[enough3]

#1066720

Susan,

I went from 0.32 TSH to 11.30 in 8days. That is really hyper to really hypo in just 8 days. Now, that is just me. That may not happen to you. It may take more time for you to go hypo. Everyone is different. BUT, again, I would get your labs done every 7 days. It is worth it. What if you went hypo in a couple days…then you will have to wait 4 weeks to start your replacement. Yikes!

You do what you feel you need to do. Everyone is different on this site. I DID NOT want to go a long period of time being hypo. I choose to get my labs done every week. I’m glad I made that personal choice…as I would still be EXTREMELY hypo right now and probably reporting some weigh gain and puffiness.

Ski gave you some really good info. Be as proactive as you can. I went so far to make a chart of my tsh, T3, and T4 numbers over a 2 1/2 year period. This really helped me and I now understand where my levels need to be. AND I will further my knowledge as I find a replacement dose that works good for me. Becasue of my charts, I now know that when my tsh is around 1.0-1.2…I feel good and sleep well. That will give me a good starting base with my replacement

You can’t possibly feel good right now with your tsh in the range it is in….but I would encourage you to REALLY pay attention to how you feel the next 2 weeks. If you start to feel really really good for a couple days….then you may be making a turn toward the hypo road:) I felt SUPER for about 3-4 days….then I went hypo…that fast! Hypo wasn’t as bad as hyper for me…just the low pulse and blood pressure thing freaked me out.

[susandemarco]

#1066721

Hi,
I have a question that I am wondering if anyone can answer. I had my RAI treatment four weeks ago yesterday.
The nuclear dr. said I would start to feel a litlle hyper between the third and fourt week. I am still feeling
fine. My uptake was 71percent and I was given 10mlc. I am wondering if they gave me enough. I sure would
not want to have to take this again. When I went for my appointment with my endo last week, she referred to
my dose as "pretty large amount". I sure do hope it was enough. Has anyone out there had the same experience,
and if so, when did you start the process of going hyper before going hypo.
Thanks,
Susan

[enough3]

#1066722

Susan,

You are still early in this. Hang in there. Not much will happen in 4 weeks. I did not go hypo till 9 weeks. I went hyper around week number 5..so I was worried about the same thing..not getting enough.

10mci is a good dose. I had an 85% uptake and 15mci. You just need to give it more time. I hated the waiting, too:( Hang in there and keep you labs up every week after week 8:)

[susandemarco]

#1066723

Hi,
I called my doctor on Thursday, and asked about getting blood work done every week. I even mentioned
that if she did not want to have me do it in the office, I would go to the lab myself, but she had to
give me a prescription. I gave the message to the nurse, who in turn told the doctor, and the nurse got
back to me and said the doctor told her that there is not much difference from week to week.

I am sure I will feel much different when I start to go hypo, and as soon as I do she said I could go right in for
the lab work, and that I will not have to wait until my next appointment. I hope this works out.

Susan

[enough3]

#1066724

That would work, too. I disagree with your Endo about labs not changing much week to week. Although they probably will not change much between 4-8 weeks post RAI…beware of weeks 8-12….that is when a majority of people start seeing changes. At least you can go in and get the labs if you want. Just do what YOU feel like you need to do. The Endo and the Nurse are not going through what your going through. I got a little hot with my Endo’s nurse at the end….sometimes you have to be assertive. For me..the more knowledge I gained about this entire process the more I knew what I wanted done. Had I not listened to my instinct, I would still be hypo as I’m typing this with weeks to go before my Endo wanted my labs done.

I have had a WONDEFUL experience with this RAI process. Their were a few tough weeks..but I barely remember it now. I seriously credit my experience with getting my labs done every week between 7-9 post RAI. It totoally saved me from becoming extremly hypo.
My replacement has not given me any problems. I feel GREAT!!!! The most "normal" I have EVER felt in my life.

Stay PROACTIVE!!! ” title=”Wink” />

[susandemarco]

#1066725

Enough,
Thank you so much for all your information and advice. I certainly will stay proactive, and believe me , I am very
intuned to how I feel, and as soon as I start to feel hypo I will be at the doctor’s door.

Thanks again, and I will keep you informed of my progress.

Susan

[Bobbi]

#1066726

While it is good to be pro-active, susan, you also do not need to be afraid. The levels of hypothyroid that we typically get to are not severe, even if we wait the requested time our doctors suggest. One person’s experience here (mine) — one time, well into my replacement hormone regime, while I was still getting my levels checked every three months, and the dose adjusted, my lab tests showed up with a TSH of almost 13. And I felt just fine. I had no major symptoms of hypothyroid. Now, had I gone from hyper to a TSH of 13 in the first drop, I might have noticed a vast difference in how I felt, but I went from normal levels. Whether or not I would have felt awful, though, is not likely. I’m also pretty sure that if I had been feeling awful and gone in and had that TSH of 13, I would, now, be blaming that level of hypo for how I felt. But since I felt just fine –at a time when I was watching how I felt like a hawk — I have come to believe that we do not need to be afraid of minor levels of hypo.

In addition: How we "feel", subjectively, is not necessarily related to the precise level of TSH that we have. People who loved the way they felt hyperthyroid (and, yes, there are some folks like that) may have a more difficult adjustment to feeling well while normal. They might even report feeling awful while at the low end of "normal." I felt so terribly ill while hyperthyroid, that a minor level of hypo (which allowed me a full night’s sleep) was a welcome change. Regardless. I make this point because I think it is a trap for us to feel that the replacement hormone pill is supposed to make us "feel good." How we "feel" is a subjective thing that depends on a lot more complicated set of conditions than just the TSH alone. And feeling completely well cannot be simply achieved by taking a pill.

[enough3]

#1066727

Susan,

You will find everyone’s experience very different on this forum. Stick to how YOU are feeling when your levels start to change. Don’t let me or anyone else determine how you are supposed to feel or not validate how you feel at a certian level. Everyone is different. Take good care and I hope that you have a great experience.

[susandemarco]

#1066728

To Ski or Bobby,
Could it be that I am 5 weeks today post RAI and have not felt anything yet. I have not had that dumping feeling
that many of the people on this board talk about. And I still do not feel hypo. My last dr. appointment was two weeks
ago, and at that visit blood work was done and the dr. called to tell me everything was ok. My tsh was 0.11. As I mentioned
before I have no idea was that means. I was told by Ski, I believe, that I should get a paper copy of all my blood work to
see what the normal ranges are. I am not sure I will understand it anyway with all the zeros and decimal points.

At the time of taking the RAI the nuclear doctor said I would feel a little hyper about the third or fourth week, but
I did not.

Could it be that this treatment did not work? I do not feel sick, and at present I am not taking any medication.

Once again, I am very confused about all of this. I am due to go back to my dr. on March 12.

Any information you could give me will be appreciated. By the way my uptake was 71%, and my dose was 10mil.

Thanks,
Susan

[Ski]

#1066729

Hi Susan,

Don’t worry ~ it’s not at all uncommon to see very little change at this point, and not everyone does the "dumping" thing (I didn’t). Our body can take up to six weeks just to flush out all the excess thyroid hormone that was in our bloodstream on the day of the RAI, so it’s not likely that you would be feeling very hypo before that point anyway.

RAI isn’t a treatment that will make you feel sick ~ the fluctuations in thyroid hormone may make you feel a bit weird, but we’re all different that way too. For me, RAI was a lot of fuss and then… nothing big happened. ” title=”Very Happy” /> The doctor who gave me the RAI told me that it’d be at least six weeks before I felt any different, and it could be up to six months before we knew whether the treatment dose was successful or not. That’s because the bulk of the damage is done in six weeks, but the RAI can continue to affect your thyroid cells at some level for up to six months.

You may want to keep a symptom diary, that’s a helpful tool for the doctor to see whether you’re slipping toward hypo ~ I think we offer one as a bulletin, but overall it allows you keep solid records on your symptoms, their severity, and the frequency.

Once you’re looking at your test results, you’ll get an idea of what to be looking for ~ all test results show a "reference range" for normal, and then they give your result. That way you can see where your level stands against that reference range. In other words, if the lab’s reference range for normal TSH levels is from 0.5-4.0, and your TSH is 0.0000001, then your TSH is very low compared to the normal range. If your TSH is 150, then it’s very high compared to the normal range. That’s how you can see by your results where you fall, and what you should be thinking about in terms of correcting any imbalance. (By the way, TSH is the stimulating hormone, which operates inversely to your thyroid hormone, so if your TSH is low, your thyroid hormone levels are HIGH, and if your TSH is high, your thyroid hormone levels are low.)

I hope that helps!

[Waiting4Answers]

#1066730

Enough3, reading about your experience is very encouraging to me. I’m 5 weeks post-RAI (Susan and I had ours on the same day). I felt a few of my hyper symptoms returning about week 3 or so but they were minor compared to how they were before. What hit me this week is utter and TOTAL exhaustion… I’ve been working full time and taking classes at night but this past week I wasn’t even able to make it through my 8 hour workday without an hour nap at lunch (thankfully my manager is very understanding – but then I didn’t really give him a chance to be otherwise ). I’m wondering if I’ve turned toward hypo full force this quickly after RAI. I’m scheduled for bloodwork on Tuesday and have an appointment with my Endo on the 23rd. I’m REALLY REALLY hoping to start replacement soon because this exhaustion is a little more than I expected and it’s really exhausting to me. ” title=”Wink” />

Susan, I noticed you said your dose of RAI was 10mcl – mine was 29… I guess that may be why I feel so not normal but you don’t yet. Hang in there… WOW – I think I need a nap!

Kelly

PS – On a side note, my husband who has been wonderfully supportive 99.378% of the time during the last 6 months I’ve been dealing with this said something odd to me recently… "It’s not like you still have Graves’ Disease because you did away with your thyroid. You’re only hypothyroid now, right?" I really had no answer… my thinking was once diagnosed with GD, I’d always have GD. I’m hoping he was just having an off day, but if it comes up again, any ideas on how I can enlighten him?

[enough3]

#1066731

Sounds quite possible that you could be making that turning point. That is great your having labs done on Tuesday. I always made sure to get my T4 tested as well as my TSH and looked more at my T4 than my TSh. My T4 when I went hypo was 2.2-below the normal range. That was my green light for replacement.

If your labs do not turn out to show hypothyroidism, don’t be discouraged. I thought I was hypo around 6 weeks and I was not. So, don’t worry if your labs don’t reflect how you are feeling. (Altough I’m crossing my fingers for you that you are-so you can move on)

I glad my story encouraged you. Most people when they feel better and move on with replacement don’t post much on here. I figured I would stay around a little just to encourage people that it is not always a bad experience:)

Still feeling great today. No weight gain. Great heartrate. Sleeping solid. No hairloss, etc. ” title=”Wink” />

As for your other questions, I’m sure the facilitators on this site will have some really good answers.

[Kimberly]

#1066732

"Waiting4Answers":1fi5accl wrote:

PS – On a side note, my husband who has been wonderfully supportive 99.378% of the time during the last 6 months I’ve been dealing with this said something odd to me recently… "It’s not like you still have Graves’ Disease because you did away with your thyroid. You’re only hypothyroid now, right?" I really had no answer… my thinking was once diagnosed with GD, I’d always have GD. I’m hoping he was just having an off day, but if it comes up again, any ideas on how I can enlighten him?[/quote:1fi5accl]

Interesting question on whether or not you still have Graves — this actually caused quite a spirited discussion during one of the breakout sessions at our conference last year! Hopefully, someone who attended that session can add some insight. ” title=”Very Happy” />

One of the presenters did share a study that the Graves’ antibodies responsible for attacking the thyroid can still linger in our system…it’s just that they can’t cause hyperthyroidism if the thyroid is no longer active. Also, keep in mind that in Graves, the eye disease can run on its own schedule…sometimes starting before thyroid issues ever occur, or starting after we have been through treatment.

[Ski]

#1066733

Kimberly’s exactly right! Spirited session and all! ” title=”Very Happy” />

I actually was in that session ~ I think in the end (by the close of the conference), the answer was clear, but the words people used differed widely and some created "hot buttons," so I’ll try to explain completely without hitting any of those. ” title=”Wink” />

Here’s the thing with Graves’ Disease ~ we have created these antibodies inside our body. They attack our thyroid and cause us to become hyperthyroid. Once we are hyperthyroid, things start to "sproing" within us, if you get my meaning. Once we have destroyed our thyroid and it is replaced by thyroid hormone replacement pills (using regular blood tests to keep it stable), those antibodies can no longer affect our thyroid hormone levels. However, we still may have pieces within us that either take time to return to normal or may never return quite completely to normal since they went "sproing." We know some patients seem to continue having complaints about things like occasional brain fog, trouble remembering, things like that, but their thyroid hormone levels have been carefully managed and it does not appear to be related to that. Does that mean certain parts of us simply haven’t healed, or is it another part of us that can continue being affected by the antibodies? Don’t know that for an absolute certainty.

Here’s the other thing ~ Graves’ Disease comes also with the potential to have Thyroid Eye Disease and/or Pretibial Myxedema (I’ll use TED and PM from now on). It is not certain whether these are exactly the same antibodies, or just very similar antibodies, but once we have "finished off" our thyroid, it does nothing to predict whether we’ll end up with TED or PM, or how severe it will be if we do get those. They seem to be separate, yet very closely related to Graves’.

So ~ do you still have Graves’ after you have no thyroid? Kinda. You may have lingering issues that remain from the damage that was done while you were hyperthyroid, and that can be different for each one of us. The parts of us that are hit harder are usually parts of us that may have been weaker prior to us having Graves’ disease, and of course that’s very individual. It also can be a function of how LONG you were hyperthyroid, or how long your levels remained unstable, because naturally being hyperthyroid for five years would do more damage than being hyperthyroid for six months.

You will always be on the lookout for TED and PM (trust me, I know), even though neither is an absolute certainty for every Graves’ Disease patient, and either in its worst form is extremely rare. So that has a way of keeping the topic "on top" of your thoughts, if you will.

Your healing process will take a while too ~ at this point, you are still reeling from the initial hyperthyroid onslaught, and you need a LOT of TLC right now just to get one foot in front of the other. I hope you can help your husband understand. We have a unique issue because we can feel so awful, yet we don’t look so bad.

Does this help?

[Waiting4Answers]

#1066734

Kimberly and Ski, thanks so much for your responses. Now I have some reference material for our next discussion. I got the call today that my labs done yesterday confirmed I am now hypo and starting on levoxyl today. I’m really ready to be starting on the road back to "normal"!

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