Hi there. I'm so glad I found this site. I need some understanding of this disease and I need to know if there is anyone out there living a normal life after treatment. I'm also trying to figure out what symptoms are coming from PA and what is coming from thyroid as it seems that they seem to cross over. Can anyone tell me if they have had these symptoms: Feel bad in the mornings, but better in the afternoon-evening. I mean a big difference. I feel like I'm sleep walking half of the day and extremely lethargic and cant barely eat in the morning. Does anyone have visual problems, like eye bouncing or wavering especially in the morning? Sensitivity to light? Tachycardia- fast pulse rate, hair loss, cracks or cuts in the sides of the mouth, thrush on the tongue, sweating- mostly at night? Shaking, I think they call this tremors? I just starting shots. I've had 2 hydroxocobalamine shots and am taking sublingual Methyl b12 1000mcg per day. Please help, as I have been very sick for the past 5 months and am nervous that I won't get my life back....Thank you
New diagnosis of PA : Hi there. I'm so... - Pernicious Anaemi...
Pernicious Anaemia Society
Yes to all of those things and much more. I only felt like that in the morning because I couldn't be awake at all in the afternoon if I'd been awake in the morning, etc.
This is going to be short as, after 19 months of daily self injecting I am living again (as opposed to dying) and I must go to work now (it's 5.30 am) and I'm just contemplating taking on looking after a horse, as well as myself!!
For more information on this, you could look up my profile by double clicking on my name and see my post "My Experiences"!
If you get enough B12 and supporting supplements you can get better!
Yes to the morning lethargy, light sensitivity (and sound and movement), occasional tachycardia, cracking at the corner of the mouth, night sweats and a whole lot of others including neurological symptoms and the nerve damage (pins and needles). Rest assured that things will get better as you keep on with your treatment. It won't necessarily be quick but you will get there and you'll be able to have your life back! Good luck.
Hi jpar please be assured that there is life after P.A. as I've had it since 1972 and I'm still "clivealive" at 75.
I was at first threatened with having to eat raw liver three times a day but then was given the option of cyanocobamalin B12 injections every four weeks and the "seem" to be working.
Seriously though, I'm not a medically trained person but there are others on here who will be able to give you good advice. All I will say is please ensure you have your Folate levels checked as this works together with the B12 and iron to make red blood cells.
As others will say it may seem that some symptoms appear to get worse before they get better. This is not uncommon and it is probably a sign that the B12 is at work repairing the damage done to your nervous system.
I wish you well
Hi l have had PA since the 90's and up until recently was working a 50 hr week looking after children. I had most of your symptoms to start with but once on injections started to get better each month. After several years my symptons started to come back and doc increased injections to 8 wks. No prolems then till new doc increased inj to 12 wks and symptons started again. Doctor refusing to listen so l am hoping to start self inj every month. The main thing is to be positive and tell yourself you will feel better. There is a great site on facebook with lots of supportive people try it out. There is life after PA diagnosis dont worry. Hope you soon feel better.
Glad you've found us, you'll get answers and empathy from people who in the middle of it.Good luck x
Yes to all your symptoms. The hand tremors were awful, the dizziness, loss of balance and overwhelming tiredness. I began to wake up at about 2pm and was back in bed by 6. My eyesight --- I can only describe it as dull, not nearly as sharp as it should have been with glasses. The shortness of breath was scary.
My GP was useless so with support and advice from here I started self injecting.
Would! What a change.
The tinnitus went, didn't even know that was part of it.
Within 2 weeks of injecting on alternate days I stayed out of bed ALL DAY. I celebrated that day, I can tell you.
I didn't notice the change in my sight until I had to drive back from my daughter's house in the dark last December. I was really worried but what a difference. I spent a 2 hour drive marvelling at how sharp everything was.
Every symptom and sign of B12 def has gone. I start to feel achy and tired after about 16 days now, another quick injection and I'm good to go. I've gradually stretched the injections out and at £1 a time it's a cheap way to get well again.
You can get better and you will. Learn everything you can on this site.
If your GP is injecting you make sure s/he knows the correct loading doses. Make sure your other vitamin levels , esp folate , Vit D and iron have been checked and supplement where necessary.
The Pernicious Anaemia Society will be a great ally and support to you, well worth the £20 membership.
Never had the shakes or problems with walking which I now know are symptoms, but certainly had cracked, split and sore mouth...for about 9 years! Did not know what it was and seemed a bit trivial to see the GP about. Hair loss: same thing.
Tiredness, hip pain and bowel problems finally got me to GPs, and found to have low B12. Wasn't told very much except that I needed injections, and so it was the nurse who told me this would be for life. Bit of a shock and that's when I started doing my homework. This site has provided me with massive support. These are the only people that you can ask the question "Is this me, or a B12 thing?" and get an honest answer.
My biggest problems, which are currently stopping me returning to teaching, are these:
Not being able to "phase out" other conversations or sounds; all noise being equal I cannot focus on the person I am speaking with.
Confusion: not understanding the meaning of what is being said to me unless very literal.
Although most of my symptoms have either improved or are less frequent or both, none have actually gone yet, but I think that's because I now have been diagnosed with functional B12 deficiency, which means blood is awash with B12 now, but not much gets through to tissues and so difficult to monitor or control. I usually use hair and nails as signals: quality can change a few times within a day.
Thank you soooo much... all of you. I am in tears right now knowing that I'm not crazy and not alone. I have actually been sick for 2 years but the past 4-5 months I have been bedridden for a lot of it. It thought I was dying. Or, I thought it was weird thyroid symptoms, but once we started correcting the thyroid I was still very ill until my gastro doctor did an endoscopy and found atrophic gastritis and then came up positive for intrinsic factor antibody. I've had digestive problems most of my life but never came up with anything. The scariest thing about being sick has been the neurological problems.... like I can't think straight, can't remember things, don't even have the energy to speak sometimes. Is this part of PA? Will I get my brain function back? I used to be so sharp and quick and it seems to be gone right now. However, just in the past two weeks since starting the meds, I have been a little more alert. Has anyone had aura with migraines when things were at the worst? I don't know if I can tie this in also.
Your brain function will come back. I'm IFAB positive as well, had the fogs that you're describing in addition to balance problems, losing my words etc and was struggling with my job - highly technical, high pressure and at times physical - until I started treatment but it all eventually came good. I do have to be on the ball when it comes to getting the injections, though, otherwise I start to lose the plot, so just remember that things are now on the up. Can't speak for the migraines but maybe someone else will.
Yes to all of this and more. Except my eye problems were worse in the evenings.
I have problems with both b12 and thyroid. It is difficult to tell what symptoms come from where, but just get the b12 at the pace you need, and give yourself time to heal and things will be clearer. I hope you heal fast, but for some of us it takes a year to feel better
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