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I’m very new here to this forum but not new to Grave’s and have been a “lurker”. I’m in a weird dilemma. I had RAI back in September of 2014. My numbers have been steadily decreasing (YAY). My last blood check was good in my opinion – T4 and T3 all acceptable levels although they are still slowly but steadily decreasing. I am NOT taking any medications at this time. I never went truly HYPO, although I feel sluggish as heck. Last week my endo informed me that the RAI didn’t work because my TSH is still < .1 and that he recommends surgery - I can't have RAI again because of my eyes. He explained to me (as if I was an idiot) that TSH is the only indicator and that my levels are still non existent. I am seeing that TSH takes a long time to come back, but he says after 7 months, it should be where it will be staying. He also told me that medication is not an option. He wants surgery. I have avoided surgery because the track record of dr's in my area is horrible. The only option I see is to get a 2nd opinion by going back thru my family practitioner. Personally, I believe that the RAI worked as intended and that I was (so far) one of the few that did not go Hypo immediately. I believe he is trying to "milk the system" for money and that it is an unnecessary surgery at this point (until my T3/T4 numbers confirm what he is telling me)
My question is two-fold.
1> How long is “normal” for TSH to come back up? and
2> has anyone else tried medication after a diagnosis of RAI not working?Here’s my blood test results with normals in ()
TSH – <0.1 (2-4.9)
T4 – 7.3 (4-11)
T3 Uptake – 30.4 (25-38)
T7 – 2.2 ((1-4.2)Hello – Doctors do like to see the TSH come up, as continually suppressed TSH does come with an increased risk of a-fib and also bone loss. However, if it was me, and my T3/T4 were normal, I wasn’t having hyper symptoms, and I didn’t have any cardiac risk factors, I would *definitely* seek a second opinion before having surgery! The “Looking for a Doctor?” thread in the announcements section of the forum has some links where you can search by city/state/zip.
In particular, the fact that you do not have experienced thyroid surgeons in your area is a concern. If you do decide to pursue surgery, travelling to another city where they have that specific medical expertise would be an option. You definitely want a surgeon who does a LOT of these procedures and who has a good track record of minimal complications.
Having normal T3/T4 with suppressed TSH is called subclinical hyperthyroidism. For a new diagnosis of subclinical hyperthyroidism, doctors will usually “watch and wait” to see if T4/T3 start getting too high. However, for patients who are having symptoms or are at risk for heart issues or osteoporosis, treatment is recommended.
Take care!
Thanks Kimberly. I am def going for a 2nd opinion. I will meet with the endo again before I do this just to make sure my numbers are staying steady. Thanks for the prompt reply!!
Had an appointment with my endo yesterday and got some answers finally. I’m not sure it’s the correct answers, but I have answers nonetheless! The reason for not wanting to leave me with no TSH is because if your pituitary gland (TSH producer) isn’t telling your thyroid to produce the T3 and T4 – then something else in my body is telling it to – namely the TSI antibody (the Grave’s disease in my system). The way he explained it – the thyroid doesn’t produce the T3/4 on it’s own without being told to. So, if my TSH is 0 in a normal body the T3 and T4 should actually also be 0. My numbers are “normal” which tells him that the Grave’s is back active in my system telling what’s left of my thyroid to produce hormones. The reason it is so dangerous is because if you were to need to have another test that requires iodine dye, the iodine can send you into a thyroid storm. I have put off the RAI again until November, but I am back taking methimazole 5mg a day to see if my TSH comes up. He says even though I’m not “toxic” at this point, that he still believes that the RAI didn’t work the first time and also told me he wouldn’t be “fooling around” with the next dose of RAI – it would be 20 mc dose.
I had a total thyroidectomy because I have the eye disease. In the hands of an experienced surgeon, the surgery is quick, easy and has a very short recovery time as well as a lower risk for thyroid ophthalmopathy initiation or progression. My TSH was normal at the very first blood test a couple of weeks post surgery. It had been totally suppressed on methimazole. I adjust my synthroid totally by TSH because I find the free T4 to not be as sensitive. Without a readable TSH, I would have trouble finding the optimal dose. You mentioned a T4. Most doctors use the free T4. I have never had a plain T3 or T4. Hope this helps.
@ccorhn – Thanks for the update! I thought that from your previous post, your doc had wanted you to avoid RAI due to eye issues. (?) For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options. For milder involvement, RAI is considered an acceptable therapy, but consideration of the use of steroids in conjunction with treatment is recommended. (Although steroids of course come with their own set of risks).
Since your T3/T4 were normal at the last reading, definitely keep tabs on how you are feeling and call your doc for an appointment ASAP if you start feeling hypo symptoms come on. Every patient is different, but symptoms of hypOthyroidism can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse. Being hypO as well as hypER can increase the risk of eye complications, so you definitely want to be careful to keep levels stable.
Take care – and keep us posted!
Yes, Kimberly he did want to not do RAI, but since he wouldn’t treat me with meds, I saw it as the only option. He had agreed finally under an ophthalmologist guidance to the RAI, since I refused surgery – period. As of noon today I had good news… I now have TSH showing up in my blood work!!! So exciting! He now has to eat his words on making my life so horrible the past 2 days – fully expecting to go thru the RAI again. I have a normal TSH amount in my blood test (.3) from 2 days ago. He actually called to apologize. So… I am in remission at the present and still probably will go hypo – so we will watch numbers closely for the next couple months to see about the hypo. The answer to the question I initially posted is Yes, the TSH can still come up even almost a year after RAI treatment. This is the first good news I’ve had in 2 years!! Thanks for all your support through the bad times!!
Hi ccorhn –
Although I’m on a different pathway on this journey of ours (the ATD trail), I just have to tell you how happy I am for your news! All the best for smooth sailing, and thanks for sharing the joy!
– flora -
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