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I’ve heard good things in general about Cleveland Clinic — and experienced a non-thyroid related treatment at one myself that was very positive. Anyway, your doctors most likely have told you to expect to be MORE hyper soon than you’ve been for a while but in case they have not, you need to be forewarned. As the RAI destroys thyroid cells, they release their stored supplies of thyroid hormone all at once, and when they do our hyper symptoms increase a lot. For a few days, typically. This is not "storm" because the cells that are releasing their supplies are not making new hormone. The half-life of the most potent form of hormone, T3, is three-quarters of one day, so when T3 is released (it is about 20% of a thyroid cell’s production of hormone) it gives a huge boost that goes away relaltively quickly. T4, which has to be converted into T3 to be a nuisance, has a half-life of almost one week. So, what you need to expect is an increase in your hyper symptoms, and that most likely will show an increase in the palpitations you experience. I had been prepared for this experience (we call it "dumping" here on the board) by my endo, but some folks aren’t and it can be frightening if you don’t know what is going on.
I do hope you are feeling much better, and soon.
After reading and reading and more reading about Graves Disease and the treatments for Graves Disease, I decided on RAI. Less than two months after being dianosed with Graves, I felt the need to do something quick. Although I did change doctors in the process because I just wasn’t comfortable with the my first doctor. I ended up at the Cleveland Clinic. What a difference, I am really satisfied with the doctors there. I took my RAI treatment two days ago because I just couldn’t battle the problems I was experiencing with ATD’s. Not to say the drugs were not working but the heart palpitations were just out of control. If I raised my arms above my head, I would have heart palps. My Cardiologist explained that my heart wasn’t the issue, it was my Thyroid. All the medications I was given was just overwhelming and I didn’t want long term damage to my heart or other organs. So for now I’m down to two drugs, 80mg of Inderal and 225mg of Rythmol. Two days after RAI, I was awaken by heart palps. I know my system is way out of wack as far as my hormones are concerned, but their has to light at the end of this tunnel. I’ve read that some others did not have palps after RAI and some still have them for a while. FRUSTRATING!!! I just want the heart palps to go away, I can deal with the other symptoms as they come. I’m wondering if my beta blocker is strong enough or should I ask my doctor to increase the dosage? Any insigts!
Thanks Bobbi for the quick reply. Actually they told me I would be experiencing more symptoms but I was not expecting them within three days of the treatment. So I was a little off guard. I guess I’d better buckle my seat belt! You say this phase my last about a week? I’m curious to know what to expect following this phase.
Hi SuperDave,
As many of the facilitators on this board will say, everyone’s journey will be slightly different. I was moved to respond to your post because so many of us have been where you are in the process and really empathize.
I had RAI on 2/25 of this year. As Bobbi indicated, my symptoms got worse before they got better. The heart palps were the worst. I did not start to feel "better" until about 7-8 weeks after treatment (better meaning heart palpitations were lessened, tremors gone, brain fog clearer, anxiety lessened, and able to get thru a conversation without balling like a baby).
It took about 2 months for my thryoid levels to get into normal range. And last week I became officially hypo and started on 75 mcg of Synthroid, to be tested again in 6 weeks. My eyes have been quite puffy but I had a full eye exam and the vision and muscles are fine. I use eye drops and warm compresses both of which really help.
You will start to feel better, it’s just that it will take more time then you’d like…and it happens gradually, you don’t just wake up one day and jump for joy. But I am back to going to the gym every day, riding my bike to work, going out to eat with friends, and able to enjoy the beautiful spring. In the throes of this disease, I thought I would never smile again.
Now that I am hypo I am a little bit more tired then usual so I am pacing myself.
So it will get better, but don’t panic about the worsening symptoms because , as Bobbi said, the thyroid is dying off and releasing all the stored hormone.
Take care of yourself, and looking forward to hearing that you too are feeling better!Apologies for double posting. Still learning the ropes here.
I am preparing for an RAI treatment (doc has had me stop my PTU for 7 days), but reading this thread has me thinking twice. I had no idea that there’s a chance of a hyper-surge after treatment. That’s GTK. I’m doing this to put an end to the up-and-down of going hyper then hypo then hyper. I’ve never been thrilled about the idea of killing an organ that GD aside, is working fine. But trying to control the hyper-stages is proving difficult for me.
My biggest apprehension about the treatment (aside from the radioactivity, of course) before reading this was having to rely on Synthroid for the rest of my life and facing a situation of it not always being available either due to production problems (which has occurred) or disasters (which we are having more of than I care to see.)
My questions coming to the board regarding the treatment specifically were more along the lines of should I board my cat while I’m radioactive. I hadn’t expected to see that you could actually end up being miserable for two months. Makes me rethink this.
Thank you PattiMeg! I’m going to do my best not to panic. You have provided very positive feedback for me. I was very active before GD took over. I lost 30lbs of muscle mass. Your encouraging words have given me something to look forward too. Back to the gym, golfing and coaching kids. Thank you so much!
As to the length of time one feels crumby following RAI — or any of the treatments. It is an individual journey. Five weeks after RAI I was feeling good. Not pre-disease normal, but much, much, much better. Other folks take longer. Moreover, it takes months AT normal levels of thyroid hormone (no matter how you get there) before your body heals enough from the damage that being hyperthyroid did, for us to "feel" normal again. It is a process, not an instantaneous thing. We see progress towards getting well, we don’t wake up, overnight, and feel like we did before we became ill. But we do get well again. And the better we work with the process, the quicker it will happen. This means taking proper care of ourselves, eating properly, and getting appropriate levels of exercise once the doctor clears us for exercise.
It is not recommended to hold small animals against our necks for at least a week after RAI. And, depending upon the dose someone is given, it might be a tad longer. It would be important to talk with your own prescribing nuclear medicine doctor (or technician) to get a recommendation based on your level of treatment, JeanMS.
Hello – Others who are on thyroid hormone replacement might chime in here, but I am not aware of any shortages that have occurred with products such as Synthroid. There is a product called Armour Thyroid that contains both T3 and T4 (Synthroid only contains T4) that was on back order last year. My understanding is that this situation has been corrected.
Also, there is a drug called Thyrogen that is used in the treatment and monitoring of thyroid cancer patients – and there currently *is* a shortage of that drug.
I think I can weather this storm. Although I must say, the atrial fibrillation has come back with vengeance. More than anything at this point I really appreciate the valuable information and support I’m receiving from this site. Thank you all!
I know the heart palps and a-fib issues are quite scarey. I hope they get controlled soon, Dave.
No, Kimberly, I haven’t heard of any shortages of synthroid products. And, given the huge number of people that are on it, I don’t think the manufacturers have any shortage of customers. (Not just those of us with Graves, but also folks with Hashimotos, thyroid cancer patients, and the 10% or so of the population whose thyroids peter out as they age. A LOT of older people find themselves taking the levothyroxin (Synthroid) products.)
My memory is vague, but I do recall some problems with Synthroid. A quick check on the Web showed that there was a recall in 2009, and I may be thinking of that. I know of problems with Armour simply because a friend who was taking it would report that from time to time she had difficulty in getting it (not to mention the difficulty of getting a physician to Rx for her because apparently doctors prefer you take Synthroid or its generic form over Armour.)
In a perfect world, doctors would have a way to treat Graves, rather than destroying the organ it attacks. But then in a perfect world, you wouldn’t get Graves. My beef is mostly that some of the after affects and care instructions for this RAI treatment is mysterious and unsettling. You are, after all, dealing with radioactive matter, and, yes, I know it has a short half-life and it only affects the thyroid. But if it were really so harmless, then why the instructions to avoid close contact with others and to make sure you void yourself daily, etc. etc. Some of the stuff I’m reading here is the first time I’ve heard about it, and that’s what’s alarming to me.
Perhaps my problem is that my doctor never told me about this. I don’t think he’s trying to deliberately deceive. I think it’s more he considers it so routine to him as to note require anything more than passing attention or discussion. That will have to change before I can be comfortable with doing this, and maybe perhaps continuing in his care.
Dental technicians and xray technicians cover us up with lead aprons, and leave the room before turning on the xray machine. These types of precautions have a lot in common with the ones we are given for a period of time after RAI. It isn’t that the particular dose of radiation in the xray is harmful all by itself. But radiation exposures are cumulative over a lifetime, and to avoid unnecessary exposures is a healthier behavior. The people around us, who are not suffering from diseased thyroids, don’t need the exposure. Also, (the lead apron), the smaller the being, the more harm doses of radiation "might" be. So we cannot do RAI if we are pregnant, and if we have small children, or pets, we need to avoid cuddling with them for a week or so. Our medical people prefer to err on the side of caution.
Online, you will find some folks spreading horror stories. Whether or not any of these are true can be difficult to determine. Obviously, any medical intervention has potential adverse side effects and SOME people have had less than optimal results. In our case, though, our treatment options, while not being perfect, tend to be rather safe. Your best guide is going to be your doctor(s).
I really wish that docs would do a better job of explaining what happens *after* RAI. When my own doc was discussing treatment options, all she said was “after RAI, you’ll go hypo – and then you’ll just take one pill a day to correct that.” I had this vision of having RAI one day, being hypo the next day, and then taking a “hypo pill” every day, just like taking an aspirin for a headache!
In reality, it takes varying amounts of time (one recent article says 6-14 weeks) for the RAI to do its work in destroying the thyroid gland. Once you do go hypO, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.
The process is the same after a total thyroidectomy – except that the initial dose of replacement hormone is started right away, because your body is no longer capable of producing *any* thyroid hormone.
There are members of this board who have chosen RAI as their treatment option and are pleased with the outcome. But before selecting *any* of the three treatment options, it’s important for patients to fully understand the process – as well as the risks and benefits.
I agree, Kimberly. I chose RAI because it seemed a better alternative that surgery, and because doing pills is a bit wearisome. I do think getting some good explanation about what to expect is just plain good, conscientious medicine. Saying that your best guide is your doctor is pointless when you’ve lost faith in your doctor. I contrast this with my experience in having knee surgery. The doc and his staff spent three hours talking with me, making sure that I understood it and felt comfortable about the procedure. He let me ask questions until I felt I could practically recite the procedure by heart. was told what to expect before, during and after, what PT and OT would be like, and attended a class on knee surgery. Here, there’s been no talk expect beyond saying that I’ll probably end up hypothyroid and be put on a Synthroid. I’m getting sent to nuclear medicine as if all I’m doing is having a blood draw. If I hadn’t gone online and read the instruction sheets from the Endocrine Society and other clinics, I would have not had any idea about the precautions. That sort of absence of communication isn’t only frustrating, it’s creepy.
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