# hyper after total thyroidectomy eyes worse



## justmethatsall (Oct 1, 2015)

Oh boy! Everything went well with surgery and now I am right back where I started from with my eyes even worse. I started out really hyper then I went hypo before surgery. now I believe I am hyper again. Before surgery I was at 19 tsh so dr put me on 75 synthroid 3 days before surgery. Surgeon changed that and put me on 100. I was on that for 6 days before my eyes (which had started to get better around the time of surgery.....2nd week in Oct.) started getting worse again. Endo said go back to 75. I did for a couple weeks but each day I got more and more hyper symptoms. Endo said he would never give anyone less that 75 who just had their thyroid removed. My gp checked my levels a week ago and they were tsh 0.24 (0.40-4.50) t4 free 1.8 (0.8-1.8) t3 total 107 (76-181) and my tsi is back up to 461. Tsi had gone down from 520 to 385 a few days before surgery.........now a week ago back up to 461. My endo finally decided to do labs yesterday and I should know tomorrow what they are. He said to stop the synthroid for now I guess till we see what the labs say which surprised me because he said he wouldn't lower it when I asked. I only weigh 95 pounds now (lost another couple again). I don't understand why we cant start out slower with the meds especially because of my eyes and take it from there. There must be lower dosages than 75???? I honestly don't know if I can take one more of those pills knowing that they are making me hyper and ruining my eyes in the process even if he says.....go back on them! I will see the neuro-opthomologist again on Monday but he always just tells me........its imperative for me to get my levels under control with the endo!!!!!

Please...any advice welcome.


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## Lovlkn (Dec 20, 2009)

It's very difficult to read your question in a run on paragraph

Did they do a complete thyroid removal?



> My gp checked my levels a week ago and they were tsh 0.24 (0.40-4.50) t4 free 1.8 (0.8-1.8) t3 total 107 (76-181) and my tsi is back up to 461. Tsi had gone down from 520 to 385 a few days before surgery.........now a week ago back up to 461. My endo finally decided to do labs yesterday and I should know tomorrow what they are.


Surgery was what date?

What were your labs and ranges prior to your surgery?

Can you please edit your signature with a short history so it follows any topic post you make - which makes it easier for people to understand your situation.

Include diagnosis, last lab's with ranges and current medication and dosage.

Click on your log in name, Profile, edit profile and on the left is signature.


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## Octavia (Aug 1, 2011)

If you are truly hyper again, I agree with stopping the Synthroid for now. Having said that, your doctor is right...it's kind of unheard of for someone to need such a small amount of replacement meds. Then again, you are pretty small, so your dose may indeed be too high. Yes, there are dosages less than 75 mcg.


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## justmethatsall (Oct 1, 2015)

Octavia..............thank you.

Lovlkn.......total thyroidectomy oct 12.

tsh oct 8........ 19......... before surgery

t4 sept 30 .......... 0.28 (0.93- 1.70)

tsh sept 30............ 9.87

tsh oct 27 0.24

free t4.......1.8.....(0.8-1.8)

t3.........107.....(76-181)

Having a hard time on the computer with my eyes............hopefully they will get better and then I can put my history on.

tsi.........461........(under 140)


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## Lovlkn (Dec 20, 2009)

95lbs converts to 43kg X 1.7mcg = 73mcg of replacement hormone.

Good thing he ran labs. Lets see what they are before we can recommend what to do. Synthroid does come in a 50mcg dose, although I think that may be too low 7 days per week. Maybe your doc would consider an alternating dose protocol. Synthroid has a long 1/2 life so you should be fine alternating.

FYI - the "usual" starting dose is 100mcg for everyone regardless of weight. Stupid if you ask me but it happens all the time.



> tsh oct 27 0.24
> 
> free t4.......1.8.....(0.8-1.8)
> 
> t3.........107.....(76-181)


You need to ask / insist they run a Free T-3 along with a Free T-4 with every lab.


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## jenny v (May 6, 2012)

You may have had a hormone dump during surgery (where the thyroid dumps out all of its excess hormones into your system) and sometimes that takes a while to burn off, esp. if you were hyper going into surgery. I couldn't tolerate meds until 2 weeks after my surgery, but I was hypo going into it.


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## Andros (Aug 26, 2009)

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3
(Copy and paste into your browser)

Oh, you poor dear! I am worried about your eyes. Have you an ophthalmologist? If so, he/she can put you on Prednisone to calm them down

Why has your doctor NOT run FREE T3? This should be the guideline to dosing. Usually after the surgery, the patient has a Thyroxine Dump which causes extreme hyper so I do question the wisdom of your being told to take Synthroid right after the surgery w/o the FREE T3 Test. Free T3 is your active hormone.

Sending hugs your way,


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## justmethatsall (Oct 1, 2015)

lovlkn........thank you.

Dr's office called today.

Labs that I had on Tuesday are.........tsh 0.17 (0.40-4.50)

t3 97 (76-181)

free t4 1.4 (0.8-1.8)

Lab's that I had one week ago

from my gp tsh 0.24 same ranges as above

t3 107

free t4 1.8

tsi 461 (should be below 140) I know this is the one that affects my eyes. My eyes were feeling so much more comfortable a couple days before surgery and my tsi had gone down to 385 from 520 at that point. Now as you can see it is up again and my eyes are way worse.

Dr's office said to skip it again today (that's 3 days skipped) and continue on the 75 for 6 days a week and skip 1 day or if I feel that is too much I can take 5 and a half pills a week. I told the girl that I want to not take any till at least Monday as I have an apt with my neuro opthomologist and I have to drive there so I want to see if I have a difference from being off the pills a little longer with my eyes. She said she will ask and call me back.

He said he does not think my tsh even though low is not low enough to cause my symptoms! I know these are my symptoms that I have every time I go hyper except my eyes are so much worse this time. You see.....he has only seen me in a euthroyd state till this year. My other wonderful endo retired and I had to find someone else a few years back. This one says I need a neurologist because of my tremor!!! My tremor only gets like this because of my thyroid hormones. When I am euthroid it is hardly noticeable to anyone.

jenny v...thank you.....I was originally hyper and then turned hypo due to too much anti thyroid meds a couple weeks before surgery and then even more so 3 days before surgery. I had gotten down to 2.5 mg methimazole a day and he added 75 synthroid at that time. Surgeon changed it to 100 day after surgery and then endo changed it back to 75mcg 8 days after that. I have been on the 75 for about 12 more days till I couldn't take the symptoms any longer and this is where we stand today.

I had wondered about a dump............why don't they mention these things to us???????? He said maybe your surgeon didn't get all of your thyroid!!!!!!! I know he did. How did you know you couldn't tolerate the meds for 2 weeks after surgery??

Andros....thank you too! I am so worried about my eyes also! Are the prednisone eye drops? I always worry about steroids but I have to do something this time. Dr. actually put me on synthroid 3 days before the surgery because I had gone hypo. What I would like to do is not take the synthroid and do labs every week till we see that I need it and then start off slowly and I think my eyes will calm down again. My eyes only got this bad because I went so hyper in the beginning in July and then hypo and now hyper again. I have read that when you are so sick like this it is ok to do labs every week or two instead of waiting the 6 weeks.


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## Lovlkn (Dec 20, 2009)

Moving thyroid hormones are not helping your situation.

I'm totally confused - how many days prior to the lab below did you not take replacement med's?



> Labs that I had on Tuesday are.........tsh 0.17 (0.40-4.50)
> 
> t3 97 (76-181)
> 
> free t4 1.4 (0.8-1.8)


These labs are absoultely NOT HYPER - I don't think stopping meds completely and falling further into hypo is a good idea right now. The doc is looking at TSH and that is wrong. FT-4 and Total 3 are low.



> tsh oct 27 0.24
> 
> free t4.......1.8.....(0.8-1.8)
> 
> t3.........107.....(76-181)


It would be great if they would begin running a FT-3. A total 3 tends to track with FT-3 but the FT-3 gives a better idea of hormone in your system.

*What I see is - you are not converting your T4 only replacement medication properly. If you were , I would expect a higher Total 3 lab result.*

You now probably also have high Reverse T3 because your FT-4 got so high.

*What do you weigh??*


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## justmethatsall (Oct 1, 2015)

right now I am 96 pounds.


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## justmethatsall (Oct 1, 2015)

Yes Andros I would never do anything without the neuro opthomologists advice. My eyes are too precious to fool around with.

When you get a test on your own.............you order it from a site right and then take it to the lab. Does the lab then charge you for checking your blood or have you already paid for everything where you ordered the script?

Thank You.


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## Lovlkn (Dec 20, 2009)

justmethatsall said:


> Yes Andros I would never do anything without the neuro opthomologists advice. My eyes are too precious to fool around with.
> 
> When you get a test on your own.............you order it from a site right and then take it to the lab. Does the lab then charge you for checking your blood or have you already paid for everything where you ordered the script?
> 
> Thank You.


You order and pay the lab cost on the website.

They give you a lab slip and often it's Labcorp that draws the labs.

Your results are emailed to you within a few days.

Try this lab - they have a fairly inexpensive package that includes TSH, FT-4 and FT-3 and a few others that are not as important such as the Total 3 and Total 4.

http://www.healthonelabs.com/pub/tests/test/pid/167

They also offer a reverse T3, which you might consider since you have been all over the lab ranges recently.

http://www.healthonelabs.com/pub/tests/test/pid/206



> Labs that I had on Tuesday are.........tsh 0.17 (0.40-4.50)
> 
> t3 97 (76-181)
> 
> free t4 1.4 (0.8-1.8)





> I did not take synthroid on the day the labs were taken. I had been taking it for 23 days prior.........started taking it 3 days before my tt surgery.


I'm going to stand by my prior comment regarding your "conversion" or lack of FT-4 to FT-3.

Without a thyroid your labs are going to quickly slip hypo not taking any medications - you will also earn the "non compliant" patient label, making it harder to work with your current doctor.


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## justmethatsall (Oct 1, 2015)

My problem is my eyes! I have not been on anything for 4 days now and today is the first day that my eyes feel like they are my eyes. Still lots of problems (I don't expect them all to go away at once) but I can actually move them around a little today. They don't feel so frozen and not as extremely wide open.

If you think I am not hyper.........then is it your opinion that I am hypo?

Thanks


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## Lovlkn (Dec 20, 2009)

It is my opinion that your T4 only hormone is not converting properly but you have no FT-3 to confirm that. My opinion is based on the labs you provided FT-4 and Total 3.

I'm not sure what it would technically be called as you are high FT-4 and Low total 3 and likely low in FT-3.

That combination causes alot of issues for me - mostly hyper.

Once your FT-4 falls due to your dose decrease, you will quickly turn hypo.


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## justmethatsall (Oct 1, 2015)

...........I e-mailed healthone because my state was not listed.........to ask why. They responded and said that my state has laws against that. My luck!

The neuro opthomologist put me on steroids today and I have to see him again next week. I will most likely be starting the synthroid again tomorrow. He is in another state that does allow the self testing. If I do my labs then......... will the steroids skew the results? He also put me on pantoprazole I believe to protect my stomach. The dosage of the steroid is 80 mg at once every day.

Does anyone know if this is a normal dose or is it high?


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## Andros (Aug 26, 2009)

HealthCheckUSA
http://www.healthcheckusa.com/
(Copy and paste into your browser)

HealthOne labs
http://www.healthonelabs.com/pub/tests/test/pid/205

Yes; I had severe proptosis and other really bad problems w/the eyes. I am lucky I can see.

Here are 2 more lab links.


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## Lovlkn (Dec 20, 2009)

Seems that Healthone and HealthcheckUSA now have similar pricing for the FT-4, FT-3 and TSH $80-85 for those tests.

Healthone just had a fairly significant price increase from $59 to $85.

The link for the HealthcheckUSA combo is http://www.healthcheckusa.com/thyroid-tests/panels/thyroid-panel-ii-t4-free-t3-free-with-tsh.aspx


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## justmethatsall (Oct 1, 2015)

Neither one of these offer this for my state. I have to go to another state to be able to do my own labs. They have laws here that don't allow that.


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## Lovlkn (Dec 20, 2009)

Then you need to INSIST your doctor run both the FT-4 and FT-3 to confirm you are converting properly because what you posted with such a high FT-4 and Total 3 would suggest you are not properly converting.

Alot of people do not convert properly - sometimes finding a doctor to acknowledge this is difficult - you will need to find a doctor who will monitor both for your eyes to get under control.


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## justmethatsall (Oct 1, 2015)

Thank You.

I could get the labs from healthone and do the test while I am visiting the neuro opthomologist in a nearby state next week. They do accept these personal labs over there........just not here in my state. However I am on steroids for my eyes now. Will this affect my lab results?

Am wondering if anyone knows how long it might take to notice a difference in my eyes being on the steroids. Also does anyone know about the radiology treatment for thyroid eye disease? Andros?


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