[Ski]

#1067425

It’s always best to have yourself checked, or at least talk with an advice nurse on the phone, if you’re concerned. If you can speak with someone from your doctor’s office, they may be able to ease these symptoms just by having you take a little bit of a beta blocker (don’t do this without speaking with a professional, though).

[enough3]

#1067426

Like Ski said, talk to a health professional.

In the meantime, one thing that may help….I don’t know. Worth the mention.

My Radiologist told me to drink lots of fluids with RAI. Said that it helps in two ways 1)gets rid of the radioactive stuff 2) helps flush out hormones
Also, staying hydrated helps your heart.

Hope this helps?? Hang in there….the rate of a thyroid storm a month after RAI is very slim:)

[hockey]

#1018841

Hello all,

I think I’m going through the thyroid dump – had 17mci on Oct 2nd. My last blood test post RAI was on the 28th of Oct, T2 was 12.0, T4 was 29 (I think), I’m due for another test this week.

I’ve felt crappy – headaches, tired, some chest tightness – all week … today, I was very close to going to the hospital to see if I was in thyroid storm >> my chest was tight, heart rate was 145bpm (prior to RAI, it was usually around 100bpm), I’ve been short of breath on any type of activity for most of the week. Today too I had tremors in my arms rather than my legs only. I was exhausted too, I just didn’t have a fever, so I didn’t go – hopefully my not going won’t end up being a mistake. I know that skipping my hockey game this morning was the right call to make.

The chest tightness seems to be better – hr is still up, more like 100-120 bpm. and I still have a bit of headache and don’t feel energetic.

I do have a Dr’s appt (with my GP) for a physical on Monday – was scheduled prior to doing RAI, but it looks as though the timing may be good – having an appt. booked too for a few days away too is likely part of the reason why I didn’t go to the hospital today. Any suggestions as to what to report to my dr? Or, perhaps, how to say it to him so that he understands how I am feeling? I’m a bit worried that he will pass the buck to my endo as this is a thyroid related matter – but guess I shouldn’t jump to conculusions before I’ve even had the appointment.

For those who have been through a dump (or even TS), how long did it last? Did anyone have similar symptoms?

Are there any additional symptoms I should take into consideration in deciding if I need to go to the hospital re: TS? Ones that shouldn’t be overlooked even if I have an appt. for end of day Monday?
– what if you don’t have a fever?
– how high should your HR be? (the book I have says up to 200bpm, but what is a more realistic bottom number or range)?

Thanks!!

[hockey]

#1067427

Well, I didn’t end up going to the hospital – the chest tightness seemed to go away late in the day on Saturday and wasn’t there on Sunday.

I mentioned all the symptoms to my GP at my physical and he wasn’t sure if it was thyroid related or not – good to keep an open mind – he said if I still feel crummy that I should deal with endo. He ordered add’l blood tests, and an EKG to make sure all was ok. Hopefully it will all be ok as otherwise, he gave me a clean bill of health – yippee! (even though my bp seemed high at 134/79) – guess he was taking hyper into account. He also said he hasn’t dealt with a patient who has had RAI done in a long time (10 yrs at least) – so that’s not exactly in my favour, but at least he was up front.

My endo’s office called with the results of their blood test I had done yesterday as well – T3 13.1 & T4 32.0 – so … numbers are still going UP!! How long does this last? I was hoping that I had hit rock bottom on the weekend, and that they would have been the same, or lower than the blood test I had on the 28th of Oct. I didn’t get a chance to ask the endo’s office any questions – she put me on hold for 5 mins after calling, then I felt rushed off the phone – she never asked about how I was feeling or anything … if I try to call back with questions, I will either get a busy signal, or, a message saying the office is closed – with no voice mail option. She said to get another test in 2 weeks, although this time, I will get another test sooner if the chest pains start again in case the #s are going up rapidly. It’s funny that when my T4 was 49 (yes, that’s right!!), when I was initially diagnosed, I didn’t feel this awful – and that may be a downfall as I wasn’t complaining then, so dear old endo may think that these numbers, which are less, shouldn’t pose a problem.

Yes Ski you are probably right – better to get checked out that not. I was second guessing myself all weekend, so yesterday’s appt. was a relief. Not sure why, but I really need to be pushed to go to the dr’s. Even when I was in labour, I wasn’t really sure (for child #1) and my husband thought it was just false labour as all his friend’s wives had it – and I had an appt. for later that morning wth my OB so I didn’t really worry. So, I sent my husband off to work (1 hr drive) for a 12 hr day … needless to say that all he got in was 1hr of work, and a couple of hours in the car. Anyhow – I really need a push to get me to go.

As for a TS happening 1 mth post RAI – I don’t think I would be so quick to say that it wouldn’t happen … TS’s are rare to start with, but one of the triggers is having RAI, and uncontrolled Graves >> which I’ve had both, plus I know that my T3/T4 #s are rising, so TS was the first thing that came to mind.

So – if anyone has any suggestions as to how long T3/T4 #s continue to rise during dumping, that would be helpful. Am I at the peak yet, or will they continue to rise even more? I’m hoping that I start to feel better soon. I’m not sure what is better – suffering mental symptoms (pre-RAI) or physical symptoms (post-RAI) as the symptoms I feel seem to have switched following RAI.

Thanks for listening.

[ewmb]

#1067428

Hockey,
My numbers were going down down down until my TSH was almost undetectable for about 3.5 months after my RAI. I am guessing that my other numbers were going up but my GP didn’t always do them.Then suddenly my next test was TSH of 19.5 and that’s when I called the endo and then 62! and now down to 33 this last time. I have been on levoxyl for about 2 and half months now. I did notice real changes to the way I felt which is why I went and got tested again when I found out I had gone hypo. I wasn’t scheduled for a test again for another 3-4 weeks. I’m glad that I didn’t wait. Do pay attention to your symptoms and when things change too much for you to be comfortable go get another blood test. You don’t know until you know whether the RAI really worked.

I had a great amount of chest pain when I was first sick with Graves and the cardiologist I ended up seeing after going to the ER one weekend with what I thought was surely my heart dying was the one who asked me if I had had my thyroid tested.

Hope that you feel better and better each day but I know that it’s a struggle. I am still in the fight but can tell that I am getting much better now.

ewmb

[enough3]

#1067429

Hey Everyone,

I had my 15mir dose of RAI on Friday morning. I found out today my uptake was 50%.

I do not have to have labs done until I "have that hypo feeling". (In my case that works great b/c it is usually before the doc wants me to come in)

Okay….today I have felt a little out of breath. I can feel my pulse in my thyroid…really starting feeling it tonight. I feel like I could run 20 miles….except it would make my heart come out of my chest..lol

Could I be dumping this early??

I’m not too worrried about a thyroid storm becasue my labs were all in normal range last week:) AND my resting heartrate is fine. Just wondering if this could be a "dumping" feeling? On another weird note….I’m extremly tired. As much energy as I have…I still feel like I could go to sleep right away. Totally weird to have these combinations of symptoms. Fimilar??

[Ski]

#1067430

I’m really not sure whether the "dumping" can occur that quickly, but everyone’s different. It’s also possible that your body is only now reacting to the lack of ATDs. That energetic/tired feeling was pretty common for me when I was hyperthyroid ~ it happens because your body is revving high, but it’s exhausting to be in that state.

As always, if you feel like things are going wildly out of control, go to the doctor….

[hockey]

#1067431

Not sure if I made it clear in the last post when I said my numbers are moving up! It’s not TSH that’s moving up, it’s still suppressed. My T3/T4 #s are actually more hyper follwing RAI.

blood test day 11 post RAI – T3 – 7.6, T4 – 23.5
blood test day 26 post RAI – T3 – 12.0, T4 – 29.8
blood test day 38 post RAI – T3 – 13.1, T4 – 32.0

I’ve felt horrible from days 26-38, any suggestions as to whether this is ‘rock bottom’ or will my numbers (t3/t4) just keep going up?

[Ski]

#1067432

This is not common, so we really can’t give a conclusive answer as to what will happen for you. The possibility exists that you did not get enough RAI to destroy your thyroid, so the antibodies are doing what they do, and your remaining thyroid tissue is being stimulated. In any event, it’s not unheard of to take ATDs following RAI if your T3/T4 levels stay in the hyperthyroid range ~ you may not need to take it for long, but it’s far better than remaining hyperthyroid.

[hockey]

#1067433

Rats, I was hoping someone else had the same thing happen to them.

I was guessing my dose would be high enough (17mci) – higher than what most others have posted about, with an uptake of 50%. Could it be possible that I flushed the RAI out with drinking too much water (10L in 3 days!)?

Hopefully it is just the dumping, and it’s not getting worse. I don’t really want to have to take another dose of RAI … it was not a fun isolation period, and I’m not sure where I would go this time … I certainly wouldn’t go back to my dad’s cottage – I’m not even looking forward to going there in the summer for pleasure.

Guess I’ll just have to wait for the next test – in 2 wks – to see where the numbers sit. Guess I’m just frustrated after having a brutal weekend thinking I was in TS, and then to not have my endo even ask when they called with the numbers if I was feeling ok bothers me a bit.

As for taking ATDs – it’s not an option .. I am allergic to PTU & my endo doesn’t want to put me on the other one as he’s seen too many adverse reactions to the drug and also b/c I had the negative reaction to PTU. Guess I will just have to wether the storm on my own – no meds (incl. beta blockers that everyone on this board tends to refer to … my GP didn’t seem to think I needed them when I was in his office earlier this week, so guess it’s ok??).

Thanks again for your help Ski – I appreciate your words of wisdom.

[Ski]

#1067434

Beta blockers can just make you feel better, keep your heart rate down, keep the tremors at bay, and protect the heart from arrhythmias, but asthma patients shouldn’t take them. If you’re feeling horrid, you may want to press your doctor a little harder on taking those ~ you don’t need much in order to keep the symptoms at bay.

As far as methimazole (the "other" ATD), it’s not always a given that a patient will react to both, so again, just because your doctor has seen adverse reactions does not mean you must avoid that. If you’re interested, make sure you get authorization to have your blood tested often for the potentially dangerous (but VERY rare) side effects, and start with a low dose so you can minimize any trouble. Stopping the drug will reverse any of the potentially dangerous side effects.

This is a tough one ~ remember though, if you don’t want to do RAI again but are put in the position of having to do something, surgery is a valid option. As long as you find a good surgeon who does these procedures frequently with low complication rates, it can be almost a routine procedure.

I’m sure it’s scary to see your levels getting so high again, I really hope your next doctor’s appointment shows them on the decline!!

Please do keep us updated, you may be a great deal of help to the next person we see!

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