low t, hypothyroid, pituitary issue??

[hankins2010]

hello my husban is a 26yr old male with a good health history until the age of about 18 when he was diagnosed with lymes disease, he was treated by infectious disease and has followed up when nessacary. in july of 2009 he had blood work drawn for fatigue his tsh was 21 it went untreated, we were never notified of the labs. a few months later when his symptoms where getting worse, so in late november 2009 they drew a labs again tsh was 390 he was treated with levrothoxine and cytomel. He alos had total and free testosterone drawn they were low not low enough to be concerned and since his tsh was no high they decided to wait. we concieve our first child, a daughter in feb2010, no complications healthy live birth. his tsh was slowly coming down but not fast enough over the past 2yrs they having been playing with his dosage it was never in the normal range. he his testosterone drawn in april of 2011 number were low enough that he needed to be treated, our endo advised us to begine treatment with hcg since we planned on having more children, he went throught a around of injections 3times a week for 6weeks i believe. testosterone was re drawn and looked good he felt the best he had felt in a long time he had energy his snoring stopped and his tsh was almost in the mormal limits, it was the best it had been during his treatment. after being off the drug for a short while he started to decline again so they started another round and unfortunatley he felt way worse then ever this was in august 2011. he was then refered to johns hopkins, they did blood work and mri, the mri showed a gray area in his pituitary gland, and we were advised not to treat testosterone until we were done having children. we concieved in jan2012 miscarried in late feb due to blighten ovum. I had 3 ultra sounds the first everything was normal approx 5weeks, 3 weeks plast ovulation they saw normal gestational sac, and yolk sac, next scan did not show the yolk sac and the final scan also did not show the yolk sac, pregnancy ended in d&c. we were able to concieve again in june and so far have had no issues other then a sch which has subsided. the last time he had labs drawn was about a week ago august2012 his tsh is now 400+ im not sure the exact number. and his testosterone was also very low, it wasnt done in the am so it will be repeated. he has almost every test the endo can think of the doc from hopkins is ordering another mri and she said she cannot think of what is casuing his problems she said there is one last test she can order to maybe get some answers and she is going to speak to some collegues other then that we cant seem to get any answers. symptoms are, muscle aches pains twinges, headaches, extreme fatigue, snoring, mild weight gain, bottom of his feet are peeling cracked and split open, slow healing when he gets cut/scraped, hot/cold sensitivity, mood swings, joint pain, back pain. the other testing he has had done has been bilateral knee xrays for pain they showed arthritis, back xray and mri showing a lumber disc compression fracture that was very old and he has no idea how how he did it, thyroid sono normal, testical sono also normal. any advice would be much appriciated thank you!

[hankins2010]

thanks, i will post them as well as reference ranges, yes i do realize how high it is, they didnt want to go that high but now we really dont have much of a choice. it's the highest either endo has perscribed

[goolarra]

I thought I'd get in on this discussion because I have a pituitary issue as well...as you said "not JUST Hashi's" (which I laso have.

I agree with Barb that we have to see FT3 and FT4 (BOTH of which are more important than TSH since they are the actual thyroid hormones) before we can offer much useful advice.  Don't forget to ask for reference range (which varies lab to lab and has to come from your own lab report) along with result.

450 mcg is a HUGE dose...probably one of the highest, if not the highest, I've seen reported on this forum.  

Once you post your results, we can offer more suggestions.

[hankins2010]

he went untreated when it was 21 because honestly we never followed up we were supposed to get a call if something was wrong and never did once things got to a point where he was worse we saw another doc and they found it, yes t3 and t4 have been done im not sure what those numbers where, this time around the primary doc failed to order the t4 and t3(i know one of them are more important then the tsh it self) he will have them done along with another test that the doc from hopkins has ordered he is on levrothoxine 450mcg daily...the highest does our endo has perscribed to anyone ever. he has been on the medication for over 2yrs its not working, the only time he had any relief and his levels almost reached normal when he was on the hcg, but hcg has bad effects for long term use and he can't saty on it...thankyou for your reply...i will post the test results once they are in. he also has been tested for just about every thyroid and pituitary disorder the endos can think of as well as adrenal functions and testicular, our endo almost hit the floor when she saw his results and with his testosterone being as low as it is she couldn't believe we were able to concieve, she said it was impossible given his labs, i kno w testosterone and your sprem production go hand in hand but it dosnt seem to be effecting his pserm production at all, we were able to concieve 3 times. it s more then just hypothyroid both endos agree but can't seem to figure out what it is. autoimmune was expolred but hashimotos was all they could come up with and it's not just that.i fought for a mri of his pituitary we kept being told it was impossible for his labs to be what they are if something was wrong with it, but the results have shown there is a spot there he is having another one to get a better look. what other infor do you need?

[Barb135]

Is TSH the only thing they are testing for thyroid function?  I can't imagine a doctor not treating someone with a TSH of 21, but to let it get to 390?  Someone really fell down on the job here, whether it was the doctor or if your husband didn't take medication as prescribed.  

Is he still on the levo?  Sure hope so, with a TSH of 400+...........  Has anyone done a Free T3 and Free T4 test?  Those are the actual thyroid hormones......

What happened with the pituitary issue?  

If you have Free T3 and Free T4 results, please post them, along with reference ranges, which vary lab to lab and must come from his own report.

Your husband sounds VERY hypo and needs to be on medication. We can't help you with just the information you've given; there are too many missing pieces to the puzzle.