Hyperthyroidism

Turquoise

Any other sufferers? I've been dealing with it for the last 3 years. (I say dealing with it, that's when I was diagnosed - I think I may have been out of range for a year before diagnosis)
I'm currently not on meds, 6 months or so and yet to go out of range - fingers crossed! I'd rather not have to opt for surgery or RAI, though I know the chances are it may be necessary in the future.
Anyone any experience of RAI or surgery for hyperthyroidism? Or any success stories where the meds are concerned?

CathyMoran

Hi,

I was one of the youngest people in the country to have hyperthyroidism at the age of 4. My dad also had it so he knew the signs (daddy had surgery). I had radiotherapy which was fine, the only thing was that I went underactive at the age of 11. I did not have any problems with the treatment. Good luck.

BanzaiBk

Goodluck with your treatment! I'm at the other end of the spectrum with hypothyroidism:o I had my operation done to remove the adenoma in February last.

Redshift

Yeah, I had it a few years back though Graves Disease. I was on Inderal and Mercazole for a good while to try and calm it down but I ended up having two sessions of RAI to sort it out. I wanted the surgery but they thought it was too risky because I had reached dangerous levels meaning off the chart on my tests and was severly hyperthyroid and ended up in hospital for three weeks
with Thyrotoxicosis worst experience of my life for sure and a horrible thing to go through.

RAI worked well though I'm on Thyroxine for life now:(

Turquoise

CathyMoran wrote:

Hi,

I was one of the youngest people in the country to have hyperthyroidism at the age of 4. My dad also had it so he knew the signs (daddy had surgery). I had radiotherapy which was fine, the only thing was that I went underactive at the age of 11. I did not have any problems with the treatment. Good luck.

Woah, I thought I was young at 14. :eek:
The idea of RAI scares me...I know it's silly, they wouldn't do it if it wasn't safe, but putting a radioactive substance in my body freaks me out! :eek:


Redshift - how long where you on the Inderal and Mercazole for? The first time around my stupid doctor only left me on it for a few months, so I was out of range within 3 months of coming off them. After being sent to a new doctor I was on them for 18 months, and now it's a few months on. I'm keeping my fingers crossed but I've yet to hear any positive outcome where the med treatments are concerned. It always seems to come down to RAI.

Can I ask what way the RAI works, is it just a pill or something? And temporary side-effects?

Redshift

Turquoise wrote:

Redshift - how long where you on the Inderal and Mercazole for? The first time around my stupid doctor only left me on it for a few months, so I was out of range within 3 months of coming off them. After being sent to a new doctor I was on them for 18 months, and now it's a few months on. I'm keeping my fingers crossed but I've yet to hear any positive outcome where the med treatments are concerned. It always seems to come down to RAI.

Can I ask what way the RAI works , is it just a pill or something? And temporary side-effects?

About 6 months and then I became allergic to Mercazole literally overnight and came up in blisters all over, I was switched to propranolol for about 3 months but it was ineffective and my condition deteriorated suddenly and fairly rapidly to where I got an emergency appointment to see the consultant next day. Unfortunatley that morning while waiting in the outpatients dept it all came to a head and I hit the deck, woke up that evening in a hospital bed feeling like death and with sore head:p.

The RAI comes as a little pill inside a fairly hefty lead container, which the nurse gives to you to open and swallow without touching the pill.
You will have to do an uptake test first which involves taking a weak RAI pill the week before which allows them to see if your thyroid will take up the RAI before they give it to you.

There are very little side effects apart from some tenderness in the neck for about a week, you will also not be allowed near your children for a while
and will need your clothes and stuff washed seperatly.
You will also be advised against either fathering a child or becomming pregnant for about 9 months I think. So there are some things to think about.

I would have prefered the surgery as I share the same concerns about radiation as you but in my case I was out of options and surgery was not a runner given the state I was in at the time.

Good luck getting it sorted, if you ever want to chat about it or ask a question about my experience feel free to drop me a PM

Turquoise

Redshift wrote:

About 6 months and then I became allergic to Mercazole literally overnight and came up in blisters all over, I was switched to propranolol for about 3 months but it was ineffective and my condition deteriorated suddenly and fairly rapidly to where I got an emergency appointment to see the consultant next day. Unfortunatley that morning while waiting in the outpatients dept it all came to a head and I hit the deck, woke up that evening in a hospital bed feeling like death and with sore head:p.

Is that the "thyroid storm" I've read about? Eeek, that does not sound pleasant!

Redshift wrote:

There are very little side effects apart from some tenderness in the neck for about a week, you will also not be allowed near your children for a while
and will need your clothes and stuff washed seperatly.
You will also be advised against either fathering a child or becomming pregnant for about 9 months I think. So there are some things to think about.

Well pregnancy is definitely not something I'm planning for the next few years, so that's not an issue. I've just started my Leaving Cert year though....if it came down to it, would RAI require me to miss much/any school? My doc has said if it goes out of range this year, he'll probably just put me on the meds until my Leaving is over, then think about RAI/surgery next summer - but I've been dealing with this for years, I just want it sorted asap, you know?

Redshift wrote:

I would have prefered the surgery as I share the same concerns about radiation as you but in my case I was out of options and surgery was not a runner given the state I was in at the time.

Good luck getting it sorted, if you ever want to chat about it or ask a question about my experience feel free to drop me a PM

Everyone seems keen on the RAI, but the only people I know who have had it are past child-bearing age. Studies have apparently been done and there isn't any effect on the foetus in years to come, but it does worry me. :rolleyes:
Thanks for the offer. I've another appointment with my endo in 2 weeks, so depending on the outcome I might be in touch.

Redshift

Yeah, it's what is called a thyroid storm and belive me you don't want to go there, so stay on top of it.;)

If you have the RAI you will probably miss a week or two so of school as you would be in prolonged proximity to your classmates and teacher, which could be dangerous to them.

You're not on meds? at the moment, that would strike me as a good sign if you can manage without them.
Do you have a tremor in your hands if you hold them out in front of you?

Sometimes the condition is temporary and they use the medication to ease the symptoms in the hope that it will correct itself.

Did you find what causes your hyperthyroidism there are a few causes if I remember correctly, mine was graves disease which is an immune system disorder.

The only advise I would give to you about RAI is to be sure that it's right for you as it's a one way ticket and will leave you hypothyroid and on thyroxine for life, that being said don't let this fact alone stop you as hyperthyroidism is dangerous to your health whereas hypo is not dangerous (more inconvienient) nor a problem if managed.

Turquoise

Just had a call from the doctor. Hyperthyroid, again.
It's down to surgery or RAI now...really unsure. *sigh*

CathyMoran

Turquoise wrote:

Just had a call from the doctor. Hyperthyroid, again.
It's down to surgery or RAI now...really unsure. *sigh*

Both options work really well. I do not remember any problems with the RAI and my dad was fine when he had the surgery. Good luck with whatever you decide.

spurious

I have Hashimoto's but am severely hypo so I never had to have the RAI.

The best source for thyroid info on the net is Mary Shomon's site at http://thyroid.about.com/. She has an extensive range of articles and forums, where you can ask people who have been through it all before.

tk123

Anybody had surgery for it? I've been on neomercazole for 4.5 years now and they found a cystic nodule a few months back on one side thats coming out next year. Also has anybody had problems with itching/dry skin?

Carsinian Thau

I've been on Carbimazole for the past six years. Tried to come off twice but went out of range both times relatively quickly. Doctor doesn't seem to be particularly eager to take me off meds or offer me any other treatment so I'm on this for the time being....

N8

anyone try anything other than drugs, drugs, radiotherapy or surgery?

Turquoise

Booked in for surgery this month. :eek: Wish me luck!

LegacyUser

I have just been diagnosed with Hyperthyroid... I always thought someone with this condition would be Hyperactive etc ?? And possibly be losing weight ? If this is the case I have been wrongly diagnosed... Its the complete opposite with me..... lack of energy... and have put on quite a lot of weight in the last 2 months .... I have been prescribed Neo-Mercazole 20mg a day... I am hoping this medication will give me back some energy and hopefully help me lose weight. Here's hoping

tk123

When I started out I WAS hyper say during the day with palpatations and I lost loads of weight but by early evening this would catch up on me and i'd be knackered and falling asleep. It's early days for you thou - so stick with the medicine and it'll kick in after a couple of weeks and you'll start to feel better.

Corruptedmorals

I'm hypothyroid...last TSH level was 6.3. But it's strange because I'm underweight and have been for a good 12 or more years. Apparently because it's genetic hypothyroidism.

spurious

One of the problems with thyroid disorders is that the symptoms can vary wildly from person to person - some hypos lose weight, most gain, some hypers gain weight, most lose. Some hypo people have the full lash of symptoms, dry hair, dry skin, heavy periods, 'thyroid brain fog', significant weight gain etc. Then there are the unlucky people who swing wildly between both. I knew a woman once had to have three wardrobes, covering sizes 8 to 18 as her weight would swing back and forth between the two within the space of a year.

I had a TSH of 155 (lol I can laugh about it now) and I felt half dead all the time. Based on TSH alone I'm currently slightly hyper, but using TSH to measure thyroid function is a bit like checking how heavy the rain is by looking out the window to see how many people have umbrellas up.

majella1917

:oDoes anyone know of a support group in the Dublin area or and any good books about this condition. Have tried Easons and a few other book shops but to no avail. I was diagnosed last May and have had all sorts of symptoms. I went from a healthy looking 9 stone to 11 1/2 stone in little under 6 weeks. I have been taken off Neo-mercozole for the moment but will probably be put back on it next week when I see specialist.

From what I can tell at the moment neo-mercozole does not seem to be an exact science and docs/specialist keep saying it is by trial and error. It is like they are having a big laugh at my expense. Do not feel too well with muscle cramps and severe joint pain at the moment. My voice keeps going also. Anyone else have these symptoms??

majella1917

How does Hashimoto disease differ to Grave's?

spurious

majella1917 wrote: »

How does Hashimoto disease differ to Grave's?

They are both auto-immune diseases, but the basic difference is that Hashimoto's is the most common cause of hypothyroidism while Graves' is the most common cause of hyperthyroidism.

Some people can have both and swing between the two.

majella1917

spurious wrote: »

One of the problems with thyroid disorders is that the symptoms can vary wildly from person to person - some hypos lose weight, most gain, some hypers gain weight, most lose. Some hypo people have the full lash of symptoms, dry hair, dry skin, heavy periods, 'thyroid brain fog', significant weight gain etc. Then there are the unlucky people who swing wildly between both. I knew a woman once had to have three wardrobes, covering sizes 8 to 18 as her weight would swing back and forth between the two within the space of a year.

I had a TSH of 155 (lol I can laugh about it now) and I felt half dead all the time. Based on TSH alone I'm currently slightly hyper, but using TSH to measure thyroid function is a bit like checking how heavy the rain is by looking out the window to see how many people have umbrellas up.

Hi Spurious, would you like to discuss having a thyroid problem?

majella1917

spurious wrote: »

They are both auto-immune diseases, but the basic difference is that Hashimoto's is the most common cause of hypothyroidism while Graves' is the most common cause of hyperthyroidism.

Some people can have both and swing between the two.

I see. I was told and have read that Grave's is mostly inherited. What about Hashimoto's?

spurious

majella1917 wrote: »

I see. I was told and have read that Grave's is mostly inherited. What about Hashimoto's?

I have Hashimoto's. When first diagnosed my parents were saying no-one in either family had had it, but when they sat and thought about it, there were a number of people on one side who had had Graves' and a couple of aunts who while undiagnosed certainly exhibited a lot of the symptoms of hypothyroidism.

My brother has the thyroid antibodies but none of the symptoms.

I'd be happy to chat with you about it if you like, PM me.

*Raverbaby*

Ahhhhh thyroid thyroid thyroid..........where do i start.

Suppose it all started when i was around 15-16-17 im not sure of the exact age cause i presume i was left un diagnosed for ages. I was constantly sick with every sort of chest and throat infection you could imagine when the doctor finally realised the great big lump on my neck might actually be the cause.

Turned out i had hyperthyroidism, and i was put on neomercazole for about a year - to get me though my leaving cert ( which surprisingly didnt go well at all)
And then i had to repeat and it went abit better I suppose apart from being unable to sleep and the shakes i never felt as alive in my entire life, It all happened so quickly i never really stopped to ask all the questions i would have liked to, i was soon being shifted to every hospital around getting ultrasounds, radioactive ultrasounds, biopsys, tubes stuck up my nose, the whole shebang!

But my specialist advised i have my thyroid removed because taking neomercazone wasnt an option as i was a young female and it can effect fertility and they also were unsure if it was cancer because my biopsy didnt come out clear enough, i was ony just gone 18 at the time, and the process was pretty much straight foreward and being honest when they mentioned the "c" word all i wanted was the thing removed, but one thing i have noticed is how ****ing ****e my life seems to be since having it removed.

I seem to be alot more down in myself, i put on weight and i just have no go or motivation anymore, im constantly tired! Even though all my blood test show up as normal i just dont feel like i am. I have told my doctor this but he just kinda seems to ignore me, im currently on 150mg of eltroxin, are there any other types of medication that maybe i could suggest he switch me to - or is this it for life? p.s im only 21 now.

For something that seems so uncomplicated and simple, it really really can mess up your life big time. God damn thyroid gland ( or lack of in my case)

Turquoise

Raverbaby - I had most of my thyroid removed last year (at 17) and have to say I feel great now. I was underactive for about 5 months, (realised in May, a month before the Leaving Cert) but since increasing my eltroxin to 800mcg a week I feel fine. Thankfully my Leaving Cert still went really well, couldn't be happier.

I know I've read online about another drug which provides T4 aswell as T3, (or possibly T3 as well as T4) but I can't remember the name of it off the top of my head. If you do some googling I'm sure you could find out more about it.

Majella1917 - I have a book called 'Thyroid for Dummies' which is pretty good. It simplifies everything so you can understand, but also gives the scientific terms and explanations as well if you need/want them. It goes through various different treatment options as well - it'd be worth a read, I know I found it helpful last year.

Redpunto

Just like to put me tuppence in, Ive had hyper thyroidism for bout 16 years and have been on meds since then and its pretty well under control, I am in no hurry to "permanently" sort with problem out with surgery or radioactive iodine. You dont have to chose when youre young,. i was given the option as well when i was a teenager but my mam was against the idea so time has just gone on and with 2 kids later i wont be putting myself up for either treatment anytime soon.

Redpunto

*Raverbaby* wrote: »

Ahhhhh thyroid thyroid thyroid..........where do i start.

But my specialist advised i have my thyroid removed because taking neomercazone wasnt an option as i was a young female and it can effect fertility

Hi raver baby, seems like youve been through it bad, but i have never heard of neomercazole affecting fertility, the disease itself can but not the medication as far as I now. Like i said in my previous post, Ive been on it for bout 16 years with 2 kids no bothers. The only time i switched meds was when i was pregnant and I was put on propylthiouracil.

LegacyUser

I was told it's not recommended to stay on the neomercazole long term, that's why it came down to surgery or RAI. I also never felt 100% on the neomercazole, even when my levels were in the normal range - I found my emotions were quite out of control.

kowloon

Could abnormally high Calcium levels indicate something to do with a thyroid problem? Are PTH and phosphate levels related to it?

I'm moving to England and have a letter to give to the doctor there but can't make head nor tail of it.