# Felt better-now levels going back up?



## Serendipity (Jul 5, 2011)

I was newly diagnosed as Hashi's in January of this year. I've been on Levothroid since then and started to feel much better. I am lucky because my doc will let my levels get down past 1 and that is where I felt the best. Recently I've had my symptoms come back with a vengeance so I went in for a re-check and my TSH has doubled in the last month. It is certainly within the 'normal' range, but I feel the same way I did before any medication. We are also keeping an eye on my thyroid as I have a goiter and 2 nodes that she is looking at. One changed between my January and April appointment, so I am going back in in October to see if there are any more changes (she did the scans in the office so I have no idea on size or makeup of the nodes).

Here are my lab tests so far:
Range:

1/25/2012 TSH 3.97 (.10-3.0) Free T4	1.0 (0.8 - 1.7)
2/24/2012 TSH 1.91 (.10-3.0) (50 mcg Levothroid)
4/27/2012 TSH 1.94 (.10-3.0) (50 mcg Levothroid)
7/27/2012 TSH 0.77 (.10-3.0) (88 mcg Levothroid) <-felt great!
8/28/2012 TSH 1.50 (.10-3.0) (88 mcg Levothroid)

TPO AB	>1000	(< 35 - )

Any ideas why I feel so yucky and my levels are going back up? Is it too little of a change to worry about? I am going to ask for a Celiac test at my next appointment as my grandfather had it and my sister was just diagnosed. I don't want to go gluten free until I can get tested.

Thanks!!


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## Andros (Aug 26, 2009)

Serendipity said:


> I was newly diagnosed as Hashi's in January of this year. I've been on Levothroid since then and started to feel much better. I am lucky because my doc will let my levels get down past 1 and that is where I felt the best. Recently I've had my symptoms come back with a vengeance so I went in for a re-check and my TSH has doubled in the last month. It is certainly within the 'normal' range, but I feel the same way I did before any medication. We are also keeping an eye on my thyroid as I have a goiter and 2 nodes that she is looking at. One changed between my January and April appointment, so I am going back in in October to see if there are any more changes (she did the scans in the office so I have no idea on size or makeup of the nodes).
> 
> Here are my lab tests so far:
> Range:
> ...


Probably those high TPO Ab are doing this. Are you scheduled for FNA (fine needle aspiration) of one or both of those nodules?

Your doc maybe should run Thyroglobulin Ab as well.

TPO Ab should be negative, 0
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm
(The normal thyroid has TPO but should not have antibodies to TPO)

Thyroglobulin Ab
A negative test is normal. A negative test means no antibodies to thyroglobulin are found in your blood.
http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm
(The normal thyroid has Thyroglobulin in low titers but should not have Thyroglobulin Ab)

Has your doctor not run your FREE T4 and FREE T3?

It's a real bummer to be feeling so well and have this turn around on you. I think antibodies are doing a number on you.


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## Serendipity (Jul 5, 2011)

Thanks for the response! My doc only tests TSH after the initial visit unfortunately. I think the plan is to do the FNA after my next appointment if she sees any changes in the nodes. I have a feeling that my body is in attack mode lately because I get a sore throat whenever I am fighting off an infection, and have had one for the last week or so.


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## Andros (Aug 26, 2009)

Serendipity said:


> Thanks for the response! My doc only tests TSH after the initial visit unfortunately. I think the plan is to do the FNA after my next appointment if she sees any changes in the nodes. I have a feeling that my body is in attack mode lately because I get a sore throat whenever I am fighting off an infection, and have had one for the last week or so.


Are you sure the sore throat is from an infection?

You are welcome; if we can do a good deed, we are happy to do it!!! Passing it all forward is the name of the game!


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## CA-Lynn (Apr 29, 2010)

TSH test by itself is pretty worthless. I suspect this is not an endocrinologist you're seeing. If true, make an appointment with the specialist.


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## Serendipity (Jul 5, 2011)

Unfortunately it is an Endocrinologist. I have insurance through Kaiser and they are very set in their ways on how they go about things. I e-mailed her and she is offering to up my Levothroid level to 100mcg.


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## Keba (Aug 11, 2012)

I agree that it's the elevated antibodies.
Will your Doctor adjust your meds at this point or do they want to wait for the next set of tests?

I'm playing the waiting game right there with you. In October is when I get everything re-checked, and now thanks to everyone on this board I know what tests to ask for.

Is sure is hard and it seems like it gets much worse as time goes by.
I hope you get some answers soon!


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## Serendipity (Jul 5, 2011)

Why do doctors want to make Thyroid patients feel stupid??? Here is a quote from her response on my sudden recurrence of symptoms:

"If you don't feel better you may want to reconsider whether your symptoms are thyroid related."

Really?? I felt great when my TSH was .77, now it has doubled and I feel exhausted, headachy, hair falling out again, constipation, etc. EXACTLY how I felt before I was on any medication. Am I going to get the 'you are depressed' talk again even though I don't feel depressed? What else could make me have Hypothyroid symptoms??

She is a young Endocrinologist, shouldn't she see more than the old school TSH is everything point of view???

Sorry-just feeling frustrated yet again with this whole process.


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## CA-Lynn (Apr 29, 2010)

Wow - I'm really surprised. I would have thought the more recently certified specialists would have a better handle on the population experience.

I understand where you're coming from. I must say that I feel my best when my TSH is between .01 - .40 - no kidding. That might freak out some old time doctors because it's not within the stupid normal range that SORELY needs to be modified.

While I recognize that many people aren't in a position to change their insurance carriers, for those who have non-PPO plans, consider bearing the extra cost to switch to a PPO plan. Doctors who are PPO providers tend to be more amenable to testing and getting to the bottom of things and are not stuck with a bunch of guidelines that serve to make a profit for the insurance company. October-November is traditionally "open enrollment" period for those who have insurance through their employers.


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## Gwen1 (Sep 3, 2011)

Serendipity: Just be the squeaky wheel. "Constipation" is a good word to use with the endo's as that is a sure hypo symptom to them.
Your description sounds like typical hypo symptoms. 
It could be that your body is ready for another increase. It's part of the titration process.
100 mcg. is the next dose up.

Something I don't understand is why are they not monitoring your Free T4 levels? It is important look at the Ft4 levels along with the tsh. Most every doctor and endo runs those tests on thyroid patients.


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## SFLHashi (Mar 5, 2012)

Serendipity said:


> Why do doctors want to make Thyroid patients feel stupid??? Here is a quote from her response on my sudden recurrence of symptoms:
> 
> "If you don't feel better you may want to reconsider whether your symptoms are thyroid related."
> 
> ...


I feel the exact same way. As soon as I got under 1.0 tsh i was walking on sunshine I am a huge hashis. Most of the time. > 1500.

See my post "iPhone battery". In this forum.

As your thyroid gets crushed more and more by hashis. You will need more t4. I know I have gone from 125mcg to 187.5 mcg in 2 years.. I get my tsh and free T's done every 90 days.


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## sjmjuly (Mar 23, 2012)

Stupid Kaiser doctors,,,,,I go to my just so I can get my labs done and I am treated by a naturopath. Just had my labs done and my TSH is 0.09 with my free's in the normal range. Kaiser doc just about had a heart attack with the TSH. But what most of them don't get is people with Hashi's feel better with a very low TSH and frees in the normal range. At least I know I feel better.


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## Serendipity (Jul 5, 2011)

Thanks everyone. I'm on 100 mcg now and feeling better. I got an endoscopy today to look at my throat and check on celiac. He saw lots of swelling of my esophagus and took tissue for biopsies (throat and lower intestine). I'll ask why she doesn't test for free T4 at my next appointment, though I'm sure I will get the runaround about it. I am hoping for a clean ultrasound because after this appointment I will be looking for alternative ways to treat this since my doctor seems to be living in the dark ages


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## Andros (Aug 26, 2009)

Serendipity said:


> Thanks everyone. I'm on 100 mcg now and feeling better. I got an endoscopy today to look at my throat and check on celiac. He saw lots of swelling of my esophagus and took tissue for biopsies (throat and lower intestine). I'll ask why she doesn't test for free T4 at my next appointment, though I'm sure I will get the runaround about it. I am hoping for a clean ultrasound because after this appointment I will be looking for alternative ways to treat this since my doctor seems to be living in the dark ages


Well, thank goodness you are on thyroxine replacement! It would not have been too long but what you would have gone into hibernation.


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