To say this will never end

[AnemicWoman]

Unless I demand a change?

Hi all, this is probably a boring thread about Anemia. Just a heads up before I make you read my rant.

So, I've been anemic for about ten years and I am Fed. Up. I feel like I'm a naive woman being ignored medically. I could also just be very over dramatic, and I know AIBU is the place to tell me straight.

It started in my early teens. All the classic symptoms, doctors visit, blood test.
"You're anemic, do you have heavy periods?"
"No."
Do you eat healthy?"
"Yes"
"Okay make sure you eat lots of iron rich foods, here some iron tablets."

Fine. Fair enough. I took the iron tablets, 6 months later, they'd made no difference. Same blood test, same two questions. More iron tablets. Sometimes different ones, sulfate/fumarate. Same cycle for years.

Around 19, a doctor suggested they check for other things as this wasn't going away. From what I can remember they looked at sickle cell and thyroid. Maybe diabetes? But everything came back normal. More iron tablets and a brief mention of a transfusion if they didn't work.

At 20 I fell pregnant and was surprised to discover I was high risk, I had lots of extra scans and monitoring due to my "hemoglobin issues" I can honestly say this was the first time I'd ever thought anemia was something more serious than just Take iron tablets and get on with it. During pregnancy I ended up in hospital with threatened premature labour (unrelated). At one point my resting heart rate was 135 bpm. The nurses contacted the heart doctors, but before they came she reread my charts and said "oh you're anemic? Here's an iron tablet, it will calm your heart." And it did.

About nine months after DD was born I got very low, I thought I had Post natal depression and went crying to doctors. After some blood tests I was given iron and folic acid and sent on my way. Surprise surprise no difference.

I'm now early 20's. I eat healthy, my periods are normal, I exercise. But my lips have a blue tinge, my nails are purple, my resting heart rate averages at 92, I used my dad's peak flow test and apparently I have the lungs of an 80 year old. I know I need to go back to the doctors but really What the hell is the point?!? It just goes on and on.

So..
YABU: some women have Anemia, calm down and take your iron.
YANBU: this is not normal. You need investigations and an iron blood transfusion (or something)

The first question is are your periods normal, or are you just used to it and think that's normal.

Second, do you get upset stomach and could you have a food intolerance which impedes absorption.

Third, do you consume a lot of caffeine as that can impede absorption.

@PicsInRed thank you for replying. I'm pretty sure they're normal. I had 2 or 3 heavy ones when they returned after dd,. But even then they never got near flooding a pad.

I'm often nauseas and sometimes sick in the morning, but I've been told that's anxiety.

No not a lot of caffeine, one cup of tea in the morning, if I've got the time before work.

Nauseated*

If you can afford it get a private consultation with a specialist. I'd be asking questions about whether you are able to absorb the iron

Have you had b12 tested. There are two types of test for b12 I vaguely remember. Someone more medical on here might be able to help

No it's not normal. Can you afford a private consultation? there are a number of syndromes / iron deficiencies that can cause your symptoms.

Are you black ? Sickle cell could be a possibility
Do you get cold extremities? - Raynaud's

I'd push for an answer, it could also indicate a congenital heart defect

www.healthline.com/health/pernicious-anemia

YANBU. Have you been tested for celiac disease? Malabsorption of minerals (eg iron) is a key symptom as well as other abdominal symptoms (bloating, pain, excess wind).

I've always had issues with iron as well. My last blood test suggested thalassemia? Is that something that could have been mentioned?

factors known to enhance nonheme iron absorption include animal protein, copper, and vitamin C.
factors known to inhibit nonheme iron absorption include vegetable protein, phytic acid, oxalic acid, zinc, calcium, eggs, tea, and coffee.

Picsinred had great points about absorption and what is a normal period. It was hoped the Popeye cartoons may increase spinach consumption after first world war as a source of iron ,however absorption was poor.

If absorption and consumption is not an issue they need to look at how you maybe losing it.

I was always told anaemia is not a diagnosis it is a symptom. Find the cause.

You should ask for a blood test for coeliac disease. I had a friend who was anaemic for years and it disappeared after she was diagnosed with coeliac and cut out gluten.

Thank you all so far. I will look into these conditions as I'm not familiar with most of them. I won't trust Dr. Google, but maybe it will help to go back to the doctors armed with some suggestions for tests.

I was just about to suggest testing for Coeliac too. Your story sounds just like my friend ss well. She went for about 15 years before she was diagnosed.

I had to double check that I hadn’t written this and forgotten about it, OP! This is happening to me, too. I had a blood test a couple of weeks ago that also showed I had low folate and b12 - weird, as my diet isn’t low in b12 (it may be low in folate, honestly) and I take multivits.

My brother has just been diagnosed with coeliac disease, so I do wonder. I have some gastro symptoms.

My doctor is still saying I need to improve my diet. I feel quite dismissed, tbh, but I think they’re not getting their heads in a spin over it because my levels aren’t THAT low - just low enough to make me feel like crap, apparently!

You can get home tests for some of the coeliac antibodies. I’m tempted to order one. Would that be something you’d consider?

@ Firstbornunicorn
If you have any sort of gastric problems take the spray or liquid type of vitamin tablets
Gastro problems can mean that you could take vitamin tablets all day long and you won’t absorb them properly
You might as well be taking Smarties 😂
You can get B12, Vitamin D ,and Iron all in spray versions
You can also get galfur syrup which is vile but very good for low levels of iron

My mil had problems with life long anaemia. It turned out she needed b12 as this affected her anaemia. She ended up going to her gp regularly for b12 injections. They made her feel alot better.

Anyone who has studied Human Biology at school will know there are a few potential reasons for inability to absorb iron. So it won't matter how much iron you take, if you cannot absorb it, it won't benefit you. Its usually due to a few certain conditions or being low in certain nutrients. Its typical of the poor standard of state healthcare in this country (where specialists are kept at arm's length from patients and doctors are unwilling to speculate outside their own designated area) that you haven't yet been properly diagnosed for this problem.

Pernicious anaemia might be the cause. It's an auto-immune disorder which means certain cells in your stomach are destroyed by your own immune system meaning you are unable to absorb iron from your diet without the help of regular B12 injections.

This condition can be deadly - you MUST mention it to your GP asap.

You said you had hemoglobin issues when you were pregnant, did they say what it was?

I have hemoglobin e trait/disease which means my red blood cells are smaller than normal blood cells and I have mild anemia but it is important not to take iron tablets for this as it is not iron deficient anemia.

I think you need to go back to the doctor and explain that you have hemoglobin issues as this is not always picked up on normal blood tests. You need to be referred to to the sickle centre if you have one in your area. They have consultant there who specialise in rare blood disorders.

Get checked for Lupus

My chronic kidney disease causes my anaemia. Ask for a kidney function test, don’t assume they have done one, my GP threw iron tablets at me and was puzzled by my anaemia. Never ran a kidney screen and only after I got a new GP did I find out my kidneys were failing.

I could never absorb prescription iron tablets, I took Floradix liquid to get mine back to normal. The pharmacist told me the prescribed tablets are the cheapest ones & they don't work for many people. It took 3 months for my levels to return to normal, I now take fereglobin capsules to maintain which must be working because I have never had a problem since.

Hi I've been anaemic on and off since I was a child, can totally understand how frustrating it is to be fobbed off. I've been checked for sickle cell, Thalassaemia multiple times always came back negative. Finally when I was around 15-16 a saw a different doctors who looked at my platelet size, turns out my platelets are extremely small, meaning I'm not absorbing the right nutrients even when eating healthy etc. Could ask the doctors for them to check your size?