Ferritin levels

Hi , I am struggling a bit here - my history is of a pituitary tumour which was removed 18 yrs ago , leaving me with no pituitary function so I take replacement doses of thyroxine, hydrocortisone, desmopressin, growth hormone and hrt. I was trundling on nicely till just before Xmas when I was diagnosed with a DVT in my calf and was put on warfarin fo 3 months. Subsequently my hrt was stopped overnight. This put all my hormone levels into a spin and I felt truly truly hideous, on top of that I had my first ever attack of cystitis ( I am 53) which seems to have possibly left me with a persistent biofilm infection/ interstitial cystitis. I have really bad pelvic pain. I seem to be struggling in every way. I have recently been allowed to try HRT patches ( they bypass the liver ) and this week I asked them to test my iron levels as a previous lot of bloods came back showing a borderline low haematocrit.

When I phoned up the Drs for the results these are what she gave me:

Ferritin 11. Normal range 14-186

Iron 9 . Normal range 11-30

There was no message to go back in, so I made myself an appointment . When I saw the Dr he just looked at me and said " what do you want to do"? I' m thinking " well youre the Dr -you tell me!" Anyway I came out with ferrous fumearate tabs210 mg 3 x daily , no insructions on retesting or what levels in the blood we are aiming for or why my levels have got so low in the first place.

From what I have read on this site iron is needed to convert t4 to t3 , so I am assuming some of my symptoms are caused by being hypo. How long do you think I will need to be taking the iron before I see a difference? Also any advice on what other bloods I should be asking for or supplements I should be taking?

Many thanks

Rachel

4 Replies

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  • I also really struggle to keep my ferritin levels up. what amazes me is that you have to ask to be tested! They don't do it if you forget to ask.

    Mine was right down to 6 - after a year of taking large doses of Ferrous Fuminate (305mg, sometimes twice a day - not near taking my thyroid meds or caffeine and with vitamin C to aid absorption) I eventually got it up to around 45 - but it was hard work and I worry about the side effects of taking so much supplement.

    It is a battle to keep it higher and tbh I don't think I have been converting any better - still attempting to get it up to 70 or 80 which is the recommended level for conversion from T4 to T3

  • I suggest as you are only allowed one retest on the NHS to wait 4 months before being retested.

    You are suppose to be retested in around 8 weeks with iron deficiency aneamia. The treatment is to raise haemoglobin levels is what the doctor told you.

    Ferritin levels themselves rise slowly and the recommended treatment is 1 times ferrous fumarate 2 times a day. You want a level of 70-80 minimum.

    GPs like yours would accept in range measurements as being fine so I suggest you should wait.

  • Ratkinson,

    Take each Ferrous Fumarate tablet with 500-1,000mg vitamin C to aid absorption and minimise constipation. It can take months/years to raise ferritin to optimal levels of 70-100. Retest in 6 months having left 2 weeks between last dose and blood draw. Take iron 4 hours away from Levothyroxine.

    __________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Here's information on non-anemia iron deficiency - patient.info/doctor/non-ana...

    If you scroll down to "Management" it will tell you how it is treated.

    You can show your GP this information as it is one of the recognised NHS sites.

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