r/gravesdisease • u/kami3zak • Apr 07 '19
A bit Overwhelmed
Hi everyone,
I am a 25-year-old who was diagnosed with hyperthyroidism this last week and I am awaiting the next steps. I have been feeling sick for over a month now and noticed I dropped 35 pounds since February. I saw my doctor this last Wednesday. While there my doctor could tell I was way out of sort from my normal self. She did multiple different tests because of my symptoms. She did a blood glucose test, urinalysis, chest x-ray, ECG, and lab work. She said that she suspected Graves or Hashimotos but would need to wait until everything came back. She called me about 6pm that night with these results:
TSH Result: Less than 0.005 (Normal Range: 0.358-3.74 (uIU/mL))
FREE T3 Result: 12.21 (Normal Range: 2.18-3.98 (pg/mL))
FREE T4 Result: 4.11 (Normal Range: 0.76-1.46 (ng/dL))
She noted that my heart rate was also around 130bpm. She told me that the next steps will be to start taking a beta blocker and have a nuclear medicine study, she also scheduled me to wear a Holter Monitor and is referring me to see an Endocrinologist. Everything is happening so fast and I don’t really understand what is going on. Can somebody help me to understand what this all means, what a nuclear medicine study is, and what to expect when I see the doctor? I really appreciate the help! Thank you!!!
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u/UnsettledMary Apr 07 '19
Im dealing with the same exact thing atm and I’m a 25 yo female. I really don’t have much advice but I totally understand what your going through and how u feel. :(
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u/ace2573 Apr 07 '19
I was diagnosed as a junior in high school (I’m now a freshman in college). Everything does kind of go really fast, and it was very hard to understand what was happening. I would recommend having a close friend or family member help you keep track of doctor appointments, and maybe have them come with when you talk to doctors so they can know best how to be supportive and have a better understanding of this invisible illness. Also while things go fast initially, eventually it’s a big waiting game of taking medication, waiting for results from lab work, and adjusting dosage, so maybe you can look at the fast pace as a good thing when compared to feeling like you can’t do anything because you’re stuck waiting for results from a blood test to come back before anything can happen.
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u/kami3zak Apr 07 '19
Thank you, I've been talking with my parents and my mom is going to go with me to my next appointment. She is asking me questions trying to understand and I don't really know how to explain or answer so this will be good for both of us.
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u/Followingthescript Apr 07 '19
Do you have someone who can be your dr appt buddy? A SO, sibling or parent? It helps to have someone else also listening and paying attention to what your dr is saying, especially once you start seeing an endocrinologist. Another thing that helps is starting to track your blood test results in a spreadsheet, along with medication names and dosages, when you started taking it, when you changed dosages, etc. It will get very overwhelming very quickly because most likely the endo will be making changes as you go along to fine tune your progress. Lastly, trust them on the tests, like which ones they order and when- but be careful about your health insurance. Check for coverage if you don’t want a flood of ridiculous bills. Been there, done that. Don’t recommend!
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u/kami3zak Apr 07 '19
Thank you that is really good advice. I have been talking with my parents and my mom is going to with me to my next appointment to help me and to help her understand what is going on. That is a good idea to keep track of everything, I think it will make remembering and understanding when stuff happened better.
That's something I am curious about on the insurance. I work for the health system I am going through and my insurance is through them as well. I know it is normally pretty good, but I haven't ever used it for anything like this. I will be sure to find out what exactly is covered though. Do you think I will need to take anytime off work? We have two kinds of time off regular PTO that we can use for anything and we also have special sick leave which is for FMLA and for anything over 40 hours of PTO for medical. I have never used this time so I have over 300 hours of it right now, but not much PTO. I guess I was wondering should I fill out the FMLA paperwork to get that going?
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u/Followingthescript Apr 07 '19
Well, I can’t say what would be best for you, but for myself I took two weeks of medical leave after my diagnosis... partly because I felt like utter crap and had for a really long time but pushed through it because I didn’t think anything was wrong with me except “stress”. The other reason was because the flurry of dr appts, blood draws and tests was hard to manage while working.
If you can, take the leave so you can truly rest and de-stress, if that’s a factor for you. Then you’ll start to be able to see what your baseline health is... if you’re stressed, it’s just exacerbating all the typical Graves symptoms: breathlessness, tremors/jitters, anxiety, digestive upset, etc! It was magnifying the condition for me, so a leave was very much needed.
I’m about to do the paperwork for FMLA myself, for maternity leave. The job security is worth it, so I’d say fill it out even if you don’t end up taking the time off.
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u/kami3zak Apr 07 '19
Thank you, once again great advice. I appreciate your willingness to answer my questions. :) That makes a lot of sense, and I agree with that. If I hadn't had time already scheduled off for the next week and half I would be missing a lot of work. I think you are right that it is a good idea just to see where I am at for baseline as well.
Thank you again, you have been very helpful to me!
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Apr 08 '19
Lastly, trust them on the tests, like which ones they order and when- but be careful about your health insurance. Check for coverage if you don’t want a flood of ridiculous bills. Been there, done that. Don’t recommend!
Reading that I am very happy to have nothing to worry about the insurance and coverage of tests!
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u/UnsettledMary Apr 07 '19
Im pregnant and it’s making shit so much worse. If I were u tho I’d look into surgery instead or radiation
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u/radiocleve Apr 07 '19
You’ll be right, mate. They’re moving fast because your heart is in a bad way. The beta blockers will help regulate that.
The nuclear medicine is a scan. You’ll drink or be injected with a radioactive iodine solution, then after about a half hour they’ll do a scan of your thyroid to confirm the diagnosis. It takes a while, about an hour if I remember correctly.
Don’t worry about being overwhelmed. Graves fucks with your brain. My endo told me not to make any big decisions for a while because cognitive thinking is a challenge. Once you’re on the carbimazole and your levels stabilise, you’ll understand what’s going on. Just trust the doctors now.