# Is My Endo Full of It?



## xLeBeaux (Nov 10, 2012)

In Dec, my endo added 5 mcg of Cytomel to my prescription because I told him how tired and fat I've been on my levothyroxine.

3 weeks ago he added another 5 mcg of Cytomel (so I'm on 10 mcg Cytomel total and 1 1/2 Levothyroxine) and over the last 2 weeks I've felt SO tired like when I first got diagnosed with Hashi's before I was ever on medication. I went in 2 weeks early for my blood test this time because I was worried something was wrong.

My Free T4 is .09 and he says it's normal because the Cytomel is suppressing my TSH which is suppressing my T4 and it shouldn't make me feel poopy. I thought if your Free T4 was in the lower end you were gonna feel pretty crummy? Also he won't test my FT3, he says it's just internet hype. So my question is, why am I feeling like crap? Is Cytomel suppressing my T4 which is making me tired? Do I add more Levothyroxine? Cause thats what the endo did, now I'm on 50 mcg Levothyroxine...

All my labs:

*9/5/2012	*

TSH 0.83 (0.10-5.50 uIU/mL)

*9/11/2012*

Free T4 1.1 (0.8-1.7 ng/dL)
TPO AB 262 < 35 IU/mL

*10/3/2012	
*
TSH 0.68 (0.10-5.50 uIU/mL)

*11/9/2012*

TSH 0.71 (0.10-5.50 uIU/mL)
Free T4 1.0 (0.8-1.7 ng/dL)
TSI 298% <130%
T3, Total 118 (50-170 ng/dL)

*12/13/2012	*

TSH 0.28 (0.10-5.50 uIU/mL)
Free T4 1.2 (0.8-1.7 ng/dL)
TPO AB 274 < 35 IU/mL

*1/7/2013*

TSH 0.86 (0.10-5.50 uIU/mL)
Free T4 1.1 (0.8-1.7 ng/dL)
T3, Total 166 (50-170 ng/dL)

*1/28/2013	*

TSH 0.56 (0.10-5.50 uIU/mL)
Free T4 0.9 (0.8-1.7 ng/dL)


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## Octavia (Aug 1, 2011)

Adding more Levo seems to me like the right thing to do. I'm not sure about adding the Cytomel without testing your FT3, and before getting your Levo dose right.

Your FT4 results have consistently been at the very bottom of the range, or in the case of your latest results on 1/28, below range...therefore, adding Levo is the right approach here. (But would you please double-check your FT4 results and range for your 1/7 results? What you posted seems off.)


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## xLeBeaux (Nov 10, 2012)

Octavia said:


> Adding more Levo seems to me like the right thing to do. I'm not sure about adding the Cytomel without testing your FT3, and before getting your Levo dose right.
> 
> Your FT4 results have consistently been at the very bottom of the range, or in the case of your latest results on 1/28, below range...therefore, adding Levo is the right approach here. (But would you please double-check your FT4 results and range for your 1/7 results? What you posted seems off.)


I fixed the ranges lol. That's what I get for posting it at 3am. My endo didn't seem concerned with my FT4 results. He says it fluctuates throughout the month so as long as my TSH is within normal range he's happy. But if I tell him how bad I'm feeling he'll usually increase one medication or the other. So is it safe to say that my FT4 being in the lower part of the range is why I've been feeling so tired? And is it because of the Cytomel? I don't want him to take away my Cytomel. It's done this amazing thing of leveling out my moods and making my depression go away.


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## Octavia (Aug 1, 2011)

xLeBeaux said:


> So is it safe to say that my FT4 being in the lower part of the range is why I've been feeling so tired?


Yes, that could be most of the problem. If someone were to look at your FT4 alone, you're borderline hypothyroid. BUT your TSH says something different, which could be due to your antibodies.



xLeBeaux said:


> And is it because of the Cytomel? I don't want him to take away my Cytomel. It's done this amazing thing of leveling out my moods and making my depression go away.


No. The low FT4 is from not enough T4 medication (Levo). Cytomel is primarily a T3 medication.


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## Lovlkn (Dec 20, 2009)

He's full of crap...

When you take both levo and Cytomel your goal is 1/2 to 3/4 range for both your FT-4 and FT-3.

If your doctor will not run your FT-3 lab you can get all 3 tests for around $85 on HealthcheckUSA.com.


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## iroczinoz (Aug 15, 2011)

Sounds like you need a new doctor. Just so many things wrong coming out of his mouth. Don't forget he is your client he gets paid because of you.

This doctor might have printed his degree online.


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## Andros (Aug 26, 2009)

xLeBeaux said:


> In Dec, my endo added 5 mcg of Cytomel to my prescription because I told him how tired and fat I've been on my levothyroxine.
> 
> 3 weeks ago he added another 5 mcg of Cytomel (so I'm on 10 mcg Cytomel total and 1 1/2 Levothyroxine) and over the last 2 weeks I've felt SO tired like when I first got diagnosed with Hashi's before I was ever on medication. I went in 2 weeks early for my blood test this time because I was worried something was wrong.
> 
> ...


FREE T3 is not hype but it is an expensive test. My thinking is that you might be wise to address your ferritin level.

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

There are many reasons a person can feel tired and this is one of many.

Now here is where the FT3 would be really important.................; if you are overdosed (hyper), that could make you exhausted. It truly could.

Why don't you go here and get your FT3 maybe?

HealthCheckUSA

http://www.healthcheckusa.com/


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## CA-Lynn (Apr 29, 2010)

Andros is right....if you are overdosed you could be running out of steam, making you tired.

I have a great endo, and she knows I do best when my TSH is barely on the radar screen. Because she knows Levoxyl can wear you down, she periodically nudges me to lower the dose, just a tad.

Think see-saw, fulcrum for you scientists. Finding the right balance takes work.


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## xLeBeaux (Nov 10, 2012)

Thank you everyone. I appreciate all the advice!

I will definitely be taking the testing into my own hands. I tried to ask my PCP if she would be able to order TBII, TRAb and anything having to do with my adrenals and she said she didn't have access to those tests.

So I sent my Endo a msg asking if he would write me a referral to get the tests done at Quest since they can't do them there (I have Kaiser).

Endo wrote me back with:

"_I am asking my staff to set up a time to talk.
I do not see the utility of mutliple Ab's if we are treating the thyroid function tests.
Maybe you can enlighten me._"

I took that kind of offensively. I tried to switch Endo's and was told in order to do that I would need a referral from my CURRENT Endo. What? Thats stupid. I'm at a loss right now. I should be able to pick whatever Endo I want to see and be able to request whatever test I want, so I won't have to pay for them out of pocket. That's why we have insurance, right? SO ridiculous.

I've been reading a lot about people who have Hashi's and have high TSI, which could mean they actually have Graves but it's being kept at bay by TSH blocking receptors which is making them hypo...? Thats why I wanted the other antibody tests done.


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## iroczinoz (Aug 15, 2011)

xLeBeaux said:


> Thank you everyone. I appreciate all the advice!
> 
> I will definitely be taking the testing into my own hands. I tried to ask my PCP if she would be able to order TBII, TRAb and anything having to do with my adrenals and she said she didn't have access to those tests.
> 
> ...


Haha, this is an Endo who basically just deals with endocrinology issues which is a pretty small field when you think about it compared to a GP.

She would like you to enlighten her a supposed specialist a career she undertook at free will. Far out tell her to get educated and write a referal to see an endo that you have in mind. I would have zero patientce with a doctor like that basically clueless in her chosen field which is absolutely hilarious!

They should have auditors who make appointments with doctors and test them out to weed out the terrible ones.


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## HotGrandma (Sep 21, 2012)

xLeBeaux said:


> I've been reading a lot about people who have Hashi's and have high TSI, which could mean they actually have Graves but it's being kept at bay by TSH blocking receptors which is making them hypo...? Thats why I wanted the other antibody tests done.


Just to clarify: TSI is a separate test to test for "Graves". If you have TSI usually you have "Graves". At least that's my understanding. I was diagnosed hypo 4 years ago and diagnosed with "Graves" 2 years ago.


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## Andros (Aug 26, 2009)

xLeBeaux said:


> Thank you everyone. I appreciate all the advice!
> 
> I will definitely be taking the testing into my own hands. I tried to ask my PCP if she would be able to order TBII, TRAb and anything having to do with my adrenals and she said she didn't have access to those tests.
> 
> ...


If that doctor does not have a clue about "all" the autoantibodies and antibodies associated w/thyroid disease, you are in trouble.

You appear to be much better informed than she.


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## sleepylady (Mar 18, 2012)

Does TSI have to be Graves or can it just be hyper?


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## HotGrandma (Sep 21, 2012)

Andros had a great link that is not up currently.

From what I was told by my Doc is if you have TSI you have "Graves". According to my lab, you have to have a certain level of TSI to have "Graves"

I guess depends who you talk to and what your other labs are.

Sorry, but I think "Graves" has taken part of my brain, cause I cannot find specific info.

[QUOTETesting Thyroid-stimulating Immunoglobulin (TSI) Levels

Thyroid-stimulating immunoglobulin (TSI) is a type of antibody (immunoglobulin) measured from drawn blood. TSIs can bind to tissues in the eyeballs and beneath the skin and contribute to the development of exophthalmos (bulging eyes) and pretibial myxedema (skin thickening on the front of the lower legs). You can read our article on these possible symptoms of Graves' disease to learn more.

Checking the TSI level is done if the doctor can't definitively diagnose Graves' disease from your symptoms and TSH, T3, and T4 levels.
][/QUOTE] Source: http://www.endocrineweb.com/conditions/graves-disease/graves-disease-diagnosis#antibody_levels


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## lainey (Aug 26, 2010)

> 1/7/2013
> 
> TSH 0.86 (0.10-5.50 uIU/mL)
> Free T4 1.1 (0.8-1.7 ng/dL)
> T3, Total 166 (50-170 ng/dL)


Is there some particular reason you are getting labs every 4 weeks or so? To begin with, it takes 6 to 8 weeks to see the full effects of any dosage change. This leaves you in the position of continually chasing numbers, without having given the meds time to work.

The labs I see show a TSH and free T4 slowly being suppressed, both because of the exogenous T3. I highlighted the above labs because in these labs he tested total T3 and you will notice that it is nearly at the top of the range--I would be willing to guess that your Free T3 is quite high as well (although you don't know without testing it).

Not everyone feels well with suppressed numbers and a high T3, and you are likely one of them.

People often assume that if they are hyper, they will have extra energy. This is often not true, as the metabolism running in high gear all of the time will often leave a patient feeling that the have less energy. It is a bit of a paradox, because they then wish to add more medication, and force their numbers lower, because they are convinced that the suppressed numbers will be the answer. Sometimes less, in terms of medication, is really more.

I also don't disagree with his comment on running antibodies tests--you've had the tests, you have the antibodies--these tests are used for diagnostic purposes, monitoring the antibodies is superfluous as they are not influenced by the treatment.

That said, as for internet hype, your TSI values came back quite high. It has been my experience on the forums that patients with both sets of antibodies, as you have, rarely do well on T3 medication of any type. Your thyroid is being stimulated and suppressed by the antibodies themselves, adding extra T3 often exacerbates the problem.

What were your levels at diagnosis? What were they before you added the cytomel?


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## Andros (Aug 26, 2009)

sleepylady said:


> Does TSI have to be Graves or can it just be hyper?


It can be hyper only. TSI is sometimes present in Hashi's.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.
(3 chapters) http://www.thyroidmanager.org/chapter/graves-disease-and-the-manifestations-of-thyrotoxicosis/


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## xLeBeaux (Nov 10, 2012)

lainey said:


> Is there some particular reason you are getting labs every 4 weeks or so? To begin with, it takes 6 to 8 weeks to see the full effects of any dosage change. This leaves you in the position of continually chasing numbers, without having given the meds time to work.
> 
> The labs I see show a TSH and free T4 slowly being suppressed, both because of the exogenous T3. I highlighted the above labs because in these labs he tested total T3 and you will notice that it is nearly at the top of the range--I would be willing to guess that your Free T3 is quite high as well (although you don't know without testing it).
> 
> ...


These are what got me diagnosed:

_*9/5/2012	*

TSH 0.83 (0.10-5.50 uIU/mL)

*9/11/2012*

Free T4 1.1 (0.8-1.7 ng/dL)
TPO AB 262 < 35 IU/mL
_

This was the day I was finally diagnosed:

_*10/3/2012	
*
TSH 0.68 (0.10-5.50 uIU/mL)_

This was when he added my Cytomel:

_*12/13/2012	*

TSH 0.28 (0.10-5.50 uIU/mL)
Free T4 1.2 (0.8-1.7 ng/dL)
TPO AB 274 < 35 IU/mL_

The reason I want the other Ab's tests is because I've only had TPO and TSI done. I don't think it would hurt any to see what the others look like. It's like with my Free T3, he doesn't see any reason for me to have it done because it's internet hype. I would still like to have it done because I'm sure there's some benefit to having it. I mean he tests Free T4, why not Free T3?

The reason I go every 4 weeks is because I started at around 6 weeks and I asked if I could go in earlier because I was going on vacation when it was time for my first test and he said I could go in as early as 4 weeks if I wanted. So then I just stuck with 4 weeks.


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## lainey (Aug 26, 2010)

Antibodies are used for diagnosis, not treatment, and you have had the major ones run. Knowledge is nice, but what impact will it have?

T4 medications have a long half life, and take time to build up in the system. If he is not going to measure the free T3, ie cytomel, then perhaps you might want to go a little longer between tests, because once again, it leaves you chasing the numbers.

Your labs were not hypo on diagnosis. Were the meds supposed to be a trial to see if they made you feel better? If so, given the way you feel now, do you really think you need them?


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## xLeBeaux (Nov 10, 2012)

It's not about diagnosis or treatment. I just want to know about the TSH receptor blocking antibodies. It's for my own personal knowledge, thats all.

I'll wait the 6 weeks between tests, I do think thats a good idea. My meds were prescribed because I was so exhausted, I felt like I was dying. Plus I had gained a ton of weight without changing my diet. All I had to do was look at food and I'd pack on another 10 lbs. I had literally gained 70 lbs in less than a year. I've been a vegetarian for 22 years and I stay away from all the bad fatty/carb heavy foods. I was a healthy runner before this stupid disease took over. I'm just trying to get back to that. I want to feel normal again and feel good about myself. Being this heavy makes me so sad.

Before we added the T3 I was depressed and cried a lot. My boyfriend thought I was going crazy and so did I. Since adding the T3 I feel like my happy self again, no more depression. I'm way more level than I have been in a long time. So yes I think I need the meds.


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## iroczinoz (Aug 15, 2011)

I am of the opinion if he is treating you with cytomel then before giving it to you he/she should have checked your ft3 levels.

It just makes sense to test your ft3 levels before going on t3 medication in the first place. Because he/she certainly did not prescribe you cytomel because of your elevated tsh. So I wonder what made him/she prescribe you with t3 meds.

With your antibodies present your dosing should be done by looking at ft4 and ft3 levels. The doctor may as well save money and not worry about tsh test and just order the ft3 test. Why is it that difficult for him, I guess you are wondering the same thing.

I have gone from tsh 2 to 6 in the matter of 14 days and it probably changed a lot quicker than that. Since I have hashi's markers, in those 2 weeks it could have gone from 2 up to 10 down to .5 up to 6 etc... So dosing by TSH with antibodies present is not a very good protocol and really how can it be when it is constantly changing. Best way would be ft3 ft4 levels and how you feel.

Your weight gain may also be something else.

Have you had your cortisol checked?

Ever had your estradiol and progesterone checked? Best to get that checked around day 18 of cycle. Depending on your age your chances of being estrogen dominant are there. Check here as it has a list of the major symptoms see if you have a lot of them or not. Might be something to lok into if you feel there might be a case.

http://www.johnleemd.com/store/estrogen_dom.html

Vitamin D how is your level?

Ferritin/Iron levels checked?

Fasting Glucose checked?

Vitamin B12 since you are vegan this could be low.

If your endo is willing he might be able to check rt3 just another thing to tick off.

The problem is that you need a doctor who is willing to dig deep and look into your situation rather than rushing you out the door.


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## xLeBeaux (Nov 10, 2012)

I just saw the new endo and he said I'm fine and I'm not hypothyroid and I don't need meds. I just have Hashimoto's. He said I'm gaining weight and always tired because I'm just fat and depressed even though I'm not depressed. I told him I felt swollen and he said it wasn't swelling it was just fat. My other endo seems like a saint compared to this guy. 

Only good thing about this was he diagnosed me with TED. He said antibodies and Free T's don't mean anything and TSH is what needs to be looked at.


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## Sandbar (Nov 6, 2012)

Run away, run away!!!!!


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## CA-Lynn (Apr 29, 2010)

Yes....run.....FAST.


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