[jmwatson1982]

#1060108

Thought this might be a great place to ask! I had my second RAI done back in February, and at my four week blood work, I was severely hypo (talking TSH of 82) and I seemed to stay quite hypo until May. The highest levothyroxine I was on was 137mcg, but something just didn’t feel right. I went back about three weeks later and I suddenly did a complete 180-I was severely hyper. That was mid June- since then, my dose was bumped three times-to 112, to 88, and now a “welp, wing it and try half!” And yet it rings up worse each time. More hyper than the time before.

My question is if anyone else had such a sudden swing? I’m still experincing many hyper symptoms-hunger, weight loss, hair thinning, low blood sugars despite taking less insulin-all the stuff I had before I was officially diagnosed with Graves’ three years ago. But they want me to wait a couple more weeks to recheck my TSH, but man…it’s rough. Did anyone experience this? They feel my thyroid “died,” but haven’t followed up with any kind of RAIU scan just to check. I’m starting to wonder if my severe hypo was transient?

[Kimberly]

#1180438

Hello and welcome! Hopefully, you will get some responses from others who have had RAI.

Hopefully, your doctor is testing your Free T4 and T3, and not just TSH. TSH can take some time to rebound after RAI treatment, so relying *only* on TSH can potentially send a patient severely hypo. If you look at the “Treatment Options” thread in the announcements section of the forum, there is a link there from the American Thyroid Association and American Association of Clinical Endocrinologists that covers treatment of hyperthyroidism, including testing guidelines following treatment with RAI.

Replacement hormone builds up slowly over time in the body, which is why testing is usually done 4-6 weeks apart. However, if your hypER symptoms become more worrisome, don’t be afraid to be the “sqeaky wheel” and demand a quicker set of lab tests. The info that you posted on symptoms can be helpful for your doctor as well.

Hope you can get some relief soon!

[karenz516]

#1180439

@jmwatson, I has RAI on 12/14/12 and and still had a TSH of 0.005 up until April (my endo also tests Free T3 and Free T4 with a Complete Metabolic Panel, Magnesium and Vitamin D test every 6 weeks, from that time until April I was on no thyroid meds, then in April 2012 I my TSH shot up to 50 and I went hypo, he started me on .75 Synthroid, then next round my TSH was 15 and he upped my dose to .88 and now I am on 100. All the while he still tested and monitored everything I listed, dosing accordingly. Each adjustment took some getting use to. I feel good right now at 100. I have episodes of achy legs from the knees down, but my hair is not thinning anymore (with the help of Biotin Forte 5 mg., and Nexus Biotin Shampoo), and I don’t see to be putting weight on as fast as I did when I had jumped to hypo, now working on losing the 20 lbs. I put back on. Hope this helps.

Karen

[jmwatson1982]

#1180440

Oop, I forgot to add in the FT4-during my hypo state, that showed hypothyroidism-0.8 when the lab range is 0.9 to 1.8-and the last FT4 went from that to 2.7, along with a TSH of .04, so something definitely jolted! I don’t have any FT3 labs, sadly. They only run Total T3, which is normal-in the low 100’s out of a range of 60-180. My last T4 was done in early July, but I don’t have the results-I had gone to the ER for something else entirely, they noted my pulse was fast, I told them what was up and they did a TSH on me, and that time was .03. I get waiting, but its quite tough when you feel hyper and have it ringing up hyper every time so far. I go back next week for an appointment, perhaps I can ask then if I can do the blood work that day to see if I still am. They said I was the only patient they can recall in many years of going hypo to hyper so quickly on medication, and that just raises a red flag for me that the RAI didn’t work again.

ETA: thank you for welcoming me and reminding me about the biotin, by the way! I took the biotin last time around when i was just on anti-thyroid drugs, but I’ll definitely pick up some more and look into the shampoo.

[jmwatson1982]

#1180441

Update: My latest results went back to severe hypo, so it looks like my RAI did indeed work this time,(my TSI went down a lot, too!) and half of 88mcg was simply too little. So right now, we’re going to try alternating-88mcg and 44mcg, to see if my body just needs something in the middle. Frustrating, but at least I know my RAI actually worked! (last time it took forever to convince them that the first one didn’t take.)Now, if I could only find that sweet spot…

[Kimberly]

#1180442

Thanks for the update – hope this latest change does the trick!

[LauraNormoyle]

#1180443

Hi Kim,

I am new to the forum and am hoping you can provide me some feedback. I have had Graves disease for 15 years and Tapazole has kept it pretty under control for that entire time. I am 49 years old and in the last year I have had trouble keeping both a normal TSH and TFree 4, the TSH seems to not stay incheck for some reason. I wonder if the fact I am approaching that “pre menopause stage” has an effect on the thyroid and how it works? Does anyone else out there have any feedback on this topic OR even anyone known to stay on meds for longterm use? Any feedback much appreciated,

Laura

[Kimberly]

#1180444

Hello – This thread from a while back has links to a couple of studies on longer-term use of anti-thyroid drugs:

http://gdatf.org/forum/topic/42509/

Has your doctor been able to provide any insight as to what is going on? We’re fellow patients here, not docs, but it certainly seems that there could be a connection. We do know that having thyroid levels out of balance (either hyper or hypo) can affect menstrual cycles. I haven’t seen any research, though, that is specific to long-term use of anti-thyroid drugs.

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