[krisbruesehoff]

#1060471

My son was dx with type 1 diabetes in 09 and Graves’ disease in ’10. He had relatively good control while on Methimazole and a brief remission of his Graves’ disease. His thyroid was ablated over a year ago and it has been an extremely tough year for him. Last TSH was 65. He is on 275 Synthroid. He has had a difficult time keeping his blood glucose numbers in control as well. He missed over a third of his classes this past year. We anticipated a few months of adjustment time…but this has gotten really hard watching him not feel himself and constant fatigued or an entire year.
Is this common? Hope or suggestions for getting things regulated?
Does anyone here have both t1d and thyroid issues and if so any tips on managing both?
Most of all, what can I do to support him? Id love to hear more about what he’s dealing with….he says he just feels tired and like a very old man all the time. It breaks my heart.

[Kimberly]

#1182826

Hello and welcome! I’m so sorry that your family is going through this.

Thyroid issues and diabetes are often connected, so getting both issues regulated can be challenging; this is a nice piece with an interview from an endocrinologist at the Cleveland Clinic:

(Note on links: if you click directly on the following links, 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://health.usnews.com/health-news/news/articles/2013/03/15/people-with-type-1-diabetes-at-risk-of-thyroid-disease

One thought on the high TSH #’s would be just to double-check that your son is being consistent with dosing (taking every day, waiting 30-60 minutes to eat breakfast, and avoiding soy/iron/calcium supplements for 4 hours after taking meds). If he is already doing all of that, another issue to look at would be whether something is affecting his body’s absorption of the meds. For example, in patients with undiagnosed Celiac disease (also an autoimmune disease), the levothyroixine might not be fully absorbed. This is a good piece from the American Thyroid Association:

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-5-issue-6/vol-5-issue-6-p-3-4/

In terms of patient stories, you might use the “Search Posts” feature here (you have to be logged in to do so) to search for “kids”, “teens”, “adolescents”, “children”, etc.. Most of our posters here are adults, but we occasionally have parents or teens jump in the conversation.

Also, if you are on Facebook, there is a group there for moms: https://www.facebook.com/groups/265484340175004/ It is *not* monitored or administered by the GDATF, but is an informal group of moms of Graves’ kids. It’s a closed group, but you can request to join, and the administrators will message you with a questionnaire to confirm that you are a Graves’ mom. (They do this to keep spammers away).

Wishing you and your family all the best!

[Raspberry]

#1182827

I’m sorry your son is having such a hard time. TSH of 65 sounds rough! Perhaps a second opinion is in order? There are large variations in how different doctors approach dosing.

[krisbruesehoff]

#1182828

Thanks Kimberly for pointing me to some good sources. Will check it all out.

The thing is I truly love our endo and she is being quite aggressive with testing and adjusting doses…she is awesome but I think quite surprised that his TSH is still not in range. 65 is way better than 130 so I guess at least we are headed in the right direction!
She says it is quite unusual for some one of his weight to need such a high Synthroid dose, so I think that might be why it has taken so long to get him in range.

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