Intro from Orlando FL- Addison’s Disease, Herditary Hemochromatosis H63D homozygous variant, with hypothyroid.

Mt8space · 2026-05-19T20:55:15-0500

Hello - am grateful to find this forum.

I am 58 year old man with Addison’s Disease, Herditary Hemochromatosis H63D homozygous variant, with hypothyroid. Dr. put me on TRT 100 mg Test Cyp in Aug 2025, once a week pin. Trough after 12 weeks was 334 Total T and 66.3 free T.

Dr. Doubled dose to 200mg and pinned twice a week. Total 12 weeks later at trough 535, Free T = 99.3.

Switched to Test Enanthate because insurance covered and has different carrier oil. Am still having slight rash on upper arms and sides. With both Test Cyp (cottonseed oil) & Ent (sesame oil). Also started to pin daily and now 6 weeks later I sit at Total T = 1378, Free T = 290.8. All bought from directly from same pharmacy via insurance covered.

My hematocrit raised significantly to 53.2 on 100mg a week. At 200mg it raised to 54.1. Had two phlebotomies as of 4/20/26 and now ferritin is 19 as of 5/19/26. Today I started 1st of 5 iron infusions with same hematologist that gave me a phlebotomy when my ferritin was at 34. Changing doctors this week as I am struggling with being cold, tired, diminished work capacity, brain fog, sore muscles and larger joints are extremely sore.

Obviously struggling with high hematocrit and phlebotomy dumping ferritin cycle. At 200mg a week before my last phlebotomy I felt best I have in years, until a week before my last phlebotomy as I started getting pressure headaches in back of my head, my work capacity diminished significantly, was easily out of breath with any significant physical exertion, and lightheaded/dizzy.

Question is can one work through this period of high hematocrit and adapt like an athlete can while training at altitude? Hematologist says no.

I am 6’3”, 205 at about 15% bf and am in very good cardio shape with recent cardio testing. I do about 180-250 minutes of zone 2 per week, lift 4 times a week and HIT cardio @ 40 minutes a week. All on average pending travel and work schedule.

See primary prescribing doctor tomorrow. He believes high hematocrit needs to level off before phlebotomy but hematologist says he is wrong. Yet she has me on a 5 week iron infusion protocol at 200mg once a week via IV. Cannot even get consensus amongst my own doctors.

Nelson Vergel · 2026-05-20T04:47:12-0500

Your symptoms right now are likely iron deficiency, not just high hematocrit

Ferritin at 19 is functionally iron deficient for an active man your size. Cold intolerance, fatigue, brain fog, muscle soreness, joint aching, diminished work capacity — that is a textbook iron deficiency symptom cluster. The phlebotomies solved one problem (elevated hematocrit) and created another (depleted iron stores). This is the classic TRT + erythrocytosis + phlebotomy trap that comes up repeatedly in this community. You felt your best before the last phlebotomy because your iron stores hadn't yet been crashed that low.

The iron infusion paradox with your diagnosis

This is where your case gets complicated. You have H63D homozygous hereditary hemochromatosis. While H63D/H63D is generally milder than C282Y, it does impair iron regulation. Your hematologist is infusing IV iron to correct functional iron deficiency caused by phlebotomies — which makes sense for your symptoms — but IV iron at 200mg/week TRT doses will also fuel further erythropoiesis. Your bone marrow now has both a strong hormonal signal (high testosterone → EPO → red cell production) and abundant iron substrate. Watch your hematocrit closely over the next 4–6 weeks of infusions. This protocol needs active monitoring, not just follow-up at the end of 5 weeks.

Can you adapt to high hematocrit like an altitude athlete? No.

Your hematologist is correct. Altitude athletes adapt because hypoxia triggers a controlled, temporary erythropoietic response that self-limits when they return to lower elevation. TRT-driven erythrocytosis is a persistent, non-self-limiting stimulus. The hematocrit doesn't plateau and stabilize at a safe level — it continues to climb as long as the testosterone signal remains high. The symptoms you described before your phlebotomy (occipital pressure headaches, dyspnea on exertion, lightheadedness) are hyperviscosity symptoms. That is not adaptation territory — that is the threshold where clotting and cardiovascular risk become real. At 6'3" and your fitness level you may tolerate higher hematocrit better than a sedentary man, but the upper limit of safety doesn't move because you exercise more.

Your primary doc is wrong about waiting for hematocrit to "level off"

On continuous TRT at therapeutic or above-therapeutic doses, hematocrit does not spontaneously stabilize at a safe level for most men with your erythrocytic response profile. It will remain elevated as long as your testosterone (and therefore EPO drive) stays high. Waiting is not a management strategy — it is delay with continued risk. Your hematologist has that right.

The real root issue: your dose is high for your hematocrit response

At 200mg/week you are running 1378 total T and 290.8 free T on daily pinning. That is an impressive response, and your free T is well above the top of most reference ranges. More importantly, at any dose — 100mg, 200mg — you are showing significant erythrocytosis (53.2 and 54.1 respectively). This tells us your red cell response to testosterone is high-magnitude. The sustainable long-term path for most men in this situation is dose reduction to find the level where you get therapeutic benefit without driving hematocrit above 52 without phlebotomy.

Some men with strong erythrocytic responses stabilize well at 120–140mg/week with daily or EOD pinning. The daily pinning you've switched to is the right call for hematocrit management (steadier levels, lower peak, less erythropoietic spike), but at 200mg/week total it may not be enough to keep hematocrit in range without ongoing phlebotomy.

On the rash with both cottonseed and sesame oil

Since you're reacting to both, the carrier oil itself may not be the culprit. The common denominators across most commercial testosterone formulations are benzyl alcohol (preservative) and benzyl benzoate (co-solvent). A reaction to one of those will follow you across carrier oils. Ask your compounding pharmacy whether they can prepare testosterone in MCT (medium chain triglyceride) oil with different preservative concentrations. Some members here have resolved persistent injection-site and systemic rash issues by switching to MCT-based compounded testosterone.

Addison's disease layer

This adds real complexity to symptom interpretation. Your cortisol axis is fully dependent on exogenous steroid — and many of the symptoms you're attributing to high hematocrit or iron deficiency (fatigue, cold intolerance, joint pain, brain fog, diminished work capacity) also overlap with suboptimal cortisol replacement. If your hydrocortisone or fludrocortisone dosing hasn't been reviewed recently in the context of your significantly increased exercise volume (180–250 min/week zone 2 plus lifting plus HIIT), that is worth evaluating. High training volume increases cortisol demand in Addison's patients. Ensure your new doctor understands the intersection of Addison's management and TRT before attributing all symptoms to a single cause.

What to bring to your appointment tomorrow

Request a full iron panel (ferritin, serum iron, TIBC, transferrin saturation) not just ferritin — especially given the infusion protocol starting today
Ask specifically about dose reduction to 120–140mg/week with daily pinning as a long-term hematocrit management strategy
Raise the benzyl alcohol/benzyl benzoate rash hypothesis and ask about MCT-based compounding
Ensure your new doctor has access to your Addison's management records and understands the cortisol demand increase with your training load
Get a clear written protocol on hematocrit thresholds that will trigger phlebotomy, so you're not caught again in the "who decides when" gap between your primary and hematologist
Please post your TSH, free T3, free T4, and and thyroid antibodies if you can.

You've done the right work — daily pinning, hydration, monitoring. The system around your care needs better coordination than you're currently getting.