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    Old 03-11-2005, 08:16 PM   #1
    Peeps
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    Question New Labs before appt. What do you think?

    Hi All,

    I just had labs done before seeing the endo on Monday. I would like to run them by you for input, please.

    I was started on cytomel 6 months ago. The endo only lowered my synthroid from 100 to 88 mcg and started me on 25 mcg cytomel. I left the appt without looking at the dose and he didn’t tell me. When I saw the dose, I ‘knew’ it was too high to start on. I cut the pill in half and after 3 months my internist was running routine labs and checked TSH. He sent me a letter, saying I appeared to be over medicated (TSH .04) on thyroid meds. I agreed, not because of the number, but because of the side effects I was having, very excessive sweating and feeling too ‘ramped up.’

    I decided to stop the cytomel at that point. I felt a 5 mcg dose would have been the starting dose that might have worked for me. At that point, I just wanted off it all together for a bit (busy with the holidays, traveling, etc). After a month of being on the 88 mcg of synthroid alone, I knew it wasn’t enough. I was having increasing hypo symptoms, dragging a lot more, my eyes were puffy when getting up, etc.

    I called the endo’s office and his nurse called in an Rx for 5 mcg of cytomel. I have been feeling much better on that dose.

    Here are my labs just done, after 2 months of starting on the 5 mcg cytomel:

    TSH: .52
    FT4: .70 (.58-1.64)
    FT3: 4.63 (2.39-6.79)


    My FT4 just does not rise much. Before starting any treatment it was .44. The highest it has gone was 1.04 when I was on 112 mcg of synthroid and feeling overmedicated (TSH .03) and we needed to lower the dose to 100 mcg. My FT4 has consistently stayed low over treatment. I started thyroid treatment a year ago. However, I don’t feel my endo has the same opinion that it is too low. So, I have that element to deal with also. I think he will probably feel all these numbers look good right now.

    If my calculations are right, the upper 1/3 for FT3 would be: 5.47 (currently at 4.63)
    And for FT4 would be: 1.32 (currently at .70)

    As far as how I am feeling, after all the different dosages tried over the past year, starting with T4 (synthroid) alone and then adding T3 (cytomel), the dosing and combo I am on right now feels the best – I feel we are getting closer! However, I feel there is probably room for improvement, as I still require the daily low dose of ultram to treat fatigue and pain (have had a diagnosis of fibromyalgia/myofascial pain syndrome for 14 years). SO, it is hard to know if I can still feel better by tweaking my thyroid meds and/or changing to a combo of Armour and T4. Perhaps I am one that just can't get my numbers to the middle of the range (my FT3 is close), let alone the upper third, without being overmedicated?? Is that sometimes the case?

    And, just as an FYI, I am now also dealing with a new diagnosis of diabetes, which may be entering into how I am feeling also. There’s always something to muddy up the waters more, isn’t there?! I guess the endo and I will have more to discuss. He has felt I have been heading this way since first seeing him and had actually prescribed oral meds, but I have been holding off on them (which he agreed), for several reasons, one being elevated liver tests over the past year also……it just keeps piling on……hittin’ 50 has been interesting!

    What do you think about my thyroid numbers? Any suggestions for getting the FT4 up, without becoming overmedicated? Every time we lower the dosage on my meds, when I feel overmedicated, my FT4 drops also. My FT3 has only been checked prior to starting treatment (4.49), and now a year later (4.63), so I don’t have much to go on there. For some reason, this Top Doc endo does not check FT3. I actually got my internist to order it instead, as I really felt it was important to know, especially after playing around with the cytomel for 6 months. The endo only checked the total T3 (for some reason instead of FT3??), before I started cytomel, which was 1.19 (.87-1.78), less than in the middle of the range.

    Thanks so much for your input!

    Peeps

     
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    Old 03-11-2005, 10:08 PM   #2
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    Re: New Labs before appt. What do you think?

    Ah, no.... Getting older is not for the feint of heart, is it?

    Hi again, Peeps. The old whiz kids who were so good at determining doses don't come around here as much, but there are new whiz kids taking over who might be able to help. I never was good at that. But that won't stop me from saying my piece... lol.

    With your 88 mcg Synth. plus 5 mcg T3, you're getting the equivalent of 108 mcg T4 only. When you took 12.5 mcg T3, you got the equiv. of 138 mcg T4.
    Since the 138 was too much, but the 108 seems perhaps not quite enough, maybe it would help you feel better and boost your T4 if you would increase your Synth. to 100. That would be a modest increase, having the power of 120 mcgs, but it might be enough to make a difference in the way you feel.
    When it's all said and done, I believe the numbers should only be used as a guide, and that the way we feel is most important. Anguishing over the math is futile and frustrating, I think.

    Good luck with the diabetes. My DH was diagnosed just before Christmas. We've been cutting refined carbs and portion sizes, so I've lost a modest amount of weight. Thankfully, he's doing better than I. But it ain't easy gettin' old. aaarrgh It is better than the alternative, as they say.

     
    Old 03-13-2005, 03:32 PM   #3
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    Thanks Midwest!

    Hi Midwest!

    Thank you for your help, AGAIN!! It’s so nice that you are always here helping so many! I appreciate ‘you!’

    Thank you for doing the math and for the suggestion; I think it sounds like a good idea. I will make the suggestion to the endo, if he doesn’t come up with it on his own. If he felt 25 mcg of T3 was okay, then I would think adding just 12 mcg of T4 to the lowered dose of 5 mcg T3, should not warrant any disapproval. I have 100 mcg meds left too, since I was on that before he added the cytomel originally. I have quite a stash of thyroid meds, with all the changes in dosing along the way, as I imagine many here have the same situation.

    Quote:
    “When it's all said and done, I believe the numbers should only be used as a guide, and that the way we feel is most important. Anguishing over the math is futile and frustrating, I think.”
    I agree; it was my thought also. It’s so hard to determine if one could feel better when you are so used to not feeling good/right. You lose sight of what ‘good/normal’ is! I guess that in that respect, the numbers might be helpful as a guide to shoot for to see if one can feel better if you can get those numbers in a better range, but if not, then maybe that is telling me that it is as good as it gets for me. I am willing to continue to experiment with meds and dosage to see, but I would like to have it monitored more closely than I am getting from this endo.

    A good example of the above, is my endometriosis. I was hoping menopause would come years ago, in hopes that it would improve that situation. The pain was awful for most of my life. NOW, I am finally realizing that wish and it has been a Godsend in terms of my endometriosis. Menopause does not bring relief for everyone with the disease, but so far I have been blessed. It is only now that I can ‘realize’ what it is like, what it feels like, to live without that pain. You truly do forget how one should feel, ‘what is normal.’

    Fatigue (and muscle pain) is my biggest problem and unfortunately it is a symptom of so many problems, it’s certainly hard to know which conditions may be contributing and could possibly be improved by changing meds, or lifestyle, etc.

    I am sorry to hear about your husband’s recent diagnosis of diabetes. It sounds like he is making the necessary changes. Hey, that’s a nice bonus, that those changes are helping you too! I am doing the same. I have gotten serious about changing my eating and exercise. So far, it is going very well, but I am very early into it. It was not a surprise diagnosis for me, as it has been knocking on my door for some time and there is a lot of diabetes in my family, on my dad’s side. I am eating a lot healthier now, trying to take off weight, and exercising. I am excited about being able to exercise again. Another thing endometriosis robbed me of being able to do. We have a new treadmill, which is very nice and I like using. Only 'fly in the ointment' is that my right hip/leg are having problems, so I am hoping that doesn’t interfere too much. It was very bad before I started using the treadmill, had an acute flare of it and then got over it and started the treadmill slowly. But now that I have tried to increase my speed and distance, it has started to affect it.

    I asked my local doc (internist) for a referral to a diabetes dietician and I am looking forward to that appt this week. I have been charting everything I have been eating and hopefully that will help her make suggestions if there are places I can improve upon. It is getting trickier and trickier to eat and take meds these days when trying to space things and trying to keep my blood sugar more stable, etc. My doc told me to take 1500 mg of calcium daily. It isn’t possible, with the thyroid med, since the calcium is supposed to be taken with meals, no more than 500 mg at a time and can’t be taken too close to the thyroid meds. Having some meds that have to be taken with food, others without food, others spaced from one another, trying to lose weight, eat right, not eating carbs alone to stabilize blood sugar, etc, it is becoming more complicated. Fortunately, my head is in a good place about it all and I am looking at it as a ‘positive’ challenge and taking it on. My goal is to control the diabetes with diet and exercise and stay off meds. However, the endo was ready to put me on them some time ago, he felt I might have insulin resistance and knew that I did have prediabetes and he also felt the meds might help me to take off weight then, if I had insulin resistance. It will be interesting to see what he says this time around, now that my fasting glucose has continued to rise, since I last saw him. I was leery of taking the meds for a couple of reasons, had heard they can be really hard on one’s stomach and I already had problems that way (which have improved considerably with the improvement of the endometriosis though) and also because my liver function tests have been elevated for the past year and glucophage/metformin can be hard on the liver.

    Is your hubby on diabetes meds? I wish him good health and success controlling the situation!

    I hope you are doing well? How is the muscle pain? Did you bump up your Armour by ½ grain last spring? If so, did it help? I hope you are seeing improvement since we last corresponded?! You mentioned before that your doc said the insurance makes him call your body aches something, so it gets labeled fibromyalgia. YES, it is sad that we have to have an insurance code for everything and if a code doesn’t exist, then either does the condition – such is the case I was reading about ‘adrenal fatigue’ too. There is no such insurance code for it, so it doesn’t exist. My am cortisol level was near the bottom of the ‘normal range’ and according to some literature, too low, labeled as adrenal fatigue, but no code for that one. I have read that low cortisol can enter into thyroid treatment and should be treated first, so another area that I feel could be entering into the equation for me, but don’t know. I was going to try to ask the endo his thoughts on that at this appt, we’ll see if I get to it. He was the one that ordered the test months back, but never said anything about it, other than to send out a postcard with my lab results and list it as normal.

    Quote:
    But it ain't easy gettin' old. aaarrgh It is better than the alternative, as they say.
    LOL, I second that! Thanks for the laugh! And thanks again for your response.

    Well, I better stop yappin’ and write up my notes for my appt tomorrow.

    Take care, Midwest!

    Peeps

     
    Old 03-13-2005, 10:57 PM   #4
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    Re: New Labs before appt. What do you think?

    Ohmigosh... either your memory is amazing or you searched the archives for our old notes to each other. You're kind to ask about me.
    I'm still on 120 mgs, and the remainder of achiness that the last increase didn't completely erase is still with me. For the last few days, I decided (on my own) to add an extra 15 mgs to my daily dose, just to see what would happen. Already, I'm not quite as achy in the morning nor at the end of the day, and I have no hyper signs at all. If this works until I see the doctor at the end of the month, I'll be afraid to tell him what I've done. Don't know how he'll react to self-dosing, and I don't want to lose his trust. I'm sure you know how hard it is to find a good professional to work with.

    My hubby's diabetes is apparently a mild case at this time. He takes metformin, and so far it hasn't given him any trouble. I wasn't aware it can cause liver complications... that scares me a little, as he takes a statin, which is also hard on the liver. Yikes. His log of glucose readings for two months shows very few spikes above the "good" or "excellent" levels. It's hard to know whether his improved diet, his 12-lb weight loss, or the metformin is doing the job for him. He goes for his first follow-up since Dx in a week or two... we are curious about what the next step will be. Diabetes seems so much more complicated than thyroid! I have a lot to learn about it.

    I know what you mean about fitting all those supplements into a day's time. I try to divvy up my calcium between lunch, dinner, and bedtime... but remembering all those doses is the problem. I miss more than I ought to.

    I don't know much at all about adrenal trouble. It seems, though, that people with significant trouble have a hard time tolerating thyroid meds at all... and that doesn't seem a problem for you. So perhaps, the test results of "normal" cortisol can be believed?

    So glad your endometriosis is resolving! Hopefully, your thyroid will too. Your attitude toward the diabetes is upbeat and determined, so you'll probably have that under control lickety split. You'll be a whole new woman by Thanksgiving... lol

    It's nearly 1 a.m. here... Gotta get some sleep.
    Let me know how the appt goes.
    MW

    Last edited by midwest1; 03-13-2005 at 10:59 PM.

     
    Old 03-13-2005, 11:20 PM   #5
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    Metformin - Liver

    Hi Midwest,

    I was just going to shut down the PC and saw your reply. My eyes are closing on me and my brain is turning to mush at this point, so I am going to keep this really short. I will write more later........but I just wanted to quickly reply that I don't know if the Metformin is a concern if one isn't showing any liver problems. In my case, my ALT and AST are already elevated, have been for a year now and we don't know the cause. Just didn't want you to worry about your hubby needlessly. It may be something you would want to look into, however, if you are concerned about his liver health.

    There was a diabetes drug called Rezulin that was taken off the market. Severe liver toxicity had been known to occur with Rezulin since 1997.

    Some info on Metformin:

    If you have liver or kidney problems of any kind, metformin could pose a problem, because it alters liver function and is excreted through the kidneys. A healthy liver and kidneys will improve your outcome with metformin. Liver and kidney function should be assessed before starting metformin and rechecked at least once a year while taking it. A blood chemistry screen and a complete blood count will tell your physician how well your system is doing with this drug.

    I'll write when I get back from my appt........and reply to the rest of your message.

    Peeps

     
    Old 04-02-2005, 01:14 PM   #6
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    Update on appt

    Quote:
    Originally Posted by midwest1
    Ohmigosh... either your memory is amazing or you searched the archives for our old notes to each other. You're kind to ask about me.
    I'm still on 120 mgs, and the remainder of achiness that the last increase didn't completely erase is still with me. For the last few days, I decided (on my own) to add an extra 15 mgs to my daily dose, just to see what would happen. Already, I'm not quite as achy in the morning nor at the end of the day, and I have no hyper signs at all. If this works until I see the doctor at the end of the month, I'll be afraid to tell him what I've done. Don't know how he'll react to self-dosing, and I don't want to lose his trust. I'm sure you know how hard it is to find a good professional to work with.

    My hubby's diabetes is apparently a mild case at this time. He takes metformin, and so far it hasn't given him any trouble. I wasn't aware it can cause liver complications... that scares me a little, as he takes a statin, which is also hard on the liver. Yikes. His log of glucose readings for two months shows very few spikes above the "good" or "excellent" levels. It's hard to know whether his improved diet, his 12-lb weight loss, or the metformin is doing the job for him. He goes for his first follow-up since Dx in a week or two... we are curious about what the next step will be. Diabetes seems so much more complicated than thyroid! I have a lot to learn about it.

    I know what you mean about fitting all those supplements into a day's time. I try to divvy up my calcium between lunch, dinner, and bedtime... but remembering all those doses is the problem. I miss more than I ought to.

    I don't know much at all about adrenal trouble. It seems, though, that people with significant trouble have a hard time tolerating thyroid meds at all... and that doesn't seem a problem for you. So perhaps, the test results of "normal" cortisol can be believed?

    So glad your endometriosis is resolving! Hopefully, your thyroid will too. Your attitude toward the diabetes is upbeat and determined, so you'll probably have that under control lickety split. You'll be a whole new woman by Thanksgiving... lol

    It's nearly 1 a.m. here... Gotta get some sleep.
    Let me know how the appt goes.
    MW
    Hi Midwest and All,

    Finally getting back to update. I have been busy with trips out of town and my sons and their girlfriends, from out-of-town visiting us. The last 'shift' of company just headed home Thurs.

    I saw my endo and he said all thyroid tests looked good. I asked him if the FT4 wasn't too much on the low end and he said it could be higher, but his comment was that "T4 is affected by other things - so one can't look solely at that and feel it needs to be higher." For being on the Top Doc list, it was surprising and disappointing to hear him express his thinking on TSH being the key to telling us what was going on. As time has passed, I have come to question his approach more, sadly. He is said to be one of the best endos for the area (both by the medical community and thyroid patients that have recommended him), so it is disappointing. He moves patients in and out like they are on a conveyer belt.

    I have always had to bring up my concerns, when he doesn't comment on things I feel are pertinent, areas that I feel he should be addressing and then he considers them and ends up agreeing. For example, I asked about my am cortisol being near the bottom of that range. That test was performed last July. When he heard my comments, he agreed it was on the low end and warranted being retested, but is going to wait until I have my thyroid labs done, another 3 months. I should have questioned 'why wait?!' but he rushes you in and out so fast, that I didn't get a chance to even think about that part of it, just was happy he agreed it should be retested, at the moment.

    He was going to conclude the appt. with saying my thyroid levels looked fine when I pointed out that we had decreased my cytomel from his original (TOO High) dose of 25 mcg down to 5 mcg and that maybe increasing my synthroid would help boost my FT4 and help me feel better. He said it made sense to do that and increased it from the 88 back up to the 100 mcg it was at before he reduced it when adding the cytomel. Thanks for your suggestion on upping the sythroid to 100 mcg, Midwest, it helped me to present that suggestion to him!

    So far, so good, on the increase in dose. I have not felt over medicated so far. I have stayed on the 5 mcg of cytomel along with the 100 mcg of synthroid. I hope it helps increase my metabolism. The weight is just so slow coming off, despite my big diet changes (low carb, low fat, low calorie, small portions) and exercising, however, I have to be more consistent with my exercising. I hope to be, now that things are back to normal with no house guests and no traveling.

    BTW, I replied to your post about your hubby and Gatorade on the other forum. I am glad to hear he is doing so well with his diet and weight loss. I am doing really well with my eating, but feel the weight is not coming off like it should for the changes I have made. That part is frustrating, but I'm not going to let it deter me. I can't, with blood sugar problems!

    Have you had any problems with the calcium supplements? I think mine was causing the stomach upset I was having. If I don't take it with a FULL meal, I have problems, so I can only manage to get one calcium chew that way I only eat 2 'full' meals a day and the first one is an hour after I take my thyroid meds, so can't take the calcium chew then. I take one with my dinner, and tried a couple times to take a 2nd one when I ate a snack, but each time got sick from it. The dietician I spoke with said calcium can do that. My doc recommended 1500 mg a day (3 chews) but 500 is the most I can work in. AND I wanted to increase my calcium in my diet, but that also gets in the way with my carb restrictions for my blood sugar, so that isn't an option either. It sure is getting tricky with all these eating issues and restrictions

    How are you doing now, Midwest? Have you seen your doc (you said the end of the month, so assuming you have)? Any problems with the thyroid increase you made on your own - your doc's attitude about that, if you stayed on it and had to 'fess up' LOL. I know EXACTLY what you mean about all of that! Just like me knowing the cytomel was too high the endo put me on and having to tell the nurse I cut it in half from the start and it still was too much. It's too bad that we have to feel leery about doing what our bodies and research are indicating! I am anxious to hear how you are doing and if you have stayed on the increased dose, etc. Update me when you get a chance, please.

    Take care!

    Peeps

     
    Old 04-03-2005, 12:55 PM   #7
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    Re: New Labs before appt. What do you think?

    I must say your doctor's approach has its pluses and minuses. At least you get what you want in the end, but it would worry me a bit that he has few solutions unless you supply them .... but then he readily approves what you suggest. I feel sorry for his patients who don't come prepared with their own answers. And I find it really amusing that my suggestion for dosage is the one you ended up with... Maybe I should hang out my "thyroid" shingle... LOL
    I'm glad you're tolerating the new dose OK. I hope, too, that it will help with your weight loss. You have other mitigating conditions that are probably complicating things in that regard. Since I've been eating much less white flour and sugar along with DH, I've lost about 7 lbs without even trying to. That would never have happened 2 years ago; in fact, just before I figured out I was hypo, I worked like a fiend on the treadmill trying to lower my high LDL and only lost 4 lbs in 6 months! Now I don't formally exercise at all, and it's coming off with minimal diet changes.

    I know exactly what it feels like to think of questions after the MD has rushed out of the room. I just don't think that fast on my feet. You must be a comtemplative sort, like me.

    The doctor I see is such a gem. He allows a half hour for every follow-up visit, so I never feel rushed. We usually don't even use the entire time. I saw him last week. When he entered the room, I said, "I'm only here because you told me to come. I don't know what we're going to talk about." LOL That's because I feel pretty much like myself. Things might change eventually, but I think my thyroid is pretty much where it needs to be for now.

    The extra 15 mgs didn't work out. After about a week and a half, I felt shaky and nervous... a sure sign that it was too much. Besides, it made little difference in the muscle aches. Since it was such a short experiment, and it didn't work, I chose not to let doc know anything about it. The achiness seems to have improved about 10% in the last three months anyway. I wonder if it could just be taking this much time for the muscle fibers to heal from their lack of T hormone... These things can take some months to resolve once the right dose is reached. And, truth be told, they probably would benefit from more genuine activity beyond just web-surfing.

    My levels haven't been tested since the last dose increase. I can only assume that my FT4 is still below mid-range. But since it's clear I can't tolerate more Armour, and he isn't comfortable combining it with additional T4, I won't squawk for now.

    My calcium isn't a problem, but then... my stomach isn't overly sensitive. I tend to be a "grazer"... eating 100-200 calories every couple of hours. So my stomach is hardly ever completely empty. You have a real dilemma getting enough, I can see. After DH's consultation with an RD, I was very surprised to learn that dairy is considered a carb food. Have you investigated eating the green vegetables that are high in calcium? I think they must be combined with some other type of food in order to absorb it... Don't really know much about that.
    Now the magnesium that goes with the cal is another story... It makes me gaseous.

    I haven't checked back on the Gatorade post yet. I'll go over there from here, although I won't have time to add to it now. TYIA for contributing.

    It's been so nice chatting again! I do hope you'll get all those assorted health problems in check soon, and that you have some weight loss success despite them.

     
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