Both my doctor and I are puzzled, and I'm wondering if you can help shed any light on what may be going on? Apologies for the length of the following, I am trying to be as thorough as possible.
For at least 10-12 years, my TSH has been gradually climbing and last month was 8.97 mU/L (Australian reference range 0.40-4.00). My free T4 and free T3 are normal and stable over time. I had a thyroid ultrasound twice, 5 years apart and, while there were a few nodules, there was nothing major to find, and there was no change at all in its appearance in 5 years, despite my TSH going up over that time. I've had elevated ANA (nucleolar pattern) for 20 years, although in the past 3 years the level has begun to fall. All my ENAs are negative, and CRP is negative.
I sleep well and eat healthy, have a happy marriage and a stimulating and rewarding job, yet I'm tired a lot, have muscle and joint aches and pains, but no arthritis. I've been getting mild Raynaud's in my fingers for about 20 years, but this has improved slightly in recent years. Apart from the Raynaud's, I don't have intolerance to cold (a classic hypOthyroid symptom), but do have a bit of trouble tolerating hot weather (a classic hypERthyroid symptom).
Much of the above would suggest autoimmune hypothyroidism (Hashimoto's), however I test negative for Thyroglobulin Antibodies and Peroxidase Antibodies. In addition, my haematology, blood chemistry, blood sugar, iron studies and total cholesterol are normal (although with a slightly elevated LDL, which I'm working on lowering via diet). Vitamin D was low 12 months ago, but is normal now (after taking D3 tablets). I'm negative for both Lyme disease and Coeliac disease (antibodies and genetic testing). Several years ago I tested positive for IgG antibodies to wheat, milk and egg proteins and I have all but eliminated these from my diet. I add no sugar or honey to food or drink and eat mainly fresh meat, fish, vegetables, fruit, nuts, and gluten free grains. I don't smoke and rarely drink.
Two or three years ago, the doctor tried me on a low dose of thyroxin (I forget what the dose was, but I took 1/2 the smallest tablet available). If I had Hashimoto's we'd expect me to feel better and the TSH levels to fall. After a couple of days I did feel a tiny bit more energy but from the 3rd day I felt much worse, as I couldn't sleep for 48 hours and I had tachycardia and palpitations the whole time. I tried taking the 1/2 dose every other day, but I still had difficulty sleeping and my heart continued to race. So that little experiment was terminated poste haste!
My GP today suggested a pituitary MRI, I guess to check for adenoma, as this might explain an excessive production of the TSH. But this is expensive, so before going that road, she's ordered some more pathology tests: prolactin, ACTH, morning cortisol, PTH (parathyroid hormone), urinary specific gravity, and magnesium. I guess if any of these come back abnormal, we'll have a better sense of what to do next. But if they're all normal, we're both going to be a bit stumped! I am menopausal, but my hormones, including FSH, are normal for this stage of life too.
What are your thoughts so far and what else do you think we should be looking at? Could there be resistance to TSH, if so why? Or something going on in the hypothalamus, e.g., too much TRH causing overstimulation of TSH? Why I'm wondering about the hypothalamus is because I am a carrier of the most common mutation for Cystic Fibrosis, the delta-F508 gene, and I know from my reading that recent studies have found problems in the hypothalamus in CF patients. I know carriers are supposed to be asymptomatic, but knowledge about this and other conditions is constantly being updated as further studies are carried out and discoveries made.
thank you,
Margdav
Would you post recent FT3 and FT4 levels? Please include reference ranges as they vary lab to lab and country to country, so they have to come from your own lab report.
I am asymptomatic (on meds because I do have Hashi's), but you sound symptomatic.