Confused about treatment

[Kelli228]

Hi, I am a 26 year old female. I was diagnosed about 2.5 years ago with multiple nodules throughout my thyroid. At that time my TSH was 5.6 . By the time I got to the endo my most recent lab work showed a TSH of 4.6 and free T4 was 0.8. After seeing an endocrinologist and doing another ultrasound on my thyroid in his office he suggested that I start on a low dose of synthroid to try and decrease and or stop the growth of the nodules. After about 6 months on 50mcg of synthroid I had lost about 7 lbs and I felt great. I have never had weight problems, I would say I had a fabulous metabolism. At this time I had never ever weighed more than 135 and I was 5'7" with not so great eating habits and little exercise besides work. I realized I probably hadn't even noticed how lethargic I had been and my weight gain was not significant enough to catch my attention at the time. I am also a nurse and I work night shift so I blamed the majority of my lethargy and sleepiness on throwing my body off by sleeping days and nights back and forth. After 6 months on synthroid my TSH was down to 1.6 and my free T4 was 0.9. This is when I felt the best. After about another 6 to 9 months I started feeling sleepy again and realized I had gained about 10 lbs. I called my doctor and requested some lab tests be ordered. This time my TSH was back up to 3.6 and free T4 was 1. I called the office thinking he would increase my synthroid but the nurse told me he did not want to mess with my dose because my T4 was within normal limits and he didn't want to throw it off. I thought oh well guess I will just live with it for now if there is nothing I can do. It has now been another 8 months and it is time for my annual appointment so I went for more lab work. This time TSH was 4.05 and free T4 still 1. I have now gained 20 lbs, I feel extremely lethargic during the day but at night I seem to get a boost of energy, I have extreme bloating after meals, depression, sensitivity to cold, tired when I wake up no matter how much sleep I get, memory problems, hair is dry and brittle, and my periods are progressively getting heavier on birth control. I feel like my doctor should be willing to increase my synthroid, even just a little, to see if it helps with my symptoms. I have done a lot of reading on the internet and see that some doctors treat the patient's symptoms and not the lab tests. I am thinking about switching doctors if he is not willing to work with me to help me start feeling better. I am just looking for general advice. Has anyone had a similar situation, or does anyone think there might be something else going on?

Also, this is what my first ultrasound showed..I thought this might be worth adding

The gland is normal in size. There are multiple hypoechoic of foci scattered within both lobes all measuring less than 5mm in size. There is a 6mm predominately cystic mass with nodularity along its wall within the midpole of the left lobe.

When I did the ultrasound in the doctors office he told me he saw what I believe he said was a "crystal" in the larger nodule and therefore he did not believe I needed to do a biopsy because he said the presence of this crystal has almost always proved that the nodule was benign.

[nasdaqphil]

I never heard about crystals in nodules but I am nearly certain your Free T4 is not high enough. You doctor appears to be treating you via TSH which is almost useless.

You didn't post the range but Im assuming the Free T4 is pretty standard and a 1.0 puts you just barely into the normal portion of the range without being out of range.

My labs range is .61 to 1.76. You probably want to be around 1.2 at least or higher - more like 1.4. Keep in mind this is a sensitive number so a small change can mean the difference between feeling well and feeling like crap. The symptoms you describe clearly indicate hypo symptoms and although Im a guy, from what I've heard from my exeperiences (my wife is hypo to and on Armour Thyroid) heavy periods and weight gain seem to be leading indicators of hypo for those women with otherwise normal cycles - it happens to my wife too when her meds are off.

You didn't say how much Synthroid you were on?

I would probably find another doctor. There's no reason to walk around feeling like crap. You're body tells the story, not some lab number.

[Kelli228]

I'm on 50 mcg of synthroid. The range for the free T4 is 0.5 to 1.5 I believe. I appreciate your advice and I am almost positive a new doctor is going to be necessary.

[nasdaqphil]

I would not be surprised if you ended up at 75 mcg or 88 mcg.

I think the doctor is being a bit slow to react because there is no small intermediate dose without pill splitting. The next full dose for you would be 75 mcg and then 88 mcg which could be a bit too much but I doubt that.

He could just give you 125's and have you split them in half so you get 62.5 mcg each day - that would be a very small increase (tiny actually) to try until you reach the full 75 mcg pill if that is his concern.

Splitting pills is a bit of a pain but its better than feeling like crap all the time - especially if that small increase makes the difference.

If that is your range, you are in the center with a 1. It's not low per your range but its not high enough to make you feel well obviously.

Sounds like you do need to see someone else who is more willing to listen to you about your symptoms.

[Andros]

Hi, I am a 26 year old female. I was diagnosed about 2.5 years ago with multiple nodules throughout my thyroid. At that time my TSH was 5.6 . By the time I got to the endo my most recent lab work showed a TSH of 4.6 and free T4 was 0.8. After seeing an endocrinologist and doing another ultrasound on my thyroid in his office he suggested that I start on a low dose of synthroid to try and decrease and or stop the growth of the nodules. After about 6 months on 50mcg of synthroid I had lost about 7 lbs and I felt great. I have never had weight problems, I would say I had a fabulous metabolism. At this time I had never ever weighed more than 135 and I was 5'7" with not so great eating habits and little exercise besides work. I realized I probably hadn't even noticed how lethargic I had been and my weight gain was not significant enough to catch my attention at the time. I am also a nurse and I work night shift so I blamed the majority of my lethargy and sleepiness on throwing my body off by sleeping days and nights back and forth. After 6 months on synthroid my TSH was down to 1.6 and my free T4 was 0.9. This is when I felt the best. After about another 6 to 9 months I started feeling sleepy again and realized I had gained about 10 lbs. I called my doctor and requested some lab tests be ordered. This time my TSH was back up to 3.6 and free T4 was 1. I called the office thinking he would increase my synthroid but the nurse told me he did not want to mess with my dose because my T4 was within normal limits and he didn't want to throw it off. I thought oh well guess I will just live with it for now if there is nothing I can do. It has now been another 8 months and it is time for my annual appointment so I went for more lab work. This time TSH was 4.05 and free T4 still 1. I have now gained 20 lbs, I feel extremely lethargic during the day but at night I seem to get a boost of energy, I have extreme bloating after meals, depression, sensitivity to cold, tired when I wake up no matter how much sleep I get, memory problems, hair is dry and brittle, and my periods are progressively getting heavier on birth control. I feel like my doctor should be willing to increase my synthroid, even just a little, to see if it helps with my symptoms. I have done a lot of reading on the internet and see that some doctors treat the patient's symptoms and not the lab tests. I am thinking about switching doctors if he is not willing to work with me to help me start feeling better. I am just looking for general advice. Has anyone had a similar situation, or does anyone think there might be something else going on?

Also, this is what my first ultrasound showed..I thought this might be worth adding

The gland is normal in size. There are multiple hypoechoic of foci scattered within both lobes all measuring less than 5mm in size. There is a 6mm predominately cystic mass with nodularity along its wall within the midpole of the left lobe.

When I did the ultrasound in the doctors office he told me he saw what I believe he said was a "crystal" in the larger nodule and therefore he did not believe I needed to do a biopsy because he said the presence of this crystal has almost always proved that the nodule was benign.

I am thinking that the foci are calcifications and that could indicate cancer. That could be what the doc means by "crystals" but I don't think this doc is up to snuff here on some stuff. Just my humble opinion.

Here is something for you to read which covers "hypoechoic", "foci", calcifications and so on.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1665239

Boy; that crystals thing threw me for a loop! I never heard of such. Welcome to the board. You are in a good place.

Okay; I believe you are horribly undermedicated but I can't be sure because I would need the range for the FT4. Different labs use different ranges.

Also, ultra-sound while a very good tool does not pick up nodules smaller than certain centimeters so I think a radio active uptake scan would be good and/or FNA (fine needle aspiration) of nodules if they are accessible.

Quote--Although sonography can supply very important and clinically useful clues about the nature of a thyroid lesion, it does not reliably differentiate benign lesions and cancer.--Unquote

Reference....................

http://www.thyroidmanager.org/Chapter6c/chapter6c_frame.htm

I certainly agree that you should seek a second opinion for more than one reason.

We are here for you; please let us know how you fare.

[Kelli228]

The Free T4 range where I get it drawn is 0.5-1.4. I was kind of worried when he said I didnt need a biopsy...but honestly relieved because I didn't really relish the thought of a needle going into my neck although I know everyone says it is not that bad. He also told me last time I went to see him that the nodule had gotten smaller which I was glad about. As far as the foci...he told me he saw no calcifications but I want to say the thing he saw in my nodule he called it a crystalloid or something like that. He showed me on the US as he looked at it but I had no clue what I was looking at. My grandmother also has nodules and they are not malignant so I was hoping that would be a good indication that mine were probably benign as well. Since I am not at the top of the free T4 range I thought he might be willing to up my synthroid to see if I felt better the first time I requested lab work, but as I said the nurse told me my free T4 was perfect and they did not want it moving. I recently had a TPOAb drawn it was 0.93 ref range less than 9...I also had a thgAb 0.01 ref range less than or equal to 4. Dont know if that says anything, I haven't looked those up yet.

[Andros]

The Free T4 range where I get it drawn is 0.5-1.4. I was kind of worried when he said I didnt need a biopsy...but honestly relieved because I didn't really relish the thought of a needle going into my neck although I know everyone says it is not that bad. He also told me last time I went to see him that the nodule had gotten smaller which I was glad about. As far as the foci...he told me he saw no calcifications but I want to say the thing he saw in my nodule he called it a crystalloid or something like that. He showed me on the US as he looked at it but I had no clue what I was looking at. My grandmother also has nodules and they are not malignant so I was hoping that would be a good indication that mine were probably benign as well. Since I am not at the top of the free T4 range I thought he might be willing to up my synthroid to see if I felt better the first time I requested lab work, but as I said the nurse told me my free T4 was perfect and they did not want it moving. I recently had a TPOAb drawn it was 0.93 ref range less than 9...I also had a thgAb 0.01 ref range less than or equal to 4. Dont know if that says anything, I haven't looked those up yet.

Thank you for the lab range. That is a bit low on the FT4; I think around 1 would suit better but clearly there is a lot going on that has to be sifted through.

I truly would press for a biopsy; better safe than sorry in my humble opinion. Sadly, there are some things that we should never assume.

Please let us know what you decide.