[ReneeE]

in reply to: One month till RAI – Hypo? #1062365

So apparently I am a big pain in the rear and like to over react. I got a message from the doctor today saying that my T3 and T4 levels are normal but my TSH is still abnormal (to be expected) and that the weight gain has nothing to do with my thyroid. ARE YOU KIDDING ME? 13 pounds in 4 weeks has nothing to do with my thyroid? Seven pounds of which are totally new compared to the pre-Graves-symptom days.

I haven’t actually seen the results yet, I will get a copy this week, but… Oh, and she told me to only take 5 mg of the methimazole once a day now (was at 10 mg/2xday, then 10mg/day) until my RAI in three weeks and then none after. Why change the dose then? Originally I was to take the MM after the RAI…

I am sooo frustrated. I feel like a fat cow, my skin has dried up and I am my usual cold self at work. And my joints are achey. I feel like hell but it has nothing to do with my thyroid? Sorry, I am super angry and upset here. It didn’t help that the message was relayed by the nurse who sounded very dismissive. Apparently I am now one of the crazy patients.

Do others find that when your blood work shows that you are in the normal range, you still can feel hypo? Have others found that when you are at the bottom of normal, you get hypo really quickly? I still have so little blood work to base my normal off of…

So if she is right and it isn’t my thyroid and I am eating WAYYY too much, should I try to lose the weight now or is it pointless? But I’ve lost weight before, I know how many calories I should be eating for me and I am not eating anywhere near as many calories as would be required to gain this much weight this quickly. I just don’t know what to do or think now except be depressed and pissed off.

Thanks for listening…

[ReneeE]

in reply to: One month till RAI – Hypo? #1062364

Thank you, Kimberly. I never know whether I am being overly sensitive or not, or just a pain in the rear, with the doctors or nurses, and me asking so many questions of them.

I called the nurse right after I read your message – I just needed that one litle boost of someone saying that I wasn’t being unreasonable, so thank you – and they agreed to send me for more lab work. We’ll see what it says…I just know how uncomfortable I’ve begun to feel in my own skin again, in addition to the weight…and I do have the super dry and itchy skin; as for my pulse, I don’t know what mine is normally; and I have become pretty intolerant to cold now too. In fact, today is the first time I have turned on my little under-desk heater here at work since last summer when the AC was blowing! Yet the thermostat on the wall says that it is in my normal comfort zone. And I am fatigued but I am blaming it on the 60+ hour week I pulled for work last week – eek! ” title=”Sad” /> So…and since I don’t have many sets of lab work to go on yet, I am just gauging things on how I am feeling…

Thanks again! You’ve been very helpful.

[ReneeE]

in reply to: RAI or not? #1062527

Thank you to all of you for your responses.

I had my appt today with my endo. I questioned her about why we hadn’t talked about all three options. She said the surgery just isn’t done anymore and despite her being fairly young and fresh out of school, I would have thought that she would have known that it is done quite frequently. Maybe it just isn’t done so much here where we live. I don’t know. I wasn’t sure what to say to her about that.

As for the drugs she said that the majority of people end up becoming hyper again, which I understand, and that it is much easier to control the thyroid meds from a hypo standpoint.

And she kept saying her (apparently) favorite phrase, "RAI is a definitive treatment".

So although I don’t feel like we really had a discussion about the options, I am still leaning toward the RAI. My T3/T4 levels were in ‘normal’ range and my BP was in my ‘normal’ range due to the metoprolol. Free T3: 3.1 (2.2-4.0), F4: 0.9 (0.8-1.5), TSH: <0.007 (.358-.374). I understand that it takes a while for the TSH to stabilize…

I had anticipated that my levels were in range after these six weeks as I have gained back the weight I had lost, only a few pounds, and I am sleeping better. The tremors are being controlled by the beta blocker and the itching on my legs has toned down. The only symptoms that haven’t gone away are the tummy/bowel troubles and the heat intolerance with sudden hot-flashes (I’m only 35!), to which my doctor said today shouldn’t be cause by my thyroid anymore. What??? She said it must be something else. Well, I kind of doubt that…And no, I had never had this issue before the assumed onset of the GD. Anyone else continue to have hot flashes?

She did reduce my methimazole and the b-blocker to half what I was on before. So now just 10mg/day of the methimazole and a beta blocker every other day for a week and then I am to go off of it.

So, I let the doctor go ahead and schedule the RAI. It is set for March 30. I figured I could take it that afternoon and then only miss two days of work and then have the weekend to get rid of the excess. The girl that sits next to me at work is trying to get pregnant and had a miscarriage recently so I don’t want to cause her any distress by sitting near her after the treatment. I should be able to work from home so at least I won’t have to truly take off vacation days, just be at home.

We only had a couple day window in which to schedule or else we’d need to wait until after April 16th as we’re taking a vacation April 9-16 and getting on a plane, which I understand can be a little problematic. But in theory the trip should be fine with the letter from the radiologist, right?

Then I came home and was discussing it further with my husband, always knowing that I can reschedule if needed. He hates to fly and there is a lot of anxiety for him to get on a plane and make it through the flight. He would prefer to not have any potential for security issues (and me getting upset) due to the radioactivity, even with the letter, as this will just heighten his anxiety on the trip. We also talked about whether it is smart to go on a vacation so soon after the RAI in case anything were to happen. I wouldn’t be near my doctors or records (which I could easily take with) and there is a possibility for making our vacation less enjoyable than it could be since we’d be within the 2 week ‘dumping’ time period. What do you think? Would you wait until after the vacation to do the RAI?

I also called my eye doctor and left a message about the recent GD diagnosis. My endo looked at my eyes and said they looked fine and I don’t think I am having any dryness but I figured it would be a good idea to let him know. My annual eye exam isn’t until July. I just want him to look at my chart and make sure he has no concerns before I move forward with the RAI. I should hear back from him later this week. They might try and see if insurance would let us move my annual exam up a bit so that I can come in now rather than later.

So, now I am thinking about waiting to do the RAI until after the vacation. Do you think that is a smart move?

[ReneeE]

in reply to: 2 weeks post RAI and still itching #1062505

Pattimeg –
I am also recently diagnosed and so far have just been on the anti-thyroid meds for six weeks. I have had unbearable itching on my lower legs but also general itching everywhere since last fall when it seems my symptoms began. After the diagnosis it all started to make more sense. The general overall itching has passed now that my levels are coming down but I was (and still now) using almond oil, rubbed into my wet skin, before I step out of the shower. (If you go to a health food store, in the massage section, you’ll find a variety of body oils to use. I switch mine up and use what’s on sale. I like Home Health brand a lot, now I am using NOW brand). I also use a lotion that is heavy in natural oils, like safflower or sunflower or shea butter to add some moisture. All over, twice a day, and especially before bed as that was when I would start itching and couldn’t stop! Drove my husband a little batty! Oh, and warn others who use your shower that the floor could be slippery due to the oil.
My endo and now my dermatologist have both looked at my lower legs as they are still itchy. And when I scratch them, they bleed very easily. My endo didn’t say anything about them, just looked. But my dermatologist this week was concerned that I could get a secondary infection from the scratching. She prescribed me some medications to use directly on the scabs/wounds I am causing. After two days the creams seem to be helping some. But she also recommended an over the counter lotion for eczema and itchy skin called Sarna to use to try and avoid any more need for aggressive scratching. I had to ask at the local Walgreen’s where to find it as it wasn’t with the other regular lotions. It was near the anti-itch creams instead. It is pricey but you aren’t supposed to use it all over your body or for an extended period of time. You might look for it, it might help you out for now.
Hope this helps a little!

[ReneeE]

in reply to: RAI or not? #1062523

Thank you Bobbi for your response. I think the fear factor of the RAI is what has got me going right now. And reading about the troubles that other people are having with all types of treatments…so thank you for pointing out that most of the posts on here are illness related and not many about how things are going after successful treatment.

But it feels like the ATD is working as I have been sleeping better. Apparently I was having night sweats and didn’t realize it. I have also gained back the 6 pounds I lost. I had been eating everything in sight! And I am getting my strength back, even so that I was able to ski two days a week ago. Looking back, and reading about the GD, I realized that I have had a lot of the symptoms but that they were ones that were easily blown off or attributed to something else. My blood pressure had been higher, for me, as I am on the low end usually. So much so that nurses will often ask me if I am feeling okay when they are done. But since it was in the ‘normal’ range, I was fine. I had an intolerance to heat and my internal ‘thermostat’ as I like to call it, was running very hot. Getting ready in the morning was causing me to sweat and make me feel like I wanted to throw up because it was so hot. I wasn’t as cold all winter when I would lie down in bed nor at work when the other girls were all cold, I wasn’t cold like I usually am. I’ve been having these funny little instances where my stomach would feel ‘sour’ – that’s the only way I know how to describe it. Not nauseous, but sour. I had no strength in my legs, so much so that it was hard and painful for me to make it up the whole flight of stairs at work. And of course, the tremors. And general anxiety. Bowel troubles, mainly foul smelling gas that usually only occurred in the late day and only when I am moving around. Itching, mainly from my thyroid area (doh!) down to my belly button. No rash, just itchy. Then my shins and calves got really itchy and they bleed really easily when scratched. Then that cleared up and I got an eczema-like scaly rash on my tush. Then that cleared up and now we’re back to the itchy lower legs and the tush rash is coming back. The endo looked at my legs six weeks ago but didn’t say anything about it. I am not sure if it it the rash that goes along with GD or not… I do not appear to have TED.

So, like I said, I feel like the ATDs are working, just how much, we’ll see on Monday. I just don’t know if RAI is the answer if the ATD’s are working. But the side effects of the methimazole make me nervous too, taking it long term. And the potential for relapse. So…I don’t even know anymore…I hope to feel more settled on Monday after my appt when I know better where I stand. I just feel rather pushed into the decision, that RAI is the only option, according to my endo. She used the words definitive treatment. I think I have seen statistics stating that RAI has about 90% success rate and the ATD’s only like 40% after a certain number of years…anyone have any other stats?

Thoughts and stories are welcomed…
Thanks
Renee

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