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Hi-
I am new here and will fill you in on my journey with Graves first of all. I am a 42 year old female and I truly believe that my graves disease was caused by severe emotional stress. Within 3 months I had 3 family members pass away and then my ex-husband (father of my 13 and 15 year old) passed away 2 months later. I had to endure a lot of "game playing at work" with other employees that were extremely jealous of my new position that I had attained a few years ago. I recently told my job would be eliminated and moved to a plant down south, so I lost my job of 10 years 6 months ago. Shortly after that, while at home I would notice that I was shaky and my legs would even tremble to the point of having a hard time keeping my foot on the gas pedal while driving. I was also very weak, I could hardly get upstairs from doing laundry and barely lift the gallon of milk off the table to pass it. Shortly after that I also started to notice that I seemed confused and had a hard time talking English! My words were mixed up and I my voice was shaky, I seriously thought I was getting Alzheimer’s like my mother! Every morning, my eyes would ache and hurt when I moved them, then I started to get swollen under and above my eyes, big bags. All these symptoms occurred within a month, so I found myself some health insurance because I was sure I was the next one that was going to die. A month later on December 5th, I was stretching and ran my hand over my neck and noticed my neck had a huge lump. I knew right away that it was my thyroid gland, so I made an appointment with my primary doc. He did blood work and called me and said I was "slightly" hyperthyroid. TSH 0.10 L (0.30-5.00) and Free T4 5.33 H (0.55-1.12). All of the symptoms I had fit this diagnosis. He said we would monitor it and take my blood again the next month unless I get a rapid heartbeat. Well 3 weeks later I was put on Atenolol because my heart rate went through the roof. The did an ultrasound and I was sent to an endocrinologist. She right away said I was 5 times higher than where I should be and we needed to check my Free T3. My Free T3 came back at greater than >28.0 extremely high(2.0-3.5). I was scheduled for a TPO antibody test which was normal 1.4 (<9), Uptake and Scan and was diagnosed with Graves disease due to the uniform, high uptake at 64% in 4 hours. I had RAI of 12.6 millicuries on Jan. 28th, 2011. Here are my labs since then. STILL HYPER….5 weeks post RAI labs: TSH 0.10 (0.30-5.00); Free T4 3.29 (0.55-1.12); and Free T3 is 15.9 (2.0-3.5) 9 weeks post RAI labs: TSH 0.01 L(0.30-5.00); Free T3 11.9 H (2.0-3.50). I just had my 11 week labs done and will post them soon.
Ok, so for a few questions…. I had a huge goiter it is not noticeable anymore but I can still feel my thyroid in there it is soft and small in the morning and larger and firmer as the day goes on. Will it have to be to be totally gone before I could go hypo? My periods were always on time to the day, when extremely hyper they were super light and short, after RAI I missed a month. This month it seems the heaviest it’s been in over a year, more like before any thyroid problems, could this mean things are normalizing? My first set of labs after RAI dropped quite a bit and now they seem like they are dropping slower, I am sooo afraid of having to do a second round of RAI, could this take awhile for me since I had such extremly high Free T3? The endo said I will not start replacement meds until I am low on my FT3 since this was my driving force of hyper, won’t my FT4 be bottomed out by the time my FT3 is low???
Thanks in advance for any answers to my questions and I am sorry this is so long for my first post, I promise any other posts will be short and sweet!Don’t worry about long posts ~ sometimes we get carried away!
” title=”Very Happy” />I don’t have a lot of time to respond right now, but I wanted to let you know that it’s very common for RAI to take a while to work ~ it takes at least six weeks just to flush out the excess thyroid hormone that existed in your bloodstream on the day of RAI, so try to be patient. Please don’t worry that you’ll need a second dose, not yet.
When I had my RAI, the radiologist told me that it would do the bulk of the work in the first six weeks, but that it can continue to have an effect on your thyroid for up to six months.
I hope that helps! I’ll check back in when I get home and try to fill in some more info for you…
Well the new doctors office called with my newest lab results… Still hyper, but I am continuing in the right direction. Free T3 is 9.4 (2.0-3.5) single digits now, yea! and my Free T4 is 2.96 (0.55-1.12). I am scheduled for new labs in 3 weeks but may call before that if I start experiencing hypo symptoms. By looking at the way my numbers are dropping, three weeks from now could be close. They will not put me on Synthroid until my Free T3 is 2.0 or under. I’m excited to get there and be done with this hyperthyroid, but still nervous about the "new" unknowns of hypo. Ski – Thanks for your comments and helpful words, I sure hope this post will help other hyper people or people who are contemplating having the RAI.
Patti
Just a comment for you about dreading hypo. I know that there are many folks who feel pretty awful while even minorly hypothyroid. But there are some of us — and perhaps it includes lots of people as well — who feel pretty good when hypo. I’m not talking about severe hypo, just minor hypo. I’ve gotten to a TSH of almost 13 and not felt bad. Scratch that: I not only didn’t feel bad, I didn’t know I was hypo. Hopefully you will be more like me than not.
Your doctors seem to be monitoring you frequently, so most likely there is very little chance that you will go excessively hypo.
Wishing you good days ahead.
Today I woke up with what seemed to be a cramp in my left butt cheek (sorry) and then it was just sore the rest of the day. I also started getting elbow pains, quick, dull pains. Has anyone experienced anything like this, or am I just hoping I am hypo after being hyper for so long, lol. These pains are very real though. I just had my last labs 10 days ago and was still hyper then, so I can’t possibly be hypo that quickly…. could I?
Hello – Joint pain can be a symptom of hypO. Other common symptoms include fatigue, joint pain, weight gain, constipation, dry skin, cold intolerance, and slow pulse.
Hopefully, your doctor’s office is testing Free T3 and Free T4 in addition to TSH, as TSH can remain suppressed for quite some time in Graves’ patients. Until you get stabilized, FT3 and FT4 are actually better benchmarks of whether or not you are still hypER.
Normally, it does take a few weeks for levels to shift from hypER to hypO — however, I’ve seen posts on this board from members who went hypO in as little as two weeks…so if you still feel poorly in a few days, it wouldn’t hurt to get another set of labs run.
Oh boy…. Well I just got the results from my 4th set of labs since my RAI on January 28th and my numbers hardly changed since the last set of labs 3 weeks ago. My free T3 has actually gone up from 9.4 on 4/2 to 9.6 on 5/3. My Free T4 has dropped some from 2.96 to 2.59. I was hoping to be almost euthyroid or closer! Wow, now I’m scared I am going to need another dose. Has anyone ever had this happen where the numbers consistently drop and then stop and go up??? I am soooo frustrated with the thyroid business. I just want to get off of my atenolol and I can’t seem to, now I realize why because I’m still pretty hyper!
Hello – Hopefully, you’ll get some responses from others who have been through RAI. However, I wanted to mention that some patients do take Anti-Thyroid Drugs to get their levels down more quickly after RAI. Obviously, the meds have potential side effects that need to be considered, but this might be worth discussing with your doctor.
Best of luck!
Thank you all for the responses.
Today (14.5 weeks after RAI) was awful! I have had a headache in my eyes for the last 5 days and now today had the rapid heart rate again, shaky, and had to take a whole atenolol. I have been on a half for months and now suddenly need the whole thing to calm my heart down. My thyroid gland gets puffy and then goes back down MANY times during the day. One hour I can feel it, then next I can’t.
I am sitting here bawling feeling like this is never going to end. I was feeling soooo great and now this. Warm weather is here and I just wanted to have a great summer! When I lost my job in October I lost my good insurance so I picked up my own policy and chose a 9,500.00 deductible (2 weeks before ANY thyroid problems), so this has also been a financial burden on me too. So far I have 4,500.00 racked up and paid. But just can’t imagine going through the uptake and RAI again.
SO now for a few questions. Can the thyroid try to fire up again before it dies??? For those of you who had a second RAI, why? Did your numbers drop like mine and then quit? Did they NOT drop much at all? Was it longer than 6 months and still hyper? Please let me know WHY you were given the second RAI.
Sorry for the pity post…..
I had a second RAI, but it took me 2 years to admit I needed it. My T4 levels dropped, but my TSH just never rose. My doctor tried a "jump start" with methimazole, but then told me he intended to have me stay on it for the (then) recommended 2-year period before allowing me to stop taking it, which I didn’t want to do, so he let me go off the methimazole and see what happened to my levels. They returned to that "normal T4, suppressed TSH" and so I agreed to do another RAI. In the meantime, I was not feeling very badly, or at least I thought I wasn’t. Once I had the second RAI and my levels truly normalized, I could see the difference. At that point it’s kind of subtle.
The doctor who gave me my first RAI told me that it does most of its work in the first 6 weeks, but continues to work on the thyroid for up to 6 months, so that was my first benchmark for deciding whether or not to do a second treatment. After that, just the period of time trying this and that, and hoping that the natural progression of Graves’ would finally do in my thyroid completely, took long enough that it was almost 2 years later before I went in for the second treatment.
If your thyroid was not completely destroyed by the RAI in the first six weeks, it could bounce back & forth until it’s gone completely. That’s why doctors have pretty much agreed that there’s no such thing as "just enough" RAI to leave a patient at stable thyroid hormone levels ~ no matter what amount of thyroid tissue remains, it can be affected by the antibodies and forced to overproduce. Even if that doesn’t make you hyperthyroid, the volatility is not good for you. It may be premature to decide you need to do the treatment again, though. Try and keep a symptom diary to bring to your doctor — it can help you be on the "same page" with your current status.
Thank you so much Ski for your reply! It really helps me right now to understand why people needed a second dose. I am staying hopeful that the first dose will work, and that this is just a "bump" in the road.
My Free T3 (which is all they really care about for me) has gone from greater than 28 (severe) at diagnosis, to 15.9, to 11.9, to 9.4 and then up a tad to 9.6. Normal labs ranges for Free T3 are ( 2.0-3.5 ) so you can see being at 9.6 I still have a ways to go to even get into the normal range……My Free T4 is consistently falling and has gone from 5.33 at diagnosis to 3.29, to 2.96 and now is at 2.59 with ranges of (0.55-1.12). A ways to go here too, this doesn’t seem to be falling number wise as quickly…
I am just hoping my Free T4 continues to drop as that’s what is converted to Free T3 correct? I figure with less Free T4 there should be less Free T3 converted? I hope this makes sense… Hopefully things will work out the way it is supposed to…. This faster heartbeat these last few days has thrown me for a loop as it had been around 68 bpm on 1/2 atenolol for months. Now it’s been running around 80 bpm again. NOTHING like it was at diagnosis (over 100), but to me seems like a step backwards. Maybe these spikes are completely normal ??
Again, thanks! You guys are so re-assuring and helpful! So glad I found this board!!!
Latest update:
I am now 18 weeks ( 4 months and 2 weeks) post RAI. This is taking WAYYYY to long….. However, the free’s are still dropping….. very slowly…..I think I am going to tell them no more labs until I am able to get off of the atenolol as labs every four weeks is costing a fortune. The way I look at it, if I can go without the beta blocker, my Free T3 should be down closer to normal…..right?
My labs from yesterday are: Free T3 is 9.1 (range 2.0-3.5) and my Free T4 is 2.27 (range 0.55-1.12). So my Free T3 has dropped 0.5 and my free T4 has dropped 0.32.
SNelson-
Yes, I am feeling WONDERFUL, except for the palpitations and heartrate that likes to get worse in the evening. I am trying to wean off of the atenolol BUT, cannot seem to. I am only taking 1/2 of a 25 mg. tablet per day. Otherwise I feel great. I have gained 9 of the 11 pounds that I lost back. I just never expected it to take this long, I have been following others that had RAI after me and are already hypo…. but then my numbers were extremely high.
Patti
that is awesome that you are feeling good! yay! It is really nice to hear when people get better on this site.
i don’t understand why it is so hard for the doctor to give a big dose so people don’t have to do the RAI more than once. From what I read even a "high" dose is still low compared to what hey give those with cancer, so why do so many people end up having to do it again?
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