[megans]

#1018307

First, I am so thankful to have found this site!!!

I was just diagnosed with Graves. Saw the Endo last week for about 20 minutes (was referred by the GP because my TSH was low and my T4 was high and I had a lot of symptoms of hyper). Endo scheduled a Thyroid uptake and more blood tests and said he suspected Graves. He said if it was Graves, they would try meds for 1 year and see if I go into remission and if not we would talk about surgery or RAI. He gave me a perscription for Methimazole and told me to begin taking 30mg a day after the uptake and to continue the Propranolol and they would see me in 2 months.

After the test, I called them for the results. A nurse called me back and said the uptake indicated Graves. I tried to ask a question but it was clear she did not hve the answer and there was no indication that he would call me back. She said I need to take the meds and they will see me in two months. I was surprised, I thought I would have been able to talk to the DR or that they would have said more about the nodules, or at least set up a follow up blood test to check the levels – but nothing.

Is that typical? Do the levels need ot be measured to check on how things are doing? Do you think this is adequate care? Thanks for your thoughts and thanks as well for the wealth of wisdom in all of your posts!

[Bobbi]

#1063886

The treatment you describe is what I experienced with my GP, actually. The endo took a bit more time to explain things.

Essentially, having a suppressed TSH, and an elevated level of actual thyroid hormones (the T4, for example) is absolutely conclusive for a diagnosis of hyperthyroidism — and it does not matter what the cause is, it must be treated promptly. The drug prescribed for you, methimazole, is standard. What it will do is act as a chemical block to the production of thyroid hormone. The important aspect of things is getting precisely the right amount of methimazole so that enough thyroid hormone production is stopped to enable you to have normal levels of thyroid hormone. If you take too small a dose, you will stay hyperthyroid; too big a dose will make you hypothyroid. The problem though, is that it can take 6-8 weeks for a blood test to PROPERLY show how appropriate your dose is. So the time frame your new endo has indicated is appropriate, if not comforting.

We can be hyperthyroid without having Graves, but typically Graves is the dominant reason. And the uptake and scan test is used to determine that. The thing is, it doesn’t matter what is causing the hyperthyroidism: the initial treatment options are the same whether it is being caused by the whole thyroid running amok or just parts of it.

I do hope you are feeling better soon.

[megans]

#1063887

Thanks that really helps. A person I work with is hyper and they saw her after the scan, talked about options and saw her in 30 days to test levels. It is so new and that is the only other person I know with this problem so was worried. Your comments help me slow down and relax a bit.
Thanks!
Megan

[Kimberly]

#1063888

Hi Megan – I have been on Anti-Thyroid Drugs for about 3 years, and my initial follow up appointments were about 4 weeks apart. One thing to watch out for is that a few patients will respond super FAST to the Anti-Thyroid Drugs. (I was one). If you start to experience symptoms of hypO, I would encourage you to call your doctor’s office and get labs run sooner than your scheduled appointment. Symptoms of hypO vary from person to person, but a few of the common ones include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation.

Also, if you find your symptoms getting a lot *worse*, I would encourage you to get labs checked again in a few weeks. Finding the right dosage of ATDs is part science, part art. As patients, we need to be in tune with our bodies and know when our hypER symptoms are getting worse…or when we seem to be shifting from the hypER to the hypO end of the spectrum.

Finally, keep in mind that your relationship with your endo is going to be a long-term one. If you don’t feel that this doctor’s office is effectively addressing your concerns, you might consider checking to see if there are other options in your area. A couple of good web sites for endo referrals are http://www.aace.com/ and http://www.thyroid.org/. If you use the aace site, be sure and select the specialty “thyroid dysfunction” — many endos specialize primarily in diabetes, and aren’t as familiar with thyroid issues.

[mamabear]

#1063889

call the dr.’s office and ask for a phone call back from him NOT his nurse.
Explain your concerns and if he feels this phone call is taking too long then you would be happy to make anohter appt for follow up care.
You do not need to start the meds without consulting the dr. first. YOU ARe the patient and they work for you, yes they are the dr’s but you are the boss of you!
If they blow you off, seek another dr.
Personally they get one try with me, if bedside manner stinks, I kick em’ ta the curb! LOL

This is standard for some dr’s but some need a wake up call saying wow they patient wont be treated that way so I better fix this. Others dont care and those are the ones that I dont go to.

Call them and ask to talk to the dr. if they say no then make appt. then see dr. and ask him why he never called you, graves is serious and you were left out in the dust with a phone call from a nurse who didn’t give you anything other than take it and we’ll see ya! What about side effects and talk about meds you can’t take and stuff like that?

You ARE your best advocate! SPEAK UP or you will be walked on. I know it stinks and it’s tough but you can do this.!

[fj122876]

#1063890

I had a similiar issue with my endo to the point where I was thinking of switching Drs. My husband suggested I schedule a consult with my endo before I switched and it was a great idea. The consult gave me an opportunity to sit with him and talk about all my questions and concerns. I also found out while talking to him that he wasn’t aware I had called with questions because his nurses will answer questions they feel he”s to busy to answer. He suggested in the future to be very specific and tell the office I want to speak to him not a nurse. So if you have time I would suggest scheduling a consult. It will give you the time you need to have your questions answered and give your doctor a chance to get to know you.

[megans]

#1063891

Thank you each for your insight and assistance. I will definitely keep a close eye on my own health and watch things, as well as do a little research to see what options I have. I felt like this was all pretty serious (and my symptoms felt very serious) and I know we have to work to manage it, but their response was so nonchalant I thought I was overreacting. Thanks to each of you for helping me find some balance and perspective!

[snelsen]

#1063892

agree wholeheartedly with last response..fj122876
All relationships take time to develop. I do not find your first experience with the office outrageous,but certainly at this time you needed more information and a framework to understand it. You are entering a new world, it is frightening. I think knowledge is very reassuring. Both Kimberly or Bobbi gave great answers. Unfortunately, EVERYTHING about Graves’ takes time, and labs that are done too soon do not reflect a true picture of where you really are. Your questions to this site are well thought out. It seems a bit early to burn the endo bridge. Not sure how the office works, but usually I simply call, make an appointment to see the doc. Endos are super busy, so expect it to be a few weeks. For the future, generally, when I do have an endo appt, I make the next one on the way out.
I do not know if you email, or if he does. docs vary on that. But I handle a lot by email, too .
Another important suggestion. Either:
1. Call office, ask them to mail a medical release of information form, fill it out, and have all dictatated records, office visit, etc, labs, sent to you. Then you can review his conclusions of the visit. I have ALL records, could not possibly remember everything if I did not have them. I can go to a visit, have the doc very patient, very nice, answering my quesitons, and go home and think ‘WHAT DID HE SAY?". Or ask for the form at the desk when you check in next time you go.
Also-be sure you learned from the pharmacist side effects of the drug, and what to be aware of.
I am sleepy, good night.
Shirley

[megans]

#1063893

Thank you all so much. I did call the office back and while I did not talk to the Dr I was able – through a few return calls – to get my answers. I am one of those people who just need information then I am okay. Having a site like this is incredibly helpful. Thanks to each of you who posted!! I really appreciate the support (and feel supported)!!

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