Grave's disease and supplements
Wendyma1
Posts: 289 Member
Hi there-
Hope someone can help me. Are there any supplements you guys would recommend that I take? This disease is eating away at my muscles and I seem to be getting weaker and weaker. I spoke with my endo yesterday who had me get my blood drawn to check my Free T4/T3 and TSH levels to see how the RAI had taken affect. The only difference is that my T4 levels dropped .5 so her recommendation was to retest in 6 weeks. She did not even touch the subject of supplements, which was my original question to her.
Any suggestions?
Thanks,
Wendy
Hope someone can help me. Are there any supplements you guys would recommend that I take? This disease is eating away at my muscles and I seem to be getting weaker and weaker. I spoke with my endo yesterday who had me get my blood drawn to check my Free T4/T3 and TSH levels to see how the RAI had taken affect. The only difference is that my T4 levels dropped .5 so her recommendation was to retest in 6 weeks. She did not even touch the subject of supplements, which was my original question to her.
Any suggestions?
Thanks,
Wendy
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Replies
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What meds are you currently taking? A T4-only like synthroid or levothyroxine? Any T3 med like cytomel? Did the RAI fully kill off your thyroid so that you're dealing with hypo now?
What were your actual free T3 and free T4 results (including the range your lab uses). Your free T3/T4 should be ideally in the top 1/3 of the range. Assuming you're in the US and that your lab uses the most common range of .8-1.8, a .5 drop in free T4 IS HUGE. You're quite possibly hypo, with your doc not managing it properly. Retesting that far out, when you're symptomatic, is not frequent enough.
I would also look at getting your Vit D, iron, ferritin, and B12 levels tested.
Are you talking other supplements, like calcium etc? I can pretty much guarantee your Vit D is too low - I can't recall the lab range exactly in the US, but you want it at least around the 60-80 range. As an example, I've been taking 3000 IUI for 2 months solid and am only at 41...
(Remember to take iron and calcium supplements at least 4 hours before/after thyroid meds)0 -
Thanks so much for the reply. I was diagnosed with Graves/Hyperthyroid a month ago. 3 weeks ago, I had RAI. I have listed my before and current blood work levels. I am not currently on any thyroid medication or any other supplements. I am only on a beta blocker to help with the increased heart rate and tremors.
TSH:
10/31= <0.01
11/26= <0.01
Free T4:
10/31= 2.3
11/26= 1.8 (standard range .8-1.7)
Free T3:
10/31= not taken
11/26= 161 (standard range 50-170)0 -
And I forgot, my ferritin levels are low, my B12 levels are slightly high, iron levels are fine and vit. D levels were not tested.0
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Wow, that's a really quick turn around time on getting you to do RAI. Personally I have issues when they choose to move that quickly, but what's done is done, and it's all about making sure your levels are ok going forward.
It makes sense that they're waiting to see what your thyroid does over the next little while, but they should definitely be testing you pretty frequently. You might find it going up and down for a while, but it will most likely eventually completely die off.
Unfortunately, you're kind of in the waiting game right now. I would definitely look at getting that Vit D tested When are your next labs scheduled to be run? Your free T3 and free T4 levels are basically just above where you want them, so you really don't want them to drop much lower. However, I believe they can go up and down quite a bit before they settle....
If you join this group (don't worry if you aren't looking to have kids, these ladies just know a lot about thyroids) and tell them you're 3 weeks post RAI they can give you a better idea of what to expect and what to do:
http://community.babycenter.com/groups/a3695/thyroid_issues_concerns0 -
Like you, I was also first Graves. I first tried to treat with Methimazole and a Beta Blocker. Not sure what my numbers were, but my Endocrinologist said I was in the "super" Graves category -- basically, almost off the charts Hyper. Things were working fairly well, but then I developed an allergic reaction to the Methimazole. So, they waited for that to clear out of my system and then I had the RAI. My endo said it would basically take 3-6 months to see the final result of how much of the thyroid was killed off, but it has certainly taken a lot longer to get my levels about right. That was in 2009. Can't really remember if they started me on the synthroid while waiting for my thyroid to settle -- think it was the 3 month mark and then started adjusting from there.
Either way, I was used to eating like I was still Graves and gained a TON of weight. Finally figured out I can't drop the weight like I was able to do before I got sick, but now that I have found MFP, this seems to be working for me.0 -
Thank you both for your responses! I will wait it out and hope to feel better soon!
Wendy0 -
It will take some time for you to start feeling better even after RAI. My Graves was undiagnosed for almost 10 years because I moved many times. By the time I got back to CA and found a new doctor it was very bad. Had RAI treatment within 3 weeks of my official diagnosis. It took about 4 months post RAI for my endo to get me on a good amount of Synthroid. It probably took close to a year for my muscles to feel "normal" again. Just give yourself time. If you're still on Beta Blockers for the tremors, it will take some time to feel normal as well. I opted to not take those. You could take a multi-vitamin if you aren't already taking one, but steal clear of "herbal" supplements as they can have a bad reaction to your medications. Depending on where you live you might be able to find a pharmacist that also knows alternative supplements, but there aren't many of them. Good luck!0
