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How long does it take to regulate hormone past TT surgery?
Hi Everyone,
I am hoping I can get some advice to narrow down and find the target for my thyroid meds that will relieve my symptoms in a better time frame and see if anyone else has had these symptoms too that can give me some advice.
I had a total thyroidectomy on May 8th. At that time my parathyroids became underactive and my calcium dropped to 8.7 (range 8.5 - 10.4) from 9.4. I was also put on 100 mcg of synthroid and .25 mcg of calcitrol, plus 2 1000 Tums right after surgery. That calcium drop a week after surgery prompted an increase of calcitorl to 2/day and the addition of a time released calcium supplement called citraca (due to tums making me nauseas).
The reason for the TT was due to the development of nodules on both sides of the thyroid. I had been hypothyroid for about 10 years before and was on Levothyroxine 50 mcg for that time. I was also diagnosed as diabetic at the same time. I was told I had hashimoto's then, but no tests for that were done outside of the TSH being caught by an allergist. These nodules had gone from three to five in a month and my TSH was going down to 0.23 from the 0.83 (range 0.4 - 5) I first saw my endo for in March. In March my Free T4 was 1.25 (range 0.9-1.7) and my TT3 was 135 (range 80-200). I had tested negative for antibodies of both types and for thyroid cancer type (I can't remember what he called it) and a biopsy of the largest nodule was done. The biopsy was benign, but the rate at the growth of new nodules and the hyperactive levels were the reason for the thyroid removal. I had also seen a neurologist as a referral from the ER for an MRI showing some small white matter changes in my brain. I passed her tests and the white matter changes are consistent with people who have migraines and diabetes destroying blood vessels. At that time she felt it could be thyroid related and would see me three months past my surgery to see if things had improved as she anticipated. I was also seen by a cardiologist to make sure nothing was heart related. EKG, Echocardogram and a stress test showed normal with PVCs occasional. Prior to all this I also had tests for Lupus and RA and inflammation as I had achy knees. These tests were also negative.
The symptoms that brought me to the ER that found the largest nodule where severe dizziness that would not go away after an hour, even laying down. I had also had some occasional PVCs that I felt. In addition to the dizziness was a tingly sensation on my left face, left hand and toes and a hard time concentrating. This was the cause for the CAT scan and the MRI to rule out stroke and clogged blood vessels. These symptoms continued to come and go for me from Feb 4th until surgery in May 8th. I had been seeing a vestibular therapist for the dizziness as this was thought not to be related to the thyroid.
Since May 8th, I have had to deal with the calcium which can cause all that numbing and tingling. My parathyroids have shown some life in that they were 7 a week post surgery (range I am not totally sure, but the bottom is 15) and are now at 20 as of last week. My calcium dropped to 8.9 though with the parathyroid coming up. So my calcitrol dose was increased to 3/day. I had a very low vitamin D level of 7 (apparently I want this at around 50 per my endo). I was also told to take 5,000 IU of D3 daily. My diabetes has gone down and my last A1C is 5.2 for no good reason. A month post surgery my thyroid med was increased to 125 mcg as my TSH was now 6. I was feeling terrible. T3 was also added as this was 78 now. My FT4 was at 1.24 though. So I was given the generic cytomel 5 mcg/day; with the hope that would be transitory. Within the second day of the cytomel I felt almost normal. The numbness had decreased and the dizziness was almost gone. I could also th ink again.. not quite perfect, but way better. My latest TSH showed 1.24 (the sweet spot the endo calls it), my FT4 was lower though at 1.04, but I felt good so he left it.
About three weeks ago I go the summer cold going on and this gave me bronchitis as I am also mildly asthmatic. After about 4 days of the cold I started to feel the numbness return. After a week I saw my primary care doctor and he gave me some antibiotics and changed my inhaler and such. I felt the brain concentration fall and called my endo. He said nothing I can do while you are sick. So I waited it out feeling like I was going to die. After two weeks I was finally recovered and had my endo appointment (every t wo weeks due to the calcium levels). I told him how I felt, but he dismissed it as my numbers had been fine the last test and it was too soon to test again. As the week progressed those symptoms became worse and the dizziness came back to a constant extreme. I had also refilled my calcitrol script and the pharmacy had swapped manufacturer. So the endo said that could be it and to take that 3/day after coming in to get my calcium checked and he would throw in a TSH for good measure. So the calcium came back as 9.3; up form the previous 8.7, the active form of D was down from 43 to 25, but still within range and my TSH was now 0.32.
I was floored seeing the TSH drop and my symptoms return to pre-surgery in such a short time. His recommendation is to move to 112 mcg of Tirosint and to drop the cytomel. His explanation was that calcium levels do things to thyroid med absorption, but you never know if it will be up or down. He also says the tirosint absorbs better). I am nervous going off the cytomel as that really seemed to make a huge difference when I took it. I did take a day off meds to try and lower my levels a bit and I did feel better by wee hours of the next day (little bit of insomnia now).
Does any of this sound familiar to anyone? Has it gotten better for you and what fixed it? How is Tirosint as a med? Does anyone know about calcium and thyroid levels? I thought his explanation odd as I had been on the same calcium does since June 22. Any understanding of all this would be great; I am frustrated coming at the three month mark here with the same symptoms I went into surgery for.
I am hoping I can get some advice to narrow down and find the target for my thyroid meds that will relieve my symptoms in a better time frame and see if anyone else has had these symptoms too that can give me some advice.
I had a total thyroidectomy on May 8th. At that time my parathyroids became underactive and my calcium dropped to 8.7 (range 8.5 - 10.4) from 9.4. I was also put on 100 mcg of synthroid and .25 mcg of calcitrol, plus 2 1000 Tums right after surgery. That calcium drop a week after surgery prompted an increase of calcitorl to 2/day and the addition of a time released calcium supplement called citraca (due to tums making me nauseas).
The reason for the TT was due to the development of nodules on both sides of the thyroid. I had been hypothyroid for about 10 years before and was on Levothyroxine 50 mcg for that time. I was also diagnosed as diabetic at the same time. I was told I had hashimoto's then, but no tests for that were done outside of the TSH being caught by an allergist. These nodules had gone from three to five in a month and my TSH was going down to 0.23 from the 0.83 (range 0.4 - 5) I first saw my endo for in March. In March my Free T4 was 1.25 (range 0.9-1.7) and my TT3 was 135 (range 80-200). I had tested negative for antibodies of both types and for thyroid cancer type (I can't remember what he called it) and a biopsy of the largest nodule was done. The biopsy was benign, but the rate at the growth of new nodules and the hyperactive levels were the reason for the thyroid removal. I had also seen a neurologist as a referral from the ER for an MRI showing some small white matter changes in my brain. I passed her tests and the white matter changes are consistent with people who have migraines and diabetes destroying blood vessels. At that time she felt it could be thyroid related and would see me three months past my surgery to see if things had improved as she anticipated. I was also seen by a cardiologist to make sure nothing was heart related. EKG, Echocardogram and a stress test showed normal with PVCs occasional. Prior to all this I also had tests for Lupus and RA and inflammation as I had achy knees. These tests were also negative.
The symptoms that brought me to the ER that found the largest nodule where severe dizziness that would not go away after an hour, even laying down. I had also had some occasional PVCs that I felt. In addition to the dizziness was a tingly sensation on my left face, left hand and toes and a hard time concentrating. This was the cause for the CAT scan and the MRI to rule out stroke and clogged blood vessels. These symptoms continued to come and go for me from Feb 4th until surgery in May 8th. I had been seeing a vestibular therapist for the dizziness as this was thought not to be related to the thyroid.
Since May 8th, I have had to deal with the calcium which can cause all that numbing and tingling. My parathyroids have shown some life in that they were 7 a week post surgery (range I am not totally sure, but the bottom is 15) and are now at 20 as of last week. My calcium dropped to 8.9 though with the parathyroid coming up. So my calcitrol dose was increased to 3/day. I had a very low vitamin D level of 7 (apparently I want this at around 50 per my endo). I was also told to take 5,000 IU of D3 daily. My diabetes has gone down and my last A1C is 5.2 for no good reason. A month post surgery my thyroid med was increased to 125 mcg as my TSH was now 6. I was feeling terrible. T3 was also added as this was 78 now. My FT4 was at 1.24 though. So I was given the generic cytomel 5 mcg/day; with the hope that would be transitory. Within the second day of the cytomel I felt almost normal. The numbness had decreased and the dizziness was almost gone. I could also th ink again.. not quite perfect, but way better. My latest TSH showed 1.24 (the sweet spot the endo calls it), my FT4 was lower though at 1.04, but I felt good so he left it.
About three weeks ago I go the summer cold going on and this gave me bronchitis as I am also mildly asthmatic. After about 4 days of the cold I started to feel the numbness return. After a week I saw my primary care doctor and he gave me some antibiotics and changed my inhaler and such. I felt the brain concentration fall and called my endo. He said nothing I can do while you are sick. So I waited it out feeling like I was going to die. After two weeks I was finally recovered and had my endo appointment (every t wo weeks due to the calcium levels). I told him how I felt, but he dismissed it as my numbers had been fine the last test and it was too soon to test again. As the week progressed those symptoms became worse and the dizziness came back to a constant extreme. I had also refilled my calcitrol script and the pharmacy had swapped manufacturer. So the endo said that could be it and to take that 3/day after coming in to get my calcium checked and he would throw in a TSH for good measure. So the calcium came back as 9.3; up form the previous 8.7, the active form of D was down from 43 to 25, but still within range and my TSH was now 0.32.
I was floored seeing the TSH drop and my symptoms return to pre-surgery in such a short time. His recommendation is to move to 112 mcg of Tirosint and to drop the cytomel. His explanation was that calcium levels do things to thyroid med absorption, but you never know if it will be up or down. He also says the tirosint absorbs better). I am nervous going off the cytomel as that really seemed to make a huge difference when I took it. I did take a day off meds to try and lower my levels a bit and I did feel better by wee hours of the next day (little bit of insomnia now).
Does any of this sound familiar to anyone? Has it gotten better for you and what fixed it? How is Tirosint as a med? Does anyone know about calcium and thyroid levels? I thought his explanation odd as I had been on the same calcium does since June 22. Any understanding of all this would be great; I am frustrated coming at the three month mark here with the same symptoms I went into surgery for.
I've read levothyroxine molecules stick to calcium molecules and form a mixed substance which is not easily absorbed into the digestive tract. The warning labels on my Eutroxsig (synthetic T4) packaging...
"Avoid excessive skin exposure to sunlight and sunlamps while being treated with this medication.
Do not take dairy products, antacids, iron, or calcium supplements within two hours of each dose of this medication."
TSH does have a sweet spot because studies show the majority of healthy people have a TSH under 2.5 but usually it's hovering around the 1 mU/L range. Sure you can aim for the TSH sweet spot to start with but it can taste a bit sour if your free T4 and free T3 aren't in their sweet spot.
My sweet spot for free T4 is 16 pmol/L (10 - 20) and many years back a TSH of 1.6 mU/L correlated with a free T4 of 16 when I was not on medication. My current lab range came back with my TSH as 0.2 (0.20 - 4.00) with my free T4 at 16. Ahh sweet 16. :)
"Avoid excessive skin exposure to sunlight and sunlamps while being treated with this medication.
Do not take dairy products, antacids, iron, or calcium supplements within two hours of each dose of this medication."
TSH does have a sweet spot because studies show the majority of healthy people have a TSH under 2.5 but usually it's hovering around the 1 mU/L range. Sure you can aim for the TSH sweet spot to start with but it can taste a bit sour if your free T4 and free T3 aren't in their sweet spot.
My sweet spot for free T4 is 16 pmol/L (10 - 20) and many years back a TSH of 1.6 mU/L correlated with a free T4 of 16 when I was not on medication. My current lab range came back with my TSH as 0.2 (0.20 - 4.00) with my free T4 at 16. Ahh sweet 16. :)
6 Comments
That is interesting, but it would make my TSH higher I would think and not hyper. Could it be the time he took the blood test? I usually test with him in the afternoon around 3 pm. This time was a come in the morning at 9 am test. I usually take my meds about 7 am each day. I adhere to a very strict 4 hours before adding any supplements or other meds as were the instructions from my Endo.
TSH is higher in the morning than the afternoon. Labs might also be affected taking thyroxine prior to having a blood test.
I forgot to add cytomel can suppress TSH.
*
by suppress do you mean lower the number?
Yes, suppressed means the TSH is lower.
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