Severe hyperthyroidism

[Loose rivets]

Already stressed out when I got the news of one of 'my' little ones having this problem. Rest heart rate around 120.

Now 14, she's been utterly vital all her life and into every sport. Now looking at Hashimoto’s disease or perhaps Grave’s disease.

She's receiving skilled advice in America but I wondered if anyone had experience that by chance might help.

[obgraham]

Seems a bit young for that, but "it is what it is" as they say now. Anyway, there are pretty standard treatments for this. Proper testing for causes and diagnosis is first, then tailor treatment to the specific case. Long term results should be excellent.

Standard treatments are surgery, antithyroid medication, or radioiodine. Not my field, so I don't know if the I-131 is appropriate in young females, but the endocrinologists will advise appropriately.

[Loose rivets]

It's certainly a distressing time in the Rivets' family. The 14-year-old has confirmed Graves and the recommendation is radio iodine ablation. It leaves her with a lifelong reliance on synthetic replacement drugs and the bewildering costs that will never go away when you don't have social medicine.

It's a miserable decision for any parent to make, despite my son being able to analyse the technical details and search for a last minute alternative. So far, one has not been found.

My wife an I played a major part in her childhood. There is of course no difference between how we feel about these children and their parents as children. The powerlessness is utterly draining.

The concept of immune reaction causes is something I'm very aware of with personal issues, so I'm the first to have an open mind on those hypotheses.

I did forward the above posts. Thanks for your input.

If anyone could think of any procedure that could stop the damaging treatment, I'd of course be very grateful.

[obgraham]

Rivets, with Graves' it's a diffuse process, not a local nodule, etc, which surgery could remove and leave normal thyroid function. So all the options (surgery, I-131, or antithyroids) will leave her requiring replacement therapy. As things go that is not an expensive proposition -- plenty of people take thyroid replacement for life.

As before, sounds like she is getting excellent care. Don't be detouring into Woo.

[Loose rivets]

Winnerhofer and obgraham

I did forward my PPRuNe thread to my son but I'm being a bit tardy myself due to stress and and the need for two minor ops and perhaps spinal surgery in my neck. Oh, and the hernia, I'd forgotten about that. One is not at one's best so I've only just watched Dr Osansky's video. He certainly sounds very genuine.

My son sent this last night but is of course primarily concerned about the racing heart being dangerous. The controlling drugs need to be stopped for two weeks prior to the ablation. The kid was an athlete, but I'm not sure if that's a good thing or not. A powerful heart may be counterproductive when on full throttle.

These are the kind of things racing around my mind during this short run-up period.

Dr Osansky mentions the conversion of one T into another. I wonder if that gives a ray of hope about the lifelong shortfall of specific hormones.


Hi Dad, We already have a pretty good idea of what’s turning the thyroid full on. Antibodies that have attached to, and activated, TSH (thyroid stimulating hormone) receptors on the thyroid. In this sense, it’s an autoimmune disease. TSH is produced by the pituitary, after being stimulated by another hormone produced by the hypothalamus. Zoe’s TSH levels are ridiculously low (pretty much non-existent) because the brain’s being told that the thyroid hormones are ridiculously high. Thyroid destruction and subsequent thyroid (T4) hormone pills will never fully replace a fully-functional, constantly monitored, negative feedback system. The feedback will be based on monitoring of hormone levels through blood tests every few months to a year. So that’s the biggest loss (also, that the thyroid produces both T3 and T4 hormones, but only T4 is used in hormone replacement therapy. Don’t know what the lack of T3 does…, but I guess it’s not enough for people to worry about.

[Winnerhofer]

There's a top humane specialist in Geneva if you're not too far away.
Will provide details on request via PM.

[Loose rivets]

I tried to PM, but there seems to be some restriction switched on. Box full, or some other issue. It doesn't say.

[Radgirl]

Loose Rivets

I appreciate that you are concerned, but this is a relatively common and straightforward problem. I dont understand about ablation and your daughter is on the young side but obgraham is on the ball with his advice.

You do not need to go to Geneva nor anywhere else so please ignore bizarre postings. The initial management is to use drugs to block the excessive thyroid hormones and this is normally well tolerated. That is obviously only a blocking mechanism so you then need to stop the additional hormones permanently either by removing thyroid tissue surgically or knocking it off with radioactive iodine. I would advise you to sit down with the paediatrician, endocrinologist and surgeon and go through relative benefits and risks to come to a decision.

Surgery is straight forward - we often do 3 in a morning, Home the next day, and some patients do not need thyroid replacement therapy. However, it really is taking a tablet once a day and having a blood test every 3 months. In the UK the family doctor does it, not a specialist.

The issue of T3 vs T4 is irrelevant at this stage. We do use both, but only one or the other for a particular patient. It does not matter that we dont replace both.

The concept of a fully monitored feedback system is a bit off track. True the regulation is pretty high powered, but the thyroid hormones are long acting and dont go up and down minute to minute. So taking one tablet a day really does fully replace it.

You would be surprised how many older people need thyroid replacement when the gland wears out! Please put this to one side and sit down with all the relevant doctors to decide on which treatment fits best.

PMs welcome

[gingernut]

Radgirl is spot on.

I'm not sure who labelled the problem "severe."

It probably isn't that helpful.

"Hyper" or "hypo" thyroidism tends not to take years off life, as long as you get proper advice.

Unfortunately, I'm not sure that you will get proper advice here.

Sorry.

[Loose rivets]

radgirl and everyone - sorry, my CCleaner stopped the posts showing as new.

The youngster is my granddaughter though not really any difference as we spent years with one foot in the US and one in the UK.

Her dad is a professor with knowledge that crosses over into medicine. However, it's sometimes worse to know the technicalities, though this time it paid off. They're off up north (in Texas) tomorrow and I'm fairly sure, going the iodine route.

Everyone's been so comforting - friends that we had no idea about, tell of their decades on supplements. Surprising.

I think the irreversibility of the treatment is the main issue. It's the burden of making a decision for the child. But, that's what parents have to do. For my part, I just wish I could be there to help out and there's a certain irony in the fact that I'd have stayed there if it hadn't been the cost of American medicine for an uninsurable old bloke. Strangely, today, I read that the US is one of the top spenders per capita in medicine, though goodness knows where it goes.