[sarawebberdurnell]

in reply to: About 14 months post TT and still working on meds #1183735

Thanks. I realize that some of this isn’t related, but I haven’t ever been this sick. It has just been a bad year of illness and I wondered if it had anything to do with what I have going on, or if it is just “a bad year”. Not implying that it has to be the Graves or lack of thyroid. I was just curious.

Sara

[sarawebberdurnell]

in reply to: Total Thyroidectomy, still Hyper? #1183710

I had a TT about 14 months ago and I am still adjusting my levothyroxine. I have jumped from hypo to hyper symptoms several times. For the first time since I was diagnosed with Graves and Hashimotos, my T3 is low, so I have started taking liothyronine. It is frustrating, but I wouldn’t trade having my thyroid back. Getting the “sweet spot” for meds after surgery can take some time.

Sara

[sarawebberdurnell]

in reply to: I lower my Levo and my TSH drops even MORE! #1183003

Please take comfort in my discomfort It is good to know we aren’t alone or crazy. I wouldn’t change my decision of the TT and I did know finding the right dose could be tricky. I haven’t been battling it as long as you, but I do know how extremely frustrating it can be. It would be nice to have a day without symptoms from one side or the other, and hopefully that day will come sooner rather than later. It amazes me that such a little part of our body can make such a MAJOR difference in how everything else functions. One day we can look back at this and have the peace of mind knowing that it was a great decision and we can bounce back from all the craziness of it.

Stay tough and take it easy on yourself. I get really hard on myself and push, when I should be reminding myself that this is the right path and I just need to be patient, that it will all work out. Though it is hard when I don’t feel quite right.

Sara

[sarawebberdurnell]

in reply to: Trying to find the sweet spot after TT #1183057

Thanks Kimberly. I believe that is what my endo is trying to tell me. I thought I may have heard that before, but I couldn’t recall. My body is really strange about medications, so I guess this shouldn’t be a surprise

Sara

[sarawebberdurnell]

in reply to: Trying to find the sweet spot after TT #1183056

Thanks Sue It is hard to make changes since some of us apparently bounce back and forth quite a bit. The “waiting period” between dose changes and when it finally hits your body is awful. Thanks for the advice and I’ll mention it to my endo when I see her again. She is really good about listening to me and my symptoms and she does believe that I can “feel” the differences much sooner.

Hang in there too and keep us posted. I hope you can find the right dose soon too, being back to “normal” would be nice

Sara

[sarawebberdurnell]

in reply to: I lower my Levo and my TSH drops even MORE! #1182999

I don’t have any answers, just to say I hope you can get it figured out and on the right dose. It’s nice to know that others are battling the same dosing issues though. After my TT on 4/2014, I have been bouncing back and forth between hypo and hyper the past few months. I certainly don’t regret the TT, as my symptoms don’t even compare to before surgery, but it’s very frustrating to have the joint pain and lack of energy, then bounce to rapid pulse, high blood pressure, and face breakouts, then back again even adding headaches this time. I don’t understand how the numbers game works on the labs. In June T4 was 1.18, TSH was 3.76 and I was hypo. In Aug, T4 1.53 and TSH 1.51 and I was hyper. Four weeks later, being more symptomatic T4 1.28 and TSH 2.39, which both apparently are in the normal range. I wish I had a better understanding of what means what.

I know your post was a week or so ago, so I hope you have gotten some answers. Hang in there…the light comes eventually

Sara

[sarawebberdurnell]

in reply to: swingin from hyper to hypo! #1182933

HI I bounce back and forth frequently. I was diagnosed with Graves and Hashimoto’s about a year ago. My symptoms were from both ends of the spectrum and difficult to handle. RAI wasn’t an option for me, so I opted for a Total thyroidectomy, which happened in Feb. I feel tons better and my symptoms are a lot less drastic. I am still trying to find my “sweet spot” with the right dose of medication, but is easy to see if I’m running hypo or hyper. My blood pressure gets high and I break out like crazy (hoping the racing pulse doesn’t return too), when I’m hyper. When I’m hypo, I have joint pain and am super tired. Doing the research is the best option as it was hard to come to my decision of surgery. I am really glad I did it though and wouldn’t change it. Nothing is an easy answer when it comes to the thyroid. Best wishes.

Sara

[sarawebberdurnell]

in reply to: Time to recheck labs… #1182564

It is Shirley, thanks I do have a lab slip, so I can go anytime and have them drawn. With it being a holiday weekend, I may try to call on Tuesday and talk to the Nurse, who I actually know well (from before surgery), and see what she says. I’m sure you’re right and they assume I’m doing well, since I haven’t called them. With the symptoms being recent, it may be best to get a jump on it.

After all we have been through, I think we are pretty good at reading our bodies and can tell when something is just not right.

Thanks again. That’s what I needed to hear.

Sara

[sarawebberdurnell]

in reply to: Normal, finally! #1182457

Brbra,

I tend to eat while I’m watching tv…which happens most evenings I am trying to get better about not eating within 2 hours of going to bed, which is another downfall of mine.

We’ll get through it Sorry that your husband passed away a few years ago. Hang in there…glad you are feeling better…that’s important

Sara

[sarawebberdurnell]

in reply to: Pondering TT #1182402

I had a TT in Feb and if you are interested, I posted both pre and post op, so please check them out.

It is a personal decision and I was nervous to jump into a TT, especially since I had 2 hernias repaired in July and that is was threw my Graves into hyperdrive. Looking back, I wouldn’t trade my decision for anything. All of my symptoms were gone almost immediately. It was like someone flipped a switch. I am still struggling with a face rash/acne, and have started getting tired this past week, so I think I may be on the hypo side a bit. My weight loss isn’t going fantastically, but I’m not gaining any and I have the energy to work out, so I’m not really complaining (and losing 4 pounds in month is better than nothing).

I hope you can find the information you are looking for and are able to make an informed decision that will be right for you. Best wishes.

Sara

[sarawebberdurnell]

in reply to: Well, here goes! #1173701

I’m right there with you I haven’t felt better and I have absolutely no regrets about my TT. I see my endo in a month and I’m glad because I am feeling a little hypo, not bad, but enough that I am wondering about my bloodwork. I haven’t had my levels checked since 6 weeks post op and they looked good. I have been on 100 mcg of Levo since surgery, which was in Feb.

I feel so good that I have been working out at the gym 3 times a week for an hour each time, but have only dropped 4 pounds in the last month. I’m not complaining though, I’d rather be losing it then gaining it. I’m just excited to have my energy back with no joint/muscle pain. And I agree…no more massive sweats for me, even my deodorant is working again

It is so encouraging to hear that you are doing so well also.

Sara

Btw…my hospital bill was $38,000 minus the doctors charges. I would pay that myself too. It was worth every penny.

[sarawebberdurnell]

in reply to: Meds interfering with Levothyroxine #1182416

What a huge bummer I am glad that you figured it out though and hopefully can get back on track. I’m always slightly disheartened by the 6 week wait while the meds start to work. Hang in there

Sara

[sarawebberdurnell]

in reply to: was surgery a good choice? #1182395

Hi I was diagnosed with both Graves and Hashimoto’s diseases in October 2013. It is fairly rare to have both antibodies and I was having massive difficulties with drug treatment (couldn’t find the right dose that would work) and symptoms. I had both hypo and hyper symptoms. I was not a candidate for RAI treatment as my uptake level was so low, I would have required a dose of RAI that was much higher than my endo was comfortable with. She wanted me to keep trying the drug treatments, but I was feeling so awful, I couldn’t take it anymore. She referred me to an excellent surgeon, who explained everything to me and after reviewing my records and talking to me, recommended a TT asap. He said I could have waited, but knew I would feel tons better after surgery. Boy was he right!! Within a week almost all my symptoms had resolved and I was back to work within 2 weeks after surgery.

I have only had my blood checked 6 weeks post op and it was in the normal range. I see my endo again in a month and I’m fairly positive I am slightly hypo, but what I am dealing with doesn’t even compare to before surgery. I posted all my pre and post op stuff on this site, so feel free to browse through them if it helps at all.

Surgery was the best decision I have ever made. My surgeon told me that he found a goiter, which hadn’t shown up on previous tests. He also didn’t even mention a partial thyroidectomy. He checked my parathyroids when he was doing surgery and found them to be very healthy, so he left those, which is usually the case in TT, unless there are other issues, i.e. cancer or the such.

Please feel free to ask me anything if I can be of anymore help. Best wishes.

Sara

[sarawebberdurnell]

in reply to: Normal, finally! #1182454

I didn’t know I had a goiter until after my TT. The ultrasound didn’t show it a few months earlier and I’m not sure if it grew that fast or somehow got missed. I have also been struggling with losing the excess weight since surgery. I put on 25 pounds fast before surgery, but am now able to work out several times a week and have way more energy than before. I, also, am getting it off slowly. 4 pounds in a month, but I’m convinced it’s better than gaining it. I also think I may be a bit hypo, but am not seeing my endo for another month to check my levels again. My dose of 100 mcg of levo hasn’t been adjusted since surgery, so I am a little concerned since I am getting a bit more tired this week and the weight loss is super slow. I also haven’t been able to get rid of the “rash/acne” on my face completely even with topical prescription meds. But…that being said…I still feel TONS better than before surgery and wouldn’t change it for the world.

I am so glad the RAI worked so well for you and glad to hear you are feeling so much better

Sara

[sarawebberdurnell]

in reply to: Does a total thyroidectomy protect from eye problems? #1182479

I had a TT in February and have basically felt fantastic since then. I have enough energy to hit the gym 3 times a week at an hour each time, but the weight loss is taking time. I have only had my bloodwork checked 6 weeks after surgery, and my TSH was in the normal range. I’m due to redraw and see my endo Dr. in a few weeks. She did tell me that if I was having difficulty losing the weight to let her know and we’d draw my blood earlier to check my levels. I have been on a dose of 100mcg of Levo since surgery and not had it adjusted at all. I have also only lost 4 pounds, but it is better than gaining it like I was prior to surgery. I didn’t expect it to be easy, but it is coming off slowly. My guess is that I am slightly hypo and my Levo needs to be adjusted, but for now I am happy having the energy to at least try and do something about my excess weight. I know it is different for everyone, but I hope this helps some.

Sara

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