[JCC]

#1060119

First, let me say that I wish I had found this website 12 years ago. I’ve read a few stories and they have been very enlightning.

Here’s my story in a nut shell –
Diagnosed with Graves in 2005…I kept waiting for (and wanting) the weight loss symptom. I have struggled with not feeling well and my weight since the birth of my second child in 2001 (first child in 1996). Weight and total exhaustion were my initial symptoms and they were written off as “being a full time working mom” and “losing weight after having a baby at 30 is different than when you were 24” my T3 & T4 have for the most part been in the normal range and my TSH was only “slightly off”. Several years later the anxiety, insomnia and heart palpitations started, hot all of the time and sweating for NO reason and still I was unable to lose ANY weight and I’m not talking 15 pounds, 55 pounds is what I need to loose. Finally, after much nagging from family in 2008 I decided to see an ENDO, blood work was similar but since I had new symptoms he decided to try some medication, desperate to get some relief I went along without much knowledge of what was going on. I don’t even remember the dose of Methimazol but for 10 months I went in every 6 weeks had blood work done & his office would call me and adjust the dosage anywhere from a half a pill to one and half pills, my weight went up and down with the changing doses, but no relief for the other symptoms. I decided he didn’t know what he was doing, since I’m not a fan of taking medicine anyway I quit taking the Methimazol and never went back. I got a referral to another ENDO from a friend and in late 2009 I finally decided to give it another chance, labs still similar, TSH not off enough to warrant meds…come back in 6 months. Early 2010…labs still similar, no meds, “oh I feel something”, ultrasound showed 5 nodules, come back in 6 months. October 2010, 5 nodules were still the same size, labs still similar, still fat, toxic multi-nodular goiter, no meds, come back in a year. Got busy and frustrated – missed 2011 & 2012 appointments. February 18, 2013 appointment with ENDO’s assistant, went in with an ongoing hoarse voice & a feeling of a lump in my throat that I had started noticing about 4 months earlier. There was a RUSH of appointments, blood work, phone calls, uptake scan, ultrasound, 3 nodules doubled in size, 2 of the 5 nodules are “cold hypoechoic with micro-calcifications”, more phone calls and finally 11 biopsies. ENDO called on March 19, 2013 with great news that all biopsies were benign (thank goodness)! Got a second opinion about my options in April, and decided a total thyroidectomy was the way to go. Scheduled the surgery for mid-August as to not interfere with my summer camping plans. Camping is over, and now that I have nothing to distract me from all of this I’ve been thinking too much and reading even more and I’m beginning to second guess EVERYTHING.
I keep hearing “hopefully you’ll be feeling better once its out”…I don’t know that I know what feeling “better” feels like. I’m hoping it happens and quickly but from what I’ve read it will take time.
I haven’t seen much about having Graves & being overweight, how is that possible? I have read quite a bit about gaining weight after the TT surgery…Lord help me if this happens!
I’m wondering now if I had been consistent and more educated about my treatment, as it sounds like you all have been, if I could have avoided the nodules getting bigger?
The whole thyroid issue is complex, and to go from “being boarderline” and not ever really being on meds to having a TT is alot to wrap my mind around. I truly was beginning to think it was all in my head and not feeling well was my new normal…now I’m afraid it is going to get alot worse before it gets any better. Thanks for letting me vent & feel sorry for myself for a minute. I’m sure that during my recovery I’ll find even more to read on here.

[Kimberly]

#1180549

Hello and welcome – wow, you’ve been on quite a rollercoaster ride! We have several regular posters who are thyroidectomy “veterans” and many who have recently undergone this treatment. If you use the search function for “surgery” or “thyroidectomy” you can read many of their stories.

Weight issues and hyperthyroidism are just not well understood. Some patients actually gain while hyper. Others may struggle with weight gain during or after treatment, regardless of treatment option. Still other patients have no issues at all with weight. There aren’t any easy answers unfortunately, but focusing on whole, unprocessed foods and keeping a food journal to track intake can be helpful.

The “treatment options” thread in the announcements section of the forum includes a link to guidance from the American Thyroid Association and American Association of Clinical Endocrinologists, which goes over the treatment options for multi-nodular goiter. (You have to scroll down a bit once you open the document, as the section on Graves’ is listed first). You can also find more information on thyroid surgery on this site from the American Association of Endocrine Surgeons:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.endocrinediseases.org/thyroid/thyroid_background.shtml

Take care – and please keep us posted!

[Gabe]

#1180550

Hi JCC. Welcome to the best place to find answers, vent, get educated, and unfortunately still have more questions! We’re all real patients with a variety of symptoms and no two of us have experienced Graves’ the same way. I’m not sure I followed this in your post, but how did they actually diagnose your Graves’ back in 2005? Have you ever had your antibodies checked (TSI or TRab)? Did you have an ultrasound or uptake scan. Especially since your TSH, T4/T3 levels are reading so close to normal.

Even with all that you do seem like you have most of the classic Graves’ symptoms. There are a few of us who have recently gone thru a TT (myself, SueandherZoo, Talley, Amy, etc.)…and Shirley is the veteran TTer (50 years ago!). Please read a few of these journals for details.

I can’t answer your weight concerns and, as Kimberly stated, everyone experiences weight gain/loss differently. Once you have your thyroid removed you almost certainly will go hypO for a period of time…the length of which depends on your body, the synthroid/levothyroxine dose you start with, and how quickly doctor catches it (via blood work). Other than your concern about weight, I think you’lll find that the vast majority (however not all) of us who have gone the TT route are pleased with the outcome (so far). All of us had doubts, second guesses, third guesses as to whether it was the right decision. You will have the same conversations over and over with yourself. I found the best thing to do was write down everything, keep a journal, and make sure I found a surgeon that answered all my 64,000 questions and that I felt comfortable with. After that it became easier to make the final decision to move forward with the TT.

I wish you the best….stick around this forum…it’s a big help whichever path you take! Karen

[SueAndHerZoo]

#1180551

Hi JCC. Glad you’re here, but sorry you’re here (you know what I mean).

I had a somewhat similar experience in that I have felt overall “lousy” for many years but couldn’t really pin down why. My PC doc started noticing a goiter during my yearly physical about 30 years ago, but when he’d send me for lab work and uptake scans, everything was in normal range. But consistently every year he’d palpate my throat and say “Nice goiter! That thing is going to go kaplooey on you one of these days!” I have had lots of years of health issues and I can’t help but wonder how many were related to my enlarged thyroid but that was then and this is now.

In 2006 I went suddenly hyper and they got me on Methimazole and a beta blocker ASAP. We were able to get it under control and after a few years on meds I actually had a remission for about a year or two. But in February my thyroid went hyper again and this time we had a hard time controlling it…. we were continually raising the Methimazole dosage until I waved the white flag and said “send me to a surgeon – I want this thing out of here.”

Surgery was July 16th and I’m still home from work recovering and not knowing what to expect… I’m ready for anything (thanks to this forum).

I would suggest that you focus your time and energy on consulting with surgeons to find one that you feel very comfortable with. I believe one of the biggest factors (possibly the biggest) in how successful the surgery and recovery is lies in the hands of the surgeon. I am fortunate to live near Yale so I had a wonderful surgeon who performs 9 TT’s a week and really seems to know all about what the patient experiences before, during and after. I went into the surgery with total confidence in her and that helped alleviate almost all of my concerns.

I, like you, can only hope that after a TTI my health will finally be what we had always hoped for but I’m too soon out to tell you that for sure.

Keep reading, keep posting, and good luck!
Sue

[Talley]

#1180552

Hi there;

I’m not sure how long I have had Graves. I can say that I have had to work so hard to keep my weight “in check” over the years – like working out twice a day and doing various diets. I started Jenny Craig last year to lose 15 lb, and lost weight so easily…at the end of two months, I continued to lose weight even without the plan. I thought it was great – until the heart palpitations, tremors and heat intolerance got so bad…had testing done and found out I had Graves.

My numbers were pretty bad. I started on meds but was never very good about taking them and they didn’t seem to work that well with me. Also, I stopped losing weight and actually started to gain – back to struggling to keep my weight down.

I ended up having a TT six weeks ago – they found a small spot of cancer on my thyroid after it was removed so I am very thankful that I had the TT…

Other than the fact that I gained 8 lb after surgery (in five weeks!), I do feel better physically. And, I LOST a pound this week…so, maybe I am adjusting to the “new me” and can work hard to lose the weight I gained post-TT and stay feeling well.

I do have headaches that I never had prior – I think these may be temporary since they are not happening as often as they were a few weeks ago. I don’t think I am on the right level of Synthroid yet – my doc wants to lower it which makes me nervous about weight gain…although, from what I am reading, if I am on the “right” amount of meds based on my labs, this shouldn’t make me gain weight.

I would be concerned with the noduels – although maybe this is because I am still in shock that I had cancer on my thyroid which I don’t think would have been found without the TT.

I think I am going to have to work hard again to keep my weight on track – I’ll do the two workouts a day a few days a week, adding in more weight training will help too. I can’t do much about not having a thyroid, and I think keeping it would have been a mistake for me. I am much better about taking my Synthroid every day than I was with the Tapazole – don’t want to go hypo!

You could certainly talk to your endo about possibly trying meds for 6 months or more to see if it helps, but look into all of your options – don’t let the possible weight gain keep you from a TT…there are many people that had a TT and they don’t go back to the forums to post after because they are doing well…
Talley

[JCC]

#1180553

Thanks for the responses & support. I’ve been reading all the “post TT” stories on here and they are very helpful. I love the Glad Press & Seal trick for showers; I’m going to get some of that this weekend. My new thought is if I feel better after the TT, the “battle of the bluge” should be easier.

Questions you all had:
Karen –
How did they actually diagnose your Graves’ back in 2005? Good question, I did have an uptake scan at the time, and I’m pretty sure they did an antibody test but I cannot locate my blood work results in my file; I’ve requested another copy from my PCP. Not that it really matters at this point but I’d like my file to be complete
All of us had doubts, second guesses, third guesses as to whether it was the right decision. You will have the same conversations over and over with yourself. I found the best thing to do was write down everything, keep a journal…This is what I was going through, I’m wrapping my head around it now and I know it is the best option. I’ll probably continue to second guess myself until I feel better.
Sue –
I would suggest that you focus your time and energy on consulting with surgeons to find one that you feel very comfortable with. I believe one of the biggest factors (possibly the biggest) in how successful the surgery and recovery is lies in the hands of the surgeon. The minute my Surgeon asked me to tell him, in my own words why I was there and to start at the beginning…I knew he was the guy. He’s a “head & neck” surgeon with a specialty in Oncology and the fact that I’ve heard “even though the biopsies came back benign, we are going to wait for the final pathology report” scares the crap out of me but I am confident that he’s already seen whatever he’s going to run into. AND I’m confident that there’s NO CANCER, because I feel like I’d know if there was:)
Talley –
I would be I would be concerned with the noduels – although maybe this is because I am still in shock that I had cancer on my thyroid which I don’t think would have been found without the TT. The nodules, especially the “suspicious” ones are my main concern. If they were not present I probably would not be having the TT on 8/13/13 (glad that’s a Tuesday & not a Friday), I would be exhausting all other alternatives first. Did they biopsy your nodules before your TT? What were the results of those biopsies?

I’ll keep you posted on how the TT goes next week.
Thanks – Jena

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