[Kimberly]

#1062776

Hello and welcome to the boards! You mentioned that you feel well until your cytomel “wears off.” One doc at our most recent conference recommended that patients who add T3 to their regimen split the dose up over the course of the day. He stated that otherwise, you end up with a big “dump” of hormone that wears off quickly. Another doctor disagreed and said that it was fine that the dose be taken all at once. It’s at least worth talking to your doctor about splitting up your dose, since it seems that you aren’t feeling 100% yet.

[Batorian]

#1062777

Thanks Kimberly,
That’s one of the things I hope to discuss with my new doctor. Splitting the dose makes sense to me since if I understand it correctly it lasts for 6-8 hours. Thanks for taking the time to reply!

[Batorian]

#1062778

Pt. 2

My endocrinologist sent me back to my primary care doctor and since then we’ve been messing around with doses. highest right after surgery was 150mg. Then 125 and now for the past year its been 112. In August I went to my PC because I felt very hypo even with the meds. I read about cytomel and asked to be put on that. Doc. prescribed 25mg once a day. and it gives me a bit of a boost– I can really tell when it wears out during the day. I still have hypo symptoms like mild hair loss, tired, depressed feeling, very cold, having trouble losing weight. I just don’t feel better! Here’s where I’m having issues. So I know this little gland controls a lot of things from head to toe– About 4-5 months after my surgery I started having specific issues that I haven’t found anything really about. ***TMI Warning Below***

One problem is more of an inconvenience, and one that I can live with. I’m a social drinker and I’ve found alcohol doesn’t affect me the same way anymore. before 2 drinks and I would be wasted. Now, it either makes me more sober (if that makes sense) or I just get sick. I’ve tried pretty much everything; I’ve tried it on a near empty stomach, everything… nothing "works" but I still get hungover the next day! Not worth it if you ask me! *laugh*I know thyroid is related to metabolism and obviously its not working for me. Its odd; But what’s worse and having a greater impact on my life is a new problem I have climaxing. again this started about 4-5 months after surgery. Since my surgery I’ve had 11 orgasms. Which is rare for me, before I had no trouble with this… now I get just there but then it goes away. Its very hard for me to deal with, and its negatively affecting my relationship. Drive and desire are there just can’t climax. Talk about tense! I even broke down and talked to my doctor about these issues in august. she had no real ideas and ran a bunch of tests; all came back "normal" but I can tell you this isn’t normal. I’m at a loss. Right now I regret having the surgery. Maybe 15 pills a day is better than 2. Not so much the drinking, but the sexual dysfunction. I read about low libido being a possible hypo side effect but this is a whole different problem!

I now have new insurance and am starting the long process of getting in with a new endocrinologist. But that of course is I’m sure months away. Feeling very overwhelmed and frustrated. Anyone ever come across these kinds of symptoms post TT or am I just "lucky"?

[Batorian]

#1018118

Where to start?

Pt. 1

The short version: Currently 31 years old. Have GD–undiagnosed for a year+ diagnosed/treated for a year and then had a TT a year and a half ago. Meds haven’t changed much; Started out on 150 Synthroid… then dosed to 125, and now 112 where its stayed. I still don’t feel "well/normal" with hypo symptoms talked dr into cytomel- prescribed 25mg once a day. Good until I feel it wear off. Still don’t feel well and having issues which I haven’t found anyone else to be openly dealing with.

The Long version. I’ve had to piece things back together– I guess a year or two before I was diagnosed I started having severe pain in my left eye. I couldn’t do the simplest things like wash my face without intense pain. But it would come and go–never enough to get me into a doctor. I was tired; but I was working a lot and felt like I was "just getting older". I was anxious and nervous but I was going through a very emotional/stressful time in my life…so I just thought it was stress. I wasn’t sleeping well; but that wasn’t new to me– I’ve never really slept well. I came home from work– and would crash on the sofa; there was nothing I could do to keep from falling asleep; that I blamed on my long hours; lack of sleep and stress. I started to worry when I would go upstairs to go to bed and just going one flight of stairs would send my heart racing like I ran a marathon; one night I thought this has to be what a heart attack feels like. Massive hair loss, moody, quick to anger, hand tremors, difficultly breathing and swallowing etc I didn’t even lose weight– I must be the only person to gain weight with GD because I just kept eating because I was so hungry!! *laugh* … I had the near total checklist of Hyper symptoms…. But I still wasn’t diagnosed. Interestingly my mom, and sister are both hyper– with Hashimotos. I was the opposite. I was worried my doctor wouldn’t listen to me; but she did– and didn’t question me. She ordered for a radioactive iodine uptake test– which along with blood work confirmed I was Hyper with GD.

Put on meds and referred to an endocrinologist. At the time my insurance only covered 2 doctors. I went to the first one who messed around with my meds, did ultrasounds and put me on a horrible low iodine diet for over a month. Every visit went the same. with no real signs of change in my symptoms, or his approach to my care. after 5 months I got tired of it and tried to get into the other doctor. They got my overview wrong and had me listed as hypo (I found this out afterwords on my first visit!) so they said for me to come in for my first appointment in something crazy like 4 months. but I was desperate so I did that. I remember that day so vividly. I got to my appointment early and then spent nearly 3 hours after my appointment time waiting in the waiting room. They were backed up and kept giving me really vague information about how long my wait would be– you can imagine between my moods, anxiety, high blood pressure/heart rate I was about to burst by the time they brought me back there– and then to be told they thought I was hypo!! yeah. Luckily the doctor and her approach to my care changed that. She took charge and we had aggressive treatment with meds (no diet!) to bring my levels to the high side of normal. and we discussed treatment options. by this point I was desperate to feel better. the thought of hypo didn’t scare me; just a different set of symptoms; and likely 1 pill compared to 15 a day. I did my research… the top things I was worried about were: 1. possible damage to vocal cord’s 2. the scar

Scheduled the surgery; it went fine. Did really well, sent home the next morning- had a day with low calcium issues. worst part was sneezing and trying to comfortably sleep sitting up! *laugh* I was surprised at how overnight how well I felt (aside from my neck and the incision!) So my fears: no voice damage, scar is healed well and I hardly think about it– if anyone asks "what happened to your neck?!" I say I had a sword swallowing accident! and they say "REALLY?!" "no, I just had surgery"

[Ski]

#1062779

I haven’t heard people specifically refer to a difference in how they react to alcohol, especially this long after surgery, so I just don’t know what to say about that. We typically notice the biggest changes when our levels are out of range. Thyroid hormone does affect the way we process things within our body, so I suppose there’s the potential for that to be different now, except that you’re having varying experiences, so that confuses things.

The other issue, as you may guess, doesn’t come up much ~ I’m sure it was a real leap for you to divulge. All I can say is that I don’t recall having seen much on this topic (and I’ve been here a LONG time, more than 10 years now). Again, this long after surgery, things really ought to be settling into some level of constancy, if not completely "normal," whatever that means, but everyone’s different. I kind of understand what you’re talking about, and I do recall some times when I felt similarly, but I never considered it having any particular connection to my thyroid hormone levels. If I were in a particular phase of treatment, I probably would have considered it, so it’s hard to say, but my completely uneducated GUESS is that they’re unrelated. If it continues being an issue, you should definitely go see a specialist. It can be connected to blockages in blood flow, so you’d want to make sure that’s not an issue. I think changes in blood pressure can also create the same effect, so again, you’d want to make sure all is well on that front, if your difficulties continue.

[Batorian]

#1062780

Thank you Ski for taking the time to reply to my post…

The Alcohol isn’t a big deal. It just kinda sucks. *laugh* the other issue seems to be causing more problems! I am wondering if its a adrenal glad or DHEA disorder. Guess I’ll find out in a couple of months as I am on a waiting list for a new endo~ so I guess I’ll see how that goes. Thanks again for sharing your thoughts!

[StacyQ]

#1062781

Batorian,

After I had the RAI treatment I TOTALLY lost my taste for beer. I don’t know why, but it happened. I changed my beverage of choice to vodka and lemonade or wine. It was probably a good year before I drank a beer and it didn’t make me sick. It was really weird.

As for the "other" problem, my suggestion is to maybe get an estrogen test done. In a nutshell, I had NO sex drive for a while and understand the frustration. I was diagnosed with premature ovarian failure which was a huge part of the problem. I posted a thread on my problem under Graves and the ovaries if you’re interested ” title=”Wink” />

Take care and welcome to the board!
~Stacy

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