Should i pester gp? How long should it take to see an improvement with iron tablets and possible side effects? Really worried about dd!

[Whyismyskinlikethis]

My 14 year old was really tired and weak so we took her to the doctor only to get a call to take her to the hospital a few hours later. She had really low iron and aome other bits it doesnt mean much to me but just in case it does to anyone her results were (the parts i remember!)

iron 2
ferrtin 13
mcv(?)62
Mhc 18
and she had low folate.
she had a celica test which was negative

she started iron tablets around 3.5 weeks ago and shes still so weak and pale. We took her for a walk around the park today and she was exhausted having to sit down and rest and seeming breathless.

she is autistic and really doesnt describe her feelings well if you ask her how she feels she says normal but she clearly doesnt feel normal.

she has also started being really sensitive to heat and sweating alot more i went in to check on her yesterday evening (she had been in bee all day) and she was drenched in sweat.

the gp did say she had reffered to the peadiatrician as there is no obvious cause for the anemia - she has a good diet and her periods are actually very light. But we havent heard anythjng and watching her walk around the park today it just feels like she should be at least seeing some type of improvement by now. I dont know if im just wasting time going back to the gp or what! I have 6 children and ive never seen any of them act like this before.

should i pester gp again monday or just wait?

It can take months to raise iron levels via tablets - and that's assuming the iron is absorbed, which given there's no obvious cause for her low iron would be a question mark for me.

You need to push and push with the GP. NHS thresholds for treating anaemia are ridiculously low because apparently low levels are within "normal" for some people. You really need to keep spelling out the impact on her health - breathlessness, low energy, dizzyness. I would be pushing for an iron infusion to address the immediate issue and further investigation (checks for blood loss) and otherwise insisting on fortnightly blood tests to monitor if the tablets are working.

Make sure she takes her iron with orange juice if possible as vitamin c helps it absorb and no dairy ,tea or eggs 2 hours before and after as it stops you absorbing the iron.
hopefully the doctor can work it out
my ferritin has been as low as 5 before and it can make you feel awful

Iron tablets are notoriously ineffective.

they don’t have much iron in them and what they have isn’t absorbed easily.

the general advice is try to take with orange juice and on an empty stomach. See this page here:

https://www.nhs.uk/medicines/ferrous-fumarate/about-ferrous-fumarate/

Have they found why she has low iron? Does she have heavy periods?

Spatone was a game changer for me. Apple flavour very drinkable.

My DD was the same and I took her for an infusion privately. They also did blood tests and found that she cannot absorb iron so no amount of spinach/steak/iron tabs would have worked. She also can’t absorb b12 or folate or vit D so has to supplement all of those too.

It was expensive but within a month she was so much better. Turns out a lot of her anxiety issues and inability to concentrate etc were all down to the lack of iron.

Ages. Has she started folate as well as one won't work without the other.

Plus she was very very low in iron so it will take at least 3 months to get anywhere close to normal.

Each iron tablet contains more iron than you can possibly absorb in a day which is what leads to the side effects.

The current practice is one tablet alternate days as this results in more absorption and less side effects. However I think it will take decades to stop seeing them prescribed 3 times a day (how we were all taught before) which leads to patients giving up as the side effects are so bad.

No she has light periods and she has a really good diet not limited at all they tested for celiac but came back negative.

Did they test her blood sugar levels too?
i’d be concerned about the sweating

Her MCV is very low. What was her Hb? Do you have an ethnicity that would make thallasaemia more likely?

No they said the folate was too low to measure so i think they said under 2? But the gp didnt really seem to want to di much without the peadiatrician seeing her.

Heamaglobin was 8. I googled and it seems like southern european is thalassemia? As far as i know we are just english and welsh for the last few generations anyway!

Hb of 8 is probably enough to get the mcv that low. Your poor daughter must be feeling exhausted. If she isn't losing a lot of blood, then she probably is v bad at absorbing iron. It does take several weeks to feel better but I would be making enquiries about an iron infusion.

Does she eat lots of food containing gluten? For the Coeliac test to be accurate, she needs to eat gluten containing food twice a day for at least 6 weeks before the blood test. Some people can be Coeliac that is only picked up on endoscopy rather than the bloods.

Could I ask more about this - where did you go and how much did the tests and infusion cost? Op, my ferritin was 6 (along with other issues - low white blood count and so on). I was getting worse to the point that I struggled to bend down and had no enthusiasm for anything. The doctor did very little other than leave a note on the system for the receptionist to tell me to "buy iron tablets". I since paid for private blood tests and have increased things a little (I was up to 26 for my ferritin a few months ago - so that took me about a year and a half). I wonder why there isn't more helpful information about this.

We went to the iron clinic in Cambridge. I think it was around £800 for the infusion and B12 injection. A colossal amount of money but the gp was zero help and she was very unwell. And honestly the difference in her was miraculous.

have they tested for Glandular Fever?

The nurse sent my DD for bloods and they came back ok. (She had palpitations and tiredness, exhausted) I pushed to see a doctor who put her on iron but requested more in depth bloods, and they came back with glandular fever. She is also autistic and often fails to get over how ill she actually feels.

Did they consider Hemolysis? I have previously had that and required an iron infusion. They would need to check her HB and reticulocytes. Hope you get it sorted.

If she hasn't been given folate tablets then she can take all the iron in the world, she still won't get better.

I'd pester the GP for folate now, not wait for the paediatrician appointment.

The light periods can be a result of low iron rather than part of the cause. The body cannot afford to loose blood when iron is so low hence light periods.

Mine didn’t start to get any better until I was taking Ferrous Sulphate 200mg tablets 3 times a day for about a month. That was only after the first Dr suggested I only needed to take 1 a day. My ferritin went from 5 to 70, still
low but I felt significantly better. Carried on 3 tablets a day for another month before reducing back down to 1 a day which is my maintenance dose.