Hi, I am very poorly at the moment - ... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,064 posts

Hi, I am very poorly at the moment - very tired and fatigued (which is not helped by sleep), depressed, mood swings, irratable, aching

Booblet profile image
8 Replies

joints, and trying to loose weight (but failing)......However, I am prescribed B12 every three months, My intrinsic factor is positive....Once I have had the B12 injection i feel much better but only for a week or so.......I am due my injection this week....my immediate symtons are pretty bad ---- very shaky and out of breath and my face goes red when I attempt any small task...cant walk without being out of breath and shaky... ALSO! I am low in iron (take iron tabs once a day ( but they make me constipated), ALSO! I was told I have an underactive thyroid (prescribed Lexithyroxine 50mg x daily) , My Free T3 level was fine (apparently), My TSH is now 2.8 (from 5.2)........I also take vit D tablets once per month due to deficiency...

I do not feel any better....Can anybody please help? I am (yet again) going to see my GP o Friday???? Regards, Gill

Written by
Booblet profile image
Booblet
To view profiles and participate in discussions please or .
Read more about...
8 Replies
lucylocks profile image
lucylocks

Hi

Sorry I cannot comment on your B12 but I know this often goes hand in hand with hypothyroid. I am also hypo and it looks though you are only a small dose of levothyroxine, 50 mcg is a starting dose. As your TSH is 2.8 although it is range for someone on thyroid meds. it really needs to be lower to feel well. If you go to the thyroid forum you can get plenty of advice on there regarding your thyroid and medication.

B12 and thyroid symptoms are very similar

Also Low Vit D and iron deficiency causes fatigue and lots of your other symptoms

For your thyroid meds. to work properly you need iron, ferritin, folate, B12 and Vit D to be in high range.

I would post a question on the thyroid forum and you may get more answers there with lots of advice

regarding all of this.

Hope this helps

Best wishes browny

Booblet profile image
Booblet in reply tolucylocks

Thank-you so much for your reply... your a 'star'! I never realized that I need to have iron, ferritin, folate, B12 and Vit D all a high range...THEY have always been in the lower range.....I will 'try' to act on this - via GP...or, in a more realsitic notion....with the help of this forum and my purse...! Gill

johnbarriesmith profile image
johnbarriesmith

You obviously seem to have auto immune issues , have you looked back in your family for evidence because it can be hereditory . Also there are no absolutes in human physiology dosage depends on the individual , with auto immune come problems with absorbsion so needing to be top of the range in blood results . In addition like you I connot last a month never mind 3 months per injection , Drs wont help , it is a big decision but you may have to go to self sourcing and injecting , you can get the info on P/A web site .

Thyroid is quite a differentGCthe establishment has commercial connotations they are quite happy to keep you ill , ,Levothyroxine does`nt work for everyone because it is inactive , if your body cannot convert it you wont get better , Natural Thyroid has all the elements needed that synthetic lacks , however the GMC , Royal Colleges , and Prof Weetman have vested interest in keeping you ill .

Like the rest of us you will have to go to Thyroid UK or Thyroid Patients Advocacy to get help with supplies .

Erainy profile image
Erainy in reply tojohnbarriesmith

"establishment has commercial connotations they are quite happy to keep you ill" It's so true John.

There is already a cancer cure but they don't give this to you ordinary folks and only toxic chemo are given to general public. If we are healthy, they don't make money. Needless to say, I stopped donating to Cancer Research charities. Their sole purpose is to keep on researching.

Erainy profile image
Erainy

"very tired and fatigued (which is not helped by sleep), depressed, mood swings, irratable, aching, very shaky and out of breath and my face goes red when I attempt any small task...cant walk without being out of breath and shaky.."

I would say these are all B12 deficiency symptoms unless there are other things that is causing these. A quarterly injection is probably not enough for you if you feel that it only lasts for a week. Weekly injection is probably better for you but I doubt your GP will prescribe that much. So other alternative would be a self-injection. There are many places you can buy B12 Ampoules (from mycare.de) or vial from b12d.org (UK charity). Otherwise, try 5000mg subligual tablets.

Booblet profile image
Booblet in reply toErainy

Thank-you so much for replying - it has really helped... I have contacted "mycare.de", however, Can you tell me what I need to order? I have emailed this site but they only translateso much into English!! I want to purchase the B12 Ampoules - I think? I have never injected myself...so, I am quite worried about that.... I have since had my B12 injection (1 x 3month!) - and feel so much better, for the moment....I have also contacted the b12d.org but cannot find where I can get the B12 from! Thank you again, you have been so kind.. Gill

Erainy profile image
Erainy in reply toBooblet

You need to email b12d.org, you cannot order from the site as they don't sell vials. They will send you a 30ml Methylecobalamin free. They are charity so I'd make a donation though. If you are going to order from mycare, I'd just order 5 or 10 ampoules first because you have to send a bank transfer for your first order (don't ask me why!) and bank charges would be cheaper, then I'd order like 100 ampoules which would cost about £65 for a year supply and you can pay by credit card from second time onwards. Here is the link to mycare, I bought this Hydroxocobalamin and it doesn't contain any preservative other than salt and vinegar. mycare.de/online-kaufen/b12... This one is cheaper but I haven't tried it myself, it's Cyanocobalamin. mycare.de/online-kaufen/vit...

Translation is a bit of a pain but with online translation we have all managed to order some how.

By the way, if you are new to self-injecting you might find this helpful.

healthunlocked.com/pasoc/po...

Personally, I hate injection and can't stand the sight of a needle so I use an autoinjector above. 1ml diabetic syringe with fixed needle (I use BD Microfine U-100) from medisave.co.uk would fit in that autoinjector. Don't forget to buy alcohol wipe too. If you go to Boots or Superdrug, pharmacy also give you a needle pack which contains 1ml diabetic syringes, alcohol wipes and a sharp box to dispose of syringes for free. If you don't know your nearest needle exchange, you may want to ask talktofrank.com

gillandandy, you can join the PAS or our Facebook page for help and advice, lots of us having to self treat rather than put up with the 3 monthly nonsense. Also important are folate and iron, a B-complex etc. Here are the links:

pernicious-anaemia-society....

facebook.com/groups/1749289...

This is a link about where to source supplements etc.

pernicious-anaemia-society....

Not what you're looking for?

You may also like...

Self Injecting of B12

Hi, This is probably a story that you have ALL heard before: Went to my GP stating I do not feel...
Booblet profile image

Advice before apt with doctor tomorrow please?!

I was 2 weeks overdue for my recent B12 injection and I saw a new nurse. She spoke to a doctor and...
SC88 profile image

Can Iron Supplement cause rapid heart beat and anxiety?

I'm probably deficient in b12 as I have many of the relevant symptoms (including neurological) so I...
Shajarin profile image

Wondering how weird healing can feel?

I don't have PA but I am getting B1+B6+B12 injections for build up of lactic acids to due to...
Justiina profile image

Weak and Skin Burning

I have PA. I had covid three times last year. I was settled on B12 H every couple of months for...
Blais profile image

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.