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Thyroid info/treatment
Advise anyone, I have Hashimot'o's. Does anyone know how to tell if hyper labs[the free's and tsh] and hyper symptoms ,are a die off of cells from an attack or was I over medicated? I went hyper while at 105 mgs Armour. Dr. made me way cut back to 45 mgs. I went totally hypo. again. Finally back up to 90mgs. Some improvements, but I think I want to go up again, based on symptoms. But ,doc say's my labs are perfect! He said he treated "people not Labs" He's afraid that i'll "go toxic again". My current symptoms are cholesterol over 400, headaches, hair loss, I have to spend 13 hours in bed or I'm sick. Blurred vision,bleeding receding gums,distention and slow digestion,constipation ,body pain and 25lbs. of odd,lumpy swelling that came on in a few months in 2010! many more symptoms and this is an improvement! My latest labs from December are TSH 1.60,[ range up to 5.5,] free T3 3.2 [range 2.1-4.4,] freeT4 0.6 [range 0.6-2.7.] I believe they are low. How can I get proper afford able treatment in Cincinnati area? T
Thank you, Emily
Thank you, Emily
There's no way to tell if your hyper symptoms were caused by your thyroid behaving chaotically as a natural part of the disease or if you were overmedicated.
Were you having hyper symptoms when you went hyper on 105 mgs Armour, or was your TSH just low? What were your FT3, FT4 and TSH at that point? It would be really interesting to compare them to where you are now.
Why did your doctor lower your meds so drastically? 105 to 45...that's quite a jump.
Your current FT4 is extremely low. FT4 often has to be midrange before symptoms are relieved. FT3 is also on the low side...rule of thumb for FT3 is upper half to upper third of range.
Were you having hyper symptoms when you went hyper on 105 mgs Armour, or was your TSH just low? What were your FT3, FT4 and TSH at that point? It would be really interesting to compare them to where you are now.
Why did your doctor lower your meds so drastically? 105 to 45...that's quite a jump.
Your current FT4 is extremely low. FT4 often has to be midrange before symptoms are relieved. FT3 is also on the low side...rule of thumb for FT3 is upper half to upper third of range.
I'm so glad to hear from you. I'm very upset I've been ill for years and feel like I'm losing hope with this doc too. Yes, I was having hyper symptoms. The Doc says it IS because I was over medicated PERIOD! Won't let me go up now. The labs when hyper@ 105mg where: TSH 0.01[range 0.40-4.20] Ft3 6.0 [range 2.1-4.4] Ft4 2.6 [range 0.6-2.7]. He lowered the meds so drastically because he said I was SEVERELY over medicated! Now I 'am almost 5 weeks at 90 mgs., with symptoms .I also think my labs are low now. He says they are Perfect" What now ? So upset. It took a lot to find a doc that did Armour and treated by symptoms and now this!
I don't know quite where your doctor is coming from. Your labs aren't "perfect" by any stretch of the imagination. FT4 is on the floor of the range, and FT3 is below midrange.
I'm sure his concern is that your meds are approaching what they were when you went hyper, but your labs are NOTHING like they were then. When you were hyper, your FT3 was over range (had you taken your meds prior to that blood draw?), and your FT4 was almost at the top of the range.
I think he's spooked at this point. He knows that you went hyper at 105 mg, and he's afraid to go there again. BUT, your labs are no where near the same.
Apparently, he's no longer interested in treating by symptoms since you have a lot of hypo symptoms, and he thinks everything is "perfect".
At the time, you were overmedicated. Why? Perhaps it was a Hashi's swing. You no longer are even close to being overmedicated. Your doctor has to be able to adjust your meds dynamically as this disease progresses with all its excentricities. What was the correct dosage back then isn't necessarily the correct dosage now as your labs clearly show. Changing your dose from 105 to 45 was a huge adjustment. He'd been better off changing it a much smaller amount, then perhaps raising it again when your Hashi's flair had subsided.
You can try educating him...or you can try to find a better thyroid doctor. i think you need an increase. I'd probably give him one more try. Point out to him the difference in your labs at 105 and now. List your hypo symptoms. Talk about swings from hypo to hyper with Hashi's. If you can't get through to him, move on.
One of our members, gimel, keeps a list of good thyroid doctors recommended by members. He might be able to suggest someone in your area.
I'm sure his concern is that your meds are approaching what they were when you went hyper, but your labs are NOTHING like they were then. When you were hyper, your FT3 was over range (had you taken your meds prior to that blood draw?), and your FT4 was almost at the top of the range.
I think he's spooked at this point. He knows that you went hyper at 105 mg, and he's afraid to go there again. BUT, your labs are no where near the same.
Apparently, he's no longer interested in treating by symptoms since you have a lot of hypo symptoms, and he thinks everything is "perfect".
At the time, you were overmedicated. Why? Perhaps it was a Hashi's swing. You no longer are even close to being overmedicated. Your doctor has to be able to adjust your meds dynamically as this disease progresses with all its excentricities. What was the correct dosage back then isn't necessarily the correct dosage now as your labs clearly show. Changing your dose from 105 to 45 was a huge adjustment. He'd been better off changing it a much smaller amount, then perhaps raising it again when your Hashi's flair had subsided.
You can try educating him...or you can try to find a better thyroid doctor. i think you need an increase. I'd probably give him one more try. Point out to him the difference in your labs at 105 and now. List your hypo symptoms. Talk about swings from hypo to hyper with Hashi's. If you can't get through to him, move on.
One of our members, gimel, keeps a list of good thyroid doctors recommended by members. He might be able to suggest someone in your area.
Thanks! I realized that I must have raised my dosage by 15mg. after the latest labs. that I wrote about. Those labs were done 6 weeks after I started 75mg. Sorry. I'm confused! I'm at 90mg now. Have been for over 5 weeks .I was at 75 when last labs where done. I am still very symptomatic, as I have written above. Yes, I believe he's afraid to over medicate and go to 105 with meds. No, I did not take meds prior to the "hyper" draw. He says it doesn't matter! I don't believe he understands the Hashi's. He has made comments like'your thyroid seems to have a mind of it's own" and "your thyroid is really screwed up" On one hand, he is doing the right tests and put me on a med many want but can't get.. On the other, he doesn't want to see me until APRIL, 12 WEEKS AT 90mg. WITH HYPO SYMPTOMS. He has stopped responding to my emails. I believe with every flair he will YOYO" my meds. Thanks
..."your thyroid is really screwed up"... "Screwed up" is a technical term, didn't you know that? Google "screwed up thyroid" for further details!!! LOL
You're right, April is way too long to wait. If you've been on 90 mg for five weeks, you could really have labs now.
Here's an analogy for your doctor:
Last summer it was 100-degrees outside (your FT3 and FT4 were very high and you had hyper symptoms). Your doctor had you wearing a parka because he was afraid you were going to be cold. You got too hot and had to take the parka off.
Now, it's winter, and it's zero outside (FT4 on the floor, FT3 still low, hypo symptoms). Now you need your parka back because you're cold. Your doctor says, no, no, I'll never give you that parka back again because it makes you hot.
You have to look at the whole picture. Tell your docotor that I don't think the "wires are quite touching" in his brain...also a technical term! Just kidding, of course.
After a Hashi's flair, it's not unusual to required MORE thyroid meds once it's over. The flair caused further destruction of thyroid function, so it stands to reason that you become more hypo. If your dotor had lowered your meds more conservatively, you might not have had to go so hypo and spend so much time getting back to where you need to be.
See if gimel knows anyone in your area. If not, you might try posting a new thread on the forum. Get your city and state in the headline so members in your area can respond. MH frowns on doctor recommendations on the open forum, so members would have to respond to you by PM.
You're right, April is way too long to wait. If you've been on 90 mg for five weeks, you could really have labs now.
Here's an analogy for your doctor:
Last summer it was 100-degrees outside (your FT3 and FT4 were very high and you had hyper symptoms). Your doctor had you wearing a parka because he was afraid you were going to be cold. You got too hot and had to take the parka off.
Now, it's winter, and it's zero outside (FT4 on the floor, FT3 still low, hypo symptoms). Now you need your parka back because you're cold. Your doctor says, no, no, I'll never give you that parka back again because it makes you hot.
You have to look at the whole picture. Tell your docotor that I don't think the "wires are quite touching" in his brain...also a technical term! Just kidding, of course.
After a Hashi's flair, it's not unusual to required MORE thyroid meds once it's over. The flair caused further destruction of thyroid function, so it stands to reason that you become more hypo. If your dotor had lowered your meds more conservatively, you might not have had to go so hypo and spend so much time getting back to where you need to be.
See if gimel knows anyone in your area. If not, you might try posting a new thread on the forum. Get your city and state in the headline so members in your area can respond. MH frowns on doctor recommendations on the open forum, so members would have to respond to you by PM.
I'm so glad you understood my post. Thank you. I like the analogies! It makes sense that I would feel worse after an attack . Is it possible that the 15mg. may bring up my levels over time? Yes,he lowered it so drastically, now I'm back to where I started. I feel sick with every dose adjustment, so sensitive to meds since I was pulled off presc. benzo'z cold turkey. That's when this autoimmune condition showed up.... I accidentally logged out and can't retrieve gimmls entire message. [He doesn't know anyone in my area though] It now says my user name/password is invalid. I'm not to good with online stuff. Just learning. HELP
The 15 mcg will bring up your levels. You've been at 90 for 5 weeks, so the 90 mcg dose should just about have finished raising you levels as much as it's going to.
If you go to your Inbox at the top right of the page, and click on it, you should be able to see gimel's message and open it.
You are logged in, or you wouldn't be able to comment. Maybe it's telling you your name/password is invalid because you're already logged in???
If you go to your Inbox at the top right of the page, and click on it, you should be able to see gimel's message and open it.
You are logged in, or you wouldn't be able to comment. Maybe it's telling you your name/password is invalid because you're already logged in???
Log in fixed itself late yesterday. I can't believe he is going to leave me @ 90mg. til April, while so symptomatic. He has not responded to my Email, pleading for another 15mg increase. My cholesterol is around 400 and it has gone down with med increases. He wants me to take prescription fish oil as I can't take the statins. My metabolism is so slow, I'm so puffy and can't lose even 1 pound, gained 11 lbs in 8 days, when this started and a total of 30 in three months, very uncomfortable! I'm afraid I'm going to have a stroke or heart attack. He's on the top doctor list too!
Well, I don't believe he's going to leave you like this until April, either.
Can you make an appointment to see him sooner and ask for a lab order? It's harder to ignore you when you're sitting in his office than in an email.
Yes, your cholesterol should come down when you're less hypo.
So much for the list...
Can you make an appointment to see him sooner and ask for a lab order? It's harder to ignore you when you're sitting in his office than in an email.
Yes, your cholesterol should come down when you're less hypo.
So much for the list...
Yes , I think if I haven't gotten an email from him by Monday, I'll make an appointment, ask for labs, memorize the "Parka" scenario and explain that I believe he has a "short cicuit "in his brain and see if I can get a med increase based on symptoms. Ya gotta laugh to get by in this world! I'll let you know what happens. Thanks for everything!
You seem so knowledgeable ,I need your opinion,if you don't mind. Realized i've been feeling so jittery, lately. Seems, in general,that since I started treatment [10 mos ago] it has increased my heart rate, especially bothersome when trying to sleep. It pounds hard and can feel and it's in my ears. It can be in the 70's-90's. Never gets below 70. Worse lately, my temp was 96.3! Blood pressure always low. Stomach distention is always there and presses near my chest which makes it hard to breath too. I Can this be actually due to hypo? Is this part of having Hashi's or does this improve with proper treatment? When I tell the doc, he says I have a Panic Disorder! Same symptom when I was hyper, though. Is this common? I have 10mg. propranolol from heart doc[I had extensive testing ] I take this at times.Isn't effecting the FT3 reading at this dose. What do you think? No sleep again tonight. Thank you, Emily
Hi Faith63,
Don't loose hope. I had Hashimoto's and had to have my thyroid and part of my parathyroid removed (over 3 years ago) and have been in rather good health ever since. The improvement was dramatic and immediate. Only just recently (last 3 months) have my levels (TSH and free T3 & T4) acted up a bit but I think that this will resolve itself shortly. You might want to consider seeing an endocrinologist. They will conduct a few additional tests (sestamibi scan, ultrasound, etc.) to determine the extent of disease of your thyroid and the possibility of your parathyroid being affected. Given this information, then you can decide is the possibility of surgery is in order. Don't fret if surgery is suggested but only you can decide if this option is viable for you. Keep tuned to this forum and people like myself and goolarra will be there for you. (Thanks go to goolarra for their comments to my ?'s also).
Don't loose hope. I had Hashimoto's and had to have my thyroid and part of my parathyroid removed (over 3 years ago) and have been in rather good health ever since. The improvement was dramatic and immediate. Only just recently (last 3 months) have my levels (TSH and free T3 & T4) acted up a bit but I think that this will resolve itself shortly. You might want to consider seeing an endocrinologist. They will conduct a few additional tests (sestamibi scan, ultrasound, etc.) to determine the extent of disease of your thyroid and the possibility of your parathyroid being affected. Given this information, then you can decide is the possibility of surgery is in order. Don't fret if surgery is suggested but only you can decide if this option is viable for you. Keep tuned to this forum and people like myself and goolarra will be there for you. (Thanks go to goolarra for their comments to my ?'s also).
One of the problems with treating by symptoms is that many symptoms "cross over", and you can have the same ones whether a little hypo or a little hyper. The symptoms you list all can be due to hypo. It's not part of Hashi's. If your meds are properly adjusted and you're no longer hypo, there should be no more symptoms.
Do you take your propranolol regularly or just as needed? I've been on another betal blocker (atenolol) ever since starting meds, but I take it every day. I think beta blockers are more effective if they build up in your system. I'd never have been able to do the increases without the beta blocker. Once you get on a proper dose of thyroid meds, you might be able to d/c the propranolol (you have to wean off).
Do you take your propranolol regularly or just as needed? I've been on another betal blocker (atenolol) ever since starting meds, but I take it every day. I think beta blockers are more effective if they build up in your system. I'd never have been able to do the increases without the beta blocker. Once you get on a proper dose of thyroid meds, you might be able to d/c the propranolol (you have to wean off).
I 'm so very glad I came to this forum and cried when I read that you will be there for me. You wouldn't believe how alone I have felt and have been home bound for years.. My doctor IS an endocrinologist! He say's my thyroid is almost gone by touch alone, I believe based on symptoms I've had this for many years. My Gp thought it was mental and put me on large doses of benzo's and anti depressants. Only my TSH was checked 2x in 20 years. Endo. has never mentioned tests other than blood, but I'm aware of them. I have a high Serum Serotonin Level {carcinoid syndrome?], which he says is the cause for many symptoms, although my thyroid levels are low. I have had c/t scans and x rays looking for tumors and nothing has been found. Other tumor markers are negative. I'm in protracted benzo withdrawal as wee and it is very confusing. I'm not sure what symptom is what. Blood work has let me know I'm hypo, but he thinks tests ok. He says the beta blocker will raise the T3 and make me fatter! He doesn't think they're necessary and I don't think he'll refill them. I take them as needed , 1x day, my BP is low. I better see if he will refill or i'll end up with a cold turkey. I do feel hopeless often and I do wish I could have my thyroid removed. I wish one of you lived nearby, you are so sweet and kind. What to do next? Thank you!
Well, you have a number of things going on, and it is hard to sort through all of them. However, you do know your current thyroid levels, and you are hypo, so you have to work on that and see what symptoms it resolves...you might be amazed at how many actually are thyroid...I was.
My PCP once told me that taking atenolol was going to require me to take more thyroid meds, which was going to require me to take more atenolol, ad nauseum...talk about depressing! However, when I started seeing my endo, he said this was NOT true. As you raise your dose of thyroid meds, you may have to raise your dose of beta blocker (I did), but that does NOT require you to take more thyroid meds.
I don't think the BB will raise your T3, and raising your T3 should make it easier for you to control your weight, not more difficult.
I've heard that atenolol is the BB that interferes least with thyroid meds. Maybe your cardio would consider switching you to atenolol?
"He say's my thyroid is almost gone by touch alone, I believe based on symptoms I've had this for many years. " Once your thyroid is completely "dead", and it sounds like yours probably is (my endo and I think mine is, too), then there's usually even less reason to remove it than there was when it was in the process of dying. Once your thyroid is no longer producing hormones, and you're on 100% replacement, Hashi's becomes much more stable and easier to manage.
Of course, there are tests that will tell you exactly how much thyroid function you do have left.
My PCP once told me that taking atenolol was going to require me to take more thyroid meds, which was going to require me to take more atenolol, ad nauseum...talk about depressing! However, when I started seeing my endo, he said this was NOT true. As you raise your dose of thyroid meds, you may have to raise your dose of beta blocker (I did), but that does NOT require you to take more thyroid meds.
I don't think the BB will raise your T3, and raising your T3 should make it easier for you to control your weight, not more difficult.
I've heard that atenolol is the BB that interferes least with thyroid meds. Maybe your cardio would consider switching you to atenolol?
"He say's my thyroid is almost gone by touch alone, I believe based on symptoms I've had this for many years. " Once your thyroid is completely "dead", and it sounds like yours probably is (my endo and I think mine is, too), then there's usually even less reason to remove it than there was when it was in the process of dying. Once your thyroid is no longer producing hormones, and you're on 100% replacement, Hashi's becomes much more stable and easier to manage.
Of course, there are tests that will tell you exactly how much thyroid function you do have left.
I am also in the greater Cincinnati area... I sent you a PM... hope you are able to get into your inbox.
Thank you. Sounds hopeful. Yes the symptom list is huge, effecting every part of the body. stopthethyroidmadness and Broda Barnes book, Dr. Lowe is where I got most all info. Doc has said very little.I wish I wasn't treated like "a nervous female" This is not in my head! Why do you think there is this need for beta blockers to remain comfortable? What is this lumpy fat stuff , Mucin? I had been slim for 47 years and BAM! I know my doc doesn't realize that this is very unusual for me and that I am actually overweight. I'm only 5'1 with little bones , was 105, now 128 or so. I miss life so. What are the tests that show how much thyroid is left? Thanks again, Emily
Yes, what an image, huh? Nervous female...sounds like something that ought to afflict a race horse!
I have a congenital heart defect that has caused me to have episodes of tachycardia all my life. MY PCP swore thyroid meds weren't going to affect it...wrong. T3 receptors in the heart react to T3. When I was increasing meds to try to get to a stable dose, I would have sworn that the more thyroid meds I took, the worse the heart symptoms were going to get. However, once I got on a stable dose (I've been on the same dose for over 2 years now), my tachycardia has been the best it's been since I was about 8 years old. I haven't had an episode (knocking on wood) now for 20 months. So, i do think that it's a process of adjustment.
I don't know about the lumpy fat...cellulite???
Once you get your thyroid hormones on track, you'll have an easier time taking off the excess pounds. I fought my weight all my life, mostly successfully...you're lucky to got 47 years! I'm jealous.
Have you had a thyroid ultrasound? That gives a pretty good image of the physical characteristics of your thyroid. It's relatively inexpensive (as imaging goes). RAIU is more involved and requires being off thyroid meds for close to 6 weeks before you can do it. It actually shows your thyroid "working" (or not). I don't know how much information of any value either of those would add if you thyroid is so far gone that your doctor can tell with his bare hands.
I have a congenital heart defect that has caused me to have episodes of tachycardia all my life. MY PCP swore thyroid meds weren't going to affect it...wrong. T3 receptors in the heart react to T3. When I was increasing meds to try to get to a stable dose, I would have sworn that the more thyroid meds I took, the worse the heart symptoms were going to get. However, once I got on a stable dose (I've been on the same dose for over 2 years now), my tachycardia has been the best it's been since I was about 8 years old. I haven't had an episode (knocking on wood) now for 20 months. So, i do think that it's a process of adjustment.
I don't know about the lumpy fat...cellulite???
Once you get your thyroid hormones on track, you'll have an easier time taking off the excess pounds. I fought my weight all my life, mostly successfully...you're lucky to got 47 years! I'm jealous.
Have you had a thyroid ultrasound? That gives a pretty good image of the physical characteristics of your thyroid. It's relatively inexpensive (as imaging goes). RAIU is more involved and requires being off thyroid meds for close to 6 weeks before you can do it. It actually shows your thyroid "working" (or not). I don't know how much information of any value either of those would add if you thyroid is so far gone that your doctor can tell with his bare hands.
Wish I was a race horse, I'd just tie myself to a tree and...Don't be jealous of 47 years of slim it just makes it that much harder to take, I think. Again sounds, encouraging and I'm glad your doing so well. What a shame so much life spent feeling so bad when it all could have been corrected much quicker. I had this lumpy fat come on in 11days. I think its some kinda fluid. No thyroid ultra sound, maybe I should ask. I don't know. Maybe the heart thing will improve soon as meds are ok for me too. Did you ever get blurry vision? It scares me! Im going to go in and see the doc if the emails don't work.He did respond he said "be patient,relax" I explained that not agreeing on treatment makes me upset that my life is at stake here! I really hope , if I can get stable, then I won't have to keep contacting him. Just stay on Armour and be done with it. This is all so awful. Thanks
Check out myxedema...not myxedema COMA, just myxedema. Perhaps that's what your lumpy fat is???
I have never gotten blurry vision, but I know it can be a symptom.
It couldn't hurt to request a U/S just to see where your thyroid's really at.
I have never gotten blurry vision, but I know it can be a symptom.
It couldn't hurt to request a U/S just to see where your thyroid's really at.
Yes , sounds like myxedema. At this point i'll go in and try and educate this doc and see what happens. I just can't imagine going on the search again at this moment. Emails with him seem to cause miscommunication, has happened before.Were do these doctors get their education, anyway? Seems like so many are having a terrible time and staying sick longer than they have too. Your lucky if you can even get the proper tests. It's all very cruel! I'm so glad I found this forum, I don't feel so alone anymore. Thanks , I'll let ya know what happens.
Lots of doctors never pick up a medical journal. It is very frustrating, and I'm quite sure it's not limited to thyroid treatment. We understand thyroid treatment, so we know how bad that is. My guess is that it's pervasive in medicine these days.
In med school, they've been taught for years that TSH is the "gold standard" in thyroid care. Some have allowed FT4 to creep in, fewer still FT3. They're on auto pilot treating patients. Treating by the numbers is less messy than having to deal with symptoms (so subjective!), AND it keeps them out of court. It's a mess...
In med school, they've been taught for years that TSH is the "gold standard" in thyroid care. Some have allowed FT4 to creep in, fewer still FT3. They're on auto pilot treating patients. Treating by the numbers is less messy than having to deal with symptoms (so subjective!), AND it keeps them out of court. It's a mess...
I agree. You seem very knowledgeable and well spoken. You've been such a great help! Oh, the doc said to get labs done and come in for an appointment. Step in right direction! How do you think I should explain the need to go up if labs aren't much improved? Like the Ft3 being in upper end and Ft4 in mid to upper? Also, not to be afraid to increase because I went hyper last time at 105. He believes I was toxic, with over dose. Does he even understand Hashi's swings? I really need to do this right, my life is at stake here!
Thank you, for your help [your so good at wording things]
Thank you, for your help [your so good at wording things]
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