Tiramisu Posted January 6, 2015 Share Posted January 6, 2015 I'd be interested in hearing the stories of anyone who has dealt with this scenerio (which likely means secondary hypothyroid, caused by pituitary dysfunction). How where you treated and how did treatment go? TIA! Edited to change the title and bump Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2015 Author Share Posted January 7, 2015 Bump Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 7, 2015 Share Posted January 7, 2015 Not sure. Did they use the new lab norms for the TSH? Either way, I would be seeking out an endocrinologist for a treatment plan. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted January 7, 2015 Share Posted January 7, 2015 Have you been tested for antibodies? That is the standard for determining whether it is thyroid disease. I second going to an endocrinologist. Quote Link to comment Share on other sites More sharing options...
Ravin Posted January 7, 2015 Share Posted January 7, 2015 I'd probably ask for an endocrinologist referral. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2015 Author Share Posted January 7, 2015 Not sure. Did they use the new lab norms for the TSH? Either way, I would be seeking out an endocrinologist for a treatment plan. Yes, they used the new norms and her TSH was on the low side of normal, indicating an active thyroid. It's always been lowish as I looked back at her old bloodwork. What I found out is that TSH is a pituitary hormone and if something is not right with the pituitary (or with the hypothalamus which triggers the pituitary to release TSH) it might not release enough or even good quality TSH. So the otherwise healthy thyroid never gets the message that it should to produce more T4. And you can end up with a rare type of hypothyroid. The lesson is always ask for a free T4. We have an endocrinologist appointment for tomorrow. I'm not exactly looking forward to it but it's better to deal with it right away. I have so many anxieties about her going back to college with this unresolved. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2015 Author Share Posted January 7, 2015 Have you been tested for antibodies? That is the standard for determining whether it is thyroid disease. I second going to an endocrinologist. The symptoms have been long standing in dd and she has had repeated thyroid antibody tests with her rheumatologist due to an elevated ANA and she had a TSH test just last summer with her primary. Her TSH tests are always on the low side of normal which would typically indicate a well functioning thyroid so no one had looked further in the last couple of years despite the prolonged symptoms. Thankfully, you could say, she seemed so obviously hypothyroid and had gained so much weight that her rheumatologist added a Free T4 to the panel (not just TSH or a reflex) and it came up low. This is indicates a much rarer form of hypothyroidism. Oh, well. I just hope this means we can find a way to make her feel better. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 7, 2015 Author Share Posted January 7, 2015 I'd probably ask for an endocrinologist referral. Yup. And I was so thankful that the primary didn't ask any questions or want to see her first. I just want to get her into the endocrinologist and get a good plan started before her classes start again. Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 7, 2015 Share Posted January 7, 2015 I'd be interested in hearing the stories of anyone who has dealt with this scenerio (which likely means secondary hypothyroid, caused by pituitary dysfunction). How where you treated and how did treatment go? TIA! Edited to change the title and bump Yup. this is the most common complaint among us hypothyroid peeps: that doctors will only test TSH and not T3/T4, and the doctors tell us our thyroid function is normal because our TSH is normal, but when we nag them enough to get T3/T4 tested, turns out WE WERE RIGHT. :banghead: I'm dealing with 20 years of undermedicated thyroid issues. I finally have a primary care physician who heard my frustration and referred me to an endocrinologist, who *listened* to me. Quote Link to comment Share on other sites More sharing options...
Hannahs4 Posted January 7, 2015 Share Posted January 7, 2015 The T4 can be suppressed by so many other diseases /issues that are not primarily thyroid. You usually need the whole thyroid panel in order to make a diagnosis. So I second getting the free T4 by ED (and t3 etc). Quote Link to comment Share on other sites More sharing options...
Susan C. Posted January 8, 2015 Share Posted January 8, 2015 Hmm, not what I've read or experienced. Its free T3 that is where its at. That is what one's body uses. T4 converts to T3. Some don't convert, if not, then T4 is high and T3 is low (free T3 and free T4). TSH of someone without thyroid issues is around 1.0. Even 2.0 would cause low thyroid symptoms in some. Low T4 could just indicate not enough medication and/or thyroid hormone. Good luck and look up the site stopthethyroidmadness.com Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 8, 2015 Author Share Posted January 8, 2015 Hmm, not what I've read or experienced. Its free T3 that is where its at. That is what one's body uses. T4 converts to T3. Some don't convert, if not, then T4 is high and T3 is low (free T3 and free T4). TSH of someone without thyroid issues is around 1.0. Even 2.0 would cause low thyroid symptoms in some. Low T4 could just indicate not enough medication and/or thyroid hormone. Good luck and look up the site stopthethyroidmadness.com I got a chance to read up at stopthethyroid madness and now I feel a little better prepared for the appointment tomorrow. We had to change docs at the last minute because of a scheduling conflict. It feels like a miracle that we can get into one at all. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 9, 2015 Author Share Posted January 9, 2015 I have it. It's called secondary hypothyroid. Armour has made me feel loads better, but we are still ferreting out the underlying issue and whether it is pituitary or adrenal. Arctic Mama! I'm sorry you are going through this but thankful for your reply. I'm glad to know treatment made you feel better. A few other of dd's tests were off but I'm starting to wonder if just the low thyroid is behind it all, messing everything else up, or if it is the pituitary or another gland.. One thing I worry about is that in the literature it recommends treating people with secondary hypothyroid with something to support the adrenals before starting thryoids meds to avoid an adrenal crisis in someone who might have adrenal insufficiency. Were you treated that way? Quote Link to comment Share on other sites More sharing options...
imagine.more Posted January 9, 2015 Share Posted January 9, 2015 I have low free t4 and normal tsh, have for years. It took 5 years to get diagnosed and treated because nobody ever checked my antibodies. Turns out they were somewhere over 1900 (normal is 0-25) so I have now been diagnosed with Hashimotos. It took awhile but I finally found and endo who, while very old-fashioned, takes symptoms seriously and was willing to try meds. I'm on Armour thyroid now and in the past he's done short bursts of prednisone to make my immune system chill the heck out. I felt fantastic for the first time in 5 years last spring when I started Armour but then in late summer stress and illness knocked my energy out again. That's the thing, thyroid stuff is never static, it's constantly needing to be adjusted. I hope your endo appointment goes well and they listen to the symptoms and test everything. Definitely insist on a free t4, free t3, tsh, and antibodies test. Also people with thyroid problems often also have low vitamin d so maybe ask them to check that as well. Good luck! Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 9, 2015 Author Share Posted January 9, 2015 I have low free t4 and normal tsh, have for years. It took 5 years to get diagnosed and treated because nobody ever checked my antibodies. Turns out they were somewhere over 1900 (normal is 0-25) so I have now been diagnosed with Hashimotos. It took awhile but I finally found and endo who, while very old-fashioned, takes symptoms seriously and was willing to try meds. I'm on Armour thyroid now and in the past he's done short bursts of prednisone to make my immune system chill the heck out. I felt fantastic for the first time in 5 years last spring when I started Armour but then in late summer stress and illness knocked my energy out again. That's the thing, thyroid stuff is never static, it's constantly needing to be adjusted. I hope your endo appointment goes well and they listen to the symptoms and test everything. Definitely insist on a free t4, free t3, tsh, and antibodies test. Also people with thyroid problems often also have low vitamin d so maybe ask them to check that as well. Good luck! Hi imagine.more! Did they ever check your coritisol levels to see how your adrenals are doing? That's something I've read should be done if you have normal tsh and low T4, but I don't know how often it's done in practice. My daughter's doctor also has had autoimmune concerns but it's been awhile since her thyroid auto-antibodies were tested. Her ANA pops around and has had other very low levels of elevated auto-antibodies, but so far nothing has been obviously autoimmune. Quote Link to comment Share on other sites More sharing options...
Soror Posted January 9, 2015 Share Posted January 9, 2015 Hmm, not what I've read or experienced. Its free T3 that is where its at. That is what one's body uses. T4 converts to T3. Some don't convert, if not, then T4 is high and T3 is low (free T3 and free T4). TSH of someone without thyroid issues is around 1.0. Even 2.0 would cause low thyroid symptoms in some. Low T4 could just indicate not enough medication and/or thyroid hormone. Good luck and look up the site stopthethyroidmadness.com Fwiw I definitely had hyo symptoms with a "normal" TSH of 2, finally my antibodies were tested and I have Hashimotos and all the hypo symptoms that I had started to improve once beginning thyroid hormones. So, all that just to say make sure that the TSH isn't just "normal" but optimal, yes it could be secondary but considering the way it is diagnosed and the actual optimal ranges for TSH I'd want to make sure it wasn't primary. Also, I've read about people with Hashimotos but don't have the antibodies, so that is something to look into as well. Good luck, I hope the endo is good. I went straight to a functional medicine dr after reading about too many bad endos and being out of patience, but I did read that there are some decent ones out there. Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 9, 2015 Share Posted January 9, 2015 My daughter's doctor also has had autoimmune concerns but it's been awhile since her thyroid auto-antibodies were tested. Her ANA pops around and has had other very low levels of elevated auto-antibodies, but so far nothing has been obviously autoimmune. Hashimoto's is an auto-immune disease. I have it. My endo says it's Hashimoto's, not just hypothyroid, even though the more obvious autoimmune indications are not there. I forget why...something about my thyroid function not improving even after being properly medicated...at any rate, I also have rosacea, which some doctors believe is an auto-immune disease, and blepheritis (and eye condition), which some doctors believe is an auto-immune condition. My ANA levels are normal, though. Auto-immune disease doesn't always show up in tests. Quote Link to comment Share on other sites More sharing options...
imagine.more Posted January 9, 2015 Share Posted January 9, 2015 Tiramisu, no unfortunately it's near impossible to find a doc who will test cortisol levels or give credence to anything besides the most typical issues. You're right that it is what's recommended in many thyroid circles and I agree it should be done more typically but alas, in practice things are very different. With me my antibodies were so clearly elevated that I definitely have Hashimotos so I was just happy that at least that was being treated, but yes I do suspect there might be other underlying issues with me. Problem is when you live in a rural area like I do you kind of just have to make the best of the available medical care. I've lived in 3 different places with these thyroid issues and none have had good docs that were willing to look further. And I have had hypo symptoms and low free t4 and high antibodies with a TSH of 1-1.5 pretty consistently. My body temperatures when hypo are around 96.5, which is pretty crazy low and a clear sign that can't be chalked up to having four kids (something my doctors always said was "well, you're tired because you have kids.....") So anyway, TSH, while a good secondary thing to check, is not the best indicator like you've found out with your daughter and like many others say here. Quote Link to comment Share on other sites More sharing options...
Soror Posted January 9, 2015 Share Posted January 9, 2015 I'm traveling over 2 hours to see a doctor as I live in a rural area too, my body temp has also been low but most doctors these days don't look at anything other than the TSH. I had to go to an out of town dr just to get my anti-bodies tested and at the time I didn't even know about Hashimotos until my Thyroid Perioxidase Antibodies came back abnormal. I'm actually considering a new treatment called low dose naltrexone to see if it can budge my antibodies and give me more improvement as I've had a bit of a lapse and now my TSH is 3+, I had went down to under 1 in July, stupid Hashimotos makes it hard to treat though. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 9, 2015 Author Share Posted January 9, 2015 I wanted to post an update for you who have been so helpful. First of all, the endo asked me if I was a medical professional. And he wasn't being sarcastic. I guess all the reading paid off. Thanks for the suggestion and for sharing your ideas. He ordered more blood work to help clarify things, and we'll get that done tomorrow. The hypothyroid possibility will continue to be investigated but that's not what got his attention. He saw her prolactin levels told dd she could have a "brain tumor" and sent us for an MRI of her pituitary. Thank goodness I was there because I could quickly jump in with, he means a growth on your pituitary, lots of people have them. He got my point and said, yes, even I could have one and not know it, and there's medication for it. That helped dd take it well. So endocrinologist in the morning, MRI with and without contrast in the afternoon. We got high priority treatment, the insurance company was agreeable and gave us an authorization right away, and it was unbelievable how quickly it worked out especially with dd back to college on Sunday. Someone up there is taking care of us, wouldn't ya say? :) Quote Link to comment Share on other sites More sharing options...
Elisabet1 Posted January 10, 2015 Share Posted January 10, 2015 I am on Synthroid. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 10, 2015 Author Share Posted January 10, 2015 I am on Synthroid. Did your doctor easily agree to give it to you with normal TSH? Quote Link to comment Share on other sites More sharing options...
Soror Posted January 10, 2015 Share Posted January 10, 2015 That is great news, it sounds like he is very proactive, I hope they find out what is going on. Quote Link to comment Share on other sites More sharing options...
imagine.more Posted January 11, 2015 Share Posted January 11, 2015 That's very good news! I have suspected high levels of prolactin too but they never test me because I'm always either pregnant or nursing :) But I leaked milk a year after I weaned my firstborn without being pregnant or anything, which shows possible high prolactin. I'm glad your daughter is getting seen now early on! Doctors tend to blow everything off once you start having kids. Apparently everything is a pregnancy or postpartum symptom and it's impossible to have an actual disease AND be pregnant or postpartum (sarcastic of course). Praying the MRI goes well and you guys get good clear answers! Quote Link to comment Share on other sites More sharing options...
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