I’m new here because I honestly don’t know where to turn and need to hear from other people re my situation. About 5-7 years ago I had a colonoscopy/gastroscopy as they were looking for cancer etc as my iron was low. At the time after procedure I was told that my stomach lining was eating itself and there wasn’t much they could do. My gp didn’t follow up so I just kept going on my merry way. Fast forward to last year when new gp from same practice gave me blood test (I have had my thyroid removed so regular blood tests) when the result came back she was horrified as my iron was so low she couldn’t; understand how I was functioning. So she sent me for a pelvic ultrasound, colonoscopy/gastroscopy and suggested iron infusion. The dr at hospital said if I wasn’t tired there was no need to do the infusion. Yesterday I got a phone call from hospital and was told i had pernicious anaemia and I’d had it since my last colonoscopy/gastroscopy!!!! This was news to me- I’d had no symptoms whatsoever and was walking 10km a day for almost year when covid first hit. Hospital dr said she will run all blood tests again and then meet with me after that and I will need infusions for the rest of my life.
Naturally I’m confused and been trying to read up on this condition.
Anyone have advice or experiences to share I’d be greatful.
Written by
Tellingbones
To view profiles and participate in discussions please or .
Hello Pernicious anaemia relates to low b12 and iron deficiency anaemia relates it low iron. They are different things but it is possible to have both. You will need to talk to your gp when you get your results. PA will require lifelong treatment with B12 supplementation usually by injection. IDA is usually treatable with tablets periodically but may require infusions, You should look at posts by sleepy bunny and and join the pernicious anaemia society who have a wealth of info, sadly many gps are not very knowledgeable about PA and many people are under treated so try to read up as much as possible before your appointment! And don’t be afraid to question them and come back here for more support and clarity!
thanks LadyBothwell the hospital dr said i have pernicious anaemia and that I will need injections. She said it was confirmed last time (but no one told me!!!) so its been untreated for years. Plus I have had no symptoms I don’t understand how if left untreated I’d be ok and functioning as well as I have. My blood test pre the second gastro/colonoscopy the hb was 9 - guess I just wait and have the next blood test.
the body stores quite a lot of B12 in the liver and it can take years or even decades for PA to actually manifest as a B12 deficiency - which is what leads to the symptoms. Once the damage caused by PA gets severe though the symptoms start to snow ball.If you have a thyroid problem it is possible that you may have had symptoms but put them down to thyroid.
PA is an autoimmune disorder so if the thyroid removal was related to auto-immune disorders then that would be par for the course - over half of PA patients also develop thyroid problems.
The damage caused by PA can also affect absorption of other vitamins and minerals - most commonly folate and iron.
ok but apparently I had it 7 years ago and no one told me (which is annoying for starters and incompetent really). I’ve had no symptoms during that time. I have no symptoms now., but I’m starting to question everything. My thyroid was removed way before any of this came up. I guess I’m trying to learn about pa and wondering do i really need injections…and working out what I should ask drs once I have these next blood tests.
I think you should talk to the specialist about the result of the blood tests. Testing after you start injections isn't an effective way of managing PA - looking at symptoms is better. You could wait until you become symptomatic before starting injections if that suits you better - and you could try high dose oral as well.
To be honest - most GPs have little or no training in vitamin deficiencies - may be half a day in the course of their training - so knowledge levels are extremely poor
In 2014 my blood work before a hip revision showed very low hemoglobin levels as well as PA, I had just turn 60. I've been on B-12 injections and iron pills ever since, but I have to say most GP's don't know much about the condition, so it's important to read as much as you can and if you feel the need get into see a Hematologist. At precent, I myself am feeling cold all the time with a body temperature of 1 to2 degrees below normal, so I'll be seeing a Hematologist as soon as my GP can make a referral. It's important to know your body and find the appropriate care you need.
Thanks TorontoIslander- the whole medical system here (Australia) is not functioning well due to Covid. Everything takes so much longer etc. OK I will research as much as I can prior to talking to them. Thanks everyone!
I suggest you try to find out any national or regional documents for your country on treating B12 deficiency. I did find a Queensland document when I searched online.
Symptoms
"I’ve had no symptoms during that time. I have no symptoms now"
Have a look at these symptoms lists.
Some forum members find that when they start researching PA and B12 deficiency, they have more B12 deficiency symptoms than they thought.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New diagnosis, questions to ask GP
Advice please!
Advice before apt with doctor tomorrow please?!
Advice please
Battle for iron infusion
