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THYROID DISEASE
Sept 30, 2010, I had my thyroid removed. I am now trying to learn the numbers that are thrown out with TSH. Could someone please help me to understand these numbers. I am hypothyroid. I am on Synthroid 88 mcg. I have bought several books, but, I am still unable to understand the different TSH numbers that thyroid patients in the know throw around.
This link will give you what you need as a start. If you have more questions after reading, then let us know.
http://www.drkaslow.com/html/thyroid.html
http://www.drkaslow.com/html/thyroid.html
I am most appreciative of the site that you sent me to. I have printed off the pages for my thyroid library that I am building. The books that I have purchased seem to be too controversy, and complicated at this time. I truly feel that the members on this site will help me to understand.
Since my surgery, I have been on three meds. My first was Levothyroxine 88 mcg, my second 100 mcg, and now Synthroid 88 mcg. I stayed on Levo 88 mcg for almost three months. During that time, I had severe leg cramps (never experienced that bad before). I called my Endo in December 2010 only to be told that she was on vacation. The Endo in charge told me to get blood tests done and call back in three days for my results. I was due to go back to my Endo in January 2011, so it was too soon for my blood tests. I got the blood work done. MY Endo was back before she was expected and called me. At that time she told me that I should not have had leg cramps, because my TSH was 1.25 and that was a good range. I explained that even though that was true, I was not feeling great. She put me on 100 mcg of Levo, and told me to keep my original appt. with her in January, even though I had, had blood work done while she was away for my leg cramps. That would mean that I would only be on the new titrate two and one half weeks. I got more blood work, which showed my TSH to be 0.09L which was out of range according to my lab. She put me back on 88 mcg of Synthroid. I requested Synthroid, because I had read that it was more stable. I have been on it approximately 6 days. Her response to me before I left the office was "I am putting you back down to 88 mcg, because your TSH was normal then, and if this doesn't work we will have to look for some other cause that's going on with you". My question: DO YOU THINK THAT SHE SHOULD HAVE CHANGED ME BACK TO 88 MCG AFTER ONLY BEING ON 100 MCG FOR TWO WEEKS? THANK YOU.
Since my surgery, I have been on three meds. My first was Levothyroxine 88 mcg, my second 100 mcg, and now Synthroid 88 mcg. I stayed on Levo 88 mcg for almost three months. During that time, I had severe leg cramps (never experienced that bad before). I called my Endo in December 2010 only to be told that she was on vacation. The Endo in charge told me to get blood tests done and call back in three days for my results. I was due to go back to my Endo in January 2011, so it was too soon for my blood tests. I got the blood work done. MY Endo was back before she was expected and called me. At that time she told me that I should not have had leg cramps, because my TSH was 1.25 and that was a good range. I explained that even though that was true, I was not feeling great. She put me on 100 mcg of Levo, and told me to keep my original appt. with her in January, even though I had, had blood work done while she was away for my leg cramps. That would mean that I would only be on the new titrate two and one half weeks. I got more blood work, which showed my TSH to be 0.09L which was out of range according to my lab. She put me back on 88 mcg of Synthroid. I requested Synthroid, because I had read that it was more stable. I have been on it approximately 6 days. Her response to me before I left the office was "I am putting you back down to 88 mcg, because your TSH was normal then, and if this doesn't work we will have to look for some other cause that's going on with you". My question: DO YOU THINK THAT SHE SHOULD HAVE CHANGED ME BACK TO 88 MCG AFTER ONLY BEING ON 100 MCG FOR TWO WEEKS? THANK YOU.
Once again, I am most appreciative of your help. Yesterday, I felt most horrible. I actually cried for the first time since having my thyroid removed.
After my surgery, I was put on Levo 88mcg. I stayed on for 2 months, before I called my Endo complaining of leg cramps. She said that I shouldn't feel bad since my labs showed 1.25, which was normal. She then said, but I will put you on 100mcg of Levo instead of the 88mcg Levo. She did this over the phone. I had a standing appt with her for Jan 13, 2011, which was only two weeks away. I asked her should I keep my appt. since I would have been on the 100mcg Levo for only 2 1/2 wks. She said yes. At the appt. her assistant, who I never saw before, came in to ask me a lot of questions. I told her that I could sometimes hear my heart thump while on my left side. I have MVP, which I forgot to mention. When my Endo came back into the office, she said that she was putting me back on 88mcg dose hearing that my heart thumped. And, my new labs showed a TSH of 0.09 L after being on the 100 mcg. She felt that the 100 mcg was too high. Since she was changing me back to 88 mcg, I asked her to put me on Synthroid. This was because I read that the dosage is more stable than Levo. However, my stomach does not agree with the inactive ingredients in Synthroid. I took it upon myself to go back on 88mcg Levo, which I had left over. In reference to my vit D, I have been taking vit D for years. I also take Calcium. My labs showed my Calcium to be 9.2 and my Albumin to be 3.1. I will certainly take your advice and tell her that I want a free T4/3 testing. I am not certain if I should look for a Medical doctor or an Endocrinologist. If she doesn't comply with my request, I am going to drop her. My life does not feel quality right now. Before my thyroid surgery, I felt in good health, because I try to do all of the right things. I exercise at a gym, and have been for years, at least four times a week. I walk my dog for exercise. I am also on a good vitamin regimen, and eat fairly well. I think that I should feel better if It is at all possible. Thank you
After my surgery, I was put on Levo 88mcg. I stayed on for 2 months, before I called my Endo complaining of leg cramps. She said that I shouldn't feel bad since my labs showed 1.25, which was normal. She then said, but I will put you on 100mcg of Levo instead of the 88mcg Levo. She did this over the phone. I had a standing appt with her for Jan 13, 2011, which was only two weeks away. I asked her should I keep my appt. since I would have been on the 100mcg Levo for only 2 1/2 wks. She said yes. At the appt. her assistant, who I never saw before, came in to ask me a lot of questions. I told her that I could sometimes hear my heart thump while on my left side. I have MVP, which I forgot to mention. When my Endo came back into the office, she said that she was putting me back on 88mcg dose hearing that my heart thumped. And, my new labs showed a TSH of 0.09 L after being on the 100 mcg. She felt that the 100 mcg was too high. Since she was changing me back to 88 mcg, I asked her to put me on Synthroid. This was because I read that the dosage is more stable than Levo. However, my stomach does not agree with the inactive ingredients in Synthroid. I took it upon myself to go back on 88mcg Levo, which I had left over. In reference to my vit D, I have been taking vit D for years. I also take Calcium. My labs showed my Calcium to be 9.2 and my Albumin to be 3.1. I will certainly take your advice and tell her that I want a free T4/3 testing. I am not certain if I should look for a Medical doctor or an Endocrinologist. If she doesn't comply with my request, I am going to drop her. My life does not feel quality right now. Before my thyroid surgery, I felt in good health, because I try to do all of the right things. I exercise at a gym, and have been for years, at least four times a week. I walk my dog for exercise. I am also on a good vitamin regimen, and eat fairly well. I think that I should feel better if It is at all possible. Thank you
Hi. Here's some info on my daughter. At 19 - married, living far away w/husband - she was found to have nodules. FNA was inconclusive. Thru blood tests found to be Hashimoto's and hypo. Removed half of her thyroid and was placed on Synthroid only for years. Her PCP changed it to LEVO and daughter became worse and gained weight rapidly. Became very ill. Immunity was quite low. Tested pos for Epstein Barr Virus. She was truly ill. Husband left her. She just began college :( Her PCP was not the one to handle her case for all she did was order new meds for this and that. Constipation was severe.
She finally moved back home and i took her to a new DO. He found in addition to Hashimoto's and being hypo she is gluten intolerant. Allergic to wheat, corn, dairy and soy. She has poly cystic ovarian syndrome, too. :(
He placed her on Cytomel. She began to improve.
She is on Iodoral - a small amount of iodine. Vit D3 (4000mgs a day with fattiest meal), Vit C, selenium, zinc B12, iron, Coconut oil caps, GLUTEN FREE DIET (must watch in beauty aids too), only organic unprocessed foods - NO FLUORIDE in water - toothpaste, canned goods, teas, etc, We have begun chiral balance and a new flour - farinetta - to help with PCOS for she will NOT take birth control pills. We need for her to increase her protein so I will find a powder that is gluten free made with raw whole food to take as well. We do alot of walking and she does yoga and/or zumba.
Brain fog has lessened. The facial hair is lighter. Her hair has stopped falling out. She is maintaining her weight. I am going to see her doctor about Iodine for my goiter which is getting large after finding in 2005. I am afraid of surgery and being placed on pills for life.
With the auto immune problems, each day is different. Her health is the priority here and we want to help her nutritionally. NO JUNK FOOD EVER or she is on the floor crying to go the ER with in hours. No one can digest the proteins in gluten. NO ONE. EVER. Blood test can reveal if you have a sensitivity or allergic reaction. Food is the main culprit of many diseases - but the meds don't cure them alone.
Hope this helps a bit. She is 25 years old. Divorced. Working on a degree. And i am gluten free, too. why not? There is NO benefit to gluten free. Good luck and good health to you. :)
She finally moved back home and i took her to a new DO. He found in addition to Hashimoto's and being hypo she is gluten intolerant. Allergic to wheat, corn, dairy and soy. She has poly cystic ovarian syndrome, too. :(
He placed her on Cytomel. She began to improve.
She is on Iodoral - a small amount of iodine. Vit D3 (4000mgs a day with fattiest meal), Vit C, selenium, zinc B12, iron, Coconut oil caps, GLUTEN FREE DIET (must watch in beauty aids too), only organic unprocessed foods - NO FLUORIDE in water - toothpaste, canned goods, teas, etc, We have begun chiral balance and a new flour - farinetta - to help with PCOS for she will NOT take birth control pills. We need for her to increase her protein so I will find a powder that is gluten free made with raw whole food to take as well. We do alot of walking and she does yoga and/or zumba.
Brain fog has lessened. The facial hair is lighter. Her hair has stopped falling out. She is maintaining her weight. I am going to see her doctor about Iodine for my goiter which is getting large after finding in 2005. I am afraid of surgery and being placed on pills for life.
With the auto immune problems, each day is different. Her health is the priority here and we want to help her nutritionally. NO JUNK FOOD EVER or she is on the floor crying to go the ER with in hours. No one can digest the proteins in gluten. NO ONE. EVER. Blood test can reveal if you have a sensitivity or allergic reaction. Food is the main culprit of many diseases - but the meds don't cure them alone.
Hope this helps a bit. She is 25 years old. Divorced. Working on a degree. And i am gluten free, too. why not? There is NO benefit to gluten free. Good luck and good health to you. :)
So sorry to hear of your not feeling well. We need to get you to a good thyroid doctor as soon as possible. I have a couple of names in your general area. Both names came from Forum members. I want to do a little further checking on them on Monday and then I'll send a PM. One is in the Westchester, Pa area and the other is in Voorheis, NJ. Should I check on both?
When you have a doctor that has the "Immaculate TSH Belief", you are assured of a dosage change when your TSH is suppressed like yours and you say something about your heart doing anything. Bingo, your dosage is reduced. LOL Of course, TSH itself produces no symptoms. It is only a messenger to the thyroid glands. Their fear is that TSH that is too low might be a sign of excessive thyroid hormone for you. If that might be the case, why not just test and confirm. Nope, just reduce meds, regardless of how you are feeling. Frustrating. By the way my TSH has been about .05 for over 25 years with no heart problems, but with lingering hypo symptoms until I learned about free T3 here and got my meds changed to include a source of T3.
As I said above, ---- "With you still having symptoms, you probably need to have your meds tweaked, but you first need to find out the levels of free T3 and free T4, to help guide med increases. For example if your FT3 is on the low end of the range, but FT4 is midpoint or higher, then just adding more T4 meds is not the best approach. In that case it would be better to include a source of T3 in your meds. Also, if you are not converting T4 to T3 very well, then that might indicate the need for testing of iron/ferritin and selenium. Also, if you haven't been tested for Vitamin D and B12, those are frequently found to be low for hypo patients."
If you can get these done with your current doctor, go ahead. Then you will have the info to show a good thyroid doctor when we get one located for you. If you wonder what a good thyroid doctor will do, have a look at this link. It is written by a doctor that regularly consults with patients who live some distance away. This letter is then sent to the PCP of the patient to guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
When you have a doctor that has the "Immaculate TSH Belief", you are assured of a dosage change when your TSH is suppressed like yours and you say something about your heart doing anything. Bingo, your dosage is reduced. LOL Of course, TSH itself produces no symptoms. It is only a messenger to the thyroid glands. Their fear is that TSH that is too low might be a sign of excessive thyroid hormone for you. If that might be the case, why not just test and confirm. Nope, just reduce meds, regardless of how you are feeling. Frustrating. By the way my TSH has been about .05 for over 25 years with no heart problems, but with lingering hypo symptoms until I learned about free T3 here and got my meds changed to include a source of T3.
As I said above, ---- "With you still having symptoms, you probably need to have your meds tweaked, but you first need to find out the levels of free T3 and free T4, to help guide med increases. For example if your FT3 is on the low end of the range, but FT4 is midpoint or higher, then just adding more T4 meds is not the best approach. In that case it would be better to include a source of T3 in your meds. Also, if you are not converting T4 to T3 very well, then that might indicate the need for testing of iron/ferritin and selenium. Also, if you haven't been tested for Vitamin D and B12, those are frequently found to be low for hypo patients."
If you can get these done with your current doctor, go ahead. Then you will have the info to show a good thyroid doctor when we get one located for you. If you wonder what a good thyroid doctor will do, have a look at this link. It is written by a doctor that regularly consults with patients who live some distance away. This letter is then sent to the PCP of the patient to guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
Once again, thank you so much for sharing your knowledge, and for your referrals.
Yes, I would like to know the names of both doctors. On Thesday, I have an appt. with my Primary care dr. I am taking a copy of the letter with me from the site you sent. I am going to him, because he has been taking care of me in general for many years. He found my thyroid problem and referred me to the endo that I have now. She then referred me to the surgeon that removed my thyroid. I will explain how I feel about my endo to him. I am also going to request more blood tests for T3/4 from him, instead of my endo. Now that I am gaining knowledge thanks to this forum, about my disease, I am ready to move on to feeling better at whatever cost.
Now, the next thing that I must do is learn how to interpret the numbers that are used by thyroid pts. What did you think about my TSH level being 0.9? Did that mean that I had too much TSH or too little? Remember, I had only been on the levothyroxin 100 mcg for a week, before she put me back down to 88mcg. Was that enough time for a blood test to give her a good reading. Everything that I read says it takes at least six to eight weeks to find out what is truly going on. When my TSH was at 1.25, my endo was estatic. She thought that was right where it should be, even though I felt crappy and had leg cramps. Go figure. You mentioned something about my TSH being suppressed. Did that mean that I did not have enough TSH?
I hope that I am not confusing you. Enjoy your Sunday.
Yes, I would like to know the names of both doctors. On Thesday, I have an appt. with my Primary care dr. I am taking a copy of the letter with me from the site you sent. I am going to him, because he has been taking care of me in general for many years. He found my thyroid problem and referred me to the endo that I have now. She then referred me to the surgeon that removed my thyroid. I will explain how I feel about my endo to him. I am also going to request more blood tests for T3/4 from him, instead of my endo. Now that I am gaining knowledge thanks to this forum, about my disease, I am ready to move on to feeling better at whatever cost.
Now, the next thing that I must do is learn how to interpret the numbers that are used by thyroid pts. What did you think about my TSH level being 0.9? Did that mean that I had too much TSH or too little? Remember, I had only been on the levothyroxin 100 mcg for a week, before she put me back down to 88mcg. Was that enough time for a blood test to give her a good reading. Everything that I read says it takes at least six to eight weeks to find out what is truly going on. When my TSH was at 1.25, my endo was estatic. She thought that was right where it should be, even though I felt crappy and had leg cramps. Go figure. You mentioned something about my TSH being suppressed. Did that mean that I did not have enough TSH?
I hope that I am not confusing you. Enjoy your Sunday.
The best suggestion I have for TSH is to basically overlook it. As I said above, TSH does not cause symptoms. It is only an indicator, and a poor one at that, of the levels of your thyroid hormones. Focus instead on symptom relief through adjustment of FT3 and FT4 levels. Many of our members have reported that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.
When I said that about the TSH being suppressed, I was talking about it being below the so-called "normal range. When that occurs, many doctors will mistakenly decide you have become hyper and want to reduce your meds. You really are hyper only if you have hyper symptoms due to having excessive levels of the biologically active thyroid hormones. Doctors will also frequently scare patients by telling them that suppressed TSH will cause heart problems and bone loss. This is also misinformation. I suggest that you read about this subject in this link.
http://www.hormonerestoration.com/Thyroid.html
And don't forget that when you request the additional testing, make sure to insist that it is free T3 and free T4, not total T3 and total T4.
I'll forward a PM after contacting those two doctors' offices tomorrow.
When I said that about the TSH being suppressed, I was talking about it being below the so-called "normal range. When that occurs, many doctors will mistakenly decide you have become hyper and want to reduce your meds. You really are hyper only if you have hyper symptoms due to having excessive levels of the biologically active thyroid hormones. Doctors will also frequently scare patients by telling them that suppressed TSH will cause heart problems and bone loss. This is also misinformation. I suggest that you read about this subject in this link.
http://www.hormonerestoration.com/Thyroid.html
And don't forget that when you request the additional testing, make sure to insist that it is free T3 and free T4, not total T3 and total T4.
I'll forward a PM after contacting those two doctors' offices tomorrow.
Thank you,
So glad to hear that your daughter is improving. Could please send me a list or direct me to a site for foods high in gluten.
Thank you.
So glad to hear that your daughter is improving. Could please send me a list or direct me to a site for foods high in gluten.
Thank you.
Today I visited my PCP. I insisted that he give me a prescription for blood tests for free T4/3, D, Cholesterol, and blood sugar. I had a better conversation with his medical assistant, who preceded him, than with him. In fact, she listened to my heart, took my pressure etc. He never touched me. This is a new thing having a medical assistant come in and get all of the information so that he wont have to spend as much time with his patients. I noticed on my last visit to my endo she was preceded by a medical assistant. Anyway, I will have these tests done in the next couple days. Usually, I would have had them done in his office, but by the time he got to me, the lab was closed. During our conversation, (and I was well prepared) about T3/4, he mentioned that the T3 is a tricky thing to monitor, and that the meds could cause bone loss and heart problems. Wow!! What is it with these doctors and the free T4/3 issue? Will keep you abreast of the lab results. Good night.
Bone loss and heart problems are frequently thrown around. I don't know if these doctors are somewhat misinformed, or if it is more of a scare tactic. It allows doctors to justify keeping your TSH at a higher level, but unfortunately that also quite often keeps you slightly hypo as well.
There is no good logic to saying that TSH that is suppressed when on thyroid meds is such a danger, when the active thyroid hormones, FT3 and FT4, are concurrently within the reference ranges that those same doctors consider as "normal". I also don't see that T3 is a tricky thing to monitor. What really is most important is symptoms, not test results.
What you really need to find is a good thyroid doctor that will treat you clinically, by testing and adjusting levels of the biologically active thyroid hormones, FT3 and FT4, as necessary to relieve symptoms, without being constrained by resultant TSH levels.
There is no good logic to saying that TSH that is suppressed when on thyroid meds is such a danger, when the active thyroid hormones, FT3 and FT4, are concurrently within the reference ranges that those same doctors consider as "normal". I also don't see that T3 is a tricky thing to monitor. What really is most important is symptoms, not test results.
What you really need to find is a good thyroid doctor that will treat you clinically, by testing and adjusting levels of the biologically active thyroid hormones, FT3 and FT4, as necessary to relieve symptoms, without being constrained by resultant TSH levels.
Yes, that is exactly what I am in the process of doing. I am calling the one that you referred to me to get an appt.
Hi,
Tried to contact the doctor (Dr. Anthony Jenkins) you called. The operator keeps saying that the number has been disconnected. Could you please give me the number again.
Thank you
Tried to contact the doctor (Dr. Anthony Jenkins) you called. The operator keeps saying that the number has been disconnected. Could you please give me the number again.
Thank you
Today my PCP called with the results of my blood work. I was at the gym so I did not get a chance to speak with him. I will give you what he left on my phone. He promised to send the report to me in the mail.
He said that my thyroid actually came out ok". TSH was .32, which is an appropriate level of suppression, FT4 was 1.6 which is normal, FT3 was 2.6. which is right in the normal range. I do not have the actual lab form yet, so I do not know what the lab range is. Vitamin D very good. He said he was pleased, and that my thyroid levels looked good on this level. He also said my cholesterol was high. The sites which you sent me said that high cholesterol was one of the things that happened when you are hypo. Is this suppression thing because of my 2 small cancers (less than 1cm) that were found in my thyroid? I think my endo said that this will help to keep it from coming back.
Now, what I cannot understand is if everything is sooo normal, why do I still feel like crap. Why am I still having muscular pains and spasms. Why is my hair so brittle, and my hands so dry? And, why am I going from hot to cold, cold to hot, among other various off and on symptoms.
Also is .32 higher or lower than 1.25, which is where my endo is trying to get me back to.
I really do not know if I am doing right or wrong, but I started myself back on 100 mcq Levo, instead of staying on the 88 mcq hoping that I would feel better. Is it dangerous for me to do this? Really do not know what to do until I get to the new doctor. I keep reading everything hoping that a light bulb will come on, and I will understand all of this.
Thanks for your help.
He said that my thyroid actually came out ok". TSH was .32, which is an appropriate level of suppression, FT4 was 1.6 which is normal, FT3 was 2.6. which is right in the normal range. I do not have the actual lab form yet, so I do not know what the lab range is. Vitamin D very good. He said he was pleased, and that my thyroid levels looked good on this level. He also said my cholesterol was high. The sites which you sent me said that high cholesterol was one of the things that happened when you are hypo. Is this suppression thing because of my 2 small cancers (less than 1cm) that were found in my thyroid? I think my endo said that this will help to keep it from coming back.
Now, what I cannot understand is if everything is sooo normal, why do I still feel like crap. Why am I still having muscular pains and spasms. Why is my hair so brittle, and my hands so dry? And, why am I going from hot to cold, cold to hot, among other various off and on symptoms.
Also is .32 higher or lower than 1.25, which is where my endo is trying to get me back to.
I really do not know if I am doing right or wrong, but I started myself back on 100 mcq Levo, instead of staying on the 88 mcq hoping that I would feel better. Is it dangerous for me to do this? Really do not know what to do until I get to the new doctor. I keep reading everything hoping that a light bulb will come on, and I will understand all of this.
Thanks for your help.
COMMUNITY LEADER
I totally agree with gimel -- ignore the TSH and work off your symptoms and Free T3 and Free T4 levels. But to answer your question, TSH of 0.32 is much lower than 1.25, though still in range. Like gimel, my TSH stays very low (usually < 0.01), and we don't even look at it; we go by the FT3 and FT4. I'm trying to figure out why they keep testing it.
Since you don't have the ranges for the FT3 and FT4, I can only guess, but judging from what we usually see, your FT4 appears quite high and your FT3 appears very low ............ In my opinion, even though your levels may fall within so-called "normal ranges", they are probably not "ok" for you.
It would appear that you may not be converting the FT4 to T3, which is most likely what's keeping you feeling ill. You might benefit greatly from a small dose of T3 med (cytomel).
Of course, keep in mind that it depends on the ranges used by your own lab, I could be way off. Please post those ranges as soon as you get them, because without them, we can only guess.
Since you don't have the ranges for the FT3 and FT4, I can only guess, but judging from what we usually see, your FT4 appears quite high and your FT3 appears very low ............ In my opinion, even though your levels may fall within so-called "normal ranges", they are probably not "ok" for you.
It would appear that you may not be converting the FT4 to T3, which is most likely what's keeping you feeling ill. You might benefit greatly from a small dose of T3 med (cytomel).
Of course, keep in mind that it depends on the ranges used by your own lab, I could be way off. Please post those ranges as soon as you get them, because without them, we can only guess.
Thank you Barb.
I will post them as soon as I receive them in the mail. After speaking with my PCP yesterday, I am convinced that he is not up on what is really happening as far as the thyroid goes. I told him that I was having muscular aches to the point of not being able to walk on Sunday (better now). His response was we have too look for something else, its not coming from the thyroid condition)". He obviously does not know this is one of the many symptoms.
I will post them as soon as I receive them in the mail. After speaking with my PCP yesterday, I am convinced that he is not up on what is really happening as far as the thyroid goes. I told him that I was having muscular aches to the point of not being able to walk on Sunday (better now). His response was we have too look for something else, its not coming from the thyroid condition)". He obviously does not know this is one of the many symptoms.
NEW LABS - PLEASE TELL ME WHAT YOU THINK.
REFERENCE RANGE
TSH 3rd GENERATION 0.32 L 0.40-4.50 mIU/L
T4, FREE 1.6 0.8-1.8 ng.dL
T3, FREE 2.6 2.3-4.2 pg/mL
CBC (INCLUDES DIFF/PLT)
WHITE BLOOD CELL COUNT 4.0 3.8-10.8 Thousand/uL
CALCIUM 9.2
REFERENCE RANGE
TSH 3rd GENERATION 0.32 L 0.40-4.50 mIU/L
T4, FREE 1.6 0.8-1.8 ng.dL
T3, FREE 2.6 2.3-4.2 pg/mL
CBC (INCLUDES DIFF/PLT)
WHITE BLOOD CELL COUNT 4.0 3.8-10.8 Thousand/uL
CALCIUM 9.2
COMMUNITY LEADER
Even though "in range", your FT3 is WAY too low........ this indicates that you aren't converting FT4 to T3........ I'd suggest that you try a small dose of a T3 med (cytomel or generic), to bring the FT3 up; also try taking a good quality selenium, which, studies have shown, "may" help with the conversion of FT4 to FT3.
You are right that muscular pains are common symptoms of hypothyroidism.... is it possible to get a referral to an endocrinologist? If not, you may have to look at finding a different pcp...........
Have you ever had tests for antibodies to confirm/rule out autoimmune thyroid disease?
You are right that muscular pains are common symptoms of hypothyroidism.... is it possible to get a referral to an endocrinologist? If not, you may have to look at finding a different pcp...........
Have you ever had tests for antibodies to confirm/rule out autoimmune thyroid disease?
I have an endocrinologist and a PCP. Unfortunately, they think alike. They both think that I am in perfect range. He keeps telling me that I am not hypothyroid. I thought when they removed your thyroid, that made you hypothyroid.I had to get my PCP to refer me for T4/3 testing, because my endo did not think that I needed it. I have an appointment with another doctor, referred to my by someone from this forum. He is supposed to deal with T4/3 issues. I pray that this turns out ok. My appt. is on the 17th of Feb. No, I do not believe that I have had an antibodies test. I have had a complete blood workup for everything else in the body though. Would the test be called an antibodies test? The other thing that I am not up on is the suppression thing. Why are they keeping me suppressed. What does that mean? Could you please explain that to me. Sept 30, 2010, they removed my thyroid. They found two less than 1 cm cancers. I did not have to take any other medicines, because they did not extend outside the parameters. I remember before my endo put me back on 88 mcq Levo from 100 mcq, I felt better, and my TSH was 09 L while on the 100 mcq. She put me back on 88 because during our visit she asked me if I could hear my heart thump when I was laying prone. I said yes. Thank you so much for helping me sort through this. If it were not for the people here, I don't know where I would be.
Feeling bad on my regimen of Levothoroxine 88 mcq. Having all kinds of symptoms. Spoke with my endocrinologist today to ask if she would consider adding T3 to my regimen. She does not EVER prescribe this. She kept saying that your labs are good, and that T3 causes heart problems. I explained that even though my labs look good on paper, my quality of life was not so good. I told her that I felt better on 100 mcq of Levo, but her response to that was "you have too much thyroid hormone when you are on l00 mcq, and I am afraid that you will become hyperthyroid, and develop arrythmia." I told her that I did not want to stay on Levo 88 and feel bad, when I do everything else in my life to feel good, i.e., exercise, diet........She could tell by my questions and answers that I was not feeling good with her. She suggested that I should get another opinion from another endocrinologist. I told her that I already planned to. She told me that I should not listen to what I read on the internet. My response was, I am trying to live the best life that I can with my disease, and I will listen, and read or whatever else it takes to get me to back to feeling and living well, and whole. She offeered a list of other endocrinologists. I asked did they practice intergrative medicine. She got quiet. The last thing that I need is to get another doctor that thinks as she does. I found it hard to believe that she could only go so far in helping me.
Hello,
Could you please explain what suppression means, and how low the suppression numbers should be. Also, is TSH used to make certain that you are suppressed. From what I've read, they seem to be very low numbers. If that is so, that means that I have never been suppressed by my lab TSH numbers. My endo never mentioned this to me. I found this out through reading. Is this suppression very important? Thank you.
Could you please explain what suppression means, and how low the suppression numbers should be. Also, is TSH used to make certain that you are suppressed. From what I've read, they seem to be very low numbers. If that is so, that means that I have never been suppressed by my lab TSH numbers. My endo never mentioned this to me. I found this out through reading. Is this suppression very important? Thank you.
When someone says that TSH is suppressed, they mean that it is below the ref range. Occasionally there are reasons that TSH suppression is advisable. Most of the time TSH becomes suppressed when taking significant dosages of thyroid meds. For example my TSH hs been about .05 for over 25 years, while taking a full daily replacement dose of Synthroid at that time. Even with this, I still had lingering hypo symptoms, which I later found out here was due to FT3 being low in its range. For all those years I had never been tested for total T3 or FT3 because they said it was "not necessary". After my meds were changed to Armour, and my FT3 increased, I have felt best ever.
Many times doctors will scare patients by saying that a suppressed TSH will cause bone loss or heart problems. These are only concerns when FT3 and FT4 are excessive. but they use that concern to justify their lack of further action to relieve symptoms by adjusting FT3 and FT4 adequately. A suppressed TSH does not automatically make you hyper. You are hyper only if you have hyper symptoms due to excessive FT3 and FT4.
In a nutshell, you need a good thyroid doctor that will treat you clinically by adjusting FT3 and FT4 adequately to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not test results. In fact I could give you a reference to a 15 year old study that concluded that trying to manage a patient by test results on the 5 major tests, TSH, TT3, FT3, TT4, and FT4 was basically useless. That it was better to treat clinically (by symptoms) and use test results only to monitor progress.
I think you might get some additional good insight from this link.
http://hormonerestoration.com/files/ThyroidPMD.pdf
Many times doctors will scare patients by saying that a suppressed TSH will cause bone loss or heart problems. These are only concerns when FT3 and FT4 are excessive. but they use that concern to justify their lack of further action to relieve symptoms by adjusting FT3 and FT4 adequately. A suppressed TSH does not automatically make you hyper. You are hyper only if you have hyper symptoms due to excessive FT3 and FT4.
In a nutshell, you need a good thyroid doctor that will treat you clinically by adjusting FT3 and FT4 adequately to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not test results. In fact I could give you a reference to a 15 year old study that concluded that trying to manage a patient by test results on the 5 major tests, TSH, TT3, FT3, TT4, and FT4 was basically useless. That it was better to treat clinically (by symptoms) and use test results only to monitor progress.
I think you might get some additional good insight from this link.
http://hormonerestoration.com/files/ThyroidPMD.pdf
Just to throw this in; The TSH is made by the pituitary gland and it lags weeks behind treatment. If you are ok in the Free T4 levels, you might still have a low TSH. the feedback loop is delicate and the numbers are not indicative of symptoms.
In other words, the Free T4 shows you are taking your medication, and the Free T3 shows how well it is being utilised. The pituitary gland will get the message that there is not enough or too much Free T4 and will send out the message to the thyroid (in your case not there) to adjust the Free T4. TSH is the hormone it sends out to do that. It takes weeks for the balance to adjust. So assuming the TSH on its own is going to give a true indication of your thyroid condition is not correct.
We people without a thyroid will continually struggle. ALL the information on dosing is done as if we are automatically hypo. There is no consideration for the fact the feedback loop is broken. Hence why it would be wise to opt to take some T3 supplement. If you can convince a doctor of that, I am sure you will be fine in no time!
Soon you will learn not to rely on the pathology levels and just learn to feel your own symptoms and what your body needs. Many people no longer get blood tests and just go by the fact when winter comes they need to slightly up their meds till summer time, then go back to the normal dose. Some people know when highly stressed they need to up their dose for a time, as well.
Good luck!
In other words, the Free T4 shows you are taking your medication, and the Free T3 shows how well it is being utilised. The pituitary gland will get the message that there is not enough or too much Free T4 and will send out the message to the thyroid (in your case not there) to adjust the Free T4. TSH is the hormone it sends out to do that. It takes weeks for the balance to adjust. So assuming the TSH on its own is going to give a true indication of your thyroid condition is not correct.
We people without a thyroid will continually struggle. ALL the information on dosing is done as if we are automatically hypo. There is no consideration for the fact the feedback loop is broken. Hence why it would be wise to opt to take some T3 supplement. If you can convince a doctor of that, I am sure you will be fine in no time!
Soon you will learn not to rely on the pathology levels and just learn to feel your own symptoms and what your body needs. Many people no longer get blood tests and just go by the fact when winter comes they need to slightly up their meds till summer time, then go back to the normal dose. Some people know when highly stressed they need to up their dose for a time, as well.
Good luck!
The people on this forum have been so helpful, that I cannot thank you enough. But, know in my heart that I will always remember the help that you have been. It is because of you, that I now know how to listen to my body, and have the courage to seek further knowledge, and help. I am stronger because of you.
I have a new endo who I will meet with on the 17th. Hopefully, together, we will be able to make me feel better. The hardest thing for me to grasp is that there are doctors out here who do not really know, and are so closed down that they are not trying to learn. But, now I get it. Will keep you updated on my progress every now and then. Bless you, thank you, and continue to do well.
I have a new endo who I will meet with on the 17th. Hopefully, together, we will be able to make me feel better. The hardest thing for me to grasp is that there are doctors out here who do not really know, and are so closed down that they are not trying to learn. But, now I get it. Will keep you updated on my progress every now and then. Bless you, thank you, and continue to do well.
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A good thyroid doctor will treat a thyroid patient clinically, by testing and adjusting free T3 and free T4 with medication adequate to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not test results.
Leg cramps are one of the symptoms listed in this link. Do you have other symptoms as well?
http://www.endocrineweb.com/conditions/thyroid/hypothyroidism-too-little-thyroid-hormone
With you still having symptoms, you probably need to have your meds tweaked, but you first need to find out the levels of free T3 and free T4, to help guide med increases. For example if your FT3 is on the low end of the range, but FT4 is midpoint or higher, then just adding more T4 meds is not the best approach. In that case it would be better to add a source of T3 to your meds. Also, if you are not converting T4 to T3 very well, then that might indicate the need for testing of iron/ferritin and selenium. Also, if you haven't been tested for Vitamin D and B12, those are frequently found to be low for hypo patients.
So I suggest that you go back and get that testing done (insist if necessary) and then when available, get a copy of the lab report and post results and reference ranges here. Members will be glad to help interpret and advise further.