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Hi littlebunnyfoo - sorry to hear about your iron dilema, but i did the same thing as you did. In february i was told my ferretin had gone up and as it was up the highest it had ever been i thought it was fine to slacken off and only take it 3 or 4 times per week, sometimes maybe less. My next blood test showed my ferretin had dropped. It took me nearly 3 months to get back the little i had lost. It's not worth stopping the iron supplements and i have learnt my lesson now. Like FLFLOWERGIRL, i'd say i'm "married" to my iron supplements now :)

If you have had ALL those tests and they found nothing, there has to be something wrong. Nobody finds it hard to raise their iron unless something is wrong.

Do you eat meat?

Have you had your vitamin D, zinc, folate, iodine, B12 checked out?

As for the thyroid, did your doctor say it was fine or do YOU really know it's fine? I was told my thyroid results were fine by my gp and twice by and Endo. I spent 7 years thinking my thyroid was "fine", losing hair, messed up mestrual cycles which were getting heavier. All these are Hypo signs. I believed the doctors as those thyroid symptoms lists mentioned cold hands and feet and i dont have that, they also mentioned weight gain and i didn't experience that (unless you want to count 3 kg's, which happened over a number of years). There were other things on the list which i didn't have, but this illness is so varied and affects all of us in so many different ways.

If your doctor has tested your TSH, T3 and T4 you should post them either here or thyroid board might be better. In addition to those tests your doctor should check your thyroid antibodies. Nobody bothered checking my antibodies and they were sky high. I was fortunate to find the Trichologist who helped my anemia and hair loss issues and he was better versed in thyroid issues and tests than my previous gp or the Endo!!!

Have you been checked out for PCOS as i believe that can cause higher blood loss and hair issues.

I know it can be difficult coming to the board regularly and it can get you down, but on the other hand you cant afford to give up either as higher iron levels are not only healthy for our hair, but for so many areas of our body. I didn't know how important it was for the thyroid too, whether you have a thyroid condition or not. Also long term low ferretin does stuff up the thyroid system, even more reason to boost those iron levels as you dont want to end up with thyroid issues if you dont have them right now.

Take care and dont stress, an answer has to be found :)
Hi Audrey,

Thanks for your input! My folate and B12 are high. Vit. D is on the low end, but not below normal. I have no idea about iodine.

My tsh levels look pretty good. My tsh level was higher this winter 3.6 I think, but has since gone down to 1.6 (I'm not on any thyroid meds). T4 and T3 were also normal - I did see the numbers. Antibodies were negative. Maybe I have a fluctuating thyroid? or maybe a fluctuating thyroid within 2 points is normal?

Anyway, you think it is something more than just my periods making it difficult for me to raise ferritin? I can't imagine what else I could possibly be tested for! If you know of something, please let me know!
[QUOTE=littlebunnyfoo;3684119]Hi Audrey,

Thanks for your input! My folate and B12 are high. Vit. D is on the low end, but not below normal. I have no idea about iodine.

My tsh levels look pretty good. My tsh level was higher this winter 3.6 I think, but has since gone down to 1.6 (I'm not on any thyroid meds). T4 and T3 were also normal - I did see the numbers. Antibodies were negative. Maybe I have a fluctuating thyroid? or maybe a fluctuating thyroid within 2 points is normal?

Anyway, you think it is something more than just my periods making it difficult for me to raise ferritin? I can't imagine what else I could possibly be tested for! If you know of something, please let me know![/QUOTE]

I also though it was my period, because every doctor told me so. But now I have not had a period for 8 months. In Jan. after three infusions, my ferritin was 89. June it was 63 and now Aug. it was 36. I am back to my infusions again. My hematologist does not know what is causing my ferritin to drop even thou I have not had a period. He think now it could be hormones or something. Of course it it something but what. I think mine could be part hypo thyroid and my meds are not correct even thou my labs are normal. Problem is they don't like to run the Free T4 and Free T3 because of the cost.

You my want to see an gastro guy to see if there is a problem in your stomach. I had H-plyori twice and I know that can cause problems with iron absorption. I guess I should check with my gastro for another endoscopy.
littlebunnyfoo - if your TSH is rising and fluctuating that much then i'd say "something" is going on there. Mine went up, down and around for a long time. My doctor and Endo kept telling me my T3 and T4 and TSH levels were normal, BUT, when i went to see the Trichologist for my hair loss, he pointed out that my levels were NOT normal. Both my T3 and T4 were lower than they ought to be and he gave me the correct point at where i should be.

He did say that a low ferretin can mess up the thyroid, but when we finally got my ferretin up to 61 and my thyroid figures had not improved, he knew my low ferretin had to be due to whatever was going on with my thyroid. Lucky (or unlucky) for me i had the high Antibodies when he tested the thyroid antibodies so at least it was there in black and white that i had an actual problem. From one year to the next my TSH went from vitually 4.0 down to 1.01. The hard part is that when that happened to me i knew nothing about thyroids or thyroid tests. I used to believe my doctor.

My current doctor says even without any antibodies, if the TSH, T3 or T4 are just a little out they can cause either Hypo or Hyper symptoms. I think it was the British Medical Journal where a doctor stated that anybody who has their TSH rise above 2 should be medicated as being Hypo. The problem is that there are so many "schools of thought" when it comes to the thyroid and it's pot luck which doctor you get and what he/she believes.

Do you have a copy of your results for your latest T3 and T4? You should post them either here or over on the thyroid board. Depending on the 'range' which the lab uses, maybe it would be better if you posted your results on the thyroid board as there are a few ladies over there who are fantastic and have so much knowledge. A lot of the lab reports people have posted are different to mine, so i likely can't offer much help with the T3 and T4. I think different countries use different 'ranges'.

With your vitamin D, if it's at the low end of the range then that needs to get lifted. My current doctor and the Trichologist i saw both wanted my vitamin D lifted to the highest end of the range. My vitamin D is moving up quite slowly. Most vitamin D suppelemnts will say to take one capsul which i think is usually 1000IU, but my doctor has me taking 5000IU and even so it's moving up slowly. I thought taking 5 times more would make it sky rocket up, but it's not.

The funny thing is that a lot of people who have thyroid problems have difficult to raise ferretin and low vitamin D. I'd get my iodine checked out at your next blood test as iodine is important for the thyroid. Mine was low and my body doesnt seem to retain the iodine i get from foods.

I really cant suggest much more. I know there are a lot of people in your situation and doctors are telling them everything is ok when obviously it's not. I've posted a bit over on the Hair section of the board as there are a number of females over there who are losing hair but dont know why.
Sounds as though it could be genetic on your mothers side. Sometimes when some people get a thyroid problem it goes bad really fast, but for other people it's sort of like a slow decline. Kind of like the thyroid doesn't know whether it's sick or not and keeps changing its mind :D

Now i stumbled across an interesting piece of information just now over on the thyroid board where somebody was asking about hair loss. One of the posters said that their doctor had said that hair loss can be attributed to the TSH being unstable and fluctuating up and down. Once the TSH stabilises then hair returns to normal. I'm not sure in this case how much TSH would have to fluctuate for this to happen. I just thought i'd mention it as your TSH was raised at 3.6 then fluctuated to 1.6.

Other posters on the same thread did mention low ferretin levels as being linked to hair loss and once they raised their ferretin levels it helped the hair situation.

I can say now that my ferretin has been up for most of this year (plus my thyroid meds may help too) i have had the most baby hair growth that i have ever noticed since 2001. Also when i tie my hair back i feel as though i have more hair in my hair clip.
I think it's hard work getting the hair growing again and to not shed abnormally. I think hair is also one of the last things to improve. I'm happy with my improvement, but i'm not celebrating just incase it starts shedding all over again. It stopped shedding for a whole month from mid december 07 to mid january 08, then resumed shedding. I have no idea what that was all about. I did later think it could possibly be linked to the fact i raised my iodine as it was very low. That was the only change i had made. Then later i was found to be low in iodine again and tests showed that i absorb the iodine, but i dont seem to be able to retain it so now i'm on iodine drops again.

With your results i don't understand your lab results/ranges as they are different to what i've ever gotten from our labs here. I think different countries or different labs use different ranges. I do know somebody posted their results over on the thyroid board and one of the ladies, who we all feel is an expert, said the lab ranges being used by that particular lab were out of date by about 5 years. Unless FLFLOWERGIRL can decipher your results, you may want to post them on the thyroid board along with your symptoms and get some help to figure things out.

Even your antibodies results are different to mine. On mine i would get a results eg: Anti Thyroid Peroxidase 1,300 and then next to it where i should be eg: <60 u/L . On yours i'm not sure how it works. Does the <20 mean yours was below 20 and that you didn't have any antibodies?

I can see all your results are "within range", but that doesn't mean a thing. There is usually an optimum place were you ought to be and if you aren't then that can cause sideffects, even if you are just a bit out.

With your TSH, i can see you are definitely moving around. That used to happen to me. One blood test i was close to 4, then next one i was down to 1.01 and other times i'd be 2. something. You would think your doctor would look at all your TSH's and your symptoms, plus family history.

If i were you i would post your results on the thyroid board to get a few more ideas. I would also religiously keep up with the iron supplements. Are you taking a higher dosage supplement? It also helps to take 500mg of Lysine which helps increase the blood levels of ferretin.
FLFLOWERGIRL - I'm with you, i get lost in all the T4, T3 conversions :D I'm just not that scientific or mathematical. There are a few people who really know their stuff over on the thyroid board, mkgbrook and midwest1 come to mind. The problem is that so many doctors simply dismiss you as having nothing wrong with you and a lot of those people are looking for help on the thyroid board. Low iron is definitely an easier topic.

littlebunnyfoo - if you post over on the thyroid board you will notice a big difference compared to here on the anemia board. It's such a hive of activity over there, like ants :D and threads don't last long on the first page. If you start a new thread, before you know it, you are on page 2 or 3. It's much quieter here in the anemia section :)





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