I've had huge issues with ferritin since diagnosis in 2019 and I cannot get it to raise higher than the early 20s and the doctors are absolutely no help with trying to find the cause. My ferritin is currently 23 range 30-250 and I have been taking iron medicine and eating liver consistently for almost a year and it will not move. I'm taking 45mg elemental iron daily and even that is really taxing my digestive system and has been giving me awful messy stools since March. I can't take more because of the digestive issues but if I stop taking it I get very tired and my t3 levels drop.
My last thyroid reuslts were ft4 was 61.4% through the range and ft3 was 75% through the range. I manadged to get my ferritin up 10 points over 6 months from 13 but its now staying at 23 since my last ferritin test 3 months ago and for the last two months I've suddenly had very light periods with unsually late cycles so it might not even be a true reflection.
I've tested negative for hpylori, sibo, intrinsic factor, parietal cell antibodies, I don't have particularly heavy periods and I try to eat an iron rich diet. I have digestive problems and have to eat small meals and have issues with burping and reflux. The digestive issues are a big hypo thing for me as at diagnosis I had awful gastroparesis.
I really don't know what else to or where to look - if anyone has any sugegstions on things to look at etc I would be very grateful!
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liaratsoni
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I'm taking 45mg elemental iron daily and even that is really taxing my digestive system and has been giving me awful messy stools since March. I can't take more because of the digestive issues but if I stop taking it I get very tired and my t3 levels drop.
This could be the problem - a very common one. You probably need more iron than this to raise your levels, but your digestive problems make this impossible.
I was taking 207mg elemental iron per day, and it took me nearly two years to get my ferritin to mid-range. (My serum iron was still very low.)
If I had my time over again I would scrape together the money to pay for a private iron infusion to get the job done in a day rather than two years. Theoretically you could ask a GP to be referred to a haematologist, but I think your chances of getting a transfusion this side of doomsday are practically non-existent. It might be worth asking though.
I know some members have had iron infusions done separately but I can't remember where they went to get it done and how much it cost.
Once you get an iron infusion done you should do a full iron panel every 6 - 8 weeks to monitor how well it lasts. If your levels start to drop dramatically you may be able to maintain your level with a low(ish) dose of iron in tablet form. Once I got my own ferritin to mid-range I could maintain it with one tablet of ferrous fumarate 210mg per day about 4 or 5 days a week.
Taking vitamin C with iron helps the body to absorb the iron. It can also help to prevent constipation from the iron.
Some links you might find helpful - ignore the stuff about pregnancy in the first link.
Thank you this is a huge help! My endo did previously mention trying to get my gp to refer me for an iron infusion which i thought was a hopeless cause but if it's the only thing that will help I will have to try. Thank you again!
liaratsoni there’s also something in only taking iron supplements every other day—apparently the body actively resists taking up iron when it senses too much coming in.
I’ll see if can find the info—it’s something about hep…sumthin or other. Hepcidin maybe? Back in a bit.
I had an iron transfusion privately in July 2021 and it cost me £480.
As an experiment I didn't take any iron supplements and just kept an eye on ferritin levels since and its taken 17 months but my levels have dropped to 24% through range.
liaratsoni If you do get a transfusion, keep an eye on your ferritin periodically!
I have had iron problems. Tablets upset my stomach. I now use an iron mouth spray (from Boots) and it seems to be working fine. Easy on the stomach, easy to use. But not available on NHS.
I am using it to raise ferritin and then I'll probably use it to maintain it. Had a blood test done and my ferritin is going up so I will keep with the spray. so easy to use. and tastes nice!! I will get my ferratin checked perhaps every two or three months to monitor things. Will perhaps stop it when my ferratin is a good level.Yes, BetterYou.
Thank you for the response! I currently take 86.5mcg t4 and 10mcg t3. My recent b12 was 596 (I take one 1000mcg sublingual a week) and folate was 13 (3-20). Vitamin D hasn't been tested since January but was 112 (76-250) and i supplement 3000mcg daily of that. I have been tested for coeliac and it was negative but I strictly avoid it anyway as advised by my endo
My Ferritin dropped to 19 and serum iron was bottom range due to heavier cycles caused by my hypo state for several months. I took Thorne iron 100mg every other day for about three months. It quickly brought my ferritin up to the 50s, which is enough to keep me from having the worst symptoms. At that point I got on T3 which has lightened my cycles so I don't take the iron anymore. Hopefully the ferritin will stay put. I would suggest higher amounts and every other day. Thorne iron is amazing. I had absolutely no side effects because it's so gentle.
I've never taken ferrous fumarate iron but the Thorne iron must be well absorbed because it brought my iron up quickly. I used that Thorne iron because the reviews said it was gentle with no side effects. My dizziness was so jarring. I was waking in sweats and panic but soon after taking that iron it went away.
I have friend who had same problem. The iron supplements were making him ill. He stopped with the iron only and started taking a multivitamin and eating more meat and tuna. It improved his ferritin quite substantially.
I second suggestion that you get tested for Coeliac disease.
I had a private infusion in London - I think it was around £800 and worth every penny. They also gave me good advice on taking iron in general (some of these was available on their website too - see the Iron Clinic, Harley St). Tbh I think you’ll struggle to get an NHS infusion esp if your haemoglobin is normal.
My Ferritin is dropping again and I was advised a maintenance regime of one ferrous fumarate tab every other day for better tolerance.
Although you link thyroid and gut issues and rightly so, have you eliminated any blood loss elsewhere this can be minuscule a FIT Test can pick up what a normal stool sample doesn’t or have you had scope investigations?
Given you’re having digestive problems have you been tested for coeliac disease?
I’ve had to have a couple of Fit tests over last decade (I’m coeliac and have Hashimoto’s and pernicious anaemia) but I struggle with iron and folate and my GP very on the ball had me firstly to a dietitian on seeing low levels and supplemented to check I was getting the best from my diet, not just enough iron but taking Vit C with meals containing iron, and not blocking iron with excessive dairy consumption.
Folate can be destroyed in cooking and excessive alcohol in take as with all VitB vitamins … I have B12 injections do you know if these areas have been checked too?
Clearly if diet and supplements aren’t doing you any good and your digestive issues have been investigated your gastroenterologist or GP should be referring you for more investigations eg haematologist.
Thank you for the detailed response! I have not seen a gastroenterologist or had a scope investigation but I have been tested for coeliac and was negative but avoid gluten anyway. I hadn't heard if the FIT test but I will look it up!
I take my iron with vitamin c and I also don't eat dairy. I've also never had the b vits tested except folate which was mid range last time.
I might have to push my doctors to inestigate more - they never caught my thyroid problem I had to get myself diagnosed so they've not exactly been the most thorough so far!
Just to clarify did you have coeliac test after consuming gluten for the relevant amount of time & quantity before the test?
Guidance is on Coeliac U.K. for correct way to test… and some GPs still miss this … in my case I was never asked if ate gluten before my test or advised otherwise, but mine was ridiculously high, so irrelevant, (this was 10yrs ago) but it’s quite a common problem that many people stop eating these foods as feel better without gluten, so tests are skewed as not enough eaten to register positive outcomes.
There’s various reasons blood can be lost throughout the body due to conditions, some of those serious and some due to pharmaceutical drugs making stomach bleed, some very obvious conditions for females (I have adenomyosis and still perimenopausal at 56 endometriosis not been looked at) so it’s all about investigation and ruling out areas but once menstruation is eliminated, other areas should be looked at.
Ask why other things haven’t been looked at… look at your own personal conditions and see if anything could be causation, if dietary is all ok and been checked.
My Iron, ferritin, folate, B12 and vitamin D was done at same time as Thyroid and coeliac disease and they were deficient and positive for autoimmune conditions.
The FIT test is apparently triggered automatically if folic acid is low in coeliacs and a dietitian referral, my GP was just following instruction and then obviously as we age over 50 have one.
So I don’t know why your GP has overlooked things, but look into areas where missed and ask why.
Could be simple as need more time to build levels up, but doesn’t hurt to ask.
I agree with fiftyone that an iron mouth spray might be the answer as so many things interfere with iron absorption in the digestive system. Better Health have a spray which can be bought from H&B or various online sites.
Hi, I have the same problem. My endo thought that on T3 my absorption would improve and ferritin would rise but that didn't happen. There is though someone on this site who found that their ferritin improved (to I think mid-range) when taking Enzyme Digest (could look up the brand for you as I have some). I presume you know that spinach and apricots although rich in iron impede the body's uptake so are best avoided? May I follow you please to see what other suggestions people have?
Mine also thought mine would rise on t3 too! Thank you I will look up the enzyme digest! Yes I eat neither and am eating more meat including the liver but it doesn't seem to be helping so much now. Yes thats totally fine!
Thanks, I'll try to work out how to follow you. So your endo also thought your ferritin would rise on T3! Fingers crossed someone on here can give us the key.
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