Anybody know about life after a thyroidectomy ?

[PI Guy]

have another blood test, doctors don't know everything. Be well.

[PriorityOne]

Thanks PI. She gave me the form for that as well.... so am off to the hospital tomorrow. I know what you mean about doctors though. Maimie said similar in an earlier post....

[j.barton1]

Hiya, My little boy has had a thyroidectomy and he always has colds, sore throats etc...more than just normal kiddie colds. He also has really lethargic times too but his t4 & t3 levels are fine. They even ended up doing a full blood check to see if there were any other underlying issues but they were okay. In the support groups he is in...most people who have had thyroidectomys have these issues...the thyroid affects so many things idont think the docs can possibly check for everything!!
Jenny

[PriorityOne]

That must have been horrible for your son to go through... Being so young, I expect he had problems explaining how he was feeling, let alone attempt to understand any of it ! I hope he's ok now...

I don't think I've come to grips with all the things that have sprung up as problems over the past few years... you are right that the thyroid effects so many different things... eyes, skin, hair growth, mood, energy levels... and so on. I had eye problems for ages and even now, have to have a certain kind of contact lense because they are so dry.

My endocrinologist has given up trying to find answers to some of the other issues though.... they are "ideopathic" apparently. ... so when I can afford it and have time, I'll go and see a Chinese herbalist and see if he/she can sort me out.... lol

[j.barton1]

MMM i've thought of that...also the magnetic bands are meant to help? I know how it is with the different symptoms...my son has a really itchy scalp when they change his tablets, he also gets bad joint pains..knees especially! Doc said its not related...obviously he knows better LOL

He was 2 when he had the TT and he had been very lethargic and ill before...always slept, never moved off the sofa really...not a normal toddler, He is just 5 now and still needs to rest more than the others but medically he is okay now..itsjust the other stuff to cope with like you....without a diagnosis or related cause the normal docs..endo's paeds etc are stumped!!
xx

[caro]

Poor little mite. I didn't know it could be a problem for children too.

[j.barton1]

Hi Caro, Tom had thyroid cancer, youngest child on record unfortunatley. not many cases in the uk, a few un the us though. Luckily we got through it.
xx

[caro]

Oh bless him. That must have been awful for you all. I'm so glad he's recovered

[j.barton1]

Thanks hun xx

[PriorityOne]

He is such brave little chap.... what an ordeal to go through ! Joint pains can be related to thyroid illness though.... I read a long time ago about pains down the tibia bones (lower legs) and about aching joints and muscles in general. Not sure why that is, but it happens. Also PI Guy posted about having muscular problems connected to thyroid and I had them as well when my thyroid was made under-active before the surgery. I can remember crouching down for things and then having to hold onto something to come back up again slowly.... and I'm not that old.... lol.

It's comforting to know that the tiredness is connected to thyroid in some ways because now that I do know it's part and parcel of it, I don't feel so guilty about feeling too washed out to go places when I'm asked to.

It might be worth having a word at your son's school about this... just in case they think he's trying to get out of PE or something. I'm so glad to hear that he's on the right treatment and things are good now.... bless him !

[j.barton1]

Thanks, school's okay at the moment, i think sometimes tom copes better than me though!! The docs make me feel like i am neurotic at times, its so much harder with him than my other children, his behaviour is erratic especially if his meds change...its like having a hormonal teenager in the house sometimes and bless him he doesnt really understand....he was so hyped up the other day he ended up hitting me, then other times he is so sluggish i have to carry him about. the main thing is getting the meds right with any thyroid related issue....with tom being little this is where we are struggling.
xx

[PriorityOne]

Have you thought about claiming Disability Living Allowance for him ? I made a successful claim for my daughter when she suffered with chronic asthma as a young child.... on the basis that her care needs exceeded those of a "normal" child of the same age.

[j.barton1]

Hi, Sorry i didnt see the message before!! I do get lower rate DLA for him, although it has been hard to get it, 1st time we applied we had to appeal and go to a tribunal...then we got it for 2yr, we just had to reapply and again they knocked him back...i appealed again and we have now got it till he is 10 so thats better.
Jenny xx

[WolfSong2000]

Get a second opinion on your thyroid levels...took doctors over 5 years to diagnose me, whereupon I got a random phonecall from GP surgery telling me to come in for a "repeat prescription", when I asked "repeat prescription for what - I'm not on anything?!" they finally admitted they;d sscrewed up and my thyroid levels were half of the minimum they should have been.

Anyhow, have spent the past year trying to get meds at a decent level...one doctor told me that I was "within normal range" despite the fact I was still totally exhausted, so saw another doctor who said I was in the normal range, but barely, so they've upped my dose and it seems to be helping...just need another blood test in the next week or two to confirm.

Get a GP to explain what the parameters for "normal" thyroid levels are and what your levels are exactly and then you'll be in a better position to judge whether a higher dosage would be appropriate.

[BELLA 47]

Hi Priority One,
There's a wonderful self-help group called the 'Thyroid Patient Advocacy-Building UK Awareness'. I can't seem to get their website address to print on this quick reply but if you put the above details in your search engine, it will come up.
You can join the group and post your questions and you will find contacts and information that will definitely help you. Good Luck!
Bella