Hi everyone, I have questions about low ferritin levels. I have Grave's disease and had RAI one year ago, so now hypothyroid. Having issues with T4/T3 conversion and found out I have low ferritin levels of 23 but serum iron is normal at 105. TIBC is on the highest end of normal (forget my exact number). My doctor, of course, thinks I'm ok, based on my "normal ranges." He had no advice on iron supplementation. However, I have pretty bad symptoms of iron deficiency, which I know are overlapping with the hypothyroidism symptoms. Should I be supplementing with iron, and if so, how much so as not to risk an overload?
Advice on low ferritin: Hi everyone, I have... - Thyroid UK
Advice on low ferritin
It has been a few years since I had low ferritin which I think was caused by heavy periods. I took Spatone and I tried to eat more red meat and I had pate a couple of times a week. Hopefully someone will be along to advise you more. I now have high ferritin ironically which I think is caused by inflammation because of having a goitre and Graves' disease.
Thanks. I looked up Spatone and it's very similar to what I've been advised to take for low ferritin. Seems people consider it to be milder than ferrous sulfate tabs. That's interesting you now have high ferritin. I wonder also if it could be from inflamation. Our bodies are amazing but so confusing, and often frustrating.
I looked up Spatone and it's very similar to what I've been advised to take for low ferritin. Seems people consider it to be milder than ferrous sulfate tabs.
When considering iron supplementation one thing people must take into account is how much iron a supplement actually contains. This information should be given somewhere on the packaging or on the Patient Information Leaflet.
One sachet of Spatone contains 5mg of iron.
One tablet of ferrous sulfate depends on the product. The UK prescribed version of ferrous sulfate (which can also be bought without prescription in pharmacies in the UK) contains 65mg of iron.
As a general rule the higher the iron level in a supplement the fewer people who tolerate it.
I'm guessing that you don't live in the UK, on the basis that the result you give for iron is so wildly different from the results we normally see, so must have been measured in different units of measurement.
low ferritin levels of 23
serum iron is normal at 105
TIBC is on the highest end of normal
You really need to ask for your actual results including the reference ranges. And do you have a result for transferrin or transferrin saturation percentage?
Iron supplementation is something to avoid without adequate information. Regular testing is essential because excess iron in the body is poisonous.
One problem with iron that is very common is poor absorption. I had below range iron and very low ferritin and got one prescription from my doctor for ferrous fumarate 210mg. This wasn't enough to make much of an improvement to my levels and so I started learning everything I could about iron testing and supplementation, and started treating myself. It took me nearly two years to get my ferritin up to mid-range because I absorb it so poorly. My serum iron always stays fairly low in range.
Someone with a healthier gut than me might find their iron and ferritin rise to satisfactory levels within 4 - 6 months. So, someone in that situation would have to stop supplementing very much earlier than I did. This is why regular testing must be done while supplementing iron - because people can poison themselves with it!
You are correct, I'm in the US, I'm not sure how you guys measure iron levels. To make it easier, my serum iron is at the very middle of normal, my transferrin is at the very highest end of normal, my red cell distribution width is high, RBC slightly high, hemoglobin is slightly high, and like we discussed, my ferritin is low.
Yeah, I'm hesitant with this iron supplementation because of the risk of poisoning. But I can tell by my numbers that I must need some supplementation. Just don't know how much, for how long. Is it safe to go a few weeks taking double the daily amount of iron? I guess I just don't know because my doctor won't give me answers, he feels things look "normal" and even when I was in the hospital with muscle spasms, severe dizziness, couldn't breathe, on and on, he claimed they were seeing nothing wrong. I know he's wrong, just don't know which way to turn on this.
Is it safe to go a few weeks taking double the daily amount of iron?
Doubling 5mg gives you 10mg of iron a day. Doubling 100mg is 200mg a day. The results of the first will be fine but probably won't raise your iron levels much, but the results of the second might be dangerous (if you could tolerate it at all).
What supplements are you currently taking for iron, how much iron does each dose contain and how many times a day do you take it?
There are loads of different kinds of iron supplements. When I supplemented to raise my iron and ferritin I was taking ferrous fumarate 210mg, one tablet three times a day. Each individual tablet contained 69mg of iron. So I was taking a total of 207mg of iron per day. The only way I could tolerate it at all was by taking the pills with food. But for many people even a single tablet of ferrous fumarate is intolerable.
You might like this document produced by helvella, one of the admins on this forum :
dropbox.com/s/4d885frbic4z8...
It is difficult to say what you could supplement with because I'm not sure what is available to you in the US. The important thing is the actual iron content of the supplements you take.
You might find this link helpful on improving iron with food :
Thank you very much. I will check out those links, anything could be helpful to me at this point. I'm supplementing with something called floradix and it is ferrous gluconate. It says two doses a day provides 20 mg of elemental iron. It sounds as though maybe I should be supplementing with more.
20 mg of iron per day is unlikely to have much impact on your iron levels.
I just went to US Amazon and found these two supplements :
1) amazon.com/Natures-Bounty-F...
The product contains 65mg iron per tablet.
2) amazon.com/Dialyvite-Ferrim...
The second link is to a product which contains 150mg of iron per tablet.
I'm not suggesting either of these products is any good or worth trying - I just picked them because they show that much higher dose iron tablets than you are taking are available without prescription in the US.
In terms of checking the iron content of ferrous fumarate this is useful :
en.wikipedia.org/wiki/Iron(...
Just a note on tolerating iron supplements. Commonly prescribed supplements in the UK are ferrous fumarate and ferrous sulfate. Some people prefer ferrous fumarate some prefer ferrous sulfate. It is a case of trial and error. Personally I couldn't tolerate the sulfate at all, and had to take ferrous fumarate. People have to experiment.
Ferrous gluconate (the UK prescribed version) has approximately half the iron content of sulfate and fumarate.
Thank you, I think I will try the ferrous fumarate. I didn't do too well on the ferrous sulfate, just bound me up and although it did raise my serum iron, I just don't know if it ever impacted my ferritin levels because at that time I didn't know the importance of testing ferritin. My doctor did not test me after being on it for a while. If the gluconate dosage I have now isn't going to have much impact on my ferritin levels, I certainly will want to switch.
If you significantly raise your intake of iron from any source, remember to test iron again in 6 - 8 weeks. This is the problem with iron - everyone absorbs it at different speeds, and people have to find out at what rate their iron, ferritin and saturation increases, the whole point being to avoid going over optimal.
rt3-adrenals.org/Iron_test_...
On this forum we usually suggest raising ferritin to approx mid-range. However, if this would push your iron over optimal it is safer to just live with below optimal ferritin than push your iron over optimal.
healthunlocked.com/thyroidu...
You should find the above link interesting.
Are you prescribed levothyroxine alone, or a T4/T3 combination?
Others who have more knowledge than myself, will respond re iron etc. p.s. if you have no thyroid gland function at all, I think a T4/T3 combination dose would be more beneficial for you.
The aim for blood tests is a TSH of 1 or lower, and Free T4 and Free T3 in the upper part of the ranges. GPs don't usually test the frees.
thyroiduk.org.uk/tuk/testin...
Hi, I have no thyroid gland function and was just a few days ago put on T4/T3 combo. Was on levo 88 mcg, now levo 50 mcg and liothyronine 5 mcg. I feel extremely hypo and not sure the 5 mcg lio per day is enough.
My goodness gracious - for one year you've only taken 50mcg of levo and 5mcg of lio.
If you've no thyroid function at all, you have my commiserations.
I am not medically qualified but your dose seems too low (unless you are very frail with a heart disease). 50mcg T4 +5mcg of lio means that the combined dose is around 75mcg of thyroid hormones!!! No wonder you feel unwell. My heart drops due to the additional suffering those who are supposed to be more knowledgeable than us can give such a low dose to someone whose body isn't producing any thyroid hormones at all for one year.
Are you under the care of an Endocrinologist? You should be but he/she would have to have a brain and I'd expect someone to be aware of how best to return good health to their patients.
I am going to add in humanbean for her comment on your thyroid hormone dose.humanbeing
Believe it or not I do see an endocrinologist and that is who prescribed my dosage. He's seems to never be concerned about how I actually feel, more concerned about TSH. You're right, he's supposed to be more knowledgeable than us and able to help us. Thank you for your concern. I know, I would not wish this on anyone.
You definitely have to read the following link and its no wonder this doctor cannot take on any more patients.
If he was in the UK there woud be a queue miles long. We did have another doctor who also treated the patients as he was trained as a student doctor. No blood tests then - only clinical symptoms and NDT. These doctors are of the 'old school' i.e. trained in symptoms alone before blood tests were introduced. Most were then pursued for not following the 'modern' method
Wow, excellent info and what a great doctor. No doubt the same would be true if he was in my area, everyone would be beating his door down. The medical industry, in some areas and ways, has become a disgrace. I feel many practitioners even forget the word "care" is a part of their profession. Thanks for this link, valuable info.
We did have a few of the 'old school' of doctors (who were trained in clinical symptoms before the introduction of blood tests) (which no doubt give Big Pharma excellent profits) and levothyroxine (instead of 'natural dessicated thyroid hormones) Results of blood tests replaced the relieving of symptoms which doctors recognised and patient given a trial of NDT.
After some years of the 'new method' rather than using clinical symptoms, some of these 'older and well-trained doctors' were pursued for not following the 'modern' method of diagnosing/treating.
Dr Barry Peatfield was one who resigned his Licence due to the pressure he was getting and so that he could still 'advise' hypo patients but couldn't prescribe, but his patients sourced their own and recovered their health.
Dr Gordon Skinner, was another who appeared before the GMC several times - each time found not to be doing anything wrong and what other doctor in this whole wide world would have 10,000 testimonials presented to GMC stating their lives were 'saved' by a particular doctor.
Since Dr Skinner died, his staff have been collating all of their Research and hope to publish their results which, they state, would shake up the whole of the medical profession. I don't know how long it would take to publish as they needed sufficient money to enable them to do so.
Lorraine Cleaver was given Dr Skinner's name and she also consulted him then began her journey to recovery.
dailyrecord.co.uk/news/real...
Re: Natural Dessicated Thyroid Hormones given since 1892 up until the BTA decided that this should be withdrawn causing immense stress/worry/illness. The fact that False Statements were made to enable this withdrawal makes one wonder. If people like Oprah Winfrey and Hilary Clinton take NDT why has it been withdrawn in the UK??????? Many hypo patients might well have recovered as NDT consists of T4, T3, T2, T1 and calcitonin.
A TSH blood test result, read in isolation, means nothing, diddly squat - zero - nada :
Graves patients are known to have unreliable TSH readings because our antibodies attack the TSH and still ' sit there ' after RAI giving false low numbers, which to the inexperienced think we are over medicated, when in fact, the truth is we are more likely to be undermedicated.
After RAI the HPA feedback loop is broken and it is essential that you are monitored and dosed on your T3 and T4 readings with most people feeling well when both hormones are in the upper quadrant.
Imagine a car with a dodgy fuel tank gauge on the dash board. The tank looks full but you know you haven't put any fuel in for a couple of weeks - so you tap the glass, and it may move, the alternative is you get out the car and try to fuel the car, and yes, as you thought, you were running on empty.
Well that's a bit like us Graves people, our TSH is not a reliable gauge of our thyroid status or hormone production as our feedback loop is broken, our TSH stuck low/suppressed whilst our thyroids are burnt out with RAI.
RAI is a quick fix but a slow burn and it can take many years to process this toxic waste through your body.
I'm with Graves post RAI 2005 and now self medicating and much improved.
That's an excellent analogy and I fully understand what you mean. From what it sounds like, I may have to start self medicating as well. This has become ridiculous.
I was in a similar situation but you must rebuild your core strength first.
So, first, please try to get an iron infusion :
Start reading up, as you need to get your ' ducks in a row " :
Why not leave a post on the Elaine Moore website for other Graves people to give you feedback of endocrinologists they recommend in your State / area. ?
Hey Renée. You sound similar to me. Graves then RAI then bleurgh within several months. Bleurgh ever since lol.
I wanted to get my iron up fast. One life and all that. Paid for iron infusion at the iron clinic in London. Expensive but ticked that off my list in half an hour!!
Took iron supplements in 2015 for two months and the highest I got it was like 36 which was so slow and little rude. After the infusion it was in the hundreds.
If you take supplements take them with orange juice 😀
Bleurgh is right lol. I do take a liquid supplement, will definitely get the vitamin c in along with it!
Just curious, how long did it take you to feel Improvement after getting the iron infusion?
I felt no improvement sadly. But I did it in order to get levels optimal.
Can’t deny it though, I was a little gutted I didn’t feel some benefit.
Hi ReneeC76
I’m not an expert on iron deficiency but recently read in a post by SeasideSusie that a high TIBC indicated a need for iron supplementation. Your ferritin level is very low at 23. If you do supplement with iron you will need to do regular blood tests to check your levels. Hopefully someone who knows more than I will come along to advise you.
Best wishes
Caroline
recently read in a post by SeasideSusie that a high TIBC indicated a need for iron supplementation.
Although that is true for most people there are people who don't "fit" the standard rules as they apply to TIBC.
A few years ago I had below range serum iron, low in range ferritin and below range TIBC. I've improved my serum iron and ferritin over the years, but my TIBC has been below range a few times and is never better than low in range.
I think it could be caused by something genetic from my mother's side of the family, because iron-deficiency with or without anaemia is very common in the females in my family, and I even have a couple of male cousins on my mother's side who have been found to be anaemic.
I have a theory (with little evidence) that TIBC could be low (when it ought to be high) with fatty liver issues.
On this link from STTM :
stopthethyroidmadness.com/l...
there is this quote I find interesting - underlining is mine :
TIBC (Total iron binding capacity): When iron is optimal as explained above, TIBC will tend to be in the low 300’s (with a range of 250 – 450) or for other ranges, a little more than 1/4th above the bottom number in the range provided. p.s. Some have a TIBC in the 200’s consistently and no matter what–Janie Bowthorpe is like that and so are others.
Notes: TIBC measures whether a protein called transferrin, produced by the liver, is enough to carry iron in the blood. Used to determine anemia or low body iron. If your result is high in the range and in the absence of chronic disease, you may be anemic. NOTE we do NOT treat the TIBC. We treat the iron and % Sat. The TIBC just gives us interesting information as explained.
I wish I knew what the units of measurement are that STTM uses for the numbers quoted. And I wish the site author would remember that her audience is international and provide conversions to the standard units that most of the world uses. That is one of the niggles I have with the site. There are usually no sources for the information given, no units of measurement, and it is rare for ranges to be given.
I've noticed that about STTM. Looking at my iron numbers, I'm going to guess they're using mcg/dl for serum iron, ng/ml for ferritin, mcg/dl for TIBC. Yes it would be nice if they would offer international units as well.
I agree with you, I do believe there are people who are not going to fit some of these standards, especially people with fatty liver or certain genetic issues. That is good to know about the TIBC, that when it's high it does typically suggest anemia, and that low maybe could suggest fatty liver. My iron numbers last November were far worse than they are now. My saturation was about 10 points lower than it is now, ferritin was 20 points lower than now.
I forgot to mention I had an endometrial ablation on January 30th of this year. Kind of slips my mind because of how horrendous the situation has been lately with the graves and so forth. Now that I'm feeling a bit more coherent, I'm thinking about this ablation and wondering if it may have triggered something, maybe it was something traumatic to my body and added to the craziness. Who knows.
It sure is a difficult thing to balance the thyroid hormones and try to optimize iron levels. A part of life now, but a bit frustrating
That is good to know about the TIBC, that when it's high it does typically suggest anemia, and that low maybe could suggest fatty liver.
Just to bring it to your attention...
I just edited my post to add the underlined bit here :
I have a theory (with little evidence) that TIBC could be low (when it ought to be high) with fatty liver issues.
Thanks humanbean that’s very interesting! So the fact that my TIBC is quite high in the range does not necessarily indicate a need for iron tablets? I am now taking two 210 mg ferrous fumarate tablets a week as a result of the following levels achieved by taking one tablet a week:
Iron - serum: 15.73 umol/L range 5.8 - 34.5)
TIBC: 63.53 umol/L (range 45 - 72)
UIBC: 47.8 umol/L (range 24.2 -70.1)
Transferrin saturation: 24.76 (range 20 - 50%)
Ferritin: 70.8 ug/L (range 13 - 150)
After taking the iron supplement twice a week for months, my ferritin level as measured earlier this month had increased to 111 ug/L. What do you think based on these results? Would you carry on taking 2 tablets a week or drop back to one again?
I had a fibroscan last year and my liver was said to be healthy if that’s relevant.
I’d be grateful for your advice.
Best wishes
Caroline
Not talking about your results, but just generally...
Without a whole set of results I wouldn't like to commit myself - and even when I do have a complete set of results the picture isn't always neat and clear, so I still might not commit myself!
If a full iron panel consists of
Serum iron
Ferritin
Transferrin saturation %
TIBC
and if only one of these suggests low iron but the others suggest iron levels are optimal or even high I would be reluctant to take iron myself. For example, I can optimise my ferritin, but in doing so my serum iron always stays low in range. I once pushed my serum iron up to optimal but in doing so my ferritin ended up over the range. I wasn't happy about that so I allowed my levels to drop again and I live with optimal ferritin and low in range serum iron.
...
Optimal results for iron can be found here :
rt3-adrenals.org/Iron_test_...
and people usually feel best with a ferritin level of approx mid-range. But insisting on mid-range ferritin if serum iron is pushed over optimal at the same time is not a good idea in my opinion.
...
In the case of your results :
Serum iron is below optimal and could be a little higher, but your result is not terribly bad.
Your ferritin is just a smidgen below optimal.
Your saturation is lower than optimal, but again it isn't terrible.
Those are the three things I pay attention to with my own results.
Given that your ferritin has risen with two iron tablets a week I would suggest reducing to one a week.
You could also try to maintain your iron intake with food. See this link :
Thank you so much for the detailed reply. I will look at the links later.
I am a vegetarian so getting enough iron from my diet can be a bit of a challenge but as you imply better to underdo supplementation rather than overdo it.
You have given me a lot to think about. I’m very grateful.
Best wishes
Caroline
Hello Renee
I too have Graves Disease and had RAI in 2005.
I became very unwell in about 2014 when I think, my thyroid finally died.
I was only ever on monotherapy with Levothyroxine and dosed and monitored on a TSH blood test reading. My TSH was always low/suppressed and I was offered anti depressants as a consolation prize, rather than run further blood tests to evaluate where my T3 and T4 were in the range.
There are details on my profile page.
With only a low ferritin of 22/23 flagged after various hospital appointments in different departments I was referred to as a conundrum by my doctor.
I started reading up about low ferritin, eventually found this site, and started on my own, back to better health.
For any thyroid hormone replacement to work effectively you need your ferritin, folate, B12 and vitamin D at optimum levels, and just ' somewhere in the range ' doesn't do it, for us.
RAI is a slow burn that is known to ' trash ' vitamins and minerals :
I'm glad to read you have the opportunity to a combo of T3/T4 but again if your vitamins and minerals are not optimal you'll not benefit as much as you might.
I found prescription iron tablets made me worse, so I supplemented myself.
There isn't a high enough level in Spatone alone, but took this as an addition to Solgar Gentle Iron and was also eating a large spoonful of chicken livers whizzed down into a pate with a dollop of mayo every morning.
I was refused an Iron Infusion though recommended this by a private endo who suggested to my NHS doctor to arrange this for me. It took me over 12 months to have a decent levels of ferritin.
I would ask for an iron infusion if I was you.
I'm now self medicating and buying full spectrum thyroid hormone replacement and getting my life back.
If you don't know of Elaine Moore, suggest you take a look. This lady has Graves and went through RAI in the late 1990's. She found no help with her symptoms, so being a medical researcher, wrote a book to help others who might be in a similar position to her.
She now runs a very well respected website in the States, for all Graves patients worldwide.
There is an open forum much like this amazing website, where you can ask questions of the members, and Elaine takes an active role. Graves is a poorly understood and badly managed autoimmune condition and would suggest you read up and take an interest in both sites so to learn a little bit more about all things Graves and hypothyroidism.
Hi, thank you so much for that information. I'm sorry you had to go through this terrible situation, and now I'm wondering if my thyroid finally died and that was what threw me into all this? I suppose that would be a possibility. I had not heard of Elaine Moore but I will look into this and find her forum. You're right, Graves is so poorly managed and no one seems to understand it fully. I will look at your profile, I am very interested in what you have gone through.
Good morning,
Just saw Shaws post to you and realised I didn't give you my bible/ books :
Apart from Elaine Moore there is another American lady who has been through the RAI treatment for Graves :
Barbara S Lougheed - Tired Thyroid - from Hyper to Hypo to Healing - breaking the TSH rule : and I think she also runs a ' blog ' under the heading ' Tired Thyroid " :
Last but by no means least is a book by Barry Durrant - Peatfield - a doctor who has hypothyroidism.
' Your Thyroid and How To Keep It Healthy ' is an easy, sometimes funny, insightful read and full of everything we need to know, as to what this major gland does and what we may now need to do to compensate for its loss.
Hi pennyannie, thank you so much. I'm looking forward to reading all this material. Have found some great info via Elaine Moore's website and will also be getting these books.
I think they are both on Amazon and they may even be ' down loadable ' though don't ask me how to do that as well.
Tired Thyroid is now a bog as well as the book which I have with my pencil comments and underlining throughout : I stole the car analogy from this book !!!
So with a bit of luck you might be able to access both today !!!
Mind you Elaine Moore's website is the most comprehensive take on all thing Graves and having access to another forum may help you get answers quick , over there. on the same side of the ' pond '.
You'll be in good hands either way, here or there, as you wish.
Here is the link for Elaine Moore's site, she helped me get diagnosed when my Doctor said my suppressed TSH of 0.002 was normal
Hi Renee,
I've had trouble getting my ferritin up - although it wasn't as low as yours, maybe 40 if I recall.
Anyway, following advice on here, I began eating chicken livers for breakfast each day, sauteed in butter with sweet potato, courgettes, mushrooms, asparagus, etc. I started adding a bit of turmeric, as we all know that's good for inflammation, and within 3-4 months I got my ferritin up to 72.
That was great...
So imagine my shock when my last test showed it had fallen down to 60!
Long story short, I did some investigating and found that turmeric blocks the absorption of iron, and in the last few months I'd been ladling the stuff on, as I love it. I'd also doubled the amount of sweet potato in my breakfast, only to find that sweet potatoes are full of oxalates... which also hinders the absorption of iron. And my nice strong cup of coffee also contained compounds that blocked iron absorption.
It's a bloody minefield, all this macronutrient stuff and what helps and hinder the uptake of what.
So, I devised a plan:
1. Cut down on the sweet potato and massively decreased the amount of turmeric with breakfast.
2. I take vitamin C with breakfast, as it increases iron absorption
3. I wait a couple of hours and have my coffee with keto brownie (loads of oxalates in that, so I keep it well away from the chicken livers)
4. I take OxBile with breakfast to increase stomach acid and absorption.
I also found out my zinc was depleted, so I've had to do some tinkering with that, too - but at least my hair has stopped falling out, so it must be working!I'm also not very tired, so I expect my ferritin is back up again - I'll know next week, hopefully.
I have wondered about chicken livers. That actually sounds good. I have eaten beef liver a couple times in the past few days but I guess I get a little bit concerned about the copper in it and so much vitamin-a. Maybe I shouldn't be concerned, they typically say people get toxic amount of a and copper from supplements rather than food. Anyway you did a nice job devising a plan for yourself, and I will remember the turmeric situation. I have taken turmeric myself.
just for information - ox bile is used to buffer stomach acid not increase it - if you don't have enough bile you will get excess acid - if you take your ox bile at the start of a meal it will hoover up any acid you have in your stomach and leave you with nothing to digest your food which will sit in your stomach not digesting. Betaine Hcl with pepsin helps provide stomach acid if you are lacking in it and ox bile is used to emulsify and help you digest your fats but it won't provide acid to digest food.
My iron was about 26 from memory. I had to take 3 x Ferrous Sulphate daily for a year or two before it got to mid range.
In the UK there is a warning not to take any iron tablet for more than 3 months. So I'd anticipated needing such a high dose for so long.
Wow, what a long time it takes to get ferritin levels up with supplements. Yes there are a lot of warnings here too about taking iron supplements for more than a few months. Definitely have to get blood tested periodically to know for sure you are not getting poisoned.
I got checked regularly. Even then it went over the scale. Fortunately, it came down fast. I'm now on a maintenance dose. One tablet two or three times a week.