I haven't posted on here before but I am now at a point where I could really do with some advice. Sorry for the very long post!
I was diagnosed with Auto-immune Hypothyroidism in 2004, when I was 25 years old. Since then I have been on around 100 mcg Levothyroxine/ day. Other than when I was first diagnosed, my TSH has since been in the normal range. However, the last two years it has been suppressed at 0.02 but with a lowish T4 (12.0) and normal T3 (4.0). My GP looked at the TSH and said I was clearly on too much Thyroxine and should have my dose reduced. Despite me pointing out the fact that T4 and T3 were at the lower end and I was having symptoms of being hypo; weight gain, huge amount of hairloss, extremely cold all the time and depression. When I asked my GP why is the TSH so suppressed and T4 and T3 normal, she replied “I don't actually know”. Not very helpful.
I should also mention I was diagnosed with Paliandromic Rheumathoid Arthiritis in 2015. When I mentioned my thyroid issues to my rheumatologist she immediately referred me to an Endocrinologist.
The Endo I saw was OK. I asked if he thought the thyroid levels could indicate a problem with my Pituitary Gland and he said “Maybe, we'll see what the test results show up and possibly do further test if it points to that”. He arranged for me to have several tests done, results below. He wrote me a letter informing me that some of those test have come back Borderline for Cortisol and TSH, but not what they are borderline for!! Only that my GP should now test me yearly for my Cortisol levels and sort out my meds for my thyroid. I have no other face-to-face appointment with him, but I have so many questions which I feel I need to have answered. Having read the test results I am even more confused. From my understanding I have:
Adrenal insufficiency, Secondary Thyroid Insufficiency (which would indicate a problem with the Pititary Gland), Tested Positive for TSH-Receptor Antibodies (which are associated with Graves' Disease (even though I have been diagnosed with Auto-immune HYPOthyrodism), Thyroid Peroxidse AB Positive.
I would be incredibly grateful I anyone could give some advice of what you think I should do next. My GP surgery called yesterday saying they needed to see me to discuss some things from the letter they revived from the consultant. I really hope they aren't going to lower my thyroid meds again since I've only just started feeling better after having increased it from 100mcg to 125mcg/ day for the last 3 months : (
Synacthen Stimulation Test Result:
Cortisol: 0 min – 215
30 min - 428
60 min- 552
Notes from Lab: Inadequate response
ACTH: 9 (10-50 ng/L) = Low
TRH Stimulation Test
TSH: 0 min – 0.04
20 min – 0.17
60 min – 0.13
Notes from Lab: No significant response to TRH. Consistent with secondary thyroid insufficiency.
TSH-RECEPTOR Ab: 0.65 (0.00- 0.40 U/L) = High
Labs notes: Anti-TSH Receptor Antibodies are associated with Graves' Disease.
Thyroid Peroxidase Ab: 91.4 (0.0 – 5.6 kU/L) = High
Lab notes: TPO result is Positive.
Any thoughts would be very welcome!