What to expect... advice needed, than... - Pernicious Anaemi...

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What to expect... advice needed, thanks!

Shannonf247
Shannonf247

Hi guys, I start the first of my loading doses tomorrow. What can I expect in terms of recovery ? I’m constantly tired and drained, no energy, breathless and just over all run down. Its just not me what so ever. One GP tried to put me on anti depressants then another was like no, let’s not do that. I don’t think I’m depressed I do have major anxiety right now and do not feel like myself but b12 could be the reason. My levels were 150. Also being tested for antibodies tomorrow.

Any advice or stories welcome and appreciated!! X

20 Replies

after my loading doses i felt worse a couple of days after but it depends on the person! my levels were 118 so quite low😫 My doctor said that some people feel amazing after! Hopefully you start feeling better xx

Shannonf247
Shannonf247 in reply to Tessaroo

Thanks for your reply!! It really does just depend then, I’m hoping because I’m young (23) my body handles it well. That is low! I eat loads of red meat etc so my doctor said he wouldn’t be surprised if it was PA with my levels at 150! Thanks for your kind words xxx

I feel horrible the first few days aftwr I inject and get tired and bitchy and emotional too. I don't understand why B 12 does that to some people but I have mental health issues. After a few days the sun comes out and the diffrence is like night and day. So if I seem snappish or erratic, chances are I just injected. A small price to pay to have energy and be able to think clearly and get out of bed and function on a regular basis.

Note: small edit by admin

clivealive
clivealiveForum Support

I've had P.A. for more than 46 years and I'm still "clivealive" at 77 so please don't feel too anxious.

Ask your doctor tomorrow to check your Folate level as this helps B12 make red blood cells.

I wish you well for the future

My folate levels were normal 5.4 so doesn this ? My iron levels were slightly high 124. So does this mean that I couldn’t have PA with normal folate levels? Thanks for you reply, appreciated!

clivealive
clivealiveForum Support in reply to Shannonf247

No - P.A. is not dependant on folate or iron levels but whether or not you have Intrinsic Factor Antibodies which it sounds like you will be tested for tomorrow.

Thank you so much for your reply. This is all very new to me and I’m learning as much as I can. Wish you well x

clivealive
clivealiveForum Support in reply to Shannonf247

Hi Shannonf247 having the first of the loading doses tomorrow won't produce an "overnight" cure or improvement in all of your symptoms in fact it may even appear that some feel worse rather than better.

Please do not worry overmuch as this is quite a common reaction when treatment begins and the B12 starts repairing the damage done to the nerve endings caused by the deficiency.

Hopefully one of your doctors will try to find out the cause of your deficiency which can range from poor diet (do you eat meat?) medications (any antidepressants may cause it plus antibiotics, antacids, some contraceptives or those drugs dealing with diabetes etc., the list goes on), infections such as H-pylori, family history of P.A. (do you have parents or blood grandparents with it?) gastric surgery, an absorption of nutrients problem with your digestive system, or if you have any other autoimmune illness etc etc - again the list can go on.

But whichever, any or non of the above are the cause the treatment via the B12 injections is very effective and I should know, for by the time I eventually in 1972 got my diagnosis (13 years after gastric surgery) I was like a walking Zombie and I had previously had virtually every test available for other things without result.

My then doctor asked whether I wanted the good news or the bad news. I said "give me the bad news first". She said "you're going to die within the next two years".

There was me, 30 years of age with a sick wife with heart problems and two daughters under six so I asked "what's the good news?"

"You're not going to die within two years if you eat raw liver three times a day or have B12 injections for the rest of your life"

Now I love BAKED liver with bacon onions and gravy but couldn't face it raw so I opted to have the injections.

Your Folate is at the lower end of the scale so I would mention it to your doctor as he may prescribe you with some folic acid.

I hope all goes well with you tomorrow - I shall be thinking of you.

Please come back and let us know how you get on.

Hi again,

Thanks for your messages, they have helped me a lot. I have heard that you can often feel worse before you get better, which is something I’m willing to power through with if it makes me better in the long run.

I do eat meat yeah, only thing I don’t eat is fish, just not a fan. I eat red meat, eggs dairy etc. So the doctor thinks with levels at 150 it would most likely be PA. Just need to wait and find out I suppose.

No one in the family has this or any other conditions that relate. Or any autoimmune diseases.

Wow, must of been scary hearing that! So glad to hear you’re on the mend now and got your life back. It’s just very fustrating.

Before I was feeling ill, I’d be working 50 hours a week, always out with friends then all of a sudden I started becoming absolutely floored. Then the anxiety kicked in😴 something I’ve never suffered from before. It can really change you in ways you just wouldn’t expect. It’s good that we all have each other here.

I will speak to the doctor tomorrow about levels of folic acid because I was thinking it was on the lower side, thanks again! X

clivealive
clivealiveForum Support in reply to Shannonf247

Well I'm still very much "clivealive" at the age of 77. :)

However it's my bedtime so I'll bid you a good night and please do try not to worry - your journey back to recovery starts tomorrow.

May I say clivealive, you are amazing , and so helpful to people.

I just started B12 shots. Within 36 hours, I felt like a new person. I cried because I forgot what it felt like to feel good.

Nikilb0902
Nikilb0902 in reply to Tldl

How often and how many ML's in the injection due u receive?

Tldl
Tldl in reply to Nikilb0902

I am not sure. I will ask tomorrow. I have injections once a week.

Shannonf247
Shannonf247 in reply to Tldl

That’s amazing!! I hope it’s the same for me, fingers crossed! X

Hi there after 7 months I feel even worse had to cut my hours at work my level was 48 now I'm being told it's not my b12 just makesure you myther doctors if you don't feel better after couple months I can honestly say I can't do anything only the basic things in life hope you feel well soon also I felt sickaf after loading doses it is common x

Shannonf247
Shannonf247 in reply to Dawn45

That’s not good, I’m sorry you’re still feeling well 7 months on but I’ve heard it can take up to 18 months to feel the full benefit. Just had my first injection there and I can say I feel a tad dizzy but I also got bloods taken x

Shannonf247, I started my loading doses 24th April and did not notice any difference until the day after my 3rd shot (1st May) but the difference was astounding. It was a miserable cloudy day outside but, to me, it was the brightest day I had seen in years. By the 5th injection (4th May) I was feeling great. I had one more shot and then stopped. The intention was for me to have a top up every 1-3 months, depending on blood tests results, however, I felt great for a week after my last shot, then everything went down hill from there. By the end of May I was worse than ever.

Luckily, my Doctor (and the nurses) were great and I was prescribed 1 injection every 2nd day until there was no improvement (not there yet!)

I imagine that you, like myself, have done a lot of reading since you were diagnosed and there is one thing that is clear - everyone's experience is different. Hopefully you experience the euphoria that I felt after 3 shots (or quicker like Tldl) and not the downward spiral that followed.

Regardless, anything is better than before.

Cherylclaire
CherylclaireForum Support

Some people take longer, so just don't give up. For those who do not respond quickly, it is sometimes a bit of a struggle to get better, and of course some of us get a bit worse before we get better.

It also takes a while to realise quite how much can be put down to symptoms: things start to clear up and improve that you had almost forgotten weren't "normal" you ! For instance, I'd had sore split skin at the corners of my mouth for over ten years- and just thought it was probably a combination of very dusty working conditions and not eating enough fruit....one of those things you always say "next time I go to the GP with something more important, perhaps I'll mention it" but never get round to it. It did just go after a while, and now returns slightly every so often and is one of my indicators that I'm overdoing it.

Take very good care and keep an eye out for symptoms and improvements. Might help to keep a record.

After my first shot I had so much more energy. I still had a lot of other symptoms, but my energy immediately went up and my dizziness went away.

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