iron levels - banging heads and brick walls!

Hi,

4 weeks ago my ferritin levels were once again 'above range' , been like this since last August despite having been told years ago my body would never store any excess iron and I'd have to take iron for life.

Today I get the results from the serum iron (that in my body, not in the stores) and (not surprisingly to me, as I've felt worse since they took me off iron) its below range, as is my serum transferrin level.

Follow-up action "no further action"

Reason for test "recommended by haematologists due to high ferritin to rule out iron overload.

Yet 'no further action'?! surely even a layman can work out if my stores are too high but my body doesn't have enough summat is wrong somewhere?

My TSH is also below range 0.34 (0.35 - 3.5) also 'no further action' I don't agree, I think I should cut down from 75m Levo to 50mg!

19 Replies

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  • I would guess you have Anaemia/Anemia of Chronic Disease (or Chronic Inflammation or Inflammatory Response - different names for the same thing). See the tables on these two links :

    irondisorders.org/Websites/...

    labtestsonline.org.uk/under...

    And for a description of this kind of anaemia, see these links :

    irondisorders.org/anemia-of...

    merckmanuals.com/home/blood...

    merckmanuals.com/profession...

    The last link is intended for doctors.

  • thanks humanbean, coming to the same conclusion myself! :) but surely my GP should be doing something .....?

  • Are you aware of any obvious inflammation? Muscle or joint problems? Gut problems? Lung problems?

  • I have 5 auto-immune issues now, have finally been referred to an Immunologist :) Coeliac (though never had any gut type problems with it) no lung probs, had fatigue/aches/lethargy/no energy for last 5 years, am also IgA deficient, low Vit D given course of meds (GP won't check level again for a year) am Hypothyroid, had Thyroid Eye Disease twice, high ESR, and repeated Shingles.

    Actually, it's not Shingles, I asked for a swab to be taken after about the 12th time, it came back as HSV type 2, GP tells me this is Shingles, even after I questioned him, shingles is Herpes Zoster, not Type 2 but still got the same 'no further action'!

  • I can't offer any specific advice on all that. I simply don't know enough. (I'm not medically trained.)

    But it seems likely to me that improving your nutrient levels to optimal will make you healthier, and if you are healthier then you would expect to have less inflammation.

    Also, getting your cortisol levels optimised would help too.

    Since you have coeliac disease I'm guessing you don't eat gluten. You might find you feel better if you gave up dairy too, but the choice is yours whether or not you try that experiment. Giving up sugar would help.

    The raised ESR you had indicates inflammation is rife in your body, but it is non-specific. If you ever had CRP measured that would indicate inflammation too, if it was raised. CRP is also non-specific.

    labtestsonline.org.uk/under...

    labtestsonline.org.uk/under...

    For both links above read the different tabs too : At a Glance, Test Sample, The Test etc...

  • thaks humanbean. yes, gave up gluten in March when biopsy results back.

    I'd struggle to give up dairy but really should work on giving up the sugar! :)

    Although I generally have low blood sugar which surprises me as I consume a lot more than I should, yet am a size 12!

    Cortisol, is that something to do with adrenals, I've had that checked/tested, all fine.

    Not sure about the CPR, will have a look back though tests.

    I emailed the surgery last night questioning the no further action, will see what they come back with on Monday.

    All I know is that since stopping the iron I've felt worse than ever, and ever wasn't exactly good to start with! Oh to put the clock back 5 years and feel fit and healthy! :)

  • Catalonia,

    Perhaps you could take a lower iron dose than that on which your ferritin was over range to maintain levels within range.

    There's no need to reduce Levotyroxine dose because TSH is mildly below range unless you feel over medicated.

  • I'm not taking any iron Clutter, stopped it 4 months ago.

  • and thanks, will stick with the 75mg then :)

  • update! GP rang this morning, explained that the excess iron (ferritin) is not because I have too much iron but because I have inflammation/infection and the body takes the iron from the body and puts it in store so it can't feed said infection/inflammation, she has put me back on 200mg ferrous sulphate a day.

    she didn't seem concerned about finding out what this inflammation/infection is, to me this is like having a fuel leak in the car and instead of finding out the cause of the leak, just keep putting in more petrol!.

    Hopefully when I get to see the Immunologist he might throw some light on it.

  • Your GP has just described Anemia of Chronic Disease to you. And you are right, you shouldn't keep on adding iron to your body when your body is desperately trying to keep it locked up tight in ferritin. Your GP is dangerous to your health.

  • OH! :( don't know what to say or do now, perhaps just wait until I see this Immunologist?

  • Probably a good idea. But I hope you don't have to wait too long.

    Your GP's suggestion to just keep adding iron to your body will probably just keep raising your ferritin, it won't raise your serum iron (much). Very high ferritin isn't healthy.

    This is what an immunologist does :https://www.prospects.ac.uk/job-profiles/healthcare-scientist-immunology

    It looks like a good immunologist could be very helpful to you since you have so many autoimmune diseases. Fingers crossed and good luck!

  • I'm being referred (only after I pushed for it, with the back up of the ME specialist who suggested it last August, she also suggested seeing Hematology but that got nowhere) ) to one in Cambridge, apparently they are good there :)

    GP sent letter 4 weeks ago so could be another 12 yet, that's if they want to see me, GP letter starts off with "this lady would like to know if you would like to see her"!!

    He mentioned some of my issues, but not all.

    we'll see.......

  • I don't know if this is relevant: Haemochromatosis

    patient.info/health/haemoch...

  • thanks Baba, interesting!

    I have exactly this"Arthritis found only in the knuckle and the first joint of the first two fingers is very suggestive of haemochromatosis."

    and also had "Early menopause may also occur in women with haemochromatosis."

    and this! " Other problems may include poor memory, feeling irritable and depression.

    " (but not the depression, although have been there twice in the past.)

  • Do you get low vitiman d as well and muscle issues? As i get on and off anemia. I can go a whole month feeling fine and them bam my levels quickly drop. Though if i take during the time when i feeling fine my levels go above normal. So as soon as i feel like my levels are dropping i have to go back on them. I also only take one a day when on them right before bed when i need them. Im also the same way with my vitiman d. Im lucky enough to have a gp who will prescribe me both when i need them. Though i have been told by rheumatologist that the reason im this way is because i have issues with my immune system and now seeing a lupus speclist in august. That might be something looking into. Lupus is also more common in people that already have another auto immune problems such as a low thyroid which i also happen to have. Though i hope your able to get to the bottom of your issues soon. ☺

  • HI Seanto,

    My Vit D was low last Nov, they (the hospital, forget which dept., poss Rheumo) prescribed a 6 week course, GP won't re-test for a year though!

    Muscle issues, yes as in, they just don't seem to have any strength, slight all over aches most days but no specific pain.

    I am also Hypothyroid, on 75mg per day, recently checked, all good.

    I have looked at Lupus as it is in the family but, I LOVE the sun, can't get enough of it :)

  • They should of checked your levels as a pre caution in case you need more vit d after you finished your treatment as I did. I know make sure i get my levels checked when I have to go for a routine blood test. Also its a bit strange that you love the sun but your levels dropped. That would suggest to me that you have some sort of absorption issues.

    also on the lupus front, my symptoms grew over time. This time last year I could go out in the sun and 9 out of 10 times have no issues. Where as this year as soon as it starts to get warm I start feeling sick. Now im not saying you might have lupus as im not a trained medical professional but don't completely ignore it just because you love the sun. As it effects people in different way.

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