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Hello – I’ve been reading your posts for a while and decided it was time to get involved:). My son was diagnosed with Graves the day before his 16th birthday (October 2013). He had felt “crappy” for about a year -weakness, heart racing, anxiety was thru the roof – was put on fluoxitine in Aug 2013 after many attempts to treat anxiety naturally. Has been diagnosed with adrenal fatigue by naturopath (very low cortisol throughout the day – saliva test ) Very low tolerance for any stress/ pressure. Endo diagnosed Graves – TSH <.01 FT4 3.8 - put him on 20mg Meth. He explained he'll check every 6 wks until in range then maintenance dose. It seemed so simple - Unfortunately Not:(. He has yet to feel good - 2nd test in early Dec. TSH still <.01 FT4 1.1 - seemed to be heading in the right direction - lowered Meth to 15 mg and added 25 mg atenolol - still having tachycardia & high BP trembling hands. Started feeling a little better for couple of weeks - then AWFUL again - exhausted - seemed to still have hyper symptoms - anxiety & tremble - but lab work 2 wks ago showed. TSH 7.75 and FT4 .8 - endo said now he's hypo - reduced meth to 10 mg daily and stop atenolol . He still feels awful. I would love to hear your comments / thoughts - is this at typical pattern? Could the very high TSH 7.75 cause hyper symptoms as well as hypo? Should we be checking FT3 & antibodies? I'm desperate to help my guy feel better and get back to being a teenager - he's pretty much isolated himself. I look forward to your responses!
Hello and welcome – I’m sorry to hear about your son’s diagnosis, but I’m glad that you found us. We are a group of patients here, so we aren’t allowed to give medical advice, but hopefully, the following general info will be helpful.
The latest medical guidance notes that TSH is not a good benchmark early in the treatment process for making dosing decisions. The reason is that TSH can remain suppressed for quite some time in Graves’ patients; therefore Free T4 and T3 are much better benchmarks for monitoring. You can find this guidance in the “Treatment Options” thread in the announcements section of the forum.
Normally, one would feel hypO symptoms (fatigue, constipation, low pulse, cold intolerance, etc.) with a TSH that is too high. However, it sounds like your son has had some significant swings within a short period of time. Hopefully, he will see some relief once levels are stabilized. If your son continues to feel poorly, don’t be afraid to be the “squeaky wheel” and call the doctor’s office to ask for a new set of labs.
The antibody test is primarily used for initial diagnosis of Graves’ and then later to determine when it’s safe to withdraw the anti-thyroid drugs. It’s not a test that is done routinely with TSH, T3, and T4.
Also, the second post in the following thread has a couple of links (one to a Facebook group and one to some videos on YouTube) that will hopefully be of interest:
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://gdatf.org/forum/topic/43625/
Wishing you and your son all the best!
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