Re: Cautionary note about Ferritin....

[Guest guest]

I meant ferritin under 60.

> >>> >

> >>> > 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

> >>> >

> >>>

> >>

> >>

> >

>

[Guest guest]

What's your panel look like?

>

> > I meant ferritin under 60.

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>

[Guest guest]

Yes Sol, you are the exception we all wish we were. But have ya watched the

movie Sol????lol.

[Guest guest]

As I stated in another post, all of the hemochromatosis and iron overload websites I've come across have stated that iron SAT should not be above 40% and mine had risen from 44% (when my ferritin was 76) in January of this year to 48% in July. And you missed the UIBC which was out of range low - also an indicator of iron overload:

http://ironoverload.org/Diagnosis.htmI've never heard of ferritin dropping before iron. Where are you getting that information from? I would think the body would use what's readily available before tapping into its stores. And if a person has high ferritin, don't they typically have high serum iron as well?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

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

>>  Serum ferritin level - Ferritin is an indicator of stored iron in the body. Ferritin is the main protein that stores iron for areas that need it, especially the liver and the bone marrow where red blood cells are made. The iron ferritin level is the first in line to drop if the individual suffers any iron insufficiency from diet,hypothyroidism, malabsorption or loss during heavy or menstruation lasting more than 5 days. A drop in the iron ferritin level occurs before any depletion in serum iron (as seen in iron-deficient anemia) and may decrease significantly without any obvious symptoms whatsoever. While the serum ferritin level at which a deficiency can be claimed is hotly argued by different schools of doctors, an excess of serum ferritin is generally agreed to be a bad thing. 

> > So no, iron levels don't always coinside with ferritin levels. Often, ferritin levels go low before iron serum levels do. If ferritin didn't directly effect tissues (not just total iron serum levels), high ferritin (above 150) wouldn't be so dangerous. If that was the case, only high iron serum levels would be be dangerous. Iron serum levels can change rapidly, so I believe ferritin to be more accurate of a steady state. 

> > 07.09.09 Iron – 128 (range 35 – 155)> > >>> 07.09.09 Iron Saturation (SAT) – 48 (range 15 – 55)> > >>> 07.09.09 Iron TIBC – 264 (range 250 – 450)

> > >>> 07.09.09 Iron UIBC – 136 L (range 150 – 375)> > >>> 07.09.09 Ferritin – 50 (range 10 – 291)> > I see no levels that are out of range high- am I missing something here??? All this last test means is that you are not clinically anemic YET. An elevated transferrin-iron saturation percentage is usually greater than 50%. Just as early signs of adrenal fatigue are HIGH cortisol, this may be your bodies way of compensating for low storage iron (resulting in a higher - but NOT high saturation level). Also, transferrin levels are highly genetic and NOT the sole way to diagnose iron overload. 

> > Of course all this is your decision but I think it would be foolish to put yourself at risk for anemia before taking at least one more blood test. 

So it's iron that the body is using - not ferritin. But typically a person's iron levels will coincide with their ferritin level - is that about right?

But that wouldn't apply to a person like me who had lowish ferritin with highish iron and high iron saturation. So, in my case, I would need to rely more on iron levels than ferritin levels. Correct?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> 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>

[Guest guest]

I'm still confused. More often than not, a person with low ferritin is going to have low iron...so why should supplementing iron cause that person to be at risk for hemochromatosis?With lowish ferritin and no history of hemochromatosis in my family, no doctor is going to order the gene test for me...and it's not even conclusive since they only test for 2 genes and there are more than 40.

And in case I didn't make it clear before - I don't think I have hemochromatosis. But you can have iron overload without hemochromatosis. That is what I donated blood to avoid. Or are you saying that's an acceptable risk and it should be supplemented anyway?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

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

>> I meant ferritin under 60.

I'm certainly not trying to be the exception...lol. I'd much rather have ferritin levels that make sense alongside my iron levels. But that hasn't been my luck thus far.

I don't understand what you mean about supplementing thyroid under 60. Do you mean under the age of 60? Why would that increase a person's chance for getting hemochromatosis, since it's a genetic disease?

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> 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>

[Guest guest]

http://www.irontoxicity.com/hcp/diagnosis.jsp

Many doctors advise regular phlebotomy for people who are diagnosed with

hemochromatosis, even if they do not yet show symptoms.5 Depending upon the

amount of iron in your blood, it may take 30 or more phlebotomies to bring your

iron levels down to the desired level. Treatment usually begins with phlebotomy

once or twice a week until iron levels are in a target range. Most people are

free of early-stage symptoms soon after phlebotomy begins. Weekly treatment

continues until:

Ferritin iron levels are less than 50 nanograms (ng) per milliliter.

Transferrin saturation levels are less than 50%.

Hemoglobin concentration levels off. The ideal levels are not the same for men

and women.

I understand your concern about the progression in your labs. Low UIBC is common

with a higher saturation. I just don't know of any doc who would advise an iron

overload patient to continue phlebotomy with a ferritin of less than 50.

http://medinfo.ufl.edu:8050/~med2010/Documents/Pathology/iron.doc

Maybe your issue has more to do with leaky gut and inflammaion?

You can also google " iron avid " which is the trend your labs have shown. I found

this quote:

" The iron avid patient has a normal to low ferritin (usually low) but a very

high transferrin-iron-saturation percentage (Tsat%). Experts agree that iron

avidity is probably the body's response to not enough iron coming into the

system. Hemochromatosis patients who have become iron avid, should discontinue

phlebotomies and eat to replenish iron stores. "

Hope this helps.

> >>>> >

> >>>> > 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

> >>>> >

> >>>>

> >>>

> >>>

> >>

> >

>

[Guest guest]

WEll your transferrin (highly genetic) sucks (%sat) so that's probably why

you'll need more iron than other ppl (don't worry so do I) probably for the rest

of your life. As far as ferritin goes, it might be 50 (which initially doesn't

seem that bad), but your 50 may not be the same as another person's 50 with a

higher saturation %. So you may need a higher ferritin than most (yeah i'm in

that club too)for thyroid to be utilized better. You're anemic- that tells it

all. YOU NEED MO IRON:)

> > >

> > > > I meant ferritin under 60.

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[Guest guest]

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 guess it could

happen but the only way you would know is to do a liver biopsy (which is where

it mostly loads).

YOu can be a single carrier of hemochromatosis (heterozygote) and only display

partial symptoms of it (would explain highish iron without the high ferritin

(like above 150) to diagnose it)but not have it because you aren't a homozygote

carrier.

[Guest guest]

how is your cortisol. i was stopped at exactly 60mcg of T3 till i got on HC.

> > > > >

> > > > > > I meant ferritin under 60.

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[Guest guest]

I don't know- if I were you, I'd be half tempted to get just one iron infusion

and see how it goes. I " m going to do that at my ferritin of 62.4......but i'm

prone to anemia so I think I just need more iron than most ppl. IMO.

> > > > > > >

> > > > > > > > I meant ferritin under 60.

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[Guest guest]

I might get my doc to do half a normal dose of infusion. I just have a horrible

leaky gut so anything that goes in my tummy is toast at the most. I'm gonna

research it more and see which kind I like best and report back:)

> > > > > > > > >

> > > > > > > > > > I meant ferritin under 60.

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[Guest guest]

Thank you so much for this info. This is exactly what is happening to me at the

moment. I didn't realise it could have such an impact.

Im having heart flutters, skipped beats, nervous tension, anxiety etc yet my

body is puffy, ive got brain fog again and Im gaining weight (quickly). I have

started on 200mg of elemental iron a day to bring my ferritin up from 30. It

was 56 when I started cytomel three months ago but its dropped rapidly. I can

barely tolerate 20mcg of Cytomel a day (and I have no thyroid).

Will starting HC help with this problem too. I need to be taking more than

20mcg of cytomel - my FT3 is 2.2 and TSH is 38.

>

> 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:)

>

[Guest guest]

Here's the calculation for dextran:

Total iron infusion: Dose of iron dextran (mg) =

weight(kg) x [target Hb(g/L) – actual Hb(g/L)] x

0.24 + 500 mg iron for iron stores (if body

weight >35 kg)

And it says for clinical use of ferritin under 50 sooo....

[Guest guest]

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]

Yeah but I " m pretty sure I had some sort of thyroid resistance but who knows. I

mean I don't think most pppl have to get that high but who knows....

>

> > 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]

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]

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]

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:)

[Guest guest]

I never said I was going to continue the phlebotomies. It was a one time deal as I felt that was all that would be needed to bring my numbers down.It has only been a month since I donated the blood, but I'll see if I can get my levels checked again in the next week or two and see where they are now.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

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

>> http://www.irontoxicity.com/hcp/diagnosis.jsp> > Many doctors advise regular phlebotomy for people who are diagnosed with hemochromatosis, even if they do not yet show symptoms.5 Depending upon the amount of iron in your blood, it may take 30 or more phlebotomies to bring your iron levels down to the desired level. Treatment usually begins with phlebotomy once or twice a week until iron levels are in a target range. Most people are free of early-stage symptoms soon after phlebotomy begins. Weekly treatment continues until:

> > Ferritin iron levels are less than 50 nanograms (ng) per milliliter. > Transferrin saturation levels are less than 50%. > Hemoglobin concentration levels off. The ideal levels are not the same for men and women. 

> > I understand your concern about the progression in your labs. Low UIBC is common with a higher saturation. I just don't know of any doc who would advise an iron overload patient to continue phlebotomy with a ferritin of less than 50. 

> > http://medinfo.ufl.edu:8050/~med2010/Documents/Pathology/iron.doc> > Maybe your issue has more to do with leaky gut and inflammaion?

> > You can also google " iron avid " which is the trend your labs have shown. I found this quote:> > " The iron avid patient has a normal to low ferritin (usually low) but a very high transferrin-iron-saturation percentage (Tsat%). Experts agree that iron avidity is probably the body's response to not enough iron coming into the system. Hemochromatosis patients who have become iron avid, should discontinue phlebotomies and eat to replenish iron stores. "  

> > Hope this helps.

>> 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>

[Guest guest]

Well, that sounds like a good move Rainbow.

[Guest guest]

Well, that sounds like a good move Rainbow.

[Guest guest]

Sure! I keep them on stickies on word docs as I find them. I will include links,

too. I will note when its ME.

>

> 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]

I understand that ferritin is important, but it's dangerous for people to

supplement iron if they don't need it.

The above is a quote from a previous poster. I'd be interested in getting a link

to where this was found. Where does it say that its dangerous to supplement iron

with low ferritin? I'm curious. If its out there and can be explained, I'll

consider myself corrected but I couldn't find it.

> >

> > 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]

And if you want to read about what too much iron will do to your system, just google hemochromatosis.~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat Sensitivity

Rx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tspMy Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

Perhaps you need to read the quote again. I never said it was dangerous to supplement iron with low ferritin. I said it's dangerous to supplement iron if you already have high iron. I wasn't talking about ferritin levels at all - I was talking about serum iron levels, which I don't think should be ignored in favor of ferritin.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> 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>

[Guest guest]

Perhaps you need to read the quote again. I never said it was dangerous to supplement iron with low ferritin. I said it's dangerous to supplement iron if you already have high iron. I wasn't talking about ferritin levels at all - I was talking about serum iron levels, which I don't think should be ignored in favor of ferritin.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

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

>> I understand that ferritin is important, but it's dangerous for people to supplement iron if they don't need it.> > The above is a quote from a previous poster. I'd be interested in getting a link to where this was found. Where does it say that its dangerous to supplement iron with low ferritin? I'm curious. If its out there and can be explained, I'll consider myself corrected but I couldn't find it.

I don't think I made a mistake at all. My thyroid numbers didn't look " that bad " for the 15 years before I was diagnosed with hypothyroidism, but I'd had the disease for at least that long. And leaving it untreated has caused all kinds of issues. I know better than to wait around for things to get bad before doing something about them. You don't excrete iron. So my numbers were never going to go down on their own. They were only going to continue to rise. And I'd rather not wait until my organs are full of iron before taking steps to correct the issue. I'm sure you know as well as I do that the normal ranges labs use are crap. Every hemochromatosis website I found said that iron saturation should be no higher than 35-40% - so by that measure, yes I was above the range.

I understand that ferritin is important, but it's dangerous for people to supplement iron if they don't need it. When I first joined these groups, I assumed that most people with thyroid/adrenal issues had low iron and started supplementing before doing any iron testing...because I'd heard SO many people talk about it. Now, that was a stupid decision on my part - I'm not blaming anyone but me. But it's an easy trap for newbies to fall into and I'd hate to see someone get harmed down the road by making the same mistake I did.

~Rainbow~29 year old Female 5'6 " 130lbsDx: Hashi's, AF, Wheat SensitivityRx/OTC: Cynomel 37.5mcg, HC 27.5mg, Potassium Cl 20meq, Sea Salt 1.75tsp

My Log: http://tinyurl.com/pvgjmbMy Blog: http://hyporainbow.wordpress.com

>> 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>