The THYROID Thread

[mrsklamc]

I was told that i was the youngest in the World to have had it.

Oh by no means. Infants have it.

 

[luvmarypoppins]

Okay, so endo called today about my upcoming biopsy. It's a fine needle biopsy with no numbing. NO NUMBING! I was all like whaaaaa? Seriously? How bad does this hurt? Biopsy guy said that a blood draw hurts worse? Really?

I didnt think it was too bad, uncomfortable but not all that bad. I say this as I gripped the chair, white knuckle grip, not due to fear, but trying to stay really still so they can get a good stick. Oh and I had to have it done at least 3 times in the one session I think.

The first time they didnt get enough cells. Then I had another biopsy. That one he shook up my neck as they call it, trying to get more cells into the needle.

I ended up wit a third biopsy because they knew mine was something rare. I had to have a core biopsy and that is like a caulk gun going into the side of your neck. My ent calls it making a pass. I dont know if that is really the correct medical term to get a biopsy sample. He said he didnt like his lst pass so I got the wonderful caulk gun again and a nice dinner at Outback from dh! That one I did have to put an ice pack on my neck and take tylenol. I guess you could do that with the regular fna if it really bothered you.

So my lst two fnas were inconclusive.

Honestly the worst needles I have had so far were the ones they were sticking in my eye area and tear duct area to see how the radiation ruined my tear duct canals.

Have your dh get you a nice dinner after that! You deserve it. My dh usually goes with me for stuff like that. He feels so sorry for me and says - honey let me take you out to dinner etc.

Seriously LoriAnn, wishing you all the best. Probably the other things you have been through were a lot worse and you have really been a trooper through all of this so far. Hang in there sweetie!

 

[NeedProfessionalHelp]

Thanks for starting this. Subscribing

 

[AmazingGrace]

I didnt think it was too bad, uncomfortable but not all that bad. I say this as I gripped the chair, white knuckle grip, not due to fear, but trying to stay really still so they can get a good stick. Oh and I had to have it done at least 3 times in the one session I think.

The first time they didnt get enough cells. Then I had another biopsy. That one he shook up my neck as they call it, trying to get more cells into the needle.

I ended up wit a third biopsy because they knew mine was something rare. I had to have a core biopsy and that is like a caulk gun going into the side of your neck. My ent calls it making a pass. I dont know if that is really the correct medical term to get a biopsy sample. He said he didnt like his lst pass so I got the wonderful caulk gun again and a nice dinner at Outback from dh! That one I did have to put an ice pack on my neck and take tylenol. I guess you could do that with the regular fna if it really bothered you.

So my lst two fnas were inconclusive.

Honestly the worst needles I have had so far were the ones they were sticking in my eye area and tear duct area to see how the radiation ruined my tear duct canals.

Have your dh get you a nice dinner after that! You deserve it. My dh usually goes with me for stuff like that. He feels so sorry for me and says - honey let me take you out to dinner etc.

Seriously LoriAnn, wishing you all the best. Probably the other things you have been through were a lot worse and you have really been a trooper through all of this so far. Hang in there sweetie!

Will I be able to go work my kids club shift that night?

 

[mrsklamc]

Absolutely. I went straight to work after mine.

 

[DisneyNurse19]

Oh by no means. Infants have it.

I am sure they do but back when i was 5 i was the youngest.

 

[mrsklamc]

Nope. You may have been the youngest your doctor had heard of.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1813099/?page=1

 

[bhagaman]

Okay update....

CT Scan came back normal, nothing extremely irregular. But I have a small nodule in my right lung. Doc says it's more than likely scar tissue, but I'm still a little concerned because my last X-ray did not show a nodule in my lung. My doc is out of the office today, so I left her a message with a bunch of questions.

She said she wasn't concerned, we're going to hold off for a while. I'll get an ultrasound in 3 months and then another CT scan in 6 to look at the nodule.

 

[branv]

Hi everyone! Just wanted to check in and see how everyone is doing. I hate to see that there are new people, but glad you found a helpful place to land. Hoping all of you are getting excellent care, and have the support you need. Goodness knows the emotional side of it is overwhelming at times.

Regarding the PP who is getting a biopsy w/o numbing, I did have it with both of mine. But I was also told that really the numbing is only effective mostly at the surface -- in other words, they really do it so you won't feel the shots as they enter the skin, but the irony is that you get a shot to avoid feeling the shots! I know that even with numbing I could feel a bit of the needle inside my neck, but it wasn't what I would call painful, more of a mild pinching, mostly pressure feeling. I think the hard part is mental, not physical. Getting my blood drawn is harder.

On my end, I hit 24 weeks today of my pregnancy and little man is starting to thump away. I am so grateful my thyroid hasn't appeared to affect anything so far. My labs still look normal, and a recent three month follow up scan showed that the nodules I have haven't really grown much. There may be a miniscule new one, but it and any growth of the others are so small that they can't be sure it's not just a difference in the radiology equipment or the technician doing it. Plus my perinatologist and ENT warned that pregnant women tend to see an increase of thyroid issues. Despite my labs being in the middle normal range even w/o meds, they did put me on a preventative very low dose of thyroid meds b/c "at this dose, it can't hurt, only help". In part b/c of the pregnancy, and also b/c they said some people even see a reduction in nodule size or growth on meds. So...fingers crossed!

For anyone here now or coming in the future, I've learned some more about that Veracyte Afirma test that many doctors are beginning to use to avoid the diagnostic thyroidectomy. UHC just announced a partnership to provide coverage for this test. This is incredibly important as the test is almost $5000 for each sample! And if they are covering, others will likely follow. Mine was sent in w/o anyone really understanding this, so I'm fighting right now to get insurance to pay for mine (I have UHC, but it was done about 3 mos before they announced coverage...oy). Too many docs still don't know about this test, so if you get a ruling of indeterminate or suspicious, don't let them send you straight for the thyroidectomy. Ask your doctor about this test (and, of course, get insurance approval first!).

Best wishes to all of you.

 

[DisneyNurse19]

Nope. You may have been the youngest your doctor had heard of.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1813099/?page=1

Thank You

 

[bellanotte10]

Arg. I went to go have a test done unrelated but kinda related to my thyroid. Apparently not only do I have a cyst on my thyroid, but it's enlarged very slightly. Enough to make a note. I knew about the cyst but he didnt tell me it was slightly enlarged. I heard the people running the test talk about it. Oh well. I guess since he's not concerned its nbd cuz it's only slightly enlarged?

 

[luvmarypoppins]

bellanote - at least they know about it and are keeping an eye on it, so that is good.

Well I called the rad. onc. office. They just had a computer generated letter sent to me wth my original appt. but she said ny new appt. is in the computer system so that is good. I didnt want any more hassles.

And the wheelchair co. who we rent from at Disney called and asked dh where we were?. Seems they got the dates mixed up. I checked my confirmation and its the right dates. Never had that happen before. Of course this happened days ago and dh just tells me today

There are going to be 5 of us from the breast cancer thread on the cb there at Disney next week too, so hopefully we will be having a few meet ups. Should be fun. They are a great bunch of ladies.

Its so cold here. Like 58 was the high, Rainy etc. We have the heat on and I think I am going to sleep with my winter pj's. Where is summer?? It was suppose to be the opening of the pool where ds lifeguards, Of course that didnt happen.

Saw rain for next week in Florida too. Oh well. At least it will be warmer there. I need to look for my disney poncho..

 

[Devilsangel7681]

Hi everyone, just stumbled across this board.

I have hypothyroidism.

I was born without a thyroid. Or so the doctors thought..when I turned 15 puberty hit and All of the sudden my throat swelled and goiters could be seen on the outside! Something was wrong. Also went through depression, emotional teenage stuff all at once. Not good.

Doctors did the iodine radiology tests and found the goiters. Did an ultrasound and discovered they are benign. They upped my dosage on synthroid and I have been fine ever since. I'm 27.

Your thyroid has a lot of say when it comes to your hormones as we all know, I'm just glad my parents took me to a great doctor early on and everything was ok.

I have some questions though, maybe someone can help...

sometimes the goiters make my throat feel slightly closed? Not like I can't breathe, but more like I can feel them there. Anyone else with goiters feel like this?

Also, I don't plan on ever having kids. I am wondering if there will ever be a point that my hormones will change the rest of my life and that I need to keep an eye on my symptoms...menopause I suppose?

Thanks for the help

 

[AmazingGrace]

So I had my biopsy today. It wasn't pleasant, but I got through it. The dr wasn't going to go ahead at first because bamc biopsies nodules that are 1.5 cm and mine was 1.2. He looked at the ultrasound, talked to me about symptoms and decided to go through with it. The first two passes or so hurt going in, but were manageable. The third or fourth pass nearly knocked me off the table. And I kept reflexively swallowing. He said that the ultrasound showed that it was a solid mass, some calcification, surrounded by a ring of fluid. So now I'm just sitting here, resting. My neck and throat ache a bit and there's junk running down the back of my throat that tastes like blood. It's not, but it's really unpleasant.

 

[Piper]

This may have been asked before. I searched and didn't find it.

I take Levothyroxine sodium 50mcg and the pharmacist said I had to take it first thing in the morning and wait at least an hour before I ate or drank anything and 2 hours before dairy. This means no coffee for 2 hours after I wake up (I drink milk in it.) It is a PITA. Although I drink decaf, I still want something to drink other than water! And I have to wait at least an hour before I can eat breakfast--2 if I'm having anything with butter or cream cheese.

Has anyone else been told this? If so, how do you handle it?

 

[traceypi]

Hi Everyone,

I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves. Seems it won't be coming back to 2014/15. What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this. Apparently doctors were notified back in February about this potential shortage.

Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do. I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg). I've never had any issues, thank God. Now I'm worried. Anyone else in the same boat?

 

[Christine]

Yes, I am in the same boat! Just found out last week.

So what is happening is that whatever container the drug company is now using for the large quantities of Levoxyl, well, it smells. There is an odor when opening the bottle. It's not from the medication. So they have recalled all of it and I guess they have to work on getting new containers and getting the production back up. Hard to believe it will take until next year.

The bad part for me is that the reason I take Levoxyl is because I am allergic to a very common filler: povidone. Levoxyl is one of the few thyroid medications that does not have it. The pharmacy attempted to give me Synthroid over the weekend but I had to explain the povidone issue. They researched it for me and we determined that the new medication, Tirosint, does not have it. So they go my doctor to change over to that. I just hope I don't have any adjustment issues to the new brand. Geez...

Hi Everyone,

I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves. Seems it won't be coming back to 2014/15. What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this. Apparently doctors were notified back in February about this potential shortage.

Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do. I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg). I've never had any issues, thank God. Now I'm worried. Anyone else in the same boat?

 

[Christine]

Well, here's the deal:

Any kind of "food", even just milk, will interfere with your thyroid absorption. This is why they tell you to take it on an empty stomach away from anything. This will give you maximum absorption at the lowest dose possible. As you are finding out, this doesn't always work for everyone depending on your schedule. So it could be that you have to take your medication closer to food intake. If this is the case, then, for example, 125 mg of thyroid medication may not get you to your TSH well and you might have to always be on a dose of 137 mg. The deal is to get into a routine and stick with it and keep adjusting your medication dosage until you hit the sweet spot with your TSH. My doctor told me this long ago. For some people, it's just impossible to go two hours.

I am "lucky" in that I get up at 4AM everyday and I don't eat until much later at work. I take my medication at around 4:20 and then I don't have my first cup of tea until 6:30 when I arrive at work and get settled. I eat at 7:30. You can bet, though, if my job required me to eat earlier, I would do it. I'd take the medication and eat when I could. If it meant I had to get a higher dose of thyroid meds, so be it.

This may have been asked before. I searched and didn't find it.

I take Levothyroxine sodium 50mcg and the pharmacist said I had to take it first thing in the morning and wait at least an hour before I ate or drank anything and 2 hours before dairy. This means no coffee for 2 hours after I wake up (I drink milk in it.) It is a PITA. Although I drink decaf, I still want something to drink other than water! And I have to wait at least an hour before I can eat breakfast--2 if I'm having anything with butter or cream cheese.

Has anyone else been told this? If so, how do you handle it?

 

[traceypi]

Christine,

Thanks for the reply. I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.

Also, in addition to food, one thing I found that also affected my absorption was my IUD. Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.

 

[lizbaby007]

I hear you about the allergy thing. For over 4 years I have been struggling with this thyroid thing. About 3 months after being diagnosed, I started having tremendous stomach pain, shortness of breath and a multitude of other things. I had every test known to mankind ran on me and most things appeared normal. I kept trying to tell the Doctors that I felt it was associated with my thyroid somehow as it only started after I began medication and if I take my medicine for about 3 days in row I start getting the excruciating pain.

Fast forward 4 yrs and me sporadically taking my thryroid medicine (on a few days off a couple of weeks and so on and so on) and I got a new Endo. I was telling her what was going on and she immediately said I was probably allergic to the filler in the medicine (of which I had tried Levothyroxine, Levoxyl, Armour, Synthroid etc) and that she wanted me to try a Hypoallergenic Medicine for a couple of months.

So she prescribed me Tirosent and I started taking it. Well what do you know? I have now been on this medicine for 2 months straight and have not had an episode with my stomach. Not even once. It absolutely blows my mind that all this pain I have been going through was something as simple as an allergy! Thank goodness she listened and did not give me the standard "People have been taking thyroid medicine for a hundred years and it is absolutely safe, blah blah blah" line. Yes the medicine is safe, but apparently the fillers were not. Now I need to work on getting to the right dosage.

One thing I noticed in the beginning was I had a little bit of insomnia. I started to take my medicine right before bed and have not had that problem anymore. I am not sure what the difference is of taking it in the morning or evening (since it is not an instant thing and takes a while to store up in your body) but it did solve the whole "do not eat within an hr" problem for me. I simply take it and then get in bed.

I have been researching different Thyroid meds that are hypoallergenic and apparently there is one that also contains T3 called Nature-Throid. Does anyone have any experience with it? My dr does not like the dessicated meds, but I did really well energy wise when I was on Armour (just could not take it consistently) and would love to try it out.