Dear all - I've been around for a while but I'm a reader rather than a poster (sorry). I was diagnosed with Folloicular Thyroid Cancer 3 years ago and had a TT and RAI.
Prior to this I had felt unwell for many years following the birth of my son but in the UK I was always told my thryoid was normal. I live in France and the cancer was found almost by mistake on a routine visit to the GP.
I had a TT sept 2010 and I started on T3 only before the RAI. Post RAI I took 225 gm of levo... I felt great on T3 only but my whole world was upside down so it wasn't any kind of scientific test. I felt very hyper on 225 gms and my bloods reflected this so they have been slowly reducing the dose.
I now take 150gm every day except on a sunday when I take 75gm... and I feel like my health has been a slow slide for 18 month as my dose gets lower and lower.
My endo only sees the suppressed TSH and says my hypo-symptoms are actually hyper-symptoms and he reduces my dose each time I see him.
After my last visit I took things into my own hands and upped my dose during the summer to 162gm and only reduced it back 4 weeks ago for my blood test... my T3 is low and I do wonder if I had stayed on the 150/75 combo all summer maybe it would have dropped out of range?
I am so terrified that when I go next week he will lower the dose again... I feel like I'm living half a life. Tiredness and weight gain are my worst enemies but dry skin, memory loss, sinus problems, walking in treacle, sleep problems, aches and pains are also present, swollen hands and ankles, reflux... what can I do?
Here are some blood results to give you a flavour of my decline... I feel like my TSH is out of sync with my T3/T4... regardless of the suppression I still feel totally pants and hypo? Is there anyway I can convince him? I sometimes feel like this is all in my head and even typing this brings me to the verge of tears... any help would be very welcome
My ranges are :
TSH - 0.27 - 4.2
T4 - 12 – 22
T3 - 3.1 - 6.8
Aug-10 (pre op) - TSH 4.65 - T4 - 11.2 - T3 4.9
Oct-10 (225 gm) TSH 0.01 - T4 32.4 T3 - 5.5
Apr-11 (175 gm) TSH 0.005 - T4 19.9 - T3 5.1
Oct-11 (162.5) TSH 0.01 - T4 22.8 - T3 4.5
Dec-12 (150) TSH 0.01 - T4 19.1 - T3 4.1
Nov-12 (150/75) TSH 0.02 - T3 3.5 (T4 not asked for)