[swhited]

#1060540

Hi,
I was recently diagnosed with Graves. I had thyroid storm numbers, but now am starting to feel maybe a little bit better. My TSH is still extremely low and T3 and T 4 have been cut in half but according to normal values need to be half of what they are now. I have only been using anti thyroid medication for about three weeks although so much medication, it’s a little hard to keep straight.

I’m wondering so many things. I asked my doctor a lot of questions and she was wonderfully patient, but I feel funny about taking too much time to ask more questions. Plus I’m not sure I even know what I should be asking.

How long before most of you felt well enough to do regular everyday non strenuous activities without causing high heart rate? Will I ever be allowed to have coffee again? How long have people had to stay on heart medication as well as thyroid medication? Is it true that I have probably had Graves for a long time, but the hyperthyroid symptoms only got to a bad point in the last few months?
What should I know that I likely don’t?

Thank you for any information you might be willing to share.

[Kimberly]

#1183201

Hello and welcome! Hopefully, others will chime in here as well, but keep in mind that Graves’ disease is very individual. We had a doctor at one of our conferences comment that he had never seen two cases that were exactly alike, even in identical twins! My Graves’ was caught in a routine physical before my symptoms got really bad, so your mileage may vary…

1. Heart rate wasn’t a super severe issue for me, but I remember being able to go back to my 3-mile walks at around the 8 week mark.

2. I gave up caffeine cold turkey when I was hyper. Seven years later, I mostly do half decaf. A regular cup of coffee will make me jittery, but I suspect that’s primarily because my system just isn’t used to it.

3. I did not have to take beta blockers, although many here do take these meds. I was on methimazole for 7 years. Have been off the meds for almost 3 months, due for labs this month to see if all is still OK.

4. It’s hard to go back and say exactly when your Graves’ started. I can point to symptoms that I had a few months before diagnosis, but mostly wrote them off to job stress.

5. That’s good that your doc is testing T3 and T4. Make sure that he/she doesn’t push you into making dosing decisions based on TSH, as that is *not* a reliable indicator early in the treatment process. If you are interested in more info, the “Treatment Options” thread in the announcements section of the forum has a couple of nice links, and the GDATF has a lot of educational videos on YouTube on screen name GravesAndThyroid.

Take care – and please keep us posted!

Edited 11/14 to fix rogue smiley in the middle of the post.

[flora]

#1183202

Hi there –
So glad you found this wonderful place to come to, too – you’ll find lots of information and great support from your new friends here (as you read our stories, you’ll see that we’re also known as “Graves Warriors”, “The Gravesters”, or “The Graves Gang” – count yourself in!). Like you, we are all at some stage of this “interesting” journey together. You ask how long we took to notice some improvement towards regaining some of our spunk and stamina, after first starting the AntiThyroid medication? Well, for me, it was about 10 weeks of waiting and waiting, and wondering and wondering if these tiny little pills were ever going to kick in. Then, one late Spring day, I began to feel the clouds lift just a little, and then a little more each week – a great feeling for sure – and the very worst was over. Since then, my doctor and I are still playing with my dose of Tapazole, to come to just my very dose – with little ups and downs along the way – but soooo much better than when I first showed up at his door in February 2013. Hope you’ll be feeling better really soon, too – (maybe lots sooner than I did!).
Keep us posted,
flora

[SueAndHerZoo]

#1183203

Hi, and welcome. In a nutshell, yes – you WILL start feeling like your old self again, and probably better! You WILL have a normal life, eating and drinking the things you like, and you will resume all activities and feel better doing them! Graves Disease does not have to be a life-altering diagnosis.

As was already said, each case is very unique and individual but they can all be gotten under control, either using medication, RAI, or thyroid surgery. Read as much as you can on this forum and you will see the various journeys and their timelines.

Being a Graves Warrior means you’ll probably spend some time on a roller-coaster…… the levels fluctuate and the symptoms fluctuate and patience is very important. It doesn’t happen as fast as we’d like, but it DOES happen, and you will probably start feeling better within weeks.

Don’t get discouraged – now that you’ve been diagnosed there’s a light at the end of the tunnel and you’ll get there. Just try to be patient with the ups and downs that occur along the way and keep reading others’ experiences here on the forum. There’s comfort in knowing that others do understand what you’re going through and have probably been there themselves.
Sue

[snelsen]

#1183204

Hi whited!
Welcome to having a wonderful group of new friends! (meaning US!) We get it, we understand and all of us have been through our own Graves’ hell. And that is what it is! The good thing is, that pretty soon, you can say “that is the way it WAS!!”

You will be better. Here is my experience, addressing your questions.
1. My heart rate was really fast, and as soon as I became less hyPERthyroid, it slowed down. So the heart med to slow my heart rate and blood pressure was discontinued when my BP and HR were down around 80, and 120-130/80 and below.
Of course, what I stated above was directly related to Graves’.
I am MUCH older than most on the forum, and now I am on a BP med for an entirely different reason, unrelated to Graves’

2. I drink coffee, no decaf. 2 cups in the morning. Rare cup in the afternoon, now and then. Is fine. You don’t have to give it up.

3. Before my diagnosis, I was a crazy, hyper person, who wanted to stay at work when my shift ended. I was in my early 20’s had a baby. It was not until I collapsed at work (in the hospital) that someone decided to actually LOOK at me, take vital signs, a history an do some labs. So I am sure I had Graves’ at least a year before my diagnosis.

4. Kimberly’s thoughts about T3 and T4 are very important. Treatment should be based on those labs, plus how you are doing clinically.

**If you are not doing it already, get copies of all your visits, and all your labs.
Shirley

[swhited]

#1183205

Thank you each.
I feel better just knowing I have people who I can ask questions of and who know I’m only slightly out of my mind;)
I’m living in a bit of a hole right now, which it sounds is pretty normal.
At least now I have faith that I can climb out with time and patience. Truly your support means the world to me.

When the Thyroid uptake scan was done , my uptake was 119% at 4 hours and 137% at 24 hours. (Range 7-25%, 10-35%). So I spent some time being treated for thyroid storm.
My TSH is .005 and hasn’t changed (which also sounds normal)
My T4 was 5.78(range .7 – 2.0)
T3 was 18.84(range 1.7 – 4.2)
TSI was 276 (range <140)
There were 2 other tests I didn’t understand:
Thyroid peroxide which was 16 (range <35) and
Thyroglobulin A which was 208 (range <115)

I’m taking methimazole 10mg 3x daily, Metoprolol ER Succinate 100mg and
SSKI 1 G solution in water 2x daily.
I feel like the semi hurtling at 80mph has crashed. LOL – better than racing through space at the speed of sound I’m told.

swhited from the Midwest
Again- many thanks

[Kimberly]

#1183206

swhited wrote:

There were 2 other tests I didn’t understand:
Thyroid peroxide which was 16 (range <35) and
Thyroglobulin A which was 208 (range <115)

Hello – TPO and TG antibodies are “markers” for autoimmune thyroid disease. They are very common in Hashimoto’s Thyroiditis, but a certain percentage of Graves’ patients (even those who do not have Hashi’s) test positive for them.

The TSI test measures stimulating antibodies in Graves’ disease, so that is the more important of the antibody tests that you listed. (There is also another Graves’ antibody test called TRAb that measures both stimulating and blocking antibodies).

Hope this helps!

[swhited]

#1183207

Hi all,

Another question – Some things I have read recently have me confused. Some say surgery is still a regular option for treatment. Some say surgery used to be very common, but is no longer. I’m fine going the anti thyroid med route for now. Just wondering depending on how things respond and being open to pursuing other options if or when needed. Hopefully not for a long whole.

The other thing I’m wondering about after reading treatment option articles on the forum. RAI and survey both result in eventual hypo state, which comes with its own mess of symptoms and not feeling well. I noticed some of you comment hypo was worse for you than hyper and some felt the other way. I know hyper has been quite awful and I’m sure hypo has it’s own hell. It also seems that we each must be our own advocate and speak up about treating how we feel and concentrating on symptoms and quality of life as opposed to primarily looking at labs, which some docs prefer I suppose because it’s more quantifiable. It’s been so long since I have felt well that I sure hope I recognize it when it happens. I will keep reading the experiences all of you have shared because I feel like that knowledge is powerful.

Have any of you experienced the wicked insomnia? How about terrifying nightmares? What has worked? My doc gave me a very low does of Ambien to help for awhile with the caveat that as my thyroid was more controlled the insomnia would resolve itself. It worked but that prescription ran out. The insomnia hasn’t resolved yet and I don’t want to ask for a renewal of that prescription because Ambien really renders you pretty out of it and that poses other issues that I find sort of scary. I would like to find another way to work through the insomnia that doesn’t leave you incapacitated. Any ideas shared would be appreciated.

Thank you

[Liz1967]

#1183208

I had no luck with methimazole and eventually got tired of feeling bad, but it is certainly worth trying. If it doesn’t work out, total thyroidectomy is routinely done and it is much easier to attain and maintain good thyroid levels on levothyroxine than on methimazole.

[snelsen]

#1183209

I had surgery. Cause it was the quickest. And it is. Major consideration is that you need a few weeks, usually 2, to recover, and that your surgeon “does” thyroidectomies, at least 50/year. Usually major medical centers or places i big cities. Others chose RAI.

Either way, it makes sense that there is a chance to “go hypo) but generally, people are started on a thyroid hormone (I take synthroid) quite soon, therefore eliminating the possibility of “going hypo.” The beginning mom. dose is sort of a kind of a guess. You go with how you feel (but you need to wait long enough to KNOW This) and your labs from then on. It is really not that bad.
For unrelated reasons, we tried to reduce my Synthroid a fair amount, and I DID get hypo. Felt like a slug who could not get out of bed. We gradually increased it again, but to a smaller dose. ****It takes AT LEAST 6 weeks, and more preferable to wait 2 months, before dose changes. Takes a while for everything to settle in, including you, so you actually DO know how you feel.

I felt like I NEVER slept while hyper. goes with being hyper. No nightmares .
Re Ambien, I know what all the studies and stuff say. Depends on how it affects YOU. I have it as an “insurance policy” and would not be without it. It helps me get to sleep if I can’t I feel fine the next morning, always have, no way can I tell that I have taken it. I would not feel a bit concerned to get the refill or ask for another RX. Unless you are rendered immobile the next day, and you are worried about it. From your post, maybe it does knock you on your butt the next day. Does it, or is it what you have read about it?? Poor sleep has plagued me for years. I do take gabapentin for sleep, (a seizure med, but also makes some people sleepy, which is a complaint of that med…) Another name is neurontin. It is very benign. Ask your doc about it if you want to stay away from Ambien, ask your doc about it, other name is Neurotin. I am not sure if it makes any difference. Trying to figure that out.

Sleep deprivation changes your, ours, mine, everyone’s whole world, that is for sure.

I do not have nightmares.

I am always pretty tired. Decided to stay up all the way until 9pm tonight..wish i were a night owl
Shirley

[Liz1967]

#1183210

Shirley is right. It is important to find a good surgeon who does a lot of thyroidectomies. Mine was great, had it done last December. Done on a Friday at noon, back home by four that afternoon. I was given something for nausea just prior so had no issues with post general anesthesia vomiting. No sore throat, no need to take supplemental vitamin D or calcium. Minor heartburn on Saturday, back to normal activity on Monday. Cannot even see scar. Best thing was that two week post surgery thyroid labs were normal! They start you on Synthroid right away and you are pretty much done except for some fine tuning.

[connypie]

#1183211

Hello swithed,ive had graves diagnosed for 20 years.had RAI 20 years ago.i well remember the insomnia.in the end i was lucky to get 3 hours of sleep at night.i was not functioning well at all.i thought i was going crazy.but once i had the RAI my levels started to go down and i was put on heart rate meds i slept much better.i still get the occasional insomnia,but it is related to anxiety i believe.so i take a happy pill and it calms my mind down so i can fall asleep.I also used to have very funky dreams that would follow me throughout the day.but since i had treatment and started taking levo,its like the lights go out in the evening and are turned back on in the morning when the alarm rings.i was on heart meds for about 4 years,wich is quite long.but i had a child on life support and that raised my stress level to no end,wich didnt help the graves at all.i also had a counselor refuse me meds and she said i had to go see the psychiatrist before she would give me anything.i was so mad,just started to dig myself out of the graves hole and she about labeled me mental.i went and saw the psych. and she laughed and said i was one of the most normal people she has seen.if you add severe graves and very high stress together its a bad combination.but that has left me with a bad taste in my mouth about mental health people.my graves will still act up if iam under a lot of stress,but i have learned to say “no”,wich helps alot.my first day of really feeling good,i rearranged my living room furniture and cleaned the whole house in one morning and then went to my dr appt.i swear it was like somebody had switched bodies with me overnite.lol you will feel better,its a frustrating disease,but it can be managed.

[Kimberly]

#1183212

Hello – Insomnia is definitely a symptom of hyperthyroidism, and I’ve also heard stories from others who had vivid nightmares while hyper.

You should see some relief as your levels stabilize, but in the meantime, you might google “sleep hygiene” and use those tips to set up a good nightly routine. Although it will take time and patience for your levels to move into the normal range, you might as well control all of the factors that you *can*!

[barbra]

#1183213

Hi swithed,

When I was first diagnosed with Graves I was put on Methimazole and Propranolol and started not only having nightmares or vivid dreams but every time I woke up in the middle of the night I had hallucinations. I knew that the stuff I was seeing was not real, which means I was not insane, but it was all very disturbing. When the doctor removed and replaced the Propranolol the nightmares and hallucinations stopped. It may have been the combination of the 2 meds or the Propranolol by itself, I don’t know.

Some time later I got a prescription for low dose Ambien for insomnia and I do take it once in a while, as needed.
My insurance company got all spastic over the Ambien and is only paying for 3 months out of the year. I guess it’s not important for Graves patients to get some sleep the rest of the time.

Hugs.
Barbra.

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