[kararoot July 17, 2012 at 5:21 pm Post count: 4]

#1059210

I was diagnosed with Graves’ at the end of May after scary heart palpitations, and discovered I had many of the symptoms for a year or so, and just hadn’t connected them. I went on Methimazole and had to discontinue it after 3/12 weeks because I broke out in hives. My Endo has been fairly aggressive about suggesting RAI, but I have lots of concerns about that, and would like to try meds for while before jumping to an irreversible action. I restarted Methimazole a couple weeks later – splitting the daily dose into two, and adding an antihistamine. It’s been 2 weeks and so far no hives.

Today I saw the Endo and while my thyroid numbers are dropping, my liver labs had tripled. She agreed to let me wait it out 4 weeks to see if they drop, but then really wants me to do surgery or RAI (which she far prefers). (She won’t prescribe PTU because she says FDA now recommends it for no more than 3 months). She seems very knowledgable, but she is abrupt, and today, as I was leaving, she said, ‘You seem to know so much, how about next time you tell us what we’ll do?”

I am also seeing an Integrative Medicine doctor to work on the autoimmune side of things through nutrition, stress management, etc. in hopes of avoiding radiation, but I’ve been at that for all of 3 days…

Now it seems I likely have 4 weeks to decide what I am going to do. RAI- I don’t want to be away from my kids for several days, and I struggle with the idea of bombarding a healthy organ with radiation and stimulating an immune response from an already overactive immune system. I’m worried about possible eye effects. I’m worried about being hypo after hearing so many stories (and reading online, of course) of people struggling to get the levels right, and dealing with the struggles of hypothyroidism. I don’t want to exchange one disorder for another.

My Endo has made a note that I am “strongly opposed to RAI, and would prefer surgery” (I know because she makes her notes with me in the room), but I don’t know what I would prefer. I am worried about surgery complications and hate anesthesia, but I might be more nervous about radiation-?

I’m scared, I guess. And I don’t want to make a wrong decision. I also am wondering if I should seek out another Endo-?

Mostly, I am wondering if people might be willing to share:
If you chose surgery – why? What was it like? Are you happy with your choice?
If you chose RAI – why? What was it like? Are you happy with your choice?

Thanks.

[kms1246 July 18, 2012 at 12:50 am Post count: 14]

#1172983

I have had very similar feelings and an endo who in the course of a year seen her once….she always had us see her nurse. My son was diagnosed 18mos ago at 14. I switched his doctor and he is having surgery tomorrow! I was very concerned with RAI. I did research and feel much more comfortable with surgery. Not that I made the decision I had to let him make the choice. At sixteen I needed him to make an informed decision so we met with a surgical team and a nuclear medicine team. There are pros and cons to both he opted for surgery because he felt the RAI would take to long for positive results.
You really need to be comfortable with your doctor and on the same team they should not make you feel like you can’t ask questions or have concerns. You are in the drivers seat everyone else is along for the ride! Good luck to you.

Kim

[adenure July 18, 2012 at 6:48 am Post count: 491]

#1172984

Hey! You sound like me, exactly! I kid you not! I was diagnosed with Graves after having my 4th baby. I was on methimazole for 7 weeks (5 mg) and my liver enzymes were 8 times the normal level. So, obviously I had to stop the methimazole. Fortunately, my thyroid level stayed normal for 6 weeks & I had the surgery 4 weeks ago. I didn’t want RAI either for many reasons (my children, I’m breastfeeding, eye worries, waiting for it to die, might not work the 1st time etc etc…). My surgeon was GREAT! He did a super job and I had no complications at all. I’m healing well from the surgery and am happy with my decision. That being said… the hormone ride isn’t quite over as my body is trying to make heads or tales of my hormone right now. I’m on 100 mcg. of Synthroid and my TSH is mildly hypo, yet my T4 is at the high range of normal. I experience mild hyper & hypo symptoms together- weird. But, in 3 weeks I get another set of labs and we’ll hopefully go from there and start getting things normalized hormonally. I really hope so. Whether you choose RAI or surgery, the hormones will be dealt with one way or the other. Same with ATD’s. I do feel better than when I was hyper and even when I was stabilized on methimazole. So, the surgery was the right choice for me. I’m just hoping to get my hormones squared away sooner than later, but I know it takes time.

As far as surgery recovery, the first 48 hours are hard (but not impossible, I only took Advil for pain). Day 6 I felt better. My voice was weak and tired easily for 3 weeks. It’s fine now. I took Tums for 3 weeks while the parathyroids were inflamed. My calcium has been tested and is fine now. I needed the Advil for about a week I’d say, then no medicine. I am very happy with my choice as far as how to deal with Graves. If I could have stayed on methimazole, I probably would have. But, it wasn’t an option.

Alexis

[adenure July 18, 2012 at 6:48 am Post count: 491]

#1172985

I started the Synthroid on day 2 after surgery as well.

Alexis

[Bobbi July 18, 2012 at 6:57 am Post count: 1324]

#1172986

Any medical intervention has it’s pros and cons, kararoot. In your decision between RAI and surgery, you would be well-advised to base your considerations on facts and not fears. One of the basic facts that I think you need to know is that you can live well without your thyroid. Yes, there might be bumps in getting your replacement hormone levels properly fixed. There also might not. Nevertheless, some folks online do complain a lot about not getting things right, and I can tell that those posts have fed into your fears. The problem is — boards like ours are skewed towards illness, and towards problems. In the real world, healthy people no longer need these boards for support. Take a look at our archived posts. The problems are the same, year in and year out. But the posters are different. The names change every few months as people get treated (by whatever route) and get their health back. THIS board tries to keep a few of us who have indeed regained our health to provide a bit more balance to the posts.

As to trying to save your thyroid. That would be fine if the meds were not threatening your liver. But you cannot live without your liver. You can live, and live well, without your thyroid. If the meds are damaging your liver, you must make a choice between RAI and surgery. I had RAI and got well again. My mother had RAI 25 years or so before me, and got well again. Shirley here on the board had surgery, and got well again. I have several personal friends who had either RAI or surgery, and got well again. The normal course of events is for the replacement hormone to give us our health back. It works, and works well for the majority of people who are on it.

Wishing you good health again.

[gatorgirly July 18, 2012 at 1:17 pm Post count: 326]

#1172987

Hi kararoot,

Being diagnosed with Graves and facing a decision on which treatment route to take is an extremely scary and stressful time. The last thing you need is an attitude from the one person you are supposed to be able to trust your health with. When I read what she said to you, my jaw dropped. I can only think of one word to describe that kind of behavior from a physician (I worked in healthcare until February, and I know her type), but I don’t think I’m allowed to say it on here. Please find a new endocrinologist. One who respects your knowledge on YOUR condition. I feel so blessed every time I come on here and read these horror stories of people with jerks for doctors. Both my old and new endocrinologist (I moved from FL to MA) appreciate my interest, knowledge, and commitment to understanding Graves. They even share medical journals and clinical studies with me because they know I’m a nerd and like reading that stuff. I’m not saying this is the extreme you need to find with your endocrinologist, but accusing you of trying to do her job is ignorant – it sounds like she is not at all interested in your willingness to learn so you can make the best treatment decision for YOU.

And I’m sure one of the facilitators can share with you the information on why you need a traditional physician as opposed to the integrative health doctor in treating your Graves. Sure, nutrition and stress affect our overall health, but neither of those can cure Graves.

For whatever it’s worth, I chose RAI. It was a six-month journey from RAI to hypo so I could begin Synthroid, but I’m happy with my decision and would make it again. I am doing well, and preparing for OD.

[beach45 July 18, 2012 at 4:20 pm Post count: 178]

#1172988

Kararoot,

It is not easy making a decision as I was there not long ago. I was on Methimazole 20 months and up and down like a rollercoaster with no endocrinologist getting me balanced so I was given the choice of RAI or surgery this past April 2012. I decided on RAI. I am 11 weeks post RAI yet I feel better than I did on that ATD Methimazole and have had some issues of weight gain from that drug and never lost it even when I went hyperthyroid again, yet the RAI part was very easy. I had 15 millicuries and was told to stay away from adults 2 whole days, my cats for 5 and I know for children it may be longer too. So right now I’m pretty okay with my decision and hoping that I go eurothyroid or hypothyroid soon, yet it is not so bad and if I had listened to all the horror stories on the Internet, I would not have gotten through. My thyroid eye doctor was okay with me having RAI even with moderate TED and so far I’m good and actually my eyes feel better. Eye doctor will be monitoring this for at least a year. My endocrinologist will follow me for a year also and then I move on to my regular doctor. I know some who had thyroid surgery who had families and did very well. I know people who took RAI and acted like why am I so afraid as they did it and are doing very well now years later. I am very selective of what I listen to and believe on the Internet. This is an autoimmune disease and one endocrinologist that I consulted with recently told me whether you have RAI or thyroid surgery, you can get TED as it runs it’s own course. Yes having Graves predisoposes us to other autoimmune diseases. Why I found out it is even more important to take extra special care of myself. My Functional/Integrative doctor said he could not “cure” my Graves and I would probably end up doing RAI or TT if the ATDs did not put me into remission, which they did not, yet he said he could help me more after RAI than prior. I was warned not to play around with natural remedies to so call cure this disease.

My current endo who is a thyroid specialist too said that yes we are trading one problem for another yet hypothyroid conditions are easier to manage and he said with hyperthyroid conditions it effects the heart and the bones. We have a better chance of getting back to normalcy with being hypothyroid and yes some people have more of a struggle than others yet I hear many success stories. I also believe I have had a hard time because I had untreated hyperthyroidism for years that doctors were not catching and being told I was “slightly hyperthyroid” yet never getting further testing; at that time back in my 30s I had no clue what thyroid did and nor cared and wish I had known as much as I do now.

I researched medical journals and reliable medical articles and books written by MDs and got a lot of good information from the facilitators here and information that is posted. I learned not to go by hearsay. It can be scary yet the fears I had back 2 years ago when this started for me are no longer there and I believe in time I will be back to feeling even better than before.
After doing research, then I could make an educated decision of what to do.

To answer your questions direct, I chose RAI due to what I found out from research and talking to different doctors, my husband’s cousin who is an anesthesiologist who had RAI 20 years ago and is doing great for years said she cannot understsand why so many choose TT as she puts so many under who have TT for Graves and she said RAI is so much easier (yet she wasn’t the deciding factor for me to choose RAI) and I had surgery myself in 2009 and it was a nightmare recovering for months; it was so easy as the isolation thing was the worst part being away from family yet it went quick, and right now I am happy with it as I am seeing that I’m feeling better 11 weeks later; heavy still yet happy and I’m not worried because once I get to balance, I think a lot of things will fall into place with my efforts too.

Good luck with this; I know it is not easy….beach

[catstuart7 July 18, 2012 at 5:30 pm Post count: 225]

#1172989

Hi Kararoot, I’d encourage you to seek out another endo for a second opinion. Given that your endo seems not interested in a partnership type of doctor-patient relationship, it might help you to feel good about your decision to talk to someone else even if you stick with the first one. There are people on PTU for years, there is no 3 month limit. There was an FDA warning back in 2010, but if you research it you’ll see that the worst outcomes were for children who took it. I’m on PTU myself and I do keep a super close watch on my symptoms. With this Graves’ stuff there is no risk-free choice no matter which way you go, so you have to pick what works best for you. Given that you’ve already had liver issues with methimazole, PTU might be a no-go but still I say second opinion.

About RAI, my endo is pretty conservative and pro-RAI, but she said one third of those who get RAI get increased TED problems. There is an option to take steroids beforehand that can minimize your risk of worsening eye problems. Then you have to weigh the protection of the steroids with the problems steroids themselves can cause. Surgery of course has the risks inherent to surgery and risk to parathyroid and vocal cords, but having an experienced surgeon good hospital etc. can help. So basically learn as much as you can so you feel satisfied with your choice – that’s what matters most!

[Bobbi July 19, 2012 at 6:37 am Post count: 1324]

#1172990

If the drug that has been demonstrated to have a smaller impact on liver function is causing liver distress, what in the world makes anyone think that the OTHER drug — which is known to cause more liver distress – is going to be an improvement?! Some people can tolerate these drugs, and some people cannot. Obviously, it is frustrating to be the winner of the “cannot tolerate the drugs” lottery. But other treatments DO work without risking liver failure.

[KimberlyOnline Facilitator July 19, 2012 at 9:41 am Post count: 4294]

#1172991

Hello – You might check out the “Treatment Options” thread in the announcements section of the forum, which includes a link to the 2011 guidance on treatment of hyperthyroidism from the American Thyroid Association and American Association of Clinical Endocrinologists.

The document goes through the pros and cons of each treatment option, and the section on Anti-Thyroid Drugs also includes recommendations on dealing with side effects (retesting, stopping meds, switching drugs, etc.)

Hypethyroidism itself can affect liver function, so you might discuss this guidance document with your doc. (Or even get a second opinion if you don’t feel like your concerns are being taken seriously).

Take care!

[VanIsleGal July 19, 2012 at 11:47 am Post count: 66]

#1172992

Hi! I haven’t had my surgery yet but this is what I have chosen after having Graves’ 3 times. The increased cancer risks with RAI scared me even though the risks are not large. I just couldn’t bring myself to do RAI. I have heard it is not used much in Europe where surgery is the favored method of treatment.

Keep in Touch and let us know how it goes! xoxo

[Bobbi July 19, 2012 at 2:13 pm Post count: 1324]

#1172993

I would point out the part of kararoot’s original post which said that while her thyroid levels had dropped, her liver values had “tripled.” I took this to mean that her liver function had been tested prior to the “tripling,” when she had been put on the drug in the first place. If that is true, then it does not suggest that hyperthyroidism caused the elevated liver enzymes.

[KimberlyOnline Facilitator July 19, 2012 at 5:38 pm Post count: 4294]

#1172994

Hi Bobbi – There’s actually one specific liver function measure that the guidance from the ATA and AACE notes is not as much of a concern if thyroid hormone levels are dropping and other liver function tests are normalizing: “In patients with improving thyrotoxicosis, a rising alkaline phosphatase with normalization of other liver function does not indicate worsening hepatic toxicity.”

Potential liver issues, of course, should never be taken lightly…so that’s why I suggested that kararoot take the ATA/AACE guidance to a doctor for further discussion.

[kararoot July 19, 2012 at 6:59 pm Post count: 4]

#1172995

Hi all – Thank you SO MUCH for your responses! It feels really good hearing from people who not only know the issues and lingo but know what it feels like to be, (as my husband calls it), “gravesy”, and weighing two not-great options.

Yesterday I got permission from my endo to drop the Methimazole from 10 mg to 5 mg (she probably would’ve given me permission to try an all-chocolate diet if I had asked- so sure she is that in four weeks we’ll be back at the decision place between RAI and surgery no matter what we do), but I have decided to remain hopeful that the enzymes will go down.
(FYI – they were elevated when I began treatment, but have tripled since then).

I will check back in in 4 weeks, and in the meantime I wish a speedy recovery, and health to you all who are in process! Again – I am SO GRATEFUL for your stories!

[KimberlyOnline Facilitator July 20, 2012 at 8:57 am Post count: 4294]

#1172996

Hi kararoot – Yes, definitely keep us posted. Hopefully, you will see things settle down, but in the meantime, do be aware of symptoms of potential liver complications, which can include fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes. Some resources also say that pain in the upper right side is a potential symptom as well. If you experience any of these, definitely let your doc’s office know right away.

Take care!

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