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#1 Aug. 23, 2016 20:24:45

geckomama
Registered: 2016-08-23
Posts: 2
Profile  

Newly Diagnosed and not doing well

Hello all,

I was diagnosed with Graves disease around 3 weeks ago. I came in for a routine physical to find that my thyroid was massive and that my T3 & T4 levels were EXTREMELY high. I'm good at ignoring symptoms, and I think I've been ill for 1-2 years without treatment. I'm pretty young (only 22) and just started an extremely difficult graduate school program–with strict absence policies and even more so, it's very destructive to my personal success to have to miss class (which this condition has already required for me to do multiple times). The shaking makes it 10 times more difficult to practice my surgical techniques and I am in constant fear of developing eye problems which may end my career. On top of that, I had a very unpleasant experience with a rude, rushed endocrinologist who was completely disinterested in answering my questions–and began talking surgery before I could even get an explanation of my condition. Therefore, I am moving endocrinologists, but with a severely progressed condition, it is tedious and feels risky. I also cannot shake off the idea of thyroid cancer, even though the ultrasound detected no suspicious nodules and swollen lymph nodes in my neck have been inspected multiple times.

I clearly feel that heart rate and thyroid swelling are improving with medical treatment. But simply put, I am incredibly depressed. I'm finding that coping with the permanence of this condition as well as constant pressure to pursue procedures that I'm not ready for is absolutely crushing–and is detracting from what should be the best time of my life! I am only two weeks into school and I have considered dropping out (I've worked for this my entire life) because I'm not coping well. Does anyone have suggestions for keeping positive? How long did it take before things got better?

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#2 Aug. 24, 2016 10:18:16

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4182
Profile  

Newly Diagnosed and not doing well

Hello and welcome - Hopefully, others will chime in, as each person's journey is unique, but I started feeling better at around the 8 week mark. Antithyroid medications start working right away to block the production of new hormone, but it can take several weeks for your body to burn off its existing excess stores.

Keep in mind that things *will* get better - and remember that when it comes to treatment options, *you* are the customer! In some cases, your doctor might recommend (or tell you to avoid) one particular treatment option, but the vast majority of patients are able to make a personal choice between all three options: antithyroid meds, surgery, and RAI.

If you are in the USA, talk to a school counselor about the Individuals With Disabilities Education Act. You should be able to work out an Individualized Education Plan that allows you to continue with your studies while your levels stabilize.

Take care - and keep us posted!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Aug. 24, 2016 23:39:20

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 148
Profile  

Newly Diagnosed and not doing well

You mention that your heart rate and swelling are improving with treatment. Are you taking methimazole now? After I started on methimazole, I was starting to feel better after only a few weeks. I had several symptoms (tremors, weight loss, weakness, eyelid retraction, etc.) but the most challenging one for me was the anxiety and heightened emotions.

I was diagnosed almost five years ago after having experienced symptoms for about a year. Even though my symptoms cleared up relatively quickly, it took longer for me to become euthyroid. I was on methimazole for four years, and last year they found a large tumor. It had gone unnoticed because I'd gained back all the weight I'd lost while hyperthyroid (some of it in my neck) and the nodule was growing at the bottom of my left lobe and extended past my collar bone, so it was well hidden.

I had a total thyroidectomy nine months ago, and pathology determined that my tumor was benign - a Hurthle Cell Adenoma. I started on levothyroxine a week later. I've been on the same dose of levothyroxine until recently. Over the summer, I got a blood test that showed I had become hyperthyroid. I was starting to really feel the symptoms when I finally got in to see my endocrinologist, and she lowered my dose.

Here's an excerpt from my post to facebook on the day of my endo appointment, explaining how and why I felt so bad. (Note - I also had a migraine that day).

“…Migraines can be triggered by the type of weather that we've had for the last three days. Also, hyperthyroidism can make you feel anxious and depressed, so even the smallest annoyances piss you off and big annoyances make you want to cry. Every obstacle seems insurmountable. For example, yesterday when the plumber was having trouble getting my drains unclogged (tree roots) it seemed to me that my best course of action would be to put all my belongings in storage and burn down my house.

This was written just two weeks ago. Now I'm reading it, and it's hard to believe I felt this way. I feel so much better now after just a little reduction in my medication. The idea of burning down my house is ridiculous now, but I felt so trapped and hopeless at the time.

I think that, with a little time, you'll look back and won't believe that you actually considered dropping out of school. Just hang on - things will get better soon.

Because of my near-cancer experience, I've done a lot of reading online about it. The first thing you need to keep in mind is that 95% of nodules are not cancer. I've read this statistic again and again, even though some of the other things I've read seem to contradict each other. (Some of the info may have been out of date). When I was first diagnosed, I had a thyroid uptake and scan, and there was definitely no nodule back then. I know that I must have had it for at least a year, though, because I found a photo that shows it. The photo was taken a year before my nodule was found, but it's only visible because I was leaning over.

If you're truly concerned about cancer, then thyroidectomy may be something you should consider after the methimazole has a chance to clear your head. I was very happy with mine. Recovery took a couple of weeks and I didn't need to go into isolation (as is required with RAI). I think that one levothyroxine dosage adjustment in 9 months is pretty good. You would just need to make sure you find a really good surgeon.



Edited emmtee (Aug. 24, 2016 23:43:28)

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#4 Aug. 25, 2016 10:27:15

Liz1967
Registered: 2014-02-25
Posts: 297
Profile  

Newly Diagnosed and not doing well

I had a total thyroidectomy nearly three years ago and am so happy I did. No worries about thyroid cancer, thyroid storm, becoming way hyper or way hypo. Takes a bit to fine tune your Synthroid, but no big swings in your labs and the symptoms associated with those swings go away. Lots of people out there with no thyroid, think Brooke Burke Charvet or Sofia Vergara, two famous women who are doing fine. Does not matter if you have thyroid removed because of cancer or Graves, treatment and results are the same. Graves antibodies attack thyroid and eye muscles. Once thyroid removed, cannot attack thyroid or affect hormone replacement, and seems to be some research suggesting less likely to attack eyes if all of thyroid gone. I had surgery on Friday, was out shopping on Monday. So plan on a week off school and then some months of feeling slightly off until you get your replacement hormones just right, but it should be close right away. All the bad symptoms stopped immediately post surgery. I feel totally normal, exactly as I did before Graves diagnosis. You take a pill every morning, get labs once a year, that is pretty much it.

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#5 Aug. 25, 2016 14:38:17

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

Newly Diagnosed and not doing well

I think you got some great replies in the above emails. And i agree with all if it!
Things DO get better, surgery is the answer I found. Never looked back, just take Synthroid, and check labs now and then.


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#6 Aug. 28, 2016 18:42:47

geckomama
Registered: 2016-08-23
Posts: 2
Profile  

Newly Diagnosed and not doing well

Hi all,

Thank you for the nice and detailed replies. Yes, I am on methimazole and propranolol. Unfortunately I have not been back to the endocrinologist because I have been switching to a new one (I was extremely displeased by my current endocrinologist, who was nothing sort of dismissive, rushed, and seriously set up a negative tone for this experience). The majority of my stress is based upon needing a professional to discuss with me my options and will work with me to decide on a method that is best for my lifestyle. But it is such an incredibly tedious process, especially while in grad school. And above all else, I am not coping with the permance of this condition. No matter what treatment I choose, there will always be something wrong with me and trying to hold me back. I am more depressed than I have ever been. I'm expressing these concerns to my boyfriend and family, but I honestly feel like I'm never going to get better! I'm trying to break free of my cynical nature and stress habits to improve my situation.

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#7 Aug. 29, 2016 12:52:55

Liz1967
Registered: 2014-02-25
Posts: 297
Profile  

Newly Diagnosed and not doing well

Thyroid levels do affect mood so you will hopefully feel better as your levels stabilize. Very few, if any, people do not have something wrong with them. Allergies, asthma, PMS, endometriosis, diabetes, migraines, joint pain, back pain, hypertension, anxiety, depression, obesity, addictions, skin diseases, cancer, seizures, fibromyalgia, sleep apnea, celiac disease, MS, glaucoma, etc. In my case, taking Synthroid once a day is easier than the migraines I have had my whole life. Yes, it is hard to get an unexpected diagnosis, no question, but you will get things adjusted and get on with your normal life.

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#8 May 17, 2020 14:02:25

Shmance21
Registered: 2020-05-16
Posts: 1
Profile  

Newly Diagnosed and not doing well

geckomama
Hi all,

Thank you for the nice and detailed replies. Yes, I am on methimazole and propranolol. Unfortunately I have not been back to the endocrinologist because I have been switching to a new one (I was extremely displeased by my current endocrinologist, who was nothing sort of dismissive, rushed, and seriously set up a negative tone for this experience). The majority of my stress is based upon needing a professional to discuss with me my options and will work with me to decide on a method that is best for my lifestyle. But it is such an incredibly tedious process, especially while in grad school. And above all else, I am not coping with the permance of this condition. No matter what treatment I choose, there will always be something wrong with me and trying to hold me back. I am more depressed than I have ever been. I'm expressing these concerns to my boyfriend and family, but I honestly feel like I'm never going to get better! I'm trying to break free of my cynical nature and stress habits to improve my situation.

Hi,

I know this is a pretty old thread with the last post being from 2016, so I'm not sure you'll even see this. I was just wondering how things turned out for you. I have a similar situation of being diagnosed at 25 years old while I'm in my final semester of grad school and trying to finish up my thesis. I've considered the option of delaying my graduation because of how exhausted and cloudy I've been, but I really want to try to power through as I am set to graduate in August. I have similar feelings and stress about being affected by this for the rest of my life. I was just hoping to see how things turned out for you since your situation sounded pretty similar to mine. Thanks!

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#9 May 20, 2020 18:39:53

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4182
Profile  

Newly Diagnosed and not doing well

Hello and welcome - You might also try the PM feature, as members don't always check back here once they are feeling better!

This article might be of interest - it was written by someone who is a Graves' patient herself, and also happens to be a teacher. It was written more for younger students, but some of the tips are good for students of all ages!

https://www.gdatf.org/about/about-graves-disease/patient-education/students-graves/

That's a tough call to push through or delay, especially since having thyroid levels out of balance can affect both energy levels and concentration. Do you have a faculty advisor that you can talk to?


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#10 July 27, 2020 19:04:34

Big_goit
Registered: 2020-07-11
Posts: 8
Profile  

Newly Diagnosed and not doing well

Hey I'm so sorry to hear you are suffering so much with this condition. Many, many fellow patients struggle with all the ups and downs of this condition. I have definitely been there. Just know that it is not uncommon to feel this way in the beginning because it is seriously overwhelming! But it will get better. Things will stabilize and you will have control over your life and your thyroid disease. It's rough in the beginning but for most people, this is the toughest part and it gets much much better. I'm glad you took action to get a different endocrinologist because that can make a huge difference. It's also been very helpful for me to see a counselor throughout my thyroid journey, one who understands the disease and can give some guidance through this crazy time in your life. The way you feel now, though completely valid and understandable, will not last forever! Good luck as you search for a treatment that works for you and as you progress in school! You can do it!

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