IDA - help on basic questions - Pernicious Anaemi...

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IDA - help on basic questions

Mandyq profile image
15 Replies

Apologies if this is posted on the wrong site but I’m hoping for answers on a couple of basic questions relating to IDA and I’m not sure where to turn.

During the Summer I felt increasingly fatigued and suffered dizziness on standing up plus occasional racing heart on the least exertion. My GP brought forward my annual blood tests and after having two lots of blood taken / tested he diagnosed IDA. He promptly referred me for endoscopies and these came back “clear”

So I’ve now been on Ferrous sulfate for 3 weeks and due to have repeat blood tests in 8 weeks, my questions are:-

1) how quickly should I expect to feel better (ie less tired, less dizziness etc) I expected to feel some improvement by now but I still feel rough, particularly in the mornings. Am I being over optimistic and is this a long haul condition

2) I also have polymyalgia (taking prednisolone), steroid induced type2 diabetes (taking metformin and dapagliflozin ) plus high BP (taking Ramipril) + for good measure Omeprazole and Adcal. Is there any evidence that any of these medications - or a combination of them- may lead to IDA.

I’m 75 and was reasonably fit and active until diagnosed with PMR in 2022. Since then it’s been downhill all the way.🤣

Apologies for the length of this missive but I’d really welcome any advice / suggestions on living with this.

TIA

Mandy Q

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15 Replies
Jillymo profile image
Jillymo

Hi Mandyq.

Did the Dr test your B12 ? I am not medically trained but the answer to your question is yes......... B12 levels were observed to be significantly lower in Omeprazole patients than in Pantoprazole patients. A vitamin B12 deficiency is 0.5 times more likely in patients taking PPIs.

It depends what they were looking for or if they took biopsies when they did the gastroscopies. It's a shame they didn't follow up with a colonoscopy.

Metformin is another that can cause a B12 deficiency....... metformin can commonly reduce vitamin B12 levels in patients, which may lead to vitamin B12 deficiency. the risk of low vitamin B12 levels increases with higher metformin dose, longer treatment duration, and in patients with risk factors for vitamin B12 deficiency........... nhs.uk/medicines/metformin/...

I was quite recently Diagnosed with PMR ( which was exceptionaly painful to say the least ) and like youself was put on prednisolone. Although it eased the pain I started to experience vision disturbance and had to come off of it. Much of my joint pain has improved since being on B12 albeit has been a lengthy journey!

My advice is to get a copy of your blood test results, look to see if you were screened for a B12 deficiency, if possible pop the results on here. Your on quite a combination of meds of which all have side effects. Your BP needs a close eye kept on it ( I too was put on ramipril ) but couldn't get on with it. There was no interaction found with ramipril in regard to a interaction with B12.

I would keep a copy of symptoms, you have good reason to question your Gp of the possibility of a B12 deficiency and push for a trial of B12 injections to see if they improve symptoms..........

111.wales.nhs.uk/encyclopae...

I hope you feel better soon.

Nackapan profile image
Nackapan in reply toJillymo

Sorry missed your reply .Will leave mine on even though some repeats !

Jillymo profile image
Jillymo in reply toNackapan

I have only just popped it on Nackapan and two heads are better than one. This ladys on quite a combination of meds and agree she needs careful monitoring. As always you have given very good advice and explanation.

Mandyq profile image
Mandyq in reply toJillymo

Morning - thanks for the detailed reply.

B12 was one of the bank of tests - it came out at “242” which I think is just about the lowest end of normal. Having read the metformin patient info leaflet I raised this with the GP but he beguiled me with details of platelet size and shape and basically said it wasn’t the cause. I’m not convinced!

But nothing in the tablet leaflet for Omeprazole so I’ll raise this at my next appointment

Thank you

Jillymo profile image
Jillymo in reply toMandyq

Good morning,

It's amazing how these Drs shoot us down in flames when they know so little about B12 and its many complications. If your B12 is on the lower end of the scale request if they are not going to treat your symptoms they keep a close eye on it, you do not want to sustain neurological symptoms.

I have been on lansoprazole for many years which has added to my low b12. Funny enough nothing on the leaflet on that one either ! 🤔

Sleepybunny profile image
Sleepybunny in reply toMandyq

UK articles that mention metformin and B12 deficiency

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

nhs.uk/medicines/metformin/

I found others when I searched online for "metformin B12 deficiency uk".

Mandyq profile image
Mandyq in reply toJillymo

Sorry I should have said - I had both colonoscopy and gastroscopy. Initial thoughts were that everything looked ok but they took a couple of random biopsies anyway and results of these should be back in 6-8 weeks.

I actually feel my GP has been quite thorough and dealt with everything reasonably quickly. I could make a list of all my questions and ask for another appointment to get answers but feel our local practice is under so much pressure it’s more straightforward to discuss everything with him when next set of blood tests have been done, around the end of Jan.

Jillymo profile image
Jillymo in reply toMandyq

That's good, lets wait and see what the results are. It does sound as if your Dr has taken the right steps to try and find out what is going on with you. Many dont even get to see a gastrologist. I was diagnosed with errosive gastritis and now waiting further investigation via a capsule swallow to confirm crohns disease ! You obviously have something going on to warrent the prescribing of omeprazole.

Nackapan profile image
Nackapan

I'm assuming IDA = Iron deficiency anaemia

Pernicious Anaemia is an autoimmune condition when you can't absorb or process B12.

Other absorbtion problems also can occur.

B12 injections are needed for life.

Age as less stomach acid and some medications like anti acids you are on can also impede B12 absorbtion and other nutrients.

Have you also had B12 ,folate,ferritin and vitamin D levels done?

With any deficiency it takes time to get back on track .

Regular maintenance is needed .

Your symptoms do sound familiar to me.

However could be due solely to low iron.

Do get a copy of your blood results as you may be low/ borderline for other things including B12 .

Do you eat Red meat and diary with vitamin C ? Richest sources of iron and B12.

.

My sister was healthy on a vegetarian diet for 40 years then post menopause got b12 deficient.

She needs daily b12 tablets and a multivit and it's solved and symptoms went as caught early .

Vegans need vitamin and mineral supplements to stay healthy

So a case of same diet but absorbtiin slowed with hormonal changes and age for my sister.

But if not dietary,,most need regular b12 injections for life .

I have an absorbtion issue as does my mother and one daughter .

Can run in families.

All needing regular B12 injections and supplements .

Hopefully things will improve soon for you.

Get those blood test results on paper for your own record.

Mandyq profile image
Mandyq in reply toNackapan

Thank you - as in my reply Jillymo - I had the full battery of blood tests, the GP was really thorough I felt, he reckons my B12 levels are low but not the cause of the IDA. I’m not a vegetarian and I think I have a healthy diet. I honestly think this has all been caused by the number of different prescription meds I take but that’s gut reaction and not a medically backed up view 🤣

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

For others reading this thread

IDA stands for Iron Deficiency Anaemia.

PMR stands for Polymyalgia-rheumatica

nhs.uk/conditions/polymyalg...

NICE (National Institute of Health and Care Excellence) have guidance on Iron Deficiency Anaemia.

Search for "NICE Anaemia - Iron Deficiency" to find the guideline.

NICE also have guidance on treatment/diagnosis of PMR.

There is forum on HU called Polymyalgia Rheumatica and Giant Cell Arteritis UK which might be worth posting on.

Polymyalgia Rheumatica and Giant Cell Arteritis UK have a website and helpline.

pmrgca.org.uk/

This forum is mostly used by people who have an autoimmune condition called Pernicious Anaemia which can lead to B12 deficiency. It's also used by people who have other conditions that lead to B12 deficiency.

Many on this forum also report iron deficiency, folate deficiency and Vitamin D deficiency as well as B12 deficiency. Have you got results for folate, Vitamin D and B12 and a full blood count (FBC)?

It's also quite common for people here to report thyroid problems. See Thyroid UK forum on HU.

It's possible to have severe B12 deficiency symptoms with a normal range serum B12 result.

See blog post below.

b12info.com/your-serum-b12-...

I can see from your story that you seem to have some risk factors for developing B12 deficiency eg your age, use of metformin and omeprazole and some symptoms that are often found in B12 deficiency eg fatigue/dizziness.

Risk factors for/causes of B12 deficiency

pernicious-anaemia-society....

b12info.com/causes/

b12info.com/whos-at-risk/

Has your GP tested you for coeliac disease?

NICE guidance for coeliac disease suggests testing people who have iron, B12 or folate deficiencies.

Coeliac UK website has useful info on diagnosis.

coeliac.org.uk/information-...

Symptoms of B12 deficiency

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

What to do next if B12 deficiency is suspected or recently diagnosed.

b12info.com/what-to-do-next/

NICE published a new B12 deficiency guideline in 2024.

Articles about new B12 deficiency guideline

b12info.com/first-nice-guid...

pernicious-anaemia-society....

B12 deficiency is often misdiagnosed as other conditions.

There's a lot more info about B12 deficiency I can pass on,

Just let me know in a reply if you want me to post more.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

Mandyq profile image
Mandyq in reply toSleepybunny

Thank you for the reply - I’ll need to sit down with a cup of tea to read it all and take it in

I’m already a member of the PMR site and found other sufferers to really helpful addressing both major and minor concerns. It was finding that site really helpful that led me to this group.

Gambit62 profile image
Gambit62Administrator

It may be worth talking to a pharmacist about the drugs you are on and how they might interact.

Particularly worth having a review of the omeprazole if you have been on it for a while - generaly PPIs should only be used for short periods. If it was prescribed to control stomach acidity - eg you had acid reflux - then that can also be a sign of low stomach acidity (quite likely anyway at 72 ) and the PPI will be making things worse.

If you have previously had serum B12 tests and the results are showing a clear downward trend - or a drop >20% (accuracy of the test) then that would be evidence of a B12 absorption problem.

Gambit62 profile image
Gambit62Administrator in reply toGambit62

Iron deficient anaemia takes a few months to correct. New red blood cells are only made as old blood cells die (or are lost,eg through blood donation) and the average life of a red blood cell is 3 months

mountmuir27 profile image
mountmuir27

A few things to consider and ask of your doctor. Anemia can make you "appear" diabetic when you aren't via fewer red blood cells to carry glycosylated hemoglobin. Arthritis alone is known to cause hemolytic anemia. Stabilize the anemia first and to answer your question how long to recover? It depends. Iron saturation %, TIBC, ferritin, and serum iron, reticulocyte count (high?), platelets (low?), folate - were all measured? If you have BOTH microcytic and macrocytic anemia your blood labs might look normal - it's akin to a tug of war. If your iron is severely low you might need more than supplements eg infusion to recover and you'll feel better much sooner. Metformin is a very well known cause of low B12 and iron needs B12 to function properly so even slightly low B12 will hinder IDA recovery. Your high blood pressure might be related to calcium levels which corticosteroids reduce. Have you have your ionized calcium/parathyroid (PTH)/vitamin D levels checked? PTH regulates calcium which regulates blood pressure. Keep us posted ok?

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