Ideas please

[Nannyjenny]

I had a total thyroidectomy 20 years ago for a massive goitre. I had been taking levothyroxine for 20 years prior to the surgery. The idea being that giving me the meds would stop the goitre growing but it didn't work.

My levels have fluctuated over the years but I have never had any symptoms - until .now.

Earlier this year I had a left hemicoletomy and ileostomy for bowel cancer.

Over the past couple of months I have become thoroughly fatigued and have debilitating pains in my upper arm muscles and my thighs. So much so that I am unable to turn over in bed.

Recent blood tests show that I am hypothyroid (sorry didn't take in the levels as I was so shocked).

What I would like to know is if these symptoms are thyroid related, how long before the increase (gone from 125mcg to150mcg) will start making a difference to the pain and tiredness?

Many thanks

[helvella Administrator]

Very difficult to say. We see some people notice the next day after a similar sort of increase. Others seem to take a few weeks to really notice anything. And anywhere in-between is possible.

Personally, I have often noticed improved sleep as one of the first changes. But this is quite clearly not universal.

You have my understanding regarding turning over in bed. For entirely different reasons, not thyroid, I cannot lie on my left side. I might feel I want to. Sometimes, I'll even actually turn. But it is painful and I have to turn back in seconds.

I urge you to get a printout of your results - or look on your phone app if you have one that provides access to results. Many surgeries will happily print out a sheet just by asking at reception.

[pennyannie]

Hello Nannyjenny and welcome to the forum :

It reads as though your T4 thyroid hormone medication has stopped working as well as it once did ?

Obviously we can say more once we see some blood test results and ranges.

T4 - Levothyroxine is a storage hormone and needs to be converted in the body into T3 which is the active hormone that runs all the body's functions -

from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels -

so suggest you ask for your ferritin, folate, B12 and vitamin D blood tests to be run and we can explain where these need to be once we see some results and ranges -

as just being in the NHS range. somewhere, anywhere, is not optimal.

Without a thyroid you need to maintain as optimal a level of heath and well being as you can -

and you should be dosed and monitored on your Free T3 and Free T4 results and ranges and not a TSH seen in isolation -

which, I' m afraid, seems to be what some people dealing with primary hypothyroidism are being monitored on.

[Nannyjenny in reply to pennyannie]

Many thanks. I will attempt to get a copy of the results. In Wales it isn't so easy! My B12 etc all came back within normal limits. Would this be causing me so much pain and distress? I do feel the cold, can fall asleep anytime, anywhere and the pains are making it difficult for me to function and despite a restricted diet and little appetite, I am not able to lose weight.

When I've asked in the past why I have needed more or less levo all I have been told by GP Oh I don't know. We only medicate according to the level in front of us.

This is the first time in over over 30 years that I have had any symptoms but this year has been a particularly bad one what with the bowel surgery and complications. I feel as if I will never get over this.

[pennyannie in reply to Nannyjenny]

I wonder then if this all stems back to the bowel surgery and complications -

as conversion of T4 into T3 can be down regulated by any physiological stress - physical or emotional, inflammation, depression, dieting and ageing.

For optimal health and good thyroid hormone conversion we need a full, balanced healthy diet full of nutritious food and good fats.

Sounds like your core strength vitamins and minerals may have nose-dived through the ranges and with you being in pain and not eating properly this will all be compounding your health issues.

[Brightness14]

I have no thyroid either and get the same pains in the top of my legs when my FT3 is too low.

The pain sometimes wake me up in the very early mornings but go later. Welcome to the forum.