Need to vent....: So, it has been... - Pernicious Anaemi...

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Need to vent....

ah1234 profile image
32 Replies

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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32 Replies
Annnon58 profile image
Annnon58

Ditto 😰

fbirder profile image
fbirder

Oh yes. Your story is all too familiar. It's why a lot of people here have chosen to take control of their lives and to self-inject.

ah1234 profile image
ah1234 in reply to fbirder

I wouldn't even know where to start.

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!

Foggyme profile image
FoggymeAdministrator in reply to ah1234

I wouldn't even know where to start.

Help here with that if route you decide to take 😄.

Easier than you may think.

Just put up a new post if needed 👍

ah1234 profile image
ah1234 in reply to Foggyme

Thank you ☺️

CCSP-27 profile image
CCSP-27

Some info please because there's nada coming from GP 😡

Dx PA last week ,1st injection tmrw BUT it's younger sons 30th bday and I'mworry there might be side effects as I've no idea ?

Are side effects usual ? I don't want to ruin my sons special night !

Can anyone enlighten me ? I should probably add my autoimmune system is up the left with antibodies coming up positive all over the show !

Exhausted 😑

ah1234 profile image
ah1234 in reply to CCSP-27

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.

Foggyme profile image
FoggymeAdministrator in reply to CCSP-27

No side effects for me...but everyone's different.

Happy celebrations 🎂

ellj profile image
ellj

No effects for me either way after first second and many more injections...Have a great celebration.

No side effects here either on any injections, and the nurse that does them is blind as a bat and has shakey hands

clivealive profile image
clivealiveForum Support

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.

ah1234 profile image
ah1234 in reply to clivealive

Oh I know. My dr doesnt seem to think I have enough neurological symptoms.....

Woken up today so unwell but have to go into work 😩

clivealive profile image
clivealiveForum Support in reply to ah1234

"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:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis"

These are classed as "neurological symptoms".

I hope you get to feel better as the day goes by.

ah1234 profile image
ah1234 in reply to clivealive

I cried that I couldn't squeeze toothpaste out of the tube 😂

If this carries on, I'm going to have a private consultation.

clivealive profile image
clivealiveForum Support in reply to ah1234

That's sad - and bad.

If only these "one size fits all" doctors could suffer the effects of P.A. themselves they would be more sympathetic.

I've had P.A. for 45 years but fortunately my doctor listens.

Do you know your iron and folate levels as these work together with the B12 and a deficiency in one or other may cause problems?

ah1234 profile image
ah1234 in reply to clivealive

It's awful and I'm already dreading 2 months time when I could feel the same again.

I've never seen my test results (which I know is bad as well). I will try and get hold of them.

Luckily my manager is very understanding but it makes me very frustrated that I can't work as much as I should be.

clivealive profile image
clivealiveForum Support in reply to ah1234

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. :)

CCSP-27 profile image
CCSP-27 in reply to clivealive

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 😡

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)

😡😡😡 Pragmatism prevails !

God forbid we could be allowed to be proactive in our own health!!

Cassyg profile image
Cassyg in reply to clivealive

I have neurological symptoms but they do not allow less than three

kmalbasich profile image
kmalbasich

Well, I know very well how you feel!

My illness crept up on me and took a tight hold.

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.

K

ah1234 profile image
ah1234 in reply to kmalbasich

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?

Cassyg profile image
Cassyg in reply to kmalbasich

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

kmalbasich profile image
kmalbasich in reply to Cassyg

I used to go to bed with two pairs of mountain climbing socks on!

Unless Dr has PA they are baffled by most of our symptoms!

Now I'm great never felt better!

kmalbasich profile image
kmalbasich

I am in Australia.

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

Good luck,stay strong!

You can make this better its all about you!

Sleepybunny profile image
Sleepybunny

Hi,

"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.

Are you in UK?

Do you have neurological symptoms?

B12 deficiency symptoms lists

pernicious-anaemia-society.... see checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK b12 treatment info

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.

BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

More UK B12 info

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

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.

Flowchart from BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

2) BMJ b12 article

bmj.com/content/349/bmj.g5226

3) Pinned posts on this forum.

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.

4) PAS (Pernicious Anaemia Society) website

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper's blog

Interesting stories about people with PA and B12 deficiency

5) B12 Deficiency info website

Lots of B12 info and an interesting blog

b12deficiency.info/

6) b12d.org website

b12d.org

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS.

8) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency. Lots of case studies.

"I've never seen my test results"

Access to medical records (UK)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

Unhappy with treatment (UK)?

Letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

I am not a medic just a person who has struggled to get a diagnosis.

kmalbasich profile image
kmalbasich

Yes Find Dr that works with you not against you.

Coachlady11 profile image
Coachlady11

Yes I had the same problem which is why I went down the self inject route and uts the best desicion I made

There are lots of people with the advice on what you need on here - if I was more tech savvy I would post the links myself!!!

Many doctors aren't clued up enough about this condition and the treatment is inexpensive so why they can't just listen to the patients I don't know!!

kirsten555 profile image
kirsten555

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!

evilellie profile image
evilellie

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.

Cassyg profile image
Cassyg

Yes they look at you like your crazy and start talking about the number of b12 in the blood and say it can last for six month bla bla

kmalbasich profile image
kmalbasich

Cant tell you how many DR's said your depressed you need antidepressants!

Er no thank you I work in emergency and see the effects and how bad that soloution is to a problem!

clivealive profile image
clivealiveForum Support in reply to kmalbasich

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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