Symptoms that led to diagnosis - Pernicious Anaemi...

Pernicious Anaemia Society

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Symptoms that led to diagnosis

Knic profile image

Hi,

I’m just wondering peoples symptoms that led to diagnosis?

At the moment I’m feeling a bit of a mess- something is clearly going on with me but just not sure what. My symptoms include-

Tingling/pins and needles in both hands and feet? It happens throughout the day.

I also get whooshing in one ear like in time with my heartbeat.

My period is now over a month late (not been the same since COVID jab but could be a coincidence)

I experience episodes of lightheaded ness, and feeling like not getting enough air in like tight chested

I have been to the dr who did an ecg (normal) and I am getting bloods done next week, also seen a gynaecologist who is doing hormone blood tests and a scan in August.

Just wondering if anyone has had similar?

23 Replies

Symptoms do overlap with so many things/ conditions.I assume your b12 folate ferritin iron snd vit. D wil br included on a FBC

If not get them put on.

Keep a print off of blood results.

As an 'in normsl' range some are stil poorly with b12 deficiency

God you havibg investigations already .

On the PAS society Web. And on b12 deficiency o org.

A full list if symptoms.

It is long.

Hope your bloods give some answers

Knic profile image
Knic in reply to Nackapan

Thank you so much!

Pins and needles in hands and feet is a classic sign. Also breathlessness.

I had pins and needles alot. Mainly fatigue, irritability but also a feeling of heat in the body especially at night.

Over time the pins and needles turned to partial loss of feeling in hand and foot. So great you're getting bloods done now

Interestingly I never got that .I know a classic sign.

Plenty if others on thst long list though.

All different.

Another reading gard to diagnoses.

My sister got thay as an early sign but nipped in the bud with oral b12 .

Her arms nd hands got painful.

Thank you, hopefully you’re feeling better now?

Fingers crossed if it is something like that, then the Dr has requested the correct tests to pick it up x

I get the heat feeling mainly in my fingertips, especially with the pins and needles.

Fatigue. Debilitating fatigue.y son was on probation and I couldn't even sit next to him without falling asleep. The judge removed him from my care pending physician care.

Pins and needles are more recent.

Head fog.

Dizzy spells.

Knic profile image
Knic in reply to Sgboyd

Sorry to hear this :(

Tingling and numbness that eventually spread through my whole body. Internal vibrations. My back getting real hot. Couldn't breathe. Pulse kept dropping into the 30s. Would get up, walk across the room and my head would fill with pressure. I couldn't hear until it passed. Pressure in my head, blurry vision, pins and needles... sometimes feels like needles under my toenails. Severe constipation. Can't think straight. Memory sucks. Brain skips? Like it shuts off for less than a second (very scary). Heart feels weird. Doctor says extra beat. Been to cardiologist who says the heart monitor is normal with my pulse at 43. He ignored everything I told him. Internist said it was all in my head and wanted to start me on antidepressants. He asked me what I thought was wrong. I told him pernicious anemia. He said it wasn't but he would test my B6 to shut me up. B6 came back normal. On vacation in another state I couldn't breathe, pulse was 32. I was fainting, couldn't breathe, ect. Nurse practioner ran bloodwork and did some MRIs. I am now on weekly B12 injections. I need to find a neurologist and a urologist. I'm just so sick of mean doctors.

Sallyannl profile image
Sallyannl in reply to Ninagreen

Nina green,You are like many of us a hypochondriac with real symptoms that doctors ignore.

I can relate to everything you say, just to reassure you will improve... it takes time

lynxis profile image
lynxis in reply to Ninagreen

I also had/have bradycardia, hypotension, and extra beats and also have been ignored by mean doctors. The internal vibrations and tingling (like an electric current sensation) were very powerful and disruptive. I would have spells where those sensations along with racing heart would wake me up every night at 3 am.

I feel for you. I finally just found a nurse practitioner who was willing to run the yearly labs that I want, and I order my own B12. I don't even talk about it, beyond the fact that I have PA. I don't want to make myself vulnerable to doctors anymore. They won't listen to me anyway, and I know how to manage it. If I said that I was on several injections a week, they'd just think I was even more crazy. The trauma from being so sick is bad enough; the trauma from being ignored and maligned is totally cruel and unnecessary. I hate that anyone has to go through that. It wouldn't have have taken so long to figure out what was wrong, and I probably wouldn't have permanent damage and such frequent injections if they had just taken me seriously in the first place.

Knic profile image
Knic in reply to Ninagreen

It’s so hard to find a dr who listens and actually understands- or even knows what to do. Can definitely relate to the brain skips, that’s a perfect way to describe it!

charks profile image
charks in reply to Ninagreen

Very interested in your 'brain skips'. I also had that before starting taking b12 supplements. I actually had a very minor car accident and I still don't know how it happened. Unfortunately it was in our brand new car. Luckily it was just a minor scrape and I have a very understanding partner. It hasn't happened since but I am still not driving just in case. I will wait until at least a year goes by without any more 'brain skips'. Is this a common thing with B12 deficiency.

Ninagreen profile image
Ninagreen in reply to charks

I'm not sure. It's like I stop thinking for less then a second and then it's back. Almost like when you are very tired and about to fall asleep and boom I'm back. But it happens when I'm awake. The doctor thinks maybe seizures and wants me to see a neurologist. I only seem to get it now when I've gone too long without an injection. Which right now is less than a week. I can tell I need more than once a week, but my doctor says I have to see a neurologist to get them more often.

charks profile image
charks in reply to Ninagreen

Very similar symptoms to me. My'brain skips' happened when my GP told me my B12 levels were too high and I stupidly stopped taking B12. Within 3 weeks I was experiencing severe B12 deficiency symptoms - including the 'brain skips'. It came to head when I passed out without warning. It was a minor re-occurrence of my major 'episode' last April when I lost consciousness for over 30 minutes and couldn't walk or talk for over 2 hours afterwards. A&E told me I had just fainted.

As I am one of the lucky ones who find that oral B12 works I resolved then and there to ignore my doctor and go my own way. I wish the doctors could actually see all the problems their erroneous advice causes. If only they could live in our bodies for a week.

Ninagreen profile image
Ninagreen in reply to charks

I did the same thing in 2017. My neurologist told me to stop taking the 5000 sublingual because my b12 was 800. It's been downhill since then. I luckly found a nurse practioner who is familiar with B12 and put me on weekly injections 3 weeks ago, but they wear off too quickly.

I believe my first symptoms were migraine so I began on a path for treatment regarding those. Similar to you, my first visit when I began having additional symptoms was to a gynecologist who misdiagnosed me with PMS. Symptoms continued to develop and I was sent to a gastroenterologist because I had severe acid reflux symptoms despite being on a PPI, This doctor tested me for b12, magnesium and calcium since PPI’s can cause absorption issues. He was stunned when my b12 came back low. I had not shared my other symptoms with him other than the severe acid reflux though I do remember questioning him about my unexplained weight loss. I had all the classic b12 deficiency symptoms: so tired I could not get out of bed, lack of concentration, dizziness, no taste buds, hence the weight loss, anxiety, feelings of panic, bladder control problems, heart palpitations, electric jolts in my feet, tingling hands, coordination issues. I also felt like I was losing my mind which I didn’t share with anyone. The path to proper treatment has been tough for me as many have experienced on this forum but I am so much better now. I also had hormonal testing because my first complaint to my gyno was a dip in sex drive. Those tests came back normal. I was also having trouble concentrating to read. Other than the migraines, I believe theses were my earliest b12 deficiency symptoms. Good luck!

Knic profile image
Knic in reply to mcg-woo

Thank you! I can relate to so many of your symptoms xx

Before I was diagnosed I was so run down, sleeping all the time, body was heavy and hurt. I had a full blood count and alot of tests done privatly while I was still at uni and something came up as I was fighting a bug or flu but then after I had a B12,Vit D, Folic Acid tests and these were all very low, rock bottom low.

I have on going issues after childhood cancer treatment so I am always followed up by a endocrinologist and this is how I found out I was very low and low on other things.

I too have missing peirods and my hormoans are fine from tests my gp has done for me, and this started way bfore covid .

I didnt know of many other people with this issue and has b12.

I would ask to have your Vitamin D, B12, Iron, Folic Acid tests because these can all cause symtoms the same symptoms or if you have a few that are low it can make you feel worse.

Your doctor can get you appointments to see a Endocrinologist and Hematologist and they will test you for these things if your doctor wont like mine have an issue giving me a Vitamin D testeven though they should be monitoring me so I have to go through the hospital or do a private home test at my exspence.

Hope you get the help you need

Best wishes

Little A

Knic profile image
Knic in reply to LittleA

Thank you so much, sending best wishes to you too! X

Best of luck to you in your treatment! I believe I had symptoms for years (ignored by my Dr) or decades before my diagnosis. Balance, forgetfulness, fatigue, breathlessness, escalating until at diagnosis I was hallucinating, barely able to walk, sometimes unable to speak, l'hermitte's response (electric shock down extremities when tilting head down), mouth sores, esophageal webbing (ick!), I was like a zombie and assumed death was near and didn't care. Under treated after diagnosis and finally, after three years and so much support from this forum, I am properly treated and almost all of my symptoms have resolved. Don't give up! Sending good thoughts your way.

Knic profile image
Knic in reply to Emmers5

Thank you so much, and sorry to hear what an awful time you have had 😧 I’m so glad you’re doing much better now. What results or tests led them to diagnosis you?

Emmers5 profile image
Emmers5 in reply to Knic

My MCV was elevated and so Dr finally ordered a B12 test and my level was undetectable. So many years lost but I try to focus on being grateful that I am very well now.

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