Maintaining ferritin level

Hi I am looking for advice regarding maintaining ferritin level. I had an iron infusion in May after 3 years of iron deficiency anaemia and my ferritin has been slowly dropping I'm guessing from heavy periods? Is there any way to maintain a good ferritin level without eating liver (I don't like the taste of it)? Maybe a small amount of elemental iron?

Thanks

Pre-infusion (February 16)

FERRITIN - 11 (15 - 150)

Post-infusion (June 16)

FERRITIN - 192 (15 - 150)

August 16

FERRITIN - 143 (15 - 150)

October 16

FERRITIN - 87 (15 - 150)

November 16

FERRITIN - 94 (15 - 150)

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  • Hiya

    I have this problem too and have also had an iron infusion, but went anaemic again within six months. I've had one hell of a year of up and down iron levels (as low iron makes your periods heavy, so you lose more iron!) and as I take T3 once I dip below the safety zone I get HORRIFIC heart palps, adrenal havoc, and high BP. The last bad bout I had was in August when I was in Greece (where fortunately even pharmacists understand how crucial iron is to thyroid function) and GP was so concerned about my heart rate and BP he wanted me to go to hospital! It's the absolute bane of my life.

    I use BlueBonnet chelated iron 27mg and it's safe to take up to 200mg a day of ELEMENTAL iron. I take it with vitamin C. If I can track it down from America I also use Proferrin ES - both are easily absorbed and don't wreck your stomach. If I'm diligent I can get my iron up in six weeks.

    I'm about to see (another) functional medicine doctor to try to get to the bottom of where all this iron is going. I suspect in my case SIBO and gut absorption has something to do with it, as does changes to bone marrow production after my thyroid was removed. Despite YEARS of treatment for candida, SIBO, parasites, malabsorption etc etc etc.

    Obviously ensuring your thyroid levels are optimal helps with gut absorption and gut bacteria, so it's important to get the thyroid right, but as yet I've not found a way to get my body to maintain it's own iron homestasis.

    Not helped by putting my faith in a CFS doctor who (after bamboozling me with some convincing sounding guff about iron overload) took me off iron last November, whereupon I slid into the pit and have been digging my way out ever since. I had iron infusion in 2012 and had been diligent about maintaining my ferritin (it's not just your ferritin btw, you need your serum iron, TIBC, and your iron saturation in the right place) but one bad decision has meant I've had a year of on and off anaemia and the resultant thyroid instability that goes with it.

    Finally to mention I've had several haemotology investigations but they just look at me as if I'm from mars as iron has been taken off the UK thyroid treatment pathway (I believe it used to be on the levothyroxine insert leaflet, that doctors should check patient's iron) and as the UK ref ranges for iron are so uselessly wide (just like thyroid) it's hard to get anyone to even believe there is a problem.

    It sounds like you already fully understand the hell that is anaemia with a thyroid problem but my advice is don't wait for a doctor to help you, do it yourself :-)

    Best wishes

    Girlscout

  • Thanks to both of you; interesting information on low iron. - how it affects when hypothyroid, and might be even partly causing heavy periods. I keep taking my daily iron. My ferritin was 20 20 (13-150)

    Do you keep a gap of 4 hours between iron & your thyroid med?

  • Yes absolutely. You can take your iron one hour after your thyroid, but then wait at least four hours until you take your next thyroid dose. When I'm in a hole (as I am now) I take iron twice a day, in the morning one hour after my thyroid, and then again at bed time (second dose of thyroid is about 5pm). Normally when just maintaining, I take my iron at bedtime.

    x

  • hachiko It always seems to be the advice on here that iron is kept 4 hours away from thyroid meds and I believe that means 4 hours either side. Iron affects the absorption of thyroid and other meds and supplements.

    stopthethyroidmadness.com/f... - scroll down to

    "What should I avoid in my stomach at the same time as iron?

    Literature says to avoid calcium, coffee, tea or wine (tannins interfere with absorption to some degree), the fiber of bran, and chocolate at the same time we take iron. Also avoid mixing iron with your thyroid pills. Keep them all 2-4 hours apart from each other where possible, we’ve found."

  • Thank you. I find it a bit challenging finding "the window"; the right timing for all these "for maximum absorption, take on an empty stomach"-tablets.

    Besides thyroxine I am taking quite a variety of supplements now, including iron, so it requires some effort to be taking them all, at the right time, within the 24 hour period, daily...

  • Yes, it's a problem. I started taking my Levo in the middle of the night when I visited the loo, so that solved one problem. For iron, I'm glad that I eat liver and don't have to worry about timing of iron tablets.

  • I often take my NDT with coffee, never made any difference :-) Unfortunately for me eating iron rich foods is NO WAY near enough iron to keep my levels up.

  • "They might take their T3 or desiccated thyroid one hour before iron is taken, or several hours later…or try their best to keep them apart somehow. "

    stopthethyroidmadness.com/f...

  • Thank you. At the moment my thyroid levels are not optimal so I will need to correct this.

  • No worries. And yes that'd be a good place to start, along with keeping your iron up and where it needs to be. It's all connected I think. For me I have a major iron issue and I'm seeing a new functional med doc in a week or so, who will correlate my latest Genova ONE test with my genetic profile, as I've been chipping away at this for about 7 years now (was ill for a long time before that but didn't know) and I think for me there is some deeper issue going on as I've faithfully followed at STTM protocols etc and I'm still not right.

    I'm neg for coeliac, although that test isn't 100% reliable, and have done all the SIBO, stomach acid, vits and mins stuff and still I cannot keep my iron up. One period (once my iron is low) is enough to wreck everything ... and I sprint all month trying to catch up, only to fall off the cliff again.

    Let us know how you get on x

  • I'd also be interested to know. My Ferritin was 19 and I had an iron infusion privately, 1000mg of Monofer, a few weeks ago. I can't say I feel massively better because I've had a viral infection since which I've just recovered from. My periods are also heavy. Though this month I had severe cramps which I've never had but they weren't as heavy as usual. Again that could be down to other factors. I've not had my iron retested since but it looks like it initially made a massive improvement for you. Sorry this may not be much help. All the best to you.

  • Would you mind PM'ing me as to where you got your private IV please? Im in the iron hell hole and seriously need to fix it ...

    Thanks

  • The general advice one of my sister-in-laws received from a haematologist was to take iron supplements continuously until the menopause. Her GP is suppose to test her levels every 6 months. One time he refused to and she ended up having an iron infusion as an emergency, so now he does.

    Unfortunately the NHS is carp at investigating the underlying cause of why your iron level is dropping they just presume that if you are a woman who has periods it is due to this and ignore it.

    And even if it is very likely due to your periods to get them to investigate if there is anything that is gynaecological wrong and what to do with it can take a long time.

  • Thank you. I have PCOS as well. Might this be a factor? I receive no treatment for this. My haematologist checks ferritin level and cbc every 3 months.

  • Unfortunately they don't know loads about PCOS and added with all your other problems it is likely to be a factor. I suggest you keep your own records of your blood tests and research information yourself.

    The latter is hard to do as you have to work out whether a source is trustworthy. I do this by checking to see what qualifications the person has and where they come from, what qualifications the people who support their work have and where they come from, their links to pharmaceutical companies (they should be up front about them) and what sources they are quoting. You also need to have a least a basic grounding in statistics to see if the results are valid. (Luckily free online courses cover statistics.)

  • Agreed. Their solution to heavy periods at the age of 36 was 'we can take your womb out' ... FFS.

  • Why does that not surprise me?

  • I know, come to the conclusion that medicine doesn't give a crap about women ... or only insofar as they can make money out of us, but most of the time our unhappiness is pathologised, but that is perhaps a discussion for another forum :-)

  • Celiac disease is a common cause of iron deficiency. Suggest you have the blood test to find out if you have not already done so. Read the following: verywell.com/anemia-and-cel...

    Ann

  • Here is another article explaining the connection between celiac disease and thyroid read disease. beyondceliac.org/celiac-dis...

  • I have been anemic my whole like. As I got older, the issues got way worse. Restless Legs at night, heart palpitations, insomnia, tired but cant sleep, no energy, just feel horrible. I however have Crohn's, so I do not absorb my iron, along with my B's... so my dogs check my iron and HGB & my vitamin levels ever 4 weeks, if it starts dipping, I get a few iron IV treatments. B12 is a major playing with iron to create red blood cells, I do B12 shots - 2x a month, been taking high Vit D and that level is finally up, I take 5k mg a day. They have not checked my bone marrow yet... as I dont want them to at this point. But, I had a hysterectomy to help, but if your wanting kids this is not an option. I also have a heart valve issue, so my body has been low on oxygen for a long time, just had surgery to correct it. The theory by docs is that your just simply loosing blood somewhere, well, I am not, full scans, cant find any bleeding. So... my body does not absorb it at all and my body has been in a trauma state with my heart and Crohn's for a long time. So I have to revert to the docs staying on top of it. If you want to try a liquid iron, Floradix has been recommended to me by several natural docs. But, you have to look at your whole body, Full panel of labs of all your level and vitamins and minerals. I also started taking higher doses of magnesium, by itself, not with calcium. Your body need more than just iron to make red blood cells. Find a doc that will look at everything. I also just take iodine and selenium to help my thyroid this also goes super hypo when I dont stay on top of my labs.

  • Thank you. Other vits and mins are deficient and thyroid levels not optimal. Both things need addressing. Also have polycystic ovaries.

  • Through a private blood test I discovered my ferritin was 7 when I showed my doctor she didn't seem that bothered (because my haemaglobin is always fine) but asked if I wanted a prescription for iron tablets. Once I discovered the symptoms of low ferritin I realised I had been suffering for decades!

    After just a month of 400mg a day I felt SO much better, my headaches had gone and periods had become quite light (I used have at least 1day when I couldn't really leave the house as I had to change tampons every 45mins they were so heavy!). As soon as the tablets ran out the symptoms came back & the doctor ummed and ahhhed about whether to give me more!

    As far as I can tell supplementation seems to be the only way.

  • Raucous, odd your Doctor said your Hemoglobin was fine so was not concerned about your ferritin. We had similar, my Husband did a home blood test and found he was under range in iron, which was the answer to his breathlessness, his breathlessness went as soon as he supplemented with iron. His Doctor's reply to us was he shouldn't have had low iron because his hemoglobin was OK. ???

    You need to be your own Doctor these days.

  • You certainly do! My doctor seemed surprised when I said all the symptoms that had gone when I took the iron. They just don't seem to have the time (or the knowledge) to bother about anything that requires in depth investigation or isn't causing major illness - after all who cares if you have headaches every month and extremely heavy periods - and is usually easier to put things down to other causes.

  • Well I am glad we don't have to pay for the 'not very good services' we all seem to be getting these days because we would all be looking for a refund :) :)

  • There was an article in The Guardian a few months ago where medical schools and the GMC admitted that doctors know very little about nutrition and exercise - theguardian.com/society/201...

    Which is why if you want to find any information about nutrition and health you are left to read information and engage with dietitians (not nutritionists), research scientists and sports scientists.

  • Good ferritin is above 90. This is the level where organs that use iron can function, but when ferritin gets less, issues start. At the moment that 94 is fine. I'd just make sure to get enough iron from food. If the ferritin starts to drop regardless of good nutrition that supports iron, I'd recommend checking issues with the gut. I for example have SIBO and I had a very good, even a bit high ferritin a bit over a month ago after supplementing for over 2 months when it had been down. I had to go without any supplements for one month, and it dropped down to 34. So if iron levels don't stay normal but keep falling regardless of good nutrition, there is something "eating" the iron. SIBO for example uses iron, magnesium and calcium to build its network, but if it's advanced like mine, it causes also deficiencies of other nutrients. Also for example Crohn's Disease causes same kind of issues. So iron that doesn't stay good is a sign of something that needs checking. And if normal doctors don't find anything, functional doctors and functional nutritionists will. My doctor was useless. So as much as period can make iron drop, it doesn't do it fast. I'd check again maybe in a couple of months what the level is and then see what the situation is.

  • iron from food - what are your top pics? (pescetarian asking)

  • And even harder for a vegetarian - probably why I've had low ferritin for goodness knows how long! The hard thing is many vegetables that are supposed to contain iron are regarded by some as inadvisable for thyroid conditions because they are goitrogens.

  • Right. (by the way, not related to iron, but did you know maca being one of them... no more maca in my smoothie)

  • @hachiko.

    My two cents worth here. If you can't stand liver (like me), top of my list is red meat, second would be Brussel Sprouts and lastly Spinach. While you can get iron from veggies, absorption is best from red meat.

    Around here (Agricultural wild west area of California) there is a saying:

    "EAT BEEF! the west wasn't won on a salad!"

  • Hah!

    Spinach it is. Brussel sprouts - aren't they also those 'goitrogens'? - maybe as boiled OK, sometimes, not everyday.

    But meat; sorry no. Greetings from the east! ;)

  • Agree. Liver and red meat are the best and yes, green leafy things, especially dark green.

  • Red meat, pork and poultry,

    Seafood,

    Beans,

    Dark green leafy vegetables, such as spinach,

    Dried fruit such as raisins and apricots,

    Iron-fortified cereals,

    Peas. I personally find the best is red meat, but I understand you don't eat this. You can also keep an eye on the iron and supplement with 15-20mg per day every now and then. Supplementing iron long term is not a good idea though because it can cause liver issues.

  • iron fortified cereals sound interesting ;)

    of course I am checking the ferritin levels on a regular basis, so no prob there.

  • Thank you. I have deficiencies of other vits and mins. Thyroid levels not optimal. Diagnosed with polycystic ovaries. Where to start with getting better??

  • I'd start with the thyroid (and the vits and mins needed to get that working properly) - after being abandoned by medicine and navigating the wild west that is the internet, I now live by the maxim, 'if you hear the thunder of hooves think horses not zebras' - if you have an iron issue as well as a thyroid issue, tackle those first.

    I think there is some info on STTM about the correlation btn PCOS and Thyroid. Sometimes sex hormone derangement will settle down somewhat if the thyroid gets in balance ...

    At least then you'd know what you were left with.

    x

  • I wouldn't know exactly what other things there are. I'd personally start with fixing all the deficiencies, but it's also good to check that digestion and intestines are in order, especially if you have any tummy trouble. Thyroid would suffer from multiple different deficiencies. Iron, Bs, iodine, selenium and I'm sure some others. Stress is no good. When cortisol levels go up, thyroid levels go down. So high stress also slows down the thyroid. I have a habit of recommending a functional nutritionist as this has been super helpful for me. I would be crashing after almost no stress and in bed for 4-5 days after this. No more. I've worked with a functional nutritionist for 3 months and am a lot better. I have a SIBO treatment going, which is not that nice though when your body is quite weak.

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