# So frustrated!!



## minli (Aug 2, 2011)

I don't know why this is happening, my doc is pretty baffled too.

November 29th: ranges in ()

TSH = <0.06 (0.45-4.5)
T4 = 6.22 (0.82-1.77)
T3 = 491 (71-180)

*Put on 30mg Methimazole (once daily) and 20mg Propranolol (as needed)*

December 16th:

TSH = <0.06 (0.45-4.5)
T4 = 3.27 (0.82-1.77)
T3 = 346 (71-180)

*Meds reduced to 20mg Methimazole, Propranolol stayed the same*

January 12th:

TSH = <0.06 (0.45-4.5)
T4 = 3.49 (0.82-1.77)
T3 = 307 (71-180)

*This baffles the doc who expected my T4 to reduce to the 2.5 range at least. I am bumped back up to 30mg Methimazole and Propranolol is increased to 40mg as my heart rate was 137 during the apt.*

January 25th:

*My resting pulse/BP jumped to 154/77 (BP) 145 (pulse) and continued to rise for one hour. We took me to the ER as it was after office hours and we did not want to risk anything. I was admitted after they determined my levels had yet again risen. They were afraid I was starting to storm as I developed a low-grade fever in the half an hour it took from triage to IV. All tests for infection came back negative*

TSH = <0.06 (0.45-4.5)
T4 = 3.78 (0.82-1.77)
T3 = 507 (71-180)

*Endo saw me in the hospital, bumped the Methimazole to 40mg, started IV steroids, and sent me home with a script for MethylPREDNISolone.*

Anyone have any idea why this is happening? My doc said he doesn't understand why my levels keep rising even with raising the meds. Or why I responded so well at first and now we cant get anything to lower. He also said this is the last ditch effort for meds, blood in 2 weeks, apt the week after. He wants to do RAI with guidance from a neuro eye specialist since my eyes are getting worse and worse if my blood levels don't even out.

I am just so confused.


----------



## Andros (Aug 26, 2009)

minli said:


> I don't know why this is happening, my doc is pretty baffled too.
> 
> November 29th: ranges in ()
> 
> ...


Sometimes, advanced hyperthyroid simply does not respond to anti-thyroid medication.

Apparently your TSI is very very strong and winning the game.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

I "presume" you have had RAIU (radioactive uptake scan?) You may be better off to get surgery instead of the RAI because of your eyes and also because sometimes cancer of the thyroid causes hyper and also creates a situation where the thyroid is not reponsive to anti-thyroid meds as well.

Have you had any scans or FNA (fine needle aspiration) at all?


----------



## minli (Aug 2, 2011)

yes, had the RAI/U scan in may (results were 74% at 4 hour and 83% at 24 hour). My ex GP told me the results were normal and to follow up in 6-8 months. When I did follow up I was storming, which is how I got in touch with my Endo 

also had an ultrasound in April (done by ex-GP) which came out with a rather sizable solid nodule in the left lobe, but cystic and solid nodules throughout both lobes. I plan on going over both with my Endo at my next apt. His PA was treating me until the recent hospitalization and she wanted to get my levels more under control before redoing the ultrasound and adding a FNA of at least the large solid nodule and the band of cystic lesions that stretch across the top of the whole gland. I'm going to ask the Endo for a second opinion as cancer is definitely something I am concerned about given how quickly things have deteriorated


----------



## miltomeal (May 17, 2011)

i am glad to hear that you are not using your ex-gp. i do not believe that your RAIU results are anywhere near normal. I may be mistaken, not sure if RAIU is the same as blood tests where different labs use different ranges.

i would agree with Andros about advanced hyperthyroid for you, your TSH is suppressed and the uptake is extremely high. hopefully your endo will move things forward for you!

hand in there, be patient, you will get better!!!


----------



## minli (Aug 2, 2011)

almost forgot, as far as the antibodies go:

11/29

TSI = 587
TPO = 319

12/16

TSI= 389
TPO = 325

I questioned the PA on why the TPOab went up and she blew it off as being no big deal, she stopped testing my antibodies after that apt. Endo has revised to add the antibodies for the blood draw I have scheduled on the 16th as they were way up again when tested in the hospital.

1/25

TSI = 602
TPO = 415


----------



## minli (Aug 2, 2011)

miltomeal said:


> i am glad to hear that you are not using your ex-gp. i do not believe that your RAIU results are anywhere near normal. I may be mistaken, not sure if RAIU is the same as blood tests where different labs use different ranges.
> 
> i would agree with Andros about advanced hyperthyroid for you, your TSH is suppressed and the uptake is extremely high. hopefully your endo will move things forward for you!
> 
> hand in there, be patient, you will get better!!!


Thank you 

I have learned, but could be wrong, the guideline for RAIU/S is 30% and under is generally considered normal. What killed me is the impression clearly stated "hyperthyroid goiter" but ex-GP sat on it.

I am very tempted to just ask what my chances are to overcome this w/o surgery and see what happens. The longer I deal with this, the more I don't see getting through this w/o surgery happening.

Just gotta breathe


----------



## miltomeal (May 17, 2011)

to me it looks like the anti-thyroid meds are not working for you. You really are down to two choices - RAI or surgery. Either way, i feel that you need to do something about your hyperthyroid either sooner or later. and my vote would be for sooner and probably surgery because of your eyes. 
hyperthyroid has a lot of negative effects on your body. it is put through the wringer thru this and cannot heal properly, along with all the mental issues that come along. Your heart is vulnerable, how is your pulse and blood pressure, are you on a beta blocker? 
try some deep breathing, yoga or qi-gong, and/or some meditation. These techniques can help with some of those darn mental issues!
i am now hypo, after a roller coaster of 2011, and getting pretty close with my blood work (i hope), but my body is still on another planet. I am still reminding myself everyday to be patient and that time will help me get to where i want to be. i don't believe i would be this far without the support of this forum and the great advise from friends here; keep on posting here, there are a lot of people who really care and are here to support us all.


----------



## minli (Aug 2, 2011)

I am on Valium for the anxiety and have been diagnosed with sinus tachycardia, so am on Propranolol (Inderal) for the palpitations.

I have blood drawn on the 16th then the apt will be on 22nd. The Endo told me in the hospital that we will be moving fast with another course of treatment if the increase of Methimazole and steroids don't improve things.

I just want to definitively know what is going on and treat it as aggressively as we can


----------



## Lovlkn (Dec 20, 2009)

minli said:


> I am on Valium for the anxiety and have been diagnosed with sinus tachycardia, so am on Propranolol (Inderal) for the palpitations.
> 
> I have blood drawn on the 16th then the apt will be on 22nd. The Endo told me in the hospital that we will be moving fast with another course of treatment if the increase of Methimazole and steroids don't improve things.
> 
> I just want to definitively know what is going on and treat it as aggressively as we can


If you have eye involvement then opt for surgical removal.

You also have both antibodies which in my opinion is another reason to opt for surgical removal.

If you get an appointment with a surgeon they will definitely remove it based on your history. Bring your lab results.

I did notice that you have the T-4 and T-3 vs the FT-3 and FT-4 which are a much better indicator of active thyroid hormones.


----------



## minli (Aug 2, 2011)

sorry, those are all free levels. The GP did bonded levels, but the Endo's office only does free level testing.


----------



## Andros (Aug 26, 2009)

minli said:


> yes, had the RAI/U scan in may (results were 74% at 4 hour and 83% at 24 hour). My ex GP told me the results were normal and to follow up in 6-8 months. When I did follow up I was storming, which is how I got in touch with my Endo
> 
> also had an ultrasound in April (done by ex-GP) which came out with a rather sizable solid nodule in the left lobe, but cystic and solid nodules throughout both lobes. I plan on going over both with my Endo at my next apt. His PA was treating me until the recent hospitalization and she wanted to get my levels more under control before redoing the ultrasound and adding a FNA of at least the large solid nodule and the band of cystic lesions that stretch across the top of the whole gland. I'm going to ask the Endo for a second opinion as cancer is definitely something I am concerned about given how quickly things have deteriorated


Aaaaaaaaaaaaaaaw; see? Cancer indeed is a bedfellow to hyperthyroid. Gee, I think you should just have it out; do you agree?

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418


----------



## minli (Aug 2, 2011)

I am growing more and more convinced every day that I may need it taken out. I was hoping it wouldn't come to that because I really didn't want to play the hypo after hyper game, but it looks like it may be unavoidable.

At least I gave it my best shot


----------



## Andros (Aug 26, 2009)

minli said:


> almost forgot, as far as the antibodies go:
> 
> 11/29
> 
> ...


Yikes; not good. The antibodies are climbing and climbing. You must feel so ill!

Read this please.............

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Not only that; as you know, your "uptake" (RAIU) was high.


----------



## minli (Aug 2, 2011)

I feel terrible all the time. I haven't been allowed to do anything since November.


----------



## Lovlkn (Dec 20, 2009)

My antibodies went up and up while on anti thyroid meds. I felt terrible - surgical removal of my thyroid was thebest decision for me and I think it will be for you as well.

My TPO's was 1500+ and TSI was 350+ when I decided to do surgery after 4+ years of monthly lab testing an med's adjustments. I've on the same or close to the same dose of replacement for years now -Ahhh - what relief.

Start researching surgeons in your area- find one that performs 4-5 thyroid removals a week. If you bring your lab's they likely will schedule you on your way out of the office.

Good Luck!


----------



## minli (Aug 2, 2011)

I've started on the search for a surgeon this week, waiting until the blood draw on the 16th to see what, if anything, this latest onslaught has done.

Honestly I feel no better today than I did when my FT4 was 6.22.


----------



## Andros (Aug 26, 2009)

minli said:


> I've started on the search for a surgeon this week, waiting until the blood draw on the 16th to see what, if anything, this latest onslaught has done.
> 
> Honestly I feel no better today than I did when my FT4 was 6.22.


Please let us know as soon as you get hooked up with a surgeon and what he/she has to say.

Wishing all the best for you; enough is enough already.


----------



## minli (Aug 2, 2011)

ok, new results from blood work done on Thursday:

mine = bold
ranges = ()

T4,Free(Direct)	*2.42* (0.82-1.77)	
TSH *<0.006* (0.450-4.500)	
TSI	*378* (0-139)	
Triiodothyronine (T3)	*258* (71-180)	
(TPO) Ab	*260* (0-34)

The surgeon and my normal Endo are both going to be at the appointment with me tomorrow so I can try to figure out the best course of treatment. I cannot stay on 40mg of Methimazole much longer as my liver levels doubled.

I know my Endo is going to want me to either switch meds or drop down to a lower dose of MMA (which ended me up in the ER the last time), but honestly with both antibodies being high, wouldn't I be inviting more problems down the road when we will eventually have to titrate down?

So very confused.


----------



## Andros (Aug 26, 2009)

minli said:


> ok, new results from blood work done on Thursday:
> 
> mine = bold
> ranges = ()
> ...


Are you considering surgery? I think we discussed the fact that cancer should be ruled in or out.

You are as you well know, extremely hyper. This is so not good not just for the liver but your heart, lungs, eyes, kidneys..................you name it.

Very very worried about you. Bless your heart.

Please let us know what the 2 of them have to say when you are able to report in.


----------



## minli (Aug 2, 2011)

Will do.


----------



## Andros (Aug 26, 2009)

minli said:


> Will do.


Keeping you in thoughts and prayers for tomorrow!


----------



## minli (Aug 2, 2011)

Met with both the surgeon and my Endo and they argued for quite a while and both agreed to the following:

1. Keep me on 40mg of Methimazole since my levels are at the lowest they've been since I was diagnosed with Grave's back in November. (They both said my liver levels are elevated, but well within normal ranges)

2. Adding PTU 100mg twice a day to try to get the jitters and and anxiety under control since it has been insanely bad lately.

3. Adding Prednisone 10mg twice a day for the next three days (can bump it to three times a day if needed) for the jitters, eye issues, and anxiety. After three days I am in control of when/if I will need to take the steroids.

4. Blood in a month (my veins are completely tapped out) and apt with them both the week after blood.

5. Testing my estrogen and testosterone levels as it is suspected I may have PCOS on top of the Grave's

6. Ultrasound will be redone next week with FNA to follow if warranted.

7. They both talked to my Cardiologist after my resting pulse was still 116 and BP was 143/101 at the apt today. Cardiologist agreed to a more aggressive approach to trying to control that so we bumped up my Inderal to 40mg 3 times a day.

When we check my levels again, if they are in the sweet spot of normal range, we will start slowly tapering me off the meds and see what happens. I got both to agree that if my levels start to raise either during this month of assault or when tapering the meds, my thyroid will be removed.


----------



## lainey (Aug 26, 2010)

What were they arguing about? Why is there an argument?

I'm so sorry--I've read the whole post and can't believe that these doctors can't agree:

1) The medication is not sufficient to control your condition and your thyroid should come out.

They prescribed a second medication and more beta blockers to control your symptoms, and are seriously talking about:

TAPERING OFF????

This makes me so upset for you. As a layperson, your levels are not close to normal, even if they are the lowest they've been, and you are recovering from a thyroid storm--they should be talking about getting your levels lower so that they can

remove the *&^^% gland.

I'm don't mean to seem like I'm shouting at you. The "conservative" treatment would be to not continue to torture you or your poor liver any more, but to end this with surgery.

Have you thought about seeking a second opinion from another endo?


----------



## minli (Aug 2, 2011)

Unfortunately the arguments stemmed from the fact that I started out last November with a FT4 at 6.22 and now it's in the 2's.

The surgeon agreed with my Endo that since the antibodies reduced, FT3, and FT4 also reduced, we should at least try this aggressive attack and see if we can knock the stubborn out of my thyroid as it is finally responding.

I called a few offices this afternoon for a second opinion, but have not rec'd a call back yet.


----------



## lainey (Aug 26, 2010)

The antibodies really aren't affected by the meds, so a little prayer that they back off a bit on their own.

In the meantime, I am concerned for you. It is unusual to use two antithyroid drugs at the same time. You haven't had the best management from doctors (this doc reduced your dose the first time before you were even in range), have been quite ill, and must be quite tired of it.

I hope you get some relief from the addition medication, as your levels are still quite hyper.


----------



## Andros (Aug 26, 2009)

minli said:


> Met with both the surgeon and my Endo and they argued for quite a while and both agreed to the following:
> 
> 1. Keep me on 40mg of Methimazole since my levels are at the lowest they've been since I was diagnosed with Grave's back in November. (They both said my liver levels are elevated, but well within normal ranges)
> 
> ...


I must say that I can not add to what Lainey has said. I am shocked that they are Rx'ing this sort of treatment regimen.

Do you feel comfortable with all of this?

Sending many hugs,


----------



## minli (Aug 2, 2011)

I am doing better with the steroids, the anxiety symptoms were getting unbearable. And the increase to the Inderal has helped with the jitters and heart issues.

The way I looked at it is if they both want to go this route, I'll entertain it while obtaining a second opinion......BUT if those levels raise at all, they must take the danged thing out!

I have an apt scheduled with another surgeon next Thursday, so we'll see what she says


----------



## Andros (Aug 26, 2009)

minli said:


> I am doing better with the steroids, the anxiety symptoms were getting unbearable. And the increase to the Inderal has helped with the jitters and heart issues.
> 
> The way I looked at it is if they both want to go this route, I'll entertain it while obtaining a second opinion......BUT if those levels raise at all, they must take the danged thing out!
> 
> I have an apt scheduled with another surgeon next Thursday, so we'll see what she says


I am concerned about damage to your heart, liver and kidneys. Next Thursday cannot come to soon to suit me.

Bless your little heart!


----------

