Hyperthyroid and Graves New member
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Greetings everyone. I am new to the Hyperthyroid game. My story....in 2010 I woke up one day out of the blue with that "over-caffeinated" feeling, tremors in hands and legs. along with nausea, focus issues, intense but very short bouts of dizziness lasting a few seconds, generally not feeling well. Over the course of about 8 weeks I lost 30 pounds.
I saw every specialist you can imagine. Neuro, no problems. Gastro did upper GI scope and colonoscopy, no problems, Cardiologist did a cardiac catheterization after a false positive for blockage on a nuclear scan. No problem. ENT did Caloric test on ears to see if I had a vestibular issue, normal results. Blood work all came back normal. Slowly over time my symptoms subsided, and I felt generally fine....until this Spring.
In March 2022 I started having palpitations and exercise intolerance so saw my cardiologist who said they were benign palpitations. A check of my TSH revealed it was 1.1, T4 and T3 all smack in the middle range.
Fast forward to May 2022, I suddenly was waking up at 3 a.m. with the jitters and excessive urination on top of the other symptoms. Just dealt with it really.
By June, anxiety started showing up (and I am not an anxious person at all, so I knew something else was going on). Continued with all other symptoms and also added night sweats, especially my legs. I was also waking up with the shakes in the middle of the night.
By July, I was on Lexapro 10mg to deal with the anxiety as well as 25mg metoprolol for palpitations. The Lexapro has helped. On July 24th, I decided to go to ER because I just knew something was wrong. Asked them to check thyroid so they did a TSH only. Came back at .0407, and they said "i think we found your issue".
Now here in August, I am on 10mg methimazole daily, had a nuclear iodine uptake scan that said 7% at 6hrs and 17% at 24hrs. Saw a very experienced Endo who said that the scan is normal with a normal thyroid. He indicated that because my TSH is so low, my thyroid shoutl NOT have uptake any of the iodine or very very little. He said based on that, the result is abnormal and suggests Graves Disease. I have a ultrasound scheduled for Sept 7th. My TSH on July 27th was .365 and on August 17 was .240 (right after I started methimazole). T3 was a .90 and T4 was a .94. I did have a TrAb done, and it was <1.00. I asked Endo if that ruled out Graves, and he said no, that some don't have the antibody. He still believes it is Graves.
I do have family history of thyroid disorder. Both my grandfather on mom's side and mom had theirs removed, and my 18yr old already has nodules that are being monitored by an endo.
Methimazole is helping me alot I believe. I still have tremors, night sweats, and some general unwellness feelings, but not near what it was.
so that's my story....so far. More bloodwork to check levels Sept 14th.
Paul
1 like, 1 reply
dan73 HyperPaul
Edited
Hello HyperPaul, just read your post and it reminded me very much of my struggle with Graves' disease.
My first episode of hyperthyroidism, 25 years ago, was missed even though I presented to my GP with the textbook hyper symptoms (weight loss, constant hunger, nervousness, elevated heart rate).
My second episode, 9 years ago, was much worse due to the muscle pain that comes with thyrotoxic myopathy. The pounding of the heart would make it difficult to sleep even though I was completely exhausted. I would wake up at 3 am like clockwork. Btw, the output of thyroid stimulating hormone (TSH) is connected to the circadian rhythm and in healthy people the maximum occurs around 3 am while the minimum occurs around 3 pm.
After a brief consultation, my GP at that time ordered a thyroid function test which showed that my thyoxine level and my thyroid stimulating auto-antibodies were more than 3x the normal upper limit. I responded well to the treatment with the anti-thyroid drug Carbimazole. I was initially prescribed a high dose which was then tapered to a very low dose that I had to take for over a year.
This was followed by an episode of remission. After about 2 years, I noticed that I am getting hyperthyroid again. This time around, treatment was started right away and I recovered quickly. During every follow-up visit with my endocrinologist I was told to consider a final solution (for example thyroid ablation with radioactive iodine). I was reluctant to do that since it most likely meant trading episodes of hyperthyroidism with permanent hypothyroidism and the requirement of taking oral thyroxine supplements for the rest of my life.
Fast forward to the present and I am doing well. I did not need anti thyroid drugs for the last few years. I was discharged from the care of the endocrinologist with the instruction of having yearly thyroid function tests. Since I noticed that the onset of every period of hyperthyroidism occurred in winter or early spring I started to take Vitamin D supplements.
Thank you for sharing your story and I hope you are doing well.