else had a similar experience of it taking many weeks to see an improvement??

I'm wondering if something else could be making him ill such as underactive thyroid. It's horrible to see him so bad with fatigue. Thanks in advance for any responses.

Written by
timmysmom profile image
timmysmom
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Nackapan profile image
Nackapan

I would get all bloods repeated. Thyroid included. And all vits and minerals they will do.

Keep going with the injections to give them a proper chance at a higher frequency

Keep a diary.

Hope you find some solutions.

timmysmom profile image
timmysmom in reply toNackapan

Thanks Nackapan.x

TariTraveller profile image
TariTraveller

Hello, I was diagnosed 20 years ago and unfortunately it took me at least 2 years to feel okay again...I don’t want you to lose hope as each person’s situation is different. I started out with weekly doses, then monthly and now for the past 18/19

years every three months, but I had to build my way up to this point. I was in the fog for a long while, however it doesn’t occur as often any more, if I eat correctly, exercise, get plenty of rest, and take my doses correctly I can go months or maybe a year without getting run down. Hope this helps and best wishes for your loved one.

timmysmom profile image
timmysmom in reply toTariTraveller

Thank you TariTraveler.x

Sleepybunny profile image
Sleepybunny

Hi,

It took me weeks even months of loading doses to see improvements but then I'd been ill for over 15 years ; I also suspect I have some permanent damage. I had to resort to self treatment as i had been refused treatment by NHS.

Some people experience a drop in potassium levels when treatment starts. Has GP checked his potassium levels?

Personally I would not take potassium supplements unless prescribed by GP as excess potassium can cause issues in body so I eat bananas and other potassium rich foods regularly.

I am not medically trained.

timmysmom profile image
timmysmom in reply toSleepybunny

Thanks for that Sleepybunny. He hasn't had his potassium checked but he is eating a banana every day. Hopefully he'll see some improvement soon.

Showgem profile image
Showgem

It took many months of b12 injections for me to feel any better. 1 year in and tiredness is still a problem. I was diagnosed with fibromyalgia a few years ago and was hoping that I may have been misdiagnosed but maybe I do have both.

As has been said by others, it would be wise for your husband to get checked for other problems.

timmysmom profile image
timmysmom in reply toShowgem

Thanks Showgem. It helps to know he's not the only one who is taking a long time to see an improvement. It's difficult to know which condition to blame when you have more than one isn't it. I hope your tiredness improves for you. My hubbys been referred to a gastroenterologist and rheumatologist months ago but not had an appointment date yet. He's requesting all his blood test results from GP so he can post them on here and underactive thyroid forum too to see if that's a problem as well.

timmysmom profile image
timmysmom

Thanks Nfwales for your advice and experience. Hubby is taking folate but only 1mg per day. It's L Methylfolate 1000 mcg from Piping Rock. com. His symptoms are very much like yours but also he's having to sleep ALOT at the moment. He's eating a banana a day and I did buy some supermarket multi vitamins but not sure they are much good. I will look into taking more folate for him.

Thanks again.

Sleepybunny profile image
Sleepybunny

Hi,

I also wondered what his ferritin and other iron test levels were like and has he had his Vitamin D levels checked?

Iron Studies

labtestsonline.org.uk/tests...

Vitamin D deficiency

patient.info/bones-joints-m...

I wrote a very detailed reply in another forum thread recently with links to b12 books, b12 websites, UK B12 documents/articles and other B12 info. Hopefully there will be some useful info in it for you and your husband.

healthunlocked.com/pasoc/po...

timmysmom profile image
timmysmom in reply toSleepybunny

Thank you Sleepybunny, I will look at those tomorrow. x

timmysmom profile image
timmysmom in reply toSleepybunny

Hes in the process of getting all his blood test results from GP so we can see which tests he's had and what results are.

Thanks again for your help.

Lurcher-lady profile image
Lurcher-lady

Fingers crossed timmysmom. It’s good to have forums like this to compare notes. I have been back to GP today (4th different one in 12 months, with recurrent leg pain. Told her I still have many symptoms although less than 12 months ago. Her reply.......’if there are many symptoms it’s unlikely to be a medically related issue. Time to test your B12 again’! Really! All symptoms put into a google search come up with B12d or thyroid, every time. Rather worrying, but at least we can take control and although it’s taking time, things really are improving, so hopefully they will for your hubby too 😉

timmysmom profile image
timmysmom in reply toLurcher-lady

Thanks Lurcher-Lady, I hope you see improvement with your leg pain soon x

Lurcher-lady profile image
Lurcher-lady in reply totimmysmom

Thanks, I’m sure a lot of that is arthritis creeping in. She suggested holistic medicine, which interpreted means ‘go away!’ I’m sure 🙄

Not what you're looking for?

You may also like...

Amazingly bad GP

Ok so I'm writing my second post after yet another battle with my GP. I was officially diagnosed...

B12 GP Prescribes two adult sisters with same PA Condition an

My GP gives my sister (35) her B12 injection every 6 weeks and I get mine every 12 weeks as my GP...
area16rep profile image

Horrendous Experience at Haematologist Appointment

Hi there, I am writing this having just returned from an awful experience at haematologist appt....
hjcohen profile image

What do hubbys blood test results mean?

Hubby has just got a print out of his blood test results for last 5 years. His B12 has only been...
timmysmom profile image

Some help please GP going to stop Injections after ten years due to high B12 in blood

My husband has been having B12 injections for about ten years now, we went to our GP due to my...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.