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Post-Lobectomy Thyroid Swings and Symptoms. How long to regulate?
I had a lobectomy for a large multinodular goiter and parathryroid adenoma removed in August (almost 4 mos ago), and I feel like my body and hormones are still all over the place. For four months I've been on a total rollercoaster and I have no idea when it will end. Am wondering if anyone can provide advice or words of wisdom?
Prior to surgery my TSH was normal (1.6). Immediately after surgery I went hyper (TSH 0.014) and had terrible tachycardia (heart rate as high as 160s - ended up in ER with suspected SVT), panic attacks, and anxiety. Over the past 3-4 months, my TSH has gradually increased to 1.6, 2.5, and now 4.5, but I still am getting what feels like swings from hypo to hyper. Is this normal/typical after thyroid surgery? I will go a couple of days feeling hot, anxious, and having tachycardia, high BP, and even some SVT bursts and arrhythmias (PACs and PVCs) requiring beta blocker. Then 2-3 days later I feel slow, chilly, heart rate lower than normal, blood pressure lower. Generally feeling ok. I think I prefer being hypo to hyper.
I can relate to the phrase "stop the thyroid madness." I have been living with this for decades (nodules and parathyroid) and thought surgery would help but it's not!
How long does it take for the thyroid and hormones to settle?
Is it possible to still have swings from hyper to hypo in the same week?
What causes this? Thyroiditis? Hashimoto's? I never had Hashimoto's symptoms and all my labs are normal except for the TSH which is all over the place and climbing.
At TSH of 4.5 I have been told to hold off on starting synthroid because of the swings I feel symptoms wise and also my history of cardiac issues and arrthymias. But I wonder if starting a low dose of synthroid (12.5 - 25) would help my thyroid stabilize and land. Or will it make the heart stuff worse?
Any advice or words of wisdom would be so appreciated. I am 41 with three kids under the age of 7, and a full time job. These symptoms are ruining my life and I am getting conflicting advice from different doctors.
Prior to surgery my TSH was normal (1.6). Immediately after surgery I went hyper (TSH 0.014) and had terrible tachycardia (heart rate as high as 160s - ended up in ER with suspected SVT), panic attacks, and anxiety. Over the past 3-4 months, my TSH has gradually increased to 1.6, 2.5, and now 4.5, but I still am getting what feels like swings from hypo to hyper. Is this normal/typical after thyroid surgery? I will go a couple of days feeling hot, anxious, and having tachycardia, high BP, and even some SVT bursts and arrhythmias (PACs and PVCs) requiring beta blocker. Then 2-3 days later I feel slow, chilly, heart rate lower than normal, blood pressure lower. Generally feeling ok. I think I prefer being hypo to hyper.
I can relate to the phrase "stop the thyroid madness." I have been living with this for decades (nodules and parathyroid) and thought surgery would help but it's not!
How long does it take for the thyroid and hormones to settle?
Is it possible to still have swings from hyper to hypo in the same week?
What causes this? Thyroiditis? Hashimoto's? I never had Hashimoto's symptoms and all my labs are normal except for the TSH which is all over the place and climbing.
At TSH of 4.5 I have been told to hold off on starting synthroid because of the swings I feel symptoms wise and also my history of cardiac issues and arrthymias. But I wonder if starting a low dose of synthroid (12.5 - 25) would help my thyroid stabilize and land. Or will it make the heart stuff worse?
Any advice or words of wisdom would be so appreciated. I am 41 with three kids under the age of 7, and a full time job. These symptoms are ruining my life and I am getting conflicting advice from different doctors.
I have no direct knowledge about what happens with the thyroid system after a lobectomy. You have only half of your thyroid gland left, so my expectation would be that it would be unable to provide enough thyroid hormone to meet the needs of your body. I think the lack of thyroid hormone is shown by your test results. Even though TSH is a poor indicator of thyroid status, your TSH is increasing. Also, your Free T4 is much too low in the range, It is far better when at the middle of the range, at minimum. You were not tested for the other biologically active thyroid hormone, Free T3. Both Free T4 and Free T3 should be tested each time you are re-tested. If your Free T3 level is in the same relative position within its range as your Total T3 result, that would be strong evidence of hypothyroidism.
It is not as well known but the symptoms you identified as hyper can also sometimes be due to hypothyroidism. So all in all, it is likely you are experiencing different hypo symptoms for which your would need to start on thyroid medication to adequately raise your Free T4 to mid-range, and your Free T3 in the upper half of its range, as necessary to relieve symptoms. Note that when taking thyroid med adequate to relieve symptoms, the TSH frequently becomes suppressed below range. That does not mean hyperthyroidism, unless you are having hyper symptoms due to excessive levels of Free T4 and Free T3.
I may be really grasping for possible causes, but the only alternative I can imagine to hypothyroidism causing all symptoms, would be if your adrenals are over-reacting to the big change in your thyroid hormone levels. So before starting on thyroid med, it might be a worthwhile idea to test for cortisol levels. The best test for cortisol is the diurnal saliva cortisol test taken at 4 times during the day. It is difficult to get this done by doctors: they only want to test morning serum cortisol, but it is hard to interpret results since cortisol levels change so much over the day. If you wanted, you could use ZRT on line and for about $140 they send a kit for you to collect saliva 4 times during the day and then send for analysis. You could do these during the days when you experience the elevated pulse, trouble sleeping, and anxiety.
Also, before starting on thyroid med I would also get tested for Vitamin D, B12 and especially ferritin. Low levels can cause symptoms that mimic hypothyroidism. Low D or low ferritin can also adversely affect metabolism of thyroid hormone. D should be about 55-60. B12 in the upper end of its range, and ferritin should be 70 minimum. It is best to not start on thyroid med if ferritin is really low.
The best test for cortisol is the diurnal saliva cortisol test taken at 4 times during the day. It is difficult to get this done by doctors, they only want to test morning serum cortisol, but it is hard to interpret results since cortisol levels change so much over the day. If you wanted to consider this you could use ZRT on line and for about $140 they send a kit for you to collect saliva 4 times during the day and then send for analysis. You could do these during the time when you were experiencing the elevated pulse, trouble sleeping, and anxiety.
If you can get these tests done I think you will be better able to identify what is going on and what is required.
It is not as well known but the symptoms you identified as hyper can also sometimes be due to hypothyroidism. So all in all, it is likely you are experiencing different hypo symptoms for which your would need to start on thyroid medication to adequately raise your Free T4 to mid-range, and your Free T3 in the upper half of its range, as necessary to relieve symptoms. Note that when taking thyroid med adequate to relieve symptoms, the TSH frequently becomes suppressed below range. That does not mean hyperthyroidism, unless you are having hyper symptoms due to excessive levels of Free T4 and Free T3.
I may be really grasping for possible causes, but the only alternative I can imagine to hypothyroidism causing all symptoms, would be if your adrenals are over-reacting to the big change in your thyroid hormone levels. So before starting on thyroid med, it might be a worthwhile idea to test for cortisol levels. The best test for cortisol is the diurnal saliva cortisol test taken at 4 times during the day. It is difficult to get this done by doctors: they only want to test morning serum cortisol, but it is hard to interpret results since cortisol levels change so much over the day. If you wanted, you could use ZRT on line and for about $140 they send a kit for you to collect saliva 4 times during the day and then send for analysis. You could do these during the days when you experience the elevated pulse, trouble sleeping, and anxiety.
Also, before starting on thyroid med I would also get tested for Vitamin D, B12 and especially ferritin. Low levels can cause symptoms that mimic hypothyroidism. Low D or low ferritin can also adversely affect metabolism of thyroid hormone. D should be about 55-60. B12 in the upper end of its range, and ferritin should be 70 minimum. It is best to not start on thyroid med if ferritin is really low.
The best test for cortisol is the diurnal saliva cortisol test taken at 4 times during the day. It is difficult to get this done by doctors, they only want to test morning serum cortisol, but it is hard to interpret results since cortisol levels change so much over the day. If you wanted to consider this you could use ZRT on line and for about $140 they send a kit for you to collect saliva 4 times during the day and then send for analysis. You could do these during the time when you were experiencing the elevated pulse, trouble sleeping, and anxiety.
If you can get these tests done I think you will be better able to identify what is going on and what is required.
Thanks, gimel. To answer, the most recent labs are:
T4 - 1.03 (reference range is 0.82-1.77)
TSH - 4.54 (range 0.45-4.50)
T3 - 96 (range 71-180)
The CMP was otherwise normal with slightly elevated bilirubin - 1.3 (range 0.0 - 1.2)
Again it feels like I alternate feelings of hypo and hyper. The day I did the bloodwork I was feeling more hypo. Cold. Tired. Slower. But then two days later I felt hyper again. No additional labs though. But my pulse was elevated, trouble sleeping, anxiety.
No idea when I should start synthroid. Both my endocrine and cardiologist say to hold off. My GP thinks my body still may be adjusting to the surgery. But it's been almost 4 months!
T4 - 1.03 (reference range is 0.82-1.77)
TSH - 4.54 (range 0.45-4.50)
T3 - 96 (range 71-180)
The CMP was otherwise normal with slightly elevated bilirubin - 1.3 (range 0.0 - 1.2)
Again it feels like I alternate feelings of hypo and hyper. The day I did the bloodwork I was feeling more hypo. Cold. Tired. Slower. But then two days later I felt hyper again. No additional labs though. But my pulse was elevated, trouble sleeping, anxiety.
No idea when I should start synthroid. Both my endocrine and cardiologist say to hold off. My GP thinks my body still may be adjusting to the surgery. But it's been almost 4 months!
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