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...
Hey everyone. I've been off meth for well over 6 months now. I've been feeling sooo hypo though. Tired, no libido, dry skin, constipation, memory loss, and I am always so incredibly cold, even when I stand directly infront of the heater. Here are my latest labs, though. I guess its a little weird that my tsh and ft4 are both low-normal? And my TPO antibodies are still a little high, though not the TSI. I don't know what to do! I just had the GP order the labs because I didn't want to drive 1.5 hours to go to the endo. I have a feeling the endo will not want to do anything anyway, since the labs are within range.
Anyone have any knowledge of pituitary problems? In trying to look up my labs, I kept stumbling on that. It looks like that would make sense of a lot of my symptoms, including a couple more that I never even thought were symptoms of anything.
I have to admit that the always freezing is better than the constantly hot and sweaty that I was before being diagnosed with the graves, but its still no fun. And my husband would argue that the no libido is the worst, of course.
I actually just saw a gyn dr this morning who is participating in a study for the drug flibanserin. They're studying it to see if it increases women's libido. I won't start the placebo or the drug for a month as they did exams and labs first. They are supposed to be checking all hormone levels, including prolactin. If those come back normal, I don't know what to do!
Anyone have any knowledge of pituitary problems? In trying to look up my labs, I kept stumbling on that. It looks like that would make sense of a lot of my symptoms, including a couple more that I never even thought were symptoms of anything.
I have to admit that the always freezing is better than the constantly hot and sweaty that I was before being diagnosed with the graves, but its still no fun. And my husband would argue that the no libido is the worst, of course.
I actually just saw a gyn dr this morning who is participating in a study for the drug flibanserin. They're studying it to see if it increases women's libido. I won't start the placebo or the drug for a month as they did exams and labs first. They are supposed to be checking all hormone levels, including prolactin. If those come back normal, I don't know what to do!
12/23/09
TSH .90 (0.34-5.60)
FT4 0.74 (0.58-1.64)
FT3 3.0 (2.0-3.5)
TSI
TPO 30.1 ( range is less than 9)
Do you know anything about the nodules of yours? Did you ever get the FNA done on these?
Have you been diagnosed with Hasimoto's?
{{{hugs}}}
I empathize :(
I truly do not believe you are having pituitary problems.
First off, even though you are off meds, it is not uncommon for the TSH to stay low when you have Graves' disease.
Elaine Moore confirmed to me that many people, like you and me, are in remission (off meds and euthyroid) and have low or suppressed TSH for YEARS afterwards.
It's an antibody thing and I will gladly explain the particulars if you'd like - just let me know :)
Also, It is not uncommon for our levels to fluctuate for at least a year after going off ATD's.
Have you looked at your diet?
If you are eating high iodine foods, that can contribute to lower FT4 levels.
If you are eating goitrogens such as the foods on this link, they can also lower your FT4 levels.
http://en.wikipedia.org/wiki/Goitrogen
If it's too hard for you to deal with your current state, you might ask your doc to Rx a small T4 replacement dose.
So, I came off the meth in the summer. The labs were really similar to now (tsh was a little higher at 1.18 and ft4 slightly higher at .62) I still felt hypo then. In fact, I've been feeling hypo for quite a while.
They didn't think it was hashimoto's back in the beginning because my uptake was so high.
But, who knows! I feel like I just run around in circles with the doctors!
And, yes, I would love to hear the particulars about the antibodies! Thanks!
About diet, I know I don't eat particularly well. I hardly have any appetite at all, really. I usually don't eat anything until lunch, then its a few bites of whatever the kids are having. I very rarely eat anything on the list of goitrogens.
Your TPO isn't all that high at all so I don't think you have Hashi's.
And, now that you've clarified your starting TSI of 271, it is clear to me that you have Graves' and you are now not producing the TSI antibodies due to your current less than 1.
I'm going to bore you with some antibody stuff.
When we have Graves', we actually produce antibodies that do different things at different stages of our journey.
In the beginning, our antibodies are stimulating our thyroids to produce too much thyroid hormone - those antibodies are measured with the TSI blood test - your high level confirms Graves.
As we progress through the disease, our antibodies can also become blocking wherein they block TSH (reducing it) and also lower our FT4 levels.
I suspect that's where you are at now - your TSI is less than 1, your TSH is low and so is your FT4 level.
I do believe I've read posts of Elaine Moore saying that nodules can disappear as part of the progression of the disease.
You might want to address your concerns with Elaine Moore on the Q&A forum of her website - you might be familiar with it already but, just in case....
www.elaine-moore.com
Best of luck to you!
OK, well, after reading your latest post, things are even clearer.
You were severely hyPO when you stopped meds....your FT4 was scraping the bottom end of the range and your higher TSH clearly confirms this.
I'm sure you know that, most often, when our FT4 drops down too low for our body's needs, our pituitary gland responds to this and produces more TSH to stimulate the thyroid to make more FT4, etc.
So, with you being SO hyPO when you stopped meds, I take it as a good sign that your FT4 is slowly creeping up.
Your poor body was in slow-motion with such a low FT4 when you stopped meds......I'm sure you're familiar with the term "hyPOhell".
I speak from experience....it takes a LONG time to climb out of hyPOhell.
The longer we're in it, the longer it takes to climb out.
With SUCH a low FT4 at the time you stopped meds, I'm not surprised to see where you're at now :(
But, at least you're not swinging hyPER so I bet your remission will "stick".
Did your FT4 ever get to mid-range during your treatment?
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
This concept applies to anyone with thyroid disease.
I did post to elaine and she said that 20% do spontaneously move into hypo temporarily.
But then I came across the pituitary thing and started wondering about that. I didn't want to bother her again, she seems so busy!
So, what is my next step? My marriage is really suffering from the lack of libido. The obligation sex just isn't doing it, lol.
I believe it takes 6-8 wks for the full effects of the dose to be realized.
You'd definitely want to be sure to lab every 6 wks. to make sure you FT4 doesn't go too high.
What pituitary thing are you talking about?
Didn't read them all but, in every one I did read, it is clear to me that you were overmedicated.
If you read that thread I wrote about "best place FT4", you will understand why you had all those symptoms you did - arggh!
Yet another victim!
I was one, too - I changed docs but not frequently enough...I definitely "dated the wrong guy for too long" with endo #2 and was often hyPO.....by the time I found a with-it doc, it was one month after I took myself off 1.25mg meth 'cuz I was in my worst-ever visit to hyPOhell....turns out, I had entered remission.....s-o-o-o-o-o, I am all too familiar with hyPO symptoms :(
regarding the pituitary thing, one of the symptoms I have, but never knew it was a symptom, is galactorrhea (milk leaking out of breasts). Its not a lot, it basically just dries up on the nipple). When I was seeing low TSH and low FT4 referencing pituitary problems, I saw that symptom and realized maybe that was a concern.
My FT4 started out high, above range when all of this first started, and rising, but then within less than two months started getting pretty low. I think that would've been around the time that I started taking meth, actually (and not long after the uptake scan). Its kind of hard to track it, since my ranges vary between tests, but here they are:
8/29/08
1.84 (.58-1.64)
9/24/08
1.79 (.61-1.25)
10/03/08
2.25 (.61-1.25)
11/21/08
0.80 (.58-1.64)
1/12/09
0.56 (.58-1.64)
2/19/09
0.64 (.58-1.64)
2/25/09
0.62 (.70-1.80)
4/8/09
0.64 (.58-1.64)
7/10/09 (4 weeks off meds)
0.62 (.70-1.80)
12/23/09
0.74 (.58-1.64)
That was a sudden drop in FT4, wasn't it? I hadn't really notice that sudden drop.
I am probably wasting my time going back to the endo, though. Look at how low my FT4 was throughout all those months, and I was complaining of drastic hypo symptoms and he kept me on the meth and didn't even want to reduce!
I have been thinking about going to see an internist here in town and see if I can get anywhere with him. Maybe I should try that?
{{{hugs}}}