# New results



## shellebean (Oct 12, 2011)

Just to refresh, I had FNA diagnos Hashis back in early November and are monitoring small complex cysts and solid nodules. Felt very crappy, symptoms kept weighing on me. I still have a thyroid; a speckled ugly one that doesn't work so well, but have one.
Endo put me on 112 synthroid. I thought it was too high (along with the help from those great people on this board) so I split them.

Previously, my TSH was anywhere from 2.51 (0.4-4.0) to 3.73. Not horribly high, but I felt it. 
In December, my FT4 was 0.636 (0.8-1.9) They didn't do a FT3 then, but previously it was 2.7 (2.3-4.2).

Today Endo called me and said he was still waiting for my FT3 (only running because I insisted on it) but he gave me the following:
TSH 0.646 (0.4-4.0)
FT4 0.960 (0.8-1.9)
So tell me if I'm wrong, these were the first labs after starting synthroid, but it seems that I'm responding well to it, correct? TSH down considerably and FT4 has come up a bit. Can you imagine if I were taking the 112 as he prescribed?!?!!!
So, now he wants little change. He wants to get me on the closest correct dosage which would be 50 synthroid. I'm not excited about going down a bit from 56, but I understand that splitting them is not accurate. He does not want to go up. I am curious what the FT3 looks like, not really sure that would affect anything though unless it's crazy for some reason.

What you all think? I am waiting for an appt for another ultrasound in order to check for any nodule changes. That is still to be determined. Overall, except for this horrible cold/flu/virus whatever I'm just kicking, I feel better than I did before the holidays.


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## Lovlkn (Dec 20, 2009)

shellebean said:


> Just to refresh, I had FNA diagnos Hashis back in early November and are monitoring small complex cysts and solid nodules. Felt very crappy, symptoms kept weighing on me. I still have a thyroid; a speckled ugly one that doesn't work so well, but have one.
> Endo put me on 112 synthroid. I thought it was too high (along with the help from those great people on this board) so I split them.
> 
> Previously, my TSH was anywhere from 2.51 (0.4-4.0) to 3.73. Not horribly high, but I felt it.
> ...


*How long have you been on the 1/2of 112mcg?*

While splitting a 112 mcg isn't an exact science if you split the pill and take the 2 halves within 2 days it's close enough. I alternated doses for awhile and the minute differences will not be felt day to day.

Your FT-4 is still very low and at this point you need to dose from your FT-4 and FT=-3 and not worry about your TSH. You likely have antibodies that are suppressing your TSH because your FT-4 is still very low.

If it were me I would continue splitting pills and re-test in another 6 weeks.

I have always made it a practice when tinkering with doses to have as many pills as I can on hand in case the doctor tries dosing on TSH and cuts my dose. It also gives you time to shop for a doctor if yours decides not to work with you to reach proper dosing. If you have refills on your existing pills get it filled and then post what your FT-3 levels are with ranges when you get them. It sounds paranoid until you find yourself without enough meds because a doctor does not know how to dose properly.


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## northernlite (Oct 28, 2010)

I agree with Lovlkn completely. I split 125's to get 62.5 mcg for quite a while. I split the pill and took one half and then left the other half on the top of my pill container for the next day. So over the course of two days my dosage was very accurate. It doesn't matter with T4 if you are a hair low one day and a hair high the next since it has such a long half life.

Although your dose is unusal, if you feel well and your numbers are acceptable to the dr and you, then why change?? There is a lot of discussion recently about saving money on many medications by splitting larger doses. T4 is one of the medications that this works beautifully with.


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## Andros (Aug 26, 2009)

shellebean said:


> Just to refresh, I had FNA diagnos Hashis back in early November and are monitoring small complex cysts and solid nodules. Felt very crappy, symptoms kept weighing on me. I still have a thyroid; a speckled ugly one that doesn't work so well, but have one.
> Endo put me on 112 synthroid. I thought it was too high (along with the help from those great people on this board) so I split them.
> 
> Previously, my TSH was anywhere from 2.51 (0.4-4.0) to 3.73. Not horribly high, but I felt it.
> ...


I would not do a thing until you get the FREE T3 result. He shouldn't either. That part raises an eyebrow.

As you know, FREE T3 is your active hormone and will tell all.

Let me ask you; "How do you feel?" That is very very important criteria.

Splitting the tablets should be accurate if you have a pill splitter. The ingredients to make the tablet are "well" mixed, I can assure you.


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## shellebean (Oct 12, 2011)

THANKS for all your input. I started taking synthroid when I got the 112 prescription on December 16. I took the full dose only 2 days, then started splitting them. So from them to time of labs, it was about 7 weeks and about 4 days to get those results. I was wondering why he wouldn't wait to see the FT3 also, but he wasn't even going to do it. I had to tell him I really wanted it. I had a refill for the 112 script so I had refilled it before going in for my labs (agree, wanted it on hand just in case he messed with it too much). After seeing my TSH and FT4, he changed it to a prescription for 50mcg. I like having the others on hand, too, but just started taking his "real dose" of 50 this weekend. He isn't really too helpful. I think anything the Endo is doing, my PC would be doing too and he really listens to me. He said he was glad that I do research on line and said it would be helpful for both of us if I am more informed.

I should get the FT3 results in the next couple days. I really don't know what to expect since he didn't take that one last time to compare. My PC said he would order my ultrasound since the Endo who plans to do it is out of network. My PC can have me go to the same place as before (I know, good for consistency) and is in network. Endo may get fired if I get stable and can have PC help me going forward.


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## shellebean (Oct 12, 2011)

oh, and by the way. I really feel pretty darn good. Still having night sweats like crazy, but energy level is wayyy better. I can also focus at work which was a problem prior to and during the holidays. I dont think "I'm there yet", but going the right direction. What would be a goal for me for my FT4?? I agree, TSH isn't going to help too much going forward.


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## Andros (Aug 26, 2009)

shellebean said:


> THANKS for all your input. I started taking synthroid when I got the 112 prescription on December 16. I took the full dose only 2 days, then started splitting them. So from them to time of labs, it was about 7 weeks and about 4 days to get those results. I was wondering why he wouldn't wait to see the FT3 also, but he wasn't even going to do it. I had to tell him I really wanted it. I had a refill for the 112 script so I had refilled it before going in for my labs (agree, wanted it on hand just in case he messed with it too much). After seeing my TSH and FT4, he changed it to a prescription for 50mcg. I like having the others on hand, too, but just started taking his "real dose" of 50 this weekend. He isn't really too helpful. I think anything the Endo is doing, my PC would be doing too and he really listens to me. He said he was glad that I do research on line and said it would be helpful for both of us if I am more informed.
> 
> I should get the FT3 results in the next couple days. I really don't know what to expect since he didn't take that one last time to compare. My PC said he would order my ultrasound since the Endo who plans to do it is out of network. My PC can have me go to the same place as before (I know, good for consistency) and is in network. Endo may get fired if I get stable and can have PC help me going forward.


Sounds like your PC is w/ the program and more tuned into you and your needs.


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## shellebean (Oct 12, 2011)

I do like my PC. When I say I went to the Endo, I met the Endo for about 5 minutes on my first visit. Most of the time was "the asst. Blake" asking me questions. He admitted on that visit that he doesn't know a lot about thyroid and is learning. This last visit for labs was only with Blake. It work to my advantage to push him around a bit to get the FT3 lab request. He folded...wimpy. Anyway, he also called me with my results, saying the TSH was right where we wanted it. I know he has no clue what to do when he gets back that FT3 result.

I don't quite understand the thyroid speak about antibodies binding and blocking, suppressing my TSH. Does it mean it is kind of camouflaging the numbers? I did have fairly high antibodies with the one TPO test I had.


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## shellebean (Oct 12, 2011)

So I asked my Endo's office for the actual results from my most recent labs and also the prior which was in December. I picked them up yesterday. Obviously, they didn't have the FT3 back (Endo said they weren't in yet when he called me with my TSH and FT4 results) because they weren't listed.

In December they did tell me that my Cholesterol was high and HDLC was high (LDL was in range). BUT, they did NOT tell me that they also ran an HS CRP test. It showed as "High" on the results. Not knowing even what this test was, of course I did some research. More generally, a CRP test is done to measure Cardiovascular Risk. I guess the "HS CRP" is even more specific. The range is 0-3. A 1 is low risk, around 2 is avereage risk and 3 or more is high risk. I'm at 14.308! WTH? Wouldn't they call me about this?

Also from research I've read that this test also measures inflammation in the body. Hence, my inflammed thyroid?? My antibodies also went up in last labs and they didn't mention that either (maybe thought no need to since you either have them or not). BUT, am I crazy to think they should have informed me about this? They ran the test for a reason. Also, if my thyroid is so inflammed that it is causing such a high lab result for cardiovascular disease/heart attacks, wouldn't we be discussing that, too?? Maybe I'm assuming the relationship, but HELLLOOO, why do I have to be doing all the footwork on my health??

On a bright point, my PC has me scheduled for a second ultrasound tomorrow to monitor any change. I asked him to schedule vs this Endo because he's out of network for me...and now, not helping me a whole lot!
Am I overreacting since I really don't know much about this test/result??


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## lainey (Aug 26, 2010)

> Cholesterol was high and HDLC was high (LDL was in range)


Without seeing the exact numbers, the HDL is the "good" cholesterol, and it is considered protective for a woman to have a lot of it. If the LDL is normal, and that is what is raising your total cholesterol, you shouldn't worry about those results too much.

On c-reactive protein:

http://www.nlm.nih.gov/medlineplus/ency/article/003356.htm

With rising antibodies, I would be inclined to lean more toward general inflammation as the cause--although inflammation is connected to heart disease, the risk factor here is for developing it--having it is manifested in blocked arteries, changes in heart rhythm and blood pressure etc, that would be measured by tests such as a stress test, EKG, echocardiogram, etc. It takes decades for most people to develop heart disease, while their risk factors are often known well in advance. It helps a patient motivate to diet and life style changes.....

My doctor just ran one of these recently, along with some sophisticated cholesterol typing and my insurance is refusing to pay for any of it because they consider it "non diagnostic". Not that I agree with that, but just to say that there is some controversy about using the test to diagnose heart disease per se.

In people with thyroid disease, many of these values return to normal with treatment.

If you have enough, I agree with the others about sticking with splitting the pills.

Andros is right--if your PC is more willing to work with you, they can treat you. It doesn't have to be an endo. What matters is that you have a good working relationship with your doctor.


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## shellebean (Oct 12, 2011)

Lab Results 
Cholesterol (H) 214 MG/DL (70-180)
HDLC (H) 68.29 MG/DL (29-67)
LDL 122 MG/DL (0-130)
HS CRP (H) 14.308 (0-3.0)
TPO (H) 864 IU/ml
Folic Acid (H) 20.1 NG/ML (3-17)
Everything else was within range other than a low Red Cell Dist Width of 11% (11.5-14.5)

It does seem that the HS CRP figure is a risk factor for getting it as you mentioned, Lainey. But just kinda scary. If the general issue is inflammation, what else can be done to lower these pesky antibodies and ANGRY thyroid??


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## lainey (Aug 26, 2010)

With heart disease you really have to look at the big picture--it is the sum of the parts, time and genetics. Almost all of the statistics they quote and recommendations they make apply to about 50% of the population with known risk factors--about 50% of the time, when a person has an event, there are no risk factors so, what is a person to do? After all, doesn't crossing the street have a risk?

Know your numbers, monitor your numbers. Take in hand all of the modifiable risk factors--most of those are lifestyle and diet. Discuss your overall risk with your doctor, and if you are high risk, get baseline testing.

It's likely the thyroid antibodies are behind the inflammation, and unfortunately there really is not a lot to be done about them. Remember that this is only one piece in a much larger puzzle and the short term risk is not great--as it would be if you were a smoker or diabetic. Keep in mind too, when they say "short term risk", they are talking 10 year intervals, so as you can see it is not so much an immediate issue as long term one.

Focus on bringing your levels into range, continuing a healthy diet and introducing some exercise into your healing routine. You may be surprised at the effect these can have.


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## Andros (Aug 26, 2009)

shellebean said:


> So I asked my Endo's office for the actual results from my most recent labs and also the prior which was in December. I picked them up yesterday. Obviously, they didn't have the FT3 back (Endo said they weren't in yet when he called me with my TSH and FT4 results) because they weren't listed.
> 
> In December they did tell me that my Cholesterol was high and HDLC was high (LDL was in range). BUT, they did NOT tell me that they also ran an HS CRP test. It showed as "High" on the results. Not knowing even what this test was, of course I did some research. More generally, a CRP test is done to measure Cardiovascular Risk. I guess the "HS CRP" is even more specific. The range is 0-3. A 1 is low risk, around 2 is avereage risk and 3 or more is high risk. I'm at 14.308! WTH? Wouldn't they call me about this?
> 
> ...


Lainey has provided the best information possible regarding your CRP. Once things are under control thyroid wise and otherwise, that should go down considerably.

I personally like to take CoQ10 every day. This is great stuff for the heart muscle and inflamatory response.

Yeah......................I do agree. You are doing all the leg-work on your own behalf and it seems that those who should be caring about the issues we are discussing, do not.

You will have to address these issues to the doctor yourself. And then you can tell the doctor that you will be sending him/her a bill. (Just kidding, of course; sometimes I just can't help myself.) But I'll bet you feel the same sometimes?

Good luck w/ the ultra-sound and please let us know whenever you can.


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## shellebean (Oct 12, 2011)

Thank you both, I'm sinking it all in. I know I'm going in the right direction, just frustrating when they only want to discuss the TSH and FT4. Why run all these tests if they aren't going to counsel you on them...
We'll see how ultrasound tomorrow looks. Hopefully no or little changes. Who knows!


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## Andros (Aug 26, 2009)

shellebean said:


> Thank you both, I'm sinking it all in. I know I'm going in the right direction, just frustrating when they only want to discuss the TSH and FT4. Why run all these tests if they aren't going to counsel you on them...
> We'll see how ultrasound tomorrow looks. Hopefully no or little changes. Who knows!


I for one do not like the idea that you do have solid nodules. So, we will all be anxious to know the outcome.


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## shellebean (Oct 12, 2011)

Agree. A little "wiggie" on Lainey's link-

"A positive test means you have inflammation in the body. This may be due to a variety of different conditions, including:

Cancer
Connective tissue disease
Heart attack
Infection
Inflammatory bowel disease (IBD)
Lupus
Pneumococcal pneumonia
Rheumatoid arthritis
Rheumatic fever
Tuberculosis"

Don't like seeing that "C" word at the top of the list. I'm by no means one who jumps to conclusions, so I will just keep it all as a well-informed reference! THANKS for your opinions and knowledge!


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## shellebean (Oct 12, 2011)

Ok, got ultrasound results in from last week. I'll try to summarize and compare to previous ultrasound 4 1/2 months ago.

General Appearance: Abnormal.
Complicated Cyst in mid to lower right lobe is similar to minimally smaller (aspirated by FNA in November).
Complicated Cyst in the inferior loft lobe is slightly larger. now has a lobulation extending inferiorly. 
Two small nodules noted in the region of the isthmus appear to be above the isthmus. These may represent small lymph nodes or small foci of accessory thyroid tissue.

Rt Lobe: Heterogeneous. Increased Vascularity. Size enlarged 5.1 x 1.7 x 1.2 Vol. 5.4ml (This is similar to previous ultrasound, actually volume was 6.6ml before)
Rt Nodule: Lobulated (was oval). Well defined margins, Complicated Cyst w/ normal vascularity 0.92 x 0.43 x 0.69cm Vol. 0.14ml (This was the 1cm cyst that was aspirated in November with inconclusive FNA.) It was sucked out, not back.

Left Lobe: Heterogeneous. Increased vascularity. Size enlarged 5.0 x 1.5 x 1.2 Vol. 4.7ml (the volume was 6.1ml, so it is smaller, but shape has changed a bit; slightly longer and skinnier).
Left Nodule: Lobulated (was oval). Well defined margins. Complicated cyst w/ normal vascularity 1.07 x 0.39 x 0.57cm. Vol. 0.12 ml (was 0.09ml).

2 small nodules superior to the isthmus measure 0.53 and 0.48 cm. Isthmus height 0.3cm (was 0.4cm).

Not major changes, I am surprised that the cyst that was aspirated came back almost completely so soon. Also, the left cyst is slightly larger. It has only been 4 months, is this change considered "slow growing"?

Anything stand out to any of you that understand this better than I do???
I still haven't gotten a reply from the Endo about the HIGH results from the HS CRP test.


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## joplin1975 (Jul 21, 2011)

Your nodules just loved you so much they wanted to come back. 

I don't know the answer to your question, but I would be encouraged the the solid nodules on the isthmus do seem to have changed much.


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## shellebean (Oct 12, 2011)

Well, the Imaging location that did my ultrasound sent the results to my PC and that office just called me (not knowing I had a copy of the results already faxed) asking if I had an ENT or if I wanted them to refer one....hummm. 
I had originally seen an ENT (recommended I after the very first ultrasound), but he only wanted to do what the first Endo wanted to do. That was nothing at the time. So, I said I'd like to have them refer me to one. I don't know if they are seeing something new on this ultrasound that is of concern..., I question the statements about the "slightly larger complicated cyst now has lobulation extending inferiorly". Still not so sure about those "nodules, lymph nodes or foci of accessory thyroid tissue" above my isthmus, either. 
I think I read too much into things sometimes...


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## Octavia (Aug 1, 2011)

Well, maybe they think it's time to do "something" instead of "nothing" this time. It will be good that you're seeing a second ENT, so you can get a feel for which one you like better.

Maybe the fact that your cyst re-filled in a short time is telling them that some other treatment/solution is needed.


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## shellebean (Oct 12, 2011)

Well just got call that my PC scheduled an appointment for me with an ENT. It is a different one that I went to initially. The appt is next Thursday, 3/1. When I asked what was the cause for the referral (since nobody called to explain the results) they said that there had been changes from ultrasound only 4 months ago, that that was a short period for there to be such changes. I'm imagining the new ENT may want to do another FNA. (maybe do both since one is 1.1 cm and other is 0.92cm. I know it's opening up the chance of an inconclusive result again, but I can't just sit and wait for them to keep changing, doing nothing, right??
I think Thursday is just a consult. Don't think he'd do anything that day, do you? I guess I could call and ask.


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## lainey (Aug 26, 2010)

Make sure they have a copy of all of your records, including the previous ultrasound from 4 months ago. Once they have that, they should be able to tell you if the doc will want to do an FNA on the spot or a consult.

Let us know what they say.


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## joplin1975 (Jul 21, 2011)

Because my nodules could be palpitated easily, my surgeon did my FNA on the first visit/consult. Had it not been easy to feel, he would have done it using an ultrasound and that would have been at a later date.


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## Andros (Aug 26, 2009)

shellebean said:


> Well just got call that my PC scheduled an appointment for me with an ENT. It is a different one that I went to initially. The appt is next Thursday, 3/1. When I asked what was the cause for the referral (since nobody called to explain the results) they said that there had been changes from ultrasound only 4 months ago, that that was a short period for there to be such changes. I'm imagining the new ENT may want to do another FNA. (maybe do both since one is 1.1 cm and other is 0.92cm. I know it's opening up the chance of an inconclusive result again, but I can't just sit and wait for them to keep changing, doing nothing, right??
> I think Thursday is just a consult. Don't think he'd do anything that day, do you? I guess I could call and ask.


Very excellent! You know we are anxious to hear from you about all of this.


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## shellebean (Oct 12, 2011)

Good call, Lainey. I checked with the new ENT office to see what I should take with me. I had already picked up the report and films from the most recent U/S, but asked if they wanted both and she said that would be great; they would really like to see everything that I could bring. I will request a copy of the report/films from the first U/S, too. 
I asked if it would be just a consult and she said yes, that way they could review the info I take to them and determine what to do next. Part of me hopes they would do like Joplin's surgeon and just do FNA that day, but sounds doubtful. Ok, patience...


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## lainey (Aug 26, 2010)

Sometimes, if you get them the info beforehand, they can review it.

They will be able to tell, based on the images from both, what they need to do when you get there.

Your PC's office can help you there, by pushing it a little and sending all the info and asking for the review.

Each doc does things a little differently, but it doesn't hurt to ask. After all, your time is valuable and it could end up being two visits, two co-pays, etc, etc.


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## shellebean (Oct 12, 2011)

I'm on it. That's on my "to do" list for Monday. (I'm a HUGE "list" person). I'm off work Monday, so I can pick up films and take them to the new ENT office. If they have time to review before my appt, bonus! At least they will have what they need ahead of time.
Thanks for the ideas, it all makes perfect sense, but for whatever reason...when you're right in the middle of it all, you (I) don't notice things nor see the obvious sometimes!


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## lainey (Aug 26, 2010)

Good for you 

Now what we wish for is that is that the doc will say that it is not really anything serious for the time being.


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