[joy123]

#1060555

Hi all
I had RAI 2 months ago now and its been a roller coaster ride, which I expect many of you have had yourselves.
So after about 3 weeks post rai I began to go hypo and was given 25 mcg levothyroxine. A few days after that my GP raised it to 50mcg. Then a week or so after that my endo team had looked at my blood results and raised it to 75 mcg- which is where I`m at now.
Anyway for a few snatch moments I felt normal, but it was only snatches during the 1st few days.
Now yesterday and today I`ve crashed down to really bad hypo. The team did say that I probably need to raise my dose some more- is this too early to do so?
I`m not due a blood test until 18th Dec.
Also is it normal to crash like this, I`ve got a myriad of symptoms, joint pain, muscle pain, constipation, headache and so cold.
thanks in advance
Joy

[flora]

#1183292

Hi Joy,
I’m sorry that you are feeling so bad right now – and who needs it right before the holidays?! I’m on the ATD rollercoaster myself, but as my levels move around from blood draw to blood draw, I experience those same aches and pains all over, as you – muscles and joints from head to toes! Once our levels settle, I think these symptoms will settle, too. I know you’ll be hearing from forum friends who have had RAI, and can share their experiences through the post-RAI process with you, but I just wanted to let you know that I know the curves that Graves can toss our way, and that I hope you’ll be feeling better soon,
flora

[Kimberly]

#1183290

Hello – Hopefully, others who have had RAI will chime in here. In the U.S., I believe it’s common to start with a larger dose for the initial dose of replacement hormone. Then the standard protocol is to wait several weeks to do another set of labs, as it takes time for the replacement hormone to build up in the body.

It looks like your team is using the approach of starting with a smaller dose and working up slowly. If they are telling you to increase — and your own symptoms confirm that you are becoming more hypo — I would definitely follow their instructions. You don’t want to slide further into hypo by waiting another couple of weeks.

Hope you can get some relief soon!

[joy123]

#1183293

Thanks Kimberly and flora for your replies.

flora- I had the same when I was over medicated with carbimazole before RAI. I feel for you with your levels moving around, this makes you feel awful. Are you thinking of having RAI or managing the graves with meds? I jumped at the chance to have RAI as my levels were all over the place and I felt so ill with it.
I hope you improve really soon, because yes it`s crazy with the holiday season coming up……so much to do, yet no energy to do it.

Kimberly- I think the U.S way of starting on higher levothyroxine is better. With the method of slowly raising our dose over here, seems to leave us suffering longer than needed.
I misunderstood my endo nurse. I found out yesterday when she rang back that they want me to wait a bit longer before I raise my dose. I`m having bloods done on the 18th Dec, so hopefully if I need to, I can raise the dose before the holiday season shuts everywhere down.
(hugs)
Joy

[snelsen]

#1183294

Joy.
All this abnormal stuff you have mentioned, IS normal, for the stage you are in.
It does take a few weeks to change doses, to have how you feel and your labs represent “where you are” Generally, after getting a big established, it is best and optimal to have thyroid labs at least 8 weeks after a dose change. It seems like 8 years.

I hope by now, just a few days later, you are feeling a bit better.
Shirley

[joy123]

#1183295

Thanks for your reply Shirley,
and for reassuring me it`s normal.
Although I know a few people who are hypothyroid, I don`t personally know anyone who`s gone hypo after RAI.
I should imagine ours is a different journey in that we were hyper first and our bodies have gone through the ups and downs..and the shock of it?
I`m lucky in being retired and able to sit down whenever I like and my thoughts go out to others who`re not able to do this.

Lol, I can see you`ve been there because yes, it does feel like 8 years, waiting to increase my dose again.
I`m counting the days …..10 left until my next blood test

Yes thank you, today has been a bit better.
Hope you`re well or as best as can be during your journey.
(Joy)

[flora]

#1183296

Hi Joy,
You had asked if I would consider RAI, or continue on with ATD’s – Just back from seeing Doctor today to talk over my labs from 11/25 (TSH was 3.67), and where to go next. Looking through my lab history, I seemed to feel best in the mid 3’s and low 4’s, although not without some joint/muscle complaints all the same. Most everything else has normalized: BP, appetite, less anxiety and tremors, “digestive matters” sorted out, sleeping better, energy and stamina SLOWLY coming back, and I can catch glimpses of my old “happy” now, that I hadn’t seen in a while (although my journey has been made even harder I think, these past two years, with the stress of family illness and loss). Doctor and I discussed a couple of options for me – first, to continue on with ATD longterm, as long as Graves is controlled. This is what is usually done here, when patients respond well to ATD, and can stay in ranges. I have not had any side effects with hives, WBC or liver problems (these last two are checked yearly) – only these joint/muscle aches, and these are not debilating, or even noticeable to other people. I inquired about attempting remission, by tapering off the ATD’s, but apparently this isn’t tried here – or at least in his practice – because of the possibility of going hyper again. Another option, if the joint/muscle aches (which are known side effects of Tapazole) became too much of a drag, would be of course do RAI and go on Synthroid. So, for right now, I’ll see if my levels will finally settle, maybe allowing for some faster healing to happen, and see where things stand come February, when it will be time for my next blood draw, and doctor visit. Hoping my 25mg per week of Tapazole – 5mg/day, except Tuesdays and Saturdays – will really be my Goldilocks dose at last! All the very best to you, Joy,
– flora

[JEH]

#1183297

I used ATD for 7 years, beginning in 1998. When a new doc and I decided to stop the ATD in 2005 we actually stopped everything, including thyroid supplementation. My TSH stayed within range and heart rate and bp stayed where they should be. There were still some low-level symptoms but nothing I couldn’t manage. At the urging of my spouse I returned to my original doc last summer. He determined that my T4 was too low and I have been on T4 supplementation since that time. It is now where he wants it to be so I imagine I will continue with the T4 indefinitely. Clearly I didn’t revert back to hyper when I went off ATD. I was actually hypo when I returned to the doc this past summer after being off ATD for 8 years. This stuff is really hard to compare with others. I think the docs even have a tough time understanding it all which is why they are such by-the-numbers guys. I have found this forum’s greatest benefit is to talk among ourselves about what’s happening to us. The healthy folks in our lives can’t relate. I so value all of you who post here.

Jane

[JEH]

#1183298

I used ATD for 7 years, beginning in 1998. When a new doc and I decided to stop the ATD in 2005 we actually stopped everything, including thyroid supplementation. My TSH stayed within range and heart rate and bp stayed where they should be. There were still some low-level symptoms but nothing I couldn’t manage. At the urging of my spouse I returned to my original doc last summer. He determined that my T4 was too low and I have been on T4 supplementation since that time. It is now where he wants it to be so I imagine I will continue with the T4 indefinitely. Clearly I didn’t revert back to hyper when I went off ATD. I was actually hypo when I returned to the doc this past summer after being off ATD for 8 years. This stuff is really hard to compare with others. I think the docs even have a tough time understanding it all which is why they are such by-the-numbers guys. I have found this forum’s greatest benefit is to talk among ourselves about what’s happening to us. The healthy folks in our lives can’t relate. I so value all of you who post here.

Jane

[flora]

#1183299

Thanks for posting about your good experience with going off ATD’s, Jane … something to think about over the winter, and to revisit with my doctor again. He has overall been willing to consider my views, and to collaborate with me, as the journey continues ….
All the best,
flora

[joy123]

#1183300

Hi flora
That all sounds like very good news, except of course the muscle and joint aches.
We take Carbimazole over here, but I imagine they`re the same as Tapazole and they give muscle and joint pains too as a side effect. But weighing up your return to normality with your other symptoms I can see why you`d rather keep on them as opposed to RAI.
Another method used over here is called block and replace. I`m not sure if this used in U.S or Canada but I sometimes wonder if I ought to have asked for this first before going for the RAI. They give Carbimazole to lower the thyroid, then add Levothyroxine to keep everything in a normal place. I had Carbimazole which was `supposed` to be slowly lowered to get me into good levels but my nurse insisted on over medicating me, leaving me under active all summer. With hindsight I`d have lowered them myself but we tend to think the medical people know best;)
I`m so sorry to hear you`ve had family illness and loss, this certainly won`t have helped your recovery and I hope you`re bearing up with it.
I caved in and couldn`t wait for my next blood test and phoned my doctor today. I was taking our dog for short walks 4 weeks ago versus debilitating tiredness right now…and the muscle and joint pains.
He raised my Levothyroxine to 100mcg from 75 mcg. Good ol` doc:)
So hopefully things will begin to improve again over here- meanwhile my husband is the official dogwalker/ househusband/cook and thank Goodness for online shopping as Christmas is coming via the postman this year.
Keep well
(Joy)

[joy123]

#1183301

Hi JEH
This is interesting in that you went hypo after some time after stopping ATD. I imagine there must be all sorts of scenarios regarding our thyroid problems. Where I live we sometimes get the duty doctor instead of our own, especially if we need to see someone urgently.
I have yet to find any of them agreeing on my course of treatment post RAI. I do see an endo but this is 3 monthly, her nurse phones me every 6 weeks to discuss my meds, and the nurse has different ideas too.
As you can imagine this isn`t helpful to me, which is why I value this and a UK site so much.
When I eventually got to see my own GP he didn`t know I`d had RAI? He thought I was still being treated with ATD`s. And then to top it all the doctors get annoyed if I mention I`ve gotten help online:/
(Joy)

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