# Considering going off meds



## dlo1725 (Oct 30, 2011)

Diagnosed with graves August of 2011. Went on Methamezole, 20mg per day and heart palps stopped, itching stopped, insomnia went away and brain fog vanished.

Endo dropped my dosage to 15mg per day in October when reading became spot on normal and thyroid eye disease kicked in. Would never have treated my hyper if I had been forewarned about the possibility of TED.

Endo recently reduced dosage to 10mg per day as recent tests revealed I was now clearly below normal.

I have to say that in retrospect I felt better during my hyper days. I feel out of sorts, tired, chubby, dizzy...just rotten. My eye disease is overwhelming and it is my understanding that TED would not have happened if i didn't treat the Graves.

I am considering stopping my meds and loading up with flax seed oil and selenium.


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## Andros (Aug 26, 2009)

dlo1725 said:


> Diagnosed with graves August of 2011. Went on Methamezole, 20mg per day and heart palps stopped, itching stopped, insomnia went away and brain fog vanished.
> 
> Endo dropped my dosage to 15mg per day in October when reading became spot on normal and thyroid eye disease kicked in. Would never have treated my hypo if I had been forewarned about the possibility of TED.
> 
> ...


Little confused here; are you on anti-thyoid meds or thyroxine replacement?

Can't say I agree about the GED/TED. You can't stop a speeding train. Have you had antibody's tests?

There are certain antibodies and immunoglobulins that point to the prospect of developing TED if things are not brought under control w/medical intervention or not. It's like a crap shoot. Depends on how advanced your Graves' is.

TSI (thyroid stimulating immunoglobulin) for example will attack the orbits.

http://www.hopkinsmedicine.org/endocrine/graves/Answer.asp?QuestionID=22


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## dlo1725 (Oct 30, 2011)

Sorry for the confusion. I edited my post as I stated I was hypo; I am hyper and I am taking anti-thyroid meds. My TSH was tested at the same time T3 and T4 were tested. TSH reading was at 4 and had not moved after 3 months on meds. At my last endo appointment I was advised that all readings were normal. After my blood test in January my doctor called and stated tests showed I was clearly below normal.

I can only describe the way I feel as "walking under water".


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## Prairie Rose (Nov 17, 2011)

Oh gosh, I totally understand!

I too felt WAY better before going on the hyper meds.

My endo is currently cutting me back on dosage because like you, I am getting almost hype. And I do NOT like it one bit, might I add!

I MISS my energy!

On the Eyes, however, as Andros stated and as docs have told me, it was likely happening anyway and is actually not caused by the hyper--but rather is caused by the autoimmune disease that also caused the hyper.

Another thing--I was told that the TED had most likely already been in the works for a while before me physically noticing it.


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## desrtbloom (May 23, 2010)

TED will occur regardless of treating Graves. TED has a mind of its own. You can have your Graves under control and still have TED issues. If you don't treat your Graves properly you run the risk have having more serious health problems than TED, you could have a massive heart attack, organ failure, etc. etc. I know it is very disheartening and upsetting to be feeling like crap, believe me I have been there, but the alternative could be life threatening. It's important to have a really great opthamologist who is familiar with Graves and TED to help you get it more under control.

Unfortunately, thyroid disease is a journey and everything takes time. I am a Type A person and wanted eveyrthing fixed NOW. It ain't gonna happen with Graves.

With respect to your blood levels. Not everyone feels good at the same levels. I feel best with my TSH below one, while others might need it around two. One person's "normal" may not be YOUR normal.

Hang in there!!! :hugs:


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## Mike C (Mar 14, 2012)

Howdy...benn there done that.... Let's chat on this. First the anti thyroid meds have a rather long latency and slow build up time . This means it takes a while for the changes in medication levels to work out a balance in your system. I was on them for four years. Two in some people they can affect your moods.

The dropping off anti thyroid meds will push you back to being hyper that is if you do not do the rai or surgery thingy.

Hypothyroidism is not fun. It is like being in a fog and down and cranky and feeling lousy. But talk to your freinds and folks close to you when you were hyper.. That was not fun for them.

It took me four years to go for rai it tookafewmore for it to fully work aaNd have my THYRIOD REPLACEMENT LEVEL off. No fun. But it was worth it.

Work withe your doc. If you get to feel the doc is not doing a good job go get. A second opinion bringing all your records with you. If you get the same answer then it may be the graves talking. I lost Two relationships over this. Not fun. Kids did not like me much for a while either. Went to a shrink to figure it out. It is surprising how much that little gland can do.


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## dlo1725 (Oct 30, 2011)

Interesting stuff Mike. I was very cranky and had a bad temper when I was hyper. Insomnia was awful as well.

I do have more energy now and the heart palps and nasty temper have diminished. I think I may stay on the Methezimole for a while longer as it is my understanding that my eyes will not get better if I drop the meds.

Thanks for sharing your story.


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## Andros (Aug 26, 2009)

dlo1725 said:


> Interesting stuff Mike. I was very cranky and had a bad temper when I was hyper. Insomnia was awful as well.
> 
> I do have more energy now and the heart palps and nasty temper have diminished. I think I may stay on the Methezimole for a while longer as it is my understanding that my eyes will not get better if I drop the meds.
> 
> Thanks for sharing your story.


I am sorry for your eyes and I do hope that you are under the care of a Board Certified Ophthalmologist who has experience treating GED/TED (Grave's Eye Disease/Thyroid Eye Disease) for much can be done to stave this off and to help you feel better.


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## dlo1725 (Oct 30, 2011)

Andros:

I am seeing an ophthalmologist who specializes in GED/TED. What route did you take to stave off the affects of this disease and feel better?

I am currently using steroid eye drops 4 times daily and have an appointment on Wednesday with the eye doctor to check the pressure behind my eyes.

The drops seemed to be working a little bit as the swelling in and below the eyes is not as pronounced. I know the drops cannot be used for long periods of time due the risks of cataract and glaucoma.

Lee


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## Andros (Aug 26, 2009)

dlo1725 said:


> Andros:
> 
> I am seeing an ophthalmologist who specializes in GED/TED. What route did you take to stave off the affects of this disease and feel better?
> 
> ...


I had a very advanced case of GED. So, the Opthalmolgist Rx'd radiation (2000 RADS), 3 times a week for 6 weeks concurrent with oral prednisone. I think I had 60 mg. of that per day if I recall correctly.

This is only advisable after you have the thyroid removed. The thyroid being the main source of the attack.

I feel for you; I really do.


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## mifis (Mar 27, 2012)

I was diagnosed with Graves in June 2009 and tried different "natural" approaches until I finally went on Tapazole in August 2009. Doctor prescribed 40mg/day which had me VERY hypo within 3 weeks. Let's just say I gained 20 pounds in 4 weeks. Not at all fun. He then took me off the Tapazole all together. I went hyper again within a couple of weeks and then he put me back on 5mg/day. That must have been in about October/November. I also felt like I was treading water and not quite breaking the surface. Left eye started to develop TED in December 2009 and TSH levels were still below normal range. I saw a neuroopthalmologist who didn't treat the TED as she said it was mild, but it sure was uncomfortable.

In February 2010 I took myself off the Tapazole. Endocrinologist said I would be hyper within a month or 2 and would need to have the thyroid destroyed via radioactive iodine. He said no choices were available at all.

Within a month of being off the Tapazole I was feeling much better and my TSH levels moved back up into the normal range. Within 2 months the TED had disappeared. Endo said I had a 3% chance of staying in remission for 12 months and lower over a 5 year period. He said "when, not if this comes back." I continued to have my blood checked every month for 6 months , then every 3 months, then every 6 months.

I am still in normal range over 2 years later and haven't seen the Endo for over a year. I am feeling very hopeful. I hope my story also gives someone else hope. Graves is an awful disease and is very misunderstood.

Personally, I believe my own instance of Graves was triggered by extraordinary stress and, as such, was to some extent self-limiting. I know that goes against the current medical wisdom. I just feel I was given such incorrect information by the doctors and they really don't understand this disease completely.

Best wishes to you all!


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## Andros (Aug 26, 2009)

mifis said:


> I was diagnosed with Graves in June 2009 and tried different "natural" approaches until I finally went on Tapazole in August 2009. Doctor prescribed 40mg/day which had me VERY hypo within 3 weeks. Let's just say I gained 20 pounds in 4 weeks. Not at all fun. He then took me off the Tapazole all together. I went hyper again within a couple of weeks and then he put me back on 5mg/day. That must have been in about October/November. I also felt like I was treading water and not quite breaking the surface. Left eye started to develop TED in December 2009 and TSH levels were still below normal range. I saw a neuroopthalmologist who didn't treat the TED as she said it was mild, but it sure was uncomfortable.
> 
> In February 2010 I took myself off the Tapazole. Endocrinologist said I would be hyper within a month or 2 and would need to have the thyroid destroyed via radioactive iodine. He said no choices were available at all.
> 
> ...












Good to have you here. And I hope you continue to stay in your quiet state.

Stress is a trigger for many autoimmune diseases.


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