[Kimberly]

#1063821

Hi Sarah – I would definitely call someone at your doctor’s office to follow up. I’m sure that every one is a little different, but I was given a prescription for Anti-Thyroid Drugs (methimazole/tapazole) the same day that my endo told me about my Graves’ diagnosis.

The Atenolol is called a “beta blocker” and will help mask the symptoms of your hypERthyroidism, such as a racing heartbeat. However, if you have Graves’, you need to select a treatment option that will work *directly* on your hypERthyroidism. Otherwise, this can cause long-term damage such as heart issues, bone loss, muscle wasting, and a potentially very serious condition called thyroid storm.

I would also mention the itching to your doc’s office. This can be a side effect of Anti-Thyroid Drugs, but it sounds like you aren’t taking ATDs at this time. I have also heard of some patients complaining of itching associated with hypERthyroidism…or sometimes with changes in hormone levels (i.e. major swings up or down).

When it comes to our health, it definitely pays to be the “squeaky wheel” and make sure that our doctors’ offices are on top of things. Unfortunately, sometimes we need to fight for ouselves to get appropriate treatment.

[shale72701]

#1018298

In August 27th I went to the dr.s with increased anxiety and mood swings. I have had always had these to sx and for the last three months I stopped taking my antidepressants so I thought it was due to that. The dr had tested my throid which came back abnormal. Hyperthyroidism. They had me test again which resulted the same. I did do further testing such as the RAI test which showed that I had the Grave’s disease. The dr. wanted another blood tes,t this test was accidentaly lost so I tested again. It has been over a month and I am on antenolol for the sx and hydrochlorothiazide for the water retention. How long does it take to get on a tx. Also is itching a normal sign of GD?

Thank you,
Sarah

[genuinruby]

#1063822

Hi Sarah,
Welcome, I hope you find relief soon. I am not sure what the abbreviations ‘sx’ and ‘tx’ stand for in your post, but I can tell you I had to deal with insane itching. Which I found was especially troublesome after eating seafood. I had this itching long before I got a diagnosis of graves.
Ruby

[snelsen]

#1063823

sx=symptoms
tx=treatment
Hope this helps, it is medical jargon stuff.
Shirley

[shale72701]

#1063824

Thank you for your responses. I feel better that I know that others are having the same issues. I found out part of my problem was using the atenolol. I ended up going to the er with a heart rate of 40bpm. Thankfully, I went because I would have continued using it and today after not taking the atenolol I haven’t been itching as bad. So I hope I have resolved that problem. I am on bed rest for four days until the medicine is out of my system which is really hard with two children.

Sarah

[snelsen]

#1063825

Sarah, as Kimberly said, I do think you should call your doctor tomorrow for a couple reasons. She discussed atenolol, why we take it, and I would like to add a little conversation so you can understand a bit more about what is going on.

First, it helps to know that atenolol relaxes the blood vessels, thus slowing the heart rate, which is why it is prescribed. It is specifically prescribed to slow a very fast heart rate, which, if it is present, is serious. It is bad for the body to be so revved up that the heart rate is very fast, 120-200 is FAST! However, when you begin to take it, it is very possible that the dose and/or frequency might need to be adjusted up or down. Sounds like you initial dose slowed your heart rate TOO MUCH. If you heart rate is that slow, then you might feel dizzy, generally not ok. There is another variable that can help you if you ever have that slow a heart rate again. IF you have not been drinking fluids, or enough water, your blood volume is depleted, so drink a couple glasses of water.
I would like to think that this was all explained to you by the doctor who prescribed atenolol, or the pharmacist when you picked up the drug, since it was a new drug. Now I am concerned that you are not taking the drug at all, and you need to be aware of your heart rate, for it may go right up to racing again. I am also concerned that you are supposed to be on bedrest for four days. Is that what the ER docs said to do? Or your doctor? ARe you feeling pretty good now? I suggest that you call whomever told you to be on bedrest, and ask for clarification on that. Of course it is difficult with small children.

Finally, it is always a good idea to understand the thinking behind why you are prescribed a drug you have never had before.
You did mention water retention. That is not a typical symptom associated with Graves’, but as you have already learned from this site, we are not medical professionals. This is a good time to follow Kimberly’s advice regarding your health.

"When it comes to our health, it definitely pays to be the “squeaky wheel” and make sure that our doctors’ offices are on top of things. Unfortunately, sometimes we need to fight for ouselves to get appropriate treatment."

So this is the beginning of you taking an active part in your heath care. With that in mind, I strongly encourage you to go to an endocrinologist who treats Graves’ patients. NOt sure where you live, but hope this is possible. This is a long road, and at this time you really probably do need to be seen by an endocrinologist.
Kimberly mentioned another point, and that is if you have Graves’, almost without exception, an antithyroid drug is prescribed, and this has not been prescribed for you.

I know that this is a tough time for you right now, sitting in bed, wondering what is going on, and all of us are here to help with our experiences. Keep writing, keep track of how you are feeling, definitely take your pulse now and then, take your blood pressure if you have a cuff at home. Do you think your doc will refer you to an endo? It is fine to make an appointment on your own, but frequently they need a referral. This a perfect time for you to begin to keep track of ALL medical records. You will need to sign a form from wherever they are. Get a copy of your labs, then call the endo.
There are two websites for you to explore, to find a qualified one for Graves’ in your area.
I will count on one of the faciltators to send them along, for I can never remember then when I am trying to give them to someone.
Best, Shirley

With this in mind, look at the home page of this site, read some of the information that is posted there about Graves’.

[Ewenme]

#1063826

Re: water retention. You stated, Shirley, that this is not typically a symptom associated with Graves Disease. However; that is exactlly the symptom that caused me to see my doctor. My ankles had suddenly become quite swollen. That was the only symptom that presented itself in my case. My heart rate was too high, which caused my circulation to be less efficient, causing swelling of the ankles, somewhat like what occurs in congestive heart failure. After a couple weeks on atenolol and getting the heart rate back to the normal range, my ankle swelling went away. So water retention, though not a primary symptom, can be caused by a heart rate that is too high, which IS a common symptom. I was fortunate my doctor didn’t just put me on diuretics and send me home, or assume I had a heart issue. He immediately ordered the appropriate tests, and came up with an accurate diagnosis.
Joy

[snelsen]

#1063827

Hi Joy, that is good. It’s just a matter of having more information, thank you so much for the clarification. Sounds like you are on top of everything!
Shirley

[shale72701]

#1063828

Swelling of my legs and ankles is what brought me to the urgent care before I found I had GD. I noticed my itching came back…even after I stopped taking the atenlol. I called the dr. to make a follow up after my er visit but was referred to the consulting nurse to make that appt. I did call a couple of dr.s to see if they were taking new patients, but it was 3-4 weeks before I could be seen.

[snelsen]

#1063829

Hi Sarah, did you take the appt for three weeks? Your really need to be seen for regular care, as you know. I suggest, also that you give them your name for any cancellations that come up. The reason that you have to wait for an appt that long, is not only that they are busy, but much more time is scheduled for new patient appointments with an endocrinologist. Is this with an endo? What is your heart rate now? Were you able to get your labs so you have them? How are you feeling? Has anyone asked you to return for lab after you have been on the diuretic?
I am hoping that you can get established with an endo as soon as possible. If your heart is really racing, as I described in my previous post, that is a worrisome thing.
Write with more info about how you are feeling…
Shirley

[Kimberly]

#1063830

Hi Sarah – You’ve received some great feedback. Here are the web sites for referrals that Shirley mentioned: http://www.aace.com/ and http://www.thyroid.org/. If you use the AACE site, be sure and select the specialty “thyroid dysfunction” — otherwise you could wind up with a doctor who primarily treats diabetes.

The suggestion to get on the waiting list for a cancellation is a good one. Also, another doctor might be able to help you cut through the red tape and get an appointment sooner. Perhaps your General Practitioner’s office can help…it’s at least worth a phone call!

Please keep us posted on how you are doing…you definitely need to get in to a doctor who can help you sort through your treatment options and get you back on the path to good health.

[shale72701]

#1063831

Thank you for your ideas. My heartrate is about 48 bpm which I guess is fine due to that I have a 1st degree heart block. I haven’t returned back to the dr.s nor have I made an appt anywhere. I basically got very disgusted with the office when I tried to make a fu appt and then gave up all together. I know it isn’t the right choice and I am only hurting myself and my family. I am very impatient and angry and hate having to disclose my personal issues to the drs. over and over again. I just hope that I will feel good again, logically though I know I need to go in and see the dr. not taking any medicine is only going to make things worst. I try to say to myself it isn’t a big issue to be hyper, and I don’t need to go in. I am confused, I guess I am looking for someone to come with me and to guide me through this, sounds childish, but I get so emotional and frustrated I can’t grasp what needs to be done. Sorry to be a downer.

[mamabear]

#1063832

shale72701 wrote: I am very impatient and angry and hate having to disclose my personal issues to the drs. over and over again. I just hope that I will feel good again, logically though I know I need to go in and see the dr. not taking any medicine is only going to make things worst. I try to say to myself it isn’t a big issue to be hyper, and I don’t need to go in. I am confused, I guess I am looking for someone to come with me and to guide me through this, sounds childish, but I get so emotional and frustrated I can’t grasp what needs to be done. Sorry to be a downer.

It’s ok to have a pitty party for yourself! We all do it… NOW that you have said it, lets start with getting your head back in the game. That might be hard because HyperT makes our minds wonder and we can’t stay focused but having someone…ummmm like me ” title=”Very Happy” /> nag you about going to the dr. might help! ” title=”Wink” /> Or I can peeve you off to a point where you’ll go just so I stop asking if you’ve gone yet! ” title=”Wink” />

YES you need to see the dr., call your general dr. and get in there to see him TODAY! Tell him you aren’t feeling well and need a sick visit.
If you see your general dr. you can ask him to call one of the endo’s to get you a faster appt., tell him how you are feeling. You don’t know if he will unless you ask.
Speak over and over and over again if you must…. why wouldn’t you? THis is your life, your heart… You have TWO CHILDREN to think of as well. How can you be at your best for them if you have a rock hovering over your heard with "Pitty Party written on it"…. Wash the rock off and lay it down and call the dr’s till they get tired of hearing you and get in to see one that will listen to you!
Emotional and frustrated come with the territory when it comes to graves’, this should be pushing you harder to get an appt at what ever cost is necessary… I mean like by yelling or crying to the nurse saying you can’t deal with it anymore. I come up with some stuff, don’t I ! Hey however it gets us in there to see the dr. is all that matters. Tell the truth too, but if its not working than pull out the tears and the "i’m not sure" stuff and cry a little if that doesn’t come naturally.

Once in the appt, you can ask your questions and not leave till you are satisfied. Write yourself a note to write all questions down and ask them from the paper. You will forget, Graves makes us ramble and forget things, so having that paper helps us check off the things we are sure we want to ask.

It is not easy by any means BUT you must take control, for your own sake and for your kids.
Does your husband know what is going on?
If not tell him and get his support on this… with two kids he will need to help you or another family member. SOmeone other than you must know and if the kids are old enough then you should sit with them and explain that you are sick there might be a time where they might see you sick and you need to explain to them about getting their dad, a neighbor or calling 911 if need be. These are just precautions, you just never know so rather safe than sorry. If they are young then dont because it will only scare them.

get an appt today!!! Please!

[Ellen_B]

#1063833

Hi Sarah,

I could not agree more with Kimberly’s advice,”…you definitely need to get into a doctor who can help you sort through your treatment options and get you back on the path to good health.

Do you need to have more information about how to locate an endocrinologist? I like the American Association of Clinical Endocrinologists’ website–www.aace.com. because under the doctor’s name you will be able to see all the doctor’s specialties including the one you searched for—thyroid dysfunction. Occasionally you can find a doctor who specializes in thyroid only.

You can get to the aace site easily by going to our website (http://www.NGDF.org.), click on the tab About Graves’ Disease and then Find a Doctor. By selecting a city you should be able to find a list of thyroid specialists to choose from in that city. If you live in a small city you may have to search in a city nearby that is larger to find one.

Most important that you find a thyroid specialist. If you need help, send an email to the Gravesdiseasefd@gmail.com giving me your phone number and a good time to call. You can also leave a message on our national office voice mail using the toll free number (877) 643-3123) and I will return your call.

Please let us know your progress. If you have difficulty searching for a doctor on your own I will be glad to walk you through the steps. We are here to help.

Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/

[Kimberly]

#1063834

Hi Sarah – Just one more nag to encourage you to *please* see a doctor about getting your hypERthyroidism treated. There are three different treatment options (anti-thyroid drugs, surgery, radioactive iodine) and yes, it can be confusing to sort through all of them. But the longer you wait to get treatment, the longer the healing process is likely to take.

Untreated hypERthyroidism *is* a big deal. This can cause bone/muscle wasting, heart issues, and a very serious condition called Thyroid Storm. Those on this board who have had TS can tell you that it is pretty much a guaranteed trip to the Emergency Room…and possibly a lengthy hospital stay. In some cases, it can be fatal. TS usually happens to patients who have not been properly diagnosed and/or treated…so the good news is that you can significantly reduce your risk of going through TS by getting started on a treatment regimen.

Please check back and let us know how you are doing!

[Author]

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