So, it has been nearly 3 months since my last injection, due on Friday.
The past month or so, have been hell. I have fainted, sat down in the middle of the pavement, lied down for 4 days straight and have had to go part-time at work, all because my GP thinks I have glandular fever but it is not showing up in tests. The first time I went to see her nearly 2 months ago, I asked her whether this could be my anaemia.
"Of course not, you only had your injection just over a month ago".
Has anyone else felt like they've been led down a path where the answer is clear, but you're being completely and utterly ignored?
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ah1234
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I'm just so fed up. I had a phone appointment with her today and she said to come back in in 2 weeks time for more blood tests if things haven't improved. Of course they're going to improve when I have my injection Friday!
I found that I felt really spaced out but I wouldn't say a side effect as such. I felt better than I did beforehand but only after all of my loading doses.
If you are in the UK, have been diagnosed with P.A and have neurological symptoms you should be having your injections every two months not three - according to the N.I.C.E and B.N.F. Guidelines.
"If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
It's good that your manager understands. I too was fortunate that my firm allowed me to "disappear" every four weeks on a Tuesday morning at 10.30 for me to have my injection at the surgery. This went on for the first 25 years.
I can tick lots of those boxes Clive ....there are no ears to listen (except yourselves)
I have had so much Neuro stuff going on and do lots of research because of it
EVERYONE missed the B12 PA problem and NO ONE believes it just could be (nothing conclusive I know) Neuro related š”
I had to fight the GP to get the Parietal Cell test done .....and the Endo had already advised it !!!
I've researched that Brain lesions and Grand Mal seizures have a correlation with PA and Hashi Hypo albeit small .......but hey what would I know .....I'm only the patient who's got the undiagnosed Neuro problems (multiply brain lesions, a lacunar stroke and 2 unexplained Grand Mal seizures)
š”š”š” Pragmatism prevails !
God forbid we could be allowed to be proactive in our own health!!
I felt like I had a v8 engine and over night it was stolen.
I would sit for hours after getting up felt like only moments but would blink and three hours would go by.
I would go to bed exhausted then not be able to sleep.I would go to work and feel so cold as though I had hypothermia.People would say whats wrong with your skin all mockly.
It was when I was doing cpr at work in emergency department that i nearly passed out.
I felt as though I must have lung cancer as I felt I had worked without any oxygen in my lungs or blood.
Dr's said oh you depressed everything seems ok!They just wanted me on antidepressants.
I fought all the way to find out what was wrong with meI found a Dr that looked outside the box and with us working as a team I got answers he listened.That was the most important part.
It is a fight but do kick all obstacles out your way!
Fight to get better fight for knowledge.We all know how you feel some more than others.We all know frustration and keeping so much inside as unless you feel it its hard to explkain to someone how it feels!
I get up and fight every day my day consists of helthy eating lots of vitamins and minerals and yoga.
Please keep your chin up and find what works for you we are all here to support you.
On the phone yesterday, my dr thought I was depressed as I burst into tears. She didn't understand it was due to frustration.
It's the confusion that I find really scary. Already today I've tried to plug my phone into a charger for my e cig and I've put 2 spoons straight into the washing up from the drawer without using them.
Do you think it's worth making a phone appointment with a seperate dr to the one I've been seeing?
I feel cold too still trying to find out why that is the doctors say nothing to do with PA and I'm so stressed when I lie down at night it's like someone has an ice pack on my forhead I sleep with hat and scarf on most days
I couldn't go three months before next injection.I argued my point and b12 and levels are different around the world.I got mine every four weeks.
I was frustrated as I wanted to be me again.
Like I have said in my other posts,
I now take b12 vegan sublingual by global heath, I use it every day with all my other vitamins.
I do suggest you keep a diary of how you feel and check regular your levels so you find what works and doesn't work for you and what level makes you feel like you again.
Go on utube and put in Dr Edward Group b12 deficiency changed my world and challenge what Im told
"Has anyone else felt like they've been led down a path where the answer is clear, but you're being completely and utterly ignored?"
Yes, I worked out years ago that b12 deficiency was very likely to be part of my problems, mentioned b12 to every specialist I saw and continued to be ignored for years with the (very) occasional exception.
In UK, people with B12 deficiency with neuro symptoms are supposed to have loading injections every other day for as long as symptoms continue to get better (this could mean loading injections for weeks even months). Once symptoms are stable, it's an injection every 2 months.
You mention an injection 3 months ago which suggests if you're in UK , you are on standard UK b12 treatment for b12 deficiency without neuro symptoms.
If you do have neurological symptoms, has GP explained to you why you are not on neurological regime as outlined in BNF link below.
I'd recommend reading whole BSH Cobalamin and Folate guidelines before your appt if you're in UK. I sometimes take a copy of whole document to GP appts.
I found fbirder 's summary of mainly UK b12 documents helpful to read. Useful quotes that may help if faced with unhelpful GP. Link to his summary in third pinned post.
Just self-inject - it's what loads of us are doing. It's not complicated, expensive or frightening, and it should solve all your problems. I certainly didn't have a clue about it initially, but thanks to the support on this wonderful forum, I found all the answers I needed, ordered my stuff and bang, injected myself! I'm currently doing this twice a week and as soon as I feel normal again, I'll cut down to a level that works for me. Take control of your health instead of relying on clueless medics! Good luck!
Er yeah, exactly this. The GP flat out told me that the fainting and splitting headaches could not possibly be because of pernicious anaemia despite resolving when I received B12. They did offer (in a very sarcastic way) to investigate what else it could be (and did some other blood tests), but like you they did not find anything else. Like many people on here I now self-inject.
Back in the late 1960s some nine years after having two thirds of my stomach removed due to a perforated peptic ulcer I was diagnosed with hypertension and depression and put on Valium, Librium and Tofranil plus Neutradonna for my roiling tummy.
If only my surgeon in 1959 had known the connection between P.A. and gastric surgery I wouldn't have got into such a state. All he "advised" was for me to give up my apprenticeship (I was 17 at the time) and get a "sedentary job".
In 1968 my then doctor sent me for a "Schilling" test which came back "inconclusive for P.A." but the test included a massive injection of B12 in addition to the radioactive B12 I had to drink and I think this "boost" enabled me to wean myself off the drugs and struggle on for a further four years to 1972 by which time I was once again a walking "Zombie".
My then, still the same doctor, "played a hunch" and sent me for a second "unheard of" Schilling test which came back positive for P.A. and I was immediately started on cyanocobamalin 1000mcg injections every four weeks for the rest of my life.
I don't blame my doctor for diagnosing me with depression and "drugging me up to the eyeballs" as the connection between gastric surgery and P.A. was not then generally known. Had it been, my surgeon could have ensured that I got B12 treatment straight after the operation.
My "old" family doctor is still alive aged 82, living locally and is now a Dame for her services to medicine and I shall ever be grateful to her for her persistence in "sorting me out".
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