Posts by Gary Ross6

I'm looking for a recommendation for a gastroenterologist, specifically someone who specializes in Barrett's esophagus. If you know anyone in Chicago, please let me know.
Thanks!

I had my levels checked last year, and my ferritin was sitting around 250. After two rounds of bloodletting, it dropped down to about 125. My doctor told me at the time that it looked good and there was no need to chase lower numbers. I’ve been monitoring my ferritin since then, and it’s slowly creeping back up. I have another checkup coming up soon, and once it crosses that upper limit of 150, I’ll probably be headed back for another session...

dustytinker91 — iron levels can fluctuate wildly even within a single day. Ferritin is a much more reliable indicator. Your levels aren't actually that high; honestly, after a few sessions, you might find yourself landing right within the normal range. If you happen to be in Chicago or heading over to Northwestern Memorial, maybe we could grab a coffee sometime🙂

Ethan Jones2 — the best move is to stay away from red meat and organ meats. Everything else is fine in moderation. You should pay extra attention to fruits and vegetables because they contain non-heme iron, which the body has a harder time absorbing. For people like us, the "dangerous" stuff is the heme iron found in meat because it absorbs so easily. Don't take Vitamin C with your meals since it boosts iron absorption, and watch out for those processed cereals that often have added iron. Also, dairy products and tea actually inhibit iron absorption, so it's actually a good idea to consume them alongside meals. You can't "cure" this through diet alone; we can only slow down the accumulation process...

I’ve finally wrapped up most of my research, and now I’m just waiting to start the phlebotomy sessions. We’re looking at 350 ml once a month to start. My doctor wants to monitor how my ferritin levels respond to that...
I read somewhere that these procedures usually happen in a specialized hematology clinic, but I was over at Mount Sinai yesterday to finalize things, and my gastroenterologist pointed me toward the main building. He mentioned I’d need to coordinate the blood draws down in the transfusion medicine department—it sounded like some sort of basement level facility. I’m not entirely sure why they have it set up that way. I didn't get a chance to ask because the waiting room was absolutely packed, and I didn't want to hold up the staff...
Thanks!

thanks for the reply.

Thanks for getting back to me.
I didn't sign anything. 🤷
I'm just wondering how much time we're looking at after the biopsy—in terms of days or hours?—where there's still a risk of complications popping up.
Thanks.

😢
Nobody here has actually gone through a biopsy before, so we’re all basically flying blind...

I was at the hospital the other day getting some bloodwork done and a liver biopsy.
They performed the biopsy around 3 PM, but they had already sent me home the previous morning. In the meantime, they did two finger-prick blood tests—not entirely sure what those were specifically for—and checked my blood pressure a couple of times.
Is there any real chance of complications following a biopsy like this? Any specific red flags I should be looking out for to know if something isn't right...
Thanks!

I don't have a cold, I’m just a little bit hoarse. 🤷
I first noticed those lumps—or whatever they actually are—about four days ago. They’ve been bothering me ever since; there's this constant sense of pressure and a dull ache in the area.
Thanks.

I’m honestly having a hard time putting this into words properly.
So, I have this ear 🙂, and there's the bone right behind it, then the indentation at the base of the ear... from that hollow part, running diagonally down along the jawline, there are these two segments that feel quite firm to the touch. I wouldn't necessarily go as far as calling them lumps.😕
The hardness is what's bothering me; I can actually feel a sense of pressure in those areas. But what’s confusing is that it's happening on both sides—right under both ears, they're the exact same size and feel identical to the touch.

I tried searching for a similar thread, but came up empty.

For the last few days, I’ve been feeling this pressure right under both ears—specifically where the jawline ends, just below the earlobe area. If I touch it, it feels hard on both sides, and they seem to be about the same size. It isn't exactly an intense pain, more like a constant sense of pressure or fullness...
Are there any glands or lymph nodes located in that specific spot?
I'm starting to panic a little because I have no idea what this could be.
Thanks.

Ugh, I really don't have the energy for more doctor visits and endless testing. 🙂
Since I’m still in the middle of sorting out my recent diagnosis for hemochromatosis, I haven't even finished all those follow-ups, and now there's this on top of everything else. 🙄

Is it possible for localized urticaria to transition into a generalized breakout, where it suddenly starts popping up all over my body, or does it usually just stay confined to one spot? Also, can this thing actually clear up on its own without any intervention?
Thanks.

Nicholas Myers said:Dear Gary Ross6,

There is a specific variation known as localized cold urticaria where, as the name implies, the hives appear only on a particular part of the body. If cold testing is performed, the reaction occurs solely in that specific area rather than across the whole system.

To address your second point—yes, other conditions can present similarly, but typically those illnesses don't produce classic hives, but rather different types of rashes or skin changes.

In any case, a dermatologist needs to see the physical reaction to confirm a diagnosis.

Best regards. 🙂

Thank you so much for the response.

Thanks so much for the thorough breakdown.
My abdominal ultrasound supposedly came back normal.
ALT, AST, and GGT levels are all fine, though my bilirubin is running a little high.
I haven't had any other tests done yet.
Now I’m just waiting on an appointment with a gastroenterologist at Mayo Clinic. And we all know how long those wait times can be...
Thanks again.

This winter, I’ve started dealing with what I can only describe as a cold allergy.
Every time I step back inside from the outdoors—it even happened yesterday despite it being above freezing—about five to ten minutes later, just as my body starts to warm up, these incredibly itchy hives break out on my upper legs. Nowhere else. They usually clear up within 10 or 15 minutes.
Could this actually be Cholinergic Urticaria, or specifically a cold allergy, even if it's localized strictly to my legs rather than exposed areas like my face, neck, or hands? And why would it target the upper thighs specifically? Is there any chance this could be a symptom of something else entirely...
Thanks.

Thanks for getting back to me.

I have a few more questions on my mind.
Do I need to get a full blood panel done before every single phlebotomy session, or is it enough to just check specific markers like hemoglobin and ferritin? Also, how long does a typical draw actually take, what kind of side effects should I expect—like weakness or anything else—and is there any way to estimate how much my ferritin levels will drop per session?
Is Mayo Clinic not a good option?...

So, I was recently diagnosed with hemochromatosis—I'm a C282Y homozygote. My primary care physician handed me a referral for a gastroenterologist, so now I'm just sitting around waiting for that appointment to happen.
My ferritin came back at 250 during my last blood work (the standard range is usually 13-150).
I was wondering if anyone else here is dealing with a diagnosis of hemochromatosis, and specifically, which specialists you all see... is it typically a hematologist or a gastroenterologist?
Best,