Addison’s and hereditary haemochromatosis — anyone else?

[MTSpace]

Is anyone else here living with Hereditary Hemochromatosis or Addison’s? Both landed on me, plus HypoThyroid, for good measure.

BPC157, TB500 and GHK-cu are in the mix. TRT started 6 months ago under my doctor. So many moving parts, and so many pushes and pulls, come with treating hormones this way. Because you can never hit the perfect hydrocortisone dose and it is catabolic, over dosing ends up being necessary for quality of life. The thyroid side is well managed. Adjustment is where TRT still sits. 100mg per week was the start. Testosterone came back 340. Pinning every day, so a low responder to TRT. Yet hematocrit and hemoglobin climb quickly regardless. And with Hereditary Hemochromotosis in the picture, a phlebotomy can drive my ferritin too far down.

A balancing act, in progress.

Anything you can suggest or share from experience would help me when I raise it with my doctor. He knows all about my peptide regiment as well — younger and progressive, this one.

 

[King Sully]

MTSpace said:


Does anyone here have Addison’s or Hereditary Hemochromatosis? I have been blessed with both as well as HypoThyroid.

Been using BPC157, TB500 with GHK-cu. My doctor put me on TRT 6 months ago. There are a lot of pushes and pulls involved with all the moving parts of my hormone treatment. Hydrocortisone is catabolic as you can never dose the perfect dose, so over dosing is required for quality of life. Thyroid is well managed. TRT is still an adjustment. Started at 100mg per week. Testosterone came back 340. And I pin every day so low responder to TRT. But hematocrit and hemoglobin definitely rise quickly. And being I have Hereditary Hemochromotosis, a phlebotomy can lower my ferritin too low.

A balancing act in process.

Any suggestions, experiences to share that may be helpful to discuss with my doctor? My doctor is very aware of my peptide regiment too as he is younger and progressive.

Click to expand...

My wife inherited hereditary hemochromatosis — she carries a gene from each parent. She isn’t on any peptides. I think Tirzepatode might help her, but I’m unsure how it could interact with her condition. I’ve noticed you posting in other threads, so I assume you’re on a glp at the moment. I’d like to put this out there and find out whether anyone else here has it, and what their experience has been. I’m keen to learn what she might expect if she began a low dose of tirz.

 

[MTSpace]

King Sully said:

My wife inherited hereditary hemochromatosis — she carries a gene from each parent. She isn’t on any peptides. I think Tirzepatode might help her, but I’m unsure how it could interact with her condition. I’ve noticed you posting in other threads, so I assume you’re on a glp at the moment. I’d like to put this out there and find out whether anyone else here has it, and what their experience has been. I’m keen to learn what she might expect if she began a low dose of tirz.

Yes, I’m on Tirz and TRT right now, both under a doctor’s supervision. For recovery after surgery or an injury I’ve run cycles of KPV, BPC-157, TB500 and GHK-cu, though I’d like to stay on Tirz for a good while. My metabolic markers have improved — insulin resistance, A1C and lipids have all stayed in the optimized range.

My Tirz dosing began at .5mg per week, purely to let my body get used to the medication. I titrated up to 2.5mg a week and plan to remain at that level unless my metabolic markers indicate I should go up or down.

 

[King Sully]

MTSpace said:

Yes, I’m on Tirz and TRT right now, both under a doctor’s supervision. For recovery after surgery or an injury I’ve run cycles of KPV, BPC-157, TB500 and GHK-cu, though I’d like to stay on Tirz for a good while. My metabolic markers have improved — insulin resistance, A1C and lipids have all stayed in the optimized range.

My Tirz dosing began at .5mg per week, purely to let my body get used to the medication. I titrated up to 2.5mg a week and plan to remain at that level unless my metabolic markers indicate I should go up or down.

Thanks for getting back to me!! She’s thinking about going through Collective to get an MD’s opinion and a prescription. Has your ferritin improved? I came across info saying GLP’s may help slow how iron gets absorbed. Glad to have someone I can ask.

 

[MTSpace]

My TRT has me dealing with low ferritin now — the reverse of my pre-TRT situation, when ferritin ran high and I needed phlebotomies. In the 2 years before I started TRT, I avoided phlebotomies entirely by using tea, coffee, and diet to blunt iron absorption, which worked well. Right now I'm trying to dial in TRT & Tirz to hold my ferritin between 70-100. It's been a struggle. Currently 60.

What ferritin does your wife usually run? How frequently do they phlebotomize her? How long ago was she diagnosed? Which variant? I'm H63D Homozygous, diagnosed since 2020. My ferritin got up to around 600ish, and it took 8 phlebotomies to bring it under 100. I had an excellent hematologist who taught me a lot. I miss that doctor, since the last two and my current hematologist have been disappointing.

 

[King Sully]

She received her diagnosis in 2025. Her latest labs came back with ferritin at 122.5 and hemoglobin at 14.5. Every 8 weeks she undergoes phlebotomy. At the time of diagnosis, her ferritin was 225.5.

Her genetics show homozygous C282Y, an HFE mutation. She inherited the same mutation on chromosome 6 from each parent. Her hematologist has not impressed her much, and I believe she would rather see someone different. Location is a limiting factor, unfortunately.

This Thursday she has a phlebotomy scheduled. Tomorrow, though, she is going for labs on her own to check pre-phlebotomy ferritin. Her hematologist never orders that test, and she wants to see how high it climbs before she donates blood.

 

[cujet]

My own list: severe Secondary Adrenal Insufficiency, thyroid failure from Hashimoto's, MCTD (mixed connective tissue disease, in the lupus family) and Myasthenia Gravis.

Your point about the hydrocortisone dose lands with me. Nailing it down really is a moving target — activity levels, thyroid dose, seasonal temps and so on all shift it.

To keep MCTD symptoms suppressed I take 15mg prednisone, and that makes a huge difference to the Hydrocortisone roller coaster ride. Even with it, being active means I need a lot of Hydrocortisone. And when I crash, I crash hard — days to weeks to recover. That's how hard the balance is to strike.

Roughly half the time I feel normal. For me that seems to take modest activity, adequate calories, and a lot of cortisol.

This may only apply to me, but Optimum Nutrition's "Amino Energy" plus protein isolate (in modest quantities) is a godsend. My metabolism is definitely affected by all of this. Combining the non essential aminos with essential aminos works like a champ for operational energy.

 

[cujet]

My T is very low too. At times it has measured 25ng/dl — yikes. Shots gave me side effects, so I stopped them and switched to a compounded 20% T creme. That is a serious amount of T for a topical. Getting it right takes some effort and know-how: rotating where you apply it, putting it on the scrotum, thinning it with rubbing alcohol, and sometimes adding pain relief topicals like biofreeze to help it act as a transdermal. The best approach is a shaved scrotum plus a little rubbing alcohol as a transdermal.

I can get levels above 1000ng/dl almost instantly with this. Side effects are far fewer as well. One thing I do need to keep an eye on is hematocrit if I leave T levels too high for too long. The good news is I can handle that day to day by rotating application sites — shoulders, for instance, absorb less.

 

[MTSpace]

King Sully said:

She received her diagnosis in 2025. Her latest labs came back with ferritin at 122.5 and hemoglobin at 14.5. Every 8 weeks she undergoes phlebotomy. At the time of diagnosis, her ferritin was 225.5.

Her genetics show homozygous C282Y, an HFE mutation. She inherited the same mutation on chromosome 6 from each parent. Her hematologist has not impressed her much, and I believe she would rather see someone different. Location is a limiting factor, unfortunately.

This Thursday she has a phlebotomy scheduled. Tomorrow, though, she is going for labs on her own to check pre-phlebotomy ferritin. Her hematologist never orders that test, and she wants to see how high it climbs before she donates blood.

It truly amazes me that a hematologist would keep going with phlebotomy while the ferritin level was “unknown.” Two of my own hematologists did the same thing, and on 2 occasions my ferritin was driven down into the teens — it took me 4-8 months to bounce back. For months my quality of life was awful. These days I won’t consent to phlebotomy unless I have a full picture of every marker on my iron panel. I’m glad your wife is diligent enough to get her ferritin checked before her phlebotomy. She has to be her own biggest advocate and recognize that doctors treat us along the bell-shaped curve. Some of us don’t land in the 85%, and we need treatment tailored to us.

 

[MTSpace]

cujet said:

My own list: severe Secondary Adrenal Insufficiency, thyroid failure from Hashimoto's, MCTD (mixed connective tissue disease, in the lupus family) and Myasthenia Gravis.

Your point about the hydrocortisone dose lands with me. Nailing it down really is a moving target — activity levels, thyroid dose, seasonal temps and so on all shift it.

To keep MCTD symptoms suppressed I take 15mg prednisone, and that makes a huge difference to the Hydrocortisone roller coaster ride. Even with it, being active means I need a lot of Hydrocortisone. And when I crash, I crash hard — days to weeks to recover. That's how hard the balance is to strike.

Roughly half the time I feel normal. For me that seems to take modest activity, adequate calories, and a lot of cortisol.

This may only apply to me, but Optimum Nutrition's "Amino Energy" plus protein isolate (in modest quantities) is a godsend. My metabolism is definitely affected by all of this. Combining the non essential aminos with essential aminos works like a champ for operational energy.

What might be driving the collection of conditions we share? Could it be genes, environment, diet, or some mix of those and other factors?

From age 14 my mother smoked, including while pregnant with me, and I was exposed to secondhand smoke nonstop until I left home as a young adult. For my first 20 years I ate a lot of highly processed food, and sugary boxed cereal, milk, candy bars and sodas were regular parts of my diet for over 30 years. In my 30’s I began overhauling my diet and lifestyle, but had the harm already been done?

Hereditary Hemochromatosis is clearly genetic, but Hashimoto’s? Addison’s? A-fib? Naturally high lipoprotein?

I had to look up Myasthenia Gravis. With everything you’re dealing with, you really drew the short straw. Was your secondary adrenal insufficiency tied to medication or treatment for MCTD or another condition? Or to a pituitary problem?

What’s your age? How active are you? I’m 59 and still hike and do things many people never get to experience. Two years ago I hiked rim to rim of the Grand Canyon at a casual pace in 9 hours (I could have finished under 7 if I’d pushed, but I took a side route and enjoyed a nice lunch break at Phantom Ranch). Last year I hiked in Brazil. A few years back I did some light rock climbing and hiking in the Alps. I keep pushing to hold off the Old Man as long as I can. It’s definitely a battle. The idea behind peptides and TRT is to help my efforts and stretch out my outdoor adventures.

 

[cujet]

MTSpace said:

What might be driving the collection of conditions we share? Could it be genes, environment, diet, or some mix of those and other factors?

From age 14 my mother smoked, including while pregnant with me, and I was exposed to secondhand smoke nonstop until I left home as a young adult. For my first 20 years I ate a lot of highly processed food, and sugary boxed cereal, milk, candy bars and sodas were regular parts of my diet for over 30 years. In my 30’s I began overhauling my diet and lifestyle, but had the harm already been done?

Hereditary Hemochromatosis is clearly genetic, but Hashimoto’s? Addison’s? A-fib? Naturally high lipoprotein?

I had to look up Myasthenia Gravis. With everything you’re dealing with, you really drew the short straw. Was your secondary adrenal insufficiency tied to medication or treatment for MCTD or another condition? Or to a pituitary problem?

What’s your age? How active are you? I’m 59 and still hike and do things many people never get to experience. Two years ago I hiked rim to rim of the Grand Canyon at a casual pace in 9 hours (I could have finished under 7 if I’d pushed, but I took a side route and enjoyed a nice lunch break at Phantom Ranch). Last year I hiked in Brazil. A few years back I did some light rock climbing and hiking in the Alps. I keep pushing to hold off the Old Man as long as I can. It’s definitely a battle. The idea behind peptides and TRT is to help my efforts and stretch out my outdoor adventures.

My case has a clear cause, as far as I'm concerned. I'm 63 now and retired because I had to be; sport has been a big part of my life for decades. These days even modest exertion wipes me out completely, which is deeply frustrating.

When I was 33, I caught a severe case of Mono — Epstein Barr virus. It came from my sister in law at a family wedding (and no, there was no kissing involved). She fell ill immediately after the ceremony and spent a long stretch in hospital. Not long after, she was diagnosed with Lupus. Every one of my younger brothers also caught EB virus, and one of them developed Rheumatoid Arthritis soon afterwards.

2 weeks later I was in hospital myself with a severe case of EB virus, type II. A heart infection killed me twice. Words can't describe how awful it was. I have never bounced back. My thyroid gave out straight away, and ultra low T followed. Other autoimmune conditions turned up years later.

What I'm getting at: EB Virus is 100% Responsible for this. Take MS — we now know it is a response to the EB virus. Most autoimmune diseases, it seems, have an EB virus connection.

Had I caught Mono as a child rather than at 33, while I was a committed athlete (bicycle racer), things would probably have gone better for me. The virus went after my legs and I was in agony on top of being desperately ill.

 

[MTSpace]

Has anyone come across research hospitals or medical teams that might be able to assist you, or that could take your case and turn it into a future protocol for other patients? Have you taken part in any clinical trials? Have you seen an infectious disease specialist?

My wife has fought EB as an adult for years and is currently dealing with two cancers. Before I read your line "I know exactly what caused my issues" in your post, I had never linked the possible "dots" between EB as the underlying cause of at least one of her cancers. She has undergone genetic testing, probes, pokes, scans and bloodwork more than anyone else I know. The research hospital where she receives care says she uses their services at a higher "than most" rate. She is enrolled in two clinical trials that will only benefit others in the future and will not produce better or worse outcomes than her current prognosis. Her trial results could potentially help our children and grandchildren if there are genetic components to the cancers. But because of your response, we now have another possible root cause to raise with her cancer research doctors. Thank you!

 

[cujet]

MTSpace said:

Has anyone come across research hospitals or medical teams that might be able to assist you, or that could take your case and turn it into a future protocol for other patients? Have you taken part in any clinical trials? Have you seen an infectious disease specialist?

My wife has fought EB as an adult for years and is currently dealing with two cancers. Before I read your line "I know exactly what caused my issues" in your post, I had never linked the possible "dots" between EB as the underlying cause of at least one of her cancers. She has undergone genetic testing, probes, pokes, scans and bloodwork more than anyone else I know. The research hospital where she receives care says she uses their services at a higher "than most" rate. She is enrolled in two clinical trials that will only benefit others in the future and will not produce better or worse outcomes than her current prognosis. Her trial results could potentially help our children and grandchildren if there are genetic components to the cancers. But because of your response, we now have another possible root cause to raise with her cancer research doctors. Thank you!

I'm truly sorry to read about your wife's cancer — my thoughts are with her. AI might be worth exploring for any possible EBV connection. If such a link exists, I wonder whether holding the virus down with Valtrex could make a difference. In my own case, long-term Valtrex gave me some benefit; I discovered this while being treated for shingles. The virus also seemed to rebound slowly — put another way, I continued to feel well for a stretch after I stopped taking Valtrex.

Per Grok: EBV carries a large genome that codes for about 80–100 protein-coding genes along with numerous non-coding RNAs. It moves between a handful of distinct latency programs, each switching on or off different portions of those genes, and strains vary genetically (particularly Type 1 versus Type 2). Even though any one infected cell typically expresses only a limited set of viral products, this leaves a wide theoretical range of expression states and viral variants.

Everything in my case is autoimmune. Research hospitals and research groups have been a dead end. Every so often I email the trial people. An infectious disease specialist did see me — he explained things but offered no treatment. Cleveland Clinic (in the days before it became the giant it is now) made a serious effort but never got anywhere. What I keep getting is 'the standard of care': Synthroid for thyroid failure, Hydro for Adrl Insf, and so on.

Prednisone dampens the immune system, and when I'm on it I can function.

 

[bamagirl26]

cujet said:

My case has a clear cause, as far as I'm concerned. I'm 63 now and retired because I had to be; sport has been a big part of my life for decades. These days even modest exertion wipes me out completely, which is deeply frustrating.

When I was 33, I caught a severe case of Mono — Epstein Barr virus. It came from my sister in law at a family wedding (and no, there was no kissing involved). She fell ill immediately after the ceremony and spent a long stretch in hospital. Not long after, she was diagnosed with Lupus. Every one of my younger brothers also caught EB virus, and one of them developed Rheumatoid Arthritis soon afterwards.

2 weeks later I was in hospital myself with a severe case of EB virus, type II. A heart infection killed me twice. Words can't describe how awful it was. I have never bounced back. My thyroid gave out straight away, and ultra low T followed. Other autoimmune conditions turned up years later.

What I'm getting at: EB Virus is 100% Responsible for this. Take MS — we now know it is a response to the EB virus. Most autoimmune diseases, it seems, have an EB virus connection.

Had I caught Mono as a child rather than at 33, while I was a committed athlete (bicycle racer), things would probably have gone better for me. The virus went after my legs and I was in agony on top of being desperately ill.

Wow, that's a lot to handle! I'm relieved I've never had Mono. Reading your post worries me, since 2 of my kids in college probably had mono, even though it was never officially diagnosed. That's frightening. I'm sorry you're dealing with all of that.

 

[cujet]

OP, how does low cortisol present for you, and what side effects have you had from treatment? Have extended release options been part of your regimen? And does more activity mean you need more? For me it does.

When my cortisol drops, the fatigue is beyond belief. Combining prednisone with hydrocortisone is a real weight gain monster.

At 33, while eating strictly, my weight jumped once my thyroid failed. For years I held at 180 pounds on one meal/day, usually a salad with grilled fish. No carbs. As I got older, weight control got harder, though I still did well enough. Then fatigue arrived, along with near-coma episodes and a thready heartbeat... Horrible.

By my late 50's I had to be on Pred+Hydro. My weight went from 200 to 262 in a very short time. I'm certain prednisone is mostly what causes the trouble. I've tried many times; I can't function without it. Reta brought my weight back down to 193-195, and that's where I seem to stay on 7mg Reta/wk.