AIBU to feel dismissed over low ferritin symptoms in pregnancy?

[KatMansfield6]

I'm feeling so fed up and depressed. Im 38 weeks pregnant and since about 12 weeks I have had a ferritin level of about 7. My hb is fine -- 117.

I lost 1.7l of blood in my last delivery (20 months ago), followed by a really bloody miscarriage at 12 weeks. I have been breastfeeding and then pregnant again. So I absolutely know why the iron stores are so low.

Throughout this pregnancy I've had a raft of symptoms -- pica (wanting to eat ice all the time), restless legs, extraordinary fatigue, heavy limbs, night panic attacks where I wake up in a complete panic and develop really bad claustrophobia and have to go and stand outside. Every time I have looked up a symptom, it has been linked to low iron. Even NHS documents say that low ferritin levels (even without anemia) can cause precisely these symptoms.

It's taken me about 6 months to get an appointment with a registrar who could prescribe an infusion and today they rejected it. I've been on iron tablets (which made no difference after 4 months) and liquid iron (which has had a marginal impact but has given me loads of side effects including hemorrhoids).

Today the registrar obstetrician said that I was just struggling being pregnant. My symptoms are just pregnancy, and pregnancy isn't an illness he is going to treat. I don't think that a near inability to function is a normal symptom of pregnancy. Ive been pregnant before and was totally capable of walking up a flight of stairs at 15 weeks, for example.

I've been unproductive at work and taken sick days, I have been unavailable to my kids, the thought of vacuuming the house made me cry. If I walk for more than 20 mins I have to go for a nap so I cant exercise at all and am putting of weight. Im really losing the will to live -- what if I lose blood again during delivery and this just never gets fixed? My life is just not worth living, I cant do anything. I don't understand the absolute refusal to treat my symptoms (or explore what is causing them if they are so sure it's not low ferritin).

Docs are notoriously poorly educated when it comes to Fe.

Iron tablets are often hard on the GI and poorly absorbed.

You might try Spatone which is a liquid form.

I would also do beef liver - not the tastiest but very bioavailable for iron and natural. Plant sources of iron are not well absorbed.
This is your health so do what you need to do. Take your iron source with lemon or orange juice as Vit C helps absorption.

You may also try a private specialist such as a functional doctor as sadly you won’t get much support from the NHS.

The appointment today was that separate to your maternity appointments or arranged my maternity?

if separate I would present at maternity assesment and explain your symptoms. I had two infusions via Maternity assesment after they tested me and levels were low . My hospital at least had its own infusion provision in labour and delivery

I had a terrible time with my iron levels in pregnancy too, I had a lot of the same symptoms and was absolutely miserable. I begged every health professional I saw for an iron infusion, but they all just fobbed me off until one sorted it out for me. I felt so much better, I had been throwing up multiple times a day every day until I had it and then I finally stopped. They all just would act like I was making a fuss out of nothing.

It was (very reluctantly) arranged by my midwives.

I just feel so naive -- I presumed that if I had serious symptoms someone would try to treat them. Evidently not.

I have a friend who is a GP and another who is a surgeon. Both of them have just said turn up the MAC unit and refuse to leave. I just feel so vulnerable and undermined I do't know if I have the capacity to do this.

Maternity services at my hospital have been rated as inadequate and unsafe by the CQC, and are in the midst of an inquiry. So I feel really anxious about treatment anyway.

It's the attitude that you are making a fuss which I really struggle with.

I have been doing everything I can -- not drinking caffeine, taking vitamin C with my liquid iron. My ferritin levels are just not improving apart from the occasional 1 point fluctuation. I think that they have just got really low and breastfeeding and pregnancy are draining any additional iron immediately.

Hope you figure it out and turn things around.

Good luck.

This just goes to show what a postcode lottery it is. I'm so sorry they're not dealing with this appropriately for you.

My ferritin was 5 and hb was 80 something. I spoke to my consultant and said how awful I felt; that I felt exhausted (and not just pregnancy exhausted). I was referred for 3 x iron infusions in the run up to my c section.

Are you having a section or is there a risk of you having one? I would absolutely be pushing (and pushing) and pushing for them to take you seriously on the matter. Your levels are absolutely critical enough for an infusion. Do you have private healthcare by any chance? As I know my private healthcare offered infusions.

I'm sorry I can't give you any more guidance in how to get them to sit up and listen, other than to really fight and advocate for yourself. Its debilitating. I do hope you get it sorted x

https://threearrowsnutra.com/en-uk/products/ironrepair?srsltid=AfmBOooUd8Jmt9xArzfcg_HWZiPREA26ONOs2EJA-q-B8iDxmJiHrjnr

Try these - not sure if they are pregnancy safe but can't be any worse than normal iron pills

Have you improved your diet too - lots of steak, spinach, liver etc etc

I remember crying at the doctors as they wouldn't help me with low b12 symptoms when I was pregnant with my first - they wouldn't even consider what else could be causing the issues as I felt so bad - had similar issues in second pregnancy and got diagnosed with pernicious anemia, totally different experiences

Im having a planned C section (not risking VBAC in a hospital which has been identified as unsafe...). They are just obsessed with the fact that my HB levels are OK.

The first consultant I spoke to (on the phone)about the C section said that my ferritin levels would need to be better by the time I had the operation as otherwise recovery and breastfeeding would be really hard. When I bring this up with the midwives (5 different ones so far) or the registrar today they treat me like im lying and this conversation never happened.

Also another reason to fight on is that iron deficiency in pregnancy can be passed onto the baby and contribute to growth and neurological delays… let’s hope that the iron you have been taking is going to the baby at least.

NICE guidelines state-

• Refer pregnant women to obstetrics if there are significant symptoms and/or severe anaemia (haemoglobin less than 70 g/L), if pregnancy is at advanced gestation (over 34 weeks), or if there is failure to respond to a trial of oral iron.

you hit three of the categories for referral- symptoms, failure to respond to oral iron and over 34 weeks.

i would be raising a complaint to PALS and demanding a second opinion urgently. https://cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/

I remember reading a study a while ago about the prevalence of diagnosis of postnatal depression which was actually found to be symptoms of iron deficiency, so just something to bear in mind if you feel low afterwards. There are Private places like the iron clinic who understand iron and do infusions privately.

I hate that women are dismissed so much like this- the fact that your blood work shows you are iron deficient and symptoms should be cause enough. I could have guessed it was a man you saw. It makes me sick that women with genuine and treatable medical issues are treated like hysterical ignorant fools.

I cannot believe I’m actually saying this but do you have a DH or DP you can take to your next appointment? There is a certain species of medical professional who responds much better to a male highlighting the problem. He may also be able to support you to not leave until a resolution is found. I’d also make a formal complaint via PALS.

I had a level of 13 when not pregnant and felt awful. Pharmacist nearly had a fit when he found my GP wasn’t interested enough to advise on what supplements. I can’t imagine how rough you must be feeling while pregnant with a level that low. Really hope you get it sorted.

Thank you for the advice and sympathy. Its horrible because I begin to wonder whether I have become completely delusional. It is so hard being dismissed in the way that I have been over and over and I begin to doubt myself even though I know I am really unwell.

My DH has come to the last couple of appointments with me and, irritatingly, it was him contacting the midwives which led to the registrar appointment (in spite of the fact that I had been asking for about 5 months for the same).

I am trying to advocate for myself but they even deny that low ferritin can cause any symptoms -- the registrar said that giving me iron tablets for the low ferritin was an overreaction and he wouldn't be treating it at all. Its hard to persuade someone from that to agreeing to give you an infusion. I will look at submitting a complaint through PALS though.

I am not medical, but I believe that so long as your Hb is okay there is no current risk to the baby in utero, as you are supplying sufficient oxygen and the baby will keep taking your iron (eventually leading to your Hb dropping if you can't resupply quickly enough). A pp suggested there was a risk of neurological damage, but I don't think that's the case with your current iron levels.

Secondly, I believe that their rationale is that iron infusions do carry risk, and that the risk/benefit ratio is worth considering. Anaphylaxis is not fun. I do appreciate your symptoms are not fun either.

I'm not saying I think they're right! I think their bar is too low, and that they are too slow to act on obviously falling Hb levels in pregnancy. I've known quite a few women who have finally fallen under the 105g/l Hb threshold right at the end of pregnancy, meaning they get their infusion at 38/9 weeks, and then it takes weeks to produce the new RBCs before they start feeling better. During that time they go through childbirth and the newborn phase with their iron levels scraping along the floor. The NHS needs to act sooner, rather than holding on hoping they won't need to.

Re the possibility of blood loss at delivery, that's clearly a concern. Since you are having a section, have you asked what they will do at that point if you experience greater than expected blood loss? Do they treat the anaemia there and then?

I’m so sorry, I was really hoping you would say it was separate to Maternity! Someone said how It’s a postcode lottery and I could not agree more. My levels were taken really seriously by MAU

I do think you should go in and present all your symptoms at maternity Triage, and I also echo the person who suggested taking a partner with you to advocate for you. When is your section booked for?