Feel Terrible Need Some Input Low Ferritin Levels To Blame?

[srthomas21]

Hey everyone

I was diagnosed back in June and have been Gluten Free since. I'm not your typical celiac has I do not have a colon either. I had Ulcerative Colitis and had my colon removed about 10 years ago.

It took about 8 months to get the diagnosis . All my symptoms were not the typical symptoms but were mostly neurological.

Anyway before my celiac diagnosis I had my ferritin checked in Dec. and it was 7. I felt really lousy at this point in time. I was having tightness in my chest, heart pounding, I would get tired walking up the stairs etc. I went on iron supp and got it up to 33 at which point my doc told to go off because I was now "normal" This was in march and I still did not know I had celiac disease.

So a lot of the weird symptoms I was having have resolved since going gluten free but I'm still experiencing the following:

1. Fatigue- feel tired even after 10 hours of sleep

2. anxiety

3. light sensitive- street lights and car headlights are the biggest offenders. The light rays seem to shoot right into my eyes and it fractionalizes the light rays into many light rays

4. sore calf muscles

5. headaches

I'm wondering a lot of these symptoms could be a result of low ferritin. I've done some research and optimal levels seem to be over 70. I stopped taking the iron tablets when I was at 32 and I still was on gluten at the point so I probably was not absorbing iron still.

Does anybody have any experience with this. What else could I be deficient in that would be causing the symptoms listed above?

I honestly have zero energy and these headaches really suck. My docs don't have a clue and blame everything on anxiety. I know that anxiety makes stuff worse but it isn't the root cause of whatever problem I'm having.

I am going to a integrative doc tomorrow. Maybe he will be better then the rest.

Any input would be appreciated.

Thanks

[ang1e0251]

Do you need the dr to tell you to take the iron? Can't you just take it and see if your problems resolve? You took it before with no ill affects.

[Roda]

I strongly believe that my first symptoms that reared their ugly head is definately related to my chronic low ferritin. I started out of the blue in Feb. 2006 with intense tachycardia and sob. I ended up in the ED twice with my heartrate over 180. I thought they were going to have to shock me back into a normal rhythm. Thank goodness the meds worked. I ended up seeing a cardiologist that put me on metoprolol (?sp) and it made my normally low bp to plumit more. I barely could function. Many thyroid tests later (I actually was hypo but they did not want to increase my dose because of the tachy) I had no answers. I had chronic fatigue and went to the doctor many times by that Dec. It wasn't until Dec. that my blood work (Hemoglobin and hematocrit) was low enough to indicate I had a problem with anemia. They still did not order any specific iron tests and told me to take iron supplements. I did and the H & H went up so they dismissed me. Fast forward, I found a great endocrinologist to deal with my hashimotos. She is the one who ordered all the iron tests and found that the ferritin was 6! I truely believe that it was way low when I started with the tachy. I tried more supplements without success because of the horrible acid reflux. I began researching low ferritin and hashimotos and I would get reference to celiac. The more I read the more I thought that this might be a possibility. I was afraid of what might be so I ended up waitng until Sept. 08 to ask her about it. She orded the ttg and it was positive and a month later I had an endoscopy that was positive. I still have problems with the chronic low ferritin. My level since being gluten free about a year now is still only up to 11 and that was in April. I have another pending. I have been sucessfully taking slow fe brand of iron (2 a day) without any stomach upset or constipation. So I hope it is working or I will be inquiring about iron infusions. I still get the tachy upon mild exersion (sometimes even walking up the stairs sets it off) and sob. It makes exercise very difficult, but I am better. Another thing to consider is your vitamin D. I found out in Jan of this year that I was deficient. I have been taking rx vitamin D 50,000 iu weekly. After about a month on it I felt like a whole different person. I had more energy and was not nearly as moody. It was a god send. Now I just need to fix the iron issue and I'll be on top of the world so to speak. I think that the ferritin needs to be alot higher than 33 for optimal function. I thought on another post someone said around 70. Does anyone have anything to back this up? What really grates me is that doctors think you are fine if the numbers are even at the bottom of normal range. Thank goodness my endocrinologist does not treat like this or I would be a mess with my thyroid. Good luck.

[srthomas21]

Thanks, my Ferritin was 30. I just had it checked about a week ago. I'm going to take iron pills and get it up more.

One thing I added that has helped is a good multi vitamin and a probiotic. I started taking PB8 and its the best probiotic I've tried and I've tried several. The others didn't do a thing but PB8 does wonders for me. I don't have a colon (due to surgical removal because of ulcerative colitis) and I've been on Cipro for months for a related problem so I think all my good bacteria was destroyed as well.

I don't feel as tired anymore and several symptoms persist. Especially this weird feeling in the back of my head that I can't quite put my finger on. Kind of like a weird pressure feeling. I hope that goes away.

Thanks again.

[Roda]

Thanks, my Ferritin was 30. I just had it checked about a week ago. I'm going to take iron pills and get it up more.

One thing I added that has helped is a good multi vitamin and a probiotic. I started taking PB8 and its the best probiotic I've tried and I've tried several. The others didn't do a thing but PB8 does wonders for me. I don't have a colon (due to surgical removal because of ulcerative colitis) and I've been on Cipro for months for a related problem so I think all my good bacteria was destroyed as well.

I don't feel as tired anymore and several symptoms persist. Especially this weird feeling in the back of my head that I can't quite put my finger on. Kind of like a weird pressure feeling. I hope that goes away.

Thanks again.

Yes definatly take the iron. The Slow FE brand has been working for me. I got really excited today when my doctor's office called to tell me my ferritin was up to 33! I know it is not exactly where it needs to be, but at least it's going up! Now I know the iron pills are working and I shouldn't have to inquire about infusions yeah!

[VioletBlue]

If I remember right there are different tests for iron levels. One will meausre what is circulating in the blood, and the other test will measure what is stored in the body. The body stores quite a bit of iron for later release when iron in the blood gets low. Some doctors believe it is possible to have a healthy iron count in the blood without necessarily having enough stored. So if you stop taking an iron supplement and the body hasn't stored sufficient iron you're right back where you started from. They say it's also important to take Vitamin C at the same time as Iron because it aids in iron absorption, and avoid drinking coffee or tea at the same time you take the supplements.

Thanks, my Ferritin was 30. I just had it checked about a week ago. I'm going to take iron pills and get it up more.

One thing I added that has helped is a good multi vitamin and a probiotic. I started taking PB8 and its the best probiotic I've tried and I've tried several. The others didn't do a thing but PB8 does wonders for me. I don't have a colon (due to surgical removal because of ulcerative colitis) and I've been on Cipro for months for a related problem so I think all my good bacteria was destroyed as well.

I don't feel as tired anymore and several symptoms persist. Especially this weird feeling in the back of my head that I can't quite put my finger on. Kind of like a weird pressure feeling. I hope that goes away.

Thanks again.