Re: To Lethal Lee - Hemochromatosis (Iron Overload)

[Guest guest]

Howdy - sorry just saw this post.

Which 2 Mutations do you have? Was it C282Y/C282Y?

WHat were your Iron Panel, CBC & Liver test results that Doc used to dx you? Did

you have Liver Biopsy or Ferriscan to work out LIC (Liver Iron Concentration)?

1/ The plan is to reduce my iron levels. What is the best ferritin level to aim

for when dealing with thyroid and adrenal problems?

A) What Iron levels you aim for is individual. Some use Ferritin below 50 some

say to initially go down to 20. Reality is it depends on YOU how well you handle

phlebs, what your Labs say after phlebs (I do CBC, ESR, Iron Panel after each

Phleb) how high Ferritin/Satn% was at dx, etc. Once deironed it is trial & error

to see how often you need to be phlebed to " maintain " (how quickly you load,

return of symptoms etc).

2/ We know too little iron plays into the ability to utilize T3, but does too

much create a problem?

a) Possibly but never seen anything written or researched on it. It certainly

interferes with T3-T4 conversion, can affect any organ, joints, endocrine gland,

increase infection/inflammation/Cancer. I can say I have been on T3 only coming

up to 2 years & am doing very well & MUCH better than I did on NTH.

3/ As the iron goes down, will I need to adjust thyroid down

a) I started T3 early Sept'08 & started phlebs same month. Took 4 months to

clear Rt3 & go Hyper. This coincided with bringing Ferritin down to 30's & going

into slight Iron Anemia (confirmed by labs). I discontinued phlebs & ate plenty

of Red meats etc until Iron Anemia resolved. Then restarted phlebs once Ferritin

exceeded 50 (I find symptoms return/increase.

I have also found supporting Liver (Milk Thistle), lots of antioxidants (Vits

A,D,E & K2, ALA**) and LOTS of B vits very important to cope with phlebs & to

allow more time between needed phlebs.

B Vits I do

1/ B12 alternate daily between 2 active forms Adeno 3000mcg +5000mcg methyl

sublingual. Just started B12 shots (100mg Hydroxy)

2/ Folate alternate daily between 2 active forms Folinic Acid & 5-MTHF

3/ B2 Riboflavin additional daily active form R5P

4/ B6 Pyridoxine additional daily active form P5P

5/ B Multi 2 caps daily active forms

All above except sublinguals are Thorne brand & I source from iHerb.

If interested can send you exact details just pm me.

I do the B12 shots myself (had lesson from Nurse & did first shot supervised)

they are cheap & B12+ needles are OTC here in Western Australia. Despite B12

levels through the roof from years of sublingual B12 I am getting benefits (mood

+ energy) from the shots .

I don't avoid red meat but don't do any offal meats (Liver, pat, Kidney, heart

etc), I don't do any Vit C but don't avoid fruits or juices (just have them away

from meals). I do have Coffee but only 1-2 daily max (all milk, weak, made at

home). I very rarely have Tea because of Fluoride.

VERY important to optimise Potassium (I use rx Potassium Chloride) & keep levels

at 4.5 minimum, Sodium (I use Alkala, unrefined Sea Salt & Florinef) & keep

levels 142-144, and Magnesium (I use Ancient Minerals transdermal oil) my RBC

Mag is currently 71% in range & aiming for top of range.

Before phleb very important to be well hydrated (salted water & take some to sip

during), eat hearty meal before (steak & fried onion in a toasted bun is my

favourite) & after drink & eat too (orange juice & oragnic nut bar my

favourite). Plan to take it very easy day of phleb I just go home & rest.

i LOVE the phlebs as I feel energised & mood lift when I have them.

There's a great Yahoo Group FHHF for HH'ers here

http://health.groups.yahoo.com/group/FHHF/?yguid=224638910

Lethal Lee

>

> Val suggested a posting to you and mentioned you might have some knowledge

regarding high iron. I've had severe adrenal fatigue, high rT3. Currently on

HC/T3 regime.

>

> I was diagnosed with hereditary hemochomatosis with two mutations. I begin

weekly phlebotomies next week.

[Guest guest]

Sorry for the delayed response.

I have C282y/H63D. And, my daughter has H63D/H63D.(No treatment for her, she is

only 18 and all is good)

My iron Saturation was 70% and Ferrin 120. She said no Liver Biopsy at this time

- it appears we have caught this very early. My Saturation was only 18% 6 months

before.

To date, I've had 3 phlebs. Weekly phlebs, 1/2 pint, then re-eval with Dr. They

check HGB prior to phleb. No increased energy yet. I love dr's orders to eat a

lot the day before and day after! I hear chocolate decreases iron absorbtion -

yippee!! BTW - no weight issues here!

I've been on HC/T3 since last December and trying to balance out the thyroid -

now all this comes into play. I'm sooooo confused.

My last labs were:

(These were only iron)

TIBC 254 (250-450)

UIBC 81 (150-375

Iron, Serum 173 (35-155)

Iron Saturatin 68% (15-55)

Ferritin 113 (13-150)

TSH .006 (.450-4.5)

Previous for Thyroid

Ft3 5.6 (2.0-4.4)

Rt3 63 (90-350)

TSH .008 (.450-4.5)

FT4 .42(.82-1.77)

B12 1055 (211-946)

I am on 20 MG HC, 1 Grain Erfa, and 56.25 Cynomel. I was feeling pretty good. Dr

wanted me to increase Erfa and decrease Cynomel, then begin wean off HC. Now

that I'm phlebbing, everything is on hold.

The hemotologist, of course, looks at TSH and tells me how hyper I am. Ha! I'm

just starting to feel normal...... I tap danced around her and told her I was

working with the other Doc to get stable on thyroid meds.

Target numbers are :Ferritin 25, Iron Saturation: <35%

I'm just wondering how that drop in Ferritin will play into the thyroid. Kind of

hard to figure out why you are fatigued when both thyroid and iron are involved.

This is a puzzle that has become way too complicated!

Sounds like you rode the same roller coaster.....

Question: If you are on T3 only, is your Free T4 low? And, how is your TSH? I'm

beginning to wonder if I have a pituitary problem. I only feel good with a very

low TSH. Also, my daughter has a very low TSH and has been diagnosed

'subclinical' hyper. I think it's just normal for our family - or if you have

HH.

> >

> > Val suggested a posting to you and mentioned you might have some knowledge

regarding high iron. I've had severe adrenal fatigue, high rT3. Currently on

HC/T3 regime.

> >

> > I was diagnosed with hereditary hemochomatosis with two mutations. I begin

weekly phlebotomies next week.

>

[Guest guest]

I'm not Lethal, so no comments on the iron, I'll leave that to Lethal Lee. :-))

But the TSH: having a low TSH doesn't mean you have pituitary problems when

you're taking thyroid replacement like you are. It's very normal to have a low

TSH when taking thyroid meds. Mine is .04 and I can tell you I don't have a

pituitary problem. I think it's also normal to have a low TSH if you feel good,

although maybe not as low as when on meds. I mean, low TSH simply means the body

has enough thyroid hormones and isn't asking for more because you're getting

enough. In Europe, they consider a TSH of 2 as hypo!

I would not let them diagnose your daugther as " hyper " unless her FREE t4 and

FREE t3 ALSO show she is hyper.

Kathleen

> > >

> > > Val suggested a posting to you and mentioned you might have some knowledge

regarding high iron. I've had severe adrenal fatigue, high rT3. Currently on

HC/T3 regime.

> > >

> > > I was diagnosed with hereditary hemochomatosis with two mutations. I begin

weekly phlebotomies next week.

> >

>

[Guest guest]

I'm not Lethal, so no comments on the iron, I'll leave that to Lethal Lee. :-))

But the TSH: having a low TSH doesn't mean you have pituitary problems when

you're taking thyroid replacement like you are. It's very normal to have a low

TSH when taking thyroid meds. Mine is .04 and I can tell you I don't have a

pituitary problem. I think it's also normal to have a low TSH if you feel good,

although maybe not as low as when on meds. I mean, low TSH simply means the body

has enough thyroid hormones and isn't asking for more because you're getting

enough. In Europe, they consider a TSH of 2 as hypo!

I would not let them diagnose your daugther as " hyper " unless her FREE t4 and

FREE t3 ALSO show she is hyper.

Kathleen

> > >

> > > Val suggested a posting to you and mentioned you might have some knowledge

regarding high iron. I've had severe adrenal fatigue, high rT3. Currently on

HC/T3 regime.

> > >

> > > I was diagnosed with hereditary hemochomatosis with two mutations. I begin

weekly phlebotomies next week.

> >

>

[Guest guest]

I'm not Lethal, so no comments on the iron, I'll leave that to Lethal Lee. :-))

But the TSH: having a low TSH doesn't mean you have pituitary problems when

you're taking thyroid replacement like you are. It's very normal to have a low

TSH when taking thyroid meds. Mine is .04 and I can tell you I don't have a

pituitary problem. I think it's also normal to have a low TSH if you feel good,

although maybe not as low as when on meds. I mean, low TSH simply means the body

has enough thyroid hormones and isn't asking for more because you're getting

enough. In Europe, they consider a TSH of 2 as hypo!

I would not let them diagnose your daugther as " hyper " unless her FREE t4 and

FREE t3 ALSO show she is hyper.

Kathleen

> > >

> > > Val suggested a posting to you and mentioned you might have some knowledge

regarding high iron. I've had severe adrenal fatigue, high rT3. Currently on

HC/T3 regime.

> > >

> > > I was diagnosed with hereditary hemochomatosis with two mutations. I begin

weekly phlebotomies next week.

> >

>

[Guest guest]

Question: If you are on T3 only, is your Free T4 low? And, how is your TSH? I'm

beginning to wonder if I have a pituitary problem. I only feel good with a very

low TSH. Also, my daughter has a very low TSH and has been diagnosed

'subclinical' hyper. I think it's just normal for our family - or if you have

HH.

My TSH has been undetectable since May'08 (on 3 1/2 grains NTH).

My Ft4 was also undetectable since Dec'08 (started T3 only in Sept'08). In fact

we haven't bothered to test Ft4 since & we completely ignore the TSH.

In fact if you have detectable Ft4 on T3 only it means you aren't taking

enough!!!

My Ft3 is elevated which it NEEDS to be when on T3 only.

I am Hypopituitary for Cortisol (have low ACTH) so am Secondary AI.

However I am NOT Secondary for Thyroid as premeds my TSH was 2.77.

As posted only TSH PRE Thyroid meds indicates whether Hypopit or not.

Has your daughter had FREES tested as well as Thyroid Abs? TSH alone does NOT

indicate Hyperthyroid.

Lethal Lee

> > > >

> > > > Val suggested a posting to you and mentioned you might have some

knowledge regarding high iron. I've had severe adrenal fatigue, high rT3.

Currently on HC/T3 regime.

> > > >

> > > > I was diagnosed with hereditary hemochomatosis with two mutations. I

begin weekly phlebotomies next week.

> > >

> >

>

[Guest guest]

The phlebs are going OK. I've now had 4 (once a week and a 1/2 pint). Not

feeling energized or great. Just another day after a big needle. Thankfully,

I have good veins!

I see the Dr next week for follow up and figure she will run a ferritin and iron

panel.

My Ft4 is low, Ft3 is high, and TSH very low. I feel pretty good this way. My Dr

is sort of OK with this, but wants me to increase the Erfa to get the FT4 up a

little and decrease Cytomel to get the FT3 down a little. He's not worried about

the TSH.

I've been on 20mg HC since Dec 09 and would like to try and wean off. Not sure

if the timing is good for that.

Problem is: I saw the hemotologist - she ran blood work and the first thing she

says is " You are hyperthyroid - your TSH is too low " Geeze! I side stepped her

and said I was working on that with my Dr. If you have a good doctor regarding

Thyroid, and have to see other doctors - they all jump in on the low TSH!

How did you convince your Dr to ignore the FT4 and the TSH?

> > > > >

> > > > > Val suggested a posting to you and mentioned you might have some

knowledge regarding high iron. I've had severe adrenal fatigue, high rT3.

Currently on HC/T3 regime.

> > > > >

> > > > > I was diagnosed with hereditary hemochomatosis with two mutations. I

begin weekly phlebotomies next week.

> > > >

> > >

> >

>