[acgaravalia]

#1019279

Hello! I just had my 2nd radioactive iodine uptake test, and I am not sure what to think. This has been done before, MD never told me that I had Graves, but the Radiologist report stated Graves under Diagnosis on paperwork. That was a year and a half ago. I began having swelling into my trachea about 2 months ago, and its getting hard to swallow. Anyone else have this problem? Is there a way to reduce the swelling without surgery? I really think its time for me to see a different MD. Hope this makes sense, I just have no idea what I am talking about! Little did I know 2 yrs ago that my RACING heartbeat had something to do with my thyroid! I thought my heard would explode! Still have those episodes every day about noon. I am just so confused!

[mamabear]

#1070506

welcome you found the right place!!! There are many here buts its late and I’m sure there will be responses tomorrow as the day goes. I will post tomorrow when I have time. I just wanted to say hello and hang in there!!!

[Ski]

#1070507

When we have a thyroid imbalance (in either direction, hyper or hypo), our thyroid can swell up. I have seen people here with difficulty swallowing because of that. Any treatment that brings your levels back into the normal range can relieve the swelling, so it’s time to learn about your options and make a decision.

It’s pretty scary, but a lot of doctors know of all the options, yet will make the decision FOR you and not even let you know you have choices. You can start with medication, which can bring your levels down rapidly, and then you can investigate the other two options, to see if either one appeals to you. In the process, you’ll learn how you feel while you’re on the medication, and how your body reacts, which can give you good information for later on as well.

Very simply put, here are the three options for treating hyperthyroidism due to Graves’ Disease:

ATDs (anti-thyroid drugs). These come in two "flavors," PTU and methimazole. They each work slightly differently, and there are some other differences. You can take methimazole once a day, you need to take PTU several times. PTU tastes awful. Methimazole has no taste. PTU is recommended for women who are either already pregnant, or who are pursuing pregnancy soon. You take these meds in a rather high dose at first, bring your levels into the normal range, and then figure out which (usually very low) dose will maintain your levels within the normal range. Do this for a couple of years, then you can stop taking them to see if your body has achieved remission. About 40% of patients achieve a successful remission the first time. Remission is NOT "cured," but it is defined as a period of time when your thyroid hormone levels remain normal, and stable, without taking any form of ATD or thyroid hormone replacement. Antibodies can flare later on and bring symptoms back, which would give rise to another decision on how to treat your condition.

RAI is radioiodine. This is a radioactive isotope used to destroy the thyroid. We take a rather small dose (thyroid cancer patients receive doses that can be up to 10 times the doses we typically get), and the thyroid takes it up, which destroys it. It can take a little while, months perhaps, until it’s completely gone. After your levels drop into hypothyroid ranges, you start taking thyroid hormone replacement and find your normal level that way.

The third choice is surgery to remove most, or all, of your thyroid. Sometimes the tips are left behind in order to continue hosting the parathyroid glands, which parasitically rest on the tips of the thyroid. Those regulate the calcium in your body, so risking damage means a new problem to consider after surgery.

This is FAR too simplistic to make any decisions from ~ each of these treatment choices carry risk, and it’s impossible to say exactly how you will react to any one of them. Sorry about that ~ just when you were feeling like you had it all under control, right? ” title=”Wink” /> This is why we suggest starting with meds, because it’s not a permanent solution, so can be "un-chosen," unlike the other two options.

Visit often, read much, get some of the recommended books on our list, either buying them online or finding them in the local library. One of my favorites is "Graves’ Disease: In Our Own Words," which is culled from posts on the old bulletin board, plus some specific information about particular issues (children with Graves’, family issues, work issues, finding a new doctor). This is complicated, you’ll be recovering for a while. Take your time and find your footing.

[RhondaG4]

#1070508

Acgar,
I really hope you are seeing an Endo doc and not just a family MD???? That would be my first place to start if that is the case. Not alot of MD know how to treat Graves. That is why they have Endo’s. That is there specialty. If you are seeing an Endo…sounds like maybe you need to find a new one?

I hope things get better for you soon in the near future. Educate yourself as much as possiable. Sometimes the docs would rather we not and let them just treat us. Stand up for yourself and don’t let a doctor choose what they want to do to you. If they suggest something, ask them why they think that is the best option for you. That is where educating yourself comes in handy…..as to your treatment options. Maybe even print out the treatment options so you can refer back to them in the office if you need to. And if your comfortable, take a spouse or a friend with you, or even a pocket tape recorder to refer back to. Graves is famous for messing with our memories, as I’m sure you’ve already noticed.

Mostly, Welcome. This is a great site with awesome people who understand. They seem like a second family to me. Hope this helps. Hugs Rhonda

[ely2009]

#1070509

I, too, had swelling. In fact that was one of my first symptoms – to me it felt like something was constantly stuck in my throat, like when you have a cold and can’t get the mucous to come up or go down. Gross, i know. But it wouldn’t go away for months. Ive been on methimazole since mid-March and the swelling has gone down. Sometimes i still get that feeling, but not constantly.

The beginning is nerve-racking because there is so much to process and generally you don;t feel very good at all. It does get better – takes patience and time, but it’ll happen.

Emily

[acgaravalia]

#1070510

Thanks, everyone! Sorry, I haven’t been able to get back online until today… 2 small kids and a hubby! ” title=”Smile” /> I am still seeing a primary, and I am not happy at all. They took blood MONDAY of last week, and never called me back. Maybe they wanted to wait for the uptake results… who knows. Hopefully, she will call about a follow-up soon, and I will know more then. Thanks for all the great advice and support! Alice

[acgaravalia]

#1070511

OK, got a call today from primary (nurse in the office). She VERY pleasantly states that my labs were "normal". I am SO frustrated. Then WHY is my thyroid swelling into my throat, WHY can’t I swallow right, then WHY is my heart racing every day to the point that I think I am going to have a heart attack?! I am so angry right now. It is so hard for me to get of work for all of these tests, plus I pretty much pay for the out of pocket due to poor insurance… I want some answers! I am so sorry for venting, but I am sure that the old tests were right, as I have all the symptoms of GD…(except for the eye problems…) I am just so angry…. why won’t they tell me anything? Why is it that they act like nothing is wrong?

[Hopeful23]

#1070512

Okay. I can relate to this. I had thee exact same problem. I HAD ALL THE SYMPTOMS OF GRAVES. My levels were normal and than boom they were so bad it was scary. Stay proactive and please get an endo. This is their speciality. Its what you need. Good luck stay strong.

[Ski]

#1070513

Make sure your doctor is testing your FULL thyroid panel, to make sure you can see a recent imbalance. The main thyroid hormone usually tested is TSH, but it is a hormone from the pituitary released in reaction to a sort of "running average" of your active thyroid hormones, T3 and T4, over weeks’ time. If your active thyroid hormone levels have risen substantially recently, the TSH may not have had time to react. Remember too, the possibility exists that you aren’t suffering a thyroid imbalance ~ one of the things that makes thyroid disease so difficult to diagnose is that its symptoms mimic many other conditions. Once we have Graves’, it’s also easy to think everything is from Graves’, and it isn’t always so. Make sure you continue the conversation with your doctor if the initial suspicion is not confirmed ~ "doctor, I know these symptoms are abnormal, so please help me find out what IS the matter, if it’s not my thyroid."

[samantha]

#1070514

hi my daughter is 13yrs old and had an underactive thyroid that was diagnosed last year an she was taking thyroxine .In february this year she took very ill an ended up up in alder hey hospital we were then told she had an overactive thyroid an her meds where stopped . her thyroid level kept goin up even though she was of all meds it went up to 60 an then they said they would treat her so she was given carbimazole propranolol and antiesickness it had been two months by the time she started 2 feel well in herself an was able to come home but why she was home she would complain about not feeling well all day every day and her feet ankles shins had swollen she had a large red patch on her leg that was lumped her eyes where very swollen almost like they were coming out of her head she had a reveiw at the hospital and was kept in they then told us this week that she has graves desease since we have found out about this we dont feel like we have been given alot of information as to what are the long term affects as they also say she has graves desease of the eyes aswell and has very high levels of inflamation in her body not sure what that means my daughter is still in hospital now and is having a byopsey on her legs on tuesday i would appreciate it if anyone can give as much infomation on graves in a child so young and if anyone has had the same experince also what are the long term effects thankyou so much for taking the time to read.

[ely2009]

#1070515

My first round if blood tests were "normal" too. But I KNEW I was sick. I pressured my GP to keep looking and sure enough, 4 weeks later I was technically hyperthyroid. I had all the classic symptoms as well. One of the things I’ve learned is to be persistant. No one knows your body like you.

Good luck.

Emily

[samantha]

#1070516

hi my daughter is 13yrs old and had an underactive thyroid that was diagnosed last year an she was taking thyroxine .In february this year she took very ill an ended up up in alder hey hospital we were then told she had an overactive thyroid an her meds where stopped . her thyroid level kept goin up even though she was of all meds it went up to 60 an then they said they would treat her so she was given carbimazole propranolol and antiesickness it had been two months by the time she started 2 feel well in herself an was able to come home but why she was home she would complain about not feeling well all day every day and her feet ankles shins had swollen she had a large red patch on her leg that was lumped her eyes where very swollen almost like they were coming out of her head she had a reveiw at the hospital and was kept in they then told us this week that she has graves desease since we have found out about this we dont feel like we have been given alot of information as to what are the long term affects as they also say she has graves desease of the eyes aswell and has very high levels of inflamation in her body not sure what that means my daughter is still in hospital now and is having a byopsey on her legs on tuesday i would appreciate it if anyone can give as much infomation on graves in a child so young and if anyone has had the same experince also what are the long term effects thankyou so much for taking the time to read.samantha.

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