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PLEASE HELP ME:(scared to death
I had RAI almost 3 yrs ago for Graves and multiple nodules. No cancer. I was placed on Synthroid 6 weeks later. My Endo said I was now Hypo and would just have to have blood work and take that med for the rest of my life.
At first I felt wonderful for about 6 months. Moved a week after RAI to my sons home. He is military, due in Sat from Afghanistan. Anyway, slowly I have slid down hill. At first, I could tell the med would need to be increased because I would get real tired and cold, vertigo aand such. Other times I would feel fine and my doc would up my dose. I would not feel better tho shortly after like at first tho.
Last winter I had a lump in my throat and then it became painful. VERY. I just thought it was no biggy honestly. Frankly, I am trying to still learn about my disease. But I can say that my doc refuses to listen to me..EVER. Like just before the sore throat. I felt like I had Graves again and I noticed my eyes looked really odd. Thought I was imagining things. plus weight loss. My GP told me I could NOT have Graves side effects...even tho I was loosing weight like crazy. So I started to not trust her AT ALL mostly. I admittedly stopped my meds to feel better and get weight back on. Then went hypo 3-4 weeks later. I have wanted to listen to her but it is HARD. Especially with her always disputing me on how I FEEL. Hello.
Then I had hi BP. Took her med and landed up with 13 stitches in my face at 2:30 am. ER doc told me to not take it. He did not feel I needed it THEN. Most certainly not 40mg with a top # of 35 and bottom # of 84. So I didnt. Then fall late summer that yr. 6 mos later, she quetioned about it. I told her what ER said. She got blow up MAD and said "he would NOT have told you that! And stormed out. Yes...that really happened. I should have walked out. But my thyroid was acting up again. By this time she upped me to 125micros. I did start the Hi BP meds and chloesteral too sometime around then again also. We were at the hopital everyday because I would drop so low. Those docs did not understand her thinking. So I only took 1/2 pills for a while finally.
2 mos. ago or so, I was also now told that my blood work was coming back low sodium. SO, they told me to eat more salt. I am afraid of iodine because my thyroid was ablated. But I have been doing it thinking I will get better. Recent blood work on 1st said it came up sum. Still under 130 tho. It was 125? I am mot certain.
FINALLY, I felt GOOD. In March this yr, she did my blood work and upped me to 150micros. And it has been down hill since. 2 months ago I had a breathing attack out of the blue,alone. Hubby out of town for wkend. I had 911 dialed in, ready. For somme reason got some salt???????? This happened prior to me learning I was low in sodium. Found the inhaler that is only here for emergecies now. Havnt needed it reg in yrs now. I also have Epilepsy. Dont drive.
I finally got her to get me off Lisinopril 1st of this mo. My breathing seemed to get much better. Then got the call to up my Synthroid to 175. I have been freezing so bad when I take it. When I dont I feel so good. I am nauseated an hr after. Severe Vertigo now too.:( This am I awoke with blood red BULGING eyes and felt so horrible. Yest afternoon when I took that other half pill, my energy just plummeted. I was standing talking last nite and felt like I was falling asllep!!!! My memory is extremely bad. I will sit and just stare at pages. I am down to probably 105 as of 2day. I weight 108 at neuros one day. VERY next day I was 107 with more clothes on!!! Prior to her upping to 175,
I was already laid out on the couch ALOT. I have no appetite. Other things like heart pounding my eyes, vertigo and so on are from my hyper.
I called 2day to give you all my #'s B-4 upping to 175micros
They are (T-4:6.8 and TSH:2.63
I hope you all can make sense of my writing, it was hard writing this correct. Thank you for reading and help
At first I felt wonderful for about 6 months. Moved a week after RAI to my sons home. He is military, due in Sat from Afghanistan. Anyway, slowly I have slid down hill. At first, I could tell the med would need to be increased because I would get real tired and cold, vertigo aand such. Other times I would feel fine and my doc would up my dose. I would not feel better tho shortly after like at first tho.
Last winter I had a lump in my throat and then it became painful. VERY. I just thought it was no biggy honestly. Frankly, I am trying to still learn about my disease. But I can say that my doc refuses to listen to me..EVER. Like just before the sore throat. I felt like I had Graves again and I noticed my eyes looked really odd. Thought I was imagining things. plus weight loss. My GP told me I could NOT have Graves side effects...even tho I was loosing weight like crazy. So I started to not trust her AT ALL mostly. I admittedly stopped my meds to feel better and get weight back on. Then went hypo 3-4 weeks later. I have wanted to listen to her but it is HARD. Especially with her always disputing me on how I FEEL. Hello.
Then I had hi BP. Took her med and landed up with 13 stitches in my face at 2:30 am. ER doc told me to not take it. He did not feel I needed it THEN. Most certainly not 40mg with a top # of 35 and bottom # of 84. So I didnt. Then fall late summer that yr. 6 mos later, she quetioned about it. I told her what ER said. She got blow up MAD and said "he would NOT have told you that! And stormed out. Yes...that really happened. I should have walked out. But my thyroid was acting up again. By this time she upped me to 125micros. I did start the Hi BP meds and chloesteral too sometime around then again also. We were at the hopital everyday because I would drop so low. Those docs did not understand her thinking. So I only took 1/2 pills for a while finally.
2 mos. ago or so, I was also now told that my blood work was coming back low sodium. SO, they told me to eat more salt. I am afraid of iodine because my thyroid was ablated. But I have been doing it thinking I will get better. Recent blood work on 1st said it came up sum. Still under 130 tho. It was 125? I am mot certain.
FINALLY, I felt GOOD. In March this yr, she did my blood work and upped me to 150micros. And it has been down hill since. 2 months ago I had a breathing attack out of the blue,alone. Hubby out of town for wkend. I had 911 dialed in, ready. For somme reason got some salt???????? This happened prior to me learning I was low in sodium. Found the inhaler that is only here for emergecies now. Havnt needed it reg in yrs now. I also have Epilepsy. Dont drive.
I finally got her to get me off Lisinopril 1st of this mo. My breathing seemed to get much better. Then got the call to up my Synthroid to 175. I have been freezing so bad when I take it. When I dont I feel so good. I am nauseated an hr after. Severe Vertigo now too.:( This am I awoke with blood red BULGING eyes and felt so horrible. Yest afternoon when I took that other half pill, my energy just plummeted. I was standing talking last nite and felt like I was falling asllep!!!! My memory is extremely bad. I will sit and just stare at pages. I am down to probably 105 as of 2day. I weight 108 at neuros one day. VERY next day I was 107 with more clothes on!!! Prior to her upping to 175,
I was already laid out on the couch ALOT. I have no appetite. Other things like heart pounding my eyes, vertigo and so on are from my hyper.
I called 2day to give you all my #'s B-4 upping to 175micros
They are (T-4:6.8 and TSH:2.63
I hope you all can make sense of my writing, it was hard writing this correct. Thank you for reading and help
Goodness! You have had a lot happening! Never fear! The Medhelp thyroid friends are here!
Ok Need to ask you some questions.
You say you have low sodium, did they test your potassium as well? You take salt, you say you don't want to take iodine, BUT, I wonder is it possible you ARE in fact taking Iodised Salt? You should check the label. If you are, you are adding to the hyper symptoms inadvertently.
If you are low on sodium did they ever test your adrenal gland function by doing cortisol test? Low adrenal function can make you feel pretty lousy and hypo. If you are off in that, then you are going to have thyroid issues.
Are you taking your Synthroid an hour or so after breakfast? If not it can be a cause of hypo symptoms too, due to the inability of it to absorb with the food.
Have you tried taking Levothyroxine? Many patients feel MUCHbetter when they switch as Synthroid has a few extra ingredients which some people can not tolerate. Including a coating which may not disintegrate in the stomach as fast.
Have you got the lab tests results showing reference ranges? Have you had Free T3 tested? Anti-bodies?
Sometimes RAI needs to be done again.
Ask the new doctor's receptionist to put you on the cancellation list. Means if they get a cancellation, they call you. Mind you some places only know on short notice, and you have to drop everything to get there, but it is worth a shot to get in earlier.
It may well be a good idea to have to go the 5 hours travel to see someone else. Not ideal but we thyroid patients have no other choices sometimes!
Cheers
Ok Need to ask you some questions.
You say you have low sodium, did they test your potassium as well? You take salt, you say you don't want to take iodine, BUT, I wonder is it possible you ARE in fact taking Iodised Salt? You should check the label. If you are, you are adding to the hyper symptoms inadvertently.
If you are low on sodium did they ever test your adrenal gland function by doing cortisol test? Low adrenal function can make you feel pretty lousy and hypo. If you are off in that, then you are going to have thyroid issues.
Are you taking your Synthroid an hour or so after breakfast? If not it can be a cause of hypo symptoms too, due to the inability of it to absorb with the food.
Have you tried taking Levothyroxine? Many patients feel MUCHbetter when they switch as Synthroid has a few extra ingredients which some people can not tolerate. Including a coating which may not disintegrate in the stomach as fast.
Have you got the lab tests results showing reference ranges? Have you had Free T3 tested? Anti-bodies?
Sometimes RAI needs to be done again.
Ask the new doctor's receptionist to put you on the cancellation list. Means if they get a cancellation, they call you. Mind you some places only know on short notice, and you have to drop everything to get there, but it is worth a shot to get in earlier.
It may well be a good idea to have to go the 5 hours travel to see someone else. Not ideal but we thyroid patients have no other choices sometimes!
Cheers
want to add....because of insurance issue....makes it hard for me to switch docs. But..today Iwas on the phone from 9:30 am till 4pm looking for a doc who took my insurance. I cant be seen till Jan 6th. And the worst news possible!!! No endos in town who take this crappy insurance. I am more cared now. Just praying to God this works better. Otherwise I may have to travel 5 hrs away!!!!
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