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Thank you for your kind words, Shakira! It seems that many people who have their thyroids surgically removed have the surgery performed by an ENT surgeon – it sounds like that is true for you? The doctor who did my surgery was an endocrine cancer surgeon. Have you had your surgery yet?
Despite the “setbacks” of the past 3 years – Graves, cancer, and vocal cord paralysis – I count and am thankful for so many wonderful blessings in my life. I am hopeful that the setbacks shall soon pass.
Best wishes,
This is an interesting subject for me. I was diagnosed with Graves in late Feb 2011 and chose to try methimazole to manage my Graves. I rode a roller coaster of blood level ups and downs for the year I was on the methimazole – we could never get my levels to stay in a steady place. Consequently, I bit the bullet and had RAI done 6 weeks ago. As I have mentioned in previous comments, I am a female, mid-40’s endurance athlete – longer distance trail running and cycling – and have never ever had to worry about weight issues. I have read all of the horror stories of post RAI folks who gained weight uncontrollably. I grilled my newer doc, whom I switched to prior to the procedure, about the potential weight issue/fear following RAI. She assured me that IF I was diligent about maintaining my NORMAL healthy diet and training (training level pre-Graves), then, once we had my Synthroid dosage dialed in, I would “revert” back to my normal self and the weight concern would be a mute point. Interestingly, she also mentioned adding cytomel to the mix if need be. I know that not all endos agree with using cytomel. She is part of a well respected endocrinology teaching, research, and treating team. At this point, all I have to say is, “Time will tell.” My heart goes out to all of those who do struggle mightily with weight issues – it is a huge fear for me – a fear I hope does not ever materialize.
And just a little tidbit for Kimberly since you mentioned struggling with weight issues while on the methimazole – The last few months I was on the methimazole, I started noticing a change in my weight – subtly so. Even though I was carefully monitoring my eating, and continuing to run and ride to the extent I could, I was starting to notice a gradual uptick on the weight. I had gained back the 10 pounds I had lost initially with the Graves early on so the couple of pounds increase was above and beyond my pre-Graves weight. And, the slight weight increase was not from rebuilding muscle. It looked like fluff to me!
That was the problem I noticed while on the methimazole – even though I certainly felt better than in my “acute Graves” state, I never felt “normal” and could never rebuild my muscle tone or endurance and was actually starting to see a gradual and incremental deterioration in my capacity to do the things I love – running and riding. For me, I was questioning the methimazole long term and that’s what pushed me to RAI. Anyway, I just thought to add that as an FYI. Thank you Kimberly, Bobbi, and all of the other moderators – you do us all a great service! This subject is near and dear to my heart! I am an endurance athlete – cycling and trail running and was diagnosed with Graves in Feb 2011. Long story short, I opted to try the methimazole before considering one of the other options (RAI or surgery). I am 5-6 and pre-Graves, hovered around 117 – 119 lbs. I lost a total of 11 lbs with the Graves. I looked like a skeleton. I also lost much of my muscle mass/definition. I have been on the methimazole for one year. I am currently hovering around the 118 -119 mark. A very important thing to remember here – everyone responds differently to the medication. For me, it did what it was intended to do – the methimazole brought me down out of the dangerous hyper state and allowed my to feel overall better. The problem, for me, which became apparent as the year progressed, is that I was not able to rebuild my strength, endurance, and muscle tone and in fact, saw an incremental deterioration in my training capacity as the year progressed. I improved somewhat but then started a slow backward slide. Part of my problem is that we were never able to keep me in a constant, steady range for extended periods of time. My thyroid levels were in a constant state of flux – always a little high then heading a little low and then heading a little high again – my dosage was adjusted according to my levels. Because of the fact that we weren’t able to achieve steady, consistent hormone levels combined with my slowly declining training capacity despite being on the methimazole, I opted to have RAI 12 days ago (I will post on that in a separate post – so far nothing unusual or odd has happened – my doc educated me about the various stages my body will go through). I would say that in the past month or two prior to the RAI, I was just beginning to see even more of a difference in my body composition (fluffier, not necessarily heavier) but that is due to continued diminished muscle tone – possibly heading in the direction of some weight management difficulties. The fine moderators here have done a great job in pointing this aspect out in many other posts. Graves causes muscle wasting. Less muscle results in less shapeliness and less fat burning energy.
Again, everyone responds differently to medication so don’t base your decisions solely on what you read. Base your decisions on a good doctor’s opinion, educating yourself, real-life/ in-person testimony, and reputable websites such as this one. It can all seem completely overwhelming and discouraging at the beginning but you will make it through, really!!! Hi Bobbi and Kimberly!
Thank you, both, for your thoughtful replies. My doc has commented that my body responds very easily and quickly to the methimazole. I took this to be a positive. I just have heard of the "block and replace" therapy, as of yesterday, and will ask my doc to explain that method to me when she calls.
Doc hasn’t been able to give me a good explanation as to the reason my levels have fluctuated so much on the methimazole. She just has said that everyone responds differently and that there is no ‘normal’ or ‘cookie cutter’ pattern to predicting each person’s response. I am due for blood results to come back today or tomorrow. Because I went so hypo according to my results from 3 weeks ago, she had me go completely off the methimazole for 2 weeks and then have my blood tested again – those are the results I am waiting for today or tomorrow. She said we would evaluate those results along with how I am feeling (I think going hyper again – night sweats, slight leg tremors, and increased heart rate, and very sluggish and lethargic – ha, ha, ha – I was feeling sluggish and lethargic when I was going hypo, too – it’s a no-win situation!).
” title=”Very Happy” /> Thank you for clarifying and helping to ease my worry about losing control of my weight if I end up having surgery or the RAI. That is certainly a very worrisome aspect, especially for an athlete. Also worrisome, are the potential risks posed with each procedure. So much to consider. I have had a few eye issues – mostly in the form of dry/grittiness, sensitivity to light, and some pain in and around my eyes – doc hasn’t been clear whether or not my eye symptoms would be a concern with RAI. I guess we’ll cross that bridge when we get there. Despite the ups and downs, I am incredibly thankful for the many blessings I have in my life. This is a speed bump in life and we’ll get over it eventually. Dealing with Graves has made me more aware and empathetic to others who are facing life altering challenges.
Thank you again for your thoughtfulness!
Thank you, Kimberly – you touched exactly on what I was looking for in terms of supplements – iodine. I wonder if anyone knows whether there is iodine in glucosamine/chondroitin (derived from shellfish). Just curious. I am also wondering whether or not taking in a little extra protein might help with the potential muscle wasting that Graves causes. The heart symptoms are scary, too. My heart related symptoms had improved a month or so ago but seemingly, coinciding with the methimazole dosage reduction 5 weeks ago, those subtly seem to be returning – not bad yet – but since I know what they are now, I am certainly taking note. A person starts to wonder about things – does my ATD need to be increased again, for awhile because the lower dosage isn’t controlling the Graves and that is why some of the symptoms are creeping back up? It is a bit discouraging when I was feeling pretty good 5 weeks ago, thinking I had turned a corner and things were going to only get better, and then start the slow backward slide the past weeks. It sounds like it is just the nature of the beast and this journey will be a lesson in patience. It is still early in the journey and I am learning a lot!
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