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Pernicious Anaemia Society

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severe Pain

Breathless1943 profile image
20 Replies

Hi All,I’m new on this page so please bear with me. My GP after a blood test recommended I take Ferrous Sulfate 200mg per day.

Well I suffer chronic stomach pains,and have done for over 10yrs,to which I’m not entirely sure why,however that would take to long to go into. I’ve had the tablets now for about 2 weeks,but I’ve only took about 8 because every time I take one it enhances my stomach pain and gives me diarrhoea,. So I rang my GP,because I can’t get to see one,and he told me take my time take one when I feel like it as it’s not serious. So I’ve tried that,but I took one on Saturday and I’ve had diarrhoea and horrendous stomach pain ever since. Today is Monday. I’m certainly not taking anymore,but I just thought I would prick your brains in this group. Any suggestions.

I should say I suffer with multiple health issues,but my stomach is getting unbearable. Any help welcomed am I doing something wrong?

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Breathless1943
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20 Replies
Nackapan profile image
Nackapan

Ferrous fumarate may be better tolerated.Or solar gentle iron.

Spartone bug you would need several sachets .

My mum tolerates floradix.

Ard you b12 deficient ?

Breathless1943 profile image
Breathless1943 in reply toNackapan

I’m not to sure about B12,I’ll check my records.

Gambit62 profile image
Gambit62Administrator

Please note that although this forum has anaemia in the title it is really about an auto-immune disorder of the gut that prevents people absorbing B12 from their diet. This absorption problem can also affect iron.Have you tried speaking to the dispensing pharmacist to see if they have any suggestions as to something that you might tolerate better.

Jillymo profile image
Jillymo

Have you been refered to a gastrologist or had an endoscopy ? 10yrs is a long time to suffer without investigation ! It could be the fillers used in the prescribed meds upsetting you. I take active iron which is gentle on the gut

Has your B12 been tested ? If not request that your Dr tests it together with other vits. Write down your symptoms and take with you and explain how you have been suffering with your stomach and ask for a referal. Dont expect to be seen any time soon I have been told I could wait 67 weeks before being seen ! What a joke the NHS has become.

If you suspect a B12 deficeincy you could always do a private panel of blood tests - thats what I did. Take control and find out what is going on.

It seems you have several issues going on from reading your listings.

Breathless1943 profile image
Breathless1943 in reply toJillymo

You are so right I do have multiple health issues.But my stomach pain,well that’s a real problem for me. I have had it investigated I’ve had Barium Ennemia ( Probably spelt wrong 🙄) Sigmoidoscopy,Colonoscopy,I’ve had about 6-7 gastrointestinal specialist from all over the country,some I went private with. I did have 1 good GP,who was a great deal of help,but he retired. My last one was in Manchester but it was quite a way to travel for no results. I could go on but I would be here for a long time. I was tested for celiac but that was some time ago. My now GPs are of no use at all,I can’t even get to see one. You also say take control,well no offence,but if you asked my hubby I’ve spent hours trying to get some answers. I am now in the stages of waiting to see a pain specialist but I won’t hold my breath,as I’ve also been down that road,and I’m now addicted to 2 drugs that do nothing for me. But this pain specialist is supposed to be helping me. And he’s never met me. I’m just at my witts end.

Jillymo profile image
Jillymo in reply toBreathless1943

Aw bless you your story is very much like my own.

I have also spent a lot of money going private and been here there and every where. I have had a swelling on the left side of my abdomen for a few years but nobody can tell me the course. I went to see a pain specialist but all they offered were ways of coping with the pain and discomfort ! I want to know why and if it can be sorted but all they do is paper over the cracks.

I used to come out of consulting rooms in tears but not anymore. I am now angry and determined to fight my corner we shouldn't have to suffer like this. If you go to A&E you can be lay on a trolly for hours before being seen.

I am couldn't keep doing the London trips it was to much for me. I also have a new Dr but after 2yrs not been able to see him and it's even a job now days to speak to a Dr on thed phone. Have they checked your B12 ?

It is a constant battle to get answer's these days.

I hope you get to the bottom of this but in the meantime do try the gentle iron to see if it eases your bowel symptoms. I have IBS, Diverticular Disease, Hypothyroid ect.

It's not fare we have to suffer like this and have to battle just to see a Dr. If only we could turn the clock back to when Drs got to the root of the problem instead of us all running around like headless chickens.

Breathless1943 profile image
Breathless1943 in reply toJillymo

Boy you are so right. Years ago I had every faith in my GP, Consultants Ect. But now I question everything. I was told IBS,but this is constant when I’m awake,then it was the Perineal nerve,that means injection in my bottom part of my back,that’s where my osteoporosis is so no thank you. I then went and seen a lady Physiotherapist private,and she was great and honest with me,she told me she needed to work on my back,but because of my osteoporosis she wouldn’t touch me,and she said if I had seen her 10yrs ago she would have been able to help me. But she did give me some good advise,so I praise her for that even though the pain still there.My hubby wants me to phone for an ambulance or 111,but I’m not going in hospital because we have lazy GP. It’s time some one told them back to work or no pay. It’s driving me nuts,everyone sends you to someone else.

Jillymo profile image
Jillymo in reply toBreathless1943

At my surgery the Drs do a two day week and think they are hard done by. How I wish I could have spent more time with the kids instead of doing a full week and Saturday morning ! As for trying to get through to the surgery my phone goes flat because they keep you waiting so long. Grrrrr it makes me mad. 😡

If you ring 111 you get- have you got ear ache or have you got tooth ache it makes me want to scream no I have got bloody belly ache. I suffered heart failure and 111 was useless and took hours to respond. When I got there I was on a trolly in a corridoor for 11hrs.

They are putting lives at risk.

Sleepybunny profile image
Sleepybunny

Hi,

I'm sorry to read that you're in pain and hope you find an answer soon.

I'm assuming your iron levels are low if GP recommended an iron supplement.

What does the GP think is causing your low iron levels?

Have your B12, folate and Vitamin D levels been checked?

People on this forum often report deficiencies in these.

A Full Blood Count (FBC) might also be useful. There can be clues in the FBC as to whether a patient could have B12, folate or iron deficiency.

If you suspect you have B12 deficiency, the links below might be helpful.

Link about What to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

PAS can offer support and pass on info about Pernicious Anaemia

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

Have you been tested for coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

nice.org.uk/guidance/ng20

More info on Coeliac UK website

coeliac.org.uk/information-...

I'm not medically trained.

Breathless1943 profile image
Breathless1943 in reply toSleepybunny

Thank you I’ve been going through some of the links you sent me,but then we had visitors so I had to stop.

Narwhal10 profile image
Narwhal10

Hello Breathless1943,

I am so sorry to read and for how long you have suffered. Plus, other health conditions. I doubt very much you are doing anything wrong.

If you have enough energy, please report the effect ferrous sulphate has on you on the Yellow Card Scheme:-

yellowcard.mhra.gov.uk

and copy in your G.P. This is a way to protect ourselves. Unfortunately, we are not all the same and we can have sensitivities to medication or the fillers like Jillymo has said.

As others have suggested it may be worth asking for ferrous fumarate, or buying your own gentle iron or Spatone. (Keep your GP abreast of everything you do for yourself in writing is a recommend).

Please ask for all copies of blood results. You are more than welcome to post on here. But blank out your name, GP surgery and the like due to confidentiality.

Plus logging a symptom diary. Sorry I haven’t read your bio (which I normally do).

Best wishes

Breathless1943 profile image
Breathless1943 in reply toNarwhal10

Hi,Could you tell me how I can put my blood test on here please. I really would like the opinion of others,as I have no faith in my GP.

Narwhal10 profile image
Narwhal10 in reply toBreathless1943

Yes, certainly. (We all function on different levels. I had a ferritin of 17 mg/L which wasn’t flagged, only when it dropped to 7 mg/L.)

If you have a smart phone (or know somebody that does) or on an iPad then take a photo and then the 6th button in the rectangle below.

Reading across from left to right

B I U @ 🙂 and then click on the rectangle with a sun and mountain.

Options from top to bottom (on iPad) are :-

Photo Library (you’ve already taken the photo)

Take photo

Browse

Hope that helps

Breathless1943 profile image
Breathless1943 in reply toNarwhal10

So from the photo below,what would be your opinion.

Sleepybunny profile image
Sleepybunny

Links about accessing medical records

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Auto Immune Metaplastic Gastritis is another name for PA (Pernicious Anaemia).

Have you seen a gastro enterologist to investigate your gut issues?

If you have seen a gastro specialist, did they find any signs of gastritis (inflammation of stomach)?

NHS link about gastritis

nhs.uk/conditions/gastritis

Link that explains what PA (Pernicious Anaemia) is.

pernicious-anaemia-society....

B12 deficiency can affect every body system, causing many different symptoms.

Do you have any symptoms that are consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Breathless1943 profile image
Breathless1943 in reply toSleepybunny

I have the NHS app,so I can see my records but of course understanding them is another thing. I have check and noticed on my last blood test I am folate deficiency. So I take it that’s the reason for the Ferrous Sulfate. But my GP assured me there’s no urgency. I also take Folic Acid,and to tell the truth it’s just all mind boggling to me.

Sleepybunny profile image
Sleepybunny in reply toBreathless1943

Ferrous sulfate is an iron compound used to treat iron deficiency anaemia.

NHS link about ferrous sulfate

nhs.uk/medicines/ferrous-su...

Folate deficiency would usually be treated with folic acid.

It is vital that in someone who has both folate deficiency and B12 deficiency that both deficiencies are treated. B12 treatment would usually start first.

Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological damage.

Do you mind me asking what your last few serum (total) b12 results were?

NICE CKS guidelines B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Breathless1943 profile image
Breathless1943 in reply toSleepybunny

My only way to show you,I hope you can see.

Pale blue
Narwhal10 profile image
Narwhal10 in reply toBreathless1943

Well done on uploading a photo, technology can be tricky.

So on 23 November 2017 your ferritin level was 26.1 and then 11 on 22 June 2022.

Sorry, I haven’t put in the units and the latter one has been flagged as abnormal.

The laboratory have not put in their reference ranges. Also, symptoms of both PA/vitamin B12 deficiency and iron deficiency anaemia are :

Shortness of breath

Dizziness (proper name is presyncope)

High heart rate at rest (proper name is tachycardia)

Fatigue (exhaustion after doing a simple task)

Please do check what other bloods were taken - vitamin B12, folate and vitamin D as they are extremely important too.

Breathless1943 profile image
Breathless1943 in reply toNarwhal10

Thank you for your help,much appreciated. I take vitamin D tablets,but the rest I’ll check out.

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