[marshlakemom]

#1019036

Hi All

I was diagnosed with Grave’s Disease just two weeks ago, and was given IRT (iodine radiation treatment)immediately. I was told they were trying to bring hyperthyroid to a hypo state, then possibly control the thyroid then with medication.

For years have been an extremely anxious gal, very easily agitated, extreme restlessness, can’t sit still, having memory problems, CHRONIC INSOMNIA to the point insanity, hot flashes (overheating spells) many many times/day, restless leg syndrome at night, vision problems, rages, depression, yaddy yaddy. All this was put down to childhood abuse, and I was diagnosed with depression and anxiety for 30 years, given every benzodiazapine and a/d known to mankind, and hit tolerance with them all 6 years ago, and it took me 2 1/2 years to get off them, the w/drawal was a nightmare. I’m not on any thing at this point and have been clear for almost 4 years …. I also have Celiac Disease so can’t consume gluten.

My long term doctor just retired, and the new doctor who replaced her gave me a complete going over, and came up with the fact that I have hyperthyroidism so sent me out to a specialist and I was tested again and treated for Grave’s.

It has only been two weeks, and I feel like I’m going manic here…..only side affect from the treatment was a day of nausea. The specialist told me to not expect much improvement in my symptoms for at least 3months, and that he wanted me back in mid-Nov for another blood test.

My biggest complaint is my sleep issue….I can’t sleep. I feel far too wound up, but am physically and emotionally exhausted……but why can I sleep.

Could some of you help me out here and explain some of your symptoms prior to diagnoses and treatment, and how long it took for you to to feel better.

I plan on leaving my hometown for 6 months this winter, leaving in October, and don’t know that it is a good idea to go and not have my thyroid in tact if you know what I mean. I would be going from Canada to the United States (snowbird), so I wouldn’t be able to get treated there.

If I’m not making myself clear here it is because I am so darn exhausted and tired to night, but also desperate to get some feedback .

Thanks so much,

Deb

[Ski]

#1068599

Except for the fact that you had options for your treatment that were obviously not communicated to you, it appears that you are being given good information, if not the support you need. So, we’re glad you found us here for that support!

It is pretty common for patients to be led to destruction of the thyroid upon diagnosis of Graves’ Disease, and that appears to be what’s happened with you. The excess thyroid hormone in your bloodstream can take up to six weeks to flush out after the treatment, so it is VERY common for patients to feel very little difference in their symptoms after just a couple of weeks. In addition to that, the thyroid cells that are being destroyed by the ongoing process of the radioiodine are ALSO dumping the thyroid hormone they’ve been storing into your bloodstream, as they die, and this can lead to a period of EXTRA hyper symptoms, right around the two-week mark (where you are). Typically that only lasts a few days, then begins to subside.

It’s very true that you may not feel remarkably different before the three-month mark. Dosing for destruction of the gland is part art, part science, and we also each react differently, so it’s literally impossible to know when you will drop into completely hypothyroid levels.

October is still a couple of months away, but I can understand your hesitation to be somewhere that provides you no health care at a time when you will likely need some type of monitoring. Is there any way you can have blood drawn at affiliated facilities in the U.S. and have it covered by your Canadian insurance? If you can get test results faxed to your health professionals and prescriptions phoned in to local U.S. pharmacies, you could likely keep your trip intact. Replacement thyroid hormone is VERY inexpensive, even without insurance, so at worst you could pay for that out of pocket, IF you drop into hypo ranges and require it before you get home. Doctors typically "start low and go slow," so if you find yourself hypo, you could buy a 100-day supply to best cover you ~ pill splitting could be a help (the doctor could prescribe double the dose you need, then you could take half a pill each day, reducing the cost to you, and extending the life of your one prescription). Six months is a long time, and you will DEFINITELY need some level of monitoring at least, so I would suggest figuring out how to make that happen before making the decision whether or not to go on the trip. If you go hypo and wait to begin thyroid hormone replacement, it’ll just take longer before you feel well, and the time in between will be a real slog.

Now, your sleep issues ~ VERY common while we are hyperthyroid, by the way. It’s tough to manage, I remember, and we need to know that it’s CHEMICAL. It’s not that we just "can’t relax," it’s that our body is revving and we can’t just "think it away." Since you’ve been treated, things should begin to settle eventually, but not necessarily right away. Try the basics ~ a bedtime routine that includes something like a long hot bath or shower, some type of relaxing activity (reading, NOT TV), perhaps a sleep aid (but of course, be careful with that) and maybe a lowered expectation of how many hours you will sleep. It’s been studied and they have found that lying in bed, being completely still, can provide almost as much benefit to the body as full sleep, so try not to be anxiety-ridden over the sleep you are NOT getting, if you catch my meaning. Do all you can to rest, and if that’s unsuccessful and you find yourself getting anxious, get up and do something calming for a little while, then try again. Try short daytime naps, if you can do that. Just kind of fit in your sleep when you are able, and try not to stress about it TOO much. Once it becomes "chronic," we can have an emotional component that is much more difficult to break through, so do your best to just take it easy and do what you can, knowing all the while that your normal sleep patterns will return after your thyroid hormone levels return to normal and stabilize.

I hope that helps! Let us know how things are going for you!

[runlacie]

#1068600

Wow, Deb!

Sounds like you have been through the wringer these past years! Lots of those symptoms you’ve had ongoing sounds like hyper Graves’ and it will be interesting to see how many disappear now that you’ve been treated. Super that you got treated immediately- I waited several weeks here in the US. Many people here are under the impression that the Canadian medical system is very slow, but I do not believe that at all.

I had rai one month ago, and have felt kind of bad (more hyper) a couple of times since then. Overall, I think it is working, though. You have a little time to see how you feel before you make a final decision on your winter. Maybe you will be "lucky" and go hypo rather quickly and get things squared away first? Ski’s suggestions were great about getting the prescription filled before you leave. Really, that’s all you’ll need is replacement hormone, you just don’t know the dose yet. And you can be in contact over the phone with your doctor to adjust dosages. If you can’t get your labs paid for while you’re here, that could be a problem. I used to live in Florida and it seems like with so many elderly Canadian snowbirds that there must be an answer out there or how would they be able to stay so long? I hope you get it figured out and that you feel better soon!

[Andros]

#1068601

I think Ski has covered all the bases. I just wanted to comment on the emotional component of not sleeping. I believe in my own case that I eventually could not sleep by rote. In other words, it became part of my life-style of jumping up and down from the bed all night long.

It took some time and the proper level of thyroxine replacement but I eventually calmed down and slept. And……….much to my surprise, I reached the REM stage and finally started have dreams again!! They were missing in action all those years during untreated hyperthyroid/Graves’!

How about you? Do you still have dreams or no?

Lu Anne

[marshlakemom]

#1068602

Thank you Ski for your thorough response to my desperate plea last night for some insight into this mess I’m in. I’m truly going through a rough patch this past two days, feeling very off the charts emotionally, very fatigued, and my shortness of breath has been particularly bad this past couple of days. I thought I was going to have to have hubby take me into the medical clinic today just to satisfy my fear that I was not going into a massive heart attack or something. Stupid I know !! I’m breathing like a person who is 200 lb. overweight, and I’m only 160 lb. (Should be 130, but we won’t go there)

I have suffered with this for the better part of my life and the sleep issue is the one that gets me down the most. If I could get some sleep, I probably wouldn’t be as manic during the day. It makes sense Ski what you said …."it’s chemical"……. I have been out to sleep disorder clinics only to be diagnosed with sleep state misperception……..I say what !!

Once again thanks guys for your responses, if it wasn’t for forum’s like this one, so many people wouldn’t have the support they truly need. Doctor’s can tell us one thing, but to experience it is another.

Let’s hope tonight is a better one, and tomorrow brings me some energy and focus.

Deb

[marshlakemom]

#1068603

p.s.

I would be interested in hearing about other people’s experience with the "shortness of breath" issue.

Deb

[joseph15355]

#1068604

Hang in there. Ive recently(this week)been diagnosed too-with all the same symptoms as u (plus a Heartrate thats dangerous)i wish u much luck and much sleep.

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