still no avail….

[Lisalee123456]

hello quick update on where I am nearly two months later- so after more blood tests original tsh levels were 100 the doctors upped my levothyroxine to 175 a day as they refused to even look at absorbtion and first protocol is to up dose…ok fair enough…roll on some weeks and after more bloods my tsh level is now 89.9 so they are very much sticking to the fact that it’s working and everything is going well….. erm no…. I still feel like rubbish I’ve absolutely ballooned I’m now a size 18 plus my feet and hands are swollen my muscles ache I’m constantly getting chest infections, I’m always tired, the littlest thing is exhausting me, worst thing is this is obviously making me feel sad and slightly depressed but because they were so insistent that I was taking the tablet wrong I stopped taking my anti depressants and now feel I can’t go back on them as I feel like maybe coming off them has helped with bringing the levels down- for concept I have no thyroid is was removed due to follicular thyroid cancer- next bloods are due on the 3rd may.

[pennyannie]

Hey there again - I can't believe we are still with this issue - heavens knows how you must be :

It's true some anti depressants can effect thyroid levels - bit I'm do not think this the main issue.

Which ones were you taking - as you do need to come off some very, very, slowly.

I have no words :

[Lisalee123456 in reply to pennyannie]

I was taking sertraline 50mg a day but they was like a dog with a bit and stuck that I must be doing something wrong, so I decided to stop taking them- I can’t seem to get them to listen even when I met with my endocrinologist she was like ah you know it’s a snail pace your look back in 6 months and see how far you’ve come!!! So frustrating but even more so now as because it has come down which is obviously what I want they assume whatever they’ve done has worked!! I’m on antibiotics at the moment due to yet another chest infection- my 3rd in as many months. I just wish to feel normal again!! We’re off out at the weekend and I’m dreading it because I know how exhausting it is going to be, but I’ve got to do it for my son as us mums do- it’s just so frustrating sorry rant over!!!

[pennyannie in reply to Lisalee123456]

You can rant here as often and for as long as you like - I'm lost for what to suggest -

other than the blinking obvious of taking the liquid form of T4 :

[Lisalee123456 in reply to pennyannie]

bless you Thankyou- how are you??

[pennyannie in reply to Lisalee123456]

I'm ok - soldiering on - as we all are - but I now self medicate and much improved.

I try and give back on here where I can as this forum pretty much saved me from going down a very dark hole :

[Lisalee123456 in reply to pennyannie]

that’s brillaint to hear your in a good place! When you say self medicate, do you mean with vitamins etc?? I’ve been looking at herbal alternatives and to be honest can’t make any sense of it.

[pennyannie in reply to Lisalee123456]

I'm sure I've written to you in some depth about all the core strength vitamins and minerals that need to be maintained at optimal levels for optimal thyroid hormone replacement medication to work well - and I supplement said - namely - ferritin, folate, B12 and vitamin D in order to stay well.

I now buy my own thyroid hormone replacement as T4 seemed to stop working for me - and now I take Natural Desiccated Thyroid which is a derived from pig thyroids, dried and ground down into tablets, referred to as grains.

NDT is the original and successfully used treatment for hypothyroidism for over 100 years, and contains all the same known hormones as that of the thyroid gland with a measure of T3 and T4 in each grain -

and on the back of which Big Pharma went about launching their own synthetic T3 and T4 treatment options in the middle of the last century and then went about claiming market share.

Do you know how to find all your previous posts and replies - just press on the Profile icon on this page on my laptop it is top right - maybe elsewhere, like bottom left on a mobile - and there are your posts and everything you have written on this open forum.

If you want to read about any other forum member simply press the icon alongside their name in any reply box.

[Brightness14]

I had my thyroid removed back in 2015 for papillary cancer. Here in France they always remove the whole gland, not half.

Anyway when I left hospital I was given a letter from my professor surgeon, stating that my TSH had always to be suppressed i.e. under 1.

I always have the copy letter with me when seeing a new GP. They cannot argue with a professor surgeon.

You must feel very ill, I hope that you can sort it out soon, good luck.

[serenfach]

There is a "rule" somewhere where it says anyone who has had thyroid cancer must have a TSH below 1. If you google "What are the guidelines for TSH suppression in thyroid cancer?" there is a fair bit there, including instructions to the medical staff. May be worth looking through and printing off something for your Endo. Sending a hug.