The THYROID Thread

[mrsklamc]

I am hypothyroid. I am looking for a new endo as my current dr. only tests tsh and t3/4. I am currently on Synthroid and still having lots of symptoms. What tests should I have done and what questions should I ask when looking for a new endo?

What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.

 

[left210]

What is it that you are wanting tested? I firmly believe I see the best endo in Indiana and she typically only tests my TSH.

I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.

 

[Pembo]

Hi again. My niece had her surgery last Friday. They took the whole thyroid and 40 lymph nodes. She is still in the hospital as she has a chyle leak. Any experience with that here?

My sister in law said she looks good, is in very little pain and is eating well. The drains are bugging her and she is very impatient with having to stay in the hospital. We are going to visit on Friday. Today the surgeon said she'll probably be in the hospital until the weekend. (that's a week). She was also told she is to be off work for 3 weeks.

Thanks for all the knowledge shared on this thread.

 

[luvmarypoppins]

Pembo - glad your niece made it through the surgery.

Looked that up but I have heard of it. (the leak)

I was in the hosp. too for a week post op. Mine was 3 surgeries and the coma so it took a while to recover for sure.

I had 2 drains too. One they pulled in the hospital with no lidocaine. Ouch and then some!

The other drain I had in for about 3 weeks because the dr. who saved my life had to rip my neck open in a few minutes etc. A real mess.

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

40 lymph nodes is alot but that is a good quadrant of them. I had around that many too.

I know one guy on thyca boards refers to it as scorch the earth aka get rid of everything that you have to etc.

Wishing your niece all the best. Keep us updated when you can.

 

[Haimia]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

 

[mrsklamc]

I am not sure what I need tested. I have been reading about TSH not being the only test to go by and that you need Free T3/T4 and other thyroid type measures. Where are you in Indiana and who is your endo as I am in Southern Indiana. I am on Synthroid and still have hypo symptoms and am wondering if I need T3 too.

I was hoping Christine would weigh in on what 'other thyroid type measures' would be. Keep in mind that because there are SO many things your thyroid does, there are many thyroid symptoms that can be caused by other things as well. But you definitely need a good endo ASAP. I see Dr.Dawn Ayers in Noblesville, but the last I knew she was not accepting new patients.

 

[Suzanne033]

My advice: Ask the surgeon to use lidocaine injection before they pull the drain. It really hurts alot less. And I have a big drain scar now on the one that stayed in a long time. Oh well. I am older and I could care less, but its visible for sure. A nice roundish mark.

I had two drains as well and when they pulled my drains before I was released from the hospital there was no pain at all. It just felt... weird (for lack of a better word).

I totally agree with your comment about the scars. My drain scars are nearly non-existant now (11 years post-surgery). However, my surgery scar hypertrophied meaning it got thick and raised. It wasn't as bad as some of the pics you see of Keloid scar but bad enough that I was VERY self-concious of it. I tried everything to get it to go away (vitamin ointments, scar patches, even a consult with a plastic surgeon). For many years (probably 5 or more) I only wore shirts that had a very high necklines. Every time I looked in the mirror that was all I saw glaring back at me. I guess over time I just started to forget about it or got used to it or maybe it was that when I did wear a lower neckline no one seemed to notice it. That probably gave me confidence to just let it out more and more.

Now I kind of see it as a badge of honor. It was something I went through and survived. I have a 13yo daughter, who was 1 1/2 at the time, that I get to see blossom into an amazing woman and if all I have to do is deal with a scar and take some medicine everyday than so be it. Bring it on!!!

BTW, all those year I was wearing high collars shirts I was hiding one of my best assets... AMAZING CLEVAGE!!!!

 

[luvmarypoppins]

Suzanne - I when you said the badge of honor comment. My dh calls it the badge of courage.

My dh just about passed out when they pulled the 2nd drain. He didnt see the first. I dont know why it affected him so much. He he is so used to this stuff He did 300 bandages for my other surgeries, sat and held my hand when I was in the coma for 2 days, watched some dr. oking needles in my eyes last year etc. I guess the drain just creeped him out.

I am going to the oncologist on Thurs. Going to tell her how tired I feel. I am sure she could care less. She is pretty unemotional and detached from all the patients. I am glad I dont have to see her alot. I am sure she will just say, well tell the endo. And of course I cant even get that office to call me back to reschedule my appt. So I will call them again this week, sigh.

Oh well I will be in Disney in 11 days I think we have 9 adrs, and we are gonna be spending time at the Flower and Garden show and of course star wars week end and I am definetly going to be spending some serious time in Storm Along Bay at the Beach Club. I so need a vacation.

 

[Pembo]

luv-Have a great trip.

My niece is still in the hospital, it's been 10 days. There was talk of another surgery to try a chyle leak repair however they decided to wait the weekend and it appears the waiting was a good thing. Her leak has slowed way down and there was talk of her going home on Tuesday. They pulled one drain on Thursday but the other was still running. Her calcium levels are good.

Thank you all for your advice and I wish you best of luck on your journeys.

 

[hcmommy]

So, I went for a follow up ultrasound a few days ago on the nodules and goiter found on my left side last year.

Another one was found on the right 2.3cm subrasternal. An FNA was done. My pathology results say thyroid follicular cells; colloid material; low risk for follicular neoplasm.

Seeing my Endo late this afternoon and i am freaked out.

If you had a substernal goiter with follicular cells present would you push for surgery?

 

[talulabelle]

Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...

I just had an ultrasound done today of my thyroid. I went to my doctor because I was feeling so bad. I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests. Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me. SO then she sent me for an ultrasound which I just had done today. I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen. There were alot of them. I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about . I am worried about what I will hear. However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...

Can anyone tell me from experience how worried I should be?

 

[Christine]

Hello all - I'm new to this thread...I actually was going to the coping board to see if there was a prayer thread that I could ask people to pray for my son who may need knee surgery and this thread was at the top of the board...

I just had an ultrasound done today of my thyroid. I went to my doctor because I was feeling so bad. I was sure I was hypothyroid as I had all the symtoms and I have been told in the past that I was boarderline and that my thyroid was slightly enlarged _ I don't know why but my doctor was never concerned enough in the past to send me for more tests. Well this time, she said my thyroid was very enlarged and sent me for blood work...It came back normal which was surprising to me. SO then she sent me for an ultrasound which I just had done today. I am a bit scared...I don't know anything about any of this - but the ultrasound too a long time - and the technician was measuring all of these black spots that I could see on the screen. There were alot of them. I didn't know if they are normal parts of the thyroid tha they measure or if it something I should be concerned about . I am worried about what I will hear. However, funny enough - I am so concerned about my son's knee and the possiblility that he may need surgery that I forgot about all of this until I saw this thread...

Can anyone tell me from experience how worried I should be?

You shouldn't be *too* worried. The black spots are cysts or nodules of some sort. Multinodular goiter is a common and, statistically, multiple nodules are less likely to be cancerous than just have one solitary lump. That's not to say that cancer isn't a possibility but it's more likely you have a nodular condition.

They ultrasound should give a pretty good description of whether the lumps are solid or liquid (or both) and then depending on that, you may get a recommendation to have a fine needle aspiration just to see what they are made of.

 

[luvmarypoppins]

hcmommy - what did your endo say at your visit?

talulabelle - I had 2 solid masses but as Christine said the multi thing is probably better. What surgery does your ds have to have? My ds had knee surgery. I think they just fixed the acl or something. He did well but has a rare condition that the ortho said he will proably need a knee replacement by the time he is 40. His cartlidge is way too soft and unusual they said. But he wa out with friends the next day and did his pt at his job. He recovered very quickly.

Happy to report that there is endo success!! They called and gave me a visit in mid July. I usually go the end of the month, but I will take it. Only bad thing is the week before that I need to get the sono is the week I am teaching VBS at my church. Afte dealing with 20 3rd graders I will be happy to rest on the table for about 20 min

My ds3 just found out that he was not accepted into his Number 1 choice nursing school. Oh well. He wa accepted into about 4 or 5 others. He has it narrowed down to 2. One an RN and one a BSN. The BSN he needs to board and it will be like 99k. The RN program is cheap and he could transfer to a BSN bridge program at another college. Decisions, decisions.
So glad I am not on 200 synthroid because if I heard the 99k price with that I would have really freaked.

 

[Haimia]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

I am reposting this as I got no response. Any takers?

 

[angwill]

"I got my ultrasound and bloodwork reports from hospital. Bloodwork is all normal except for T3 free was 1.88 (normal is 2.2 - 4.0). So, I am slightly hypo?

Ultrasound showed multi-nodular right lobe, left lobe has nodule 2.5 cm with soft tissue and fluid with internal color flow and isthmus has nodule 1.7 cm with soft tissue and fluid. Not great from what I have seen on internet but also not definite of anything. I do not like waiting for another three weeks!

Endo was slightly hesitant to consider needle biopsy as I am on blood thinners; however, other doctor said they can help with the meds to make biopsy happen. I have my DD#2 wedding in early June and have a trip to Germany planned in July. What are my chances!!! Just looking for some ideas and guidance!

T4 was 0.99 (normal 0.89 - 1.76); TSH was 3.151 (normal 0.400 - 4.200); thyroid peroxidase 0.3 (normal 0.0 - 9.0)

As far as the nodules go, the right contained nodules (subcentimeter) and the left contained only one as well as the isthmus contained only one or at least that is what report mentioned. Perhaps more subcentimeter nodules but not listed." from Haimia earlier in this thread!

Okay, so I saw the endo yesterday. As he is looking at the bloodwork, in particular the FT4, he comments "hmmm, that's interesting" - SO what the heck does that mean? He is rerunning TSH and FT4 to double check the results!!

I also have a FNA scheduled for the 10th with endo follow up on the 16th. He wanted to do follow-up in six weeks, but I said "that long" then suggested 4 weeks and I said "that long" so we got it at just two weeks. Won that one!

All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo. T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo. Did your endo redo the tests? How did they come back the second time?

I never had nodules so I can't help there but I do know of someone who had so many nodules that the surgeon said it didn't look good for her and felt it was cancerous but the tests came back that it wasn't so don't give up hope.

As for your plans never put your life on hold. Keep making plans and living you can not put it on hold because of a stupid thyroid, right? You do that and you are bound to become depressed.

 

[Christine]

All I can say for this is that the T3 at 1.88 is hyper it is opposite of how you would think and the lower numbers are hyper and higher are hypo. T4 and T3 are in range closer to hyper which is not bad if you feel good. It is the TSH that is weird when compared to the other numbers because it is normal but closer to hypo. Did your endo redo the tests? How did they come back the second time?

Actually the T3 and T4 tests are not opposite of what you would think. Only the TSH is that way. TSH is low = HYPER. TSH is high = HYPO. For T3 and T4 measurements, those are the direct measurements of the thyroid hormones. If they are low, they you are hypo.

 

[angwill]

Actually the T3 and T4 tests are not opposite of what you would think. Only the TSH is that way. TSH is low = HYPER. TSH is high = HYPO. For T3 and T4 measurements, those are the direct measurements of the thyroid hormones. If they are low, they you are hypo.

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. I will have to talk to her about it when I see her in a few months.

 

[talulabelle]

ok - so my Drs office just called and said the ultrasound was "benign". I asked "what was benign?" thinking they meant the nodules or some mass. And the dumb secretary said "the ultrasound" uh-huh. I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large? I hate doctors offices.

 

[mrsklamc]

Funny my doctor must not know how to read the tests then as I just got mine done and she explained it opposite of what you are saying. I will have to talk to her about it when I see her in a few months.

I know sometimes I know exactly what I mean to say but it comes out the exact opposite. But yes, the lower your TSH the more hyper you are.

 

[mrsklamc]

ok - so my Drs office just called and said the ultrasound was "benign". I asked "what was benign?" thinking they meant the nodules or some mass. And the dumb secretary said "the ultrasound" uh-huh. I mean - it's good to hear there was nothing wrong - but what do they mean by that - and why is my thyroid so large? I hate doctors offices.

There are any number of thyroid disorders, unfortunately, but benign just means 'not cancerous.' So yay- although it can be frustrating figuring out what ELSE is going on. Although many people have nodules that don't bother them at all.