[powergrrrl29]

#1071673

Hi,

What kind of adverse reactions did you have to the meth and PTU? Your doctor doesn’t seem too sharp if he treats hypothyroidism with diet and excercise. How about thyroid replacement treatment. Scary. Is it possible for you to get another doctor for a second opinion especially since you aren’t able to talk to this doctor.
Are you on beta blockers to control your symptoms for now?

Lisa

[Ski]

#1071674

Graves’ is so complicated, I wish doctors took more time to explain things to their patients….. Bottom line is that we do not have a way to remove the antibodies from our bloodstream that are tricking our thyroid into producing too much thyroid hormone, and since hyperthyroidism left uncontrolled can be very dangerous, our options are limited once we have finally gotten the right diagnosis. Without being able to use the ATD meds (methimazole or PTU), the only other options are RAI or surgery to remove the thyroid completely, because there has not been any success demonstrated in lowering thyroid hormone levels by any other method than ATDs, RAI or surgery.

It is relevant to find out which symptoms you had using ATDs, because sometimes those effects can be alleviated just by taking a lower dose of the ATD. Others are life threatening and cannot be "worked around." Speak frankly with your doctor about the details, do not allow the doctor to wave you off with some glib remark. Also, if you don’t feel that your doctor is giving you complete information, or proper consideration, it is definitely worth your while to go looking for a doctor who will. This is going to be a lifelong issue ~ not that it will always be a problem, necessarily, but you’re going to need a team member to help you through this, and you’ll have lifelong contact with that doctor, so it’s worth it to find the right one for you.

At this point, if you are truly precluded from using the meds, you do need to make a decision rather quickly, which is tough. Some people have a visceral reaction to RAI itself, but it sounds as if your hesitation has more to do with removing the thyroid completely, so surgery is just as distasteful when that’s your issue. I always recommend learning as much as you can about Graves’, about what it’s doing to your body and how.

You are correct when you say that hypothyroidism is not a good condition either ~ the difference is that when you go hypo because you no longer have a thyroid, you take replacement thyroid hormone to give your body the T4 the thyroid would have produced. You don’t stay hypo. When we are hyperthyroid from Graves’, our levels can climb and fall (mostly climb), and without ATD meds, there’s no reliable way to find and hold a stable, normal point in the thyroid hormone normal range. When you’ve had RAI or surgery, you know that you are going to be hypo, so there is usually not much time between going hypo and beginning to take thyroid hormone, which minimizes the time you spend being hypothyroid, thus limits the risk of being hypothyroid.

[amandacheson]

#1019443

Hi All… I am so glad that I found this website tonight… I am 25 and was recently (about 2 months ago) diagnosed with Graves Disease and have since had some problems with treatment… I had adverse reactions to both medications (methimazole and PTU) and now my doctor informed me this past Friday that he wants me to being the RAIT… I am so scared becuase I have been told from the beginning that everything would be okay and that we could take some meds to make "everything better" but this has not been the case at all… I work full time and go to school for my Masters full time and I think its all gonna unwravel any second if I cannot get this under control…

I dont understand and cannot understand why we need to kill a part of our thyroid to make this better!? Are there other risk factors associated with going from Hyper to Hypo and isnt there something else that I can do!? I have tried to be completely proactive throughout this time but I have a terrible feeling about the RAIT… I feel like I am at a loss and my Endo has the worst bedside manner EVER so I feel like I cannot talk to him!!! Friday I asked him what I would do if I became hypo and he told me "do it the old fashion way, exercise and diet"… I dont know if I am overly sensitive right now but I was really offended!!! I just need some advice and I want to thank everyone for their posts… I have found all of your words to be helpful already!!!

Again thank you so much!!!

<3 Amanda

[hyperm]

#1071675

Hi Amanda,

Firstly, welcome! If you look at the numerous new members I think you will see a similarity in how you are feeling- the rest of us who have been diagnosed a while ago will all most likely tell you that we all felt the same too. I was petrified and daunted. So deep breath and try to relax.

Your endo sounds like my first endo – how do I put it diplomatically? – Rubbish! ” title=”Wink” /> I changed endo’s and what a huge difference. I would have to agree with Ski that his response isn’t exactly reassuring – is it possible to ask to change endo’s? You have that right.

I think you are right in what you are saying about trying to study and being scared of whats ahead. GD can make you feel completely washed out and lathargic. I know alot of people who have had RAI – 2 personal friends and I must say they are fairing better than me. ” title=”Smile” /> It is a very scary thought and to add to that is trying to cope with a new diagnosis. What was the problem with ATD? To be honest with you I haven’t had RAI but I think that if I had been offered this treatment a few years back, in hindsight I would have taken it. I know I felt tired and not particularly great being hypo but it wasn’t as bad as my hyper states.

Hang in there – try to think practically…if i had changed endo’s sooner I would have been in a better position at a time where my health was very poor and like you I was trying to work (part-time) and care for my first little boy. First course of action try and find out how you can change endo’s. if you are not sure why you have been taken of the ATD then find out – I had a problem with low WBC on carbimazole and they changed me to PTU.

You will great support on here, Ski and Dianne have a fantastic knowledge as well as personal experiences of this condition. Hang in there and keep posting we are all here to help.

M xx

[mamabear]

#1071676

Amanda,
If you go to school full time and are working for your masters degree AND work full time as well YOU ARE stronger then you think you are. DO NOT sell yourself short, having to that type of balance is hard work.

Tell your boss, teachers,parents,friends and anyone else you see often enough for them to notice anything that might change in you. At least if they know they wont take the angry mood swings to heart, or the crying for no damn reason or the hot flashes….and well the list can go on and on.

Yes there are side effects to both meth and ptu, how long were you on them before the dr decided to take you off of them? Did he give it enough time to see if your body got use to the side effects? Were you unable to deal with them and asked to be taken off of them?

As far as your dr. is concerned, I would throw him to curb. Personally at the age of 35 I will not tolerate any dr. with a bad bedside manner. I have realized that any dr. with a bad bedside manner IS NOT a good dr. They might know what they are talking about BUT any dr. that has a poor attitude is only in the business for money and I don’t care if he/she is the last dr. on the face of the earth I’d rather go to the next guy down as long as the bedside manner is perfect. Yes I am very serious, last one on the face of the earth and i wont go to that dr. if they have a bad bedside manner!!! I have surrounded myself with dr’s that know me and know my attitude towards medicine and that I adore medicine and NEED to know everything and know exactly what anything is and need to know it right then and there. I can’t help it, that is just my nature and it helps me keep the dr’s honest because if they can’t keep up with me and my "no nonsense, get it done and over with, or find out what is wrong and fix it" attitude then I can’t have them for a dr.. My pediatricians are the same way and adore all of them, heck even my dentist. lol

You should not have to deal with a dr. that has poor bedside manners, you are entitled to a 2nd opinion and I would strongly suggest that you get one. But your point in all of this is not that he has poor manners it is that the medicine that you took didn’t agree with you. That is the reason I asked if you were on it long enough.

What ever you decide, YOU CAN do this!! You need the support either way from friends and family. You don’t have to go into details but you should let them know so they can help you. You are young and in a stressful situation with school and work, hard work isn’t easy but wanting your masters is a great accomplishment so try during this time to get as much rest as you can, laugh hard and a lot, don’t let the little things peeve you off. There are so many other big things out there that you can stress over, drama and little things are not worth stressing over. If your fighting with family or friends or a boyfriend of exboyfriend put down on paper , throw the paper out and be done with it. (yes doing that helps lol).

Good luck

[hyperm]

#1071677

mammabear – I love it – "curb him" thats my new expression now!

Absolutely right! If I hadn’t worked with the endo I had been seeing at the beginning then I would most definitely have curbed him! Infact he was very lucky he didn’t see me after the TS or I may done more than that!

However, as you say mamma bear I have changed also when it comes to medical professionals and I am one myself! After my little boy I bled for 11 weeks and was going off my head – it wasn’t a period. I was in hospital 4 times for investigations etc.. anyway you mums out there will know that the last thing you want after giving birth is an internal. On the 4th occassion a very rude female dr asked why "she" (that was me ) crying? The midwife answered because "she" has been in 4 times with the same problems. Anyway she had a student with her and said oh i’m going to do an internal to show my student. I just turned around and said "NO! you have done several in the last few weeks and I am not having any more – I’ve had enough I want a scan!" Her attitude towards me changed in an instant! ” title=”Wink” />

Amanda you need to be diplomatic but make a stand some doctors think they are God’s gift whereas in fact they are lucky they just passed a few exams!

hang in there!

M x

[amandacheson]

#1071678

I am so touched by all of your words I am actually tearing at work so I better close the office door before someone sees me!!! haha

There is a lot of information I would like to read through and reply to all of your comments if you would not mind…

There was one common question and comment that took me aback… "How long and why was I taken off of the Meth and PTUs"? To be honest I dont feel like he gave it a fighting chance… The side effect that I had to the Meth was hives all over my face, chest and shoulders… I would rather live with that than do the RAIT… Since I have been on the PTU (only 2, maybe 3 weeks) my skin has not cleared up so he made the hasty decision for the RAIT… I woke up this morning and my hives look better and they are no longer itchy… I feel like maybe my body needed a lower dose (since Friday my meds were cut in half)… I guess I am just down in the dumps becuase I dont feel like he is on my team or that he wants me to do the least invasive thing possible… Its just okay DO THIS now… I dont like not knowing what is going on with my body and right now I have a doctor that will not be strtaight with me and give me anymore information than a 1 sided sheet of paper that I could have printed off the internet…

I WILL BE CONTACTING A NEW ENDO TOMORROW!!! Any idea where I can find a specialist in my area!?

Also, Im gonna get out of this office so I will be back on later to ask some more questions and re-read your amazing feedback!!! I am so impressed with ALL of you and I truly ADMIRE your courage and support!!!

Thank you,

Amanda
” title=”Very Happy” />

[Ski]

#1071679

On finding a new doctor in your area: Check the main GDF website for a link to the American Thyroid Association ~ they have a search engine where you can look in your immediate vicinity. They don’t technically "recommend" doctors (and neither can we, publicly, though folks can send you private messages with their own input if you let us know where you are), but you can at least look up someone who specializes in thyroid conditions. Many endos have diabetes as their main practice area, so thyroid is secondary to them. I would recommend calling the offices of the doctors who pop up on the list ~ talk with the people who answer the phone and ask them about the doctor’s general demeanor, attitude toward keeping appointments in a timely fashion (but don’t ignore those who say the doctor will sit with you for as long as you have questions ~ it may make them later for an appointment, but well worth the wait), and then ask to speak with one of the senior nurses in the area so you can determine the doctor’s willingness to work WITH a patient, rather than just telling the patient what to do.

[mamabear]

#1071680

Ok I have to ask this… I was only on PTU, I didn’t have hives at all. So not sure about what i’m about to say but have to ask anyway.

What about Benadryl? Didn’t the dr. suggest that, is that something that might help the hives even if the hives aren’t itchy it might calm down the body and skin?

Amanda, as long as your health is not in danger and you are not ready for the emergency room with sky rocketing blood pressure and heart palpitations I’d say that your dr. doesn’t really have a choice in what you say yes and no to. If you wish to remain on the PTU he CAN’T make you do RAI. He is giving up because he doesn’t want to deal with, which I can understand. Treat it with RAI and deal with the Hypo later with supplement Thyroid. BUT YOU dont have to. If you wish to continue with it jsut tell him. Read about RAI and do your research on it and on PTU and ask questions about it and what might be best for you. If you feel the dr. is giving up to easily then ask him about it and give him a chance to explain. if he can’t then you’re still looking for a new endo anyway and it wont matter. lol

[mamabear]

#1071681

Right now don’t worry about replying to us individually if you are strapped for time. I’d rather see that you are working on getting a new dr. ” title=”Wink” /> ” title=”Wink” /> Oh call the dr’s office that just did your bloods and get a copy of your records. IF you were a new patient for him then don’t worry to much about getting them if they give you a hard time. They have to give them to you but seriously if you are a new patient and they give you crap for it don’t bother with them. as long as you have your lab results you are golden!!!!

[Ski]

#1071682

To be fair, allergic reactions to ATDs can be very dangerous, and can lead to anaphylactic shock if the med is continued ~ Benadryl would not be strong enough to handle that. This may be what the doctor was afraid of, since the reaction was rather severe. Give the doctor a chance to explain before condemning.

[mamabear]

#1071683

Again thank SKI for letting us know.

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