opinions on symptoms and dosing
in [Thyroid]
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From: Linda Brown on 2 Oct 2005 22:18 I have been dealing with health issues for about a year now and in the Spring I was diagnosed with Hashimoto's. My First TSH was 3.4 UIU/ML (that was back in Jan and was labeled as normal and dismissed). The next two were 2.8 and 2.34. My Endo has upped my replacement dosage each appointment and I am now up to 100 mg. She is only seeing me every 3 months. After the last appointment and dosage increase I had a "good period" but then about a month later started feeling crappy again. Now 2 weeks after starting at 100 mg I am again entering a "good period". My worst symptoms are hand and foot pain (carpal and tarsal tunnel syndromes?) and when it is bad I can barely walk. At the end of this most recent "bad" spell my hips were involved too. My body temp is above 97 most days now which is progress for me, I have stopped lactating, anxiety is better and hair loss is better too. I am also taking anti-depressants (they have helped a lot), hydroxycloroquinine (in case it is lupus!!) and major pain meds (anti-inflammatory that don't seem to do much). Not to confuse the issue but I also have a 5mm pituitary microadinoma...my endo does not think it is currently causing any problems. So my question is this...my endo stated at my last appointment that it is time to "give up" on the idea that my joint/foot/hand pain is related to the thyroid issue. She suggested that even though my TSH levels had barely changed between the last two tests that I should be feeling better simply because I have been on the replacement therapy for a while now. Does this make sense? From everything I seem to be reading, each individual has a different "level" at which they feel well. If I felt crappy at 2.8, isn't is possible that I would still feel crappy at 2.34? and why would my last two periods of improvement have coincided with increased amounts of replacement hormones?!?!? Everything I have read has suggested that this is a slow process but if that is true then I don't understand why my TSH has moved so little. My endo made it sound like they original amount of 50 was "no small amount" and now I am up to 100. Does that make sense? Could the pace of my thyroid deterioration be keeping up with the dosage increases? I guess I am holding out hope that I don't have a degenerative nerve or joint disorder, but my rheumatologist is stumped too. I just don't fit under any other diagnosis other than hypothyroidism. Has anyone else had the joint pain and muscle aches as their major symptom? Do I have to keep moving up at such slow dosing increments? Could I push my doc to try 150 next time instead of just going to 125 or is that too much? Should I push her to see me every 6 weeks? My endo does believe I should be aiming for 1.0 for TSH to feel my best so that is good but I was crushed to find out that she didn't think my joint pain was related. Thanks for any input or experiences you guys have!!! Linda
From: Herman Family on 2 Oct 2005 23:38 Linda, Firstly, your endo is on the right track by moving your dosage up gradually. You have a brief "honeymoon" period after each increase in part because your body suddenly sees a high t4 level and quickly converts it to more t3 than you have been used to. As the t4 levels come up, and your body gets better at using t3, the "honeymoon" effect goes away. You will notice that the "honeymoons" tend to even out with your body at a higher t4 level. That would help the tsh to drop. Increasing your dosage to 100 mcg/day isn't unusual. Somewhere between 100 and 200 mcg/day (probably 125 to 150mcg/day) is a full replacement dosage. You'll probably get up to 125 or 150 after a bit. While many of us have our aches and pains, she is probably right that the hand and foot pain is not related to the thyroid, at least directly. It might be due to a secondary cause, which would have to be corrected on its own. She might suggest that you see a bone specialist or rheumatologist. You could also have an issue with the muscles needing some physical therapy Seeing you every three months is a good schedule. The progress on the tsh is ok, perhaps not spectacular, but lets just say that spectacular isn't good with thyroid treatments. Upshot of this is that your doctor is doing a pretty decent job. Things will get better over the next visit or two as your dosage approaches her target. Michael "Linda Brown" <maxrabbit(a)hotmail.com> wrote in message news:gx00f.40330$tB5.11469(a)okepread06... >I have been dealing with health issues for about a year now and in the >Spring I was diagnosed with Hashimoto's. My First TSH was 3.4 UIU/ML (that >was back in Jan and was labeled as normal and dismissed). The next two were >2.8 and 2.34. My Endo has upped my replacement dosage each appointment and >I am now up to 100 mg. She is only seeing me every 3 months. > > After the last appointment and dosage increase I had a "good period" but > then about a month later started feeling crappy again. Now 2 weeks after > starting at 100 mg I am again entering a "good period". > > My worst symptoms are hand and foot pain (carpal and tarsal tunnel > syndromes?) and when it is bad I can barely walk. At the end of this most > recent "bad" spell my hips were involved too. My body temp is above 97 > most days now which is progress for me, I have stopped lactating, anxiety > is better and hair loss is better too. I am also taking anti-depressants > (they have helped a lot), hydroxycloroquinine (in case it is lupus!!) and > major pain meds (anti-inflammatory that don't seem to do much). > > Not to confuse the issue but I also have a 5mm pituitary microadinoma...my > endo does not think it is currently causing any problems. > > So my question is this...my endo stated at my last appointment that it is > time to "give up" on the idea that my joint/foot/hand pain is related to > the thyroid issue. She suggested that even though my TSH levels had barely > changed between the last two tests that I should be feeling better simply > because I have been on the replacement therapy for a while now. Does this > make sense? From everything I seem to be reading, each individual has a > different "level" at which they feel well. If I felt crappy at 2.8, isn't > is possible that I would still feel crappy at 2.34? and why would my last > two periods of improvement have coincided with increased amounts of > replacement hormones?!?!? > > Everything I have read has suggested that this is a slow process but if > that is true then I don't understand why my TSH has moved so little. My > endo made it sound like they original amount of 50 was "no small amount" > and now I am up to 100. Does that make sense? Could the pace of my thyroid > deterioration be keeping up with the dosage increases? > > I guess I am holding out hope that I don't have a degenerative nerve or > joint disorder, but my rheumatologist is stumped too. I just don't fit > under any other diagnosis other than hypothyroidism. Has anyone else had > the joint pain and muscle aches as their major symptom? Do I have to keep > moving up at such slow dosing increments? Could I push my doc to try 150 > next time instead of just going to 125 or is that too much? Should I push > her to see me every 6 weeks? > > My endo does believe I should be aiming for 1.0 for TSH to feel my best so > that is good but I was crushed to find out that she didn't think my joint > pain was related. > > Thanks for any input or experiences you guys have!!! > > Linda > > >
From: RacheliX on 3 Oct 2005 00:33 Linda Brown wrote: > I have been dealing with health issues for about a year now and in the > Spring I was diagnosed with Hashimoto's. My First TSH was 3.4 UIU/ML (that > was back in Jan and was labeled as normal and dismissed). The next two were > 2.8 and 2.34. My Endo has upped my replacement dosage each appointment and I > am now up to 100 mg. She is only seeing me every 3 months. > > After the last appointment and dosage increase I had a "good period" but > then about a month later started feeling crappy again. Now 2 weeks after > starting at 100 mg I am again entering a "good period". > > My worst symptoms are hand and foot pain (carpal and tarsal tunnel > syndromes?) and when it is bad I can barely walk. At the end of this most > recent "bad" spell my hips were involved too. My body temp is above 97 most > days now which is progress for me, I have stopped lactating, anxiety is > better and hair loss is better too. I am also taking anti-depressants (they > have helped a lot), hydroxycloroquinine (in case it is lupus!!) and major > pain meds (anti-inflammatory that don't seem to do much). > > Not to confuse the issue but I also have a 5mm pituitary microadinoma...my > endo does not think it is currently causing any problems. > > So my question is this...my endo stated at my last appointment that it is > time to "give up" on the idea that my joint/foot/hand pain is related to the > thyroid issue. She suggested that even though my TSH levels had barely > changed between the last two tests that I should be feeling better simply > because I have been on the replacement therapy for a while now. Does this > make sense? From everything I seem to be reading, each individual has a > different "level" at which they feel well. If I felt crappy at 2.8, isn't is > possible that I would still feel crappy at 2.34? and why would my last two > periods of improvement have coincided with increased amounts of replacement > hormones?!?!? > > Everything I have read has suggested that this is a slow process but if that > is true then I don't understand why my TSH has moved so little. My endo made > it sound like they original amount of 50 was "no small amount" and now I am > up to 100. Does that make sense? Could the pace of my thyroid deterioration > be keeping up with the dosage increases? > > I guess I am holding out hope that I don't have a degenerative nerve or > joint disorder, but my rheumatologist is stumped too. I just don't fit under > any other diagnosis other than hypothyroidism. Has anyone else had the joint > pain and muscle aches as their major symptom? Do I have to keep moving up at > such slow dosing increments? Could I push my doc to try 150 next time > instead of just going to 125 or is that too much? Should I push her to see > me every 6 weeks? > > My endo does believe I should be aiming for 1.0 for TSH to feel my best so > that is good but I was crushed to find out that she didn't think my joint > pain was related. > > Thanks for any input or experiences you guys have!!! > > Linda > I can relate to your aches and pains. One year ago I could barely walk or lift myself out of a chair. Stairs were impossible. Please share with us if your endo has tested anything other than TSH. What tests and what were the results?
From: Daisy on 3 Oct 2005 04:48 Hi there, Unfortunately all improvements in thyroid diseaase are slow -it has taken me five years to feel anywhere near well -and I still am a bit up and down -however over that 5 years I have gone from being in a wheelchair as my legs were so stiff I couldn't walk any distance to doing a return to teach course and running a 14acre small-holding! I seem to have stabilised out on 100mcgs -which felt too low at first -but improvements carried on as my body healed. Patience is an essential attribute for thyroid sufferers -one that I have never had inplenty LOL Love Daisy-Claire
From: John Turner on 3 Oct 2005 08:17
I do. I've had the foot and heel pain and stiffness and It's gradually getting better with days of regression. Sometimes I get fired up and go out and worke in the yard for 2-3 hours and it seems like the next week that I've depleted my thyroid hormone stores. I've been on levoxyl for 5 mos. started at 50mcg up to 75 now. It just seems to an extremely slow process. Dont know if you do this but I went back to the levoxyl monograph to see about any drug or vitamin interaction which there was so that was another setback. Just a thought. BTW I have the pretibial myxedema(swelling of ankles) and thyroid dermopathy (rash on ankles). There is a relation of SRRIs(antidepressants) and thyroid hormone dosages. Linda Brown wrote: >I have been dealing with health issues for about a year now and in the >Spring I was diagnosed with Hashimoto's. My First TSH was 3.4 UIU/ML (that >was back in Jan and was labeled as normal and dismissed). The next two were >2.8 and 2.34. My Endo has upped my replacement dosage each appointment and I >am now up to 100 mg. She is only seeing me every 3 months. > >After the last appointment and dosage increase I had a "good period" but >then about a month later started feeling crappy again. Now 2 weeks after >starting at 100 mg I am again entering a "good period". > >My worst symptoms are hand and foot pain (carpal and tarsal tunnel >syndromes?) and when it is bad I can barely walk. At the end of this most >recent "bad" spell my hips were involved too. My body temp is above 97 most >days now which is progress for me, I have stopped lactating, anxiety is >better and hair loss is better too. I am also taking anti-depressants (they >have helped a lot), hydroxycloroquinine (in case it is lupus!!) and major >pain meds (anti-inflammatory that don't seem to do much). > >Not to confuse the issue but I also have a 5mm pituitary microadinoma...my >endo does not think it is currently causing any problems. > >So my question is this...my endo stated at my last appointment that it is >time to "give up" on the idea that my joint/foot/hand pain is related to the >thyroid issue. She suggested that even though my TSH levels had barely >changed between the last two tests that I should be feeling better simply >because I have been on the replacement therapy for a while now. Does this >make sense? From everything I seem to be reading, each individual has a >different "level" at which they feel well. If I felt crappy at 2.8, isn't is >possible that I would still feel crappy at 2.34? and why would my last two >periods of improvement have coincided with increased amounts of replacement >hormones?!?!? > >Everything I have read has suggested that this is a slow process but if that >is true then I don't understand why my TSH has moved so little. My endo made >it sound like they original amount of 50 was "no small amount" and now I am >up to 100. Does that make sense? Could the pace of my thyroid deterioration >be keeping up with the dosage increases? > >I guess I am holding out hope that I don't have a degenerative nerve or >joint disorder, but my rheumatologist is stumped too. I just don't fit under >any other diagnosis other than hypothyroidism. Has anyone else had the joint >pain and muscle aches as their major symptom? Do I have to keep moving up at >such slow dosing increments? Could I push my doc to try 150 next time >instead of just going to 125 or is that too much? Should I push her to see >me every 6 weeks? > >My endo does believe I should be aiming for 1.0 for TSH to feel my best so >that is good but I was crushed to find out that she didn't think my joint >pain was related. > >Thanks for any input or experiences you guys have!!! > >Linda > > > > > |