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Post by Karen on Dec 11, 2011 12:16:33 GMT -5
So... I know, I know, another kick that Karen's on... But, all the research I've done suggests that thyroid function has a huge impact on how we feel, and for those of us that aren't feeling so hot, thyroid deserves a second look. Seriously. If you went to your doc and he/she thought enough about your symptoms to order a thyroid test and told you everything was fine, I'd encourage you to dig up your test results and figure out what he/she tested. If ONLY your TSH was tested and/or you were prescribed synthroid but you still have some thyroid symptoms, please, dig deeper!Here's a website that I found super helpful. It includes an exhaustive list of symptoms (painful, irregular periods, anyone???), tests to request, treatment options, the link between thyroid and mental health issues, research, etc. This is a site run by patients that have lived through all of it. Some of it may come off a bit preachy, but I'd rather have preachy from people that have been through it and have come out on the other side well, than doctors that are preachy and have no idea what it's like! www.stopthethyroidmadness.com/things-we-have-learned/I bought the book and am about halfway through it. Just about all the issues I've had in the past regarding the thyroid meds I've tried are outlined and explained in full detail. After reading WHY I had such bad reactions, the pieces are all starting to fit now. Finally, ladies, I'm starting to FEEL hopeful about all this. So, please, if you have some thyroid symptoms and have been checked out before, please dig a bit deeper, at least rule it out in more detail. The body is WAY more connected than we could ever imagine, so don't discount something like thyroid issues when you're wondering why you're having issues in your pelvis! Don't get me wrong - I'm not blaming thyroid issues for endo, but if it's part of the problem, why not work on finding part of the solution?
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Post by brussie on Dec 11, 2011 16:53:11 GMT -5
Hi Karen,
I'm curious about your previous thyroid experience. You were once on thyroid meds and felt even worse while on them? This same exact thing happened to me. My TSH is normal, but my free T4 is always too low. A previous ND put me on Armour thyroid and kept pumping up my dose. I felt worse and worse until I was literally exhausted constantly and my resting heart rate hit 130 bpm (it's normally around 80!). I went to the ER and they told me to stop taking the thyroid meds so I gradually decreased my dose and stopped seeing that ND.
About two years later, I told the whole story to my new MD. She had my thyroid antibodies tested (both types) and I had absolutely no antibodies. She said that 98% of people with autoimmune thyroid disease will have antibodies. She also said that she doesn't recommend thyroid drugs for people with non-autoimmune thyroid problems because for them, the thyroid problem is not truly a problem with the thyroid, but a problem with some other body system upstream that is resulting in a thyroid deficiency downstream.
Unfortunately, we're having some trouble pinning down my upstream problem! My cortisol levels look great (I've now had them tested 4 times!), iodine levels are not great but adequate, my liver is good, and I don't have a pituitary problem. So that rules out the typical upstream problems.
I know that high estrogen can cause thyroid disruption and my estrogen is indeed way too high. I talked to a lady at the local health food store about progesterone cream and she said that she is hyperthyroid and can't take anything that reduces estrogen or her high thyroid problems return. I'm hoping that estrogen is my upstream problem...
What was your experience with thyroid meds?
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Post by Karen on Dec 11, 2011 18:21:38 GMT -5
Ah, so I'm not the only one! What you described is almost exactly how I felt! I had thyroid symptoms for years and was first tested (TSH) probably around 1996. TSH has always been well within normal ranges. When I found my new doc for hormones, after trying a lot of different things, we finally decided to test my thyroid and although TSH was very normal, T4 was the lowest possible number within 'normal'. So, last January, we tried Synthroid. Big fat fail. I was on it a little more than a month and I felt like my body came to a complete halt. Sluggish wasn't even the word for it. I remember my stomach growling, sitting at my desk at work with a handful of nuts in front of me, and I had to convince myself to move my hand from the nut to my mouth. It was pitiful. Plus, my normally borderline low BP was on the high range then. Since I normally slow down in the winter anyway, it took us a little while to pinpoint the synthroid, and as soon as we did, I went off it. Then, we tried Naturethroid (similar to Armour, just different brand). My cortisol levels were low so we also supplemented with a low dose of hydrocortisone, which sent me into an anxiety-frenzy within a week. So, I went off both and had some further testing done. This fall, after we ruled some other things out, I tried Naturethroid again, but again got sluggish, racing heart, etc. I was a wreck, which prompted my therapist to call my doctor and my good friend to call my therapist! So, again, went off them. And that's where the website/book come in. There are several reasons why thyroid supplementation may backfire. The website explains them quite well: www.stopthethyroidmadness.com/mistakes-patients-make/ I hypothesize that I didn't increase my dose enough and my low cortisol levels. Essentially, I don't think my body converts T4 to T3 well, if at all. If conditions aren't right, your body can convert T4 to reverse T3, which in turn blocks the T3 receptors so your body can't use the T3 that you may have. So we're cutting out the conversion and supplementing with ONLY T3. I'm going to ask to have my free T3 and T4, TSH, and reverse T3 levels checked this week. I still have a ways to go, but am already seeing some big differences. I'm starting to realize that my reaction to the thyroid meds was not because I didn't need them, but because my body couldn't use them properly. Next up is getting my cortisol levels where they need to be. I KNOW they aren't right yet! Although I agree that if you don't have antibodies, it can suggest there's something else going on with your thyroid that's worth investigating, I wouldn't rule out supplementation. Your thyroid can contribute to so many other things, so it's hard to know which came first. I've also supplemented with iodine and necessary cofactors (vit A, C, selenium). After all, iodine is a requirement for thyroid hormones, so without adequate levels, your body will be unable to make enough thyroid hormones. Perhaps that's part of your issue? I'm impressed your doctor is thorough enough to test that! Most claim we get enough iodine in our diets... There's a really good book out there about iodine and why it's so critical, and why we don't get nearly enough. It had me convinced. A few questions for you - you said you had your cortisol levels checked several times - via blood, urine, or saliva? And have you had your iron and ferritin levels checked? A good friend of mine was having hyper-like symptoms on synthroid yet her TSH was really high, and it turns out her ferritin levels were really low. Does any of this ring true for you?
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Post by brussie on Dec 11, 2011 19:15:51 GMT -5
Hi Karen, I'm glad to hear the T3 only is working for you! How long have you been taking it? I actually did have a reverse T3 test while I was on the Armour and I had a "good ratio". My ND requested it when I began complaining of fatigue. Oddly though, my free T4 stayed out-of-range low even at my highest dose (2 grains) of Armour. That one was puzzling for my ND and me! I had symptoms of hyperthyroid, but was still technically hypo going by free T4 levels. My cortisol has been tested by saliva each time. I first tested it about five years ago and it was too high then because I was a coffee addict I kicked the habit about a year ago and my last cortisol test (a few months back) was in optimal range at all times of day. Now ferritin is something I've had trouble with for a long time. Five years ago I was really sick: exhausted, retaining 15 pounds of water, extreme digestive issues, messed up cycles, but no one could figure it out. Tests results showed low free T4 (though my MD who ran the test wouldn't treat it), a low ferritin of 12, frank anemia, and elevated liver enzymes. I radically changed my diet (cut out all processed foods, gluten, sugar, etc. basically went Paleo) and started on liquid iron supplements and I had a fairly miraculous recovery. My MD decided I must have had celiac disease. Though my ferritin never went above 25 my anemia subsided. To this day, I still take iron supplements, but can't get my ferritin over 25 and I am always borderline anemic (lowest part of the range in red blood cells and/or hemoglobin). I got a paragard installed over two years ago and suddenly had a relapse of some of my problems; mostly fatigue, terrible PMS, and weight gain (though I don't know if it's water this time...). That prompted me to see the ND who put me on Armour. I'm sure my ferritin was even lower during the time the paragard was in. I kick myself to this day for getting that stupid thing installed! My MD checked my iodine after the antibodies test came back negative. I don't use iodized salt or take a multi-vitamin, so she thought it was possible I was low. The test was a urine test and it came back at the low end of normal, but my MD said that wasn't enough to cause my low free T4. I would be willing to try thyroid meds again if I could get my ferritin up, I just can't figure out how to do that. Do you need adequate ferritin in order for T3 only meds to work? I have an appointment with my holistic MD next month, maybe I'll talk to her about all of this.
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Post by brussie on Dec 11, 2011 19:44:24 GMT -5
Sorry Karen, one question I just remembered: do T3 only meds suppress your natural thyroid production? I know that Armour suppresses endogenous thyroid production by driving TSH down to practically nothing. The thought of this always made me uncomfortable while I was taking it. If my thyroid can make hormone, I want it to! I just don't like the idea of being stuck on a med for life if it can be avoided. Though, I'd rather take a med forever that made me feel better than just be tired for the rest of my life
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Post by Karen on Dec 11, 2011 19:48:09 GMT -5
I've only been on it for a month. But, so far, it's a really nice change of pace. When you had the low levels of free T4 and a good ratio of rT3, was your free T3 level normal? Check this out about ferritin: www.stopthethyroidmadness.com/ferritin/ They offer some things to look for, explanation of why it affects thyroid hormones, and how you can increase absorption. Is there anything there that jumps out at you?
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Post by brussie on Dec 11, 2011 21:21:45 GMT -5
My free T3 has never been out of range low, but it's usually a bit below the mid-range. I don't remember what the ratio of fT3 to rT3 was, but my ND said it was right around where it should be.
Thanks for passing along that link! I read a bit of the STTM site a few years ago during the Armour experiment, but I don't think that Ferritin page had been developed yet. There's some good info there!
I didn't realize that people took 150-200 mg of elemental iron per day to raise ferritin. Maybe I'm just not taking enough iron. I take 100mg/day of liquid iron (Floradix) when I'm anemic, but I don't know if that refers to elemental iron. And I take Enzymatic Liquid Liver (the one mentioned on that page) regularly at 50mg/day. How does one know how much "elemental iron" there is in a supplement?
I used to have problems with low stomach acid. I actually took HCL before every meal for years. Then I went to an acupuncturist and after about a year of treatments and herbs, I didn't need the HCL anymore. So the part about low stomach acid rang true.
My doctors always suggest that I have low iron due to periods, but my periods really are not that heavy. I've been checked for ulcers and come back clean, so I'm not bleeding there. If the internal bleeding from ulcers is enough to cause anemia, I wonder if the internal bleeding from endo is enough to cause anemia...
Maybe I'll try upping my iron intake for a month or so and getting my ferritin re-tested. I'll ask my new MD next time I see her.
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Post by Karen on Dec 11, 2011 21:43:08 GMT -5
As for T3, I've heard a level that's in the upper third of the range is ideal. Mine has either been right at the lowest of the range or a bit below it (when I was on naturethroid).
I'll be honest, I don't know enough about ferritin to speak intelligently, but I hope this at least creates a dialog between you and your doc. Consider taking it with vit C as suggested? Consider getting your other iron levels tested as suggested as well?
There's a adrenal/thyroid forum out there. They aren't that friendly, but if you post your labs, they're quick to tell you what's right and wrong and what else you need to have looked at and/or what is typically done to treat the levels. There's actually a whole list of forum sites on the STTM website that may be able to offer you some more direction.
I look forward to hearing what your doc says! She seems to be doing all the right tests. I went to an endocrinologist that told my thyroid levels were fine in one breath, then later on suggested she could help me treat it. This was the same woman that suggested I had sleep apnea because I was so tired all the time, and people with thyroid problems didn't have the extreme fatigue that I had... Eh hem, needless to say, I didn't go back to her after I convinced her to run a whole bunch of tests to rule things out.
I'm curious - you mentioned you were able to rule out the pituitary - what tests ruled that out as the culprit?
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Post by brussie on Dec 13, 2011 15:10:24 GMT -5
Hi Karen,
So the Naturethroid made your FT3 levels worse? So odd, that's like my FT4 with the Armour. But in your case, you think this was from underactive adrenals? Do low adrenals cause you to be unable to turn T4 into T3?
I'm beginning to think that I'm just not taking enough iron to get my ferritin reserves up. I'm probably only taking enough to prevent myself from becoming anemic. I read something that said most types of iron are only 30% elemental iron. So there's no way I've ever even approached 150mg elemental iron!
I confess that I don't know much about the pituitary, so it's hard for me to pinpoint which tests she thought ruled that out. Maybe the prolactin test I had? I think pituitary problems affect a whole host of body functions far beyond the thyroid, so maybe just an absence of those other problems?
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Post by Karen on Dec 13, 2011 18:22:08 GMT -5
Yeah, my FT3 levels weren't any better on the naturethroid. One of the theories is cortisol since it somehow helps in the carrying or conversion; another is if T4 is getting converted into reverse T3 instead of T3, the RT3 competes for the FT3 receptors.
Yeah, prolactin is one that's often used to gauge pituitary function. Mine was borderline high, and I convinced an endocrinologist to order a MRI to rule out a tumor. I have heard there's an antibody test, but I haven't dug deeper into that. Now that I have a bit more direction on the thyroid/adrenal approach, I'm going to hold off on that for now unless I don't get anywhere.
I'd be curious if you're able to get your ferritin levels up, and if you'd react differently to thyroid meds then. If anything, I think it'd be worth a good conversation with your doc! With levels so low, I can imagine you're not feeling so great. Good luck & keep me posted?
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Post by brussie on Dec 14, 2011 16:20:24 GMT -5
Hi Karen, I just ordered some new thyroid and ferritin tests so I can bring the results in to my appointment next month. Since I'm on a PPO, I frequently just order my labwork in advance so I can bring it with me to appointments; it saves time! ;D I'll report back here with those test results and with my doc's perspective on everything. And keep me posted on your T3 only treatment, if you will.
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Post by Karen on Dec 14, 2011 18:38:46 GMT -5
Nice work! Let me know how those come back, k? I'm curious what your doctor's perspective will be. She appears to be looking into the right things, so I hope she's able to give you further direction! And yes, I'll keep you posted! Just had my blood drawn today for a thyroid and reverse T3 panel, see how things look before I adjust my dose.
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Post by Karen on May 1, 2012 20:27:32 GMT -5
FYI - Thanks to DeAnna for passing along a resource regarding T3 treatment AND an appropriate time of the day to take it so as to support the adrenals. I bought the book and will be testing it out on myself to see if it does, in fact, work for me. Stay tuned! recoveringwitht3.com/
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Post by mewmew2012 on Jul 20, 2012 14:46:15 GMT -5
I would get some blood work done. That is how my primary care diagnosed me. I was always cold, i had trouble losing weight and my thyroid gland was swollen. It took a couple of tries to put me on the right dose of meds. First they tried synthriod but now i am on levoxyl. Once they put me on the correct dose and med, I really felt better. Good luck to ya girl
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Post by Karen on Jul 20, 2012 16:15:43 GMT -5
Did your symptoms resolve on levoxyl? I was on a few different versions of synthroid and I felt AWFUL on it, but I hope someone else has better luck!
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