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Old 12-01-2004, 10:45 AM   #1
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Newly diagnosed, new to the board

I am a 47 year old female and have recently been diagnosed with Graves disease if that wasn't enough just over one month later my common-law partner has now been diagnosed has having underactive thyroid. He is also 47. I find it very strange that in a very short time of each other we are both diagnosed with a thyroid condition. Makes me wonder if it could be contributed at least in part to enviroment. It is very confusing, I was sent to an endro, but didn't get in for 5 months, in that time I went untreated and was having a difficult time. I am now on PTU. My partner was diagnosed and given meds by our GP within one week, now he will have to wait to take the meds because he is scheduled for a thyroid uptake test next week. It would seem that the hypo thyroid is a more serious condition.....my question is if that is the case why in the world would the Dr. be talking about RAI and my hyper thyroid going hypo....there is no need for me to be any sicker than I have been already. Is it common for spouses to each becom ill? Why such a quick reaction to the hypo thyroid, slow for hyper? I should say the endro was not too happy about how long it took and said my DR. should be taking it more serious as I have a pre-exsisting heart condition. Anyway, your thoughts, comments are appreciated.

 
Old 12-01-2004, 11:14 AM   #2
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Re: Newly diagnosed, new to the board

Hi and welcome to the board. It is so strange that there are so many people with thyroid problems. I have graves. One of my daughters has hypothyroidism.

I was on PTU for 2 years and then took the RAI. I don't think having the RAI is any better then just taking the PTU.

The RAI can make your eyes worse. If you are having any problems with your eyes, don't take the RAI, it will make your eyes worse. I have done a lot of searching on the internet and found this out.

I now have hypothyroidism from taking the RAI or the PTU. I don't know maybe from both.LOL
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Old 12-01-2004, 11:30 AM   #3
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Re: Newly diagnosed, new to the board

Hello and welcome. It is in fact common for spouses/partners to experience Thyroid problems together. Many of the problems associated with Thyroid are linked to stress and as such, couple tend to share the same stresses.....money, house, kids, etc....

Shortly after being diagnosed with Hashi's, my wife was diagnosed Hypo....we just happened to have our first child around the time things started going south....no sleep, money worries, crying baby, new parents....it takes its toll on your hormones for sure, particularly the lack of sleep when your body normally recovers from stressful situations. Without the proper sleep or the ability to catch up on some sleep with the new baby, we never had a chance to get healthy and recuperate and body parts just start crapping out at that point.

 
Old 12-01-2004, 11:34 AM   #4
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Re: Newly diagnosed, new to the board

Thankyou for your reply Lady50. It is strange indeed that there are so many out there that have thyroid problems. Interesting that you should bring up the issue of the Graves opthamology, at my most recent visit to the endro he said in passing that sometimes the Graves opthamology can worsen "for a while" after RAI. I have been having some trouble with my eyes, they are scratchy, watery and often tired. I recently went to my optometrist who said she did not see anything. I'm off the see the Dr. again in a couple of weeks, more questions, he will be sick of me for sure. lol

 
Old 12-01-2004, 11:40 AM   #5
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Re: Newly diagnosed, new to the board

Hello hypodude, thanks for the info, so in a way it is enviromental. Both living in the same stressful enviroment. Althou we really have not had tremendous amounts of stress, our children are grown (thank goodness) and doing well. We would have the normal stressors I would think. When diagnosed my partners first reaction was "is it the water or something?" His next comment was....." we are close but I didn't think this close"..lol He has been complaining that I stole his heat....I guess I did. lol

 
Old 12-01-2004, 11:44 AM   #6
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Re: Newly diagnosed, new to the board

and I live in an area where there at one time were 5 neighbours and two cats with thyroid problems. HMMMM

 
Old 12-01-2004, 11:46 AM   #7
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Re: Newly diagnosed, new to the board

It could be a million things. I often wonder that myself and the first thign to think of is diet, water or pollutants/chemicals or just plain coincidence.

Iodine found in salt is imperitive to thyroid function...so is selenium and tyrosine (protein found in meats and others..). Filtered water can knock out a lot of the needed nutrients.

I used to paint houses for a living as a kid and think sometimes the fumes all the time might have caused my problems....other times, I think back to a few chest x-rays I've had years ago...then smoking cigarettes for a few years, then working in a smoky bar for a little while in college....who the heck knows??? Too much to list to figure out what it could have been. My mom has Hashi's too so for me, its most likely hereditary...no idea.

 
Old 12-01-2004, 12:06 PM   #8
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Well, I know there is no proof at all, but I happen to live in a nuclear zone (within 2 miles) and have lived here since 1961 and the station 'went on line' in 1963. I know I know no proof but it seems strange.

 
Old 12-01-2004, 12:08 PM   #9
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Re: Newly diagnosed, new to the board

Quote:
Originally Posted by The2ofUs
It would seem that the hypo thyroid is a more serious condition.....my question is if that is the case why in the world would the Dr. be talking about RAI and my hyper thyroid going hypo....there is no need for me to be any sicker than I have been already.... Why such a quick reaction to the hypo thyroid, slow for hyper? I should say the endro was not too happy about how long it took and said my DR. should be taking it more serious as I have a pre-exsisting heart condition. Anyway, your thoughts, comments are appreciated.
I have to disagree that hypo is more "serious" than hyper. Hyper is, at least in the short term, much more serious, because it can trigger very serious heart arrhythmias... The reason your doctor is upset with the endo for not acting faster. The eye complications are more serious, too. It takes years, maybe decades, for hypo to become life-threatening; it can just make a person feel like death warmed over until that happens.

Please... before you even seriously consider taking RAI, use the search feature and look up the archived posts of K9Mom. (You could also try posting a separate question to her, using her name in the subject line to catch her attention. I haven't seen her here in some time, but you never know if she's lurking.) She's an avid proponent of treating with anti-thyroid drugs instead of RAI, because Graves' can go into remission if given a chance.

Last edited by midwest1; 12-01-2004 at 12:08 PM.

 
Old 12-01-2004, 12:32 PM   #10
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Re: Newly diagnosed, new to the board

Experiencing both, I also agree that Hyper is worse...Hypo you can sleep and be dizzy and it won't kill you and it is VERY uncomfortable but when you wake up to a heart rate of 158 beats per minute and hands shaking and blood pressure well into the stroke zone, well, that's just plain scary and could very well be life threatening. Perosnally, I'de take hypo over hyper any day. Both suck, but hyper can kill you quickly if not treated.

 
Old 12-01-2004, 02:37 PM   #11
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Re: Newly diagnosed, new to the board

Thankyou all for your responses. I will search the K9Mom threads for further information. While searching for information in the past few weeks, I have read very conflicting information on the RAI treatment. Some sites say it is the best option, others of course say not. I mentioned this to the endo at my last appt. he said the "reputable" sites would recommend RAI as the best option. I asked why not just stay on the PTU if it is working, his response to that is....PTU can cause a rapid drop in white blood cells, so it should be used to stabilize but not to be used indefinately. Of course my next question is....how will I know if that is happening? Well apparently I will just become ill with infection that I will not be able to fight off. That is NOT good. As I mentioned previously, I have a pre exsisting heart condition, infection is an enemy for sure, could cause problems with the heart valve that I have had replaced. It is worrisome. However, today on the PTU I feel much better than I did a couple of months ago. I will just continue to ask the questions and search for information and hopefully make an informed decision that my Dr. and I agree is good for me.

 
Old 12-01-2004, 02:49 PM   #12
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Re: Newly diagnosed, new to the board

I can understand your situation. In some people the white blood cells do drop.
I guess I was lucky and did not have that problem on PTU. The only problem I had is I went hypo on too much PTU. My doctor never told me that the dose would have to be reduced when thyroid levels become normal. I never thought about that either. What was I thinking? Bad communication with the doctor I guess.

There is another problem with RAI. You can develop thyroid storm. K9 mom can explain what happens there better than I can.

I did have the thyroid storm after RAI. It can be life threatening. The doctor did not tell me about that. While having the thyroid storm, I was on a beta blocker and PTU. I remember my heart flutters. That was so frightening. It lasted about a week.

After I had already went through the thyroid storm I found information about it. I don't think that would be at all good for your heart.
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Old 12-01-2004, 08:02 PM   #13
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Re: Newly diagnosed, new to the board

Thanks for the info Lady50, I'll be sure to discuss the possibility of thyroid storm if I have RAI with the Dr. I would think he would bring it up himself at the time, but from what you say your Dr. didn't. It sounds like I will be on PTU for a while unless I run into complications, at my last appointment the Dr. increased the amount of PTU because my antibodies were very high. Unfortunately, I do not know enough yet to make informed decisions, I have to trust that the Dr. is giving me the best medical advice. I find it somewhat frustrating, but I better get used to it, I'll be dealing with this for my lifetime in one form or another.

 
Old 12-02-2004, 06:34 AM   #14
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Re: Newly diagnosed, new to the board

Your welcome. I'll tell you what happened to me when I was diagnosed with graves. My doctor sent me right to the hospital to take RAI. That is when I didn't know anything about graves. This doctor I saw at the hospital was an oncology radiation man. The nurse asked me 100 questions about my symptoms. When I saw the radiation doctor, he told me that my eyes were in such bad shape that the RAI would make them worse. I did not believe him so I was really irritated. I was so upset that I even cried.

After that happened, I looked for information on the internet. That doctor was right. I would say that was really nice of him to let me know. My family doc didn't know much about graves I guess.

I finally got fixed up with an endo and she was really good. She acted like she really cared. Just couldn't afford her anymore. She put me on tapazole,which is another antithyroid drug. You don't have to take as much of it.

Then, I went to a hometown internal medicine doctor. He put me on PTU. Because it is not as strong as tapazole. He said even pregnant women can take that. I was not pregnant and never intend to be anymore. Shoot I am 51. Guess he had to make a good impression.

The best of luck to you and hope you get a good doc.
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Old 12-02-2004, 06:21 PM   #15
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Thanks again Lady50. I don't think I have much choice in the Dr. I get. Living in PEI Canada I was referred to this Dr. by my GP. I think he is it. Fortunately it is small here and so far I have heard good things about him.....I see that as a very positive sign...you know how it is...never a shortage of bad news. The other very positive side of all of this is the provincial medical coverage, so I do not have to pay to see him. I also am lucky enough to have a decent medical plan through my employment so medications are covered 80%. I am really trying to stay positive, I don't think further stress would be a benifit to myself or my partner. May I ask what your symptoms were concerning your eyes. I have been having scratchiness like allergies, and tired aching almost. I have always had some trouble with night vision and double vision which is some of the questions the Dr. asked me. Most sites discuss bulging of the eyes which I do not appear to have. Are there signs I should be looking for? Any and all information is appreciated.

Last edited by The2ofUs; 12-02-2004 at 06:22 PM.

 
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