[joy123]

#1060574

As you`ll see in previous postings, I had RAI just over 2 months ago. I went hypo pretty quickly and was given 25 mcg levothyroxine by my GP- increased a week later to 50 mcg.
Then I had my official endo nurse post RAI bloods done and was increased to 75 mcg four weeks ago.

As an aside – over here in UK, we`re assigned a thyroid nurse who sends us for bloods every 6 weeks, then phones to say what amount of levothyroxine to take.
I`m not over confident with my nurse however as she left me over medicated on carbimazole all last summer, leaving me feeling pretty ill. I`ve learned a lot since then via this board and I`d have cut the meds. But we assume the medics know best!

Anyway I began to feel improvement on the 75 mcg levothyroxine but went to my GP because of constant nausea. He sent me for bloods this week and just rang to say my TSH is now 9.99. (0.35-3.50)
He didn`t test the T4.
So he`s increased the levothyroxine to 150 mcg -starting tomorrow. My concern is, is this too much of an increase overnight?

He asked me to go for more bloods in 6 weeks. I told him my nurse wants her bloods in 2 weeks.
He told me to ignore the nurse and to say he`s dealing with it:)

I know you`re started on higher doses in the U.S and smaller doses over here but are you increased this much overnight?

I asked the GP if my being hypo could be causing the nausea and he thinks it may be.
Which kinda makes some sense as I had nausea during the summer when I was hypo too- but none immediately after RAI when I went hyper with the thyroid dump.
Thanks in advance you guys have helped me so much.
Joy

[Kimberly]

#1183455

Hello – Hopefully, others who have adjusted dosing after RAI or surgery will chime in with their experiences.

Going hypo post-RAI can potentially increase the risk of eye complications, so you definitely want to catch this before the TSH gets even higher. However, if you aren’t comfortable with the rapid increase, could you ask the GP about gradually working up to the new dose over a period of a few days?

I definitely wouldn’t try to self-dose…the patients I know who have tried that usually end up taking an even longer road to find that “sweet spot” dose. Hope that you can get there soon!

[joy123]

#1183456

Thanks Kimberly
My doctor has left today for the holidays so unfortunately I`m left with this decision.
I had minor TED when I was 1st diagnosed with Graves and my eyes have been a bit blurry, so that has helped me decide to increase as the doctor suggestion.

I would be interested if anyone else out there has increased this quickly though.
Thanks ahead
Joy

[SueAndHerZoo]

#1183457

Hard for me to reply to this because what I do and what you should do are probably entirely different things, but I’ll share my experience. I had a TT about 18 months ago and have been chronically hyper since then…. practically a non-existent TSH. So of course my endocrinologist is forever lowering my dosage of Levothyroxine but since I always experience lousy side affects whenever changing doses, I now insist on changing doses S L O W L Y. He always wants me to decrease by about 12 mcg. per dose change and I have told him I’ll only change by 6 mcg. at the most….. sometimes only by 3 mcg. to minimize side affects. We always go into this “bargaining banter” at every visit where he tells me how much to decrease and I tell him what I’m willing to decrease and we meet somewhere in the middle. But all in all, I’ve told him that it’s my body and it’s me that has to deal with the side affects so I only decrease in small increments. He yells at me for about a minute at my next visit for not listening to him and then he laughs because he knows it’s the same battle we have every time.

I suppose if your numbers are way out of range then doing a large dose change makes sense, but I personally don’t see what the harm is, in my case anyway, in making frequent but small changes.

Unfortunately since you can’t reach your doctor you’ll have to follow your gut as to what to do. Good luck, whatever you decide.
Sue

[joy123]

#1183458

Thank you Sue
That`s a tough call for you, with being sensitive to the meds like that. I`m hoping you`re getting somewhere in good health now?
I`ll go back and read your posts…

I split the difference and took 100 mcg yesterday and then 125 mcg today and whether it`s a placebo affect, I don`t know, but I feel sooooo much better already.
I may leave it a week now before I increase that last 25 mcg.
I think my body just sucked that thyroxine up …..
At last I can see the light at the end of the tunnel.

Happy Christmas to everyone and a very healthy 2015
(Joy)

[SueAndHerZoo]

#1183459

Glad you’re feeling better, Joy, but just be prepared for good days, bad days and in-between days as your body and hormones settle into the new levels. Our meds are not “fast acting” ones and the changes in dosage don’t usually become apparent in just a few days….. I think it takes a good 6-8 weeks for our bodies to get to and stay at the new levels after a dose change. Or maybe you’re one of the lucky ones who will find her sweet spot very quickly, and I hope you can, but just be prepared that you may still have some lousy days and that doesn’t necessarily mean you need to change the dose again. There is nothing quick in this Graves Disease process.

Sue

[joy123]

#1183460

Thanks again Sue
I`ve seen it written before that this isn`t a quick fix so I`ll hang in there and wait it out. We`re retired so that is a big help. My heart goes out to younger people who have to cope- especially at times like this with the holidays almost on us.
I hope you`re feeling well Sue?
Joy

[snelsen]

#1183461

Agree, Joy.
I had Graves’ when I was 22. It was VERY difficult. Equally difficult to have TED in my 70’s.
Shirley

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