Re: Re: Cautionary note about Ferritin....

[Guest guest]

Yikeess.  That's a lot of T3.  I think that would do me in.  You were able to do that with low iron/ferritan/anemia. 

Yeah once I got my HC up enough I got up to 170mcg of T3 a day. Now I'm having to back off cause I think I broke through some sort of resistance and now I " m gettin' hyper. So now i'm down to 140mcg and gonna go down every 3 days about 10mcg until I feel better.

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[Guest guest]

Yeah, but the treatment is the same.  Replace what's missing. 

well my ferritin is still 62.4 don't know about my anemia though- haven't gotten that check very recently. ignorance is always bliss....now I'm just all concerned i'm hypo pit. ugh. All I can say to myself is " seriously? " .

>

> > Yeah once I got my HC up enough I got up to 170mcg of T3 a day. Now I'm

> > having to back off cause I think I broke through some sort of resistance and

> > now I " m gettin' hyper. So now i'm down to 140mcg and gonna go down every 3

> > days about 10mcg until I feel better.

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

I know it.  Those are buggars.  I am so clueless about those but I guess even none hypoP girls have to deal with that some day.

Yeah but the sex hormones bring in a whole nother....ugh.

> > >

> > > > Yeah once I got my HC up enough I got up to 170mcg of T3 a day. Now I'm

> > > > having to back off cause I think I broke through some sort of

> > resistance and

> > > > now I " m gettin' hyper. So now i'm down to 140mcg and gonna go down

> > every 3

> > > > days about 10mcg until I feel better.

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > >

[Guest guest]

birrdyy wrote:

Yes, Sol for sure the exception. HOw much T3 are you on now? If it's

low do you think you'll still be okay once you go up on the T3? I sure

hope so.

I guess you will have seen my other reply by now, but just in case: I'm

on dessicated thyroid now. And basically not taking any HC regularly,

but I do stress dose when I feel I need it. I've had a lot of stress

lately, and did very well through it for several weeks, but it still

goes on, and is starting to take a toll. I really think that is a

normal thing to happen though. I'm holding my dose as is for now, until

things settle down, as it doesn't seem like a good idea for anyone to

mess with doses in the middle of unusal and temporary stress.

Well except for stress dosing HC a bit, I mean.

Otherwise, I am doing fairly well in several departments (not

everything) am off melatonin for the first time in many years, and

don't need an antihistamine to get to sleep either, though I still take

them as needed for dermatitis/itching. Used to be I HAD to take both

melatonin and an antihistamine to get any sleep at all, now I am

sleeping the same without either, and get sleepy appropriately without

them. In fact when I have to take a bedtime antihistamine for itching

now, I really notice it makes me groggy and draggy the next morning and

I hate that. Anyway, that all seems like progress to me. This stress is

taking a toll however...........but then stress always does if it goes

on long enough, eh?

sol

[Guest guest]

birrdyy wrote:

I think my ducks are in a row too. I have a very high B12 (1600) and

very nice folate and am also supplementing a good amount of zinc and

still I have had problems twice with low ferritan/iron and thyroid.

This is tickling my brain re something I read about copper deficiency.

Have you investigated that?

sol

[Guest guest]

birrdyy wrote:

I think my ducks are in a row too. I have a very high B12 (1600) and

very nice folate and am also supplementing a good amount of zinc and

still I have had problems twice with low ferritan/iron and thyroid.

I found what I was thinking of in my notes I have written that copper

deficiency can cause iron deficiency anemia. And copper deficiency can

be caused by low stomach acid. I'd bet that low stomach acid plays a

part in iron anemia too. I can send you the whole list of copper excess

and def symptoms I copied down if you want.

Anyway, worth investigating?

sol

[Guest guest]

Yes, actually I have.  I had RBC copper and zinc.  Although I was supplementing zinc (30mg) I had low zinc (bottom of range) and high copper (over limit).  I increase my zinc to 45 and am waiting for retesting results on zinc but copper has come down to the middle of range.  I fully anticipate zinc to be higher than bottom of range.

birrdyy wrote:

I think my ducks are in a row too.  I have a very high B12 (1600) and

very nice folate and am also supplementing a good amount of zinc and

still I have had problems twice with low ferritan/iron and thyroid.

This is tickling my brain re something I read about copper deficiency.

Have you investigated that?

sol

[Guest guest]

Thanks but for once that deficiency isn't a problem for me.  I just answered to your other post. 

birrdyy wrote:

I think my ducks are in a row too.  I have a very high B12 (1600) and

very nice folate and am also supplementing a good amount of zinc and

still I have had problems twice with low ferritan/iron and thyroid.

I found what I was thinking of in my notes I have written that copper

deficiency can cause iron deficiency anemia. And copper deficiency can

be caused by low stomach acid. I'd bet that low stomach acid plays a

part in iron anemia too. I can send you the whole list of copper excess

and def symptoms I copied down if you want.

Anyway, worth investigating?

sol

[Guest guest]

I think that panel looks pretty good.  I'd say get a CBC to see if you're anemic and then just increase the ferritan.  You generally need a minimum 50 ferritan to be able to tolerate thryoid meds.Not being able to tolerate thyroid meds is most always low cortisol or low ferritan.  You said the HC is helping so that's part of the answer.  You're probably having problem right now with that little bit of T3 because of your cortisol but when you get on higher doses of T3 with good HC support you may have problems because of ferritan.  Get that up as quickly as you can to avoid those problems.

Thanks birrdyy (sorry don't know your real name)

I will definitely be finding out about infusions.  I don't know if Im anemic although I remember my mother used to always say when I was a child that i always looked it and I was always " delicate " .  My iron panel looked like this on April 24 but Ive since discovered that my Ferritin is down to 30 at End July:

Iron 20.5 (5-30)

Tansferrin 2.6 (2-3.6)

TIBC (calculated) 58 (46-77)

Saturation 35% (10-45%)

Ferritin 52 (15-200)

I thought it was adrenals and have just started HC two days ago on recomendation of my doc.  I have to say that when I take it with low doses of T3 Im not getting jittery and heart skips/flutters problems.

> > >

> > > So basically the symptoms you can look forward to are those associated

> > with hyperthyroidism because on a blood serum level your body will

> > interepret the pooled thyroid (because it can't bind)as hyper. On a tissue

> > level, you will also remain hypoT. This is because the thyroid can't

> > contribute to usable forms of energy(ATP). Its not a fun ride. BTDT. With a

> > ferritin of 15. Get infusions:)

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[Guest guest]

This is a great discussion! However, can I ask that when you quote from

something, be it website, book, or what ever source, you give the source

of the information? This makes the information MUCH more valid and also

gives due credit to the author, which is required to meet yahoo terms of

service and is just a polite thing to do as well, so we are not

violating any one's rights here. Thanks!

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

http://groups.yahoo.com/group/HypoPets/

[Guest guest]

Louise, low ferritin can feel exatly liek low cortisol and visa versa..

But gettign releif of symtooms fromthe HC means that you indeed need HC

as well, so I would continue wiht that while you are raising your

ferritin so you will tolerate the thyroid meds better.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

http://health.groups.yahoo.com/group/RT3_T3/

http://groups.yahoo.com/group/HypoPets/

[Guest guest]

birrdyy wrote:

I think my ducks are in a row too. I have a very high B12 (1600) and

very nice folate and am also supplementing a good amount of zinc and

still I have had problems twice with low ferritan/iron and thyroid.

Hmm, been thinking about our levels, I have the opposite, B12 is good,

but could still be higher (977) but folate is 16.9 (normal >5.4) so

that looks too high to me? I've read that having either one too high

can mask deficiency in the other, don't know if that means anything for

either of us? But 1600 does seem a litle too high? And what the heck

does a lab range that says normal is > something mean anyway, can be

greater to infinity? Surely there is an upper range for

everything....................

sol

[Guest guest]

purdeaux04 wrote:

> Yes, you can have hemochromatosis and be anemic. But again, anemia and

ferritin are sometimes independent factors. However, I don't see how you can

have iron overload with a low ferritin. That defies the very definition.

I'll try to find the reference where I read it. It is entirely possible

I am confusing terms?........and I guess it also depends on what measure

is being used to determine " anemia " . If anemia is defined as low

ferritin? or if anemia is only defined/diagnosed by hemoglobin, etc?

Meantime I found this article, which is full of a wealth of info

http://www.irondisorders.org/Disorders/about.asp

(I just quoted some of it in another email)

low ferritin, high iron messages:

http://www.healthboards.com/boards/showthread.php?t=484531

http://www.medhelp.org/posts/Undiagnosed-Symptoms/Low-ferritin-levels-and-high-i\

ron-serum-Help/show/541817

http://www.netwellness.org/question.cfm/53133.htm

http://www.consumerhealth.org/articles/display.cfm?ID=19990303204921

> You can have a low ferritin and yet have very high intracellular iron

http://www.ironoverload.org/anemia.htm

http://www.ironoverload.org/facts.html

> About one-fourth of patients have iron-loading anemia (low

> hemoglobin). Treatment is the same unless the anemia is so severe

> that blood transfusions are required. Maintaining a hemoglobin of 10

> or hematocrit of 30 percent makes the patient treatable with

> bloodletting. Severely anemic patients require iron removal by an

> iron chelator, Desferal. All anemic patients benefit with B complex

> supplements, including folic acid, B12 and B6.

sol

[Guest guest]

Harper, you are VERY lucky that you found out now.  That way you can have a full long life.  Good for you at age 18 to be so proactive and insist on getting tested.  You're also lucky in a way that your test came back positive because as you know they only test for 3 genes and there are like 47 others they can't test for. 

Rainbow, I'm 18. I got my doctor to run the gene test when I saw someone from here post about iron overload - I looked at my test results, are sure enough I had a high transferrin saturation! I emailed my doctor with some references from iron overload websites and she agreed to run the gene test based off of that and I got my result about a week ago. I don't have family history either (I guess I just got unlucky with two recessive genes) so now I feel appreciative that my doctor ran the test. I'm angry that your doctors won't investigate something just because it's not apparent in your family....sigh.

Of course I'll let you know how the appointment with the specialist goes. It's just a plain ol' hematologist.

Harper

> >>>>>> >

> >>>>>> > How did they know you had iron overload disease? Were your iron

> >>>>>> levels high and ferritin low? This is how my levels came out after the last

> >>>>>> blood test. I was supplemnting a lot of iron at the time so I don't know if

> >>>>>> I can still supplement or not. I don't know if it was just from the

> >>>>>> supplements still in my system after 2 days.

> >>>>>> > My doctor said that you cannot have iron overload disease with low

> >>>>>> ferritin. Is this not true?

> >>>>>> > It is really confusing.

> >>>>>> > Liz W

> >>>>>> >

> >>>>>>

> >>>>>

> >>>>>

> >>>>

> >>>

> >>

> >

>

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[Guest guest]

Those don't look to good.  I don't know that the raisins would have such an effect.  Have you tested for hemochromotosis?  I think you need to follow up with this.  See, even when ferritan is to low for us, we need to make sure iron isn't to high.

Hi Rainbo

Here are the lab results I mentioned. I did fast but I am not sure about the foods. I didn't really think of that and it is possible I may have had raisins and things the day before the test.

TIBC 288 (250-450)

UIBC 75 LOW (150-375)

serum iron 213 HIGH (35-155)

iron sautration  74 HIGH (15-55)

ferritin 59

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[Guest guest]

this could also be an error in testing..i believe that sometimes if the blood is not handled correctly some of the red blood cells are damaged and release iron in the process..this would make the serum iron high..a redraw may show it normal..this has happened to my family on different occassions...

Hi Rainbo

Here are the lab results I mentioned. I did fast but I am not sure about the foods. I didn't really think of that and it is possible I may have had raisins and things the day before the test.

TIBC 288 (250-450)

UIBC 75 LOW (150-375)

serum iron 213 HIGH (35-155)

iron sautration 74 HIGH (15-55)

ferritin 59

------------ --------- --------- ------

[Guest guest]

I would for sure do another test.  Making a decision based on one test is not wise.  Sorry, I forget to mention that.  That's just my opinion. 

I agree with Birrdyy that this needs to be followed up on. Do you have any older iron lab results that these could be compared to? And how long ago were these latest ones taken?

~Rainbow~

29 year old Female 5'6 " 130lbs

Dx: Hashi's, AF, Wheat Sensitivity

Rx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com

[Guest guest]

Yes, absolutely yes inflammation can cause ferritan to read high when it's not.  Not sure what purdeaux04 is meaning and maybe it's just a typo because she sure seems to know her iron.

I thought inflammation raised ferritin, not lowered it. Or am I getting it mixed up?~Rainbow~

29 year old Female 5'6 " 130lbs

Dx: Hashi's, AF, Wheat Sensitivity

Rx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " purdeaux04 " wrote:

>

> I was also reading that inflammation at the time of the blood draw can falsly show a lower ferritin than there really is.....might wanna look into that.

I agree with Birrdyy that this needs to be followed up on. Do you have any older iron lab results that these could be compared to? And how long ago were these latest ones taken?

~Rainbow~

29 year old Female 5'6 " 130lbs

Dx: Hashi's, AF, Wheat Sensitivity

Rx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , birrdyy wrote:

>

> Those don't look to good. I don't know that the raisins would have such an

> effect. Have you tested for hemochromotosis? I think you need to follow up

> with this. See, even when ferritan is to low for us, we need to make sure

> iron isn't to high.

> >

> > > Hi Rainbo

> > Here are the lab results I mentioned. I did fast but I am not sure about

> > the foods. I didn't really think of that and it is possible I may have had

> > raisins and things the day before the test.

> > TIBC 288 (250-450)

> > UIBC 75 LOW (150-375)

> > serum iron 213 HIGH (35-155)

> > iron sautration 74 HIGH (15-55)

> > ferritin 59

Liz,From the links posted, it's my understanding that iron avidity only applies to people with hemochromatosis. Have you been diagnosed that disease?

I'm pretty sure that stopping iron supps two days before testing would keep it from affecting your test results. But you also have to avoid high-iron foods the day before the test, and do the test fasting first thing in the morning. Is that how you did it?

When one set of test results is confusing, it can sometimes be helpful to test again and compare results.~Rainbow~

29 year old Female 5'6 " 130lbs

Dx: Hashi's, AF, Wheat Sensitivity

Rx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmb

My Blog: http://hyporainbow.wordpress.com--- In RT3_T3 , " lizdoubleu " wrote:

>

> Iron avidity. I have never heard the term before, but I guess this is my problem as well.

> My saturation percentage was really high on my last serum test. I still wonder if I didn't stop supplementing early enough. I stopped my supplements two days before the test, so I don't know if it was the supplements messing with numbers.

> So do we supplement or not?? This is very confusing

> Liz

[Guest guest]

Okay, I see that.  I'm lost though.  Were you the one with high iron panel numbers before this one?  If it was from supplementing your ferritan would also have gone up to I would think.  How much iron were you taking a day?

Hi Birdy

I actually did find a test three months previous to the one I posted and all was normal except the ferritin at 21

So it could be a mistake or the supplementation?

Thanks!

Liz W

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[Guest guest]

Hmmmmm. Interesting.  Don't know what to say.  Did you order the tests yourself?  If not you could ask you doctor to have them redo it.  Tell them it doesn't seem right or something to that effect?Also, when did you stop taking the iron before the test?  3-5 days before.  That effects it, especially the iron panel.

Hi Birdy

Yep I was the one with the really high iron. I did get the ferritin up to 59, so it did raise a bit from 21, but of course so did everything else, hence the high iron numbers!

I was taking around 200 mg of iron a day split into a few doses. At the time I thought that was why I had the RT3 problem (still might have been the reason).

It is hard to know if I should supplement at all now.

Liz W

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[Guest guest]

Will that be soon?  Because if those results are correct then I don't think supplementing more is maybe not the best idea? I don't remember the numbers exactly but wasn't your iron above range?  Yes, do 5 days without iron.

Hi Birdy,

I actually stopped supplementing for two and a half days before the test and I am wondering if this was simply not enough time and it skewed the results. This is beginning to seem like the most likely thing, because nothing else really makes sense. This next test will be a lot more accurate because I am not supplementing a lot and I will stop 5 days before so I can see what is really going on.

Thanks!

Liz

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[Guest guest]

purdeaux04 wrote:

> I was also reading that inflammation at the time of the blood draw can falsly

show a lower ferritin than there really is.....might wanna look into that.

>

>

Can you point me to where you read that? I thought inflammation raised

ferritin temporarily.

sol

[Guest guest]

First, if you have that problem death does not come that quickly. LOL.My mom's iron is over 200 and her ferritan is 1200.  This is a slow to kill disease, I think.  It's not the disease itself but rather the damage it does to organs.

So, the next question.  When are you testing again.  I would maybe wait and not take anymore iron until you test again.  That should give you all the answer you will need.

Hey you gals:

With all this iron talk I am getting VERY unsure about taking extra iron.

Can someone please put my fears to rest and tell me I am not going to die of iron overload?

CLaudene

>

> Hi Birdy

> Yep I was the one with the really high iron. I did get the ferritin up to 59, so it did raise a bit from 21, but of course so did everything else, hence the high iron numbers!

> I was taking around 200 mg of iron a day split into a few doses. At the time I thought that was why I had the RT3 problem (still might have been the reason).

> It is hard to know if I should supplement at all now.

> Liz W

>

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[Guest guest]

First, if you have that problem death does not come that quickly. LOL.My mom's iron is over 200 and her ferritan is 1200.  This is a slow to kill disease, I think.  It's not the disease itself but rather the damage it does to organs.

So, the next question.  When are you testing again.  I would maybe wait and not take anymore iron until you test again.  That should give you all the answer you will need.

Hey you gals:

With all this iron talk I am getting VERY unsure about taking extra iron.

Can someone please put my fears to rest and tell me I am not going to die of iron overload?

CLaudene

>

> Hi Birdy

> Yep I was the one with the really high iron. I did get the ferritin up to 59, so it did raise a bit from 21, but of course so did everything else, hence the high iron numbers!

> I was taking around 200 mg of iron a day split into a few doses. At the time I thought that was why I had the RT3 problem (still might have been the reason).

> It is hard to know if I should supplement at all now.

> Liz W

>

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[Guest guest]

By your CBC (Red blood cells etc) and by an iron panel.

How did you know you were anemic?

Claudene

>

> this discussion of ferritin has  been very interesting.   i notice way

> back to 1993 i was anemic on my blood tests.   the doctors always said

> it was no big deal and many women have it.   i wonder if this is true or

> whether being anemic for years and years tore my health down.

>

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