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...
I had suffered hypothyroid symptoms for as long as I remember, but was not treated, not even tested until I was over 40.
Near my 60th birthday in July 2008, my OB/gyn found my TSH was at 0.01, if I remember correctly--but I was unable to get copies of labs to document this or some other early experiences. A subsequent test by a family doctor showed my TSH at 0.01 and my FT4 at 1.91 [range 0.8-1.8]. He wanted me to see him again and discuss it but I was confused and thought he crossed that part out of the letter he sent me, when he really had it highlighted. I didn't return to him until after my long-term double vision worsened dramatically and I went to a neuro-ophthalmologist who diagnosed me with Graves' Disease in May 2009.
I was treated with MMI by Endo #1 from June 2009 to March 2010. He started me with 30 mg MMI telling me to decrease the dose to 20 mg after a month. There was more drama, but mostly I was in hypo hell, but he gradually lowered my dose until I was at 12.5 mg. When he decided to keep me on that level at the end of March, I rebelled and weaned myself off of it altogether. I had a pleasant summer, even getting my thyroid tested, but cancelled my endo appointment when my blood test turned out to show high thyroid levels.
Finally, I was coerced into seeing an Endo again starting Sept 2010. Endo #2 treated me better than the first one starting out at 5 mg MMI and building up from there, again to 12.5 mg. by mid Feb. 2011.
That was when the turning point occurred:
I am no stranger to prayer, but at that time I was particularly desperate and told the Lord I would put up with anything if it was right and good for some reason, being confident of His perfect love and great wisdom.
I was tested:
02/15/2011 [Taking 12.5 mg MMI, recorded in email to friend the next day.]
TSH 0.01 (0.40-4.50 MIU/L) [low]
Free T4 1.3 (0.8-1.8 NG/DL) [in range, down from 2.3 in 2 mo.]
Free T3 3.4 (2.3-4.2 pg/mL) [in range, down from 4.8 in 2 mo.]
(The next day:)
02/16/2011, I Fell face down in the street, getting scrapes, scratched glasses and a bloody nose, but no broken bones. My appt. with the endo was the next day, on the 17th. He asked me about why I fell, but I was unable to tell him. I just said "It's really hard to be aware of what is going on when I have this brain fog." I had tried to tell him about the brain fog before, but he never seemed to understand. This time he lowered my dose to 10 mg MMI daily, or 70 mg weekly]
2.5 months later I had my next blood test:
05/03/2011, I wrote in my journal that I felt too good and worried that I was hyper. [on 70 mg weekly]
TSI 529 (should be less than 140%) [previously high]
TPO 57 (less than 35) [down from 246 in about 7 mo.]
Thyroglobulin AB less than 20 (less than 20) [down from 23]
TSH 3rd generation, 2.53 (0.40-4.50 MIU/L) [in range, up from 0.01 in 10 weeks]
Free T4 1.0 (0.8-1.8 NG/DL) [in range, down from 1.3 in 10 weeks]
Free T3 2.7 (2.3-4.2 pg/mL) [in range, down from 3.4 in 10 weeks]
[On 5/10/11, ( after my appt. the following week) I wrote: (Endo #2) is happy. My thyroid is completely in the middle of the normal range. I reminded him, though, that he was going to let me be in the upper-normal range, so he has said to decrease my meds to: just one pill on Mondays and Fridays while staying with the two pills on other days. [ie. 5-10 mg totaling 60 mg per week]
2 months later:
07/06/2011 (on 60 mg weekly)
TSH 5.18 (0.40-4.50 MIU/L) [high, up from 2.53 after 2 mo.]
Free T4 1.1 (0.8-1.8 NG/DL) [in range, up from 1.0 after 2 mo.]
Free T3 2.3 (2.3-4.2 pg/mL) [at bottom of range, down from 2.3]
-- Dr. office called and instructed me to lower my daily MMI dose (did not write down this amount)
I think this is interesting for a few reasons:
1- It seems to me that my TSH rose when I decreased the MMI when, according to the doctor's expectations, I should have gone more hyper.
2- It shows my TSH rose by 5.08 in just 4.75 months.
3- It showed me that I definitely feel better when my TSH and not the TSI is helping to create the FT3.
4- It gave me the idea that the TSI antibodies might subside in response to higher (more nearly adequate or optimal) free T3 levels.
After that point, I really took my health into my own hands as much as possible. If the doctor wouldn't lower my dose, I did it myself, being very careful not to lower it too much or too soon before a scheduled blood test. I was always honest after the fact, and the doctor didn't seem to mind because I always stayed in the normal range per TSH. I wasn't entirely happy, though because my FT3 dropped below normal as I was going off the MMI altogether in December 2012.
Getting onto a positive treatment with LT3 is another story, but this was the turning point with the Graves' Disease.
Near my 60th birthday in July 2008, my OB/gyn found my TSH was at 0.01, if I remember correctly--but I was unable to get copies of labs to document this or some other early experiences. A subsequent test by a family doctor showed my TSH at 0.01 and my FT4 at 1.91 [range 0.8-1.8]. He wanted me to see him again and discuss it but I was confused and thought he crossed that part out of the letter he sent me, when he really had it highlighted. I didn't return to him until after my long-term double vision worsened dramatically and I went to a neuro-ophthalmologist who diagnosed me with Graves' Disease in May 2009.
I was treated with MMI by Endo #1 from June 2009 to March 2010. He started me with 30 mg MMI telling me to decrease the dose to 20 mg after a month. There was more drama, but mostly I was in hypo hell, but he gradually lowered my dose until I was at 12.5 mg. When he decided to keep me on that level at the end of March, I rebelled and weaned myself off of it altogether. I had a pleasant summer, even getting my thyroid tested, but cancelled my endo appointment when my blood test turned out to show high thyroid levels.
Finally, I was coerced into seeing an Endo again starting Sept 2010. Endo #2 treated me better than the first one starting out at 5 mg MMI and building up from there, again to 12.5 mg. by mid Feb. 2011.
That was when the turning point occurred:
I am no stranger to prayer, but at that time I was particularly desperate and told the Lord I would put up with anything if it was right and good for some reason, being confident of His perfect love and great wisdom.
I was tested:
02/15/2011 [Taking 12.5 mg MMI, recorded in email to friend the next day.]
TSH 0.01 (0.40-4.50 MIU/L) [low]
Free T4 1.3 (0.8-1.8 NG/DL) [in range, down from 2.3 in 2 mo.]
Free T3 3.4 (2.3-4.2 pg/mL) [in range, down from 4.8 in 2 mo.]
(The next day:)
02/16/2011, I Fell face down in the street, getting scrapes, scratched glasses and a bloody nose, but no broken bones. My appt. with the endo was the next day, on the 17th. He asked me about why I fell, but I was unable to tell him. I just said "It's really hard to be aware of what is going on when I have this brain fog." I had tried to tell him about the brain fog before, but he never seemed to understand. This time he lowered my dose to 10 mg MMI daily, or 70 mg weekly]
2.5 months later I had my next blood test:
05/03/2011, I wrote in my journal that I felt too good and worried that I was hyper. [on 70 mg weekly]
TSI 529 (should be less than 140%) [previously high]
TPO 57 (less than 35) [down from 246 in about 7 mo.]
Thyroglobulin AB less than 20 (less than 20) [down from 23]
TSH 3rd generation, 2.53 (0.40-4.50 MIU/L) [in range, up from 0.01 in 10 weeks]
Free T4 1.0 (0.8-1.8 NG/DL) [in range, down from 1.3 in 10 weeks]
Free T3 2.7 (2.3-4.2 pg/mL) [in range, down from 3.4 in 10 weeks]
[On 5/10/11, ( after my appt. the following week) I wrote: (Endo #2) is happy. My thyroid is completely in the middle of the normal range. I reminded him, though, that he was going to let me be in the upper-normal range, so he has said to decrease my meds to: just one pill on Mondays and Fridays while staying with the two pills on other days. [ie. 5-10 mg totaling 60 mg per week]
2 months later:
07/06/2011 (on 60 mg weekly)
TSH 5.18 (0.40-4.50 MIU/L) [high, up from 2.53 after 2 mo.]
Free T4 1.1 (0.8-1.8 NG/DL) [in range, up from 1.0 after 2 mo.]
Free T3 2.3 (2.3-4.2 pg/mL) [at bottom of range, down from 2.3]
-- Dr. office called and instructed me to lower my daily MMI dose (did not write down this amount)
I think this is interesting for a few reasons:
1- It seems to me that my TSH rose when I decreased the MMI when, according to the doctor's expectations, I should have gone more hyper.
2- It shows my TSH rose by 5.08 in just 4.75 months.
3- It showed me that I definitely feel better when my TSH and not the TSI is helping to create the FT3.
4- It gave me the idea that the TSI antibodies might subside in response to higher (more nearly adequate or optimal) free T3 levels.
After that point, I really took my health into my own hands as much as possible. If the doctor wouldn't lower my dose, I did it myself, being very careful not to lower it too much or too soon before a scheduled blood test. I was always honest after the fact, and the doctor didn't seem to mind because I always stayed in the normal range per TSH. I wasn't entirely happy, though because my FT3 dropped below normal as I was going off the MMI altogether in December 2012.
Getting onto a positive treatment with LT3 is another story, but this was the turning point with the Graves' Disease.
[on 07/12/2011 I wrote to (my husband): I found out why (the doctor) decided to decrease my dose of pills: Bottom line: I tested BELOW the whole normal range on my thyroid. He asked how I felt. I said, "Ummm..." He asked if I was sleeping more than normal. I said "yeah, or dragging through the day." He told me my thyroid is now low. I asked, "Even below the normal range?" and he confirmed that it was. He said, "That is not necessarily bad, but may mean my thyroid is stabilizing," and asked again how I felt. I told him I felt a lot like I did for the last twenty five years. He asked if I had any significant hair loss. I said, "It seemed like a gradual thing over the last twenty five years when I tested normal thyroid." He said the tests were probably wrong.
Somewhere along the line he asked if I had received the call from his office about altering my dose. I confirmed I had. He quizzed me on what I understood it to be. I told him. He confirmed that was what he ordered, and said he could lower it even more. I said, "I really need that." He said I should now take only one pill a day five days a week and two pills on the other two days. ...'
I also wrote to my friend: The latest news with me is that I just had my Endocrinologist appt. and found out that my last blood test showed I am now Hypo-thyroid! On the plus side, my doctor thinks my thyroid is stabilizing and he has lowered my anti-thyroid drug from 60 mg per week to 45 mg per week.]
The whole thing I was trying to show was that even just looking at the TSH, which really doesn't show the whole picture, it should be obvious that there can be quite a large change in a matter of just a few months. So I should never have let the doctor say that frequent testing is unnecessary.