Thyroid Disease Forum banner

1 - 20 of 348 Posts

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #1 ·
I realize I'm jumping around a bit today, and usually post in my thread over in the Hashi's area, but I wanted to post this here to get opinions. Thanks to the wonderful folks here (especially Andros) I have been following my thyroid more closely.

It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo. So I went and got it tested myself thanks to the urging here and of my family. I am being treated at the moment with Levoxyl.

Where should I go from here? Do I try to get another endo (this would be the third) to look at my case? Or just skip past all of that and go directly to an ENT for evaluation? Keep going with taking T4 and watching? I have no goiter, just some swelling that has reduced, along with a gazillion physical & mental signs and symptoms that come and go depending on the day. (Some likely from thyroid, some from low testosterone, and some from recently-discovered autoimmune hepatitis.) Quite honestly, whatever is going on is making a complete mess of my life.

4/20/11 - TPO Ab 253.7 (0.0-60.0)
4/20/11 - Thyroglobulin Ab 45.0 (0.0-60.0)
11/29/11 - TSI 31 (0-139%)

Thoughts? Suggestions? Who to see? Thanks! :rolleyes:
 

·
Premium Member
Joined
·
19,367 Posts
bigfoot said:
I realize I'm jumping around a bit today, and usually post in my thread over in the Hashi's area, but I wanted to post this here to get opinions. Thanks to the wonderful folks here (especially Andros) I have been following my thyroid more closely.

It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo. So I went and got it tested myself thanks to the urging here and of my family. I am being treated at the moment with Levoxyl.

Where should I go from here? Do I try to get another endo (this would be the third) to look at my case? Or just skip past all of that and go directly to an ENT for evaluation? Keep going with taking T4 and watching? I have no goiter, just some swelling that has reduced, along with a gazillion physical & mental signs and symptoms that come and go depending on the day. (Some likely from thyroid, some from low testosterone, and some from recently-discovered autoimmune hepatitis.) Quite honestly, whatever is going on is making a complete mess of my life.

4/20/11 - TPO Ab 253.7 (0.0-60.0)
4/20/11 - Thyroglobulin Ab 45.0 (0.0-60.0)
11/29/11 - TSI 31 (0-139%)

Thoughts? Suggestions? Who to see? Thanks! :rolleyes:
Remember; this is what I would do. See an ENT. Go to the top as they say. Enough is enough already.

Bless your heart. You know I am not surprised about the TSI; not in the least little bit. You probably have TBII as well.

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138

For one thing; the mere presence of all 3 of the above would dictate the possibility of cancer. You need to know.

No wonder you could not tolerate the Cytomel. You see, your thyroid is not at all stable. One day it puts out, one day not.

Please give this some serious thought and let us know what the game plan is.
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #3 ·
Andros -- thanks, I really do appreciate it so much! I was crossing my fingers that the TSI test would come back negative, but at least it now gives me another direction to head in. I am sitting here with a list of potential doctors; my gastroenterologist mentioned seeing a rheumatologist for my joint pain, my endocrinologist recommended seeing an neurologist for my memory and cognitive problems, my PCP isn't sure what to think, and I am stuck in the middle of it all, haha! Unfortunately, endocrinologists are in short supply and the one I have now is pretty darn smart and light-years ahead of the last one I saw. But my wife is upset that he passed on the TSI test and ultrasound so quickly -- she can't understand why. (Heck, neither can I.)

I still find it so weird that as I would be bumped up from dose to dose of Levoxyl (say, 75mcg to 88mcg), I would have about a week of feeling pretty good, thinking everything was on the mend. Then things would peter out and it would be back to the usual grind.

Yes, you are totally right -- no wonder I couldn't tolerate the Cytomel T3! I wonder if this is the same response when a small increase from 88mcg to 100mcg of Levoxyl took my TSH from 2.xx to 0.15, along with my FT4 from ~1.00 to 1.85.
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #4 ·
I guess I should ask -- should I be looking for a standard ENT, or am I looking to consult with a surgical ENT?
 

·
Premium Member
Joined
·
19,367 Posts
bigfoot said:
Andros -- thanks, I really do appreciate it so much! I was crossing my fingers that the TSI test would come back negative, but at least it now gives me another direction to head in. I am sitting here with a list of potential doctors; my gastroenterologist mentioned seeing a rheumatologist for my joint pain, my endocrinologist recommended seeing an neurologist for my memory and cognitive problems, my PCP isn't sure what to think, and I am stuck in the middle of it all, haha! Unfortunately, endocrinologists are in short supply and the one I have now is pretty darn smart and light-years ahead of the last one I saw. But my wife is upset that he passed on the TSI test and ultrasound so quickly -- she can't understand why. (Heck, neither can I.)

I still find it so weird that as I would be bumped up from dose to dose of Levoxyl (say, 75mcg to 88mcg), I would have about a week of feeling pretty good, thinking everything was on the mend. Then things would peter out and it would be back to the usual grind.

Yes, you are totally right -- no wonder I couldn't tolerate the Cytomel T3! I wonder if this is the same response when a small increase from 88mcg to 100mcg of Levoxyl took my TSH from 2.xx to 0.15, along with my FT4 from ~1.00 to 1.85.
Yes; increasing T4 could do the same thing on any given day.

I am with your wife. Actually, I would insist on RAIU but for that to be worthwhile you would have to go off all thyroid replacement meds for about 8 weeks so ultra-sound would be the best route to go right now.
 

·
Premium Member
Joined
·
19,367 Posts
bigfoot said:
I guess I should ask -- should I be looking for a standard ENT, or am I looking to consult with a surgical ENT?
Surgeon; experience w/thyroid.
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #7 ·
Oh man, and I thought finding an endocrinologist was hard!
 

·
Premium Member
Joined
·
19,367 Posts
bigfoot said:
Oh man, and I thought finding an endocrinologist was hard!
It might be easier than you think. I hope so. Keeping fingers crossed here.
 

·
Premium Member
Joined
·
4,918 Posts
I may be wrong on this (pretty sure I'm not), but I believe ALL ENTs are head & neck surgeons, and while I'm sure some do more thyroid surgeries than others, I'd be shocked if there are many who are just plain not experienced with thyroid surgery.

I may also be wrong on this, but I think the only reason it makes sense for you to see an ENT is if you are considering surgery. Otherwise, the ENT probably won't do much for you that an ENDO wouldn't.
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Things continue to get more interesting... apparently the tingling (pins & needles) that I have been feeling the last couple of days after starting Prednisone for autoimmune hepatitis could be tied into thyroid changes as well. So now my gastroenterologist is concerned and has me talking to my PCP to watch for changing thyroid levels. He feels it could be an autoimmune issue rearing its head, or else that the Prednisone is affecting my thyroid, or long-shot of Prednisone causing the tingling as a side-effect itself.

Either everything is starting to break free and come to the surface, or I have some incredible luck!

Quite honestly, I would consider surgery at this point. I know there are a few more diagnostics (ultrasound, TBII test, etc.) that have not been done on me, but I wonder if an ENT would consider my case anyway. My concern is the potential for cancer, as well as this incredibly fun autoimmune merry-go-round that I can't seem to stop.
 

·
Senior Member
Joined
·
92 Posts
I think I would still request an ultrasound, to get a good "picture" (pun intended) of what you are dealing with. It might help you decide what to try next AND it would give the doctors you see a good idea of what you have in there. Now, if getting an ultrasound will take you 6-8 weeks and a lot of headache I'd skip it, but explaining that you are concerned about cancer might get you in.

Of course, this is completely my own opinion and I have virtually no experience here, but it makes sense to me :)
 

·
Super Gold Veteran
Joined
·
414 Posts
It now appears I have the Thyroglobulin Antibodies, TPO Antibodies, as well as TSI present. My endo didn't see any value to the TSI test (or ultrasound) for my case when I asked recently, and considers me with Hashi's / hypo.
This is the problem with possible Hashitoxicosis. Endos see some numbers reflecting hypo and they never bother to test for TSI. I had to push to get my TSI done also, actually going over my endo's head to my family doctor to get it.

An ENT should be able to give you an ultrasound and FNA biopsy. If you have not had one yet, I think you should before you make any decisions. As Andros wrote, cancer needs to be ruled out.

I may be wrong on this (pretty sure I'm not), but I believe ALL ENTs are head & neck surgeons, and while I'm sure some do more thyroid surgeries than others, I'd be shocked if there are many who are just plain not experienced with thyroid surgery.
When I interviewed surgeons for my TT, one was an ENT in practice with 3 other ENT's. He was the only one in his practice that did thyroid surgery. The other 3 wouldn't touch it. Calling around to two other practices in the area and NONE of the ENT's did thyroid surgery. I wound up with a general surgeon who specialized in endoscopic thyroidectomies.
 

·
Premium Member
Joined
·
7,065 Posts
Koof said:
I think I would still request an ultrasound, to get a good "picture" (pun intended) of what you are dealing with. It might help you decide what to try next AND it would give the doctors you see a good idea of what you have in there. Now, if getting an ultrasound will take you 6-8 weeks and a lot of headache I'd skip it, but explaining that you are concerned about cancer might get you in.

Of course, this is completely my own opinion and I have virtually no experience here, but it makes sense to me :)
Agreed. Additionally, it helped me get into my surgeon a little early, having that u/s in hand that showed lots large nodules. (I mean, let's be honest, the people are in medicine to make money...when I show up with a picture that shows a thyroid that's a hot mess, I come with dollar signs on my head! :) )
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #14 ·
Thank you all very much for the input! (Feel free to keep it coming.) I called and made an appointment with an ENT for this Friday. That should hopefully get me a good second opinion and a fresh set of eyes to look at all of this.

One question my wife raised is about the TSI. I know you have shared the various spots on the 'net that say, "You should not have any presence of this in the blood". Her concern is that there are lot of other references to having less that 140% as being "normal" or "within range" (including Lab Corp, who processed my labs). Is there a definitive medical text or article that spells this out?

Another concern is with the confusing wording. A lot of texts and references say that TSI can be present with Hashimoto's, Hashitoxicosis, as well as Graves', nodules / cancer, and hyperthyroidism. Is it possible to have Hashimoto's *and* TSI in the blood, all the while remaining hypothyroid? Or is it inevitable that at some point the TSI will rise and become dominant? It's kind of hard to sort all of this out.
 

·
Premium Member
Joined
·
19,367 Posts
bigfoot said:
Things continue to get more interesting... apparently the tingling (pins & needles) that I have been feeling the last couple of days after starting Prednisone for autoimmune hepatitis could be tied into thyroid changes as well. So now my gastroenterologist is concerned and has me talking to my PCP to watch for changing thyroid levels. He feels it could be an autoimmune issue rearing its head, or else that the Prednisone is affecting my thyroid, or long-shot of Prednisone causing the tingling as a side-effect itself.

Either everything is starting to break free and come to the surface, or I have some incredible luck!

Quite honestly, I would consider surgery at this point. I know there are a few more diagnostics (ultrasound, TBII test, etc.) that have not been done on me, but I wonder if an ENT would consider my case anyway. My concern is the potential for cancer, as well as this incredibly fun autoimmune merry-go-round that I can't seem to stop.
Yep; peripheral neuropathy.

Glad you have this appt. for Friday and I feel that an ENT will definitely consider your case.

For one thing, you cannot get your other health issues on track as long as you don't resolve the thyroid issue. I happen to know that for a fact and from my own experience.

That little thyroid gland governs our entire bodies; for better or for worse.

And there you have it in a nutshell. Sadly!

 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #16 ·
You are sooo right it isn't even funny. My gastoenterologist repeatedly asked me what my endocrinologist thought about my thyroid status before starting this Prednisone treatment for AIH. I, of course, replied with exactly what I was told by the endo; that the 88mcg of Levoxyl is my right dose and labs are where they need to be, and to come back in 3-4 months for follow-up.

Obviously something, somewhere is not right. I don't expect every doctor to know everything or find everything. But my PCP wanting to put me on beta-blockers in the past and prescribing me Xanax recently is starting to make sense. Why, oh why, do they ignore the 800-lb. gorilla in the room? LOL
 

·
Senior Member
Joined
·
92 Posts
bigfoot said:
One question my wife raised is about the TSI. I know you have shared the various spots on the 'net that say, "You should not have any presence of this in the blood". Her concern is that there are lot of other references to having less that 140% as being "normal" or "within range" (including Lab Corp, who processed my labs). Is there a definitive medical text or article that spells this out?

Another concern is with the confusing wording. A lot of texts and references say that TSI can be present with Hashimoto's, Hashitoxicosis, as well as Graves', nodules / cancer, and hyperthyroidism. Is it possible to have Hashimoto's *and* TSI in the blood, all the while remaining hypothyroid? Or is it inevitable that at some point the TSI will rise and become dominant? It's kind of hard to sort all of this out.
I looked all over and found a good resource that made sense, and Andros helped me figure it out. The problem is I'm on my phone right now as I should be sleeping - 5 am comes quick! Since I can't link it, if you know how to search my posts you can look in my lab results thread. Andros found a good link and I quoted a few things. You can be hypo with TSI. Since TSI are stimulating, if you have blocking antibiodies they can overrule the stimulating ones. I think high TPO does the same. Whatever antibodies are most powerfult at the time rules how your TSH has responded and how you feel. Personally, my TSI was 93 but my TSH and symptoms seem to be usually hypo.

Sorry I can't answer any of your other questions.
 

·
Veteran Member
Joined
·
146 Posts
Hi bigfoot-

Sorry you are going through all of this. It sucks. Plain and simple. I am playing around with doctors now who don't look at my labs other than the "hypo" part (lowish T4 and high-ish TSH) and tell me, I'm definitely hypo and give me more meds regardless of my high TSI (3.8 and 2.7 the last time, range of <=1.3) or high TgAb (433 range of <116). However, all my symptoms are hypER, by far, except for a few days here and there (i.e. this weekend my dry skin came back out of nowhere, I slept for hours, no heart palpitations, no anxiety, and constipation). Then, two days later, hypER symptoms come back for several weeks (racing heart constantly, can't sleep, moist skin, headaches, jittery/trembling feeling, anxiety, extreme hunger). But none of this matters to the doctors. No one cares. I even had one endo tell me to stop my medicine so I could prove to myself just how much worse it was to be hypo. Um, really?? I'll take those problems any day over not being able to function due to 115 heart rate and constant jitters and no sleep.

I am giving two more endos a shot- new one on Friday, and a holistic, integrative one in February. I have no hope for anything to be done, but at least it's worth a shot. And I have made an ENT appointment. I want this thing out. I'm done with doctors telling me how I'm SUPPOSED to feel and that 99.99999% of people don't respond this way to thyroid medication. Well, apparently, I'm NOT a member of the 99% (wish that were true financially, though) and this line they keep throwing out just tells me they have no idea what the h*ll to do with people like you and me.

I really think you need to demand an ultrasound. They have no idea what is in there. That is ridiculous, especially given your past health problems, that they aren't going through this thyroid problem systematically. An ultrasound seems so basic. I even got one "in office" during a consult at one endo's appointment. That was AFTER my "official" one in the hospital radiology lab. If you get an US, and they see nodules, etc., then you have more "ammo" to demand to have it removed. That's my plan, anyway (I have two small nodules, too small to biopsy, but I plan to use them anyway to say, hey, we'd have to do something about them at some point anyway).

Speaking of ammo, this thyroid stuff is like playing Russian roulette. Even if it is "just" Hashi's, you will still have fluctuations as it dies out. And giving meds on top of these fluctuations, or on top of Graves, is playing with fire. You never know when your thyroid is loaded and will start working, "fire", or stop, or start working too much. And trying to manage it with meds, on top of the unpredictability, is just impossible. It's not necessary. It's dangerous at worst.

Have you considered seeing an acupuncturist? I started in July and she has been a life saver. From her Chinese-medicine perspective, I've always been a hard case. Too much "fire" internally, but not showing it in other symptomatic ways (via eastern medicine's definition of symptoms). She has always been puzzled. Then when we found out about the TSI and really thought about my symptoms (western) more, she said it all made sense. The push and pull, swings from hyper to hypo, it is all perfectly reflected in her eastern medicine observation. She has offered to help me more often, rather than just supporting what western medicine is *trying* to do now, to actually aggressively treating my imbalances through acupuncture and herbal medicine. I am seriously considering taking her up on this since I am about to give up on western medicine and think it is too dangerous for me to take more levo. She is also a practicing pharmacist, and she has been 100% right about almost everything since I've been seeing her (calling out what will be a problem, before it was even a problem). I HIGHLY recommend scoping out any acupuncturists you can find, and they will often be disillusioned medical professionals that will be able to help you with "both sides" of the issues. I am not sure this is the answer long-term, but until we figure things out and come up with a solid plan, this might be quite helpful.

Also, I'd contact any medical schools/teaching hospitals within driving distance. They might like to "use" you to teach their students given your medical history and current complications (I know that sounds horrible, but you know what I mean). They may be more willing to try a bunch of things since they have other goals other than just treating you and making money. I would write a letter describing your history and your situation and send it to anyone in the endo/surgery departments of those schools. Then follow up with a phone call. It's worth a shot. I am going to try this pretty soon, once I get around to writing a letter.

Not sure if this helps at all... this is NOT easy. It is so frustrating... and has been debilitating.
 

·
Registered
Joined
·
566 Posts
Enigma said:
Hi bigfoot-

Sorry you are going through all of this. It sucks. Plain and simple. I am playing around with doctors now who don't look at my labs other than the "hypo" part (lowish T4 and high-ish TSH) and tell me, I'm definitely hypo and give me more meds regardless of my high TSI (3.8 and 2.7 the last time, range of <=1.3) or high TgAb (433 range of <116). However, all my symptoms are hypER, by far, except for a few days here and there (i.e. this weekend my dry skin came back out of nowhere, I slept for hours, no heart palpitations, no anxiety, and constipation). Then, two days later, hypER symptoms come back for several weeks (racing heart constantly, can't sleep, moist skin, headaches, jittery/trembling feeling, anxiety, extreme hunger). But none of this matters to the doctors. No one cares. I even had one endo tell me to stop my medicine so I could prove to myself just how much worse it was to be hypo. Um, really?? I'll take those problems any day over not being able to function due to 115 heart rate and constant jitters and no sleep.

I am giving two more endos a shot- new one on Friday, and a holistic, integrative one in February. I have no hope for anything to be done, but at least it's worth a shot. And I have made an ENT appointment. I want this thing out. I'm done with doctors telling me how I'm SUPPOSED to feel and that 99.99999% of people don't respond this way to thyroid medication. Well, apparently, I'm NOT a member of the 99% (wish that were true financially, though) and this line they keep throwing out just tells me they have no idea what the h*ll to do with people like you and me.

I really think you need to demand an ultrasound. They have no idea what is in there. That is ridiculous, especially given your past health problems, that they aren't going through this thyroid problem systematically. An ultrasound seems so basic. I even got one "in office" during a consult at one endo's appointment. That was AFTER my "official" one in the hospital radiology lab. If you get an US, and they see nodules, etc., then you have more "ammo" to demand to have it removed. That's my plan, anyway (I have two small nodules, too small to biopsy, but I plan to use them anyway to say, hey, we'd have to do something about them at some point anyway).

Speaking of ammo, this thyroid stuff is like playing Russian roulette. Even if it is "just" Hashi's, you will still have fluctuations as it dies out. And giving meds on top of these fluctuations, or on top of Graves, is playing with fire. You never know when your thyroid is loaded and will start working, "fire", or stop, or start working too much. And trying to manage it with meds, on top of the unpredictability, is just impossible. It's not necessary. It's dangerous at worst.

Have you considered seeing an acupuncturist? I started in July and she has been a life saver. From her Chinese-medicine perspective, I've always been a hard case. Too much "fire" internally, but not showing it in other symptomatic ways (via eastern medicine's definition of symptoms). She has always been puzzled. Then when we found out about the TSI and really thought about my symptoms (western) more, she said it all made sense. The push and pull, swings from hyper to hypo, it is all perfectly reflected in her eastern medicine observation. She has offered to help me more often, rather than just supporting what western medicine is *trying* to do now, to actually aggressively treating my imbalances through acupuncture and herbal medicine. I am seriously considering taking her up on this since I am about to give up on western medicine and think it is too dangerous for me to take more levo. She is also a practicing pharmacist, and she has been 100% right about almost everything since I've been seeing her (calling out what will be a problem, before it was even a problem). I HIGHLY recommend scoping out any acupuncturists you can find, and they will often be disillusioned medical professionals that will be able to help you with "both sides" of the issues. I am not sure this is the answer long-term, but until we figure things out and come up with a solid plan, this might be quite helpful.

Also, I'd contact any medical schools/teaching hospitals within driving distance. They might like to "use" you to teach their students given your medical history and current complications (I know that sounds horrible, but you know what I mean). They may be more willing to try a bunch of things since they have other goals other than just treating you and making money. I would write a letter describing your history and your situation and send it to anyone in the endo/surgery departments of those schools. Then follow up with a phone call. It's worth a shot. I am going to try this pretty soon, once I get around to writing a letter.

Not sure if this helps at all... this is NOT easy. It is so frustrating... and has been debilitating.
Holy cow! You and I have the same numbers, same labs and same exact symptoms.....

Did replacement hormone make you feel any better? I've got a bottle of Synthroid sitting on my counter and am afraid it will kick start the heart palps real bad again. Thankfully, I think my thyroid is finally starting to give out so I have felt more hypo than hyper lately but when those hyper bouts do show their faces they still suck - same deal as you, resting heart rate around 112, shaky, dizzy, hot as hell, cant sleep for days....then it all goes away and Im left in a half a coma -exhausted from not sleeping and the hypo side.

How do the pills make you feel? Did they help at all? Last time I took my Synthroid was about 5 years ago when I really had more hyper than hypo and I thought I was gonna die...I felt horrible....all it did for me was exaggerate the hyper symptoms....

Here's a piece I wrote about it:

http://www.thyroidboards.com/hashitoxicosis/
 

·
Super Gold Veteran
Joined
·
1,666 Posts
Discussion Starter · #20 ·
Appreciate all the input! Yes, I am completely amazed that nobody ever did an ultrasound. They did an MRI of my pituitary though, go figure. That is one of my big requests to the ENT when I see her on Friday. Let's at least figure out what we're working with here.

My wife has asked me about seeing an acupuncturist, and I suppose I have held out with the hope that one of the more traditional doctors could help. Thanks for the recommendation -- I am starting to think that might be a good avenue to explore. I did see a good naturopath over the summer, but insurance money dried up.

What you guys are describing about each day being different makes total sense now. The constant push-pull scenario where one day it feels like you drank too much coffee, and then the subsequent crash and no energy for days on end. What a roller coaster. Ugh.

hugs3
 
1 - 20 of 348 Posts
Top