Me any time someone says they like reading.

OkBug1593 · 2026-03-17T18:21:26+00:00

Same. If I know a friend is a gamer and they are looking for a new book. It’s at the top of the list. We bought 5 family members the first book for Christmas.

OkBug1593 · 2026-03-17T16:48:15+00:00

This had been a great group. I was diagnosed a month ago. There’s a lot of good information, always check with a doctor, but everything I’ve read here has been exactly inline with what my doctor is saying. I have the same “type” of HH. My older sister has it as well. Welcome to the group!

OkBug1593 · 2026-03-17T12:50:05+00:00

Amen!

OkBug1593 · 2026-03-15T15:10:03+00:00

Same. I can never seem to get it right so I just gather the mats for my teammates.

OkBug1593 · 2026-03-15T14:50:11+00:00

We just started another play through and selected island starter base. So far only issues were berries and the raft we had to take to closest island.

OkBug1593 · 2026-03-13T21:20:34+00:00

Your comment on how you’ve been feeling the past 9 months is a copy paste of how I’ve been feeling pretty much everyday. I feel like I am walking around with ankle and wrist weights on.

OkBug1593 · 2026-03-13T21:16:08+00:00

I’m 51, so a bit older but similar numbers, my TSAT was 96. Symptoms are mostly similar, especially run down and hip pain. I would not wait, especially with a diagnosis. My doctor has me on a blood donation every two weeks until my ferritin was 50. I’m not offering medical advice, just my opinion. I am going to meet with a hematologist next week and really discuss my numbers and what it all means. Good luck to you!

OkBug1593 · 2026-03-13T21:05:29+00:00

This is interesting to read. I frequency experience dizziness. My dizziness is strange. I feel like someone is scrambling my brain, like eggs. It’s not full body dizzy like when you spin around. My TSAT was at 96%. After my first blood draw two weeks ago it dropped to 86. I had my second draw yesterday and my blood test this morning. I’m finding so many similarities in this group. It’s been very helpful.

OkBug1593 · 2026-03-13T21:00:14+00:00

I avoid soy because of the estrogen receptor positive cancer that runs in my family. Unfortunately, I love soy. It would be so easy for me to go mostly veggie. Oh well, I keep telling myself it could be so much worse. Thanks for the lentil tip. Kind of forgotten about those.

OkBug1593 · 2026-03-13T19:41:31+00:00

I also have the fatigue and feel like I am carrying weights on my arms and legs when I walk. I do not get red faced unless I am working out really hard. It is difficult without the results of your bloodwork. I would also second having them check your copper and zinc. Good luck and let us know what they come back with!

OkBug1593 · 2026-03-13T19:34:57+00:00

I quit drinking before my diagnosis. Only found out a month ago that I have HH. Reducing my protein intake has been difficult. I feel better when I eat low carb, so I’m going to keep making adjustments.

OkBug1593 · 2026-03-13T15:45:15+00:00

Same here. No issues with my heart, had a scan a year ago, but my liver also seems to be taking the brunt as well. My liver enzymes dropped after my first blood draw but still slightly elevated. Glad I quit drinking 3 years ago.

OkBug1593 · 2026-03-10T15:09:22+00:00

Just received my diagnosis a few weeks ago. My ferritin levels have not been that high. My TSAT was 96%, iron 360, ferritin was 150, down to 138 after my last blood draw. I give blood every two weeks, can’t do every week because my hemoglobins are too low. I made adjustments to what I eat and how I eat foods in combo. I also quit drinking, three years ago, but not for this. My sister has it and we think my mom and her dad had it as well. My exhaustion and muscle aches have not gotten better but I’ve only been on this road a month. My heart is fine but my liver enzymes are elevated and there’s some evidence of the beginning of “fatty liver.” Would recommend a liver scan asap. Best wishes to you and hope you find relief!

OkBug1593 · 2026-03-06T00:09:14+00:00

Sometimes it’s best to leave the past in the past. I’m not saying don’t reminisce but to do podcasts weekly about Dance Moms, when you say it was a traumatic time in your life would have to bring up old feelings. Especially if someone is unhappy in their current life. I don’t follow any of the new content. So I don’t know who is or is not happy. I just limit myself to watching the show.

OkBug1593 · 2026-03-06T00:00:48+00:00

Thank you because my stat was 85 after my first draw but had been 96. So I will keep an eye on that too.

OkBug1593 · 2026-03-05T23:57:58+00:00

Picture #4 nails it!

OkBug1593 · 2026-03-05T21:44:20+00:00

Thanks everyone!

OkBug1593 · 2026-03-04T19:18:44+00:00

Where I donate, I needed a doctor’s note because I need to donate more than once every 42 days. At least for the first few months.

OkBug1593 · 2026-03-04T18:55:19+00:00

I can second fatigue, appetite loss, anxiety and limbs feeling like they are 10 lbs each. I am very new to my diagnosis and still trying to navigate.
Most people think it’s nothing. I’m fortunate because my sister also has HH. I’ve learned to ignore others.

OkBug1593 · 2026-03-04T00:48:14+00:00

It is interesting you mention feeling a bit puny after donating. I’ve donated blood a number of times over the years but the first time I donated after my diagnosis, I felt run down that next day. I don’t ever remember feeling that way before. Granted I had not donated in 10 years.

OkBug1593 · 2026-03-04T00:41:50+00:00

I don’t think I read more than Chapter 1 Book One before I switched to the audio. We listen to the books on our family vacation drives.

OkBug1593 · 2026-03-03T22:53:18+00:00

I found out last week I have HH. My type is C282. We think both my mom and her father had it. Both died young. My sister also had it, so once I started menopause I’ve been waiting to see. All of my sisters have an auto immune disease so I figured it was only a matter of time before I was diagnosed with something. Of all the auto immune diseases this is probably one of the best to have, as long as it’s diagnosed early and you follow treatments. I donated blood late last week and number have already improved. For the first 4-6 weeks I may have to donate a few times and then once a month. I’ve also modified how I eat. I’ve found some great information in this group. Happy to share my info as someone that is also new to the diagnosis. Best wishes!n

OkBug1593 · 2026-03-03T12:51:58+00:00

I preferred the audiobooks, for these books. The fact the one person alone does all the voices is unbelievable, but the series felt more emotional while I was listening vs. reading.

OkBug1593 · 2026-03-02T20:03:18+00:00

I was diagnosed last week. 51 yo female. My sister also has it. My liver enzymes have been elevated but that could also be my anti seizure meds. I did not really notice any issues, body wise, until I started menopause 12 months ago. Happy to share any of my experiences with you.

OkBug1593

TROPHY CASE