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Post by s84720 on Jan 19, 2009 12:00:03 GMT -5
Hello everyone. I’m a 36-year-old male, and here was my situation as of a few months ago: Total cortisol (blood): 6.1 mcg/dL (4.6-20.6) Free cortisol (blood): 0.1 mcg/dL (0.07-0.93) Aldosterone: 1 ng/dL (<= 28ng/dL) Plasma ACTH: 10 pg/mL (7-50) <-- This suggests secondary AI. Unfortunately no renin or ACTH stim to back that up *Free T4: 1.2 ng/dL (0.8-1.8) *Free T3: 357 pg/dL (230-420) *RT3: 160 pg/mL (100-340) Total iron: 172 mcg/dL (45-170) Iron saturation: 55% (20-50) Ferritin: 217 ng/mL (20-345) Low-ish vitamins B12 and D2/3. * Thyroid labs don’t look too bad, but I have symptoms, so I’m on 1.5 grains of a timed-release T4/T3 compounded mix (I know how people feel about TR; I’m trying it the doc’s way until it fails.) Temps have come up, but still too variable. My question: if I’m secondary AI, with high iron, shouldn’t I have taken care of the iron prior to doing anything with HC? Because high iron can cause hypopit. Maybe it's the root cause. This raises the question: if my hypopit is induced from iron overload, is it reversible (via phlebotomies)? I’ve seen conflicting evidence on this online. A couple places say ‘no’. Another says “it can be, if you catch it early enough”: “therapeutic phlebotomy has been associated with the restoration of normal pituitary and gonadal function if these complications are of recent onset.” www.annals.org/cgi/content/full/129/11_Part_2/932Unfortunately I’m already on 20mg HC, and I saw a thread with Chris on the old STTM board pointing out that with ACTH already so low, it’s much easier to suppress, leading to adrenal atrophy. According to the timeline he gave there, it’s possible I can’t even go back to where I was w/o HC (been on 20mg for nine days, 10mg ten days before that) Any thoughts, from those familiar with iron overload and hypopit?
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Post by chemom on Jan 19, 2009 15:38:55 GMT -5
Just a quick question, because this isn't my forum to moderate anyway, but I've been through some iron issues with my husband just recently: did you have the iron panel rerun to make sure this wasn't a case of an illness temporarily raising your iron?
And to me, just my view, your thyroid labs don't look that good. Your Free T4 should be in the upper third, which in this case starts at 1.47, and your Free T3 should be higher.
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Post by s84720 on Jan 19, 2009 16:21:22 GMT -5
Good question re: re-doing the iron test. The doc just told me to "stop taking my iron supplements" (I've rarely taken any supplements that include iron, and after doing a pretty exhaustive look at what foods have iron, I decided my diet was pretty moderate -- not something that was 'inviting' an iron problem).
So when I pushed the iron question, he suggested we re-take it to be sure. It's scheduled for tomorrow morning.
And thanks for the comment on my thyroid levels. If that's so, then it seems to correlate with my level of symptoms. The doc did say I had room to improve.
Your question suggests maybe your husband re-tested, with different results?
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Post by chemom on Jan 19, 2009 18:01:35 GMT -5
Yes, we live in a pretty small town with 3 different labs. So my husband went to Lab A, and his ferritin came back high. So he went back there for the full iron panel. His numbers came back high (% sat. was about 80% ). So off he goes to a hematologist, thinking hereditary hemochromatosis. So this doc orders another iron panel, but ticked me off because it wasn't done fasting. That was done at Lab B. Those numbers all came back normal. Finally, my husband's hormone doc sent labs orders that were done at Lab C. Those all came back normal too, so from now on, we won't use Lab A for any labs. We've learned our lesson.
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Post by Chris Jackson on Jan 22, 2009 16:47:28 GMT -5
It's likely early enough, you could wean and try to lower your iron level. Don't get your hopes up that doing so will fix your pitutiary though.
Chris
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Post by s84720 on Jan 22, 2009 18:37:54 GMT -5
That's what I'm trying to gauge -- is there a 'reasonable' chance of reversing it? (if the iron is even the cause) Or is it a long shot? Is it a waste of 3-6 months to even try?
I've searched through these forums and haven't seen anyone's personal experience with this. But, your answer Chris suggests you have indeed seen people try, with little success?
I guess, when I found that old STTM thread, it hit me what I could be doing to my body by treating with HC. I'm a little hesitant now to 'kill' my adrenals without first being sure that all approaches more 'reasonable' have been tried. And I realize that's a harsh way of stating it, and I know that taking pills isn't the end of the world and I may feel so much better doing so that I won't even care. But given that my level of disability is manageable, it seems I should look at less drastic options first.
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Post by Lethal Lee on Jan 22, 2009 23:25:25 GMT -5
Howdy
I do have Heriditary Hemochromatosis (one C282Y mutation) & load Iron. I am Hypopit with Secondary AI. I also have Hashis Hypothyroid.
I am 51yo & only found out about my HH a little over 2 years ago. I only started Phlebs at end of Sept '08 & have them every 2 months. That keeps Ferritin around ~50.
I am NOT willing to stop Adrenal & Thyroid meds in order to "wait & see" if deironing will fix AI. I should point out I also have 9 Amalgams & Mercury Toxicity which also affects HPA & Thyroid.
I do think regardless deironing is certainly beneficial. It also prevents/reverses Liver damage, can prevent progression to Diabetes, may stop progession to Sex Hormone problems & can help/stop inflammation & joint/muscle pain.
I have found keeping Ferritin around 50 certainly helps with the joint/muscle symptoms. I also had Liver Ferrisan MRI to test Liver Iron Concentration. Fortunately that was OK largely I think to me using ALA for the past 8 years. ALA chelates metals including Mercury & Iron.
Have you actually tested for HFE Gene Mutations to confirm whether you have C282Y or H63D mutations? They are the commonly tested HH mutations. Note most Docs will say 2 mutations are needed for HH. Truth is even one (especially if it is C282Y) will mean you load Iron more than others & may well cause Ferritin & % Satn to be high.
I see you are retesting Iron profile which is good. You should also test CBC & ESR, hsCRP, Homocysteine, Fibronogen at same time to exclude inflammation/infection at same time.
I have read that some things are easier reversed than others. Hypogonadal problems are rarely helped & so is Diabetes although Insulin Resistance maybe. Gallbladder problems may be helped but its too late for me I had mine out in 2000. Muscle/joint pain can take years to resolve.
So my advice would be to support your Adrenals, Thyroid etc while persuing HH DX & reducing Iron. I dont think waiting years to see if deironing may help is wise. Think of all the damage that low Cortisol will cause in that time.
You can always try some time down the track to wean. My Adrenals dont show as atrophied as per Ultrasound despite many years of lack of ACTH stimulis. Have you had a Kidney/Adrenals Ultrasound done?
There are some who have weaned off HC after being on it for years & at pretty high doses. Val the Yahoo NTHAdrenals Mod is one.
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Post by s84720 on Jan 23, 2009 15:45:36 GMT -5
I haven't been tested for the mutation, and I'm not sure I'll push it. It sounds like it will only be a rough predictor of how quickly the iron will accumulate; and yet I'll end up having to do periodic iron tests anyway, which will tell me the same thing. I will definitely de-iron either way -- it's just a question of whether the iron is the root cause of all my issues, with reversible effects. The doctor did a pretty comprehensive blood panel the first time around, looking for infection. The original panel showed my body might be fighting something off, but looking for specific bugs in the next test, nothing showed up. There was one minor viral result, which we're treating just to be sure. (This is at a “fatigue clinic”, so after treating hormonal and nutritional definiciencies, they start looking for low-grade infections.)
Thanks for your good thoughts on reversibility and holding off adrenal support. It makes me feel a little better about ramping back on HC. And it helped me understand there's still a decent chance (although not guaranteed) it could come back after months of support. I haven't had an ultrasound -- didn't even realize the atrophy was a 'visible' phenomena. I'll keep that in mind for down the road.
Thanks to you all for giving of your time and experience here on these boards!
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