u/Commercial_Classic_8

Hi everyone!

I was just diagnosed last week and have to have a cardiac and abdominal MRI to search for iron deposits in my organs. I am terrified. I’ve had a neuro MRI before but i was young and didn’t have all of the anxiety that I have now!!

Is anyone able to share their experience with the cardiac mri specifically? Were you claustrophobic? How did the contrast affect you? Any side effects from it? How far into the machine were you? I am just such a nervous person and I am trying to be calm about it but I think hearing other’s experiences will help me settle down a bit.

Thank you!

Hi girls 🌸

I work in an operating room and when we have no cases to do, I just sit around. Wondering if anyone has any cozy mobile games for iPhone that could be fun to help pass the time? Thanks!!

Hi everyone, I’m new around here.

For the last 6 years I (29F) have been feeling rotten with dizziness, fainting or near fainting, shakiness, fatigue, insane brain fog, joint soreness, heat intolerance, and headaches almost daily. I’ve seen cardiologist who diagnosed me with Dysautonomia and gave me a few treatment options, all of which help very inconsistently. Long story short, i had been feeling terrible for the past week and had to leave my vacation early because of it. On Friday during one of these “flare ups” i went to urgent care sure that I had low iron or that i was deficient in some vitamin or mineral. I was shocked when my labs came back reflecting this:

TIBC 213 (low)
UIBC 33 (very low)
Iron 180 (high)
Iron saturation 87% (critically high)
Ferritin 71 (normal)

(These were not fasting, however I had nothing to eat or drink within 5 hours of this blood draw)

Anyways, since i was at urgent care the doctor didn’t really know how to treat and said I need to urgently follow up with hematology. She assumed from the iron saturation that i have HH, but said i would need genetic testing to confirm. I have not been formally diagnosed with HH, however both of my parents have majority Irish heritage, and looking at my labs knowing that I don’t take any iron supplements or vitamin C supplements, i hardly eat meat, let alone red meat, and i don’t overload with spinach or other high iron foods, that I wouldn’t be surprised if this is HH. I am still waiting on seeing the hematologist to confirm.

My question to you all is: do any of you who have HH suffer from my aforementioned symptoms? The heat intolerance, frequent headaches/migraines, dizziness, syncope, etc?? I have been dealing with these symptoms for years, and it’s taken over my life completely. I am almost hoping for a formal diagnosis with SOMETHING just to have an answer and feel a little bit better. I would love to be able to live life again feeling GOOD.

Also, any insight from the labs? Can you even have HH with a high iron saturation/ high iron and a normal Ferratin?

Thank you for time and any insights

Hi everyone. I’m looking for support or help or tips with new things to try. I’m at my wits end with this condition.

I have had dysautonomia symptoms for the past 6 years but was only officially diagnosed this past year. I have VVS and OH… i also have a sneaking suspicion that i also have hEDS, but that has not been confirmed. The doctor who diagnosed me put me on propranolol, which made me so sleepy that I couldn’t function at work, so he told me to stop. He did tell me to try to stay cool, wear compression socks, drink electrolytes and plenty of water. Usually this helps me, but sometimes, my symptoms get so far ahead of me that I cannot get ahead of them.

When i look back and think about how much of my young adult life that I have lost to dealing with this condition i genuinely get depressed. I want to be able to walk my dog on a summer morning without having to think about how much fluid I’ve had to drink and whether or not i have had electrolytes and food yet. I want to be able to sit on the beach and enjoy the sun without fainting. I can’t drink regular coffee anymore— which is terrible for me because i absolutely adore coffee— because of the caffeine, and I can’t enjoy a drink at a bar with my friends because the next day my symptoms will be so far gone that I won’t be able to get a handle on them. I want my old life back when I had energy and was able to live without worrying about these symptoms.

The summers are the worst time for me now, which is sad because I used to spend my entire summers outside. I am on vacation with my family right now, and I can’t even sit on the beach with them. I also feel so sad that they have to spend their time asking if I am ok or worrying about how they can help me when they are on vacation. They are so supportive but i still feel awful about it.

I guess i am looking for anything else that has helped you that I am not trying. I am really routine with everything that I do, so when symptoms start and i cant get control of them, i don’t know what to do. Any advice?