To ask if anyone has ever had low ferritin levels?

[ImaHogg]

I have suffered from anaemia on/off for years due to heavy periods. Over the last 5+ years I have developed uterine polyps which I have removed but they grow back (I’m 48 and probably in peri so my hormones are probably unbalanced), unfortunately these are making my periods heavier which is probably further pushing me into anaemia.
My test came back last September with HB of 9.9 and Ferritin of 5. GP put me on ferrous fumerate but as an IBS sufferer these cause such awful issues that I’ve had to rely on Spatone which isn’t helping much.
Last week my levels came back the same, gp says she doesn’t have anything else to offer other than the ferrous fumerate and to continue to take the Spatone until I get a hysteroscopy appointment with gynae (I’ve been waiting for this since October last year to have polyps removed again and this time insertion of a Mirena coil, but it’s been put off due to Covid!).
Has anyone had low ferritin levels? What were your symptoms and how did you get your levels to normal?
My symptoms are I am cold all the time, tiredness even after a good nights sleep, tired after climbing stairs, intolerance to exercise, anxious ALL the time, sore tongue, tinnitus, vision issues and just completely knackered and weak tbh.
I feel like crap every day but I’ve been anaemic for so long that I’m not even sure what it feels like to feel ‘normal’ so not sure if my symptoms are due to the low ferritin or not!

Definitely ask for a B12 test. My doc told me the deficiency usually goes hand in hand with the ferritin one www.nhsinform.scot/illnesses-and-conditions/nutritional/vitamin-b12-or-folate-deficiency-anaemia

I couldn't tolerate ferrous sulphate but was ok with ferrous gluconate. As pp have said, it is really important to take the iron with vitamin c or orange juice and not with tea or coffee. If you are careful about this you will absorb 4 times as much iron. Eating fresh oranges helps with the constipation side effects too.

Increase your intake of iron rich foods too. You can easily google a list aimed at vegetarians and vegans.

My ferratin was 3 (perimenopausal bleeding) and I felt like death tbh.

I think you sound like you have an underactive thyroid, OP. Maybe also alongside Vit D, B12 and iron deficiencies too, but you should request a thyroid test.

Following to read later , because I'm very similar. I'm exhausted. I also can't tolerate the iron tablets. I have hypothyroidism so have to take thyroxine fir that, separate to iron.

I'm bone tired, I don't sleep well, anxiety, cold, hungry.

I also have very heavy periods.

my levels dropped to7 last year.I was offered blood transfusion-but took 200mg of FerroGradC (im inOz-not sure if u get them inUK)per day &despite the terrible constipation-which i eventually got through-my level returned to a normal range within 6months& i now take the same tablet twice a week,not twice a day🙂I had all your symptoms..the palpitations,weakness&breathlessness had convinced me id developed heart disease so after an ecg&bloods &was actually really happy to find id just be popping tablets to be cured.Mine was dietary/heavy periods.You can feel normal again

I can’t believe so many of us suffer from such an easily fixable condition because our gp’s appear to be so uneducated on the subject. If they had ever suffered they would totally understand how awful you can feel. I have just made an appointment to talk with a gp as it does look like I need to get my b12 and thyroid checked too (shame they couldn’t have suggested that 6 months ago!). Just had a look at the symptoms and I appear to have many of them

I take ferrous fumarate with orange juice and only take it every other day. It will get more iron into you than spatone. My levels were as low as yours and i.was barely functioning. They never got to the bottom.of mine (not that they tried) but I think it was likely the heavy periods I was having at the start of the perimenopause. I looked into thyroid problems at the time and your post has struck a chord with me regarding the coldness and ear issues. Would definitely ask for your thyroid levels to be checked

I'm now wondering why I didn't really have any symptoms of anaemia, as my levels were really pretty low apparently.

Imahogg yes I buy the Solgar version from Amazon, you might want to look at Jarrow B right as that contains all the bio available forms of folate and B12 which are easier for your body to access

The problem is once you get into nutritional deficiencies there is no help available from the nhs

If you have any form of malabsorption involvement then you really need to be thinking of magnesium and zinc too

I could drone on all day but if you go to a health food store please go indi and not to Holland and Barrett as they don’t always give the best advice as they need to sell their own products not necessarily the best product

Oh and the tinnitus is linked to B12 deficiency not ferritin, it’s just they tend to go hand in hand

I got my iron levels up with a portion of liver twice a week and black pudding every day.

Did they run full bloods on you @ImaHogg? I know your heavy periods are probably to blame but mine turned out to be Hepatitis C. I had numb hands and feet, that's what I went to the docs for in the first place. I'm not suggesting you have the same, just adding another possibility into the equation

My ferritin levels in pregnancy were 4! Weirdly haemoglobin levels were only just below normal and I wasn’t really having any symptoms. I had an infusion and suddenly had so much more energy. This thread has reminded me to get my levels checked again now the baby is here. I also have hypothyroidism.

Those of you mentioning infusions, was this at gp suggestion or private?

I was told I had extremely low iron and haemoglobin levels last year and was put on 3 x ferrous sulphate a day and provera to help my periods and started to feel a bit better. Now down to 1 ferrous sulphate tablet a day for maintenance but I started to feel crappy again so I’ve had a blood test this week and my Folate levels are now low and been prescribed folic acid! Is all this linked? I feel like I’m being put on tablets and fobbed off, no one seems willing to tell me anything. Does anyone else feel the same?

Definitely would recommend a glass of orange juice with your tablets though and push for b12 and thyroid to be checked, every time I’ve had a blood test they’ve checked the lot almost as standard?

I know what you mean about not knowing what feels normal OP, for a long time I just thought everyone felt knackered all the time!

My symptoms were tingling hands/arms in the night, which then started in the day too.
Struggling to talk and wear a mask.
Getting pressure in my chest when going for a walk.

Just asked someone what that was and they thought I meant ferreting 😂🤣😂

@MrsGulDukat

I'm on Ferrous Fumerate too and have IBS. I've been taking it for a few weeks now and dont get the symptoms.

You might to persist with the medication. Maybe even just take a lower dose.

I found the same, I nearly stopped taking it but its fine now. Taking it at bedtime helped me while it settled in.

I've had low ferritin for donkey's years, I take Ferrous Gluconate all the time now, it's the only iron I can tolerate. My daughter has now started being the same, although her levels are even lower than mine. I wanted better treatment for her and she was referred to a paediatrician. I pushed for a transfusion and was told they weren't done for low ferritin at all, and some children exist quite happily with low ferritin. DDs level was 4, she faints and feels exhausted. She's now permanently on Ferrous Gluconate too.

Have you been tested for coeliac? I had low ferritin and thyroid symptoms, tired all the time. Tested positive for coeliac despite no gastric issues. You say you have IBS though?

When you do settle on an iron source that works for you (another vote here for trying ferrous sulphate to see if it is any better) make sure you aim to get your levels up to between 80-100. Some GPs will tell you anything above 20 is ok, but it's really not, and many people are still symptomatic below 80. Make sure you get tested every 2-3mths
to check how it's progressing, until you're at a decent level.

I get regular infusions, transfusions and injections a d inbetween tablets. Before hospital was involved I was on tablets. Hospital involved after emergency admittance due to heavy uncontrolled bleeding. Bleeding no longer an issue but levels still drop dramatically even with treatment.

@Mumteedum

Those of you mentioning infusions, was this at gp suggestion or private?

NHS hospital infusions - accessed via haematology

Honestly, @ImaHogg, if you don’t get help then write to your surgery and complain. This is just unacceptable. They would not leave men suffering like this

HI OP, I've had low ferritin levels on and off for years without being anaemic (think they called it non anaemic iron deficient or something) . Can usually tell when it's dropped low as I start feeling overly worn out all the time and get breathless/palpitations climbing the stairs.
I don't tolerate tablets well so I take the liquid iron (it's bright orange but don't remember the name) and 2 packets of spatone daily as well and try up how much red meat / liver I eat (think dark leafy greens supposed to be good too).
Last pregnancy they couldn't get them up so I had an iron infusion. Think my low levels are partially caused by apocalyptic periods.
The thing I find odd is that I've been told before that low ferritin levels without anaemia doesn't cause any symptoms but without fail I can always tell when my levels have dropped bc I start getting the same symptoms every time, which prompts me to get checked and inevitably they've dropped again.