Severely hyper-t that won't control so I can undergo cancer surgery

[Guest guest]

I just turned 60 and was diagnosed extremely hyperthyroid in late

November at the same time as getting a diagnosis of endometrial

cancer. I cannot have the needed hysterectomy for the cancer until

my thyroid is controlled, as they cannot risk anesthesia. I had a

scan, which showed a hot node on the left side. They wanted to do an

u/s and possible needle biopsy but I couldn't make that appointment

before Christmas and due to time constraints of getting me to a point

to have my surgery, they opted for meds instead. I haven't yet asked

for copies of my lab reports so I don't know numbers, but I was first

put on 60 mg methimazole 3x daily, along eventually w/ propranolol 20

mg. I had difficulty sticking to taking three doses a day (I

occasionally forgot the middle dose, and sometimes was too tired to

stay up or remember the last dose), so after 2 weeks, even though I'd

taken most of the prescribed meds (not yet propranolol) my levels had

gone up! They insisted I had to diligently stick to full dosage,

which I then tried my best to do. 2 weeks later my levels were down

only very, very slightly, apparently, so internists consulted again

w/ endocrinologists and decided to up my methimazole dosage to 80 mg

a day, which they now say I can take by dividing into two doses

daily instead of three. I started the propranolol after the first 2

weeks on methimazole and at first had some nausea or maybe slight

dizziness, which apparently can be normal for propranolol, but as I

settled into taking the full methimazole amounts regularly, I began

to wonder if it wasn't the methimazole that made me feel nauseated at

times (I run a cat rescue and have had several cats on methimazole,

including three currently, and know that it makes them nauseated

sometimes). Internists prescribed phenergan for nausea but I haven't

used it as I've tried to be careful to eat before taking my meds and

that seems to help. I had this same feeling of nausea and slight

dizziness on and off occasionally for a couple of years before being

diagnosed hyper-t. I have always had a prominent neck, from about

age 16 or so. At 24 I had a scan and was found to have " a lot of

little nodules. " Internist at that time put me on dessicated sheep's

gland thyroid med. My only " symptom " or complaint was tiredness -

been tired all my life, yet also I would consider myself type-A,

always going and going, at least till I got on all these meds lately -

now I don't seem to have energy or enthusiasm for anything even

though I have loads to do - not sure if that's the cancer (supposedly

early-stage) or the thyroid problem. I've never been heavy (104 lbs

at age 24, up to maybe 115-118 in 40's, a little more after

menopause, when I seemed to gain a little for first time in my life,

then since about last summer I've been losing weight and in past 6

weeks dropping it like crazy so I'm about 102 lbs right now and 5'5 "

so kind of skinny - lost muscle mass.

I get more bloodwork Monday. If my levels aren't down they talked

about hospitalization to get them down - don't know what that entails

and not keen to do it as I have 80+ cats in my care and no

arrangements yet for them, plus no health insurance to cover cost.

The hosp. for hysterectomy was going to be enough, I don't want hosp.

for thyroid too. At first I thought surgery on the hot node or

radioactive treatment might be a " cure " and easy way to go

eventually, but after reading some of your posts I'm not at all sure

about either of these things now, but 80 mg of methimazole a day is

proving very, very expensive. Does anyone know of discount programs

for methimazole? I haven't been able to find any.

I am convinced the cancer triggered my hyper-t after probably years

of maybe hypo, as the symptoms all started about same time, and maybe

the cancer is why they can't control the hypter-t, although they say

one has nothing to do w/ the other - I don't think they know what

they're talking about. They said I do not fit profile for Graves (my

eyes, for example, are fine).

[Guest guest]

Hi

When I was hyper and taking both anty-thyroid drugs and propranalol, I found it

was the propranalol that helped me to feel better first. The anti-thyroid meds

I was on only for 2 weeks. My endo changed her mind and decided to use RAI and

ablate my thyroid. That is a whole other story...but I took the propranalol

right from the first and it did help. Apparently not only does it slow down

your heart rate (very important), but also it helps with other hyper symptoms (I

don't know which). It does take a while to control your thyroid with meds. But

it does work. Personally I would not recommend the RAI if you can avoid it.

But your docs are right - you need to get it under control. I too found it

difficult to remember 3 or 4 times daily to take pills. So I started taking

them at the same time every day and that helped. I also assigned my husband the

job of reminding me. That ensured that I would remember because I hate being

'reminded'. I think my main times for meds were meal times. I had to start

eating breakfast to remind me to take my meds. But even now I find it

challenging to remember to take my vitamins daily. Some pills are easier to

remember than others for me and I don't know why that is. Maybe there is a

'buy-in' factor.

There will come a time when you know your body is exhibiting 'hypo' symptoms.

That's when you need to pay special attention and get blood work done. What

tests are your docs using? Your TSH won't change dramatically for a while - and

that's the one most docs like to rely on. Ask them to test your Free T3 and

Free T4 as well if they are not doing so now.

Try not to gain back too much weight. At some point you will likely end up

hypothyroid and this is when you will gain weight very easily. I ate anything

in sight because I was very hungry when hyper. I gained weight while hyper,

continued gaining when I went hypo and now find it very difficult to shed even

one pound. Sounds crazy but that's what it is. For some reason it is very

difficult for people who are hypothyroid to lose weight.

As you move down this thyroid disease road, read as much as you can. You need

to have knowledge to make good decisions. Doctors frequently don't know a lot

about thyroid disease. Even endos - they tend to specialize on diabetes rather

than thyroid - and their egos get in their way often. There is a lot of

information available. You could start by browsing ithyroid.com. Then move

on....

It would be a good idea at some point to get a bone density scan. I have

osteoporosis as a result of my hyperthyroid condition.

I'm thinking that you are probably feeling pretty stressed about now. Stress

aggravates your thyroid condition so if you can let go of any of your stressors

it's a good idea.

As for the eye symptoms, they don't happen for everyone. Consider yourself

fortunate if you don't have them.

Kate

Severely hyper-t that won't control so I can

undergo cancer surgery

I just turned 60 and was diagnosed extremely hyperthyroid in late

November at the same time as getting a diagnosis of endometrial

cancer. I cannot have the needed hysterectomy for the cancer until

my thyroid is controlled, as they cannot risk anesthesia. I had a

scan, which showed a hot node on the left side. They wanted to do an

u/s and possible needle biopsy but I couldn't make that appointment

before Christmas and due to time constraints of getting me to a point

to have my surgery, they opted for meds instead. I haven't yet asked

for copies of my lab reports so I don't know numbers, but I was first

put on 60 mg methimazole 3x daily, along eventually w/ propranolol 20

mg. I had difficulty sticking to taking three doses a day (I

occasionally forgot the middle dose, and sometimes was too tired to

stay up or remember the last dose), so after 2 weeks, even though I'd

taken most of the prescribed meds (not yet propranolol) my levels had

gone up! They insisted I had to diligently stick to full dosage,

which I then tried my best to do. 2 weeks later my levels were down

only very, very slightly, apparently, so internists consulted again

w/ endocrinologists and decided to up my methimazole dosage to 80 mg

a day, which they now say I can take by dividing into two doses

daily instead of three. I started the propranolol after the first 2

weeks on methimazole and at first had some nausea or maybe slight

dizziness, which apparently can be normal for propranolol, but as I

settled into taking the full methimazole amounts regularly, I began

to wonder if it wasn't the methimazole that made me feel nauseated at

times (I run a cat rescue and have had several cats on methimazole,

including three currently, and know that it makes them nauseated

sometimes). Internists prescribed phenergan for nausea but I haven't

used it as I've tried to be careful to eat before taking my meds and

that seems to help. I had this same feeling of nausea and slight

dizziness on and off occasionally for a couple of years before being

diagnosed hyper-t. I have always had a prominent neck, from about

age 16 or so. At 24 I had a scan and was found to have " a lot of

little nodules. " Internist at that time put me on dessicated sheep's

gland thyroid med. My only " symptom " or complaint was tiredness -

been tired all my life, yet also I would consider myself type-A,

always going and going, at least till I got on all these meds lately -

now I don't seem to have energy or enthusiasm for anything even

though I have loads to do - not sure if that's the cancer (supposedly

early-stage) or the thyroid problem. I've never been heavy (104 lbs

at age 24, up to maybe 115-118 in 40's, a little more after

menopause, when I seemed to gain a little for first time in my life,

then since about last summer I've been losing weight and in past 6

weeks dropping it like crazy so I'm about 102 lbs right now and 5'5 "

so kind of skinny - lost muscle mass.

I get more bloodwork Monday. If my levels aren't down they talked

about hospitalization to get them down - don't know what that entails

and not keen to do it as I have 80+ cats in my care and no

arrangements yet for them, plus no health insurance to cover cost.

The hosp. for hysterectomy was going to be enough, I don't want hosp.

for thyroid too. At first I thought surgery on the hot node or

radioactive treatment might be a " cure " and easy way to go

eventually, but after reading some of your posts I'm not at all sure

about either of these things now, but 80 mg of methimazole a day is

proving very, very expensive. Does anyone know of discount programs

for methimazole? I haven't been able to find any.

I am convinced the cancer triggered my hyper-t after probably years

of maybe hypo, as the symptoms all started about same time, and maybe

the cancer is why they can't control the hypter-t, although they say

one has nothing to do w/ the other - I don't think they know what

they're talking about. They said I do not fit profile for Graves (my

eyes, for example, are fine).

------------------------------------------------------------------------------

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Checked by AVG Free Edition.

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10:19 AM

[Guest guest]

carocatsaak,

I agree with everything that Kate wrote and advised.

In my case, I was diagnosed as Hyper caused by Graves summer of 2006. I had

some of the symptoms (heat intolerance for one) for a few years. At my first

visit to my endo, he introduced himself to me and the next thing out of his

mouth was RAI was the way to go. Fortunately for me, I had been reading the post

in this and other forums for people with thyroid issues and was certain that RAI

was the LAST, not the first, treatment for my condition. In fact, I saw my endo

at the beginning of this week and he told me that when I came back in 3 months

he wanted to hear my reasons for continuing to refuse RAI. I was prescribed

30mg/day of methimazole and atenolol for the hypertension caused by the

hyperthyroidism and some of the symptoms of the hyperthyroidism. I took this

combination for a little bit more than one year. During that time, since neither

my edno or PCP did it, I needed to add to my periodic blood tests the check for

my white blood cell count since methinmazole has

a side effect in some people that causes the WBCC to drop to a dangerous level.

And 6 months into the " treatment " I was told by the endo that we needed to check

my liver's status. The endo claimed that liver damage was more common than a

drop in WBCC. Anyway, I had none of these side effects. HOWEVER, as many others

discovered, soon into my treatment I began to gain weight even though the

thyroid hormones were still out of range. Both my endo and PCP claimed that it

wasn't my medication and I needed to change my diet and start exercising more.

As an technocrat whose diet and exercise level maintained the same weight for 20

years, I found this disconnect between what I saw as the new variable,

methimazole, and my body's rapid weight gain some form of denial on their parts.

Many people stop taking their anithyperthyroid medications after only a 10 pound

gain. In my case, I followed my doctors' orders rather than my body's feedback

and gained almost 60 pounds. IMHO, the big

problem is/was the doctors were only testing my TSH levels and until that was

into the HYPOthyroidism range they had me continue with my daily dosage of

methimazole that I started with. When in October when my TSH level showed that

if I was seen for the first time I would have been diagnosed as having

hypothyroidism I was told that I could stop taking my medications, which I did.

In December I had my blood tested in anticipation of my meeting this week with

my endo I checked the boxes for T3 & T4, in addition to the TSH the endo

checked. When it came back with my T3 & T4 elevated but not out of range and my

TSH undetectable, the endo's office called me to increase my methimazole by 0.5

tablet to 2.5 tablets per day. I said " okay " to acknowledge that I had heard

them. I think I took maybe a half dozen tablets at most over the next two weeks

at the 1 tablet per day rate. When I went to the endo office this week the nurse

asked me how much methimazole I was taking daily and I

told her that I was taking a half tablet per day, which really PO'd her as she

was the person that had called and gave me my instructions to increase it to 2.5

tablets. I told her that she told me to increase it by 0.5 tablets and that my

previous instructions were to stop taking medications and 0.5 plus zero was 0.5,

not 2.5. When she looked a little bit more into my records she found the entry

where their office had told me to stop taking my medications, which PO'd her

even more. She then sternly told me that I would have to discuss this with the

endo! Then she took my blood pressure and despite being upset with her, off the

atenolol since October, NOT changing my diet and exercising more, and gaining

another 10 pounds since I had last been weighed (261 pounds), I was 110/80. When

she was done recording my BP and pulse count, I asked her if she would share the

results of the BP measurement. She did, I asked her why I needed to ask her for

it, and she told me that she

didn't share them unless asked because people don't understand the meaning of

the results. What a start for a medical exam. On a good note, when I challenged

my endo what test " proved " that my hyperthyroidism was caused by Graves'

disease, he looked thru my records and then grabbed my blood test sheet back

from me and checked another box.

Anyway, good luck. Listen to your body, read and research as much as possible

because as Kate already mentioned, endo's see mostly diabetics and most thyroid

issues are hypo not hyper, and remember, RAI is not reversable. BTW, USATODAY

had a series one day this Fall about RAI to " kill thyroid cancer. "

http://www.usatoday.com/news/health/2007-11-18-thyroid-cover_N.htm

http://www.usatoday.com/news/health/2007-11-18-thyroid-i131_N.htm

http://www.usatoday.com/news/health/2007-11-18-thyroid-basch_N.htm

http://www.usatoday.com/news/health/2007-11-18-thyroid-larson_N.htm

Kate <Fraserk@...> wrote:

Hi

When I was hyper and taking both anty-thyroid drugs and propranalol, I found it

was the propranalol that helped me to feel better first. The anti-thyroid meds I

was on only for 2 weeks. My endo changed her mind and decided to use RAI and

ablate my thyroid. That is a whole other story...but I took the propranalol

right from the first and it did help. Apparently not only does it slow down your

heart rate (very important), but also it helps with other hyper symptoms (I

don't know which). It does take a while to control your thyroid with meds. But

it does work. Personally I would not recommend the RAI if you can avoid it. But

your docs are right - you need to get it under control. I too found it difficult

to remember 3 or 4 times daily to take pills. So I started taking them at the

same time every day and that helped. I also assigned my husband the job of

reminding me. That ensured that I would remember because I hate being

'reminded'. I think my main times for meds were meal

times. I had to start eating breakfast to remind me to take my meds. But even

now I find it challenging to remember to take my vitamins daily. Some pills are

easier to remember than others for me and I don't know why that is. Maybe there

is a 'buy-in' factor.

There will come a time when you know your body is exhibiting 'hypo' symptoms.

That's when you need to pay special attention and get blood work done. What

tests are your docs using? Your TSH won't change dramatically for a while - and

that's the one most docs like to rely on. Ask them to test your Free T3 and Free

T4 as well if they are not doing so now.

Try not to gain back too much weight. At some point you will likely end up

hypothyroid and this is when you will gain weight very easily. I ate anything in

sight because I was very hungry when hyper. I gained weight while hyper,

continued gaining when I went hypo and now find it very difficult to shed even

one pound. Sounds crazy but that's what it is. For some reason it is very

difficult for people who are hypothyroid to lose weight.

As you move down this thyroid disease road, read as much as you can. You need to

have knowledge to make good decisions. Doctors frequently don't know a lot about

thyroid disease. Even endos - they tend to specialize on diabetes rather than

thyroid - and their egos get in their way often. There is a lot of information

available. You could start by browsing ithyroid.com. Then move on....

It would be a good idea at some point to get a bone density scan. I have

osteoporosis as a result of my hyperthyroid condition.

I'm thinking that you are probably feeling pretty stressed about now. Stress

aggravates your thyroid condition so if you can let go of any of your stressors

it's a good idea.

As for the eye symptoms, they don't happen for everyone. Consider yourself

fortunate if you don't have them.

Kate

Severely hyper-t that won't control so I can undergo

cancer surgery

I just turned 60 and was diagnosed extremely hyperthyroid in late

November at the same time as getting a diagnosis of endometrial

cancer. I cannot have the needed hysterectomy for the cancer until

my thyroid is controlled, as they cannot risk anesthesia. I had a

scan, which showed a hot node on the left side. They wanted to do an

u/s and possible needle biopsy but I couldn't make that appointment

before Christmas and due to time constraints of getting me to a point

to have my surgery, they opted for meds instead. I haven't yet asked

for copies of my lab reports so I don't know numbers, but I was first

put on 60 mg methimazole 3x daily, along eventually w/ propranolol 20

mg. I had difficulty sticking to taking three doses a day (I

occasionally forgot the middle dose, and sometimes was too tired to

stay up or remember the last dose), so after 2 weeks, even though I'd

taken most of the prescribed meds (not yet propranolol) my levels had

gone up! They insisted I had to diligently stick to full dosage,

which I then tried my best to do. 2 weeks later my levels were down

only very, very slightly, apparently, so internists consulted again

w/ endocrinologists and decided to up my methimazole dosage to 80 mg

a day, which they now say I can take by dividing into two doses

daily instead of three. I started the propranolol after the first 2

weeks on methimazole and at first had some nausea or maybe slight

dizziness, which apparently can be normal for propranolol, but as I

settled into taking the full methimazole amounts regularly, I began

to wonder if it wasn't the methimazole that made me feel nauseated at

times (I run a cat rescue and have had several cats on methimazole,

including three currently, and know that it makes them nauseated

sometimes). Internists prescribed phenergan for nausea but I haven't

used it as I've tried to be careful to eat before taking my meds and

that seems to help. I had this same feeling of nausea and slight

dizziness on and off occasionally for a couple of years before being

diagnosed hyper-t. I have always had a prominent neck, from about

age 16 or so. At 24 I had a scan and was found to have " a lot of

little nodules. " Internist at that time put me on dessicated sheep's

gland thyroid med. My only " symptom " or complaint was tiredness -

been tired all my life, yet also I would consider myself type-A,

always going and going, at least till I got on all these meds lately -

now I don't seem to have energy or enthusiasm for anything even

though I have loads to do - not sure if that's the cancer (supposedly

early-stage) or the thyroid problem. I've never been heavy (104 lbs

at age 24, up to maybe 115-118 in 40's, a little more after

menopause, when I seemed to gain a little for first time in my life,

then since about last summer I've been losing weight and in past 6

weeks dropping it like crazy so I'm about 102 lbs right now and 5'5 "

so kind of skinny - lost muscle mass.

I get more bloodwork Monday. If my levels aren't down they talked

about hospitalization to get them down - don't know what that entails

and not keen to do it as I have 80+ cats in my care and no

arrangements yet for them, plus no health insurance to cover cost.

The hosp. for hysterectomy was going to be enough, I don't want hosp.

for thyroid too. At first I thought surgery on the hot node or

radioactive treatment might be a " cure " and easy way to go

eventually, but after reading some of your posts I'm not at all sure

about either of these things now, but 80 mg of methimazole a day is

proving very, very expensive. Does anyone know of discount programs

for methimazole? I haven't been able to find any.

I am convinced the cancer triggered my hyper-t after probably years

of maybe hypo, as the symptoms all started about same time, and maybe

the cancer is why they can't control the hypter-t, although they say

one has nothing to do w/ the other - I don't think they know what

they're talking about. They said I do not fit profile for Graves (my

eyes, for example, are fine).

----------------------------------------------------------

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Checked by AVG Free Edition.

Version: 7.5.516 / Virus Database: 269.19.1/1219 - Release Date: 11/01/2008

10:19 AM

[Guest guest]

Something I would do is to make sure your diet restricts things that

tend to increase thyroid levels and emphasizes foods that tend to

suppress it.

This means cutting out dairy, fish, sugar, caffeine and eating lots

of cabbage, sweet potatoes, and tofu.

Good luck!

Nissa

[Guest guest]

Also, do not use iodized salt, and restrict high-iodine foods.

cindy

>

> Something I would do is to make sure your diet restricts things that

> tend to increase thyroid levels and emphasizes foods that tend to

> suppress it.

>

> This means cutting out dairy, fish, sugar, caffeine and eating lots

> of cabbage, sweet potatoes, and tofu.

>

> Good luck!

>

> Nissa

>

[Guest guest]

Hey Kate, thanks for the comments. I figured stress was probably a

trigger for thyroid problems (and cancer too). I've been stressed out

for a long time - not really at all by the diagnoses but because I run

a cat rescue organization and have too many cats, no help, and no

money - was going to start a thrift and gift store to help remedy all

that but those problems are compounded now by not having health

insurance myself and at 60 I'm not old enough for Medicare. I don't

want to apply for help yet because I'm afraid they'll take what little

I have and that is all there is to take care of the cats if something

happens.

I'm not sure which test(s) they've run (had another today but no

results yet), but will ask when they call w/ those results.

[Guest guest]

Right now I would be happy to gain weight - at 102 I was scarily skinny

for someone 5 ft. 5 ins. I think I have maybe put on a pound or so in

the last two weeks. I have never been overweight in my whole life

(except right after I had my son - I did have to diet that off).

Otherwise never over about 123 lbs. 115 would be normal for me.

I'm taking the meds twice daily at the moment and don't have any

problem really remembering that - I do midday and middnight more or

less and that way I've eaten plenty beforehand (if I don't eat enough I

find I'm more likely to feel nauseated). I don't have anyone to remind

me - the cats aren't much use for that!

[Guest guest]

Aagh, Nissa, I think I would rather die! I am a big eater of fish,

dairy, loads of sugar (I drink probably 6-8 cups of hot tea daily, each

w/ at least two teaspoons of sugar). I don't drink coffee. I'll eat a

sweet potato now and then but not having been brought up w/ them I

couldn't fancy " lots " of them, and I couldn't eat tofu if you paid me.

Cabbage once in a blue moon (but I like brussels sprouts).

Since I've eaten the same thing all my life but my thyroid only

recently went hyper (it was hypo years ago and maybe for longer than I

knew), why would changing my diet now affect anything?

I eat almost no meat, by the way, only chicken.

>

>

[Guest guest]

Is there a list of foods high in iodine?

[Guest guest]

Even though meds work for me, I notice that when I eat those things my

levels are noticeably higher. Maybe try it for a week and see if it has an

effect?

Nissa

On Mon, 14 Jan 2008 19:52:11 -0000, " carocatsaak " <Carocats@...>

wrote:

> Aagh, Nissa, I think I would rather die! I am a big eater of fish,

> dairy, loads of sugar (I drink probably 6-8 cups of hot tea daily, each

> w/ at least two teaspoons of sugar). I don't drink coffee. I'll eat a

> sweet potato now and then but not having been brought up w/ them I

> couldn't fancy " lots " of them, and I couldn't eat tofu if you paid me.

> Cabbage once in a blue moon (but I like brussels sprouts).

>

> Since I've eaten the same thing all my life but my thyroid only

> recently went hyper (it was hypo years ago and maybe for longer than I

> knew), why would changing my diet now affect anything?

>

> I eat almost no meat, by the way, only chicken.

>>

>>

[Guest guest]

I had bloodwork done yesterday morning but they still haven't called w/

results.

What else is OK to eat besides sweet potatoes, cabbage and tofu - I

can't do the tofu and swt. taters and cabbage is hardly a balanced

diet - just kidding!