Hi I am on 112mg of Levothyroxine a day. I have (self-diagnosed) Hashimotos and a GP who is a bit of an a**se. I have been ill since 2009. I was initially trialled on 50, then 100mcg of Levo by a very nice GP, the result was almost back to myself. This only lasted for about 6 months as I then moved and had a new GP who refused to entertain I had a thyroid problem and sent me down the route of ME CFS for several years. At this point I had flue ache all the time, and an inability to exert myself. (Would either be really ill for weeks after or actually collapse). My hair fell out and my fingernails came off their beds. I had a lot of fluid retention, felt really low, put on 1.5 stones, and had a scalloped flabby grey tongue. (Nice). This non treatment lasted for serval years until the ME consultant suggested I retrial-ed Levo and 6 months of B12 injections about 5 years ago.
Since then it has been a bit of a fight, remaining on Levo. I feel best when my TSH is suppressed and FT4 over range, but still have annoying persistant symptoms. But I have been doing really well. I got back to working full time, (+2 kids), studying and running 3 times a week. ( with several 10k muddy obstacle runs thrown in for good fun!)
Over the last 8 months I noticed that I was starting to get ankle problems from the running, first it was painful tendons, like tendonitis that wouldn’t heal. Then my muscles in my legs started to feel really really tight and painful. No amount of hot baths, massages, tiger balm etc helped. It got worse and then I realised it wasn’t a dodgy gait thing, my elbows hurt, the muscles in my back and neck were also really tight. To the point where I cut back on the running and now haven’t run for several months. Visted physio who suggested I was slightly hypermobile and it could well be thyroid related…, and my hair started to fall out in handfulls again.
So what with the tight muscles, hurty tendons and hairloss, I also had headaches, weird ‘fizzy’ feeling in my head/mouth, insomnia started to creep back. I thought it was about time I privately tested.
I have finally got my private test results back, and stupidly (doh) managed to muck up my Thyroid results. (I thought I had been so careful, but working back it looks like I left 48 hrs from my last dose rather than 24hrs...) So for info, I expected my TSH to be much lower and my FreeT4 over range. Previous thyroid bloods over time I have listed below just for reference to compare with the ones on the photo. The ones below were generally taken after a 12hr break, the one in the photo a 24 hr break. So somewhere in the middle??
I would be really grateful if you could all have a look and comment away what may be causing the symptoms! I was surprised that my B12 is so low. (I eat really well and GF!) and wondered if this is actually the culprit…
Annoying Symptoms:
•Hairloss
•Really tight muscles and painful tendons
•‘Fizzy’ head feeling
•Headaches (could be tight muscles in neck)
•Started to tire easily, but have trouble sleeping
•Horrible big, flabby greyish, scalloped tongue. (I have had this since I got ill)
•Feeling like death and pins and needles in hands when I wake up in morning…
Previous Thyroid results, just for reference to compare against photo:
on 100mcg Levo:
TSH 0.03 (0.35-5.50)
FT4 31.9 (10.0-23.0)
On 75mcg Levo
TSH 0.43 (0.35-4.67)
FT4 0.96 (0.7-1.8)
FT3 2.00 (1.51-3.71)
On 0mcg Levo
TSH 7.41 (0.35-4.67)
FT4 0.88 (0.7-1.8)
FT3 2.28 (1.51-3.71)
On 0mcg Levo
TSH 5.19 (0.3-3.94)
FT4 19.2 (12.3-20.2)
On 0mcg Levo
TSH 5.07 (0.3-3.94)
FT4 22.7 (12.3-20.2)
On 0mcg Levo
TSH 4.19 (0.3-3.94)
FT4 19.5 (12.3-20.2)
On 0mcg Levo
TSH 4.23 (0.3-3.94)
FT4 21.8 (12.3-20.2)
FT3 4.1 (3.7-6.7)
On 50mcg Levo
TSH 4.10 (0.3-3.94)
FT4 21.7 (12.3-20.2)
On 112.5 mcg Levo
TSH 0.05 (0.3-3.94)
FT4 38.3 (12.3-20.2)
On 112.5mcg Levo
TSH 0.28 (0.3-3.94)
FT4 36.5 (12.3-20.2)