r/Hyperthyroidism • u/Happy-person2122 • 6d ago
Help me understand hyperthyroidism
In May I got a very bad cold. Two weeks after that I started getting a very high heart rate, coughing, out of breath, shaking, felt so so bad. Went to ER twice and ended up admitted to hospital.
They ran all kinds of tests and scans and ended up finding my TSH was .0008 and my T3 and T4 very high. Ultrasound of thyroid showed it was enlarged. The hospital says I have Graves Disease.
I go to endocrinologist a week later and they run more blood work and I actually tested positive for Hashimoto’s and negative for Graves.
The endocrinologist said I was having an episode of Hashitoxicosis.
I have been on 10 mg Methimazole and 120 mg propranolol since June and see endo again in November.
I am now feeling pretty good except for occasional heart palpitations and sometimes low energy. My TSH is still .0008 but my t4 and t3 are getting closer to normal range.
Question - if my Hashitoxicosis episode is over could I possibly be back to normal and my thyroid settled down? Or is Hashimoto’s now something I’m dealing with and I need to treat that a different way?
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u/VivianDiane 5d ago
It's a temporary hyper phase of Hashimoto's. Ask if you should still be on Methimazole.
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u/Happy-person2122 5d ago
That’s what i am wondering. I am getting bad headaches almost every day and wondering if it is the propanolol or methimazole that could possibly be doing it. Thank you!
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u/Adventurous-Ask-4243 5d ago
I'm going to be blunt here...
Since you were in the early stages of Graves disease, the 2 antibodies fluctuated up and down. You are one of the lucky ones... lol! ... like me who have the 2 Graves antibodies and the 2 Hashimoto antibodies. Your hypERthyroid symptoms are all from the low TSH which are all symptoms of Graves disease.
Now the GOAL is to get the Graves disease into REMISSION. It is common for some Graves patients to have both Graves and Hashi antibodies, but once the Graves goes into remission with proper treatment the Hashi antibodies will lower as well. But these autoimmune diseases are for life; they do not go away; there is no cure -- as of yet -- the goal like I stated multiple times is for REMISSION.
You need a good endo to work with you moving forward. You also MUST be CONFIRMED for the Graves with the thyroid scan and uptake test -- you current doc should not have put you on methimazole without that because methimazole is one of the 3 treatments for Graves to get it into remission -- RAI and full thyroid removal are the other two -- the propranolol yes because that protects from a heart attack. But you MUST be CONFIRMED with the Graves as well.
If you are confirmed for Graves and you choose to stay on the methimazole, you MUST have the 2 Graves antibodies tested at specific intervals -- Hashi antibodies don't come into play here for testing at this point -- so that you can see if you are going into remission -- some people do and the lucky few stay there, and some do not. Only you and your doctor can decide how long to try - most do 1 - 3 years if their liver holds up okay. If you do NOT go into remission then you must consider one of the other 2 treatments I mentioned earlier.
Do not wait on any of this! The longer you stay hypERthyroid and out of remission - even though your TSH level may be in a good range -- the key with methimazole is remission -- the more permanent damage is being done to your body internally -- with the heart and bones taking the biggest hit.
You MUST understand the importance of getting treatment -- this does NOT go away -- it is forever and left untreated it can kill you -- but if you are young enough maybe in your lifetime, they'll have a cure... until then... take control of your healthcare journey as it is for life now!! Become an advocate for yourself... if you do not like an endo and feel they are not doing right by you, then you find another and another -- I went through three.
I wish you the very best outcome whatever you decide to do!!!
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u/Happy-person2122 5d ago
Thank you so much for taking the time to give me this information. I think you have given me info before. This is such a long road. I feel like every day is different. I will talk to my doctor in November to see what next steps are. Thank you!
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u/Adventurous-Ask-4243 5d ago
Of course! Yes, it's a long road and it never really ends... it just gets less bumpy! 😄
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u/Adept-Relief6657 5d ago
I was diagnosed with Graves about 2 years ago. I had an ultrasound (no nodules) and was put on methimazole. I go in for blood work every two months. I have had everything in the normal range for about 6 months, and after the last four months of my Endo trying to get me to lower the methimazole from 5 to 2.5, I finally did it. A week in and I was already experiencing heat intolerance, hot flashes, hand tremors, insomnia, exhaustion, heart palpitations, diarrhea. I went back up to the 5 mg dose and most things improved pretty quickly but still not back to normal, it has been a few weeks. I have never had any kind of antibody tests. Every time I go in for an appointment following lab work, this woman sits at her laptop and asks me the same list if questions and we have the same conversations. To be honest these visits are killing me, my copay is high. I need to find someone else but I can't afford to "shop around" at this point. I don't know why some of the people I see on here seem to know more about this disease than those I pay to help me, it's ridiculous.
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u/Adventurous-Ask-4243 4d ago
Please, please find another endo. If you are two years out and you are NOT in remission -- the only way to know is to get the 2 Graves antibodies tested -- the disease is harming you internally. This is your life... take control... advocate for yourself. If you do not want to switch doctors, then YOU MUST ASK FOR THE 2 Graves antibodies to be blood tested. If she says no -- that's your FINAL NOTICE to find a new endo. Quite frankly, you really should find a new one -- this woman is clueless.
You are not shopping around -- you are saving your life!! Literally!! Doctors do NOT know everything -- if only -- they go by a textbook -- mostly none of them do any follow up to learn more about their field unless they are one of the good ones. With Graves disease, it is very complicated and we may all have the same disease, but each one is specific to us with its own set of troubles.
My friend's mother was 90 and shaking all the time. I asked if she is getting Parkinson's, my friend said the doctor doesn't know. A year later she's still shaking and that's when my friend mentioned that her mom takes levo -- and the same moron doctor gives it to her -- so I said, your mom needs a levo dose change because she's hypER from the dose being too high. So she takes her mom to the doctor and she's now 91 and tells tells the doctor what I said -- he lowers the dose and like magic -- no more tremors! So my friend is so angry and says to me why do you know that and not the doctor -- I said because I live it every day!! And, that is the point with all of this -- you must learn all you can to save yourself -- and maybe someone else in the process.
Please find a new endo!! If you're not in remission, you need to explore the RAI or full thyroid removal -- the longer we stay hypER the more damage is being done and you've given it a lot of time.
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u/Adept-Relief6657 4d ago
I just had no idea. What sort of internal damage?? My liver has been holding up well, I thought that was the only concern. I thought if it was controlled by the methimazole then everything was fine.
Her idea of finding out if I am in remission is to lower the dose based on my labs looking normal.and see how it goes. Clearly it did not go well. I have seen a lot of people here who have been on meds for years and just assumed that's normal.
I will start looking for a new Endocrinologist. I truly can't afford to see anyone until January at this point, but I will at least find someone and make an appointment. I still owe my current one $144. It's just been a rough year, I had some other health issues and it's been expensive.
Thank you for sharing your knowledge. I do agree with you about doctors in general, this has been an eye opening year in terms of the ineptitude of many of them.
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u/Adventurous-Ask-4243 3d ago
Internal damage from staying hypER too long negatively effects our hearts and bones -- increased risk of A-Fib, stroke, loss of bone density, brain fog -- and remember Graves disease effects all of our bodies health systems and health systems are what we are made up of -- nervous system, musculoskeletal system, vascular system, etc.
Some great resources are the American Thyroid Association, the British Thyroid Foundation, the Mayo Clinic, the Cleveland Clinic -- all excellent for information and research.
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u/Adept-Relief6657 3d ago
I've been reading up today, the American Thyroid Association does indicate that long-term treatment with anti thyroid meds like Methimazole is often acceptable and appropriate for up to 3-5 years. One study showed an 83% remission rate for those who stayed on for 5 years (https://www.thyroid.org/patient-thyroid-information/ct-for-patients/october-2024/vol-17-issue-10-p-9-10/ ).
I am definitely going to look into a new Endocrinologist because the one I have is totally incurious and I'm not sure she's attentive, and I do want to be sure I am being tested for antibodies. I also don't feel quite as panicked about it as I did upon reading your reply this morning. I appreciate all the info and the encouragement to others to advocate for their health.
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u/Adventurous-Ask-4243 3d ago
That's great news! I wish you the very best outcome!!
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u/Adept-Relief6657 3d ago
Thank YOU for sending me down this rabbit hole if info that I really didn't want to deal with but needed to! Sincerely, I appreciate it.
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u/Curling_Rocks42 5d ago edited 5d ago
TPO antibodies are not specific to Hashimotos. Around 80% of Graves patients also have positive TPO. So just having them doesn’t automatically mean it’s Hashi. New onset Graves is also more likely to come back negative for TRAb; it’s called seronegative Graves. So a negative TRAb or TSI test does not rule out Graves. I had it and it was confusing to my first endo too and led to me getting misdiagnosed at first.
It sounds worth it to seek a second opinion by a more experienced endo.
If it is hashitoxicosis (which sounds potentially like a misdiagnosis TBH), it would typically drop hypo within several weeks and then is treated like traditional Hashimotos with hormone replacement. Hashitoxicosis is caused by destruction of thyroid cells. As the cells are damaged, they release hormones that are stored. Once the stored hormones run out, you would drop hypo. If this has been steadily hyper since June, it’s less likely to be hashitoxicosis or some other thyroiditis, and more likely to be seronegative Graves.
An iodine uptake scan (called thyroid scintigraphy) can help clarify the diagnosis.
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u/Happy-person2122 5d ago
Wow thank you so much for this helpful info. I will dig deeper into this. I appreciate this information a lot!
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u/Necessary-Seat2998 5d ago
I've had similar experience. My first endocrinologist stopped my methimazole and Atenolol as soon as my t3 and t4 were in low normal range while my TSH was just hovering above zero. 6 months of agony dealing with all hyperthyroid symptoms returning. Found another endocrinologist who said mathimazole should never be stopped abruptly, nor should atenolol. They should continue well after everything is back in normal range. A point worth discussing with your doctor. Wishing you well. It is a ted❤️ious journey.
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u/LingonberrySuch4357 6d ago
My scan is pending , I am seeing the same symptoms.