# Update with labs - need some help



## Enigma (Jun 13, 2011)

I had labs drawn on Thursday for TSH, FT4 and TT3 (the doc wanted TT3 which was more than my other docs had wanted so I didn't argue).

Here are my past labs (from my signature)

*May 2011 (first Dx) *
TSH 15.4 (.4 - 4.0); FT4 0.8 (0.7 - 1.9); 
*Started .05mcg generic levothyroxine*

*July 2011 (2nd labs) *
TSH 6.85, FT4 1.0, TPO 869.7 (0.0-9.0); 
*Increased to .075mcg & switched to Levoxyl*

-Didn't have any labs done while on .075 mcg Levoxyl at that point

*Sept. 2011 New doc switched Armour 90mg* 
VERY sick; TSH was .042 (.4-4.0); FT4 1.1 (.7-1.9); FT3 4.1 (2.8-5.3)
*
Switched back to .075mcg levothyroxine at the end of September due to stomach problems on Armour*

*Labs from Nov 2011 (back to .075 mcg levo)* - note the different ranges

TSH .92 (.34 - 4.82)
FT4 .87 (.59 - 1.61)
TT3 1.4 (.7-1.9)

Had a TSI drawn but is not back yet. Hoping it will be later today.

I feel horrible (NO energy, completely foggy brain, horrible aches and pains, thyroid is tender, extreme emotional ups and downs, extremely dry skin, exhausted beyond belief). At some points I feel very jittery and anxious, and others just brain dead and exhausted. I feel jittery soon after my thyroid feels swollen and tender for a few days.

Why isn't my T4 going anywhere?? That seems really weird to me. And what does TT3 have to do with FT3 and dosing T3??

My doctor has given me the following options and wants me to choose what I feel is best:

1. Start on Westhroid. She has had patients do much better on that than on Armour.

2. Compounded T3/T4, presumably porcine derived

3. Add synthetic T3 to the mix rather than switching to porcine derived. However, she said that Cytomel's lowest dosage is 12.5mg and that may be too much? I thought that Cytomel started lower than that (I thought I usually saw people starting around 5mg or 2.5mg?).

4. Add synthetic at 12mg and lower Levo to .05mcg.

I am not sure what to do. I am very hesitant to go back to an Armour-like med since I did not do well. She did say that she thought I didn't do well because my dose was probably too high too soon. I had another doctor tell me that anyone with Hashimoto's should not be on Armour since it will set the antibodies off to go after the pig thyroid tissue in the meds. I am not sure if this is true, and if it is, if that is what made me sick? However, I don't want to add TOO much Cytomel and throw things off again.

Just not sure what to do at this point. I appreciate her giving me a lot of freedom, but kind of would like a little more definitive suggestion, you know?

If anyone has any thoughts, or things that might be important to consider, I'd really appreciate it!!


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## lainey (Aug 26, 2010)

Has it even been 4 weeks since you switched back to levothyroxine?

I think you need to stop changing medications and stick to one thing for a while. There is lag time with all of it, and you start over with the titration process every time you add something new. I would stay on this dose of this medication alone for at least another 6 weeks and let things settle out.

If you have TSI, you likely won't do well on T3 medications of any type. It could also interfere with T4 only medications, so we need to see that result.


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## Enigma (Jun 13, 2011)

lainey said:


> Has it even been 4 weeks since you switched back to levothyroxine?
> 
> I think you need to stop changing medications and stick to one thing for a while. There is lag time with all of it, and you start over with the titration process every time you add something new. I would stay on this dose of this medication alone for at least another 6 weeks and let things settle out.
> 
> If you have TSI, you likely won't do well on T3 medications of any type. It could also interfere with T4 only medications, so we need to see that result.


It has been 6 weeks (at the blood draw time) since changing back to levo .075mcg.

I told my doctor that I am not willing to change meds right now. I would be willing to try adding Cytomel, but not changing to natural or changing my dose of T4. She did call in a Rx for Cytomel 5mcg, but I may or may not take it.

I am hoping the TSI will come back today. It will throw a huge wrench in things if it comes back with anything. But I would not be surprised one bit if it does.


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## Andros (Aug 26, 2009)

Enigma said:


> I had labs drawn on Thursday for TSH, FT4 and TT3 (the doc wanted TT3 which was more than my other docs had wanted so I didn't argue).
> 
> Here are my past labs (from my signature)
> 
> ...


The lowest dose available for Cytomel is 5 mcg..
How Supplied
Cytomel (liothyronine sodium) Tablets: 5 mcg in bottles of 100; 25 mcg in bottles of 100; and 50 mcg in bottles of 100.

5 mcg 100's: NDC 60793-115-01

25 mcg 100's: NDC 60793-116-01

50 mcg 100's: NDC 60793-117-01

Store between 15° and 30°C (59° and 86°F).

Prescribing Information as of March 2004.

Manufactured by: King Pharmaceuticals, Inc., Bristol, TN 37620

Right out of the gate, I have lost confidence in your doctor.

Out of all the labs you have had, the ones on Armour happen to look the best. I don't know why you were so sick at that time.

Total T is bound, unbound and rt3 (reverse T3) hormone so I fail to see a value in that test.

Let us know what you decide to do. I wish for you to feel better.

Don't have your history available; you have had an ultra-sound of your thyroid, correct?


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## bigfoot (May 13, 2011)

The Cytomel I tried was dosed in 5 mcg pills. They were not pre-scored, so I used a pill cutter to turn them into 2.5 mcg when the 5 mcg seemed too strong. In the end, even the 2.5 mcg was very strong and I went back to straight levothyroxine.

My endo originally wanted to start me on a much higher dose and ratio of Levoxyl with Cytomel. But when we realized my pulse was still pretty high we decided to "trial" the 5 mcg on top of 88 mcg of Levoxyl. Hard to say how you'll react to it. I have a relative who has Hashi's and had their thyroid removed years ago -- recently adding Cytomel has been awesome for this person. But then again, they have no thyroid and thus probably minimal conversion of T4 to T3, as I understand it (and I may be wrong). I tried Cytomel and might as well have been drinking 20 espressos.

Glad you were able to get a TSI test drawn! One way or another, it'll be nice to have a bigger picture of what's going on.

Okay, enough of my newbie banter, back to the experts...


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## Enigma (Jun 13, 2011)

Andros said:


> Right out of the gate, I have lost confidence in your doctor.
> 
> Out of all the labs you have had, the ones on Armour happen to look the best. I don't know why you were so sick at that time.
> 
> ...


Why do you say you would lose confidence in the doctor? I am a little leery of her kind of haphazard trial and error approach, but she didn't put me on Armour, it was a different doc at a different clinic. And that doc was WAY hands off and wasn't concerned about any side effects I had. Did not feel comfortable with her.

Labs looked good on Armour, it just threw me for a loop. It was horrible. But, I was not being treated for low adrenals at the time, so I think that threw in a whole other variable. Those are now being addressed so I *bet* I could handle Armour, but just not willing to try it, or any other NDT, right now.

Mentally I felt better within days of taking Armour - didn't feel as low and depressed-ish, and had much more energy. Just couldn't take the side effects or the dramatic increase in "normal" that my stomach and body couldn't keep up with.

I am going to try to get her to do a FT3 next time. Not sure why she prefers TT3.

I have had an ultra sound, back in August, and it said (to quote)

"Findings: 
Thyroid gland normal in size. Right lobe measures 3.6 cm and left lobe 3.8 cm in length. The gland is very heterogeneous. In the left lobe there are two small nodules measuring approximately 4mm. There are no calcifications. The isthmus is not thickened.

Impression:
Heterogeneous thyroid gland is nonspecific findings. Certain phases of thyroiditis can give this appearance. Incidental not of two 4mm thyroid nodules in the left thyroid lobe."


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## Andros (Aug 26, 2009)

Enigma said:


> Why do you say you would lose confidence in the doctor? I am a little leery of her kind of haphazard trial and error approach, but she didn't put me on Armour, it was a different doc at a different clinic. And that doc was WAY hands off and wasn't concerned about any side effects I had. Did not feel comfortable with her.
> 
> Labs looked good on Armour, it just threw me for a loop. It was horrible. But, I was not being treated for low adrenals at the time, so I think that threw in a whole other variable. Those are now being addressed so I *bet* I could handle Armour, but just not willing to try it, or any other NDT, right now.
> 
> ...


I said that because she does not know the available doses of a drug she is willing to Rx.

Are you feeling better now that the adrenals are being treated?

Thank you for the refresh on your ultra-sound. I "thought" you had one but just could not remember. Well, there is nothing scary there. It is not a healthy gland though. Thyroiditis and Hashimoto's are used interchangeably.

That is a relief but you should repeat once a year. Did doc say?


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## Enigma (Jun 13, 2011)

Well, then, TSI just came back, marked as high.

Mine: 3.7 
Range <1.3 (not sure if I wrote that right, less than 1.3)

Well, shoot, I knew it. What to do now?


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## Andros (Aug 26, 2009)

Enigma said:


> Well, then, TSI just came back, marked as high.
> 
> Mine: 3.7
> Range <1.3 (not sure if I wrote that right, less than 1.3)
> ...


That certainly solves the mystery as to why you cannot tolerate any thyroxine replacement.

I'll bet you are glad you pressed for the test? That paints a whole new picture.

Has your doctor commented yet? As you know, you should not have any TSI.

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

You probably have TBII as well.

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

LHM (Lord have mercy!) I am not at all surprised. Not at all.


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## Enigma (Jun 13, 2011)

I am glad I pressed for the test... though it was a psychiatric nurse practitioner that finally ordered it. Doc hasn't commented, but when I mentioned it to her at my appointment two weeks ago she said she didn't know of anyone with both antibodies or what to do if they were present.

What does one do in a situation like this?? I am obviously having problems from both ends of the spectrum, so can't really take meds completely for either. But what type of doc would be the best? Or the best solution?

I read nasdaq's story and it is scary. I can't be going up and down like this all the time.


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## lainey (Aug 26, 2010)

The answer would be block and replace or thyroid ablation.

Most docs in the US won't do block and replace, which is where you take an antithyroid drug along with thyroid replacement.

Some docs will just want you to ride it out--but your numbers will swing depending on the competing antibodies.

Either way, you do not want any T3 medication in this situation. You'll be lucky if you tolerate T4 for too long before your numbers swing back.

You need an endo, all of your test results and a plan. With the TSI high, you have a good case for ablating the thyroid. If memory serves, don't you have a fairly reasonable GP in your corner? They may be of some help getting a little action for you on this.


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## Enigma (Jun 13, 2011)

lainey said:


> The answer would be block and replace or thyroid ablation.
> 
> Most docs in the US won't do block and replace, which is where you take an antithyroid drug along with thyroid replacement.
> 
> ...


I have called the endocrinologist that I saw once and am hoping to schedule an appointment with him (had once for January, but obviously need it sooner!).

The doc that was treating the thyroid just sent me an email and told me that she isn't familiar with this, doesn't know how to treat it, and wouldn't even be sure whether I should take Cytomel or not. I am not going to take it at this point, I am not going to change a thing with my meds until I talk to the endo. But it looks like that doctor is gone since she was going to be the one to work on the hypothyroidism.

I am starting with a new PCP due to my previous one being incredibly rude, and not paying attention to any of my symptoms. It was like pulling teeth to get him to check TPO, and he said it didn't change how he thought/treated anything. He was the one who referred me to this endo mentioned above, so he would still send me there anyway. So with seeing that endo, I should be covered since that PCP wasn't willing to look further than hashimoto's/anxiety anyway.

Hopefully the endo will be familiar with this or have some idea what to do. I have my psychiatric nurse practitioner able to speak to how I present clinically with anxiety/emotional fluctuations (i.e. more emotionally dominant hyper than hypo) so that may help as well.

Now I feel like an idiot for playing around with meds and doctors so much, but no doctor even mentioned this. I just got so tired of feeling up and down that I asked the other doc, psychiatrist, to do the test. I would have been still going up and down without any doctor looking at the elephant in the room! Just anxious with a touch of hypothyroidism!

This explains my emotional swings since high school, and why they have become much closer together since starting thyroid meds. It would also explain sudden weight loss in HS, and then sudden weight gain, then weight loss again this year, heart palpitations, but also depression and foggy brain. And anxiety all throughout the whole time.

I am not sure whether to be happy about this or hopeless.


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## northernlite (Oct 28, 2010)

Enigma - although you have to unfortunately live this, it is quite an education for all of us on how this can play out. The science is there, you were not responding as expected to thyroid replacement medications and there is a real reason. And the lack of medical understanding by your doctors is incredible. You solved the mystery yourself.

I doubt you will feel well on any combination of medication. If I was in your shoes, I would be researching and choosing chemical or surgical ablation of my thyroid and then begin a course of thyroid replacement hormone which will actually work for you this time!

Best of luck to you in the journey.


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## Enigma (Jun 13, 2011)

Endo just called and told me TSI is a waste of money. it means nothing and people with hashi's have it. told me i must have other problems. that i could go off medicine to prove to myself that i need medicine. i told him if this is how people live while being medicated it's a joke. told me that i had 3 other tests at the same time that proved i need to be on hypo thyroid meds and that it must be a coincidence that i have been having problems since starting thyroid meds. just told me to have my labs drawn again.

i want to give up. he made me feel like i was crazy. i have had the mood side of things worked on for the past 10 years without major problems. it has all become worse since june and starting thyroid meds. he didn't care.


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## bigfoot (May 13, 2011)

*sigh* Big hugs3 headed your way!

No such thing as a "coincidence". Everything happens for a reason. You are on the right track!


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## Enigma (Jun 13, 2011)

I just don't know what to do at this point. I can't live my life like this. I am spiraling down and down but no one will listen.

I don't even know where to go from here.


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## Andros (Aug 26, 2009)

Enigma said:


> I am glad I pressed for the test... though it was a psychiatric nurse practitioner that finally ordered it. Doc hasn't commented, but when I mentioned it to her at my appointment two weeks ago she said she didn't know of anyone with both antibodies or what to do if they were present.
> 
> What does one do in a situation like this?? I am obviously having problems from both ends of the spectrum, so can't really take meds completely for either. But what type of doc would be the best? Or the best solution?
> 
> I read nasdaq's story and it is scary. I can't be going up and down like this all the time.


I certainly agree w/Lainey!! If it were me, I would get rid of that sucker and get on track. Get my life back.

If I could do it over, I would never ever have wasted 2 years on anti-thyroid meds; I kid you not. I would go straight on to ablation.


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## lainey (Aug 26, 2010)

Obviously you won't stop at that endo. That doctor is obviously not familiar with thyroid issues.

You're going to have to find a doc that will look at your results and test it all again. Try a teaching hospital, look for a thyroidologist or someone who lists thyroid disorders first.

It may take some doing. You need someone to acknowledge that just because your last labs were in the hypo phase that the TSI does matter--it IS, after all, how they diagnose Graves, and people with just Hashi's don't have it--people with hashitoxicosis do. It is unusual, but not impossible and it may take some seeking to find someone to deal with it.

There is a small thread on here about it if you look in the main board--there are others who have posted.


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## Enigma (Jun 13, 2011)

Update:

The only bright spot is that my dad is ****ed (he's a pediatrician) and can't believe the endo. So he started calling around to other endos today and found one that said he will take a fresh look at everything and said that autoimmune thyroid issues can set off a whole set of other problems. He was interested in my case and agreed to see me. He also works at a research center/teaching hospital, so hopefully he will at least be a bit more aggressive in testing so he can "teach" others. If nothing else, at least it will be a new look at everything. And he will know that he will have to explain things to my dad, rather than just some random person who supposedly doesn't know anything about medical stuff. He kept asking my dad questions like, "Did she get this test and this test?" (which apparently I hadn't). He talked about how it might a multiple-endocrine immune problem, and I should get ACTH testing given my crazy salt cravings, etc. I'll get hopeful/excited once I find out if he can actually LISTEN to me and get past any perceived "anxiety". I hate doctors, and always have. I never go to the doc, I've always just called my dad when I've had colds so I don't have to bother a doc. And I only go in for regular physical/exams. Do they really THINK that I want to spend all of my time there??


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