Has anyone felt normal after RAI Treatment?

[LoveHopeandGD]

I recently had RAI treatment (6/12/14) and I feel great! My Endo Dr. Seems to be confused...latest labs (6/25/14)
T3 77 Total (76-181)
T4 4.6 Total (4.5-12.0)
TSH. 1.46 (0.4-4.5)
I usually have the Free lab work but my eye specialist order the labs to help watch out for TED.
What should I expect next...since my Drs. Are scratching there heads????

[LoveHopeandGD]

Looks like the lab took my free test too, just got them today...
TSH 1.43. (.4-4.5)
FT4 0.8  (0.8-1.8)
FT3 2.4  (2.3-4.2)
TSI 119% baseline

I WAS TESTED 13 DAYS AFTER RAI

[LoveHopeandGD]

See above

[LoveHopeandGD]

She had a nurse call me back a few minutes ago, to say I can have blood work done next week and base on those results for meds.  I asked the nurse to document my muscle spasms even tho she didn't seem to care!! She also said for me to stop taking the Atenolol...which she should have told me that on Friday when she called to tell me how my levels are in range and to call her about when I start to gain weight or get cold.  It will still take some time to find a doctor :-(

[Barb135]

Did your doctor call back yet?  Did she agree to medication or did she deny that they symptoms were thyroid related?

Have you considered the possibility that you might have to find a different doctor?

[LoveHopeandGD]

Hey...you would not believe this but I am in the bed with muscle spasms for the first time in my life!! Guessing that the symptoms have started. Still waiting for my Drs to call back.

[LoveHopeandGD]

I REALLY WISH I COULD REACH THROUGH THIS COMPUTER AND HUG YOU!! SERIOUSLY!!!  YOU HAVE BEEN THE MOST HELPFUL SINCE THIS ROCK HAS LANDED ON ME...I CANT THANK YOU ENOUGH!!!!!!!!


I am calling my Endo...Now!!  My first question will be...Don't we need Free T4 and Free T3 and not Totals...And that i really think i should go on meds now, instead of later.  I am also calling my Eye Dr. he may be able to help get me on my meds since my endo dont even want me to came in for 4-6 week after RAI but he pushed the issue of having me come in earlier.  any thing else??

[Barb135]

I don't have a lot of confidence in your endo.  There's no way to predict how long it will take for the RAI to destroy your thyroid and it's pretty obvious from the T4 and T3 results that it's already well on its way.  

TSH is a pituitary hormone and should never be used as the sole means for determining a need for medication or a dosage.  Free T3 and Free T4, along with symptoms will tell you when you need medication.  Weight gain and being cold are not the only symptoms of hypothyroidism (I wish they were!!).  Others you might experience are fatigue, hair loss, constipation, muscle/joint ache/pain, puffiness in the face, feet, legs, menstrual issues, pale dry skin, brittle fingernails

It's true that you can have eye trouble when hypo, which is another reason you should be on replacement hormones; however, eye issues are less likely when hypo than hyper.

As to whether or not you should be on hormones... with levels like yours, I'm very surprised that you don't have hypo symptoms, but if the only things you're looking for are weight gain and feeling cold, you may never have them.

Over the next few weeks, I would expect you to start feeling very bad, without thyroid hormones.  Your thyroid can no longer make them and you aren't on medication... you can't go indefinitely without them.  The thyroid controls metabolism, heart rate, body temperature, etc.  Those systems will begin to malfunction soon.

You should get the Free T3 and Free T4 tests done soon and insist that your doctor start you on replacement hormones, before you start getting symptoms.  It's easier to control them if they don't get the upper hand to start with.  If you start with a small dosage and work up as you need to.  I can't stress enough about not using TSH alone to determine your dosage; FT3 and FT4 should be ordered every time TSH is.  

Rule of thumb is for FT4 to be about mid range and FT3 to be upper  half to upper third of its range in order for most of us to feel well.  Many of us whose levels are left in the lower portions of the ranges remain ill.  

[LoveHopeandGD]

Hi Barb, I hope that you are doing well.  I agree about the Total testing.  Yes I have Graves.  I  was told by my Endo, that I would be Hyper for a few weeks then slowly changing to Hypo and the process could take months.  My levels are low but they are in range which they havent been in months!
My Endo is scratching her head because I am not Hyper and its only 2 weeks after RAI... i am guessing.  Now you say "if i  haven't started taking the hormones yet...Do you think i should be?  How would i know or my Endo??  And if we should not be using the TSH levels as a guide, What should we use as a guide.  All i know is to call the Dr. if i start gaining weight quickly or getting cold...Should i weigh myself everyday and never use the AC (seriously) I quit smoking cigs. when i found out i had Graves so a little weight would be natural.  What can i expect in the next few weeks? You comment about my chances of getting TED, makes me feel so so much better!!  My Eye Specialist seems to believe going into Hypo really fast without Meds will harm my eyes too.  

[Barb135]

Both your T3 and T4 are extremely low in the ranges, indicating that FT levels would be equally so.  It really makes no sense to have tested the Totals, since they are obsolete for any purpose.  Am I recalling correctly that you have Graves Disease?  Or was it a hyper phase of Hashimoto's?  Once you are no longer hyper, the chances of getting TED are slim to none.

I don't understand why your doctors are scratching their heads? Because you feel good?  While it's unusual to feel well with labs that low, I'd think they'd be happy about it, for the time being and be ready with the prescription pad for when you need the replacement hormones, if you haven't already started them.

Since RAI, basically, "kills" your thyroid, so it can't make hormones, you will need to take replacement hormones.  This can be done via synthetic T4, often with the addition of synthetic T3 or with desiccated pig thyroid, such as Armour, ERFA, NatureThroid, etc.  That's a choice you and your doctor will make.  Typically, dosages start small and work up, as needed to alleviate symptoms.  Don't let your doctor allow TSH to dictate you dosage, as that will end up keeping you ill.