Re: Elaine...thanks for your reply

[Guest guest]

Is there somewhere I could show my Endo documentation of this???(that there

are no risks of long term usage). Somehow I did not get the TSI results

along with my lab report and just took Endo's word that they were normal. I

will find out what they actually were as soon as I get a chance.

Thanks,

Ruthie

Re: been away but back now with disappointing news

> Hi Ruthie,

> Good to see you back but sorry you weren't truly in remission. I suspect

you

> might have still had appreciable levels of TSI when you went off meds and

> weren't truly in remission.

> Hopefully, will chime in as this happened to her and many other

people.

> In Europe, ATDs are frequently used long-term and a number of people in

the

> States also using them long-term. who posts mostly on Mediboard,

has

> been on ATDs for more than 20 years.

> There is no risk to long-term use, as any adverse effects, which are rare,

> usually occur in the first 4 weeks of therapy when ATD doses are high.

> I'd ask for another course of ATDs and before you stop them make sure your

> TSI is low. While normal is <130%, truly normal people have TSI levels of

<2%

> activity. Take care, Elaine

>

>

>

[Guest guest]

Hi Ruthie,

From pg. 700 of Werner & Ingbar's The Thyroid 8th Edition, " Very long-term

administration of an antithyroid drug is safe, and some patients may prefer to

take a low daily dose of either MMI or PTU for decades rather than receive

destructive therapy. " This is from chapter 51, Treatment of Thyrotoxicosis by

, who is one of the world experts.

For this quote he cites an article from JAMA from 1979

Slingerland DW, burrows BA, " Long-term antithyroid treatment in

hyperthyroidism, " JAMA 1979;242:2408. Hope this helps, Elaine

[Guest guest]

Hi Folks,

The author of that book didn't know about me and others who have

developed severe reactions to ptu after years of use.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=9\

611379 & dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

2549809 & dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=1\

1380496 & dopt=Abstract

This type of reaction is very rare but it does happen. My local

doctors didn't know about it. I had to go to the Universityof Virginia

for a diagnosis.

I developed a fever, sore throat, and could not swal,low. One vocal

cord was paralyzed. The infection was treated but the inflammation

remained. It was traced to vasculitis caused by ptu.

Aileen

>>> daisyelaine@... 05/30/03 11:31AM >>>

Hi Ruthie,

From pg. 700 of Werner & Ingbar's The Thyroid 8th Edition, " Very

long-term

administration of an antithyroid drug is safe, and some patients may

prefer to

take a low daily dose of either MMI or PTU for decades rather than

receive

destructive therapy. " This is from chapter 51, Treatment of

Thyrotoxicosis by

, who is one of the world experts.

For this quote he cites an article from JAMA from 1979

Slingerland DW, burrows BA, " Long-term antithyroid treatment in

hyperthyroidism, " JAMA 1979;242:2408. Hope this helps, Elaine

[Guest guest]

Aileen,

I was here when you joined. I remember this was what you said then.

BUT as time went on the doctors said it was from the other drugs you were

taking... or the combination of drugs.

Why has the story changed today ?

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Hi Pam,

Something must have been misunderstood. The ptu caused the

vasculitis. When it was discontinued, I slowly got better.

Aileen

>>> pladd@... 05/30/03 02:21PM >>>

Aileen,

I was here when you joined. I remember this was what you said then.

BUT as time went on the doctors said it was from the other drugs you

were

taking... or the combination of drugs.

Why has the story changed today ?

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of

PTU

(despite an incompetent endo ! ), improved lifestyle, excellent

nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

Thank you So much...this is just the thing I need....I will get this info to

my endo and plan to make this my treatment of choice....Thanks again so much

for your help and for getting back to me!!!

Ruthie

Re: Elaine...thanks for your reply

> Hi Ruthie,

> From pg. 700 of Werner & Ingbar's The Thyroid 8th Edition, " Very long-term

> administration of an antithyroid drug is safe, and some patients may

prefer to

> take a low daily dose of either MMI or PTU for decades rather than receive

> destructive therapy. " This is from chapter 51, Treatment of

Thyrotoxicosis by

> , who is one of the world experts.

> For this quote he cites an article from JAMA from 1979

> Slingerland DW, burrows BA, " Long-term antithyroid treatment in

> hyperthyroidism, " JAMA 1979;242:2408. Hope this helps, Elaine

>

>

>

[Guest guest]

Aileen,

So now I really AM confused. Would not be the first time. ;-)

I remember following along with the story, but since I had no information to

share, we did not correspond. I followed some ones story on this because the

PTU did such a wonderful job for me. Not only my Graves' , but also my bug

eyes eventually went back in my head. All the while I was told by all the

professionals none of this was possible due to the severity of my Graves' at

time of diagnosis.

I am uninsured and only go to the doctor when I am pretty sure there are no

alternatives left. Besides, that 'diet' was finally working.

Anyway.... my reason for concern is the fact that since I have never had the

extra funds for the very important TSI test, I have no way of knowing for

absolutely positive, if this remission is for good.

I know I have the genes for Graves' , but I believe that as long as I have

adequately learned all of my triggers, and now avoid them, I should be good

for life.

BUT.... IF it were to ever come back, the PTU will certainly be my choice.

Thus my concern about your problem.

Then too... all that was awhile back, and I must admit, sometimes it is hard

to remember why I went to the other room, much less some thing that long ago

It must have been at least 6 months ago. Now I am wondering who it was? =

:-o Darn it... I hate it when this happens.

So are you completely better now ? We RARE birds need to stick together .

-Pam L -

3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU

(despite an incompetent endo ! ), improved lifestyle, excellent nutrition,

herbs, and looking at the big picture.

Pills alone only help the symptoms. We must help our bodies to heal.

[Guest guest]

>>> pladd@... 05/30/03 20:13 PM >>>

Hi again,

Sorry for the confusion but I have had such a bad health year I can

get confused myself. What happened was , about a year ago now I

developed the vasculitis which was due to ptu. I went off ptu. Then

last December I develped pulmonary embolisms. These embolisms did not

have anything to do with ptu or with Graves disease. I have now

recovered completely from the pulmonary embolisms.

Anyway, there can be side effects from ptu after many years of use.

These happen rarely, but they do happen. The only references I can

find to these effects are on Pub Med.

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi

Type in P-ANCA and propylthrouiricil and you will get many references.

P-ANCA is a blood test which is sometimes positive in patients who use

ptu and is positive in patients who develop vasculitis from using ptu

for a long time.

I had a difficult time believing that all this was possible. I had

been told that after using ptu for 8 years, I would not have any

problems. Side effects only occured at the beginning of usage. Dr.

Janet , a rheumatologist at UVa , figured out what as going on

with me.

I feel an obligtion to tell others about my experience. Tapazole is

likely a safer drug to use. If you should need ATD's again, my advice

would be to go with Tapazole rather than ptu.

As for me, my voice now tires easily. I can no longer sing or project

my voice . These effects were due to the vasculitis. The UVa doctors

wanted to do RAI for the Graves and so far I have resisted.

Aileen