Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello All... I'm in the process of getting a new endo- I see them in Feb but I have been struggling with hypo symptoms. Called my regular doctor and begged for labs, after some convincing because I had completed labs so recently, she ordered them. I was taking 5 mg of MM daily- dividing the dose to two 2.5 mg a day, which my doctor told me not to do but I was having hypo symptoms stronger after a full dose and you all suggested I split up the dose. After labs, my regular doctor told me to keep on my meds as directed (there was no way I was doing that), I contacted my previous endo and he told me to take a day off of meds and then reduce down to 2.5 mg a day. Ordered me new pills so I could divide more accurately. I'm taking more than one day off of MM- maybe I'll start my meds tomorrow or Saturday morning (I stopped taking them Tues night) what do you think? When should I start my meds? What do you think of my labs?
TSH
Aug 27: Less than 0.01
Sep 26: 0.02
Nov 14: 9.2 (reduced to 10 mg from 20 mg MM)
Nov 30: 11.8 (reduced to 5 mg MM)
Dec 24: 2.9 (started dividing dose- 2.5 2x day)
Jan 15: 6.2
Thyroxine,Free(S)
Reference Range: 0.8-1.8
Aug 27: 1.1
Sep 26: 1.1
Nov 14: 0.7
Nov 28: 0.7
Dec 24: 1.1
Jan 15: 1.0
Triiodothyronine(S)
Normal range: 80 - 190
Sep 26: 111
Nov 14: 92
Dec 24: 113
Jan 15: 96
TSH
Aug 27: Less than 0.01
Sep 26: 0.02
Nov 14: 9.2 (reduced to 10 mg from 20 mg MM)
Nov 30: 11.8 (reduced to 5 mg MM)
Dec 24: 2.9 (started dividing dose- 2.5 2x day)
Jan 15: 6.2
Thyroxine,Free(S)
Reference Range: 0.8-1.8
Aug 27: 1.1
Sep 26: 1.1
Nov 14: 0.7
Nov 28: 0.7
Dec 24: 1.1
Jan 15: 1.0
Triiodothyronine(S)
Normal range: 80 - 190
Sep 26: 111
Nov 14: 92
Dec 24: 113
Jan 15: 96
"I flatly refused to have either surgery or RAI, and I am certainly glad I took that route. I also flatly refused to take more MMI than I needed, especially when I found out that I could get away with it.* I agree with CD--I distrust nearly every doctor's ability to adequately supply replacement hormone, and I don't want to get lost in the wilderness without thyroid.
"Graves' is an autoimmune problem that the thyroid just happens to be involved it. Autoimmune diseases are incurable at the present time.
"My endo #2, who is much better than endo #1 but far from ideal, sounded like he was trying to give me hope by saying that "20% of Graves' patients go into remission in the first two years of treatment." I think the odds are terrible.
"Still, each of us has slightly different responses, and possibly different aspects to our condition. For me, much to my endo #2's surprise, my thyroid levels decreased when I decreased my MMI dose. I felt like the antibodies would only decrease when I was in the more optimal portion of the normal range. I suppose that is in the upper third, at least.
"I am now off the MMI and experiencing hypO thyroid symptoms: Tired, cold at 75 deg. F room temperature, brain fog, etc. I intend to fight hard at my next appointment to get my endo to give me supplementation until my thyroid is optimal. If he won't do that, I will go elsewhere for another second opinion, either my reg. doc. or possibly to a naturopath.
"*For the record, this is how I dealt with my MMI:
1. I would take the pill or pills at night, not in the morning, because I could deal with lower thyroid levels as I slept. (It may also have helped my lab numbers show how low I was, when I got tested the next day.)
2. If I had something very important going on the next day, and if I would not be getting labs done within the next 2 to 4 weeks, I would "skip" a day's dose so I could function properly the next day.
3. After I skipped a dose or doses, I would tell the doctor. If my labs turned out well, (which they did,) my doctor had to accept the fact that it was good, or at least not harmful, that I skipped the doses.
4. After finding out that I could get away with it on that level, I made a regular plan of decreasing my dose somewhat. I started by skipping one pill every Monday. I was totally honest with the doctor, after-the-fact.
5. After each appointment with the doctor, if he didn't decrease my dose, I did.
6. If he decreased my dose, I would follow his instructions until I started feeling hypo again, then, if I still had 4 weeks or more to my next blood draw, I would decrease my dosage again myself, reporting again at the next appointment.
"If there is anything I would have done differently, it would have been to obtain copies of my labs as I went along. I have ordered back copies now, but haven't received word that they have been prepared for me. I will call them, I guess."