Anybody recognise these symptoms - Pernicious Anaemi...

Pernicious Anaemia Society

24,424 members17,149 posts

Anybody recognise these symptoms

Sibby123
Sibby123

hello Iv been looking for answers for 10 years b12 came normal folate high but still haves these symptoms does anybody relate to these , any input will be much appreciated

Tiredness

Weight gain

Cold hands and feet

Sweating a lot

Pins and needles in legs, feet, arms, hands and fingers

Breathlessness

Dizziness

Clumsiness

Bumping into walls

Stumbling

Lurching to one side when standing upright

Losing balance

Tremor

Broken sleep

Loss of libido

Muscle cramps in legs

Joint stiffness

Loss of stamina

Feeling cold

Muscle pain

Joint pain

Loss of appetite

Loose stools

Heavy periods

Poor focusing

Double vision

Puffy eyes, face, feet and ankles

Difficulty swallowing

Dry mouth and

eyes

Memory loss and confusion

Poor concentration

Mood swings, depression, nervousness, anxiety

Random ringing and rumbling in ears

Deafness

Dry, flaky, coarse, pale skin

Itchy skin

Muscle spasms

Burning

sensation in chest and throat,

Burning sensations down thighs

Numb sensations up lower legs

Poor circulation in legs, feet, hands and arms

Dry/chapped lips

Mucus buildup in throat

Bruising

Pain/fullness in ears

Pain in soles of feet

Visual snow

55 Replies
oldestnewest

Have you had your thyroid checked. Many symptoms overlap. Some of thises symptoms cry out thyroid problems.

Thyroid healthunlocked will say which ate the most comprehensive tests to do.

Also a full iron panel including ferritin. And vit d.

Perhaps a referral to ENT

Sibby123
Sibby123 in reply to Nackapan

Thankyou very much for replying , sorry should have mentioned I was diagnosed with hypothyroid in 2017 it was due to having a baby and after a short while of treatment it stayed normal so they stopped my medication , Iv also had brain mri cervical mri thinking it could be my neck but came back normal , literally fed up feeling this way with no answers doctors look at my list of symptoms and think Im nuts.iv never posted in a forum but I googled my symptoms again and came across this website for P.A.

Iv had bowel issues since the age of 16 on and off doctor mentions gluten intolerance so past two days Iv gone gluten free aswel.

Also symptoms I forget to mention

Formication

Feeling like can’t take a deep breath it’s intermittent

For the past 10 years have been wobbly on my feet

Nackapan
Nackapan in reply to Sibby123

Do you have blood tests to keep an eye on your thyroid levels.

Did you get a copy of your bloods to see what your b12 is?

Are you aware of functional b12 deficiency.

Keep going with eli.inating things to find out what is wrong. T C

Sibby123
Sibby123 in reply to Nackapan

Doctors so far have unfortunately been of no use will have to try finding answers my self , Thankyou

Nackapan
Nackapan in reply to Sibby123

In that case you can get private blood tests done . ? And get referral s to specialists . Of courses you would have to see your Gp. Gateway to many services.

I'm sorry you've lost faith in doctors. I can understand that but we have to work within the system or go private . Do get investigations s done . Bit like having to kiss many frogs before the prince ...or something like that.

Sibby123
Sibby123 in reply to Nackapan

I do agree with you and also about you mentioning functional b12 , also would you say that b12 defiency symptoms move around the body for example one day your legs feel next day your arms then the feeling comes back but your hit with another symptoms

Sibby123
Sibby123 in reply to Sibby123

Also light and sounds bother me some days I can have a great appetite some days appetite is fully gone and smell of foods make me sick

Nackapan
Nackapan in reply to Sibby123

The nausea comes and goes for me. I dont have the symptoms around the body like you explain. I do get aching hips I didnt before. Alot of my problems are nerves in my head . Maybe occipital neuralgia or visual vertigo or a general vestibula disturbance. I also have light sensitivity ans noises sensitivity. The noises sensitivity has greatly improved . The light sensitivity to artificial lights remains.

So as you csn see a huge variant.

Try and get onto the 'system ' to get seen . Thete ate some good ones put there . Its finding them. Everything on hold at present bit definitely get bloods done and keep a copy. I went through your list and I could add 5 and take away 5 as different .

fbirder
fbirder in reply to Sibby123

See a neurologist.

Sibby123
Sibby123 in reply to fbirder

thanks for replying I Have already seen a neurologist and a rheumatologist, the second suggested fibromyalgia, doesn’t really fit symptoms for that diagnosis .

Sleepybunny
Sleepybunny in reply to Sibby123

If you have gut symptoms, have you been referred to a gastro enterologist?

In UK, guidelines suggest that GPs should seek advice from a haematologist for people with b12 deficiency with neuro symptoms .

Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H pylori infection and other gut conditions.

Is there any chance of internal parasite infection eg fish tapeworm?

Do you mind me asking which country you are in?

I'm asking because patterns of treatment and types of B12 used in treatment vary between countries.

You said your b12 test was normal. What was the number (with range attached)?

Sibby123
Sibby123 in reply to Litatamon

Sorry I don’t have the values , test was done in 2016 same symptoms only worse now.

Litatamon
Litatamon in reply to Sibby123

You need to get your exact numbers Sibby. It is important.

Request them. And it might be wise to take another b12 test (I am assuming you are not taking any b12 supplementation).

Litatamon
Litatamon in reply to Litatamon

Just went through your symptoms and I had thirty-nine of them. Note that I had very low vitamin d, at the same time as having a b12 deficiency.

Sibby123
Sibby123 in reply to Litatamon

Did you have the wobbly leg feeling and feeling like you can’t hold your head up , Thankyou for reply

Litatamon
Litatamon in reply to Sibby123

Yes on both.

My legs were awful, I could hardly walk anymore. (And I wasn't casual in my exercise activity). And I could actually put a knife tip into my calves and feel nada (I started testing close to asking for a b12 test - ie. wasn't playing with knives 😁)

The head question made me laugh, thinking back. I remember saying to a loved one - it is like my head is too heavy for my neck! I can't hold it anymore. Do you think it is the bike helmet? 😆 Laughing because the thought process is b12 in itself, as if a bike helmet could produce that.

Sibby123
Sibby123 in reply to Litatamon

oh yes it feels exactly like that , head just feels like it will drop off , the leg feeling is horrible when you stand you feel like your moving everywhere and you will just fall to one side , the muscle twitching. Thanks for the reply

Kazania
Kazania in reply to Litatamon

I had this “can’t hold head up” , also Gut probs (told it was IBS, and dismissed) I have half- heartedly done GF, it made me feel much better, so I will be making more effort, so you could look in that too. Diagnosed first with CFS, then B12 and Hypo. Take everyone’s advice re testing and ranges, and supplements, I did and am much much better. If you had hypo once you’ve maybe got it again, so you need to get tested. I hope you begin to feel better, as I am sure you will if you follow the advice from all the really knowledgable and helpful people on this forum. Best wishes.

Sibby123
Sibby123 in reply to Kazania

Thankyou very much for your insight it does help , I will definitely be more vigilant with the doctors now get more tests specially thyroid and b12 and also antibody tests, I will post my updates on here.

Kazania
Kazania in reply to Sibby123

Good Luck

Sibby123
Sibby123 in reply to Kazania

Many thanks 😊

Sibby123
Sibby123 in reply to Litatamon

I also had low vit d and taking supplements from docs

Litatamon
Litatamon in reply to Sibby123

Retested? Vitamin d.

Sibby123
Sibby123 in reply to Litatamon

Yes last blood test for vit d wer fine and doc said keep on the vit d which I am .

Sibby123
Sibby123 in reply to Litatamon

Thanks again for taking time to reply , well I did for the past two weeks start taking a b complex and noticed my legs didn’t feel so wobbly when standing up so that’s why made me believe even more must be b12 or one of the b vitamins

Marz
Marz in reply to Sibby123

Really important to obtain all your test results with ranges - so you can monitor your own progress and check what has been missed ! They are legally yours ! You can phone to make a request for them. Many surgeries have on-line access so worth enquiring.

How long ago was your thyroid treatment stopped ? Of course it would appear as if your thyroid had corrected itself - because you were on treatment - SIGH ! Spend time reading the Thyroid Forum here on HU and you will quickly see how shocking thyroid testing and treatment can be.

When thyroid is low then so will your vitamins and minerals .... Private Testing is available through Thyroid UK - this will ensure you have all the correct tests - the ones not done in the NHS.

I have Hashimotos but also pop here to keep up to date with the good B12 knowledge !

Happy to help ...

Sibby123
Sibby123 in reply to Marz

Thankyou for the informative reply , i know with hypothyroidism you gain weight I can’t seem to put weight on , it’s also says constipation I’m the other way round , I will book another blood test for the two hopefully will find answers as you can see I’m fed up symptoms started 10 years ago and thyroid was checked and normal every time until I had baby. Whenever I google my symptoms keep bumping into b12 that’s why I’m here. Iv seen Specialists have also had scans of neck brain still no answers .

Marz
Marz in reply to Sibby123

Always good to rule things out ! Normal is something Docs say when you are in range - but it is where you are in the range that is the magic key to wellness ...

Not all hypo people gain weight. With Hashimotos you can swing from Hypo to hyper. Make sure you have more than the TSH tested - and check for TPO Anti-bodies. Sadly the correct testing is rarely done in the NHS and so people remain undiagnosed and poorly treated. Good luck !

Sibby123
Sibby123 in reply to Marz

Thankyou I will ask for that test if I ever do find the cause I will share it so nobody else has to suffer.

Marz
Marz in reply to Sibby123

You can be gluten sensitive without being a coeliac. This is a common issue with Hashimotos sufferers ...

Sibby123
Sibby123 in reply to Marz

Well after you mentioned Hashimotos Iv been looking thoroughly at the symptoms and it could be that , did any of my symptoms match yours , so if you gluten sensitive can you still consume gluten ?

Marz
Marz in reply to Sibby123

I was not diagnosed until I was 59 - after many years of illness. I had gut TB - then Crohns diagnosed - lots of surgery resulting in B12 uptake issues. I am now 74 and only take my Thyroid medication plus lots of supplements and a weekly B12 injection. You can click onto my username and read my Bio/Posts ....

Having tests done privately at home if possible will ensure the correct ones are done.

thyroiduk.org

Avoiding gluten can reduce gut inflammation and improve absorption. I avoid gluten as much as possible and can be unwell if I consume it ... painful joints is one symptom ...

Litatamon
Litatamon in reply to Sibby123

If it is a b12 issue, the low amount of b12 in the b complex would lead me to believe you do not have an absorption issue. But then again b12 might not be the issue.

Are you vegetarian or vegan Sibby?

Sibby123
Sibby123 in reply to Litatamon

No I consume a lot of meat , but have some digesting issue I have loose bowels every day (sorry tmi) doctors said go gluten free been 2 days so too early to tell if it is that problem. Since early teens my stomach used to give me problems on and off.

Litatamon
Litatamon in reply to Sibby123

The only reason I asked is because you felt some change with the b complex.

---------

Have you been tested for celiac? Asking because that could cause b12 issues.

Sibby123
Sibby123 in reply to Litatamon

They haven’t tested me , last time I saw th me doctors he said your stomach issues sound like you might be reacting to gluten so cut that out and see how it goes , past two days Iv stopped , too soon to see if that is the issue today my stomach wasn’t as loose so just wandering is it that , also I’m aware that celiac can cause neurological symptoms aswel.

Hi,

I can say that I had majority of symptoms you have listed.

Visual snow has a link with migraine and migraines can be associated with B12 deficiency.

Might be worth seeing a neurologist who understands migraine.

Apologies for short reply as busy with something else.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

Have you thought about joining PAS who can offer support and info about PA?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

BSH Cobalamin and Folate Guidelines (UK document)

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates.

Useful B12 book

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info is out of date. See BNF link in this thread for up to date info.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

Sibby123
Sibby123 in reply to Sleepybunny

Thankyou very much for replying, I mentioned all these symptoms to a neurologist he didn’t consider b12 this was in 2014 , he then ordered a Brain mri and a neck mri which came clear and literally said to me stop stressing and all your symptoms will disappear, they didn’t disappear just got worse with time , Iv looked into all possible cases and my symptoms do match b12 the most I can’t obviously say that the cause but it’s definitely a possibility as my dad is also on b12 injections from GP . I will find out on Monday what my b12 values were . Hopefully I can get to the bottom of this soon

Sleepybunny
Sleepybunny in reply to Sibby123

Hi again,

"it’s definitely a possibility as my dad is also on b12 injections from GP"

Does your dad have a diagnosis of PA (Pernicious Anaemia), Coeliac disease or other condition that can lead to B12 deficiency?

Is your GP aware that your father is having B12 injections. If not , worth mentioning it in any letter/conversation with GP.

I recommend putting queries about treatment/diagnosis into a short, polite letter to GP/specialist as harder to ignore.

There are many potential causes of B12 deficiency.

Do any of these below seem likely?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"doctors he said your stomach issues sound like you might be reacting to gluten so cut that out and see how it goes"

Cutting out gluten might make it difficult to diagnose coeliac. See guidelines below for more info and also worth talking to Coeliac UK. There is a helpline on their website.

NICE guidelines Coeliac Disease suggests that anyone with unexplained B12, folate or iron deficiency should be tested. Check guidelines below to see which tests are recommended.

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Coeliac UK helpline

coeliac.org.uk/information-...

Any exposure to nitrous oxide?

Nitrous oxide is in gas and air mix used as pain relief in labour. It's sometimes used in anaesthesia.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Parasites

Do you ever eat raw or uncooked fish eg sushi/smoked salmon etc?

If yes, has the possibility of fish tapeworm been considered?

One potential sign of fish tapeworm infection is a rise in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.

There are other parasites that can lead to B12 deficiency eg Giardia Lamblia. Have you lived or stayed somewhere where internal parasites are common?

Some medicines and drugs may affect B12 levels (and some may affect folate levels) eg metformin a diabetes drug.

"I will find out on Monday what my b12 values were"

Best piece of advice I ever got was to always get copies of or access to all my blood test results. I was told on several occasions that everything was fine and when I got copies, I found abnormal and borderline results.

Suggest you look particularly at B12, folate, ferritin or other iron tests, full blood count (FBC).

When GPs suspect B12 deficiency they often look for enlarged red blood cells (macrocytosis). As you say your folate level is high, I wondered if high folate level could be masking a B12 deficiency.

"I also had low vit d and taking supplements from docs "

"well I did for the past two weeks start taking a b complex "

What's in the B complex?

Access to medical records (UK)

nhs.uk/using-the-nhs/about-...

bma.org.uk/media/1868/bma-a...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Thyroid tests

thyroiduk.org/getting-a-dia...

More info in the threads I linked to at bottom of my first reply.

Worth looking at pinned posts on this forum.

Sibby123
Sibby123 in reply to Sleepybunny

Thankyou for reply , dad had blood tests and they confirmed b12 didn’t bother looking for cause just put him on monthly injections, did have gas and air also epidural don’t know how that will cause deficiency will look into that , celiac yes possibility so have gone gluten free. Will definitely look into the causes. Might not even be b12 really appreciate everyone’s input though, never have posted on any forum this one for some reason felt I should talk to other people people about it.

I had all of the above. Working on my b12 and thyroid made no difference. Finally I did an oral glucose tolerance test with insulin response and determined I produced excess insulin which caused severe hypoglycemia. Working on that made the world of difference.

Thankyou for your input , so are you on any medication for that , also what causes that ?

Hi Sibby 123,

I eat a plant based , gluten free Whole Foods diet. I eat mostly beans and greens and avoid all processed foods. I have proven through multiple tests that if I have sugar, my glucose goes high, then my insulin goes high, then my sugars end up at a level where I’m sleepy, sweating, shaking and unable to think before eventually rising about an hour later. When I’m strict with my diet my glucose barely budges and I feel amazing. I also lost weight quickly. It’s not always easy though and then the sweats and shakes return as well as the weight. Rice and flour produce exactly the same reaction as sugar.

The cause of hypoglycemia is insulin resistance, which, if the pancreas is strong enough, can cause insulin overproduction and then weak adrenals that have a hard time correcting for it

There is no medication for it although I do take supplements including vitamin d, zinc, berberine and one for adrenal support. I take a bunch of other supplements for my PA, thyroid and Epstein barre

universityhealthnews.com/da...

very informative reply, Iv been tested many time’s and my blood sugar is always normal I have a testing machine at home and it’s always around 6-7 my mum was a diabetic so I know how they can be fluctuations with the reading if you have insulin issue, I will look into that but I honestly don’t think it’s that as my symptoms are more neurological In nature , mum used to have hypo attacks and the low energy feeling drained dizzy I so my mum go through that then giving her glucose tablets and feeling normal again , I don’t feel normal whether I consume food or not , I do have days when symptoms are better but not completely gone .

Onedge
Onedge in reply to Sibby123

I understand your comments but I think all symptoms are worse, I especially have very low body temp, high pain, no energy , and inability to move, trigeminal neuralgia and occipital headaches for four days until my thyroid sorts itself out. My neurological problems are completely down my left side and they are with me 24/7 but some days are so disruptive I don’t know what to do with myself. I feel as if I’ve had a stroke or about to have a heart attack and I simply have to endure four days of supreme agony. This happens quite regularly but I’m sure my dose of thyroid just helps me get through it. I have Sjögrens and I think my neurological and fibromyalgia disability comes from that disease. Have you been tested for this?? Also, one final word is that you could have Hashimoto’s thyroiditis in that your thyroid levels go up and down ( so appear in range) and so the blood tests are not catching the high or low levels which is when all your symptoms , like mine, get worse. You need to take blood test always at 8.30 am in the morning. The doctor should listen to all your symptoms and keep looking for answers but unfortunately it’s just up to us to keep trying new things like gluten free diet, no dairy, caffeine free etc etc. I also have no oestrogen, no testosterone, low vit d , low folate, low vit b12 as my gut doesn’t absorb vitamins or make hormones very well. Have you had all these tested?? I know how miserable and alone you feel when looking at healthy people doing so much all day long and how horrendous it is when you have to depend on a wheelchair or others for help with simple chores. Endurance, resilience and perseverance are all words that come to mind. Please go back to your doctor and ask for help and consider changing doctors if he offers none. I was lucky I was transferred to a new doctor when mine died and he phoned me up straight away and said ‘why hadn’t I been treated for hypothyroidism ?’ and sent out Levothyroxine there and then. Biggest Problem of course is it’s all invisible suffering and they just don’t understand the complexity of the body when it all goes wrong. I know you are living in a nightmare just now and it’s very hard to endure as you think that everybody thinks you are a hypochondriac because everything hurts , all parts of your body are dysfunctional. I’ve been there. I honestly feel a little thyroid would help make you level out a bit and not have deep troughs to contend with.

Im sorry i can’t say these problems will disappear because for some reason they haven’t for me but making your day a little easier to get through is a great way to start. Don’t give up! My thoughts are with you. Good luck.

Yes to all those. I can’t believe we suffer so much each minute of every day. Amongst all the separate diagnoses the one that has helped me most is being hypothyroid and having daily Levothyroxine. It’s such a struggle. I have so many medications it makes me feel sick just thinking about them and swallowing them every few hours. Have you had a thyroid test??

Sibby123
Sibby123 in reply to Onedge

Hello ,

Well yeh after I had my baby in 2017 that’s only the time the blood work showed I was hypothyroid , doctor said it’s common after having a baby put my levythyroxine 100mcg and kept doing regular blood test then it normalised and I kept off them for couple of months tested again and they went in the normal range so doctors said don’t need meds for that anymore , these symptoms are just horrendous I don’t complain often first time Iv ever posted on a forum , I’m grateful for the amount of response Iv had thanks to you all.

Aww many respects to all of you taking your Time out to reply, well right now doctors don’t really want to see you face to face so that’s a problem in it self , your one sided body symptoms reminded me of myself my problems are more on the left also feels like my leg arm will give up ,my aunty also had that problem she’s a lot older than me doctors gave her mri which was clean then put her on b12 but that didn’t seem to help her maybe takes time . Definitely the doctors think I’m hypochondriac today woke up with pins and needles in both arms and soon as I get up it goes I’m definitely not imaging the symptoms doctors also put me on antidepressants in the past with no improvement what so ever , I need to have fresh blood test for thyroid , if you have Hashimotos can you also have periods of hyperthyroidism? Because my symptoms don’t just go with low they match the high aswel .

Yes it’s dreadful not being able to feel normal and you worry what symptoms will I habe the next day some days feels like your dying I feel the same 😞

Sibby123
Sibby123 in reply to Sibby123

Also yes on I had vitamin d defiency and still on treatment for that .

I had hypothyroidism in 2017 was on 100 mcg then for some reason doctors took me off saying after having a baby it’s a temporary thing , need to be retested it seems.

Rheumatologist said I have fibromyalgia.

I saw a neurologist who did brain and neck mri and 2015 and said it’s fine he thought I’m a hypochondriac.

UPDATE* I rang doctors and I’m low in iron so they will put me on them today that’s the only blood test done recently.

Hi Sibby123 I’ve messaged you. Sorry for late reply to your Question

Sibby123
Sibby123 in reply to nano2

Hi , Thankyou so much for replying , can’t seem to find your message In side the inbox xx

nano2
nano2 in reply to Sibby123

Replied now Sibby123

You may also like...