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!
If you are so inclined, you might want to read a rant I wrote in the context of my journey - I just bumped it up for newcomers recently
http://www.dailystrength.org/c/Graves_Disease/forum/8386675-do-no-harm-hah
I feel for you!
I'm not familiar with the leaking milk symptom/pituitary thing and, if you could supply a link, I'd really like to read it.
I'm a bit of a science head and, when the Graves' concepts "clicked" for me, I've been able to embrace the true mechanisms of our thyroid (which actually "operates" within an axis which includes our hypothalamus (in the brain), our pituitary gland and our thyroid)
I'm willing to throw in my two cents :)
Again, with that "best place FT4" thread, it is quite true that things got to a point that I started Googling any new symptom and then hyPOthyroidism....it was always on one of "the lists".
I Googled "leaking milk hyPOthyroidism" - guess what? It's a symptom.
Many thyroid forum peeps told me that a GP, DO, internist or holistic doc was often better at treating Graves' than an endo.
I begged my GP to treat me - he looked at my thyroid labs and told me they were normal (in-range) - he was incredulous that I had SO many hyPO symptoms and, after I explained things to him, he told me I knew more about Graves' than he did - he was right :(
But, I checked out an internist that my 11-yr-post RAI nail tech sees and who told me this doc was the only, after several, that got her feeling right thyroid-wise. Mind you, my tech never looked/looks at her labs.
The internist understands all things Graves' - she told me "We know not to look at TSH in Graves' disease, it's useless".
And, as I told you previously, I met her a month after I entered remission.
I suggest you try a "non-endo" doc next.
Thank you for the links. It is so hard to find a good dr. I was sent to an endo in Louisville, KY first, hated her and found one over in Northern Ky (even though it was an extra 30 minutes for me over the already hour it was to Louisville!) I really liked him in the beginning, but when I told him I think we needed to reduce doseage, he didn't really listen. I actually ended up weaning myself off. Since I've still had so many of these hypo symptoms and I've been pretty miserable, I thought I should get some more labs done since it had been about 6 months. I figured it was no good going back to the endo so I just had my GP do it. I went in and told him I wanted to check it and I was telling HIM which labs I wanted ordered. Then, when I heard the lab girl calling to ask what the TSI antibody was, and heard them tell her it was the same as TSH, I corrected her and actually looked over her shoulder on her computer and showed her which lab to order! Then, when I finally got ahold of the GP nurse and asked for my results, she had no idea what they meant. She asked if I had a follow up appt, nope, and she said "okay well let us know if you need anything" LOL I guess I'll try this internist here in town. It says he has an interest in endocrinology, so we'll see how he does.
This is one of the places where I saw that low tsh and low ft4 may be pituitary
http://www.thyroid.org/patients/brochures/FunctionTests_brochure.pdf
and then this is one of the first sites that I saw the symptoms listed and noticed I had many of them (including the galactorrhea)
http://pituitary.mgh.harvard.edu/pitsympt.htm
I'm glad to be having my prolactin levels tested, just in case.
You know, I am set up to start this flibanserin study (libido study drug) next month, but I wonder if I should try getting my ft4 up first.
It is very clear to me that your doc must've been using your TSH for dosing decisions.
I won't deluge you with the info I provide newcomers to explain why this is wrong, nor tell you how your dosing should have progressed.....all water under the bridge.
You already have the link to StopTheThyroidMadness.com - that site has a bunch of info related to being hyPO.
So does this site:
http://www.thyrophoenix.com/index.html
I hope you can find yourself another doc that will look at your FT4 and FT3 levels for dosing - those ARE the levels that should be used for ANY thyroid patient.
I suggest you bring a copy of "Thyroid for Dummies" with you - here's a link about it to let you know where you can find the info about the best thyroid labs:
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8664608
I'll read on those links you gave me (I know thyroidmanager.org can be long and technical :)
But, I'll tell you this.....even though my GP doesn't know much about Graves', I think he's a really good GP - he'd been testing my thyroid for the whole time he's been treating me so my hyPERthyroidism got detected during my annual physical.
Anyhooo, he told me that, whenever a patient of his presents with symptoms and he knows the patient has thyroid disease, that's the first place he looks.
If I were you, I'd do whatever it takes to get my FT4 up - having my FT4 at mid-range was the best thing that ever happened to me.
I was hyPO in some shape or form for 22 of the 27 months I took ATD's - remember, I had over 60 symptoms at one point so I have a good idea of what you're going through.
Give mid-range FT4 a shot before you do anything else - it might just solve your ills.
I thought the first one was the pretty techical thyroidmanager.org but it's a link to a pamphlet of sorts.
The first link pretty much confirms low TSH and low FT4 as secondary hyPOthyroidism - well, that would be you :)
The second link presents a possible situation - however, since leaking milk is also a symptom of hyPOthyroidism, why not get out of hyPO and see if it stops?
Just remember, it can take a long while for all hyPO symptoms to dissipate after your FT4 level gets to your "best place".....the longer we are in hyPOhell, the longer it takes to get out.
If the symptom doesn't go away after you've been at your "best place FT4" for awhile, then you already know what to do....and I guess that prolactin testing is already the first step.
Honestly, I'd be hesitant to start a study drug - we got Graves' due to undue stress on our bodies - who knows what this study drug might do to your body?
I do agree that you might want to consider getting your FT4 up (the "trying to" relates more to finding a doc that will Rx it).
You definitely need a doc that doses by FT4 - you can ask when you call to make an appointment.
I can understand your concerns but, truly, the first place to look is your glaringly low FT4.