Does anyone on here have any experience with hyperthyroidism? I just got diagnosed last night (my TSH level was undetectable, T3 was >400 with a ULN of 180, FT4 was 4.3 with a ULN of 1.8) and my doctor has prescribed a beta blocker to help with my tachycardia, but beyond a list of symptoms and treatment options, I don’t really know much about what’s going on. I’d love to hear about other people’s experiences and would appreciate any tips or suggestions you might be able to offer. Thanks so much!
I was treated for Graves disease about six years ago.
I chose the radioactive iodine option. I know there is also a drug you can take to kill your thyroid but it had side effects and I didnt opt to do it. Be really careful in making your choice. Maybe there are even newer choices now, I dont know.
My thyroid function tends to be very wacky, which is common for people who did the iodine treatment.
There is all sorts of talk about how much testing your Endo should do, and how some settle for doing little lab work, which may result in you not feeling tip top. Visit About.com/Health/Thyroid and read up on the topic. Mary Shomon is my favorite author, and you’ll find some great help there.
I was on Synthroid for years, and recently went to a generic, which also may not have been a good idea. Last year my heart really was fluttering and racing, and after I finished a supply of pills for 90 days, it got better on the next batch. Mary would say dont buy generic thyroid meds, and she may be right.
I must say, the whole disease has been a challenge. My rheumatologist believes I have fibromyalgia as a result of all of this, and I suspect that may be true. I know if I had to do it all over again, I would do more research and weigh things out. However, as you know you can feel very poorly with hyper T symptoms and you cant wait too long to treat it.
Hope this helps in some way.
I was diagnosed with hyperthyroidism, Jackie, back in 1994, long before my diabetes diagnosis. For me, they tried to control my thyroid with meds but were unable to do that, so they destroyed it with radiation and I’ve taken Synthroid as thyroid replacement ever since. The easiest thing is of thyroid supression meds work for you to regulate the over active thyroid, but I’m not sure if that is common or not.
In general, when I was diagnosed I realized that my thyroid being out of whack had influenced tons of things in my life, both physical and emotional for a long time. So getting it under control was a very positive thing. Some people say negative things about Synthroid but I’ve had no problems at all with it. When I was diagnosed with diabetes my synthroid dose became too much for me and my thyroid levels became very hyper again. But since then, it has been quite stable and I just get thyroid checked about once a year to make sure.
Zoe do you notice seasonal fluctuations?
I seem to need more meds in the winter, less in the summer.
My one doctor creatively figured out that by taking six pills per week when I go a bit hyper, it works out just fine.
A lower dose didnt calculate the same to him as six pills (just set one a week aside) and lo and behold his idea worked for me. My endo said whatever…if it works do it.
I was diagnosed with hyperthyroidism and I was prescribed PTU treatment to slow down my thyroid and a beta blocker. I took PTU for 2 yrs before it went back to normal levels. Currently, I’m on Zero medicine for my thyroid. If you choose to take PTU you will need to see your Endo more often for him to check your levels. Choosing PTU has a small chance of not working.
No, I haven’t, Laura, but then where I’m currently living there isn’t a wide difference in temperature between seasons. I’m not sure I’d notice a difference if it were subtle. I usually only get checked once a year except when I freak out over not losing (or gaining) weight and decide my thyroid is to blame and ask for an extra test. It never is the reason. My dose hasn’t changed since after my diabetes diagnosis when my levels changed but that might also have been due to the weight I lost. It took me over a year to get my thyroid stabilized in the beginning, and hopefully Jackie’s won’t be that tempermental. I don’t remember hearing about a medication to destroy the thyroid, just thyroid supression medicine which didn’t work for me and so I had two doses of the radiation to kill the darn thing!
That’s probably what I meant.
Some drug that had a warning about watching for low blood cell counts as a possible side effect?
I told you I didnt research it! LOL
Jackie, it’s a pill. They go through major stuff to deliver it to you in a hospital room or exam room.
You do have to watch contact with other people as far as your eating utensils etc but unlike the folks I know who had thyroid cancer treatments, no isolation required.
Not a dumb question at all, Jackie. I had been having tests with some kind of a machine that moved over me and I expected the radiation would be something like that (yep, beams!). It was pretty anti-climatic when they handed me a pill, though I do remember being told of precautions especially regarding if I was pregnant. No sickness, no reactions.
It was quite awhile ago and I’m sure everyone is different, but the way I understood it was the first choice was to try and suppress the thyroid - to get it to stop overproducing. That was a medication they tried me on and I think it was about a year because it took awhile and they had to keep changing the dose. It would cut it down some but then it would increase again. So that is when they decided they couldn’t suppress and so had to destroy it completely and I would need to take replacement meds for my whole life. I don’t think there is any such thing as “killing 1/2 of it” but only the possibility of getting it to stop over-producing with suppression meds.
Sportster, is PTU the suppression medication? I can’t remember the name of what they used to try and suppress mine, but it didn’t work. They said my hyperactive thyroid was pretty far advanced when they diagnosed it because I didn’t have insurance and I just got used to how I felt. Also, I have to confess I loved the weight loss!
Yes Zoe, PTU is the suppression medication. My Endo told me that I was hyperthyroid for a very long time and I was lucky I didn’t have a heart attack from it. By the way, I was diagnosed with a hyperthyroid and Type I diabetes at the same time. I was sooooo skinny at that time I felt like the wind would blow me down. LOL
I can imagine that was a shock. I’m sorry you’re facing another wrinkle that makes life harder. I’m hypothyroid, so I can’t offer you any experience. I’m sure you’ll get some feedback from someone on TuD. I seem to remember a TuD member by the name of @Gerri that knew a fair amount about thyroid function. She hasn’t been very active lately but perhaps you can search some of her comments.
I’m just back from my quarterly endo appointment. I mentioned that I was concerned about my elevated pulse rate, often 90-110 beats per minute, and she prescribed a beta blocker for me to try. I’ll give it a try but I’m curious as to the root cause.
Good luck, Jen. As if you didn’t have enough on your plate!
Hi @Jackie11,
When I was first diagnosed with T1, I was also diagnosed with postpartum thyrioditis. My endo then diagnosed me as T1 with Hashimotos hypothyroidism. Although, I had just had my third child and instead of my thyroid slowing, it was overactive. I was in bad shape. Since I was breastfeeding, all this played havoc with my thyroid. In less than 2 months after I gave birth, I was already back down to my prepregnancy weight. I was a skinny, dizzy, tired mess with a newborn and another child to take care of. I was sleeping a lot and had no energy. Come to find out I was in early stages of DKA too. I felt like I was slowly dying.
For the most part, my thyroid is back into normal range but I have had bouts of hyperthyroidism. Since I was breastfeeding at the time, I chose not to take medication but my endo said it was an option. The hyper stretch calmed down on its own a couple months after I started insulin therapy and stopped all coffee. To this day, I cannot drink caffeinated coffee, I can only drink decaf. I am super sensitive to caffeine. I get severe tachycardia if I drink coffee and my blood pressure drops.
Busybee
Hi @Jen,
Fortunately or unfortunately, I did not go on meds for any of my hyperthyroid stints and I’ve had a couple. The first one I was breastfeeding so the meds would have passed onto my daughter. As bad as my symptoms were, all the ones you shared, I felt my daughter shouldn’t be affected by my health problems. I do remember having a very indept discussion with my endo about treatment options. I was adamantly against radtioactive therapy after doing a lot of research on the topic. Endo said that’s a last resort treatment option. There are other meds to treat hyperthyroidism before radioactive therapy. Please keep that in mind. From my reserach, I have discovered that antithyroid meds work more quickly than radioactive iodine therapy. What scared me is that the radioactive iodine therapy destroys parts, if not all of the thyroid gland depending on dosages. (Web MD) Thats to final for me. I like to keep my options open even if it means I may suffer for a short time.
When I had my hyper stints, without medication, they resolved in 2 months at the most. Sounds like you are taking a great route with meds. I know, believe me, I know how horrible you feel. It was just 3 years ago for me. I still remember it like it was yesterday. I felt like I was slowly dying. My heart wouldn’t stop racing, I was dizzy and tired all the time. I couldn’t think straight, my thoughts were all a jumbled mess. I looked like death standing up. All the color was drained from my face and to top it all off, my kids suffered because I really was quite vacant emotionally at that time. I did what I could to get through the day. Most of it was sleep. My newborn daughter at the time was a fussy, frustrating infant, no colic but just difficult. She is still like that even at 3 years old. She was so hard to manage during this time. My husband was so confused about what was wrong with me. I went from seriously, this healthy woman to a mess in a matter of months.
I remember sleeping 8 hours, waking up and still feeling horrible. Like I could go back to sleep and sleep another 8 hours. You are going to feel like that until your thyroid begins to get back into range. I will tell you what my endo told me, you need to try as much as you can to be patient with your body and with your feelings about all this. I know its hard, I’ve been there and you just want it to end.
Drink a lot of water, stay away from lots of caffine like coffee. Try to drink stronger teas if you can. I really got hooked on chai tea lattes and green tea. Try to stay away from junk food and/or sweets during this time while you recover. I love chocolate and not much has changed but I really focused hard on eating more veggies, fruits, and whole grains. Make sure you are taking vitamins. I take a multi vitamin, a B-complex, magnesium, vitamin C, omega 3 & 7 mix and vitamin D. For the Vitamin D I take 2,000 IU’s a day. Diabetics typically have low levels of vitamin D. Just makes good sense. I have read that you can’t really overdose on vitamin D but talk to your endo about it. My endo told me not to take iodine supplements as they can mess with the thyroid even more. I try to eat more naturally occuring iodine in food. I love sushi, the seaweed has a lot of iodoine in it. There are other food options but you will need to look into this yourself.
As for sleeping, sometimes I couldn’t go to sleep. My heart would race and I would lie awake at night. Keep all tv and/or electronics out of your bedroom. Make yourself tired before bed, like clean your house before bed so you go right to sleep. Showering before bed sometimes helps too. Stay on a good sleeping schedule. Do your best to go to bed around the same time every night and get up around the same time every day. I’ve read this is good for your body. It makes things predictable so that way your body isn’t trying to overcompensate for lack of sleep and so on.
If I think of anything else, i will respond back. These are the things I did to try to help my thyroid heal.
You are in my prayers. Try not to dispair, you can heal from this. You might have to take meds the rest of your life, but your symptoms will get better.
Let us know how you are doing in January. Small progress is good, celebrate the small milestones.
Busybee
Hi @Jen,
I totally forgot about the digestive issues. I had those too. The thing is I had IBS years before I was diagnosed with this. So when I experienced the digestive issues, I thought my IBS was back. It was just a symptom of the hyperthyroidism. Its insane how many issues come from this problem. I would encourage you to take a walk during the day. Minimal exercise can help. Walking might be best, maybe 30 mins or less. I remember that I did workout a little during my hyper events and while it was difficult, it did help later.
The other thing I would recommend for sleep and calming down at night is supplement called Theanine.
It can be taken to help calm your body down. I remember it began to help me during my hyper events. I would take it a couple hours before bedtime. Follow the instructions on the bottle. I think you can take 1-2 pills per day but don’t take more than that. Take a look at the link I provided if you take other meds and always ask your doctor/endo about it too. Remember I didn’t take antithyroid meds, so I’m not sure if it will interact negatively with those meds.
Busybee
Thanks, I’ll check that information out. It is amazing how many symptoms I was having—I could probably count ten of them—that were all due to my thyroid and I had no idea. I either brushed them all off or thought they were related to other things until they all piled up so that I knew something was seriously wrong.
After saying I didn’t have many problems sleeping with the beta blocker, I spent all of last night awake with palpitations, overheating, starving, and restless. I ended up taking a Benadryl and even then it took an hour and a half to make me drowsy enough to fall asleep for about two hours. Ugh.
I can’t imagine being on no medication. I think I’d still be hospitalized! As it is they offered to admit me for a day or two longer, but I chose to go home. But my heart rate and blood pressure were both dangerously out of whack. I need to get an echocardiogram to make sure there’s no heart damage. :\ (I’m sure it’s fine, but who wants to be told that…)
Oh @Jen I am so sorry to read of your rough night. Hang in there! You will make it through, the light at the end of the tunnel is coming. If I could offer some encouragement, the more positive outlook is that this is making you a better person, stronger character, etc, etc. Now when someone else on the forum here or in life that you encounter has this issue, you can help them through it. Most people don’t experience this much pain in their lifetime. I can honestly say that I am a better person now from having experienced this than not. I remember those too. To make you feel better, I don’t think my hyperthyroidism was as bad as yours is now. I’m was at the top threshold, so it was detectable. If yours is off the charts, thats pretty bad. I also think I caught mine relatively early before it was full blown. I think what pushed me to the hospital was the diabetic symptoms like the 500 BGs. Thats what scared me than all the other symptoms.
Hang in there, relief is coming. We have to be patient though.
Busybee
@busybee: Yikes, DKA on top of this would be truly nasty (and probably dangerous!). My T3 and T4 were detectable but were much higher than they should be. My TSH level was undetectable.
Today I’ve tried taking more of the beta blocker (they said I could take it as needed up to a certain amount, and I haven’t been taking the full dose), and that seems to be helping a bit. But I’m still feeling the same symptoms that I did before going to the hospital, so I’m wondering if I’ll need a higher dose of the thyroid medication.
You’re right, though. In the long run it will make me stronger. If there’s anything living with various conditions my whole life has taught me it’s that I’ll eventually feel better and make it through. :)
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