Hi all, sorry if this is a bit off topic but I know there are some experts in vitamins and minerals out there.
I haven’t been diagnosed with a thyroid condition but, with the help of this lovely group, I discovered my thyroid is sluggish (TSH hovers between 2.5 & 3 and FT3 has been at the lower end of acceptable range). I have also suffered from iron and folic acid deficiency and low (but not deficient) B12 and vitamin D with plenty of B12 deficiency symptoms. Over the last 3 years, after having iron and folic acid prescribed and then stopped, I’ve been self supplementing with B12, iron, folic acid, vitamin D & K and monitoring levels using medichecks private testing. This approach seems to have improved my thyroid function as my FT3 has risen.
Also my other levels are all optimal now except iron, which I’m really confused about and wondered if anyone has any insight. For about a year I supplemented with low dose liquid spatone and after a year (Oct 18) my ferritin etc levels were as follows:
Ferritin 20 (13-150)
Transferrin saturation 42.21 (20-50)
Iron 24.61 (5.8-34.5)
Medichecks recommended upping my iron dosage as my ferritin was still low. So I started taking 1 ferrous sulphate tablet a day during the week and not at weekends.
Jan 19 my ferritin had gone up to 26 (didn’t get the other levels tested) so I continued taking just 1 x ferrous sulphate a day as ferritin is still at the lower end of acceptable, until now. I’ve just taken another test to make sure I’ve not overdone it and the results are as follows:
Ferritin 36.9 (13-150)
Transferrin saturation 50.78 (20-50)
Iron 30.54 (5.8-34.5)
Medichecks have said that my transferrin saturation level is slightly elevated and I should discuss my results with my GP. Well seeing as I can’t get an apt with my GP and they seem to think vitamin and other deficiencies are made up, I don’t see the point! I’ve stopped taking iron tablets now, but I can’t understand how I can be over the range with transferrin saturation and my ferritin is still at the lower end of acceptable. From what I’ve read ferritin needs to be somewhere over 50 for the thyroid to function properly, but that would increase my transferrin saturation and iron levels to completely unacceptable levels.
Has anyone any insight into how you could have low ferritin but high transferrin saturation as I can’t find anything online about it.
I should also say I’m slightly worried about stopping iron supplementing as I know my levels drop without it and when I was anaemic, although the anaemia was classed as mild, my ferritin was only 7, and I felt like death! I want to keep a good level so I don’t get back to that again. And sorry I hate liver, it makes me sick!
Thanks in advance!
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Julesboz
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It's the middle of the night and I need to go to bed so this is going to be a bit short on explanation.
High in range or over the range iron and transferrin saturation along with low in range ferritin is often found in people who have the MTHFR mutation (it's very common). It creates conditions in which the methylation cycle stops working. The "treatment" is getting this cycle working again.
Note that people on this forum usually suggest ferritin should be around mid-range or a little bit over. Any iron-related measures going over-optimal should be carefully avoided - excess iron is poisonous.
Possible explanations are given for high iron in the above link. Reason one doesn't apply to you because your ferritin isn't high. You are more likely to have the problem (MTHFR) mentioned in reason two. Or you could have some of the other issues mentioned on that page.
Some people find that supplementing with activated B vitamins i.e. methylcobalamin and methylfolate helps. There are other activated B vitamins which are also important. Note the following :
Oh wow, thanks! That’s very interesting.... I’ve had a quick skim read and need to read it more in depth. I wonder if it is the MTHFR mutation? My dad and my daughter both suffer from low ferritin too. We, as a family, don’t have a history of cancer or heart disease though. I’ll have a more thorough read later because I don’t want to cause myself problems by being overloaded with iron, but I don’t want to become anaemic again!
I have mid-range iron (which doctor said was not good enough). low ferritin and transferrin saturation 99% of range. Haven't retested since starting iron supplementation gain, but honestly I don't feel any different. Apparently (genetic test) I don't have the methylation problem SNP
I have a similar situation with regards to low ferritin, normal iron, normal hemoglobin and high %Sat. I have lupus (SLE), Sjogren's and Hypothyroidism. Being treated for all.
I have had low ferritin for many years. It's never been above 58 ng/dL (30 - 202).
In April 2018, I was able to raise it to 56 ng/mL (10 - 291) via supplementation of daily high doses of elemental iron. At this time my %Sat was 36. In November 2018, without explanation and while still supplementing, my number fell to 24 ng/mL (30 - 202) and my %Sat rose to 48%. I asked my GP about it and he was puzzled by this. He ordered a series of iron infusions (3 treatments over the course of 6 weeks). As expected, after the infusions my ferritin level was quite high - 329 ng/mL (30 - 202) and my %Sat was 45.
Blood tested three months later and my ferritin level had dropped to 189 ng/mL (30 - 202) and my %Sat rose to 50. I recently saw a hematologist about this and he dismissed my concerns, telling me that before the infusions I was "iron deficient w/o anemia" and that I should consult gastro re: why my ferritin is low.
I was already working with gastro (who was APPALLED at the treatment I received from Heme) and so far I've had a colonoscopy (results: normal/clear), an upper GI endoscopy (results: normal/clear) and an abdominal U/S (results: simple cysts on my liver which could explain my symptoms of 'early satiety' and always feeling 'full'). At the moment, I am undergoing a PillCam Capsule Endoscopy (just this morning I swallowed a small camera and am wearing a device that is capturing images over 8 hours as the camera makes its way through my GI system). This Wednesday I am scheduled for an abdominal CAT scan.
A full iron panel will be done again on August 28th. If my ferritin continues to drop and/or my % Sat continues to rise I will most likely have to see a different hematologist. Of course, the results of all my gastro testing will certainly come into play.
In Feb 2018, I took the Genova Diagnostics Genovations test which showed I have "Baseline normal MTHFR enzyme activity, suggesting adequate formation of methyl-THF." So, I do not have an MTHFR issue. However, the test also showed that I have "moderately reduced COMT enzyme activity, resulting in slightly impaired methylation." Is this the cause of my low ferritin? I have no idea.
I've been following an Iron Disorders group and it seems that a high %Sat could be of concern and that serum ferritin is a poor marker of actual iron stores. Until I find out what is going on with me, I am NOT supplementing with iron because I do not want to risk iron going into places it shouldn't - like my liver, heart, etc.
Sorry I do not have answers for you. Just wanted you to know you are not alone.
Thank you for your story too! Yes I’ve stopped supplementing now as I don’t want to do any damage. I’m just very wary of my ferritin dropping too much as I remember how awful I felt when it was very low! I will probably try getting an apt with my gp but don’t hold out much hope for anything useful coming out of it.
could you PM me with details of the iron disorders group - or post on the forum whichever you prefer - would be really helpful. My iron results are a mess - ferritin below bottom of range and neither GP nor endo did anything about it and I also don't want to supp with iron and risk it going to places I wouldn't want it to be going. Thanks.
The iron disorders group was of little to no help as it primarily dealt with hemochromatosis which is high ferritin/high iron/high % Sat. All my gastric tests came back normal BUT I did get a dx of functional dyspepsia. I‘m treating it with a good soil-based probiotic and things have improved greatly.
I did consult with a second hematologist who was so very kind and informative. He explained that serum tests for ferritin aren’t very good as they don’t tell you what is going on at the cellular level.
I was supposed to have been tested again by my GP at the end of April but that has been postponed due to covid pandemic. I will get tested at the end of July.
For me personally I’ve been doing much better since all my issues last year. Gastro issues are under control, energy levels are better, sleep is good. I chalk this up to being optimally medicated on Levi and T3 as well as HRT. Lupus flares on and off so there will always be that.
Thank you milkwoman. I would imagine that 2nd haematologist is absolutely right that serum tests for ferritin aren’t very good as they don’t tell you what is going on at the cellular level - and like everything [thyroid, estrogen etc] it is what is happening at the cellular level which counts. So how do you find out what is happening at the cellular level??? I don't know if you are aware of it but if you google something called the Root Cause Protocol it deals with iron and comes from the perspective that blood values can completely mask the fact that a body can in fact have too much iron and that it is building up in tissues and organs in a harmful way causing inflammation and illness, which is why I am so reluctant to supplement.
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