[Kimberly]

#1062012

Hello – Hopefully, you will get some responses from others who have had RAI, but I just wanted to point out that when you are in the early stages after treatment, it’s important to look at the “normal” ranges for your Free T3 and Free T4, as TSH can remain suppressed for some time in Graves’ patients. (Each lab has their own range for what is considered "normal").

Hope that you can get some relief soon!

[Suz01]

#1062013

Thank for the answer! Do you know what the normal free T4 levels are?

[snelsen]

#1062014

It varies with each lab and the controls they have set up.
My lab is 0.6-1.2
Shirley

[Suz01]

#1017981

I got my blood work results back at 14 weeks post rai and still hyperthyroid. TSH: 0.01 and free T4 2.48. 2 weeks ago was TSH 0.01 and free T4 2.13. Rai hasn’t worked so far. I have to give it 2.5 more months to see if it will kick in and if not, going for surgery. I had another a fib episode last weekend that lasted 24 hrs. I’m still on 150 mg of beta blocker a day and 5 mg of methimazole and the pradaxa. Are there other people on this forum that it took longer for the rai to work?

[Kimberly]

#1062015

At the lab I use, the "normal" range for FT4 is 0.8 to 1.7 — which you can see is quite a bit different from Shirley’s lab. So it’s definitely important to understand the "normal" range for the lab where your own testing is done.

[ZachB]

#1062016

I had RAI done twice, I went through 7 docs to find one that would do a partial burn out. Did this around 1996 worked very fast like 3 days off of memory. It was a huge dosage the Radioactive Medicine guy said it was a dose that would burn out any normal thyroid completely, and it was perfect. I was good for a long time, then Graves came back but minor. I was on around 5 to 10 mg of tapazole or methizimole and I didn’t have any issues other than not keeping on top of blood work as I felt fine.

I moved and went through a few docs that all wanted to burn it out completely. This time I took 16mcg’s of RAI 181 and it would have only taken 9 to burn it out to get to an even level…my doc said this was the only right way to do it, burn it out and take synthroid. I did this about 1.5 months ago and I went HYPO about 2 weeks ago. I hate it and am kind of regretting it…now i’m on 50 mcg’s of synthroid with a TSH of .056 T4 of .69. I’m super light headed and starting to self medicate as I feel like i’m going to pass out.

I keep saying it’s for the best and i’ll get level soon, as the possible side effects of graves and I developed Sarcoidosis…so i think that might be connected.

I think it’s different for everyone but i would hold off as from my experience RAI definately works eventually

[Bobbi]

#1062017

I’m not sure what you mean, ZachB, by "self-medicating" but if you mean you are tinkering with your dose of synthroid, STOP. I truly do understand that you do not want to feel crumby longer than necessary. None of us do. But the mechanism by which your doctor will be able to find the correct dose of replacement hormone for you requires that you remain on a specific dose long enough for a blood test to measure its effect. This is typically six weeks to three months. If you test too soon, or tinker in between, the blood test results will not be valid. You need the test to be valid to avoid going on a hormonal roller coaster and to get to your own special dose of replacement as quickly as possible.

[ZachB]

#1062018

Yes, I changed my dosage but not bouncing it around…I just started taking synthroid 3 days ago, and I guess I didn’t give the 50mcgs a chance (one day). But I feel like i’m going to pass out alot, see stars when i exert myself. It feels like I’m not getting enough blood to my head and have to hang upside-down. My head will be cold to the touch especially in the evening. Slow resting heart rate and slow during exercise.

All of these syptoms are things i’ve never experienced before, so I bumped myself up to 150mcgs two days ago and will keep it at this until my next blood test, and i’ll definately tell my doc. For me the syptoms outweigh the risk of putting my numbers hyper and backing down the meds if necessary. I still have these syptoms but not as bad on 150mcgs, I’m definately following the rules taking meds AM w water and no food.

Do you know if these could be side effects to synthroid or levothyroxine (generic)? Or is there a lag time to this medicine kicking in? Do you know what mcg’s a Dr prescribes for a full thyroid removal?

If I knew I would feel like this I would have not done the 2nd RAI. Also my thyroid cells are still being killed off by the RAI.

[Bobbi]

#1062019

No, please, Zach, do not do that. 150 mg is a huge dose of synthroid. It is also three times as much as your doctor recommended. Sythroid IS thyroid hormone. It will make you hyperthyroid if you take too much of it. And you cannot tell how much you need by guessing. It needs to be carefully calibrated. Please talk with your doctor. It could be that he started you out on the conservative side of things, and would be willing to try a higher dose. But it might be that based on your labs, he thinks you won’t need a big dose, andhe’s guessing more or less where he thinks you’ll end up.

[ZachB]

#1062020

Thanks, I’ll call the doc on Monday and do what he says. I really wasn’t expecting to feel like this, I have all the Hypo signs still.

[Ski]

#1062021

There is a slight lag in feeling the effects of replacement hormone ~ it needs to build up in sufficient quantity in the bloodstream before it is consistently available when your body needs it. The 6-week feedback loop has to do with that buildup, as well as the pituitary gland’s "read" of the thyroid hormone in your bloodstream, which determines the amount of TSH released by the pituitary.

Without the feedback loop working consistently on one dose for at least 6 weeks, the final TSH level is not reliable and your doctor won’t be able to make the correct dosing decisions. I completely understand wanting to feel well ASAP ~ the best way to accomplish it is to follow the protocol exactly. It takes a while, but the path will be shorter if you can count on your blood tests along the way.

Also, do start a symptom diary now ~ it can help when you are interested in tweaking your dose slightly in order to get to YOUR normal. The normal range is as big as Texas, but you will feel your best within a much narrower range. A symptom diary can help you and your doctor see which direction you may want to go in your adjustments, and starting it now can give you a good idea of the things that typically occur for you at certain points along the way.

[Ski]

#1062022

Oh, one more quick comment ~ in the many decades RAI has been used, they have found that there is no such thing as giving "just enough," due to the antibody action in the body. ANY thyroid tissue that remains in the body can be made to overproduce by the antibodies, and it will also be slowly destroyed by the process, which results in some really odd spikes and valleys, instead of a nice, stable level of thyroid hormone. Fluctuations themselves can cause damage to the body (in addition to imbalance), and keep the patient from feeling at all well, so removing all of the thyroid tissue ends up resulting in a shorter path to health.

[ZachB]

#1062023

Thanks Bobbi and Ski, yea that was a bad idea changing my meds I’m sure I was my doctors worst nightmare changing my tapazole dosage according to how I felt for a few yrs and missing labs apointments etc. I talked to the doc and am staying on 50mcgs of synthroid. This is a great blog it has been a big help for me. I feel great, more organized, and i’m seeing my wife and kids more. Still foggy and lightheaded, but i’m sure the doc will boost my synthroid slowly over time.

[Krisann79]

#1062024

Ski wrote:Oh, one more quick comment ~ in the many decades RAI has been used, they have found that there is no such thing as giving "just enough," due to the antibody action in the body. ANY thyroid tissue that remains in the body can be made to overproduce by the antibodies, and it will also be slowly destroyed by the process, which results in some really odd spikes and valleys, instead of a nice, stable level of thyroid hormone. Fluctuations themselves can cause damage to the body (in addition to imbalance), and keep the patient from feeling at all well, so removing all of the thyroid tissue ends up resulting in a shorter path to health.

This is basically what my Dad told me tonight (who had his fully ablated). I had 20 millicuries and still have a functioning thyroid and am going through HELL trying to get on with my life. It almost makes me wish I had a clean slate like he did. He bounced right back after going hypo.

[mizkity1]

#1062025

To Suzie and the original post, I had RAI done about 5 years ago and as far as I’m concerned did not work. I wanted it removed completely but the Endo refused. Said I was too young (although had no problem getting an ablation done at the age of 25) HA! From what I’ve read it’s a regenerative organ and apparently mine grows like nobody business, constant med changes and always feeling ‘off’. If I could do it over I would insist that they remove it entirely. And I am currently looking for a Doc that will do this for me.

Good luck with yours and please remember nobody knows your body like you do so if something doesn’t feel right, Make them Listen!!!

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