hollyhock Posted September 10, 2015 Share Posted September 10, 2015 Anyone have experience with this? Did you have symptoms or was it discovered by accident? And if you had symptoms, what were they? I was told I have this today. Unfortunately I have lots of symptoms, most of them very hormonal/cycle-related. I've had blood tests every few months for about two years now but nothing ever shows up except that my TSH is over 4 and sometimes T3 or T4 are low (they seem to take turns being normal and low). Just trying to figure this all out. My doctor thinks all my cyclical symptoms are due to PMS and not the hypo. I just don't know what to think. Thanks for any stories. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 I thought the TSH normal range had been lowered to 2.5 or 3. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 http://www.stopthethyroidmadness.com 1 Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 TSH is a hormone produced by your pituitary to tell your thyroid to make more t4, T3, free T4, and free T3, as well as other lesser known hormones. You cam have a normal TSH and still have low thyroid hormone levels if the pituitary isn't sending the correct message. Your doctor is undertreating you. His or her knowledge may be out of date. 3 Quote Link to comment Share on other sites More sharing options...
hollyhock Posted September 10, 2015 Author Share Posted September 10, 2015 I thought the TSH normal range had been lowered to 2.5 or 3. Has it been officially? I've read a lot about the controversy surrounding this but my doctors are all still going with "under 5 is normal". Especially my regular doctor. She's been so unhelpful I quit seeing her. It's a gynecologist who is doing this for me. She may not be a thyroid expert but I've seen an endo and he wrote me off, too. 1 Quote Link to comment Share on other sites More sharing options...
HSmomof2 Posted September 10, 2015 Share Posted September 10, 2015 A TSH of 4 is too high. The high end of the TSH was changed quite a few years ago to 3, yet some doctors (and labs) still don't acknowledge this. My endocrinologist thinks a TSH over 2 with symptoms is too high and likes it to be right around 1. Over the years, I feel best when my TSH is about 1. Free T3 and free T4 should also be run with TSH. 2 Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 10, 2015 Share Posted September 10, 2015 Has it been officially? I've read a lot about the controversy surrounding this but my doctors are all still going with "under 5 is normal". Especially my regular doctor. She's been so unhelpful I quit seeing her. It's a gynecologist who is doing this for me. She may not be a thyroid expert but I've seen an endo and he wrote me off, too. YES. Why most doctors continue to undermedicate their patients is way more than I can understand. Doc: You're clearly being overmedicated. Patient: What would be the symptoms? Doc: [lists hyperthyroid symptoms] Patient: I have none of those symptoms. In fact, I have every.single.symptom of hypothyroid. I am a walking poster child for hypothyroid. Why aren't you treating those symptoms? Doc: Because clearly you are overmedicated. Patient: :cursing: :banghead: :banghead: :banghead: The closer to zero your TSH is, the better. And you need to know, at a minimum, your T3 Free and T4 Free levels, because are the ones that actually indicate what your thyroid function is. If you're on FB, there's a group called Hashimoto's 411. You'll find lots and lots of help there. Many of the members have been better treated by functional medicine doctors, and by naturopaths who are also MDs. 4 Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted September 10, 2015 Share Posted September 10, 2015 I know my endo likes to keep her hypo patients at a TSH of 1. 1 Quote Link to comment Share on other sites More sharing options...
busymama7 Posted September 10, 2015 Share Posted September 10, 2015 Yes I've been diagnosed with it. I am being treated with nature thyroid and was encouraged to double the dose when I wasn't feeling better yet. I am now a completely different person. I actually have energy to function without laying down every hour and taking at least one daily nap. I wake up and feel like I can actually face the day rather than feeling like I was hit by a truck. I am also on bio identical testosterone and progesterone as well as metformin for insulin resistance. I can't believe how horrible I felt for long and how unnecessary it was. I had been told my thyroid and blood sugars were fine. I am so so grateful that my (new) doctor is knowledgeable about this stuff. Please feel free to PM me for more info as he will treat patients distantly. He is treating my sister who is out of state(cash pay) Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 My dad has had better results with a combo of Armour thyroid and Synthroid than Synthroid or Armour alone. I second the recommendation to look for a functional medicine doctor. They tend to be MDs with additional training in using nutrition, supplements, and lifestyle adjustments to treat the root causes of disease. At least, that's what a good one does. (There may be some who veer too far into what I consider woo-woo alternative medicine stuff that doesn't have any plausible scientific basis.) Quote Link to comment Share on other sites More sharing options...
SnMomof7 Posted September 10, 2015 Share Posted September 10, 2015 Iodine can also be very helpful. Even if it is an old school remedy. Quote Link to comment Share on other sites More sharing options...
snickerplum Posted September 10, 2015 Share Posted September 10, 2015 My last results were a TSH of .69. Dr didn't check T3 or T4. I have all the same hypo symptoms and have been on 50 mg of Synthroid for a few months. He said my results are normal so not to change anything. Does that make sense? Quote Link to comment Share on other sites More sharing options...
MercyA Posted September 10, 2015 Share Posted September 10, 2015 Here are links to the newer standards from American Association of Clinical Endocrinologists and The National Academy of Clinical Biochemistry. It's pretty sad that these came out in 2003, and doctors still aren't following them. 1 Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 10, 2015 Share Posted September 10, 2015 My last results were a TSH of .69. Dr didn't check T3 or T4. I have all the same hypo symptoms and have been on 50 mg of Synthroid for a few months. He said my results are normal so not to change anything. Does that make sense? Your results are NOT "normal," especially not if you have the same hypo symptoms. And any doctor who doesn't do a complete thyroid panel is not worth what you pay him. You might consider looking for a new doctor. 50 mg of Synthroid is *nothing.* 2 Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 My last results were a TSH of .69. Dr didn't check T3 or T4. I have all the same hypo symptoms and have been on 50 mg of Synthroid for a few months. He said my results are normal so not to change anything. Does that make sense? If you still have symptoms, then you aren't being treated correctly even if your TSH is normal. You need your T3, T4, free T3, and free T4 checked as well. I'd also recommend checking for thyroid antibodies. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted September 10, 2015 Share Posted September 10, 2015 Anyone have experience with this? Did you have symptoms or was it discovered by accident? And if you had symptoms, what were they? I was told I have this today. Unfortunately I have lots of symptoms, most of them very hormonal/cycle-related. I've had blood tests every few months for about two years now but nothing ever shows up except that my TSH is over 4 and sometimes T3 or T4 are low (they seem to take turns being normal and low). Just trying to figure this all out. My doctor thinks all my cyclical symptoms are due to PMS and not the hypo. I just don't know what to think. Thanks for any stories. Have you had the antibody test yet? Are you seeing a gp or endocrinologist? (I haven't read the thread yet, so I apologize in advance if this is a repeat!) 1 Quote Link to comment Share on other sites More sharing options...
hollyhock Posted September 10, 2015 Author Share Posted September 10, 2015 I have no idea if I've been tested for thyroid antibodies. If I have those, then I'm looking at Hashimoto's, right? I am seeing a gynecologist, which is sort of dumb, but she is the only doctor I've seen so far (out of 4) who is remotely helpful, including the endocrinologist that I saw for SIX months. I know she tested me for a bunch of stuff last fall; I wonder if antibodies was one of them but she never said and I didn't know to ask. Does anyone have a lot of menstrual problems as a result of hypothyroidism? Most of my symptoms center around that and the gynecologist is telling me that's PMS and not hypo, and therefore wants to treat that separately with Wellbutrin or the pill. Am I missing something or are menstrual issues definitely a symptom of thyroid problems? Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 10, 2015 Share Posted September 10, 2015 I have no idea if I've been tested for thyroid antibodies. If I have those, then I'm looking at Hashimoto's, right? I am seeing a gynecologist, which is sort of dumb, but she is the only doctor I've seen so far (out of 4) who is remotely helpful, including the endocrinologist that I saw for SIX months. I know she tested me for a bunch of stuff last fall; I wonder if antibodies was one of them but she never said and I didn't know to ask. Does anyone have a lot of menstrual problems as a result of hypothyroidism? Most of my symptoms center around that and the gynecologist is telling me that's PMS and not hypo, and therefore wants to treat that separately with Wellbutrin or the pill. Am I missing something or are menstrual issues definitely a symptom of thyroid problems? Check out this long and pathetic list of symptoms from Stop the Thyroid Madness. Indeed, low thyroid can cause menstrual problems, as well as the symptoms your gyno is telling you are PMS. If you do FB, please check out Hashimoto's 411, and look for the charts (in the "Photos" section) that specify the lab work that should be done, what optimal levels of TSH, Free T3 and Free T4 are, and more. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 Heavy periods can be a hypo symptom. Your doctor should not be pushing antidepressants on you instead of treating your hormones. Time for a new doctor. 2 Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 Always get copies of any labs done. Always. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 10, 2015 Share Posted September 10, 2015 The heaviness of my cycles is definitely tied to my thyroid levels. My endocrinologist likes to keep me between 1-2. I notice a difference in symptoms and feel much better closer to a 1. Adding my voice to the others above who say that you're not subclinical.... Quote Link to comment Share on other sites More sharing options...
hollyhock Posted September 10, 2015 Author Share Posted September 10, 2015 Well, she has me on 50 mcg of Synthroid. I've only been on this dose for about 6 weeks, so she is at least treating me somewhat, and I know that if I go back to her with unresolved symptoms, she'll listen. She's the only one I've seen who doesn't just go by (outdated) numbers. She did give me copies of blood work but I didn't keep them. Boo. Quote Link to comment Share on other sites More sharing options...
snickerplum Posted September 10, 2015 Share Posted September 10, 2015 Your results are NOT "normal," especially not if you have the same hypo symptoms. And any doctor who doesn't do a complete thyroid panel is not worth what you pay him. You might consider looking for a new doctor. 50 mg of Synthroid is *nothing.* If you still have symptoms, then you aren't being treated correctly even if your TSH is normal. You need your T3, T4, free T3, and free T4 checked as well. I'd also recommend checking for thyroid antibodies. Thank you for this! I found an endocrinologist in my new area, so I should get a more thorough exam. I started thinking - I could totally call my Dr and ask for the other tests, but at this point would I trust his interpretation? Probably my not. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 I have been treated with T3 alone two different times for high reverse T3. (This means that despite having normal thyroid levels, the reverse T3 blocked the receptors on cells leaving me with hypothyroid symptoms. I took the T3 until the ratio improved and symptoms went away. Now I no longer need it.) Both times, my period became less heavy, and I hadn't even realized it had gotten heavier until things got better. Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 10, 2015 Share Posted September 10, 2015 Well, she has me on 50 mcg of Synthroid. I've only been on this dose for about 6 weeks, so she is at least treating me somewhat, and I know that if I go back to her with unresolved symptoms, she'll listen. She's the only one I've seen who doesn't just go by (outdated) numbers. She did give me copies of blood work but I didn't keep them. Boo. Always keep your labwork. 50 mcg is nothing. 6 weeks is too long to be on a low dose when your symptoms are not improving. I say this as someone who is getting ready to fire her endo because of being on too low a dosage for almost 6 months. ::head desk:: Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted September 10, 2015 Share Posted September 10, 2015 In most states you can order your own labs through a site like www.directlabs.com. I have used then multiple times. Then you can bring the results with you to the new doctor, instead of needing two appointments. Quote Link to comment Share on other sites More sharing options...
redsquirrel Posted September 10, 2015 Share Posted September 10, 2015 Iodine can also be very helpful. Even if it is an old school remedy. That really depends on what the issue is. Be VERY careful supplementing with iodine. There is Hashimoto syndrome, which is different from being hypothyroid. I have been told that supplementing with iodine when the problem is hashimoto syndrome can make things much worse. I have a slow functioning thyroid and it is getting slower. I can't get my doctor to treat the symptoms and ignore the official level, even though it gets slower every year. I have gotten a lot of relief through acupuncture. I am feeling so much better these days. 2 Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted September 11, 2015 Share Posted September 11, 2015 This is amazingly widespread. Dh is diabetic and his tsh was 7-8 for years but they refused to follow the updated guidelines and treat him until he finally found a new doctor. I was borderline with thyroidtoxicosis (a doctor later diagnosed me based on my chart from when I had the occurrence) and the doctors had refused for months to treat my thyroid or look in to it, going so far as to tell me I had lymphoma and remove the lymph nodes in my neck for biopsy. Guess what? They were thyroid nodes and it was my thyroid. Sigh. Always get a second opinion and go to an endocrinologist! Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted September 11, 2015 Share Posted September 11, 2015 Ok, can I piggy back here. My doctor found my thyroid slightly enlarged on my last visit. This is my migraine specialist and I seem him every 3 months. He did blood work and my TSH was 3.88, my T4 was .9 and my T3 was 2.7. By the lab's standards, all of those are normal, although T3 & T4 are near the low end. He didn't do a referral, in fact I haven't even seen him since because the labs were "normal". I had debated seeing my GP who is generally very responsive, but from the lab results I was afraid she'd do nothing either. I have LOTS of hypothyroid symptoms, I won't bother to give you a list. With all that in mind should I be making an appointment with my GP? Quote Link to comment Share on other sites More sharing options...
hollyhock Posted September 11, 2015 Author Share Posted September 11, 2015 I think you should. If you have symptoms and especially the enlarged thyroid, I would think it would be worth looking into. 1 Quote Link to comment Share on other sites More sharing options...
Lakeside Posted September 11, 2015 Share Posted September 11, 2015 Does anyone have suggestions on how to find a functional medicine doctor? Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 11, 2015 Share Posted September 11, 2015 Does anyone have suggestions on how to find a functional medicine doctor? I did an Internet search for functional medicine doctors in my city. Apparently, functional medicine is a new thing; I only found one or two in my area. Quote Link to comment Share on other sites More sharing options...
momto10blessings Posted September 11, 2015 Share Posted September 11, 2015 A TSH of 4 is too high. The high end of the TSH was changed quite a few years ago to 3, yet some doctors (and labs) still don't acknowledge this. My endocrinologist thinks a TSH over 2 with symptoms is too high and likes it to be right around 1. Over the years, I feel best when my TSH is about 1. Free T3 and free T4 should also be run with TSH.Mine was 2.3 and my doctor told me it was pretty low and she could make it higher. Even though I had hypothyroid symptoms. I don't get it. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted September 11, 2015 Share Posted September 11, 2015 Here are links to the newer standards from American Association of Clinical Endocrinologists and The National Academy of Clinical Biochemistry. It's pretty sad that these came out in 2003, and doctors still aren't following them. Well, to be fair, which ones are they supposed to follow??? That site lists .3 to 3, .5 to 2, and cites .4 to 2.5 as the range for control subjects. As someone who's most recent results were .41, that doesn't help me one bit! Quote Link to comment Share on other sites More sharing options...
MercyA Posted September 11, 2015 Share Posted September 11, 2015 Well, to be fair, which ones are they supposed to follow??? That site lists .3 to 3, .5 to 2, and cites .4 to 2.5 as the range for control subjects. As someone who's most recent results were .41, that doesn't help me one bit! I’m sorry the article wasn’t helpful for you, but the point is that the high end of the standard normal range has been lowered from 5 to 3 or less. If the OP’s results are over 4, I’m not surprised that she’s symptomatic. Each lab (and doctor) should choose their own standard normal range based on the research they find most compelling. Your results would likely be considered normal or close to it. If you're really too low, you’ll eventually start seeing symptoms of hyperthyroidism. Quote Link to comment Share on other sites More sharing options...
Ellie Posted September 11, 2015 Share Posted September 11, 2015 Mine was 2.3 and my doctor told me it was pretty low and she could make it higher. Even though I had hypothyroid symptoms. I don't get it. ::face palm:: 1 Quote Link to comment Share on other sites More sharing options...
Lakeside Posted September 11, 2015 Share Posted September 11, 2015 I did an Internet search for functional medicine doctors in my city. Apparently, functional medicine is a new thing; I only found one or two in my area. Thanks! I know that there aren't any D.O.s in the area. I wonder if there are any functional medicine docs. Off to check. Quote Link to comment Share on other sites More sharing options...
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