Who here has it? Did you go on the meds and get rid of all the weight? Has anyone tried the natural meds instead? Which one?
I have been through Hell and back with my thyroid, but am finally figuring it out.
First of all, I had auto-immune thyroid as a girl (Graves). Then about 3 yrs. ago I was put on Syntroid based on an elevated TSH and everything went to pot. Turns out I have Addison’s disease (my adrenals don’t work), and the synthroid threw me into crisis. Once that was stabilized with meds, I still was having low energy, weight gain and hair loss, even though my endo said my lab numbers were “normal.” After lots of research (try stopthethyroidmadness.com) I fired my endo and have found a forward-thinking GP who worked with me. I went off synthroid and took sustained release (compounded) T3 for almost a year until I felt slightly hyper, then added synthroid and dialed down the T3 until my labs were in range. By labs I mean Free T3 and Free T4… TSH doesn’t mean a thing for me since I don’t convert T4 to T3.
At any rate, I’m feeling the best I have for years, and only because I would not take no for an answer!
Best of luck with your thyroid journey… but please, don’t let them tell you “that’s normal for your age!”
Assume you have Hashimoto’s? Generally, I think once everything is regulated you can get your weight back down to normal (I have Graves, which is the opposite problem – sadly I went back to my normal weight once everything was regulated again), but it may not just “go.”
Not sure what you mean by “natural,” but given how awful I feel when everything’s out of whack and the dosage is off, I wouldn’t mess around with things that are off the beaten path. I’ve heard that diet and supplements (selenium, for example) can sometimes help very mild cases, but the vast majority of people do end up using levothyrox.
I think by “natural” OP means Armour thyroid, or the equivilant. There is nothing “off the beaten path” about it… it was the gold standard before the pharmaceutical companies decided we would all be better off on T4 only, and the doctors bought into it. In my case, that couldn’t be farther from the truth. I did try Armour at one point, but it didn’t have enough T3 in it for me. Recently, a friend of mine who was gaining weight on synthroid (or levothyroxine, it’s all the same) switched to Armour and has had fantastic results. Bottom line: if you are on thryoid meds and still can’t shed the weight, you need to try something else. The problem is finding a doc to go along with it…
Meh, generally when people on Chronicle say “natural” they mean non-allopathic meds – ie nutraceuticals, diet, herbals, essential oils, etc. Nootka may or may not mean Armour, just wanted to cover the bases here.
Can’t speak to the weight loss thing myself since I had Graves, but IME, friends with Hashmoto’s have tended to need to do a little more exercise to get off that last little bit of weight. 
“natual” ment -in my mind- Armour (but I wanted to know if there was anything else other than that and what I am on -levothyroxine )
Naturethroid, Westhroid, Armour, Erfa are also natural thyroid meds.
There are OTC thyroid products availabe, but they are unregulated and the dosing is unpredictable. You do not want to mess around with thyroid… too high a dose could possibly cause a heart attack.
Regular testing of Free T3 and Free T4 are essential until you are regulated, and periodically after that.
After a partial thyroidectomy last year and subsequent diagnosis of Hashimoto’s, I was put on Synthroid. Even with decent T3 and T4 levels, I had numerous side effects while on the medication. My endocrinologist recently switched me to Armour thyroid. So far, it has been great-- far fewer side effects, much more comfort, and a general stability to how I’ve felt. (For other things, I’m on Lyrica, Cymbalta, and Plaquenil-- you do the math :winkgrin: – so any small change that makes a big difference is greatly welcomed.) The natural route may be worth a try.
Downen, I’ve never heard of OTC thyroid products. Are there any specifically that you do not like? Are these the herbal-conglomerations like “adrenal referesh” and comparably questionable drugs?
Downen, I’ve never heard of OTC thyroid products. Are there any specifically that you do not like? Are these the herbal-conglomerations like “adrenal referesh” and comparably questionable drugs?[/QUOTE]
First of all, I’m very sorry for all you’re dealing with. I can sympathize!
Before I was able to hook up with my current GP, my acupuncturist gave my some OTC T3. I believe it was called Spectra, but I might be mistaken. She told me to be cautious with it, but because the amounts of T3 were much too low for me, I could probably never have taken enough to make me hyper. This particular supplement was from bovine thyroid (not an herbal), as opposed to Armor or the equivalent, which is from porcine thyroid. At the time I took it I was very hypothyroid, so it helped some, but it wouldn’t have been a long-term solution. Also, since it is not overseen by the FDA, there is always the risk of contamination, dosage discrepancies, etc.
Because OTCs aren’t regulated, as I said in my previous post, you want to be careful because they can cause heart problems if taken incorrectly. I have not heard of “Adrenal Refresh” but again, I would tread very carefully when dealing with endocrine disorders. My adrenal glands do not function at all, which is life-threatening, so I have to take hydrocortisone for the rest of my life. Anyone who thinks they have adrenal problems should push (hard) for proper testing, which is an ATCH stim test. Serum cortisol test are not reliable. I went through three doctors before I found one to run the test, which confirmed what I thought I had: Addison’s disease.
It is frustratingly difficult to find open-minded and on-the-ball endocrinologists or GPs these days. One thing that strikes me as I read your post is that you take Lyrica (Fibromyalgia?) and Cymbalta (depression?) and Plaquinil (RA?). Hashimoto’s can cause symptoms attributable to all those diseases, so if you can get yourself stabilized, you might find you can wean off those drugs. I’m hoping your doctor made a definitive diagnosis before putting you on all those drugs, because mine tried to put me on some of them before they even ran tests, particlarly for depression. I refused until I had a diagnosis. In fact, one doctor prescribed an anti-depressant (without a thorough exam) when I was in an undiagnosed adrenal crisis, and had I taken them, I would probably be dead now. Not a big fan of doctors anymore. I do the research, and consider them warm bodies to write prescriptions. 
Question for you: Why was part of your thyroid removed? Cancer? Or were you being treated for Graves and they overdid it? Forgive me if I’m getting too personal, but Hashimoto’s indicates autoimmune activity, not surgically induced hypothyroid.
Yeah, Hashimoto’s is an autoimmune disease. I tried to get ‘looked at’ for years and get a consult to endocrinology. Docs and PA’s said no. They said they’d be laughed out of the hospital because my TSH, T3 and T4 were within normal limits, although borderline. I had, and still have, symptoms up the ying yang. I finally got a consult and wound up with a 2nd year (out of 3) resident in endo. She came out into the waiting room, sat down in front of me - in the waiting room - and told me I needed a psych consult. HUH??? She asked me if I got joy out of anything in my life. Say what?? You don’t know a thing about me. You’ve only been talking AT me for 2 or 3 minutes. She asked, realistically now, how many times I’d considered suicide. Well, I thought, not suicide, but right now I’m thinking homicide.
Finally, she said she was going in to the clinic to get the consult for for psych. As she walked around behind me I said, “Excuse me. I know I have some memory problems, and sometimes a bit of attention problems, but . . . .”. “Well, what is it”, she asked. I said, “Maybe I’m wrong, but I don’t remember you examining me”!. “Oh, all right”, she said, came up behind me and put her hands on my neck. “OH MY GOD, you have a goiter. I’m going to the Chief”.
OK, off to the lab to get anti-thyroid and anti-nuclear antibody tests - off the chart, in fact waaaayyyyyyyy off the chart. Took many dilutions to get a titer. OK, next off to thyroid ultrasound. Yup, findings consistent with Hashimoto’s. Back to the Chief this time. Yeah, he admitted, I had Hashimoto’s. He told me to come back when my thyroid failed. Hmmmmmmm!!!
Got a referral to another doc. Am being treated, but I still have lots of symptoms. always tired, memory problems, high cholesterol and high BP (probably caused by the Hashimoto’s). So, I’m on Synthroid, Cytomel, a Statin, 2 different BP meds, and I still have symptoms.
“But” the newer doc says “your labs are good”. Well geez, doc, they were when we started. When do I start getting better??? I asked about Armour thyroid. Naaahhhhhh doesn’t make any difference in his opinion. I’m out of ideas.
I have had my TSH spike up to 15 while on the meds, but it’s only my imagination that I still have symptoms.
I’m at a loss - as it seems most people with thyroid disease are - especially Hashimoto’s.
If you look at most Endo’s credentials, it’s all about diabetes.
[QUOTE=Tiki;5560012]
Yeah, Hashimoto’s is an autoimmune disease. I tried to get ‘looked at’ for years and get a consult to endocrinology. Docs and PA’s said no. They said they’d be laughed out of the hospital because my TSH, T3 and T4 were within normal limits, although borderline. I had, and still have, symptoms up the ying yang. I finally got a consult and wound up with a 2nd year (out of 3) resident in endo. She came out into the waiting room, sat down in front of me - in the waiting room - and told me I needed a psych consult. HUH??? She asked me if I got joy out of anything in my life. Say what?? You don’t know a thing about me. You’ve only been talking AT me for 2 or 3 minutes. She asked, realistically now, how many times I’d considered suicide. Well, I thought, not suicide, but right now I’m thinking homicide.
Finally, she said she was going in to the clinic to get the consult for for psych. As she walked around behind me I said, “Excuse me. I know I have some memory problems, and sometimes a bit of attention problems, but . . . .”. “Well, what is it”, she asked. I said, “Maybe I’m wrong, but I don’t remember you examining me”!. “Oh, all right”, she said, came up behind me and put her hands on my neck. “OH MY GOD, you have a goiter. I’m going to the Chief”.
OK, off to the lab to get anti-thyroid and anti-nuclear antibody tests - off the chart, in fact waaaayyyyyyyy off the chart. Took many dilutions to get a titer. OK, next off to thyroid ultrasound. Yup, findings consistent with Hashimoto’s. Back to the Chief this time. Yeah, he admitted, I had Hashimoto’s. He told me to come back when my thyroid failed. Hmmmmmmm!!!
Got a referral to another doc. Am being treated, but I still have lots of symptoms. always tired, memory problems, high cholesterol and high BP (probably caused by the Hashimoto’s). So, I’m on Synthroid, Cytomel, a Statin, 2 different BP meds, and I still have symptoms.
“But” the newer doc says “your labs are good”. Well geez, doc, they were when we started. When do I start getting better??? I asked about Armour thyroid. Naaahhhhhh doesn’t make any difference in his opinion. I’m out of ideas.
I have had my TSH spike up to 15 while on the meds, but it’s only my imagination that I still have symptoms.
I’m at a loss - as it seems most people with thyroid disease are - especially Hashimoto’s.
If you look at most Endo’s credentials, it’s all about diabetes.[/QUOTE]
OMG, our stories are so similar! My first doctor said he wouldn’t refer me to an endo, he wouldn’t know what to tell them since my labs were in “normal range.” Nevermind my hair was falling out and my legs were swelling like tree trunks. Another doctor LAUGHED at me and said, “Relax, IT’S NOT LIKE YOU’VE GOT CANCER!!” He’s the one who wrote me the prescription for anti-depressants, when my BP was 80/50 and it dropped to unreadable when I stood up! It was a miracle I could even walk, but they declared me normal.
Please don’t give up, but I don’t think you’ve been served well so far. Please go to www.stopthethyroidmadness.com and read up, as well as www.goodhormonehealth.com. That is Dr. Friedman’s site. Many fly out to him in LA for a consult, then he coordinates with your local doc. Like me, you have definite auto-immune issues that don’t respond to standard treatments. Please don’t give up and accept until you’ve exhausted every possible option.
I have to run out for my acupuncture. Please don’t hesitate to PM or email me.
Take care!
downen, thanks. I took a quick look at Dr. Friedman’s site and he recommends Armour OR a combo of T3 and T4. I am on levothyroxing (T4) once a day and liothyronine (T3) twice a day - still with all the same symptoms. I’ll have to look through the other info later. It’s that durn TSH, T3 and T4 lab levels that are driving the dosage. I still don’t understand that when all the levels were within normal range before. Both the endo and the regular docs tell me every once in a while they have to cut my T4 dose as the lab levels are depressed meaning I’m getting too much.
This has to be one of the most frustrating conditions known (well, it’s really not well known, is it?) to mankind.
[QUOTE=downen;5559869]
It is frustratingly difficult to find open-minded and on-the-ball endocrinologists or GPs these days… Question for you: Why was part of your thyroid removed? Cancer? Or were you being treated for Graves and they overdid it? Forgive me if I’m getting too personal, but Hashimoto’s indicates autoimmune activity, not surgically induced hypothyroid.[/QUOTE]
Thank you for taking the time to write this all out-- I’m sorry you have to deal and cope with all that you’re handling, but I really appreciate your input. Like Tiki expressed, too, this is all a frustrating cycle and situation. Doctors be damned-- I don’t trust them at all.
No worries about getting too personal-- I opened myself up to discussing all of this. I’m not one to ever talk about things, so this is a novel experience, but hopefully someone else can somehow find anything insightful. Lyrica is for fibro, and Cymbalta, too (although the mood stabilizer element doesn’t hurt! ). Plaquenil for Sjogren’s (which, as I understand, may slow the progression into RA?).
I’ll keep this very short. Prolonged symptoms and years of testing (since '05) after several different charlatan-esque doctors led to the diagnosis of fibro and Sjogren’s in fall of '09. In spring '10, right half of the thyroid developed a large cyst. Doctors aspirated the cyst, fluid had cells that were inconclusive re: cancer, so they removed it to be safe. Ended up being a few millimeters of cancer on the thyroid. (They are now monitoring the left half via ultrasound every couple months.) Not a big deal, but the endocrinologist then diagnosed the Hashimoto’s.
The symptoms of all three conditions greatly overlap, which is ridiculously frustrating. I’ve tried to wean myself off the meds (I’m greatly committed to holistic, natural living), but symptoms reignite with a vengeance when I try. It seems that I have a tolerable balance right now, as long as I keep emotional stress to a minimum. (Some physical stress I tolerate well-- although I’m trying to find a way to get cross-country to feel better-- but the least bit of outside emotional strain creates excruciating pain.) Certain foods cause a downward spiral of hell, and the least bit of sleep interruption or deprivation kills me.
There’s a fine balance that I work hard to maintain, but I keep hoping there will be some underlying discovery of what is causing all of this. (But, I guess everyone experiencing these conditions feels the same way!) My house (and farm, for that matter-- I’m neurotic at times) is feng shui-d to perfection, and a calm, peaceful environment is what I try to keep established. If anyone would like an escape from reality, they are welcome to come join me in my candle-laden, waterfall-decorated, holistic happiness in NC. :yes:
You sound like me, years ago. Got my thyroid levels regulated, felt better for a while. (Statins can cause memory problems, by the way). Have you ever been tested for Lyme disease and other tick transmitted diseases? Lyme has been implicated in Hashimotos.
[QUOTE=Tiki;5561110]
downen, thanks. I took a quick look at Dr. Friedman’s site and he recommends Armour OR a combo of T3 and T4. I am on levothyroxing (T4) once a day and liothyronine (T3) twice a day - still with all the same symptoms. I’ll have to look through the other info later. It’s that durn TSH, T3 and T4 lab levels that are driving the dosage. I still don’t understand that when all the levels were within normal range before. Both the endo and the regular docs tell me every once in a while they have to cut my T4 dose as the lab levels are depressed meaning I’m getting too much.
This has to be one of the most frustrating conditions known (well, it’s really not well known, is it?) to mankind.[/QUOTE]
You’re right, it is frustrating! And the fact that doctors are SO dependent on labs to the point where they ignore symptoms! I need to tell you, right now my TSH is totally supressed. Something like .1, off the charts low. But my T3 is in the high range of normal, and my T4 is just right, and I feel pretty darn good for all that’s wrong with me. I’m riding again, and working with a clear head. So my doctor’s cool with the non-existant TSH. THAT’S the kind of doctor you need to find. If you look on Friedman’s site, he lists doctors he works with in various areas. That might be a place to start. Also, you could call your local compounding pharmacy and ask if any doctors are prescribing sustained release T3. The doctors that do are usually more open-minded and progressive.
One more thing to look at are your Frees: If your free T3 is low normal, and your free T4 is high normal, even if your TSH is good, you’re not converting properly, and may need T3 only therapy.
[QUOTE=Glenbaer;5561295]
Thank you for taking the time to write this all out-- I’m sorry you have to deal and cope with all that you’re handling, but I really appreciate your input. Like Tiki expressed, too, this is all a frustrating cycle and situation. Doctors be damned-- I don’t trust them at all.
No worries about getting too personal-- I opened myself up to discussing all of this. I’m not one to ever talk about things, so this is a novel experience, but hopefully someone else can somehow find anything insightful. Lyrica is for fibro, and Cymbalta, too (although the mood stabilizer element doesn’t hurt! ). Plaquenil for Sjogren’s (which, as I understand, may slow the progression into RA?).
I’ll keep this very short. Prolonged symptoms and years of testing (since '05) after several different charlatan-esque doctors led to the diagnosis of fibro and Sjogren’s in fall of '09. In spring '10, right half of the thyroid developed a large cyst. Doctors aspirated the cyst, fluid had cells that were inconclusive re: cancer, so they removed it to be safe. Ended up being a few millimeters of cancer on the thyroid. (They are now monitoring the left half via ultrasound every couple months.) Not a big deal, but the endocrinologist then diagnosed the Hashimoto’s.
The symptoms of all three conditions greatly overlap, which is ridiculously frustrating. I’ve tried to wean myself off the meds (I’m greatly committed to holistic, natural living), but symptoms reignite with a vengeance when I try. It seems that I have a tolerable balance right now, as long as I keep emotional stress to a minimum. (Some physical stress I tolerate well-- although I’m trying to find a way to get cross-country to feel better-- but the least bit of outside emotional strain creates excruciating pain.) Certain foods cause a downward spiral of hell, and the least bit of sleep interruption or deprivation kills me.
There’s a fine balance that I work hard to maintain, but I keep hoping there will be some underlying discovery of what is causing all of this. (But, I guess everyone experiencing these conditions feels the same way!) My house (and farm, for that matter-- I’m neurotic at times) is feng shui-d to perfection, and a calm, peaceful environment is what I try to keep established. If anyone would like an escape from reality, they are welcome to come join me in my candle-laden, waterfall-decorated, holistic happiness in NC. :yes:[/QUOTE]
Well, thanks for sharing… it really does help to talk about these things. I’ve learned so much from my Addison’s forums; I think the quality of my life would be nowhere near what it is now if not for the sharing of information by others.
Please, just don’t give up on your quest to feel better. Like you, I have a myriad of autoimmune diseases (MS, Addison’s, Hashimoto’s, Pernicious Anemia, and probably more to come!), but I refuse to give up on life. When I was so ill, one doctor told me, “What do you expect, you’re almost 50!” Well, I expect to live my life on my terms. I bought myself a young (albiet quiet) horse a few years ago, and although I can’t ride like I did 20 years ago, I’m having a ball with him, and all because I pushed to feel better. Hang in there, and keep those doctors earning their money!
Oh, and don’t feel bad about needing your meds. We Addison’s people go through that all the time. Even though we need steroids to live, they’re “bad” and we try to get by on as little as we can, which can often be a big mistake. The trick is finding the RIGHT meds, and not letting your doctor throw a script at you in lieu of a diagnosis.
Also, I agree about the Lyme testing. One more thing to rule out. I tested negative…
For Lyme, make sure they do a complete Western Blot and ask to see the results. Also, sometimes a CD57 done by Lab Corp. will show a problem. I never tested positive on the first line test, it has a 50% false negative rate. Even the Western Blot is not perfect and it really depends on the lab doing the testing. My doctor ended up doing an antibiotic challenge, only then did I test positive. I did also have Babesiosis.
I found a great doctor in Baltimore on the Mary Schomon website. Lots of good thyroid info.
Good doctors are hard to find, keep looking until you find one who works for you.
I’m in the military system and basically have to take what I get, although I did manage to get the new endo doc. I wrote up the resident. Her Chief and the Hospital Commander wanted to know why I didn’t like her as everyone else did. HA!! I’ve since heard horror stories about talking to other patients out in the waiting room (totally inappropriate!!) and seeing diabetes patients without ever asking them to remove their shoes and stockings to check feet. That’s an absolute no no in medicine for a diabetic.
I’m going to have to find my old labs - actually I have to go get some new ones done - and find out exactly what they’re checking. I know they did some ‘free’ tests.
I do wish they’d go by symptoms though, rather than lab results. I’m the one with the problem, not the lab results.
One of the associated problems I had was the hypothyroidism thinned, weakened and made brittle the gluteus minimus tendon, and it tore. Took surgery (again after a big battle. Me, "It’s torn. Docs, "It couldn’t be, that doesn’t happen). Took a while to get that diagnosis, plus a year of rehab and the left side is still weak and now with a lot of scar tissue.
[QUOTE=Tiki;5561818]
I’m in the military system and basically have to take what I get, although I did manage to get the new endo doc. I wrote up the resident. Her Chief and the Hospital Commander wanted to know why I didn’t like her as everyone else did. HA!! I’ve since heard horror stories about talking to other patients out in the waiting room (totally inappropriate!!) and seeing diabetes patients without ever asking them to remove their shoes and stockings to check feet. That’s an absolute no no in medicine for a diabetic.
I’m going to have to find my old labs - actually I have to go get some new ones done - and find out exactly what they’re checking. I know they did some ‘free’ tests.
I do wish they’d go by symptoms though, rather than lab results. I’m the one with the problem, not the lab results.
One of the associated problems I had was the hypothyroidism thinned, weakened and made brittle the gluteus minimus tendon, and it tore. Took surgery (again after a big battle. Me, "It’s torn. Docs, "It couldn’t be, that doesn’t happen). Took a while to get that diagnosis, plus a year of rehab and the left side is still weak and now with a lot of scar tissue.[/QUOTE]
From now on, I’d recommend starting a file with all lab results. Insist on a copy each time you get labs. I have a file from the past three years, and it’s helped me and my doctor tremendously.
So sorry about your torn tendon… painful! That can certainly come out of untreated or undertreated hypothyroid. When I was really bad, every time I picked up a bucket, it felt like my arms would pull out of the sockets. I’m much better now! I hope you can get yours rehabbed and back to normal soon. My daughter is recovering from tendon surgery, and I know how hard it can be.
Too bad about the crummy medical care, but it’s not just confined to the army, I’m afraid. I made the mistake of going to a pharmacy quick-care place for a sinus infection, and she completely ignored me and insisted it was allergies, and tried to sell me on a steriodal nasal spray. When I told her I was on steroids and couldn’t take something like that, she told me no worries, it’s just TOPICAL. What an idiot. I walked out.
Actually, I’ve had some excellent care in the military. There are good and bad, just like everywhere else. There are some of the best docs and surgeons you could ever imagine and some I’d just rather not deal with, just like outside. I just may be an outlier with them. That doesn’t excuse poor or improper care, but you’ve had your share of bad care on the outside.
When I shattered my arm (kicked by someone else’s horse) I had a fantastic surgeon on the outside and was handed over to an incredible hand surgeon in the military when I could drive. The doc who reattached the tendon was brilliant, but there were several others who said it was just bursitis. They sure won’t be able to use that excuse anymore as the bursa was removed during the surgery.
