# I need some answers



## arizonamom (Mar 10, 2010)

Hey all: I'm new to this board and I'm hoping someone on here can help me out. I've been battling what I think is thyroid disease for the last 4 years. I've had all the ths, t3/t4/anitibodies tests done and they are all in the "normal" range. My last TSH was 1.8 on a .4 to 4.0 scale. I did just recently (2 weeks ago) have the right side of my thyroid removed (along with the ithsmus) because of nodules (2 biopsies were inconclusive). My endo, who I do like, keeps telling me that since my TSH is in the "normal" range, there's nothing that can be done. However, I have lots of hyperthyroid symptoms: hair loss, fatigue, anxiety/panic attacks, sometimes a constant hunger, muscle weakness, heat intollerance (which sucks cause I live in Phoenix!). Is it possible to have a TSH of 1.8 and still be hyperthyroid? Thanks for any input you might have. :confused0031:


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## Andros (Aug 26, 2009)

arizonamom said:


> Hey all: I'm new to this board and I'm hoping someone on here can help me out. I've been battling what I think is thyroid disease for the last 4 years. I've had all the ths, t3/t4/anitibodies tests done and they are all in the "normal" range. My last TSH was 1.8 on a .4 to 4.0 scale. I did just recently (2 weeks ago) have the right side of my thyroid removed (along with the ithsmus) because of nodules (2 biopsies were inconclusive). My endo, who I do like, keeps telling me that since my TSH is in the "normal" range, there's nothing that can be done. However, I have lots of hyperthyroid symptoms: hair loss, fatigue, anxiety/panic attacks, sometimes a constant hunger, muscle weakness, heat intollerance (which sucks cause I live in Phoenix!). Is it possible to have a TSH of 1.8 and still be hyperthyroid? Thanks for any input you might have. :confused0031:


It certainly is possible. The TSH does not always reflect the true nature of what is going on and by your description, you sure do sound hyperthyroid.

What antibodies' tests have you had done?

Welcome to the Board!

In order to find out if you are hyperthyroid, one needs to have the FREE T4 and FREE T3 test plus TSI (thyroid stimulating immunoglobulin.) TSI is only present if the patient is hyper for the TSI is what is actually causing the hyper. The healthy patient should have NO TSI.

Here is a reference for the above statement......
http://graves.medshelf.org/Lab_Tests

This site also explains the difference between the T4, T3 tests and the Free T4 and T3 tests. You need to get the Frees done.

TSH at the same time would be good. When you get the results, if you will be so kind, post them here. The "ranges" must be included as different labs use different ranges.

How were your nodules discovered in the first place? What prompted the surgery? I ask because cancer of the thyroid often causes hyperthyroid as well.


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## arizonamom (Mar 10, 2010)

Andros, thanks for the reply. My nodules were found manually by my endo. She then did an ultrasound to confirm. Another ultrasound was done 6 months later to see if the nodule had grown. It had, so a needle biopsy was done that came back inconclusive. Another was performed with the same results. Since the nodule was growing, she and I discussed letting it be and rechecking for size, or, since the biopsy was inconclusive, taking it out. I opted for surgery. The pathology report showed no cancer, thank goodness.

I can't remember which tests, other than TSH, she had done this past Monday. I should have the results tomorrow/Monday and will post the results. I don't think an anitbody test(s) was done as I've had them done before and she told me they were fine. I'll ask for a copy of all thyroid tests done in the past as well as this current one and then post all my "numbers" on here as soon as I get them. If I'm lacking any tests, such as the ones you mentioned, I'll tell her I'd like them done also.

Thanks for the link to the graves info. I really appreciate your input.

Until later.....

Leslie


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## Andros (Aug 26, 2009)

arizonamom said:


> Andros, thanks for the reply. My nodules were found manually by my endo. She then did an ultrasound to confirm. Another ultrasound was done 6 months later to see if the nodule had grown. It had, so a needle biopsy was done that came back inconclusive. Another was performed with the same results. Since the nodule was growing, she and I discussed letting it be and rechecking for size, or, since the biopsy was inconclusive, taking it out. I opted for surgery. The pathology report showed no cancer, thank goodness.
> 
> I can't remember which tests, other than TSH, she had done this past Monday. I should have the results tomorrow/Monday and will post the results. I don't think an anitbody test(s) was done as I've had them done before and she told me they were fine. I'll ask for a copy of all thyroid tests done in the past as well as this current one and then post all my "numbers" on here as soon as I get them. If I'm lacking any tests, such as the ones you mentioned, I'll tell her I'd like them done also.
> 
> ...


Hi, Leslie!!! Well, several of us will be interested in looking at some of your test results and ranges.

Your doctor sounds like she is on it though. However, not all test results are fine. Especially when it comes to thyroid. A good example is the TSI. They do provide ranges for TSI "because" w/o a range, you can't tell if there has been any movement w/ subsequent testing. However, as pointed out, the well patient should have absolutely NO TSI. A lot of doctors are just too busy to be up on the details sometimes and they see something is in range and say it is fine.


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## arizonamom (Mar 10, 2010)

Andros: Thanks again for your imput. I should have the test results today, I hope, but Monday for sure. I will ask her about the tests you suggested, esp. the TSI as I don't believe that has ever been done on me. She may be hesitant, given my other tests were "normal", but I will push for them. If she won't do them, then I will find someone who will.

Hope you have a good, relaxing weekend.

Leslie


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## Andros (Aug 26, 2009)

arizonamom said:


> Andros: Thanks again for your imput. I should have the test results today, I hope, but Monday for sure. I will ask her about the tests you suggested, esp. the TSI as I don't believe that has ever been done on me. She may be hesitant, given my other tests were "normal", but I will push for them. If she won't do them, then I will find someone who will.
> 
> Hope you have a good, relaxing weekend.
> 
> Leslie


I sure will be looking forward to seeing your labs and ranges and I hope you have a wonderful weekend as well.

Pouring here in Georgia but we will find something to do anyway. LOL!


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## arizonamom (Mar 10, 2010)

Just got back my latest labs today - had surgery three weeks ago to remove right side of my thyroid (see my first posting). I was mistaken when I stated that my last TSH was 1.8. It was actually 1.27 and that was on Dec. 17th 2009. So, today I was told that my TSH is now 3.17 and my vitamin D is low, my calcium levels are ok. That was the extent of the tests. Frustrating. My TSH has more than doubled since my surgery which I suppose is not unexpected since I had half of my thyroid removed. I asked my endo dr's nurse to relay a message to her - I want each and every thyroid test run - anitbodies, t3, t4 and free on both and anything else there is. I have been feeling so darn crappy (see my first posting) and I know I just had surgery, but this has been going on for over 4 years - slowing building up in that period of time.

I have low body temperature and it's been like this for about 4 years now - runs in the low to mid 97s and sometimes even in the upper 96s. WHile I was in the hospital, it even registered in the 95s twice! I have been reading about Wilson's Temperature Syndrome and was wondering if anyone else has heard of this or has experienced this. I filled out their symptoms questionaire and had at least 75% of the symptoms!

Well, that's all for now. I will hopefully hear back from my endo doc/nurse tomorrow with to go-ahead for more tests - if not I will be seeking another doc who will listen to me.


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## Andros (Aug 26, 2009)

arizonamom said:


> Just got back my latest labs today - had surgery three weeks ago to remove right side of my thyroid (see my first posting). I was mistaken when I stated that my last TSH was 1.8. It was actually 1.27 and that was on Dec. 17th 2009. So, today I was told that my TSH is now 3.17 and my vitamin D is low, my calcium levels are ok. That was the extent of the tests. Frustrating. My TSH has more than doubled since my surgery which I suppose is not unexpected since I had half of my thyroid removed. I asked my endo dr's nurse to relay a message to her - I want each and every thyroid test run - anitbodies, t3, t4 and free on both and anything else there is. I have been feeling so darn crappy (see my first posting) and I know I just had surgery, but this has been going on for over 4 years - slowing building up in that period of time.
> 
> I have low body temperature and it's been like this for about 4 years now - runs in the low to mid 97s and sometimes even in the upper 96s. WHile I was in the hospital, it even registered in the 95s twice! I have been reading about Wilson's Temperature Syndrome and was wondering if anyone else has heard of this or has experienced this. I filled out their symptoms questionaire and had at least 75% of the symptoms!
> 
> Well, that's all for now. I will hopefully hear back from my endo doc/nurse tomorrow with to go-ahead for more tests - if not I will be seeking another doc who will listen to me.


Geez! AACE recommends the range for TSH to be 0.3-3.0 so you are creeping up there and besides, most of us feel best down around 1 or less and the FREE T4 and FREE T3 tests are ultra-important right now.

Your doctor is cruel to let you suffer. I believe you should be on thyroxine medication NOW and truth be told, you may have to find a new doctor if this one won't think outside of the box and help you on your healing pathway.

See how mad I get?:anim_08:

Please let us know what your game plan is re the above.


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## arizonamom (Mar 10, 2010)

Andros said:


> Geez! AACE recommends the range for TSH to be 0.3-3.0 so you are creeping up there and besides, most of us feel best down around 1 or less and the FREE T4 and FREE T3 tests are ultra-important right now.
> 
> Your doctor is cruel to let you suffer. I believe you should be on thyroxine medication NOW and truth be told, you may have to find a new doctor if this one won't think outside of the box and help you on your healing pathway.
> 
> ...


I just heard from my endo's nurse to day. She has agreed to my request to run more thyroid tests! Yipee! I'm sure she's shaking her head in disagreement, but at least she listened to me. Might help that I used to be her kids' teacher so I've known her for a few years before she ended up as my endo.

Also, the TSH range used by the labs that run my bloodwork is .4-4.0.

Anyway, the lab paperwork is waiting for me to pick it up and have those tests run!! I will be sure to carefully check the paperwork over to make sure every test imaginable is on there before getting my blood drawn.

I will post the results as soon as I can. Probably will be in the next ten days, depending on when the labs are done. Thanks again for all your support!!


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## Andros (Aug 26, 2009)

arizonamom said:


> I just heard from my endo's nurse to day. She has agreed to my request to run more thyroid tests! Yipee! I'm sure she's shaking her head in disagreement, but at least she listened to me. Might help that I used to be her kids' teacher so I've known her for a few years before she ended up as my endo.
> 
> Also, the TSH range used by the labs that run my bloodwork is .4-4.0.
> 
> ...


You are welcome. We do that support thing pretty good here!!arty0009:

Keep us informed and thank you for the update. This is good news.


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## arizonamom (Mar 10, 2010)

I finally spoke to my endo today about my latest labs. She said my TSH was still around 3.27 but my Free T4 was low - 0.97 (on a scale where 0.67 is the lowest end). So, she is putting me on a low dose of Levothyroxine to see if it helps with my exhaustion issues. I asked her to send me a copy of my labs so I can see what the other levels were - I am assuming they are in the normal range as she didn't mention any other issue to me.

My question is this - do you think that this is the right course of action for my low Free T4 levels?

Again, thanks to everyone for their insight and help!!


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## Andros (Aug 26, 2009)

arizonamom said:


> I finally spoke to my endo today about my latest labs. She said my TSH was still around 3.27 but my Free T4 was low - 0.97 (on a scale where 0.67 is the lowest end). So, she is putting me on a low dose of Levothyroxine to see if it helps with my exhaustion issues. I asked her to send me a copy of my labs so I can see what the other levels were - I am assuming they are in the normal range as she didn't mention any other issue to me.
> 
> My question is this - do you think that this is the right course of action for my low Free T4 levels?
> 
> Again, thanks to everyone for their insight and help!!


Absolutely; when the Frees are low that means the TSH keeps on creeping up! I am so glad she relented on this.

You must share your labs and ranges when you get them. Also, what thyroxine will you be on and how much and when does she want you to lab again? You should be having labs every 8 weeks during the titration process.


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## arizonamom (Mar 10, 2010)

Andros said:


> Absolutely; when the Frees are low that means the TSH keeps on creeping up! I am so glad she relented on this.
> 
> You must share your labs and ranges when you get them. Also, what thyroxine will you be on and how much and when does she want you to lab again? You should be having labs every 8 weeks during the titration process.


I finally got my prescription filled today!! My endo put me on Levoxyl (Levothyroxine) 0.025mg (25mcg) once a day (first thing in the morning before breakfast). Hopefully this will help pull me out of my exhaustion (I would imagine it will take several weeks before I might notice a change since the dosage is so low). I've never been so tired in my life nor has my body ever felt so achy. I am so tired I find it almost impossible to do anything. I have been trying to take some walks because our Arizona weather is so nice, but I am completely worn out by the time I'm done. I thought the walks would lift me up, but they are definitely doing the opposite.

I am still waiting for a copy of my most current labs. I have called my endo's office twice and left a message with her nurse to fax them to me, but so far no fax. Kind of frustrating but I know her office is super busy so I will keep trying until successful. As soon as I get a copy, I will post my lab info.

She wants me to redo my labs in 6 to 8 weeks.

Again, thanks for all of the wonderful advice and encouragement!!


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## Andros (Aug 26, 2009)

arizonamom said:


> I finally got my prescription filled today!! My endo put me on Levoxyl (Levothyroxine) 0.025mg (25mcg) once a day (first thing in the morning before breakfast). Hopefully this will help pull me out of my exhaustion (I would imagine it will take several weeks before I might notice a change since the dosage is so low). I've never been so tired in my life nor has my body ever felt so achy. I am so tired I find it almost impossible to do anything. I have been trying to take some walks because our Arizona weather is so nice, but I am completely worn out by the time I'm done. I thought the walks would lift me up, but they are definitely doing the opposite.
> 
> I am still waiting for a copy of my most current labs. I have called my endo's office twice and left a message with her nurse to fax them to me, but so far no fax. Kind of frustrating but I know her office is super busy so I will keep trying until successful. As soon as I get a copy, I will post my lab info.
> 
> ...


Very execellent. 6 to 8 weeks is ideal for labs at which point your doctor will most likely raise your Levoxyl upward (titration process.)

It takes about 8 weeks for T4 to build up in the system.

So, you must share with us how your feeling during this process and it would be a good idea for you to keep a diary for yourself as well.

Hope you get those lab copies.


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## arizonamom (Mar 10, 2010)

Andros: Keeping a diary is a great idea. I just happen to have one and will make it my "road to recovery" diary. I really hope that the Levoxyl is one of the key ingredients to my recovery. I know that getting more sleep (and being on a better sleep schedule) will help also. I am about to call my endo office right now for those lab results and will post them, hopefully today.


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## Andros (Aug 26, 2009)

arizonamom said:


> Andros: Keeping a diary is a great idea. I just happen to have one and will make it my "road to recovery" diary. I really hope that the Levoxyl is one of the key ingredients to my recovery. I know that getting more sleep (and being on a better sleep schedule) will help also. I am about to call my endo office right now for those lab results and will post them, hopefully today.


You will find that keeping a journal is going to come in really handy some day. Especially when you start feeling better, you will have your dosage amount, your labs and all of that to "prove it" if need be.

Make notations of your bad days (symptoms), your good days and why you think you feel better and so on. You are going to be surprised at the value in this.

Also, I take a stamped, self-addressed envelope with me when I get my labs. The staff really appreciates that and I "always" get my labs in a timely fashion.

I mark on the bottom left of the envelope the date of the labs. So all I have to do is file the envelopes.


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## arizonamom (Mar 10, 2010)

Andros said:


> You will find that keeping a journal is going to come in really handy some day. Especially when you start feeling better, you will have your dosage amount, your labs and all of that to "prove it" if need be.
> 
> Make notations of your bad days (symptoms), you good days and why you think you feel better and so on. You are going to be surprised at the value in this.
> 
> ...


Thanks for all the good advise on the journal. I started it today, as this was day one of the start of my thyroid meds.

I got a copy of my labs today, finally. Here are the results:

THS 3.230 (0.400 - 4.00)
Free T4 0.97 (0.63-1.67)
T3 90.80 (81 - 178.0)
Anti-TGA (ATG) <20.0 (0.0 - 40.0)
Anti-TPO (ATA) 16.3 (0.0 - 34.0)

Taking Levoxyl 0.25mg (25mcg) once a day.

I thought my endo ran the Free T3 also, but I guess not. I know I had asked for it - isn't it more conclusive than the regular T3?

Ok, from the looks of my lab results, do you think I'm on the right course with my thyroid meds?

Thanks again for your input!


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## Lovlkn (Dec 20, 2009)

> I thought my endo ran the Free T3 also, but I guess not. I know I had asked for it - isn't it more conclusive than the regular T3?


A Total 3 will work for now and is on the low side as well.

You got what you needed with the low dose of levo just be sure when they refill your prescription you get the same brand for accurate labs.


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## Andros (Aug 26, 2009)

arizonamom said:


> Thanks for all the good advise on the journal. I started it today, as this was day one of the start of my thyroid meds.
> 
> I got a copy of my labs today, finally. Here are the results:
> 
> ...


Hi! Yeah, I would say you are going to benefit greatly from the thyroxine replacement. TSH getting out of hand and the FT4 and T3 are really low.

What is the Anti-TGA? I put it in my search engine and it turned zilch. Anti-thyroglobulin antibody, maybe?

Good about the journal. You will be amazed.


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## peaches (Sep 29, 2009)

arizonamom said:


> Just got back my latest labs today - had surgery three weeks ago to remove right side of my thyroid (see my first posting). I was mistaken when I stated that my last TSH was 1.8. It was actually 1.27 and that was on Dec. 17th 2009. So, today I was told that my TSH is now 3.17 and my vitamin D is low, my calcium levels are ok. That was the extent of the tests. Frustrating. My TSH has more than doubled since my surgery which I suppose is not unexpected since I had half of my thyroid removed. I asked my endo dr's nurse to relay a message to her - I want each and every thyroid test run - anitbodies, t3, t4 and free on both and anything else there is. I have been feeling so darn crappy (see my first posting) and I know I just had surgery, but this has been going on for over 4 years - slowing building up in that period of time.
> 
> I have low body temperature and it's been like this for about 4 years now - runs in the low to mid 97s and sometimes even in the upper 96s. WHile I was in the hospital, it even registered in the 95s twice! I have been reading about Wilson's Temperature Syndrome and was wondering if anyone else has heard of this or has experienced this. I filled out their symptoms questionaire and had at least 75% of the symptoms!
> 
> Well, that's all for now. I will hopefully hear back from my endo doc/nurse tomorrow with to go-ahead for more tests - if not I will be seeking another doc who will listen to me.


I found Wilson's temperature syndrome on Wikipedia.
wikipedia.org/wiki/Wilson's_syndrome

I too have temperature issues. My temp. is anywhere from 95 degrees to 97 degrees. 96.3 seems to be the average.

I also read some information about a doctor Rind that seems to make a lot of sense to me. He has charts that you can use to help you regulate things. I notice most of my night time issues around midnight to 3am.


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## arizonamom (Mar 10, 2010)

peaches said:


> I found Wilson's temperature syndrome on Wikipedia.
> wikipedia.org/wiki/Wilson's_syndrome
> 
> I too have temperature issues. My temp. is anywhere from 95 degrees to 97 degrees. 96.3 seems to be the average.
> ...


Peaches:

Thanks for the info. I'll look up this Doctor Rind and see what he has to say.

I notice my lowest temp seems to be the earliest part of the day, for the most part. When my temp is in the low 96's, I find it difficult to function. I feel extra sluggish and achy. I try to up my temp by walking, doing housework (yuck!), or just sitting in the sun for a short time. Sometimes it helps for a short time. What kind of issues do you notice with your low body temp?

I mentioned my low body temp to my endo but she basically ignored what I told her. I am sure this is thyroid related somehow. I'm now on a low dose of Levoxyl (started it on Thursday) because I'm somewhat Hypo, so we'll see if it helps.


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## Andros (Aug 26, 2009)

arizonamom said:


> Peaches:
> 
> Thanks for the info. I'll look up this Doctor Rind and see what he has to say.
> 
> ...


I hope the levoxyl kicks in and helps w/ your low body temp.. You will have to let us know how that goes.


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## peaches (Sep 29, 2009)

arizonamom said:


> Peaches:
> 
> Thanks for the info. I'll look up this Doctor Rind and see what he has to say.
> 
> ...


My temp is low all the time. I think the worst is at night when my thyroid dumps. That is when I have the worst attacks(anxiety and other symptoms). It didn't change when I started the thyroid medication. (5mcg Liothyronine and 50mcg Synthroid). She prescribed me 100mcgs of the Synthroid but I felt like I was going a little hyper with the 100 so I backed it off to 50mcgs. I have been taking my temp in the evenings to see if the medication is helping. If not, then I will start checking with the additions of supplements one at a time. (oil of primrose, biotin, b6 and multi-vitamin) If I don't see results then. I will start changing my diet and see if there are things there that will help. If my temp is low I feel extremely hot like I am burning up if my husband puts the thermostat above 65 degrees.


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## daisy_ysiad2002 (Aug 17, 2009)

I know a steady low temp indicates low thyroid...but if your temp is all over the place and low too its thyroid PLUS ADRENALS. If your temp is normal but kind of all over in that range then its just your adrenals. My hunch is that you need more thyroid but can't take extra cause your adrenals are fatigued. Fix your adrenals first and then your thyroid should improve.....or at least later slowly increase your thyroid med. Adrenals can take a few months to up to 2 years to heal depending how bad they are. Real Black licorice is wonderful for adrenals as long as you don't have high blood pressure.


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## arizonamom (Mar 10, 2010)

Daisy: Thanks for the info. Sorry I didn't reply sooner as I just logged in to thyroid boards after having a house full of company for the past week. I've been told, sometime last year, that my adrenals were ok - had some testing done, but I really doubt they are. I will look in to how to heal sluggish adrenals. I'll check out real black licorice but I do have some high blood pressure issues (I do take meds for it).


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