[Mish5572]

#1018437

Good evening everyone. I know that I am going to sound like I am whining…never mind I am whining. I have had a rather tiring week, not that I have done anything to cause me to be tired. Lately it seems as though just walking up on flight of stairs slowly will leave out of breath. This afternoon I took my teenage daughter to the mall to by a bikini. We walked slowly and only went into a few stores, but at the moment I feel as though I ran a marathon. I am exhausted. Does that get better? How long does it take?

Oh, I do have a legitimate question though. Last night my left shin started itching, and I didn’t think much of it, I just scratched…many times and went on my way. Today both shins are itching andI am developing a rash. Any idea what that could be? Should I call my Endo?

Thanks,
Michelle

[snelsen]

#1064820

Yes, you should. Although it is not a weekend thing, not emergent. It is a side effect of one of the antil thyroid driugs. AReyou taking any? It is late, I am tired, and too tired to say much tonight. The facilitators will weigh in tomorrow,, but believe me, you are not alone in this world of thyroid issues. I do recall it as a specific side effect, so the next step is th hear which drugs you are taking. Call on Monday, leave a message, emphasize it is a new symptom, and you re mighty concerned, ask for a call back the same day. The best to you for the rest of the weekend. Hydrocortisone ointment and/or benedryl ointment may help with the itching. Try the latter first.
Shirley, not a professional, just from experience.

[Ski]

#1064821

It is possible that you’re beginning to show symptoms of pretibial myxedema, which is a kind of "orange rind" rash we can get on our shins (and/or upper part of the feet, I think), and it represents the third known condition in what some doctors are now suggesting may be the "syndrome" of Graves’ (the other two being the thyroid condition and TED). It itches like the dickens, and can be treated with steroid creams. A dermatologist can do a biopsy to find out for certain. Symptoms can come and go randomly.

[Kimberly]

#1064822

Michelle – On the fatigue issue, I recall from a previous post that you were recently diagnosed and started on Anti-Thyroid Drugs. Everyone’s experience is a little different, but I personally struggled with fatigue during my first 8-10 weeks on the meds, while my levels were falling into the "normal" range. One doc said that my body had gotten used to running at full speed, and it took a period of time for it to adapt to running on normal levels of thyroid hormone again.

With Anti-Thyroid Drugs, it is common to re-test your thyroid levels after a month or so…and then decrease the dose if your levels are falling nicely. The goal is to get your thyroid levels into the "normal" range *without* sending you hypO.

As you progress on this journey, keep an eye out for hypO symptoms, which can include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. Some patients respond FAST to the meds, so if you start to experience these symptoms, it’s worth a call to your doctor’s office to get your levels tested.

Best of luck!

[genuinruby]

#1064823

Mish5572 wrote:not that I have done anything to cause me to be tired. Lately it seems as though just walking up on flight of stairs slowly will leave out of breath. This afternoon I took my teenage daughter to the mall to by a bikini. We walked slowly and only went into a few stores, but at the moment I feel as though I ran a marathon. I am exhausted. Does that get better? How long does it take?

Michelle, for me, I don’t have every sympton, everytime my levels start dropping back into the hyper-zone. Getting winded just walking a short distance is one of those signs for me. It always goes away as soon as my levels go back to normal range. Of course, the first time it happened to me I thought it was due the the huge amount of weight I have gained. I tried to start exercising…lol..what a mistake that was.

[Mish5572]

#1064824

Thanks to everyone for their input. I don’t know what I would do without this BB. Anyway, I thought I would post an update. As I stated in my original post I started coming down with this rash a week ago Friday, and I thought I would lose my mind from the itching. Well, by Sunday it was on my shins and on my fore arms and my whole body itched. Sunday night I was at church and after service we were just hanging out and all of a sudden I fainted. One minute I’m talking to a friend and the next I’m on the ground looking up at all of these people staring at me…(ever feel like a gold fish?). Monday I call the Endo and he lowers my dosage of Tapazole from 30mg to 20mg daily, and lowers my Propranalol from 120mg to 40mg daily.

I went back to the Endo yesterday and the rash is gone, but the itch stayed behind to keep me company. The Endo said I would just have to live with it because he doesn’t want to take me off of the Tapazole since my levels are so high. Benadryl and I have become very close friends…the upside to this is that I have discovered that Benadryl makes me sleepy so for the moment I am not suffering from insomnia. See…there always is a silver lining

Anyway, since he lowered my Propranalol the tremors and chest pains are back and my heat intolerance is much, much worse but I haven’t fainted again. The Endo said that he had hoped to get my levels down to normal or close to it before doing RAI, but he may not be able to since I am not responding the way that he hoped. He said that it would make it much harder post-RAI when my levels go up. I go back to see him in September unless something weird happens between now and then and will take another look at my labs at that time.

Meanwhile, I have been doing some research on RAI online and most of what I have found consists of generalities instead of specifics about pre and post RAI and the procedure itself. I want to know the do’s and don’ts and what I can expect to experience. Will I have to limit my exposure to my family? Will I be able to work? I think that GD has turned me into an information junkie! Does anyone have any suggestions for informative websites, would anyone want to share personal experiences?

Thanks so much,
Michelle

[njnichols]

#1064825

Hi I’m new to the site but not to graves. I was diagnosed in sept 07 and had RAI in Nov. I was able to go back to work that day. Slept by myself and no close contact to anyone for a few days. It was about a week before I could hug my nieces and nephews. I also had to sign a paper saying that I wouldn’t have children for a year. I started going Hypo in January and the Endo has been modifying my Synthroid ever since. It wasn’t that bad for me. I hope that gives you a little info. If I remember correctly when I went to the hospital to talk about the tests and such they said I could have a thyroid storm after it started dieing off. I was fortunate and didn’t have one. Hope this helps. Good luck.

[snelsen]

#1064826

Hi Mish, several of the facilitators, plus folks who have had RAI, are better equipped to answer your questions about pre/post RAI. (I chose surgery.)
I suggest you put RAI in SEarch, there have been some good discussions, and I think that will capture them.
I think, when you hear from the other folks, that you will find that they were NOT told to refrain from pregnancy for a year. From my experience with friends who have had it, they stayed away from others for close contact for three or four days. You will get better info from the others.

Re itching and benedryl! go girl! It is used as an off label sleep aid, so if it is helping you, that is great!
Do you plan to call your doc to tell him @ chest palpitations/pain and tremors? Also your pulse rate, what is it? He really reduced your propanolol a lot, and perhaps he needs to know your symptoms, so there is a dose in between 120mg and 40 mgm a day. It is also important to not have your body racing like a steam engine.
Just curious, did he mention switching to PTU? For some reason (just my own experience) my levels did not bidge with meth, but began to go down nicely with PTU.
Sure wish you well, this site is a lifesaver, that is for sure. Look forward to hearing how you are doing.
Shlrley

[Bobbi]

#1064827

Regarding the itching. You might have developed dry skin as a result of the hyper condition. Try using a really good moisturizer on your wet legs. I use two, at the same time, one that is not terribly thick, covered by one that closely resembles petroleum jelly. It is important to apply them to damp skin. And, at night, when this first started, I would wrap them in plastic wrap for the night. Oh, I was such a vision of beauty! But it did cause the moisturizer to penetrate the skin better, and it helped eliminate the itch.

As for RAI. You must go off the meds about a week before RAI, in order to enhance the thyroid cell’s "thirst" for iodine. Doctors vary on how long they want their patient’s off the ATDs. But we do go hyper prior to taking the pill. The procedure itself is simple: you swallow a pill (or sometimes a flavorless liquid). It can be a bit nerve wracking because the tech or doctor will bring the medication in to you in a heavy lead-lined container. This is to protect the staff from unnecessary exposure to radiation. Radiation exposure is cumulative over a lifetime. The sun we get today, is added to the sunburn from twenty years ago, which is added to the chest xrays, etc. etc. So people who work around radioactive sources take precautions, even if the radiation coming off is minor. (Think of the dental technician who leaves the room before turning on the xray.)

After you swallow the pill, you are sent home. RAI (I131) is very soluble in water. You will probably be told to make sure you are drinking liquids, because this will help to eliminate any RAI that does not get captured by a thyroid cell. The excess RAI comes out within a couple of days in our urine (we’re told to double flush the toilet for a few days), our saliva (don’t share eating utensils or toothbrushes or such), and our sweat (wash sheets and towels and clothing well). RAI has a very short life-span (measured in half-life terms). After 8.1 days, half of the RAI that got taken into your thyroid is gone. After 16.2 days, only a quarter of it is left; after 24.3 days, only one-eighth; and so on. Scientists have settled on five half-life periods as the "life span" of a radioactive substance. So, in 40.5 days, the RAI is essentially gone from our bodies.

We are told to take special precautions with small children and small pets. This precaution is to avoid giving them an unnecessary exposure to radiation. And with small children and pets, the tendency is to hold them up, next to our necks. Not advisable for the first week. But older children and adults do not require the same vigilance. As long as we can leave some space we do not need to isolate ourselves. (This may not be true for someone who has an immense dose of RAI — like thyroid cancer patients. I am speaking for the Graves’ treatment here.)

Many people throughout the years have mentioned that they took their RAI on a Friday, and then went back to work on Monday. It depends upon the work, and how sick you are to begin with.

Side effects? A sore throat is typical. here is inflammation from thyhroid cells being damaged. How sore varies. I didn’t even take tylenol for mine, but other people have reported significant soreness. And, about one week after RAI people experience really significant hyperness. We call this "dumping" here on this board, because what is happening is that the dying thyroid cells are releasing their stored supply of hormone into the body, all at once. This is not the same thing as thyroid storm, because in storm the cells are making new hormone to dump. After RAI they’re damaged and cannot function to make new hormone, but the do release any they’ve previously made. This is one reason why your doctor wants you to have as low an amount of thyroid hormone as possible. Our endos often give instructions for increasing the beta blocker during this period of time to make us a little more comfortable.

I hope this helps.

[cynthia]

#1064828

need info from you all have been on meds for about 7 weeks recentily taken off meth. and put on PTU related to muscle cramps and leg weakness as well as extreme fatique muscle cramps better but fatique stayed stay in bed 22 hours a day too weak to walk or stand for a few minuites….. is this a normal fatique I realize that I have been hyper for years but this is really killing me am active and hate the bed still not sleeping more than a 4 to 6 hour restless sleep ….by the way on zertyk ( spelling???) for the itch forom the PTU it is better with this med so staying on it…. please tell me wheater this is a normal fatique or should I be concerned?????? thanks really need input by the way on propanaol but not need much anymore pulse and chest good….thanks cb

[Bobbi]

#1064829

Do not stay in bed all day. Drag yourself up and move about. I know you are tired, but staying in bed will make your muscle weakness much much worse. Do you have a tape player or dvd? Rent comedies and watch them. From a chair or sofa. Do you have a rocking chair? Rock in it — it is a gentle form of exercise for the muscles. It’s summer time: if it isn’t too hot outside, move out and get some sun for a few minutes. Plan to make yourself move just a bit all day long. Seriously, Cynthia, I know you feel rotten right now, but I watched my mom get weaker and weaker when she wouldn’t get out of bed after she bruised her knee one time. We humans are designed for movement, and the muscles atrophy when we don’t use them.

[Harpy]

#1064830

As above
Muscle movement is very important, not strenuous, just movement. In addition to the comedies/laughing and rocking, regular walking on level ground, even just around the house from room to room.
The contraction of muscles helps push blood and lymph fluid back up to the heart and reduce the amount of work that the heart has to do, just no strain and not enough to push the heart rate and breathing too hard.
All over stretching as well, think slow gentle movement, but there needs to be movement to help the muscles to heal.
As a side point I just read that sometimes the throat muscles may also get fatigued by graves causing the sore throat and hoarseness, Think it’s also been mentioned elswhere.

[cynthia]

#1064831

thanks all for input very important to all of us!!!! I try and move about but am sooo fatiqued actually have my grand kids this week and am takinging them to a few activities but get so tired just sitting they say when I tell them that I have to go home very tired " but mo mo all you have done is sit ???" they have actually been great with me take out the trash ect very helpful my house is nasty ugh and it is driving me nuts just washing my clothes kills me I just need to know if this is normal also my abdomen is distented recentily sure am gaining weight but it is hard this is recent from start of PTU should I be concerned ????? the problem with graves is that the symptoms mimic other things ????? thaks cb

[snelsen]

#1064832

Maybe a good idea to have a thorough physical. I don’t know about the distended abdomen and extreme fatigue. I know it is yet another appointment, but probably the right thing to do?

[Kimberly]

#1064833

Hi Cynthia – Yes, a physical would be a good idea just to rule out any other issues. I know that I experienced the distended abdomen early on in this journey, but it seemed to subside as my hypER levels came back down to normal. I’ve talked to other patients who have been through this as well.

You might also try playing around with your diet to see if you can pinpoint certain foods that make the issue better or worse. Personally, I find that my stomach is happier if I limit my dairy and gluten intake. As for weight gain, yes, that can be an issue for those of us who have been through treatment. If you do a search on this site for "weight", you can see that many others have struggled with this issue as well. *However*, your #1 priority right now is to get your thryoid levels normalized. I know that you aren’t feeling well now. ” title=”Sad” /> Getting your thyroid levels stabilized is the first step on the path to re-claiming your life and your good health!

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