Aa
Lost and want hope
Hi All,
I had covid induced subacute thyroiditis this year, and did a number of things to get over it including the AIP diet which I realize now was low iodine for like 60 days. I went overtly hyper, had the best week of my life, went slightly hypo and came back to euthyroid. My doctor said the recovery was faster than most he has seen.
Well, I still didnt feel as good as I thought I could, and read bad internet advice. Before being fully healed and just a few months in to S.T., i started eating eggs, fish. Then I ate about a sheet of seaweed a day. I was feeling better and better so I took one drop of 650microgram nascent iodine, then another a week later.
All hell broke loose after. About 3 days after the second drop, i had vivid dreams, then nighmares then night terrors. Insomnia occurred next, followed by palpitations, diarrhea, weight loss, mass anxiety, high blood pressure. Sleeping 1 to 2 hours a night. I went to the ER to no avail. My thyroid has been tested and my tsh went from 3.5 to 2.6, FT4 from 1.5 to 1.7 (borderline high) BUT Total T3 from 90 to 68!? 68 is low for my age and sex. After 3 weeks of hell worse than the S.T., I felt euthyroid for like 2 days and started sleeping. Now I feel hypo and my BP dropped from its high 179/120 to 90/65. Ive had a heart rate at 59 BPM.
Endocrine does not think its my thyroid but states T3 is low. They dont think that I took enough iodine to mess things up. I'm on propanolol for the palpitations but my blood pressure and heart rate feel so slow. I'm constantly tired, dry skin and depressed. I man cry everyday.
What in the world is going on here? I had an ultrasound done and they said it looked like normal thyroiditis. Negative to the standard antibody tests.
I'm concerned eating iodine laden foods if that was the cause. If it wasnt, I'm concerned why I went from super fast S.T. healing, to hyper and hypo symptoms again. My S.T. pain was low but it did creep for weeks across the gland.
In the past 5 months, negative for hashi, no nodules, neg for graves or cancer. In the past month BP high 179/117 to low 90/60.
TSH and FT4 have been in range. T3 went 82-90-72-72-68. TSH and FT4 dipped a little but last FT4 is 1.4.
I've been off iodine foods because I though I had iodine induced hyperthyroidism but now Im low and want to add them in but dont want to go hyper or cause more damage. What can I do? What can I eat? Who has hope for me?
I had covid induced subacute thyroiditis this year, and did a number of things to get over it including the AIP diet which I realize now was low iodine for like 60 days. I went overtly hyper, had the best week of my life, went slightly hypo and came back to euthyroid. My doctor said the recovery was faster than most he has seen.
Well, I still didnt feel as good as I thought I could, and read bad internet advice. Before being fully healed and just a few months in to S.T., i started eating eggs, fish. Then I ate about a sheet of seaweed a day. I was feeling better and better so I took one drop of 650microgram nascent iodine, then another a week later.
All hell broke loose after. About 3 days after the second drop, i had vivid dreams, then nighmares then night terrors. Insomnia occurred next, followed by palpitations, diarrhea, weight loss, mass anxiety, high blood pressure. Sleeping 1 to 2 hours a night. I went to the ER to no avail. My thyroid has been tested and my tsh went from 3.5 to 2.6, FT4 from 1.5 to 1.7 (borderline high) BUT Total T3 from 90 to 68!? 68 is low for my age and sex. After 3 weeks of hell worse than the S.T., I felt euthyroid for like 2 days and started sleeping. Now I feel hypo and my BP dropped from its high 179/120 to 90/65. Ive had a heart rate at 59 BPM.
Endocrine does not think its my thyroid but states T3 is low. They dont think that I took enough iodine to mess things up. I'm on propanolol for the palpitations but my blood pressure and heart rate feel so slow. I'm constantly tired, dry skin and depressed. I man cry everyday.
What in the world is going on here? I had an ultrasound done and they said it looked like normal thyroiditis. Negative to the standard antibody tests.
I'm concerned eating iodine laden foods if that was the cause. If it wasnt, I'm concerned why I went from super fast S.T. healing, to hyper and hypo symptoms again. My S.T. pain was low but it did creep for weeks across the gland.
In the past 5 months, negative for hashi, no nodules, neg for graves or cancer. In the past month BP high 179/117 to low 90/60.
TSH and FT4 have been in range. T3 went 82-90-72-72-68. TSH and FT4 dipped a little but last FT4 is 1.4.
I've been off iodine foods because I though I had iodine induced hyperthyroidism but now Im low and want to add them in but dont want to go hyper or cause more damage. What can I do? What can I eat? Who has hope for me?
What does "S.T." stand for? Probably missing the obvious.
I agree with Gimel. With the mid to higher levels of Free T4 and hypo symptoms. It would seem to indicate poor conversion of FT4 to FT3. Selenium can help with conversion, but also make sure as stated that D3 levels and ferritin are also up in the range.
Stress can really cause a condition of conversion where the body converts the FT4 into REVERSE T3. This was explained to me in this way. It is the mirror image molecule of the active Free T3 (FT3) molecule. Thus it will be able to "fit" into FT3 receptors but is INACTIVE. Thus if the cells have a bunch of INACTIVE Reverse T3 (RT3) and in receptors there is "no room at the inn" for the active FT3 to reside in the cell. So you end up hypo.
You may want to ask for not only FREE T3 test as stated above by gimel because Total T3 is obsolete and not a good indicator as much of the T3 is bound by a protein and rendered inactive. ONLY the Free T3 is active and useful at the cellular level. So make sure you get FT4 and FT3 as well as ask for REVERSE T3. Many times the DR will balk at the idea of even running Free T3, and will really balk and I heard that Reverse T3 is an expensive test. So you may have to get pretty adamant to have these run.
Also you may want to have cortisol (the stress hormone) run to determine if that is affecting things.
One piece of advice with thyroid and most any hormone. Low and slow it the best way to go. Also change only one thing at a time if possible is another sage piece of advice.
Typically unless you are dealing with taking T3 medication with a short half life measured in hours, most anything thyroid related takes WEEKS to feel anything one way or the other. Rarely are things feeling good or bad switch in a single day or two. Low and slow means that any medication dosage changes should be small and over long time frame. For example T4 medication takes 6 WEEKS to become stabilized in the blood. So any changes should not be made in less than 6 or 8 weeks.
The reason to change one thing at a time is so that you can determine if it helped or mad things worse. If you change 2 or more things you have no idea which one of the changes had the effect (good or bad).
Therefore a lot of patience is required. It is frustrating. But not doing so is worse as you can get yourself on a roller coaster ride of hell swinging back and forth.
Third advice. Keep a spreadsheet or some sort of journal where you can record ALL your medications and dosages, and ALL your blood labs and the most important part how you FELT and what symptoms you had at those levels. Over time you will see how this all fits. And if you ever have to change doctors you will have a log of how you got to where you did and why you are at the dosages and how you feel at various different lab levels and dosages of medications. This is HUGE. do NOT believe the electronic medical records are at the dr's finger tips. Yes it is possible for the Dr to look up the dosages and lab results and dates. But they are at two different locations. And also they are NOT correlated to symptoms. So only YOU have the ability to put in all one single place just for you. And YOU have control of the document. I have found that I have to correct the electronic records all the time repeatedly. So I have little faith that they are accurate. Keep your own record!
Finally, You MUST be your own best advocate. you can read and educate yourself. And you are a human being just like the doctor. Just because they have two letters after their name does not make them a super hero. It means they have proven they have educated themselves to some level of degree. But most Dr's are generalists and they are so busy and overworked, they do not have time to read and study the latest information on any one specific disease or condition. You have all the time in the world to study your own specific condition. So you can easily and realistically be able to be just as educated if not even more so on your own disease than a General practitioner Doctor who has to be versed in 100's of different conditions.
I agree with Gimel. With the mid to higher levels of Free T4 and hypo symptoms. It would seem to indicate poor conversion of FT4 to FT3. Selenium can help with conversion, but also make sure as stated that D3 levels and ferritin are also up in the range.
Stress can really cause a condition of conversion where the body converts the FT4 into REVERSE T3. This was explained to me in this way. It is the mirror image molecule of the active Free T3 (FT3) molecule. Thus it will be able to "fit" into FT3 receptors but is INACTIVE. Thus if the cells have a bunch of INACTIVE Reverse T3 (RT3) and in receptors there is "no room at the inn" for the active FT3 to reside in the cell. So you end up hypo.
You may want to ask for not only FREE T3 test as stated above by gimel because Total T3 is obsolete and not a good indicator as much of the T3 is bound by a protein and rendered inactive. ONLY the Free T3 is active and useful at the cellular level. So make sure you get FT4 and FT3 as well as ask for REVERSE T3. Many times the DR will balk at the idea of even running Free T3, and will really balk and I heard that Reverse T3 is an expensive test. So you may have to get pretty adamant to have these run.
Also you may want to have cortisol (the stress hormone) run to determine if that is affecting things.
One piece of advice with thyroid and most any hormone. Low and slow it the best way to go. Also change only one thing at a time if possible is another sage piece of advice.
Typically unless you are dealing with taking T3 medication with a short half life measured in hours, most anything thyroid related takes WEEKS to feel anything one way or the other. Rarely are things feeling good or bad switch in a single day or two. Low and slow means that any medication dosage changes should be small and over long time frame. For example T4 medication takes 6 WEEKS to become stabilized in the blood. So any changes should not be made in less than 6 or 8 weeks.
The reason to change one thing at a time is so that you can determine if it helped or mad things worse. If you change 2 or more things you have no idea which one of the changes had the effect (good or bad).
Therefore a lot of patience is required. It is frustrating. But not doing so is worse as you can get yourself on a roller coaster ride of hell swinging back and forth.
Third advice. Keep a spreadsheet or some sort of journal where you can record ALL your medications and dosages, and ALL your blood labs and the most important part how you FELT and what symptoms you had at those levels. Over time you will see how this all fits. And if you ever have to change doctors you will have a log of how you got to where you did and why you are at the dosages and how you feel at various different lab levels and dosages of medications. This is HUGE. do NOT believe the electronic medical records are at the dr's finger tips. Yes it is possible for the Dr to look up the dosages and lab results and dates. But they are at two different locations. And also they are NOT correlated to symptoms. So only YOU have the ability to put in all one single place just for you. And YOU have control of the document. I have found that I have to correct the electronic records all the time repeatedly. So I have little faith that they are accurate. Keep your own record!
Finally, You MUST be your own best advocate. you can read and educate yourself. And you are a human being just like the doctor. Just because they have two letters after their name does not make them a super hero. It means they have proven they have educated themselves to some level of degree. But most Dr's are generalists and they are so busy and overworked, they do not have time to read and study the latest information on any one specific disease or condition. You have all the time in the world to study your own specific condition. So you can easily and realistically be able to be just as educated if not even more so on your own disease than a General practitioner Doctor who has to be versed in 100's of different conditions.
Thyroid status is determined mainly by the level of Free T3. Free T3 is the biologically active thyroid hormone that regulates metabolic activity throughout the body. Free T4 is a prohormone that is readily available for conversion to FT3, however, conversion is affected by numerous variables. The response to thyroid hormone is also affected by Vitamin D. Ferritin is also important for its effect on conversion of T4. Inadequate thyroid levels and effects manifest as hypothyroid symptoms some of which you mentioned having currently.
I expect that your FT4 level is around mid-range, but you did not post any FT3 test result, only Total T3, which is not nearly as revealing. That said, your T3 is likely indicative of insufficient FT3 also due to inadequate conversion of T4. This is consistent with your having hypo symptoms. The only time TSH is useful as a diagnostic for thyroid is when it is at extreme levels.
A good thyroid doctor will diagnose and treat clinically, by testing and adjusting Free T4 and FT3 levels as needed to relieve hypo symptoms, without being affected by resultant TSH levels. In addition I suggest that you test for Vitamin D, B12 and ferritin and supplement as needed to optimize. D should be at least 50 ng/ml. B12 in the upper part of its range, and ferritin should be at least 100. If you want to confirm what I have said, click on this link to a paper I co-authored.
https://thyroiduk.org/wp-content/uploads/2022/10/Patients-Guide-Final-V5.pdf
I expect that your FT4 level is around mid-range, but you did not post any FT3 test result, only Total T3, which is not nearly as revealing. That said, your T3 is likely indicative of insufficient FT3 also due to inadequate conversion of T4. This is consistent with your having hypo symptoms. The only time TSH is useful as a diagnostic for thyroid is when it is at extreme levels.
A good thyroid doctor will diagnose and treat clinically, by testing and adjusting Free T4 and FT3 levels as needed to relieve hypo symptoms, without being affected by resultant TSH levels. In addition I suggest that you test for Vitamin D, B12 and ferritin and supplement as needed to optimize. D should be at least 50 ng/ml. B12 in the upper part of its range, and ferritin should be at least 100. If you want to confirm what I have said, click on this link to a paper I co-authored.
https://thyroiduk.org/wp-content/uploads/2022/10/Patients-Guide-Final-V5.pdf
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