# NEW here & researching Hashi and Autoimmune - advice & input please...



## Leslie126 (Sep 2, 2010)

I am a 37 year old wife & mother of 1 daughter - loving husband, awesome happy life!
10 years ago I was pregnant & nodules were found on my thyroid.
After I gave birth (emergency c-section) they removed 1/2 my thyroid, but left the other 1/2 there with small nodules known - but said it was best.
Stayed on 25mcg daily of Levoxyl to simply keep my thyroid from shutting down.

In the fall of 2009 in a followup ultrasound they said all nodules on the existing 1/2 had grown. Got a new Endo & he is trying to increase my dose of levothyroxine to lower my levels to stop the nodules from growing.

Problem is the more he increases the higher my levels are going.. YES they are going up, not down. I am now up to 1.35 - granted still low, but he wants me at 0.05 ish.... I started at 0.8 & have simply gone up.

I am always tired, hands & feet always cold, menstral cycles are beyond heavy & hard (to the point that my GYN wants to simply do a hysterectomy), weight goes down 10-20 lbs & then back up w/no reason or changes in diet and my migraines are at their worst. (daily headaches too)

At the first appointment my new Endo said the symptoms had nothing to do with my thyroid that my levels are within range, he only wanted to lower my numbers to slow down my thyroid from working so hard so the nodules will slow down or stop growing.

After reading sooooo much on the thyroid due to frustration I found this board! Suggestions please! What tests to ask for???? Do I sound like Hashi or Autoimmune or am I grasping at straws?


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## Leslie126 (Sep 2, 2010)

No one out there has an opinion on my symptoms? No suggestions on what labs to ask for? Anything please... I feel like crap & seriously need to get to the bottom of this!

I am working 40 hours a week, coaching, parenting, taking care of my house (somewhat) and trying to be a good wife all with dealing with this! I just want to feel better...... any advice would be greatly appreciated


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## McKenna (Jun 23, 2010)

Hi Leslie and welcome.
Let me start by saying I'm not a moderator and certainly not an expert on thyroid, only having recently begun this crazy journey myself! But I will say that it's important for you to post your most recent labs with ranges and any other test results that you have had. Have you ever had antibody tests?


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## Andros (Aug 26, 2009)

Leslie126 said:


> I am a 37 year old wife & mother of 1 daughter - loving husband, awesome happy life!
> 10 years ago I was pregnant & nodules were found on my thyroid.
> After I gave birth (emergency c-section) they removed 1/2 my thyroid, but left the other 1/2 there with small nodules known - but said it was best.
> Stayed on 25mcg daily of Levoxyl to simply keep my thyroid from shutting down.
> ...


Long weekend for Labor Day and Hurricane Earl may be keeping posters away so when things calm down,others will be along.

That said..............

How much thyroxine replacement are you on now? Has this doctor run your FT4 and FT3 as well as TSH?

Has anybody done any antibodies' tests?

You could also be low in ferritin and if you are that would interfere with the efficacy of your thyroxine replacement.

Are you consuming goitrogens in your diet such as soy? Are you taking any supplements or meds that would interfere w/ your thyroxine replacement?

Are you estrogen dominant which would require way more thyroxine replacement?

Here are some tests and information for you.........

erritin http://www.thewayup.com/newsletters/081504.htm

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

Also, radioactive uptake scan (RAIU); sonograms have limitations.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

Welcome to the board.


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## Leslie126 (Sep 2, 2010)

Andros said:


> Long weekend for Labor Day and Hurricane Earl may be keeping posters away so when things calm down,others will be along.
> 
> That said..............
> 
> ...


I was just changed from 1/2 of a 125mcg tab to 75mcg this week. 
The only test that I have had recently is TSH. I do not know when the last time I have had a Free T3 or T4 done. Never had any uptake scans.

No other meds that I know of that will interfere, and never been told of anything else that I am low it.

I am however very frustrated that no other tests have been run, I guess I just didn't know what to ask for. I keep telling them I don't feel good - and all I hear is "its not related to my thyroid". I have nothing to prove it does... and they are the doctors - so I believed him.


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## Leslie126 (Sep 2, 2010)

McKenna said:


> Hi Leslie and welcome.
> Let me start by saying I'm not a moderator and certainly not an expert on thyroid, only having recently begun this crazy journey myself! But I will say that it's important for you to post your most recent labs with ranges and any other test results that you have had. Have you ever had antibody tests?


Thanks & I understand ... I just want advice & I can atleast have things to take back to my Endo for questions.
My only recent lab is that is a TSH - it is 1.38
no other tests have been done recently & I have never had an antibodies test. Never even heard of it before reading things on these boards.


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## chopper (Mar 4, 2007)

My guess is that your other half is dying off. That's very common.

Look at it like this. If you had a half an apple and you made apple juice, would you have more apple juice from that apple before or after you took a big bite out of that half?

You have a nodule that is probably not producing hormone and the nodule is growing in size. The bigger the nodule the less room for healthy, hormone producing thyroid tissue. Add to that you only have half a gland to start with so the half you do have is overworked and yes, my guess is that the other half is dying off, pooping out, giving up....etc....its quite common in folks who have had only half their thyroid removed, my own mother included.


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## Leslie126 (Sep 2, 2010)

nasdaqphil said:


> My guess is that your other half is dying off. That's very common.
> 
> Look at it like this. If you had a half an apple and you made apple juice, would you have more apple juice from that apple before or after you took a big bite out of that half?
> 
> You have a nodule that is probably not producing hormone and the nodule is growing in size. The bigger the nodule the less room for healthy, hormone producing thyroid tissue. Add to that you only have half a gland to start with so the half you do have is overworked and yes, my guess is that the other half is dying off, pooping out, giving up....etc....its quite common in folks who have had only half their thyroid removed, my own mother included.


So then - what happens if it dies? Do they have to remove it? more medication? do I feel better? Any clue?


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## Andros (Aug 26, 2009)

Leslie126 said:


> I was just changed from 1/2 of a 125mcg tab to 75mcg this week.
> The only test that I have had recently is TSH. I do not know when the last time I have had a Free T3 or T4 done. Never had any uptake scans.
> 
> No other meds that I know of that will interfere, and never been told of anything else that I am low it.
> ...


I have provided you with a very good list of tests to ask for and links to explain to you what the tests are all about.

Go for it! Knowledge is power.

We are here to help you if we can.


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## chopper (Mar 4, 2007)

It really all depends on what's going on. If the nodule is growing fast, it could mean cancer and if that were the case, they would yank it out. If they find the nodules harmless they may opt to leave them in and watch them carefully for growth and/or changes.

If the other half dies off it just doesn't function properly and can remain inside your neck without trouble. You would just have to adjust meds to compensate for the lack of production you used to get from the good half.

It really all depends on the exact situation. If you've got all kinds of lumps, bumps, bruises and nodules in there, they may want it out for fear of cancer and/or the increased chance of cancer. If they know for sure it's a harmless "dead spot" lump on your thyroid then they might just leave it alone and offer you a sonogram every 6 months to make sure its not growing.


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## Leslie126 (Sep 2, 2010)

Thanks guys, I really appreciate all the help & advice. Looks like I have a long list of test to ask the doctor for..... but if it gets to the bottom of things & helps me feel better - I am all for it!


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## Leslie126 (Sep 2, 2010)

Wanted to give everyone an update.... 
I emailed my Endo on Friday & requested the long list of labs... He sent me a script today!  The only thing he said was the Uptake Scan I need to be off thyroid meds for 6 weeks, so if I want that I need to stop & call to make the appt. 
Here are a few more questions I have: Do I wait to see what labs show? Do I get the uptake scan? Why do you have to stop meds? And what could this test show me on my thyroid? Help me understand this test please....
But so far very happy w/him - he didn't question me or deny me the labs & hasn't called me crazy yet either!!! LOL


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## lainey (Aug 26, 2010)

Is there a thyroid ultrasound in that list of tests?
You really want to start there, to see if there are structural changes, especially in the form of nodules.

Then, look carefully at the blood work--including the antibodies hopefully. This should give a better picture.

Considering the uptake scan. The idea of the uptake is to see if your thyroid is functioning by absorbing iodine as it should. Also, with in the thyroid, if there are nodules, functional nodules (those producing thyroid hormone) will take in more iodine, showing like "hot spots" on the scan. Usually, you do these as an initial diagnostic tool, to see if the thyroid is really not functioning (hypo--low uptake) or over functioning (hyper--high uptake).

If you are on replacement, the thyroid doesn't work on it's own and the test can't work, ergo the need to be off of T4 medication.

You can, with caution, make a couple of assumptions. The first would be that due to rising TSH, your remaining half thyroid is probably failing and you are becoming hypo--do you need such a scan to confirm this? Not necessarily, if your blood work is consistent. You might also be able to assume that, if you have nodules, they are likely not functional, because that would also show in your blood work as a falling TSH.

Considering that, I would wait on the scan until all of the other results are in. There is a kinder way to go hypo for it--your endo can prescribe T3 only medication (Cytomel) for you to take for 5 weeks or so before the scan. This you would discontinue about 10 days before the test, and then supplement the T4 with it after so you would spend less time hypo.


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## Andros (Aug 26, 2009)

Leslie126 said:


> Wanted to give everyone an update....
> I emailed my Endo on Friday & requested the long list of labs... He sent me a script today!  The only thing he said was the Uptake Scan I need to be off thyroid meds for 6 weeks, so if I want that I need to stop & call to make the appt.
> Here are a few more questions I have: Do I wait to see what labs show? Do I get the uptake scan? Why do you have to stop meds? And what could this test show me on my thyroid? Help me understand this test please....
> But so far very happy w/him - he didn't question me or deny me the labs & hasn't called me crazy yet either!!! LOL


You do have to stop your thyroxine (T4) but doc can put you on a low dose of Cytomel (T3 which is your active hormone) so that you don't have to crash and burn. You then have to stop the Cytomel about a week before your uptake scan.

I would get the labs first and I hope you share the results and the ranges so we can have a look. We need the ranges so try to get a copy for yourself. You should be keeping a folder anyway so you can track "things.!"


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## Leslie126 (Sep 2, 2010)

lainey said:


> Is there a thyroid ultrasound in that list of tests?
> You really want to start there, to see if there are structural changes, especially in the form of nodules.
> 
> Then, look carefully at the blood work--including the antibodies hopefully. This should give a better picture.
> ...


To start ... I had an ultrasound in the fall & in June of this year. And the nodules have increased, then decreased - but I just feel aweful!

I kinda thought I will just wait & see the blood results ... talk to the "experts" on here! LOL and go from there Thanks guys - you are really helping me make some decisions!!!


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## drahaskell (Oct 1, 2010)

I notice you are looking for information and for some answers. Some suggestions have mentioned getting your thyroid antibodies checked. This is absolutely the right direction to take....

I want to invite you to a free webinar I'm hosting on Hashimoto's, the thyroid autoimmune condition. I've been in practice for 27 years and published two books, one on optimizing thyroid hormones and the other on Hashimoto's. I'll be covering the medical research which shows the primary cause of this condition and several nutrients which lower thyroid inflammation and thyroid antibodies. I'll also cover the three thyroid prescriptions and how to use them effectively.

I hope you can join me. There will also be time for questions. Simply go to HopeForHashimotos.com for more info.

All the best, 
Dr. Alexander Haskell


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## CA-Lynn (Apr 29, 2010)

Haskell is a "naturopathic physician" who is selling his books/other materials.

Spam.


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## Leslie126 (Sep 2, 2010)

Well... the only test that came back off is a positive ANA titer of 1:8... and being referred to a Rhumatologist. 
No available appt until Nov 29th - let the waiting begin!


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## CA-Lynn (Apr 29, 2010)

Hang tight. Seems to take forever for those rheumatologist appointments.


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