# Finally tested ferritin!



## kgriess (Jun 30, 2010)

So, it finally sank through my thick skull after reading many messages on here and other thyroid sites that I might want to check my ferritin level. A quick recap: I have ulcerative colitis that flared last May and I'm also hypothyroid. I had a horrible time getting off the prednisone for the colitis flare and was convinced my adrenals were fatigued. A recent test proved otherwise, but I was still feeling so bad. And it was kind of off and on...not every day was horrible, but enough were. Extreme fatigue, easily tired, slight dizziness when I'd walk, tinnitus, tingling in my hands, freaking feeling in my head, especially trying to go to sleep (scary). I've been in a year of hell. Plus, I haven't felt really good in several years.

I've seen my primary doctor several times, 2 endos, my gastro...nothing. I asked about anemia, they said my iron was fine.

So, at the end of last week, I found a lab online and the ferritin test was only $29, no doctor required. I had my blood drawn on Saturday and got the results yesterday. Drum roll please...

My ferritin level is 16 (range: 13 - 150) 16!!!!!!!!!!!!!!!!

You cannot believe the weight that was lifted off my shoulders at finding this out. I've pushed with doctors and they couldn't come up with ANYTHING!

I just had another test this morning for TIBC and serum iron, so I hope to have those results tomorrow and then I'm off to the doc for (hopefully) treatment.

I'm anxious to know how much iron to take and what kind...researching it has been kind of confusing, and given my colitis, it has to be gentle, yet effective.

I am beyond excited that this is my "issue." Low iron was affecting my adrenals and my thyroid - no wonder I had such withdrawal issues. At times it felt like I was dying. I am not kidding.

So, a HUGE THANK YOU TO ANDROS and everyone else on here who helps those of us who aren't helped by our doctors. Thank goodness for the Internet and a way to be my own doctor (requestatest.com).

If anyone in a similar ferritin situation has any advice, I'd appreciate it. I don't want to take too much iron, but I do want to feel better, and soon.

I'm excited to start living my life again! HUGS!!


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## Andros (Aug 26, 2009)

kgriess said:


> So, it finally sank through my thick skull after reading many messages on here and other thyroid sites that I might want to check my ferritin level. A quick recap: I have ulcerative colitis that flared last May and I'm also hypothyroid. I had a horrible time getting off the prednisone for the colitis flare and was convinced my adrenals were fatigued. A recent test proved otherwise, but I was still feeling so bad. And it was kind of off and on...not every day was horrible, but enough were. Extreme fatigue, easily tired, slight dizziness when I'd walk, tinnitus, tingling in my hands, freaking feeling in my head, especially trying to go to sleep (scary). I've been in a year of hell. Plus, I haven't felt really good in several years.
> 
> I've seen my primary doctor several times, 2 endos, my gastro...nothing. I asked about anemia, they said my iron was fine.
> 
> ...


OMG!! That is really really low. You must tell us what you do and how you do. We are all anxious for you to feel better.

I hear through the grape vine that liquid and flavored Floridix is great for fast and better absorption.


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## Lovlkn (Dec 20, 2009)

I agree - Floridix is probably going to be easiest on your system.

I was low Ferritin like you - my issue was I would get my ferritin up and then have a period and down it went. I finally gave up on the iron supplements as my digestive system could not handle the iron and had endometrial ablation as I was done bearing children and had already had my tubes tied.

I now take a minute amount of iron - I think around 9mg daily and my ferritin is around 90-100.

The entire time - I was having total blood counts and they never told me I was anemic - not sure why the ferritin test shows that and a total blood count does not.


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## PinkLemonLady (Mar 27, 2013)

If ferritin is your iron level, then would the hemoglobin and hemacrat levels tell you the same thing? I guess I"m confused on the difference.


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## Andros (Aug 26, 2009)

PinkLemonLady said:


> If ferritin is your iron level, then would the hemoglobin and hemacrat levels tell you the same thing? I guess I"m confused on the difference.


Ferritin is a protein that stores the iron for cellular uptake. Please read..............

Ferritin (should be 50 to 100; the closer to 100,the better) 
http://www.thewayup.com/newsletters/081504.htm


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## kgriess (Jun 30, 2010)

Andros...that is a GREAT article! Thanks for sharing it. I am definitely saving it and sharing it with my girlfriends and sisters.

Still floored that with the diseases I have, and the recent flare-up of one that causes bleeding, that none of my doctors thought to do any kind of detailed testing of my iron levels. Even after I inquired about my iron! "Your iron is fine." You start to think you are crazy when more than one tells you that!

I may need some new doctors...

I'm waiting on the results of my other iron tests and meanwhile trying to eat iron-rich foods and take a supplement. Until I can talk to a doctor - hopefully one who knows what they are doing. ;-)


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## Andros (Aug 26, 2009)

kgriess said:


> Andros...that is a GREAT article! Thanks for sharing it. I am definitely saving it and sharing it with my girlfriends and sisters.
> 
> Still floored that with the diseases I have, and the recent flare-up of one that causes bleeding, that none of my doctors thought to do any kind of detailed testing of my iron levels. Even after I inquired about my iron! "Your iron is fine." You start to think you are crazy when more than one tells you that!
> 
> ...


Many docs do know what they are doing or at least used to but they have to march to the beat of the drummer which happens to be insurance companies.

Plus other problems. It's a sin. I could not imagine what it would be like to lose pride and the decision-making process in one's profession after grueling years of medical school and internship.

That said; we need to work on changing these things.


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## kgriess (Jun 30, 2010)

So, it's been awhile since I posted on this topic. I've been taking Ferrous Gluconate 324mg (2x/day) since May 1 and my ferritin was last tested September 1. It's finally moving upwards and was at 39 (I started at 16). Six weeks later, I assume it is probably higher.

Meanwhile, though, I also started Synthroid April 5th after being on Levoxyl and before that on generic. The Levoxyl shortage caused me to switch and I'm glad, because Synthroid agrees with me more than any previous T4 med has.

The problem is, I just can't seem to get my free T3 raised. I always feel good initially on any new T4 drug I try, but then after several months I feel like I get hypo symptoms back even after being raised or having my dose adjusted.

Right now, my biggest complaint is that my muscles are tight, achy and my joints are clicking. I honestly feel like I'm going to hurt myself if I have to move suddenly or twist in a certain way. In fact, I managed to pull out my lower back AGAIN last Friday. I imagine this is what life is like when you're 80. But, I'm approaching 45, not 80 and I don't want to feel like this. I can't exercise for fear of hurting something and I used to be very active years ago.

So, while I'm finally recovering from my anemia and feeling sooooo much better than I was, I'd like to get rid of this stiff, achy, clicky muscle/joint problem.

I called my doc last week and blood was drawn on 10/10/13:

I've been on 75mcg of Synthroid since June 6:
TSH: 1.07
Free T4: 1.2 (0.8 - 1.8)
Free T3: 2.3 (2.3 - 4.2)

I know my free T3 should ideally be at 75% of range, which is 3.7. Mine has NEVER been higher than 2.7 in the 3 years I've been receiving treatment and most of the time it's lower. I've got it all tracked in a spreadsheet.

So, I'm back to wondering what to do. Do I need an increase in my Synthroid? Should I ask about trying to add a little Cytomel? Or do I try a natural T3/T4 combo med - which I know will require titration all over again. I'm just not sure if T4 alone is agreeing with me.

I feel pretty good, I just want to feel 100%. Maybe I need to wait until my iron stores are at optimal level?

Sorry for my rambling and so many questions. I'd appreciate any feedback.


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## StormFinch (Nov 16, 2012)

Is the stiff, achy feeling new, and if not has it gotten better since your iron's gone up?

If you don't feel like it's related to your iron I would suggest two things. First off, have your D checked if it hasn't been. Muscle/joint problems can be attributed to low D and we are notorious for having below or low range numbers. Secondly, you can talk to your doctor and see if he or she will add a little Cytomel to your Synthroid. You definitely aren't converting properly, and that could be part or all of the reason for your muscle problems. Personally, I would try the synthetic route first, as my experience has been that finding a doctor to prescribe desiccated can be difficult, and if synthetic works then you're ahead of the game.


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## Andros (Aug 26, 2009)

kgriess said:


> So, it finally sank through my thick skull after reading many messages on here and other thyroid sites that I might want to check my ferritin level. A quick recap: I have ulcerative colitis that flared last May and I'm also hypothyroid. I had a horrible time getting off the prednisone for the colitis flare and was convinced my adrenals were fatigued. A recent test proved otherwise, but I was still feeling so bad. And it was kind of off and on...not every day was horrible, but enough were. Extreme fatigue, easily tired, slight dizziness when I'd walk, tinnitus, tingling in my hands, freaking feeling in my head, especially trying to go to sleep (scary). I've been in a year of hell. Plus, I haven't felt really good in several years.
> 
> I've seen my primary doctor several times, 2 endos, my gastro...nothing. I asked about anemia, they said my iron was fine.
> 
> ...


{{{{{{{{{{{{{{{{{{{{{kgreiss}}}}}}}}}}}}}}}}}}}}

I am sorry you have been suffering so needlessly. Did you know that low ferritin in fact impedes the efficacy of your thyroxine replacement?

Please let us know what dose the doc recommends. I am taking 28 mgs. of Fe. Just recently followed my own advice. Could not figure out why I was so tired all of a sudden!


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## kgriess (Jun 30, 2010)

My vitamin D level is good - it was painfully low a few years ago, so I always supplement it. Last checked it was over 50.

I do know that low iron impedes thyroid function. That's why I was wondering if I should wait until my ferritin is within the "optimal" range of 70 - 90 before I make a judgement call on my thyroid meds.

I wasn't feeling this achy until after I went to my last endo appointment in August. It started up again literally the week after I saw her, and it does have a tendency to come and go...so I was a bit baffled. Wasn't sure if it was other hormones at work. But, then I remembered how every time I was on too low a dosage of Synthroid or any of my other T4 meds and then got it raised, it was liked my entire body was "oiled" up and my muscles felt so much better.

Thanks for your feedback. I go see my endo on 11/15, so I guess I'll wait to discuss my options with her in person and see what she says. Luckily, she is a doctor who will prescribe NDT if I want to try it. I'm just not sure at this point. I really just want to get rid of the 80 year-old body feeling and I'd be good!


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