# New Graves Diagnosis, Two Questions to Ask...



## thumpandbabe (Mar 29, 2010)

I actually just posted a thread on the newbie board, but realized there is one for Graves and am posting here also.

So glad I found your website. I've actually been lurking around for a few weeks after my husband's visit to his endocrinologist. He was diagnosed with Graves Disease last week. I'll try to make this story as short as possible. After 6 months with horrible unbearable headaches everyday, he visited his general practitioner. He did blood tests and informed him his thyroid numbers were high. His sent him to an endo dr, who sent for the thyroid uptake (taken last week) and to a neurologist for the headaches. The neuro, in turn, sent him for an MRI bran scan (today - no results yet). After losing his job and having to start all over, very shortly thereafter the headaches began. Now, I've been researching for weeks that Graves can be caused by stress, but can headaches be caused by Graves? The neuro described them as cluster headaches or "suicide" headaches because they are so unbearable, that I guess is because some cannot go on in their lives with them. 
Uptake results:

no pyramidal lobe present
accumulation of radiopharmaceutical profusely and unilaterally in the thyroid
After 24 hours, his number was 53% (normal should be between 8 and 30%).
TSH Third Generation less than 0.01 (0.40-4.50).
T4 is 2.3 (0.8-1.8)
T3 is 37 (22-35)
T3 total 270 (76-181)

The endo now wants to give him a medication to turn off his thyroid. Aren't there any other options available like meds before they do this drastic measure?

And also, the headaches are so unbearable, again, can Graves cause headaches? He doesn't seem to have any eye involvement, except that the headaches always start behind the eye and now travel to behind the head and down the neck (always on the same side of the head).

Thank you for any input you may have!


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## Lovlkn (Dec 20, 2009)

> The endo now wants to give him a medication to turn off his thyroid.


thumpandbabe,

I think your endo might be referring to putting your husband onto anti thyroid medication such as Tapazole or PTU. Anti thyroid medication should be given to help reduce the thyroid hormone (excess) in his body.

If the doctor is talking about RAI or radioactive iodine you should first consider 12-18 months on anti thyroid medication to see if remission or low dose anti thyroid therapy can be attained.

Propranolol is probably another medication he will be prescribed as it will lower his T3 and help with any heart issues he may be having such as palpitations.


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## thumpandbabe (Mar 29, 2010)

Thank you for your reply. He is talking about the radiation treatment, one dose. Is is true that with the 12-18 month treatment with meds, he will need to be tested quite frequently to check his numbers?

Did or do you suffer from headaches with graves?

Again, thank you so much.


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## Lovlkn (Dec 20, 2009)

thumpandbabe said:


> Thank you for your reply. He is talking about the radiation treatment, one dose. Is is true that with the 12-18 month treatment with meds, he will need to be tested quite frequently to check his numbers?
> 
> Did or do you suffer from headaches with graves?
> 
> Again, thank you so much.


Some people have headaches - I was fortunate not to have them.

As far as the treatment options you need to do your research and make an informed decision. RAI can be a several treatment procedure depending on if the thyroid "uptakes" the radiation. It can also take years for the thryroid to die off with fluctuating thyroid hormone levels so in some cases things do not get better quickly and can drag on. The best advice I can give you and your husband is to ask to be put onto anti thyroid medication and take some time to explore the options which are anti thyroid med's, RAI or Surgical removal.

Frequent lab tests are necessary while on ATD's until things stabilize and can be as often as every 4 weeks. With RAI lab tests are still necessary and will depend on symptoms and can be just as frequent. With surgery lab tests are done at 6 weeks and whenever there are symptoms present and many people go as far as 6 mos to 1 year in between lab's.

It is far too early in your husbands case to be considering a permanent treatment and I urge you to take some time and consider going onto anti thyroid medication so you can research your options.


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## Andros (Aug 26, 2009)

thumpandbabe said:


> I actually just posted a thread on the newbie board, but realized there is one for Graves and am posting here also.
> 
> So glad I found your website. I've actually been lurking around for a few weeks after my husband's visit to his endocrinologist. He was diagnosed with Graves Disease last week. I'll try to make this story as short as possible. After 6 months with horrible unbearable headaches everyday, he visited his general practitioner. He did blood tests and informed him his thyroid numbers were high. His sent him to an endo dr, who sent for the thyroid uptake (taken last week) and to a neurologist for the headaches. The neuro, in turn, sent him for an MRI bran scan (today - no results yet). After losing his job and having to start all over, very shortly thereafter the headaches began. Now, I've been researching for weeks that Graves can be caused by stress, but can headaches be caused by Graves? The neuro described them as cluster headaches or "suicide" headaches because they are so unbearable, that I guess is because some cannot go on in their lives with them.
> Uptake results:
> ...


The eyes do not always protude. They will take the path of least resistance. Some folks have very small superior margines: frontal bones and therefore the globe cannot exit.

This in turn has a tendency to cause horrible pain/headaches so I sure do recommend an MRI of the orbits and definitely your hubby should be under the care of an ophthalmologist for there is much to be done to stave off this process. Treating the thyroid will not treat the eyes at this stage of the game.

Now...........................what med to turn off the thyroid are we talking about here? There are antithyroid medications. And of course there is radioactitive iodine which is not a med in the true sense of the word. RAI is permanent.

I am sorry this is happening and welcome to the Board.


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## thumpandbabe (Mar 29, 2010)

Thank you both for your responses. There are no physical signs with his eyes, just the excruciating headaches, but they did start behind the eye and pretty much start there every time, although it does travel through the head and down the neck (but on one side only). The headaches are what prompted him to visit his dr; having no idea he had a thyroid problem. The headaches are greatly interfering in his day to day routine to the point where it is hard for him to function some days. He did have a brain MRI yesterday, just waiting to hear (fingers crossed!). He was put on a week's worth of steroids to help with the headaches, but he is still getting them.

The dr. did not suggest a long term med treatment for his graves, just a one dose that would "turn off" his thyroid. I guess this is the iodine treatment? Maybe his numbers are so out of whack, and that's why the dr. would suggest doing this?

His blood pressure is fine and all his other blood work was within normal ranges, but he has lost more than 20 lbs. in the last few months.


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## Andros (Aug 26, 2009)

thumpandbabe said:


> Thank you both for your responses. There are no physical signs with his eyes, just the excruciating headaches, but they did start behind the eye and pretty much start there every time, although it does travel through the head and down the neck (but on one side only). The headaches are what prompted him to visit his dr; having no idea he had a thyroid problem. The headaches are greatly interfering in his day to day routine to the point where it is hard for him to function some days. He did have a brain MRI yesterday, just waiting to hear (fingers crossed!). He was put on a week's worth of steroids to help with the headaches, but he is still getting them.
> 
> The dr. did not suggest a long term med treatment for his graves, just a one dose that would "turn off" his thyroid. I guess this is the iodine treatment? Maybe his numbers are so out of whack, and that's why the dr. would suggest doing this?
> 
> His blood pressure is fine and all his other blood work was within normal ranges, but he has lost more than 20 lbs. in the last few months.


Well; I do hope that MRI of the brain included MRI of the orbits.

As our mod Lvlkn has explained, the better idea is to get hubby on antithyroid meds for the time being which would allow both of you to explore the other options that being RAI and/or Surgery.

We are here for you. Plenty of us have Graves' so you are talking to folks who have experienced it all one way or the other.


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## thumpandbabe (Mar 29, 2010)

Thanks again. Your input is so greatly greatly appreciated. I will ask about the MRI of the orbits. Thank you for being there for us.


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## Andros (Aug 26, 2009)

thumpandbabe said:


> Thanks again. Your input is so greatly greatly appreciated. I will ask about the MRI of the orbits. Thank you for being there for us.


And thank you for chosing this Board. Please do let us know about MRI of the orbits.


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## jackson2348 (Jan 30, 2010)

I know you will get lots of good information and advice here on the Graves, and treatment options to discuss with your doctor. I just wanted to touch on the headaches. My brother in law gets cluster headaches. I wanted to let you know that his doctor has given him an oxygen tank, and at the onset of a headache, he breathes pure oxygen for about 10-15 minutes. It lessens the severity significantly for him. Something you may want to ask about as a way to help him cope while you're sorting through all this. Best of luck to you both!


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## chopper (Mar 4, 2007)

Just to interject a moment here. Do not ever breathe pure oxygen without a prescription - you can die from getting too much oxygen. Air is only about 21% oxygen. If you get your hands on an oxygen tank do not use it unless it is prescribed by your doctor.


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## thumpandbabe (Mar 29, 2010)

I cannot tell you how happy we are to have found your site. Thanks again for all your responses. The neurologist called and said the MRI looked fine and ANDROS, I asked about the orbits (thank you so much) and the neuro said the orbits looked fine. He did say he saw indication that my husband was having migraines though. Don't know how this would show up? Maybe increased pressure or something? I will try to call him myself to see if he can explain to me in more detail, my husband was more worried he may have had a brain tumor or something and when he heard he didn't, he didn't ask many more questions. Anyway, the week steroid treatment is over and he told him to continue on the migration medication, but obviously, we want to get to the bottom of the headaches' underlying cause. I have read about the oxygen treatment and how it helps alot of cluster headache sufferers, but would only go through a doctor to request it for sure! I am really hoping that if the graves gets under control, the headaches would stop also. Again, these unbearable headaches were the reason for the first dr. visit. And even after the steroid treatment, they are still there. So, a visit to an opthamologist should be in order? Would they be able to see the relationship between graves and the headaches if the graves is the cause of them? I will take your advice and request that the endo start antithyroid meds instead of the RAI. Thanks again for EVERYTHING!


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## jackson2348 (Jan 30, 2010)

Thanks for clarifying Phil. I should have said "ask your doctor about" rather than just "ask about"!!!

I hope the headaches will resolve with the treatment for the Graves as well. I know they are debilitating. The optho should be able to tell if there is pressure behind the eyes, which could of course cause the headaches. I would make that appointment.

I have had severe headaches with my Graves, although they were not incapacitating as I know cluster headaches can be. They are getting better as we get my levels back into a normal range.


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## thumpandbabe (Mar 29, 2010)

Jackson,

Glad to hear your headaches are better. It is truly very frustrating. I will make that optho appt. He is hardly able to sleep and if he does fall asleep, BAM! they wake him right up from it. So terrible. Thanks again for your input.


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## Lovlkn (Dec 20, 2009)

thumpandbabe,

You need to ask your doctor for your husbands blood lab results and post them along with ranges. I'm very curious (and a lab junkie). Anti thyroid medication will give your husband relief from symptoms and give you tie to decide on which treatment option is best.

I'd also like to mention before your husband goes onto any anti thyroid medication he should have a liver function test run for baseline.

Lovlkn


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## thumpandbabe (Mar 29, 2010)

Lovlkn,
Thank you. I will post those tomorrow! Is a liver function test included in a regular blood workup?

Hoping the anti-thyroids will help ease the cluster headaches most of all.

Will check back in the morning.

Goodnight all!


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## Lovlkn (Dec 20, 2009)

thumpandbabe said:


> Lovlkn,
> Thank you. I will post those tomorrow! Is a liver function test included in a regular blood workup?
> 
> Hoping the anti-thyroids will help ease the cluster headaches most of all.
> ...


My doctor used to run a CBC and liver function test at the same time.

Has he started the anti thyroid meds yet?


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## thumpandbabe (Mar 29, 2010)

The neurologist started him on Verapamil. I looked it up and it seems to treatment high blood pressure, angina pain and just recently, cluster headaches.

I am going to find an opthamologist for him today.

Keeping him on pain medication is not solving the problem.


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## Andros (Aug 26, 2009)

nasdaqphil said:


> Just to interject a moment here. Do not ever breathe pure oxygen without a prescription - you can die from getting too much oxygen. Air is only about 21% oxygen. If you get your hands on an oxygen tank do not use it unless it is prescribed by your doctor.


Interesting and life-saving info. Wonder what they are doing about all those oxygen breathing cafe's throughout Europe? Think they had some in California also?

Eeeeeeeeeeeeeeeeeeks; that's a scary thought!


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