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Symptoms come and go - hasi hypo
I've had hashimoto's hypothyroiditis for about 5 years. My TSH has been about 1 (in the normal range) for about 4 years since taking synthroid. However, every couple of weeks I get some sort of "attack of symptoms" including body aches, extreme fatigue, and mild nausea, foggy-mind. They lasts about 3 days and then goes away for a couple weeks only to return again. All my labs and medical tests are normal expect for the antibodies for hashiomotos. TSH has been in normal range since I've been on synthroid. Any one else have these strange "attacks" or chronic symptoms coming and going due to Hashimotos? Any thoughts?
Hi there, I am in the same position as you, I live in a small village in rural Bulgaria, and the dr's in this area are not all that sophisticated, my endo has refused to test free T3&T4, saying it is a waste of time and money.
I am not feeling unwell, yet, having only just found out I am hypo after having 2/3rds of my thryoid removed due to a benign fast growing nodule plus more were found while under the knife.
I am going to get the tests done myself, however then I need to find someone who is willing to do what needs to be done with them, that will be the hard part.
Good luck in your search :)
Nikki
I am not feeling unwell, yet, having only just found out I am hypo after having 2/3rds of my thryoid removed due to a benign fast growing nodule plus more were found while under the knife.
I am going to get the tests done myself, however then I need to find someone who is willing to do what needs to be done with them, that will be the hard part.
Good luck in your search :)
Nikki
Get a new Dr. he will never treat you to make you feel well unless it is pure luck! TSH alone is virtually worthless.
Clinical treatment is the best way to go. You seriously need to be tested for Free T3 and Free T4. TSH is a pituitary hormone that is only an implied representation of the actual thyroid hormones. TSH can be affected by so many variables, why place so much reliance on it instead of just testing the actual, biologically active thyroid hormones? Makes no sense to me.
Seems to me that you have two options. One is to present some of the info we have given you to the doctor and then beat him into submission, to get the testing done. Unfortunately, even if you succeed in that you will then have another battle on your hands to get past "Reference range Endocrinology", by which they will tell you that any test result that falls anywhere in the reference range is adequate for you. This is very wrong as well.
The second option is to find that good thyroid doctor that will treat you clinically, for symptoms, by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.
If you notice, both options likely end up with you needing a good thyroid doctor. What part of NY are you located in? Perhaps members could recommend a good thyroid doctor for you.
Seems to me that you have two options. One is to present some of the info we have given you to the doctor and then beat him into submission, to get the testing done. Unfortunately, even if you succeed in that you will then have another battle on your hands to get past "Reference range Endocrinology", by which they will tell you that any test result that falls anywhere in the reference range is adequate for you. This is very wrong as well.
The second option is to find that good thyroid doctor that will treat you clinically, for symptoms, by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.
If you notice, both options likely end up with you needing a good thyroid doctor. What part of NY are you located in? Perhaps members could recommend a good thyroid doctor for you.
Thank you for the info. Both endos and my pcp MD only test TSH. Current endo has flat out told he thinks it's pointless to test T3 or T4 if TSH is normal. This is so confusing.
barb135 offers excellent advice.
Ny1234; Do you know how the Thyroid process/system works in general?
I could cut & paste in or private message you on this forum with a layman's version of how the whole process works including TSH, T4 and T3. I tried to use an analogy of a home heating system to help explain and understand what goes on.
in an automobile terms. Testing only TSH is like trying to determine the oil level in your car's engine by looking at the engine temperature gauge. When it is low it might start heating up but it is completely impossible to accurately determine the amount of the critical oil is to the car's engine. Testing TSH is like looking at the temp gauge. if the temp is in "normal range" they say that the oil level is fine. However you could be dangerously low on oil in actuallity. Testing FT4 is like looking at the oil pressure gauge. Again this is slightly better and more accurate as the oil level gets low you may get hotter oil and thinner oil and thus the pressure will go down. But while better than the temp gauge it is not sufficient. Testing for Free T3 is like actually raising the hood and pulling out the oil dipstick and actually measuring the amount of oil in the engine.
As you can see. Testing only TSH will be insufficient to tell you your status. Only by testing the dipstick with Free T3 and actually observing the level (taking into account your clinical symptoms) will a proper diagnosis be possible.
Ny1234; Do you know how the Thyroid process/system works in general?
I could cut & paste in or private message you on this forum with a layman's version of how the whole process works including TSH, T4 and T3. I tried to use an analogy of a home heating system to help explain and understand what goes on.
in an automobile terms. Testing only TSH is like trying to determine the oil level in your car's engine by looking at the engine temperature gauge. When it is low it might start heating up but it is completely impossible to accurately determine the amount of the critical oil is to the car's engine. Testing TSH is like looking at the temp gauge. if the temp is in "normal range" they say that the oil level is fine. However you could be dangerously low on oil in actuallity. Testing FT4 is like looking at the oil pressure gauge. Again this is slightly better and more accurate as the oil level gets low you may get hotter oil and thinner oil and thus the pressure will go down. But while better than the temp gauge it is not sufficient. Testing for Free T3 is like actually raising the hood and pulling out the oil dipstick and actually measuring the amount of oil in the engine.
As you can see. Testing only TSH will be insufficient to tell you your status. Only by testing the dipstick with Free T3 and actually observing the level (taking into account your clinical symptoms) will a proper diagnosis be possible.
COMMUNITY LEADER
You can't treat low Free T3 and Free T4 (always make sure to specify "Free"), without having them tested.
Even though you've been to 2 endos, it sounds like you might need to find another. Many doctors, including endos, think that testing and treating TSH levels is adequate, when it's not.
Many doctors also believe that Synthroid is the gold standard in the treatment of hypothyroidism, when, in fact, there are several good medications that will do just as good (or better) as Synthroid.
I used to have short periods of time, during which my symptoms would return - actually, still do, but as my FT4 and FT3 levels got closer to where I need them to be, those episodes get fewer and farther between. My TSH stays at < 0.01, but we don't even look at that, so long as my FT levels are good.
You should "pre interview" doctors prior to making an appointment - this will save precious time and $ in finding a new doctor. You can do this over the phone, or fax.... Make up a list of questions, then call the doctor's office and ask to speak with the doctor's nurse.
Ask, at least, the following questions:
1) Is the doctor willing to treat, based on symptoms, rather than simply lab results and specifically TSH?
2) Does the doctor routinely test Free T3 and Free T4, along with TSH?
3) Does the doctor actually base dosing on FT3, FT4 levels, along with symptoms vs simply looking at TSH?
4) Is the doctor willing to prescribe medications containing T3, such as cytomel or dessicated medications such as Armour or ERFA?
5) Is the doctor willing to try different medications and prescribe whichever one works best for you? This could include, but is not limited to Synthroid, generic levo, levoxyl, Tirosint, cytomel, Armour or ERFA (dessicated pig thyroid), specially compounded medications, etc.
Other members may have more questions; however, if the answer to any one of these, above, is "no", move on to the next doctor. Don't feel badly about not sticking to one doctor; if they aren't treating you properly, they will keep you ill. My former pcp kept me ill for over a year, because he would only look at TSH, not symptoms or my FT levels.
Also, be sure to read the letter, for which gimel posted the link. This is an excellent letter and if you print it out and take it with you to your doctors, maybe it will help you. If they don't pay attention, don't stick with them.
Even though you've been to 2 endos, it sounds like you might need to find another. Many doctors, including endos, think that testing and treating TSH levels is adequate, when it's not.
Many doctors also believe that Synthroid is the gold standard in the treatment of hypothyroidism, when, in fact, there are several good medications that will do just as good (or better) as Synthroid.
I used to have short periods of time, during which my symptoms would return - actually, still do, but as my FT4 and FT3 levels got closer to where I need them to be, those episodes get fewer and farther between. My TSH stays at < 0.01, but we don't even look at that, so long as my FT levels are good.
You should "pre interview" doctors prior to making an appointment - this will save precious time and $ in finding a new doctor. You can do this over the phone, or fax.... Make up a list of questions, then call the doctor's office and ask to speak with the doctor's nurse.
Ask, at least, the following questions:
1) Is the doctor willing to treat, based on symptoms, rather than simply lab results and specifically TSH?
2) Does the doctor routinely test Free T3 and Free T4, along with TSH?
3) Does the doctor actually base dosing on FT3, FT4 levels, along with symptoms vs simply looking at TSH?
4) Is the doctor willing to prescribe medications containing T3, such as cytomel or dessicated medications such as Armour or ERFA?
5) Is the doctor willing to try different medications and prescribe whichever one works best for you? This could include, but is not limited to Synthroid, generic levo, levoxyl, Tirosint, cytomel, Armour or ERFA (dessicated pig thyroid), specially compounded medications, etc.
Other members may have more questions; however, if the answer to any one of these, above, is "no", move on to the next doctor. Don't feel badly about not sticking to one doctor; if they aren't treating you properly, they will keep you ill. My former pcp kept me ill for over a year, because he would only look at TSH, not symptoms or my FT levels.
Also, be sure to read the letter, for which gimel posted the link. This is an excellent letter and if you print it out and take it with you to your doctors, maybe it will help you. If they don't pay attention, don't stick with them.
Thanks. HOW do they treat T3 and T4 levels?? What medicaltion is prescribed? I've been to two endocrinologists, plus my pcp MD and none are willing change treatment as my TSH is normal (or at 1) on synthroid. They say synthroid is treatment standard. I don't even think last MD believed I was have these horrible "symptom attacks" on and off. I feel ok for 2 weeks and then boom, all the symptoms as back for a couple days. What would I be prescribed for low T3 and T4?? My endo doesn't even run a test for T3 or T4!!
I agree with the info from flyingfool. Just wanted to add that what you need is a good thyroid doctor, by which I mean one that will treat you clinically, for symptoms, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
You can get some good insight into clinical treatment from this link to a letter written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
You can get some good insight into clinical treatment from this link to a letter written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
TSH is a poor indicator of Thyroid function. It is a screening tool at best.
You need to get tested for Free T4 and Free T3.
MANY, MANY people are still Hypo even when in reference ranges. Most people seem to get symptom relief when their FT4 is in the MIDDLE if not slightly above mid range AND their FT3 are in the UPPER 1/3 of the range.
When taking Thyroid meds it is not uncommon for the medication to suppress TSH making it worthless as any means of determining Thyroid function. Yet many Drs apparently are not aware of this or chose not to believe it.
It is not uncommon for people to have their TSH nearly at ZERO and still in reality be Hypo. Yet the Dr's will panic and reduce medication believing falsely that the person is Hyper. The EXACT wrong thing to do.
Therefore insist on getting the FT4 and FT3 tests done. Do not accept no for an answer. Ft3 seems particularly difficult to get most Dr's to test for. FT4 they are a bit more willing.
Understand that if you are somewhere within the range on one or both of these tests, it by no means means that you are not Hypo. Do NOT let the Dr's convince you otherwise. It that is the case, start looking for another Dr. If you have Hypo symptoms then you are hypo.
You need to get tested for Free T4 and Free T3.
MANY, MANY people are still Hypo even when in reference ranges. Most people seem to get symptom relief when their FT4 is in the MIDDLE if not slightly above mid range AND their FT3 are in the UPPER 1/3 of the range.
When taking Thyroid meds it is not uncommon for the medication to suppress TSH making it worthless as any means of determining Thyroid function. Yet many Drs apparently are not aware of this or chose not to believe it.
It is not uncommon for people to have their TSH nearly at ZERO and still in reality be Hypo. Yet the Dr's will panic and reduce medication believing falsely that the person is Hyper. The EXACT wrong thing to do.
Therefore insist on getting the FT4 and FT3 tests done. Do not accept no for an answer. Ft3 seems particularly difficult to get most Dr's to test for. FT4 they are a bit more willing.
Understand that if you are somewhere within the range on one or both of these tests, it by no means means that you are not Hypo. Do NOT let the Dr's convince you otherwise. It that is the case, start looking for another Dr. If you have Hypo symptoms then you are hypo.
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