Levothyroxine

Heya tommiebabe, 

Sorry to hear you're suffering a bit at the moment. 

Do you know what tests it is your consultant has done? Is it just your thyroid tests, so TSH, T4, and TG? 

Has anyone tested your Vitamin D, Vitamin B12, folate levels, or looked into silent acid reflux at all?

Lass

Xx

Hi Lass, thank you for replying so quickly.  I've only had My T4 tested and the consultant did want to check my TSH so I had another blood test but he doesn't want to see me for 6 months!!. My GP noticed my levels were high and reduced my levo to 125 mg and I did start to feel better but the consultant surgeon was livid with my GP and told me to go back to 150mg as I need the levo to be high to keep the cancer cells from regrowing!!!!  But my quality of life at the moment is rubbish!!!!  I will look into having blood tests done for B12... Vitamin D and folate levels. And I will ask about silent acid reflux. Thank you Lass xxxxx

Hi tommiebabe.

It sounds like your TSH was where it should be for cancer supression ...typically the lower end of 0.1 - 0.5, which is why the consultant did not want to change it. By lowering your LT, this can increase your TSH and possibly cause cancer cells to grow again. 

I'm currently on 150mg of LT to supress the TSH. I find it hard to sleep and my skin is really sensitive. I will be getting reviewed in dec again.

Im not sure if your consultant has tested your thyrogloblin. This is a protein that cancer cells produce and is a useful marker for the presence of cancer cells in the body. Along with ultrasounds and PET scans, oncologists typically evaluate all these things before deciding that you are of lower risk for regrowth. They may then reduce the LT to reduce the symptoms of being hyperthyroid (trouble sleeping, itchy sensitive skin, anxiety, etc) but there are other things lass has already mentioned that may be factors as well.

But dont settle and suffer if your unhappy. Keep asking questions of your doctors.

Hopefully things will get better for you. 

Mark

Hi there .

I'm currently on 150 mg of levo increased from 125 mg last march ,to be reviewed in 6 months time depending on bloods. I have always been lucky where it came to sleeping at night but since my completion and obviously taking levo I do tend to wake up regularly in the night and if I wake up say 5 ish in the morning that's it I won't get back to sleep at all. My weight has remained the same but I have always been portly. One thing though , I am constantly hungry and eat like a horse. I'm not the best to ask for info on these matters but as some great people have pointed out to me on this forum it does take time for the consultants /oncologists to get our doses/ bloods right. So hang in there. For your skin issues may I recommend a aloe Vera based cream? Last holiday abroad in the canaries the lady behind the till at a health shop swore by it after I showed her my post op scar. Not healed fully yet but the cream has stopped the irritation. All the best onwards and upwards xx