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...
Oops, missed a "less than" sign... reposting with full labs, below:
Hello ladies!
I'm hoping to get some insight/wisdom from people who have been in remission and gone hypo, or from anyone who knows about this issue.
I've been off of MMI and in remission for about a year now. Since June, I've been having symptoms of what I suspect is mild hypothyroidism. (Mind fog, occasional palpitations, fatigue, etc.) However, since my symptoms have been on/off and not clear-cut, I haven't (ever) had any replacement hormone.
However, in the past few weeks my symptoms have been becoming more obvious. At first I thought it might be something else (like a food sensitivity), because the symptoms did not manifest in the same way as when I was previously hypo (when I was extremely overmedicated on MMI).
My current symptoms:
- raised hives on my back, a few times each week. always at night after dinner, itchy, disappear after a few hours.
- extremely sleepy after meals
- requiring a lot of sleep (12+ hrs)
- overall low energy
- upset stomach
- achy muscles in neck and shoulders (they feel like I'm about to have a Charlie horse)
My questions:
1) Does the fact that my TSH has been slowly creeping up support that I'm going hypo, as I suspect? I forget if how long TSH is suppressed in GD after remission.
2) Since my FT4 is holding steady at 1.2 and my symptoms are increasing, I'm considering finally biting the bullet and experimenting with a very small dosage of replacement hormone to see if it helps. I don't know much about it. Do you ladies recommend a specific brand of levothyroxine? Have any of you tried natural desiccated thyroid?
3) In your experience, have there been things you've done to improve your hypothyroidism? I know Elaine Moore said that sometimes it can be temporary. Do you have any tips?
Thank you so much for your wisdom!
-Lu
My labs:
Ranges
Free T4 0.81-1.54
TSH 0.35-4.0
T3 58-159
TSI less than 140
11/16/2012
Free T4 1.2
TSH 1.34
T3 97
*** 1.25mg of MMI every 3 days.
12/10/2012
Free T4 1.5
TSH 0.55
T3 99
*** No medication.
1/15/2013
Free T4 1.4
TSH 0.22
T3 107
*** No medication.
3/5/2013
Free T4 1.3
TSH 0.38
T3 95
TSI less than 89
*** No medication.
6/4/2013
Free T4 1.2
TSH 0.39
T3 93
*** No medication.
6/19/2013
Free T4 1.3
TSH 0.52
T3 103
*** No medication.
9/3/2013
Free T4 1.2
TSH 0.62
T3 97
*** No medication.
10/3/2013
Free T4 1.2
TSH 0.96
T3 103
*** No medication.
Hello ladies!
I'm hoping to get some insight/wisdom from people who have been in remission and gone hypo, or from anyone who knows about this issue.
I've been off of MMI and in remission for about a year now. Since June, I've been having symptoms of what I suspect is mild hypothyroidism. (Mind fog, occasional palpitations, fatigue, etc.) However, since my symptoms have been on/off and not clear-cut, I haven't (ever) had any replacement hormone.
However, in the past few weeks my symptoms have been becoming more obvious. At first I thought it might be something else (like a food sensitivity), because the symptoms did not manifest in the same way as when I was previously hypo (when I was extremely overmedicated on MMI).
My current symptoms:
- raised hives on my back, a few times each week. always at night after dinner, itchy, disappear after a few hours.
- extremely sleepy after meals
- requiring a lot of sleep (12+ hrs)
- overall low energy
- upset stomach
- achy muscles in neck and shoulders (they feel like I'm about to have a Charlie horse)
My questions:
1) Does the fact that my TSH has been slowly creeping up support that I'm going hypo, as I suspect? I forget if how long TSH is suppressed in GD after remission.
2) Since my FT4 is holding steady at 1.2 and my symptoms are increasing, I'm considering finally biting the bullet and experimenting with a very small dosage of replacement hormone to see if it helps. I don't know much about it. Do you ladies recommend a specific brand of levothyroxine? Have any of you tried natural desiccated thyroid?
3) In your experience, have there been things you've done to improve your hypothyroidism? I know Elaine Moore said that sometimes it can be temporary. Do you have any tips?
Thank you so much for your wisdom!
-Lu
My labs:
Ranges
Free T4 0.81-1.54
TSH 0.35-4.0
T3 58-159
TSI less than 140
11/16/2012
Free T4 1.2
TSH 1.34
T3 97
*** 1.25mg of MMI every 3 days.
12/10/2012
Free T4 1.5
TSH 0.55
T3 99
*** No medication.
1/15/2013
Free T4 1.4
TSH 0.22
T3 107
*** No medication.
3/5/2013
Free T4 1.3
TSH 0.38
T3 95
TSI less than 89
*** No medication.
6/4/2013
Free T4 1.2
TSH 0.39
T3 93
*** No medication.
6/19/2013
Free T4 1.3
TSH 0.52
T3 103
*** No medication.
9/3/2013
Free T4 1.2
TSH 0.62
T3 97
*** No medication.
10/3/2013
Free T4 1.2
TSH 0.96
T3 103
*** No medication.
It sounds like maybe your FT4 is doing okay, but if you have a low T3 problem then I am seeing where taking something to help the T3 may be need to come up. Such as Cytomel which is a T3 med.
{{{hugs}}}
Thanks for your insight. I've asked my endo to do a FT3 not T3 in the past, but he wouldn't do it because he "didn't think it was necessary"!
What makes you think my issue may be a T3 problem?
I would insist to the doctor to order the Free T3 along with your Free T4 and TSH the next time. If he won't then I say either order labs on your own as a self pay which you can get the three tests done for about $85 minus a discount when the code 12345 is used. Get this done through healthcheckusa.com
I would also find another doctor.
Elaine Moore at her website has a lot of good articles and info on various thyroid issues which may benefit you.
elaine-moore.com
{{{hugs}}}
I'll definitely try pushing my endo again for a FT3 for the next set of labs. Re: my current endo, yes, I know... I really want to find someone a lot better, but I'm in an HMO so I don't have many options. He's actually a lot better than my previous endo, in that he is okay with me calling the shots a lot of the time. (When I was on MMI, we went by my dosing decisions, and he just okay'd them.) Unlike my previous endo who overmedicated me for months even though I alerted him that something was wrong and only tested me every 3 months. After it was confirmed I was VERY hypo at my next labs, he suddenly became unreachable .... So this guy is a lot better compared to the previous loser (which actually isn't saying much), but I agree that I should find someone better eventually.
Thanks for the info for getting the labs done on my own. That's good to know just in case I ever need to order tests my doc won't.
Yes! Elaine Moore is awesome. I have her GD book and her site is regular reading for me. I love her!
My endo just sent me a note about my recent labs, saying that he thinks they are fine and that my symptoms are probably not thyroid related. But no info on what to do IF they aren't thyroid related. What a help that is!
Anyways, I'm still debating if I should request replacement hormone or not. (I actually got my endo to agree to trying some a couple months ago, but then I decided to wait and see how I felt.) My thinking is that a minimum dosage shouldn't hurt and if it makes me feel better, it's a win! It's just hard to bite the bullet since my current labs don't look bad, and my symptoms can be on and off, so I'm having some self-doubt.
Are there any other ladies on the board who are in remission + hypo?
I learned in May that I have antibodies for both GD and HT. (TSI and TPO ab are high, but my Tg ab was low.)
I've had treatment with L-T3 for sub-optimum TT3 levels (low in-range T3, mid-range FT4, and almost below range TSH) since June, and for the last week or so, L-T4 has been added to my regimen.
Actually, my last two tests have been similar to yours, except that my doctor tested the FT3 instead of the TT3.
Thank you so much for your reply!
Our situations actually sound very similar, as I stopped taking MMI last November and this June was when I started having weird hypo symptoms again.
It'a also interesting that you have both TSI and TPO. My TPO was tested back when I was diagnosed a few years ago, and it was less than 3. That was the only time it was tested, so I don't know if I've developed TPO since then. It sounds like you have a very good doctor!
What were your hypo symptoms like earlier this year? How low did your levels get before you started replacement hormone? Are you feeling a lot better on the replacement hormones?
"What were your hypo symptoms like earlier this year?"
From the time I went off the MMI in December last year, I felt pretty horrible. I was always the coldest person in a group. I was barely functional about 20% of my day, and only when I got myself very "riled up". I slept much of the time, but not often through the whole night. Even if I was awake, I was often zoned out.
"How low did your levels get before you started replacement hormone?"
When I stopped the MMI my FT3 was slightly below the range, and it fluctuated a little up into the range and back down. A new Endo in May said she didn't think the free T3 test was a good assay, and insisted I be tested for total T3, which she then discredited as accurate of free T3, because I am post-menopausal, so "the lack of estrogen would probably make the percentage of bound T3 go down and free T3 go up."
My FT4 was always very near mid-range.
My TSH fluctuated the most. It dropped lower with every test after going off the MMI, until it was borderline hyperthyroid when I saw the new endo in May. In June, my PCP treated me from the same lab test results I had from May, and tested me 2 months later.
"Are you feeling a lot better on the replacement hormones?"
Yes. I feel more normally hypothyroid, but not yet ideal. I'm not so terribly cold anymore, and I can usually think clearly, I think (Ha Ha.) I am also usually more able to function at normal tasks like fixing dinner and washing dishes. It can still be improved, but it is much better than it was, and I'm glad to be alive. :)