# Just Diagnosed.. What now?



## Love2RunLong (Oct 21, 2014)

Hello! Just wanted to introduce myself.

I've suspected Hashi's for awhile, but was officially diagnosed today after TPO results and Ultrasound results confirmed it.

My question is, what now? What are the important steps to take from here? I just started Levo today for my hypo. I read that a diet change is usually a good thing as well. I am already gluten free because of Celiac, but still feel unwell all the time. How drastic did you go with diet? I read a lot about AIP and it's just SOOO limited, but I want to do anything I can to feel my best.

Just kind of overwhelmed with information.


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## joplin1975 (Jul 21, 2011)

I eat every single thing I ate before I knew I had thyroid issues. Sure, I have a decent diet anyway, but I still eat gluten and I love it. 

Focus on being compliant in taking the med (same time each day, with a full glass of water, on an empty stomach, no eating for an hour after, and avoid calcium and iron supplements for four hours after taking the med) and see what your next lab work looks like (which should be done at the six week mark). Adjust as needed and then wait six more weeks. Rinse, lather, repeat.


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## blablabirdie (Feb 4, 2015)

No idea, I'm in the same boat except for the gluten. But I actually cut that out a few months ago when my weight loss stagnated despite my intensive workouts.

I also love to run long, and hope to be able to do a bit more of that this spring. Signed up for a few 5 and 10ks to get going again...

As a vegetarian I am a little uncertain about soy. My doc said it doesn't matter, but he doesn't really seem very knowledgable about this.


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## Love2RunLong (Oct 21, 2014)

Thanks!

I do know that there are things that aren't helping. Sugar makes me feel bad, as does dairy and soy for sure. I think i'll work with a little bit at a time and see what happens.

I assume that I should have my TPO tested again as well?

I want to get back into running so much, but my legs feel like lead. Hopefully my Levo will help that!


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## joplin1975 (Jul 21, 2011)

I wouldn't worry too much about TPO. They usually run it only occasionally. The real important stuff is free t4 and free t3.

Running will get easier again. It takes a long time, but it will be back.


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## Love2RunLong (Oct 21, 2014)

I am calling an Endo today. My HR department told me that I don't need a referral, so I'm going to call. I'm not too comfortable with my doctor treating my thyroid as he doesn't care much about what I have to say.

I also contacted them to see if they could switch my Levo to Tirosint. I'm reading that a lot of Levo isn't gluten free, and with me having Celiac, I need to know my meds are gluten free, always. It appears that it's the same drug, just in a capsule with no dyes, colors, or filler/binders. This would work great for me.

I hope they get back to me soon.


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## Love2RunLong (Oct 21, 2014)

So when you are on medicine and you get checked to make sure it's working, what blood work should they be doing?

my PCP only gave me a lab slip for TSH. Nothing else.

I called this morning and made an appointment with an Endo, but it's not until 4/2.My follow up with the PCP is 3/17. I'd really rather not see him again, only to have more blood done 2.5 weeks later at the Endo. not sure what to do.


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## joplin1975 (Jul 21, 2011)

Blood work for medication monitoring should always include: TSH, free t4, and free t3*.

*Full disclosure, when my meds were off and I was getting blood drawn every month, my insurance company started to refuse to pay for free t3. Since my free t3 has always tracked closely to free t4 and since I consider myself stable in terms of medications, we usually run TSH and free t4 only to save me money.


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## Love2RunLong (Oct 21, 2014)

Why would insurance companies not want to do this? it's our HEALTH! it sounds like it's necessary to fix a lot of people! I still don't know what mine is, as it's never been tested.

What is your advice for the doc appointments?

All my PCP has done is told me I'm hypo/hashi's and put me on meds. I'm supposed to go back 3/17 after doing a TSH test. I'd rather just go to the Endo on 4/2.

Even though I've never been seen there, is the endo able to give me lab work slips so that she has what needs when I go in there? (assuming I skip the PCP) ?


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## joplin1975 (Jul 21, 2011)

Free t3 is expensive and at that point, I was so out of whack, it really wasn't telling us much (my TSH was 121 and free t3 was undetectable...there was no point in testing it until that TSH came way down and the free t4 came way up). There's also much speculation by many in the medical community about how valid free t3 is, so the insurance companies jump on that.

How long will you have been on your meds when you follow up with the PCP?


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## Love2RunLong (Oct 21, 2014)

I started the meds 2/6 so by 3/17 just about 6 weeks?

My mom (who goes to the same PCP practice and is on Levo) said that they have NEVER made her come in to the office to discuss the results. She said the doctor reviews the blood work and they call her and tell her they upped the dosage.

Because I've have a horrible time with my doctor, I'm thinking about getting the blood work done and then cancelling my appointment. I will tell them that my work will NOT let me take off. She thinks that if it it's abnormal, they will HAVE to act on giving me a higher dose to try and keep lowering my TSH and that he just needs to call it in. There really is NO need for me to come back into the office. If he does nothing, or says he cannot do anything without seeing me, then I guess I'll just wait another 2 weeks and follow up with my endo and i'll give her copies of the most recent blood work.

I know this might seem wrong, but this is the guy that told me when I was concerned about Levo not being gluten free that "the amount of gluten would be so small, that it would not bother me" and refused to write me a script for Tirosint. (I have celiac disease. ONE bread crumb comes with major consequences). I refuse to spend any more physical time with him. He doesn't listen and he's extremely arrogant.

My only fear that is that somehow after only 6 weeks of being on Levo that it will put my tsh in "normal range" and he will say that he's not doing anything further, but it not being at optimal!!. I had my TSH tested 3 other times over the last few years and it was always "normal" 2.5, 3.0, and then 4.5, and I felt SO BAD with all of these trips. I want my TSH to be around 1. I wonder if I'll have ANY push room with my PCP with this. All this fighting with doctors is exhausting.

I fear that my Endo won't be any better but I have to try, right?


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## joplin1975 (Jul 21, 2011)

Eh, I dunno know. I don't know what your PCP plans on doing, but if my doctor just looked at my labs and phoned in medication treatments? The first thing I would do is find a new doctor.

If you ask me, a doctor SHOULD call you into his or her office. It's not just about the lab numbers. It's also about your symptoms. They should be weighing you to see if there are any changes. They should be testing your reflexes for any delays. They should be listening to your heart, taking your blood pressure and heart rate to make sure things are going too hyper. They should be asking about bowel movements and digestion issues. They should ask how you are sleeping or if you have any anxiety. They should give you a once over to see if you hair and skin look good, to see if your nails are strong, to see if you have any bloating, etc etc etc.

Labs are half the picture, symptoms are the other half. Finding a doctor who will look at an integrate picture is the key.


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## Love2RunLong (Oct 21, 2014)

Okay, good point. I never looked at it like that, because I don't know. This is probably the problem with my practice to being with.

But I can tell you, they don't care about my symptoms. They never have.

Seeing what you said though, maybe I should go in. After all, it will be the last time I see him any way.


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## Love2RunLong (Oct 21, 2014)

I'm also a little peeved that the only test he requested was my TSH. That's it.

No FT4 or FT3.. just TSH. Boy, we will probably get far with that... :sick0012:


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## joplin1975 (Jul 21, 2011)

Yeah, I'm not saying he's the perfect doctor...all I'm saying is that regular visits are a sign of a good physician.


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## Love2RunLong (Oct 21, 2014)

I'm going to see my doctor today. I've been having chest pain/pressure since I started my meds and I've been down playing it thinking maybe it was my body adjusting.. but I'm kind of nervous about it. I also noticed yesterday on two different occasions that my nail beds were blue, and I'm getting sharp pains under my left rib cage.

I'm not sure we will find out much but at least I'm going to get looked it.


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## Love2RunLong (Oct 21, 2014)

Okay, so doc determined my issues to be an adverse affect of the Levo. He told me to stop taking for one week and then start taking half a pil every other day. After that, I am supposed to take 25mcg (half a pill) every day until I see him again. He said if I have the pressure again, I need to call. EKG in office was normal.

Got my TPOab test back and it was *965.2*

here are my US results:

Right Lobe (cm) 5.0 X 1.7 X 1.8

Left Lobe (cm) 5.2 X 1.4 X 2.0

Findings: Color flow and grayscale imaging of the thyroid was performed. The thyroid is diffusely heterogeneous and slightly hypervascular. A discrete nodule is seen.

Impression: Diffusely heterogeneous and hypervascular thyroid consistent with thyroiditis. No discrete nodule seen.


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## Swimmer (Sep 12, 2013)

Today - there are numerous accounts of people with hashimoto's either reversing their disease, getting into remission, or being able to dramatically improve to the point that their physician lowers their thyroid hormone. It doesn't matter if people argue that you can't; -- it is being done over and over. I've read about it, talked with people, it is happening - certainly not for everyone. Even my endocrinologist agrees that "for some" it is possible. Isabella Wentz "the Root Cause" is the work that's been done for us -- the pharmacist who got hashimoto's and reversed it -- she helps us to learn how to dig at our own root cause and more -- I highly recommend that book. Many people are having success at getting into a better place with their hashsimoto's (including remission) -- it takes time. I expect the reversal to take nearly two years from what I'm hearing/reading depending on the person. At the end of the two years if I haven't reversed it -- I expect to be much better -- unless my thyroid has other things going on -- then I will know that I gave it my best and did all I could to try to acheive remission/improvement.


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## jeremy188 (Feb 19, 2015)

Don't get too wrapped up in Labs. Its all about how you feel on the meds. If my TSH is 5.0 and my Free T3 and T4 are in the normal range I won't let a doc bump my meds up one single microgram. I am my own best advocate in this game, not the doctors. If I feel fine in real life and it doesn't match up on paper, who cares? I feel fine, and thats all that matters!


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## Love2RunLong (Oct 21, 2014)

I agree with that, but I know I feel bad even at 3!

I've been going for years complaining of things I am pretty sure were thyroid related by my TSH was always "normal". Even at 3, I was at the doctors because I felt like crap.

My last labs like two years ago were at 4.5 and they said "You're fine!" I think I'm going to be one of those that feel better around 1 or so, but given that I'm at 7.8 now, we'll see how I feel once I'm back on my meds again.


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