[rant]

#1059612

My partner was diagnosed with Graves earlier this month. He has it pretty severe; TSH undetectable and free T4 through the roof. Got diagnosed after 3 weeks of intense symptoms (sweating, nausea, headaches, tachycardia, high blood pressure, lack of appetite) that made it impossible for him to work.

He’s been on methimazole (10 mgs twice a day) and propranolol (20 mgs three times a day) for 4 weeks now. Blood pressure is under control, heart rate is good, but he’s still very symptomatic and is basically stuck at home.

If he goes outside for more than 10 minutes, he gets dizzy, sweaty, and nauseous. It’s better than it was (he used to get the symptoms upon standing alone), but he still can’t function.

His insomnia is terrible, and his fatigue is debilitating. He’s constantly falling asleep, but when he sleeps, he wakes easily.

His next appointment with his endo is in February.

I REALLY need to hear from other Graves’ sufferers. Is this normal? Is the debilitating fatigue often experienced? What about the other symptoms — how long did it take those of you with severe symptoms like these to start feeling better?

I’m concerned that the beta blocker is causing the insomnia/extreme fatigue. We tried cutting out one of the doses, but it doesn’t seem to have had an appreciable effect.

Should I be pushing for an earlier appointment with his endocrinologist? I’m deeply worried about him… nervous that he’s going to be feeling like crap forever. I know this is likely irrational, but I just need some comfort/perspective from other sufferers.

Thank you.

[Bobbi]

#1176163

Hi, rant, and welcome to the board.

Yes, we do get well again. That’s the first thing to keep in mind. Between the various treatment options (antithyroid meds or removal of the thyroid via surgery or RAI) we do regain our health.

Second, though, is that it takes time. It is very common to assume that because we’re taking a medication, that we should start feeling well pretty quickly. No. I find it useful to think in terms of hurricanes (something I’m all too familiar with). Hyperthyroidism is like a hurricane wind. Just because the wind goes away (with removal of the thyroid or medications) that does not mean that there isn’t significant damage left behind. It takes time for the body to rebuild, to undo the damage that being hyper caused. To “heal” in other words.

Third, the amount of medication that we take, has to be finely tuned. The first dose is part guess on the doctor’s part. This is inevitable. How each patient responds to the medication (whether it is antithyroid med or replacement hormone) is different, and it needs to be checked with blood tests after a reasonable waiting period, before changing it. The blood test results are more conclusive after a period of about six weeks or so, than they might be prior to that. So, we have to be “somewhat” patient. It is likely that the dose will be changed with the results of the next blood work. You can expect that. Once the dose of methimazole he’s on has been evaluated, the next dose (if there is a change) would be more finely tuned to his needs.

And, yes, the fatigue is truly debilitating. You might see if he is willing to try using ear plugs for sleep. I began using them when I was waking up every couple of hours when I had too much thyroid hormone. It blocks the slight noises that would wake me (snoring for example, or a siren going by, etc.) The beta blocker should help with the sleep issues a bit, as well.

As for pushing for a quicker appointment — as I said, it is helpful to wait until the blood test results stand a chance of showing the true effects of the dose he is taking. But after a couple of months, it is not necessarily unreasonable to ask the endo for an earlier blood test, should there still be very significant issues going on.

[Naisly]

#1176164

Hi there,

I would not wait till Feb. but I suggest get lab work done and see where his levels are. If you can get them on line, once you do, call the endo’s office and ask if your husband should raise/lower his dosage, this way he doesnt have to wait to see him.

He sounds a tad hypo to me. The average person responds within 3-4weeks to ATD’s, some 6 weeks. For me personally I responded within 2 weeks. So as you can see if differs from person to person. And yes, he wil feel lousy if he is hypo.

~Naisly

[snelsen]

#1176165

When the ADT’s and beta blockers are begun, both doses are pretty much a guess. Everyone reacts differently, and my general understanding is that, at this stage of the game, the endo should have told your husband to be in close communication with the doc about how he is feeling, realizing that it takes variable amounts of time for the meds to make a difference. And, that a set of thyroid labs, including liver function labs, should be done, to evaluate the labs with how he is feeling. That usually happens about 2,3 weeks after beginning the meds.
I find myself wondering if the way he is feeling NOW, is different than when he was diagnosed,a nd I think the endo would want to know this info. As Naisly said, he sounds hyPO, and hard to believe, but being hyPO is as bad as hyped, and in some ways, I found it worse. I could not function AT ALL.

I am guessing your husband has had the first appt with the endo, and that is it? But I suggest calling (I know it is another nightmare few days for medical care and office availability) and reporting how he feels, all of it, and asking
if you can have a lab requisition sent to an open lab (if this is available to you) or anyway, the endo should order labs, you and your husband should keep copies of all things, and the endo should know how terrible your husband is feeling.

It is true there are different periods of time for people to feel better, but it is very possible that one or both meds need to be changed, decreased, or whatever. This beginning dose is Not set in stone.
I am so sorry he feels so terrible. It is very demoralizing, discouraging and disheartening. As Bobbi said, we do get better. But it can be a rough ride while we are getting better. Far better to be diagnosed, though, beginning treatment.
Shirley

[Bobbi]

#1176166

I was thinking much the same thing as you, Naisly, until I reread the post. Sleeping in fits and starts is much more a sign of too much thyroid hormone than it is too little. Whenever I’ve been even slightly hypo, I can sleep like the dead. Just fyi……

[Naisly]

#1176167

You might be right Bobbi, and why I think it woud be imperative to have the levels checked sooner than later.

~Naisly

[snelsen]

#1176168

Yes. Get those labs! Hope you can make this happen. He does seem hypo.
Shirley

[Kimberly]

#1176169

Hello – The latest medical guidance recommends monitoring of anti-thyroid drugs every 4-8 weeks. However, some patients can respond *very* quickly to ATDs, and it’s important to get the dosage adjusted accordingly. Since your partner is having serious symptoms that are clearly affecting quality of life, I would definitely push for a quicker appointment. If your partner’s schedule is somewhat flexible, asking to be placed on the cancellation list can potentially help you get in more quickly. As an alternative, perhaps your partner’s general practitioner could assist with getting a set of labs ordered.

Also, at this point, keep in mind that any dosage adjustments should be based on Free T4 (some docs also test T3) and *not* TSH. TSH can remain suppressed for quite some time in Graves’ patients and is not a good benchmark for making dosing decisions early in the process.

If you are interested in learning more, you can check out the “Treatment Options” thread in the announcements section at the top of this forum.

Take care!

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