[Leahrae]

#1058738

Hello everyone,

General question for everyone: How long after RAI treatment were you really HYPER for?

And how long did it take for you to become HYPO??

Thanks
Leah

[Bobbi]

#1169732

Hi, LEahrae:

I had my RAI right before Thanksgiving one year, and five weeks later was slightly hypothyroid, and started replacement hormone. I felt fine at that point. I was surprised to find that I was, in fact, hypo. And I was delighted to hear my endocrinologist tell me that this was the "worst" of it, over.

There can be successful RAIs, however, that take a bit longer in their effect.

[gatorgirly]

#1169733

Hi Leah,

I was really hyper for about two months after RAI. I had to go back on PTU about two weeks after, and never did stop taking the propranolol because my resting heart rate was 120+ after RAI if I forgot to take it.

It took me exactly six months after RAI to become hypo, and that was this past August. I was only hypo for a few weeks. I started at 100mcg Synthroid, then 88mcg, and now my doctor wants me to drop down to 75mcg (starting tomorrow) as I am still hyper. Apparently, my body is not cooperating.

[erinessary]

#1169734

Hi Leah,
I had a particularly LONG descent to hypothyroidism following RAI…it took almost a year for me. And then another 6 months to get my thyroid levels back up to a somewhat “normal” range. After 20 years of treating this disease my doctor said that I am his most difficult case so far. Good luck!

[gatorgirly]

#1169735

My endocrinologist also tells me that.Well, he hasn’t said “most difficult” yet, but he says I was his “most severe” at diagnosis and during ATD treatment (which failed). Isn’t it reassuring? Not…

I have a feeling “most difficult” will come up soon as I am again experiencing hyper symptoms 11 months post-RAI and yet we continue to drop my Synthroid dosage.

How are you feeling, Leah?

[azroses2322]

#1169736

I had RAI several years ago on 6/19, by 8/20 I got the first TSH level reading into the Hypo range (12), my doctor did not want to start the replacement yet. But 2 1/2 weeks later I was in ER with fairly severe Hypo symptoms and the replacement was started. The amount of the replacement was increased as needed over a long period of time, I was told with RAI, not all of the thryoid dies all at once.

[Leahrae]

#1169737

Thanks everyone for all the feed back! I really appreciate it! I had my RAI on 12/9/11 and got my first labs back today 1/16/12. My levels are still the same five weeks post RAI. How long should I wait to get my second labs done?

[Kimberly]

#1169738

Hello – The latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists recommends testing every 4-6 weeks after RAI. However, if you start to feel hypO symptoms coming on in between appointments, definitely call your doc’s office and see if you can get a new set of labs done more quickly.

Every patient is different, but common symptoms of hypo can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

[Healingcc]

#1169739

It is very interesting to see how everyone is so very different in their response to RAI.

I had a long history of hypothyroidism, (Hashimoto’s) prior to almost 3 years of a suppressed TSH and finally significant hyper symptoms resulting the the diagnosis of Grave’s Disease. I used to be a PA, and so when the complete turn around to hyper symptoms occurred, I knew something was very wrong.

I had RAI and was told it could take up to a year for my TSH to even show up to the party since my pituitary had been “suppressed for so long”. At 6 weeks after RAI I felt miserable, but I have felt that way so many times over the last few years and told to “suck it up” that I didn’t go in early for labs. At 6 weeks my FT4 was 0.1 and my TSH was 42. So much for taking a year to show up.

Long and short of it is, there is not a “normal” way we, as patients, respond to these treatments. It is all individual and you have to be aware of your body, and your symptoms and whether they change.

I found it very useful to chart things. I checked my resting Heart Rate (before you even get up to pee first thing in the am, have a clock next to your bed and count it). When I began to get hypo, this was the first change I noticed! Also, keep track of whether you are hot/cold, itch, etc. Are you getting constipated? Another sign to note.

I actually went back and graphed all my lab work over the course of the 3 years they couldn’t figure me out. My TSH went down when my FT3 and FT4 went DOWN. They are to go the opposite ways. When docs kept looking at individual lab reports they had one answer…. “TSH is going lower you are getting too much thyroid, lets lower your dose” When I took in my graph to the new Endo doc and asked him to please “explain this”….he couldn’t. We are all Different. Don’t feel badly if you don’t fit into THEIR mold.

Also, We think we will “remember” how we felt on Tuesday. As most who have been through all this realize more and more in hindsight, we CRS!! One day melds into the next and the mental fog makes it more difficult. If you write it down, and see a significant change, go into the doc early for lab work. If it stays the same, wait the amount of time the doc recommends.

Been there, as a patient and a professional. I preferred the professional role!! Most docs haven’t had these illnesses and cannot relate to how we feel. I keep making that point to my doc, hoping I can affect how he responds to the next patients. I smile and let him know I am making him better for the next “crazy
woman with crazy labs”.

Hang in there!

CC

[Leahrae]

#1169740

Thanks for the reply CC! Your story is very interesting. It really helps me to hear about other people experience’s. I guess I just have to look out for the signs of hypo. I am going to get my blood taken in two weeks. I can’t believe you had Hashimoto’s then became hyper. How do you feel now? How many times did you have to get RAI? I am not constipated yet. Will that be the first sign that I am hypo. What are the other signs? Are you on synthroid? Thanks, Leah

[Healingcc]

#1169741

Leah,

I have found in my researching that it isn’t “rare” to have both Hashimoto’s and then Grave’s. Yet I have had others, including doctors tell me it doesn’t happen. I believe it is what confused the issue for so long. I have looked back at my “old records”, some of them back almost 30 years. Though data is incomplete, and some tests had different names I am able to get some comparison out of them. I had a “low TSH” with low T4 levels more than once, had ups and downs in labs way back. When I asked an old endo doc 3 years ago to check antibodies, I was told “you have Hashi’s, we know you have antibodies, no need to do them again”. Would have been nice to know if I had the Grave’s antibodies back then, which we now suspect I did. In discussing all this with the new endo guy, he said my symptoms for the “week” would reflect which set of antibody was more present at the time, and that that could change over and over. That is why he suggested antithyroid drugs were not a good choice for me, said it would likely re-set my levels to lower, but that we would constantly be struggling over which antibodies were “winning”.

That said, after 6 week on generic levothyroxine, my labs were “normal” but I still felt anything but normal. Nice to read a post in here saying, that your body “begins to heal once your labs get to normal”. Weeks 6-9 I made steady improvement, I am in week 10 and have had a tough week. Sleeping 11-12 hours a night again, and feeling very drawn out. Have more labs in about 3 weeks. I know this is a roller coaster ride, and have to ride out the lows and listen to my body, so sleep it is. I am getting exercise again, and making myself do it, as I had lost a lot of muscle mass. I am a big walker, doing often 5-6 miles 5 days a week, but had had to quit due to elevated heart rate, intolerance to heat etc. I am back to 3.5-5 miles most days, but very tired when doing it. I do feel the strength coming back.

I would say the earliest sign for me was the Resting Heart Rate as I posted. Went from 80 down, down, when I was hypo, it was in the mid 50’s. Now is back to 65 and steady. Everyone’s resting heart rate though is DIFFERENT based on your over all physical condition. Mine had been low due to all the aerobic exercise I do, so can’t judge my numbers to yours, you have to do your own and look for a trend.

Also a decrease in the hot flushing, to being chilly was a sure sign. One week I am sleeping with the windows open in November, two weeks later I am bundling up in extra blankets.

For me, I am not certain I know what “normal” feels like. Years and years of lab work when not feeling well, with values that changed a lot just shows my body was really reeling. When I thought I was always “hypo” I thought if they would just give me more synthroid, or what ever, I’d feel better. I found that too much thyroid, as in the Graves, can make you feel just as bad, or worse, that too little.

So it must be balanced, for your body and what you feel. I still will work on that. I am only on 75 mcgs of levothyroxine. I believe my endo guy will work with me, but there are many more lab tests to do to establish MY new normals, and how I feel…so have to work with it.

What I do not understand is the role of the antibodies in respect to thyroid hormones taken by mouth. I am in Texas over the winter, as I have done for years. We have tons of Cedar allergies here, which affected me for the first time last year. RIGHT BEFORE the Graves started. Stimulates the immune system, and may be contributing to why I am not feeling as good again. Endo doc not up to date on that. I read an article last summer saying the number one cause of onset of Grave’s in Japan is felt to be Cedar allergy assault on the immune system. My doc is in Mn, where I spend the other part of my year. Unfamiliar with Cedar allergies up there.

Always so much to learn from each other.

I am going to do a new post for people in Tx to ask this question.

My best, keep the faith

CC

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