Low ferritin, how long til you saw improvement?

[FaithInfinity]

I’ve been having a variety of health issues in the last couple of years - chronic abdo pain finally diagnosed as endometriosis, I’ve been having headaches on and off for 18 months. Recently had a chest infection then altered sensation and pain, investigations found the latter was bulging discs at neck level. I’ve had blood tests about the headaches and they’ve come back with low ferritin levels (although I think my Hb was normal). I’ve been really tired and breathless on exertion which I’d put down to the neck problems and gaining weight but this explains a few things!

So essentially I wondered (I’m back to the GP on Friday, I’m assuming I’ll get iron supplements) anyone with similar issues, how long did it take to get you feeling better?

I had a very low feritin level about two months ago - I mainly went due to increased heart palpitations.

I'm taking 2 x 210mg per day and have noticed the breathlessness has eased quite a bit.

I'm due a repeat blood test at the end of the month to check levels again.

Good luck op - it can really make you feel rubbish.

Thanks for replying wineandsunshine. It’s difficult to know how long it’s been going on, the headaches have been going on for 18 months. GP initially said they were tension headaches (I was having a terrible time at work and working in a room with no windows!) but more recently a different GP said probably not if they’ve been going on this long, I’m much less stressed now. I am being referred to the neurologists too in case it could be raised intercranial pressure. Yes I’m retrospect I’ve been having palpitations for a while, especially after drinking. Breathlessness on exertion. Fatigue! I have some spatone at home so I started taking that in anticipation of my appointment but it’ll be interesting to see what the level actually was.

I’m glad you’re starting to feel better now.

It sounds like you have a lot of symptoms that could all link to low feritin - the Spatone is a great idea to begin with. Just check it is high enough to get your level back up again. My level was 6.

Your headaches could be linked also, but I'm glad you are being referred to get checked out (I also had similar headache problems just over a year ago and after lots of tests was diagnosed with chronic daily migraine).

PS my palpitations were awful after drinking so I've been tea total for 18 months! Yawn I know! But they were so bad it scared me!

I can't remember how low my ferritin level was two years ago but I was having dizzy spells and feeling exhausted after exertion for a while. I started taking Spatone every morning and cut down on caffeine. Within a few weeks I was definitely feeling better. A blood test a few months later showed much higher ferritin levels (I didn't make a note of exact numbers, annoyingly).

Do follow medical advice but for me the Spatone seemed to help and I avoided the constipation often associated with iron supplements. I plan to take it indefinitely.

Another change I made was to start body-identical HRT and tranexamic acid to bleed less frequently (periods were every 2-3 weeks) and less heavy. I now bleed every 28 days, lighter bleed too.

Well I saw my GP yesterday and he said although it was low (didn’t tell me the number!) my Haemoglobin is good. He wants to repeat my bloods in 4 weeks to see if my Haemoglobin drops as a result of the low ferritin. In the mean time I’m going to try and improve if through diet. He suggested OTC tablets or a multivitamin with iron but they really do upset my digestive system so he agreed sticking with the spatone is the best plan for now.

I think he felt the low ferritin wasn’t a huge cause for concern but he was prioritising the neurology referral. Woke up with yet another awful headache but it went off fairly quickly today.

Thanks for responding both of you

Good luck OP - keep us updated

I have fairly regular iron infusions. My ferritin rarely gets above 20 post infusion and is usually in single figures. By the time my Hb dropped to the level I had my first infusion my ferritin and iron were at 2.

Crikey walnut! Did they question how you were still upright?! My Hb was 144 or 14.4 in old money, pretty good!

They are better now (I have an excellent NHS nutritionist) but with that first round of infusions they were adamant they wouldn't infuse until my Hb dropped to 7 (70) now they will still let my ferritin go into single figures but will infuse when my iron stores drop. I think NHS say normal ferritin range is 30> but know people who say they're symptomatic below 50. I felt terrible. Has anyone told you to drink orange juice (vitamin c) when you take your iron? It helps absorption. I can't absorb a lot of minerals and vitamins.

So an update from me - a month of Spatone with orange juice has made no difference. Repeat bloods show a ferritin of 18. Doctor prescribed me Ferrous Sulphate which I struggled to get, most pharmacies didn’t have it. I finally got it and it’s made me really sick within an hour of taking it. Think I’ll have to contact the GP again.

Spatone was useless for me too (there is no where near enough ferritin in it). Ferrous sulphate caused agonising IBS.

I’ve had success with Ferrous Fumarate taken with a Lysine and Vitamin C tablet before bed (two hours after any food and drink). If Ferrous Fumarate also upsets your stomach try Vitabiotics Ferroglobin.

Shadylady thanks for responding. I thought the Spatone was worth a try but with it being that low and me being quite symptomatic it’s not going to cut it. If I’m able to actually keep the iron down I’m sure it will set off my IBS I am quite sensitive to drugs - no true allergies but lots of sensitivities.

I think I’ll try adjusting the times I take it and see if that helps but I’ll be back to the GP next week if it doesn’t. I’ve dished out Ferrous Fumerate as a nurse but never tried it! It looks strange! I’ll ask about that or the Vitabiotics.

I found ferrous fumarate made me constipated so I used to take this:
www.amazon.com/Solgar-Gentle-Iron-Vegetable-Capsules/dp/B00068X4IG?tag=mumsnetforu03-21

It’s obviously a much lower dose but easier on the stomach.

Could the GP offer you injections?

The dark stools have started

wineandcheese I doubt they’ll offer me injections at this point but if I continue to struggle to tolerate the meds it might be an option. I’m due to get my bloods checked next month so I’ll see what they’re doing and discuss with my GP.

I have been on the tablets for 4 weeks now. In the last week I feel I’ve turned a corner. I have more energy, I’m getting more done at home. I’m still getting weird headaches but the GP agreed to try me on triptans which are helping which suggests they’re migraines. Awaiting neurology on that.

That's good news! I'm glad your feeling on the up.
I take 25mg amitriptylene each night for migraine and they help so much!

Thanks wineandcheese. We did talk about Amitriptyline but I’ve been taking lofepramine for anxiety and you can’t take both. I’m coming off that now so it might be an option in the future.

Oh good luck if you do try

Well I was called on Friday and offered a cancellation for today with the neurologist. He went through things and said he is confident that what I’m experiencing is migraines. He asked if I was happy with my current treatment options and I said ‘Not really!’ because they’re still coming so often and I feel like I live in fear of them starting and I’m losing days to them.
I’ve been prescribed amitriptyline to start (which he said should also help with my ongoing neck pain) and then triptans if the migraines do kick in so I’m hopeful that this combined with my improving ferritin levels will be a turning point for me.

When I had a ferritin level of around 10, my GP didn’t see it as an issue so didn’t initially prescribe anything. I didn’t really feel tired with low ferritin, but I did notice my hair falling out rapidly and growing very slowly. I tried boots iron supplements (low strength) and spa tone for about 3 months.

I later went back to my GP and they prescribed ferrous fumarate. Again, I didn’t feel tired to begin with so can’t comment on how quickly I felt better etc. However it didn’t take long at all for my hair to rapidly start growing again - about 3 months after taking them in total.

Spa tone absolutely does not contain enough iron to increase your levels. Eg my ferrous fumarate provides 210mg per tablet whereas spatone provides like 14mg per sachet. Spatone is best if you want to top your already decent levels off but want more mild side effects vs tablets

That sounds positive @FaithInfinity....hopefully the amitriptylene does work for you. Did they suggest a MRI test?

mnthrowaway I’ve been on the ferrous sulphate for 4 weeks now and I feel loads better! I’m astounded at how much energy I have.

wineandsunshine he did mention about other tests and asked if I felt they were needed (I’m a nurse). We discussed and said probably not, the migraines have been like this for over 18 months, my physical exam was fine so if it was anything more serious something would have shown up by now. Also all my bloods are normal (expect the ferritin) so I’m not overly concerned. The amitriptyline made me sleep!! And I struggled to get up this morning but I’ve felt okay since I got going. Also it’s already helping my neck pain which is great!