[Anonymous]

#1020440

And everyone else. I’m so grateful for your input and others on this site. I’ve learned so much in the past few weeks, I think I’m still trying to comprehend it all. I know it takes time, lots of it. And not easy time either. I appreciate everything on this site and all your thoughtful responses on this bulletin board. I’ll definitely be a frequent visitor here

[Anonymous]

#1077192

I was diagnosed with Graves in March after the loss of my husband. I understand that this disease was probably dormant and the stress of losing my husband triggered it into action. My symptoms were high blood pressure, rapid heart rate and loud pulpatations at night. I chose to go on Tapazole which I am not happy about due to the side effects that I have read about. My TSH was .035 and I worked very hard to overcome my high blood pressure and rapid heart rate symptoms to the point that I could stop taking my beta blocker and reduced my medication to half. However, when I went back to the Endo , she advised me that I wasn’t any better. I find that hard to believe now that I am symptom free but I guess it was it is. I am considering RAI but can’t seem to pick up the phone to make that call. I am 57 years old , very healthy , and would like to know if anyone out there has had this iodine therapy at my age and what their experience was. I have spent hours on research but haven’t found anything geared to the “older generation”. I am very fortunate to not experience the symptoms that are talked about here as I have been able to work throughout. Thank you in advance for any responses that I might receive.

[Anonymous]

#1077193

Hello Miss Harriet,

I wonder if you are receiving copies of your blood test results? You are entitled to them, so if you haven’t been getting copies, I would suggest that you ask the office to make copies of prior tests for you, then make sure they send you copies for all future lab tests. When your doctor says you are “no better,” I wonder what exactly that is supposed to mean. Your symptoms abated, so your levels may have improved, without reaching normal levels. I’m sure it would be encouraging for you to know something like that. It still means that the Tapazole is not effectively controlling your hyperthyroidism, but you would be able to see some improvement. Little things can make a big difference to Graves’ patients, especially since we are always told to “wait, wait, wait.” Also, a higher dose of Tapazole might be a solution, but since you seem hesitant about that, perhaps that’s not your answer.

As far as different information for those in their older years, I’m not sure I’ve ever seen data solely dedicated to studying an age group (well, except pediatrics). From my layperson’s knowledge of Graves’, it’s hard to imagine anything that would be particularly different, especially in terms of RAI, for an older individual.

I do know that with Tapazole or PTU, the effects to the liver can be more pronounced because the liver has less ability to handle foreign substances as we age. That’s another reason to choose something other than Tapazole for treatment, but it was still a good first try. (Just as an aside, when we take Synthroid, we are not stressing the liver, because it is not a “medication” per se, it is chemically identical to the thyroid hormone our thyroid would normally produce and does not require separate ‘processing’ in the liver.)

Remember, if you are unhappy with Tapazole and are having difficulty accepting RAI, surgery is an option. It comes with its own risks, of course, so it’s wise to truly evaluate every option you’ve got. If you choose surgery, choose a surgeon who does a lot of thyroidectomies with very low complication rates.

I chose RAI, and I too had the initial reaction of “WHAT??????”, but in reality we receive a very small dose (thyroid cancer patients have thyroidectomy and THEN they receive RAI in doses up to 20 times what we receive). RAI is non-invasive (I have a ‘thing’ about cutting into my throat), and effective. It can take some time, however, to bring your levels down, so that is another point to consider.

My personal chant is an exhortation to TALK with the dosing doctor before you have RAI, if that is what you ultimately choose. The endo sends you to a radiologist/oncologist who will calculate the dose based on your uptake/scan numbers — AND HIS OPINION. The first time I had RAI, my radiologist’s “opinion” was that he could give me a low dose and make me “perfect” (rather than hypothyroid). I had already researched that as an option and rejected it in favor of total ablation of my thyroid gland, and my endo was in agreement, but that information did not get to the dosing doctor and I ended up with a very low dose that left me subclinically hyperthyroid (regular T4 numbers, but suppressed TSH), and over a year later I needed another dose to truly find NORMAL. If I had only had a five minute discussion with him prior to going in for my dose, I would have saved myself the hassle of a second dose — and of course the intervening months when I was not well yet.

You are lucky that you’ve been able to work throughout — I was much the same. I have felt a little punk at times, but never bad enough that I needed NOT to work.

I know there are some people here who have been treated at (or above) your age, and I’m sure they’ll chime in. In the meantime, good luck in your treatment!

I’d like to say just one more thing — if your doctor seems dismissive or uncommunicative, you might consider finding a new one. This will be a lifelong connection, and it’s worth finding someone you feel is a true team member in your treatment. Make sure you ask your doctor if they are simply aiming to get your levels SOMEWHERE in the normal range, or if they are willing to work with you to find YOUR normal point. The difference in day-to-day living is enormous.

I hope this helps!

~Ski
NGDF Assistant Online Facilitator

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