[amosmcd]

#1059641

My primary care doc recommended an endo, the same one a friend from work recommended. I made an appt today, but she doesn’t have openings for new patients until mid-March. I’m on their cancellation list, but if I’m so worried that I can’t take MMI, am not getting my symptoms controlled on the PTU (could be a dosing issue, won’t know til yesterday’s lab results are known) and I feel awkward going back to the endo I’m trying to switch from, knowing he will stay on his RAI path, when I’m on the TT path. I did find out my ENT does thyroid surgeries, so I will call his office and find out how many he does a year, but if not enough I have to find someone else to talk to (I’m just in the info gathering phase of TT, haven’t made a decision and my current endo will not give me the name of a surgeon.)

Meanwhile, I woke up this morning with my left upper eyelid swollen, like it had been when I was hyper this summer. It had gone away over time without me realizing it until this morning. Now I’m quietly freaking out. Does this mean TED?? Does this meant the PTU isn’t working at all?

I feel like I’m stuck between an endo I’m ready to leave and the new one I can’t see and decide if she’s the one for me.

Just took my morning dose of PTU (I’m on an evening shift work schedule so my mornings are later than most people’s.) Maybe that will help. Also going for a walk. I’ve missed a lot of walks due to bad weather and no treadmill, but today is sunny.

Thanks for listening and for any suggestions. When I get like this, my brain shuts down (it’s been doing that a lot lately!) and can’t reason with myself.

Amy

[Bella1]

#1176404

Amy,

I’m going thru the same thing with meds, being newly diagnosed, and everything feeling out of control. I haven’t gotten mine figured out yet, so all I can tell you is the same thing I’m telling myself. Hang in there and we should be able to get something figured out soon, if we keep fighting for answers.

I wish you the best and hope it helps to know that you are not alone.

[Kimberly]

#1176405

Hello – Having your primary care doc make the call *directly* to the endo’s office can sometimes help cut through the red tape.

In the meantime, it seems like it wouldn’t hurt to try and get in with your current endo (or even your primary), just for an evaluation of your labs.

As for the eye issue, it would be helpful to get in with an experienced ophthalmologist. Swelling *can* be a sign of TED, but there can also be other causes such as allergies, infection, etc. — so you definitely want to see a professional who can give you some more direction on this.

Take care!

[adenure]

#1176406

I agree with Kimberly. When I was referred to the endo., I had to wait for a month or so I think it was. I was hyper and my primary wouldn’t prescribe the ATD’s. My labs showed hyper, but bc she thought it might be postpartum thyroiditis instead of Graves (which it wasn’t), she wouldn’t prescribe the meds. I called everyday a few times a day for an appointment, but no luck. I was really sick, so I told my primary I was losing a pound a day (which was true), not able to eat- food made me sick, gag, and my milk supply (I was breastfeeding) wasn’t as good, elevated heart rate, diarrhea. Basically I said, “I NEED to get in there!” And, I asked for an emergency referral. The endocrinologist called that day and saw me within the week. So, I would definitely try that route. It could work.

[vanillasky]

#1176407

Same thing happened to me. I had an appointment on March 13 but feel so sick, I wanted to go sooner. They put me on cancellation list and low and behold, I get a letter in the mail telling me they are changing my appointment to March 20!

I don’t think they take Graves’ seriously………………sorry:(

[Khadijah]

#1176408

Same thing with me. I had to wait to see my original endo like 2-3 months. I found another endo in the meantime just to get started on the Meds. I kept my original endo as a precaution in case the temporary one was not so good. And boy am I glad I did. The one I had to wait for was amazing, which is why the long wait for new patients. Once I saw him I didn’t have problems scheduling follow-up visits.

[amosmcd]

#1176402

Hi, Kimberly,
Do you mean help with labs or help getting into the new endo sooner? I saw an ophthalmologist this past Fall about the eye swelling, but he had never seen a pt with TED. So I’d have to find one that does. My insurance just started charging a $50 co-pay every time I see a specialist, so Graves will be pricey for me this year! 😮

Amy

[amosmcd]

#1176409

Forgot to say that I will see my current endo if I have to before the appt with the new one. It’s just that I’ll be spinning my wheels, because he is not who I plan continuing with. There’s not much else I can do, but I will call my primary to see if she can do anything to get me into the new endo sooner.

Also when I saw my primary Weds and although they drew some labs they didnt draw the thyroid labs! So went in today before work. My endo will call me tomorrow with the results if they’re ready. I asked the lab tech to check with the endo to see if they can be run stat. Hopefully he said yes.

Isn’t it funny, I guess it’s only been 4 month since my diagnosis (although bad hyper symptoms for about 4 month before that) and I feel like I’ve been dealing with the endo and meds and symptoms for a lot longer. I need to learn patience. Hard to do when feeling hyper.

Thanks for everyone’s input and advice. This forum has such a great bunch of helpful and supportive folks.

Amy

[Kimberly]

#1176410

amosmcd wrote:

Hi, Kimberly,
Do you mean help with labs or help getting into the new endo sooner?

Both! But it sounds like you’ve got the lab piece covered for now.

And even if you don’t plan to continue with your current endo, it’s good that you have an appointment at least for one final dosage adjustment before you make a change.

Take care!

[amosmcd]

#1176411

Thanks for the clarification, Kimberly. I’ll call my primary on Monday and and see if she can get me in sooner.

My endo called me at 8:30am this morning with my thyroid lab results:

TSH: 1.4
FT3: 2.4
FT4: 0.69

So they are normal–that is a huge surprise! He is not sure what’s causing the anxiety, but thinks the monthly ups and downs from hypo to hyper are not doing my body any favors and the anxiety and palpitations could be a residual effect from being hyper. He wants to see me in a month to go over another set of labs. In the meantime, he’s cutting my PTU back to 50mg twice a day, and wants me to start on a beta blocker (Atenolol) to see if that will ease the anxiety and palpitations. He did wonder about psych effects with the anxiety (because I’m on an anti-depressant and Klonopin) but I told him I’m very stable, no depression, and I only take 0.5mg of Klonopin at bedtime for leg spasms for my back. I had been on Flexeril for that and the psychiatrist who manages my meds didn’t want me on that. That was over 10 years ago. I only see the pyschiatrist every 6 months for med management. So the endo didn’t make an issue of it. I normally have no problems with anxiety, have never had a panic attack, (unless you sort of count that one day last week) so I’m glad he didn’t try to make this a psych issue.

Of course, I’m going to probably go hypo now on the PTU like I did with the MMI, to the point where he had to stop it, but maybe he can regulate the PTU a little better. This is why he wants me to have RAI and I do want to stop these swings, but again, I’m leaning more toward surgery, which he’s against.

Thanks again for all the support. This Graves is certainly a challenging and aggravating disease.

Amy

[catstuart7]

#1176412

amosmcd wrote:

My endo called me at 8:30am this morning with my thyroid lab results:

TSH: 1.4
FT3: 2.4
FT4: 0.69

Hi Amy, do you have the ranges for these results? According to the lab ranges for mine, from three different labs, your FT4 is below the bottom cut off for normal and you would be hypo right now. Anxiety and palpitations are common hypothyroidism symptoms. I am so glad your endo has reduced your PTU dose for you.

[amosmcd]

#1176413

catstuart7 wrote:

amosmcd wrote:

My endo called me at 8:30am this morning with my thyroid lab results:

TSH: 1.4
FT3: 2.4
FT4: 0.69

Hi Amy, do you have the ranges for these results? According to the lab ranges for mine, from three different labs, your FT4 is below the bottom cut off for normal and you would be hypo right now. Anxiety and palpitations are common hypothyroidism symptoms. I am so glad your endo has reduced your PTU dose for you.

Hi, catstuart,

Here are the ranges:
TSH: 0.270-4.20
FT3: 2.0-4.4
FT4: 0.93-1.70

My previous labs on 12/7/12, before I started the PTU, were:
TSH: 0.054
FT3: 4.5
FT4: 1.22

Before that, when I was on MMI, my TSH was above 4.0 and the other 2 were also showing me to be quite hypo. I did not have any anxiety or palpitations then. I only seem to have them when I am closer to hyper than hypo.

Hopefully, I won’t get as hypo as I was after the MMI. It can’t be good to be going up and down all the time.

The beta blocker is helping. I took my first dose this morning. Much less anxiety and palpitations!

Amy

[catstuart7]

#1176414

It’s tricky, I entered the low FT4 range many months ago but my hypo symptoms have slowly accumulated since then and did not come on right away. Anyway sounds like your endo wants you to come up some anyway reducing the dose so he’s doing better than mine!

[Naisly]

#1176415

Looks like your still a bit hypo as per your labs and possibly why your having heart palps and anxiety. Don’t go from your TSH, dr’s need to dose according to your FT4. 0.69 (0.93-1.70) Your TSH is moving and that’s a very good thing, and it will even out as your T frees do.

It’s a good thing he lowered your dose to 100mg. But for some reason I’m under the impression your endo is dosing according to your TSH. I sure hope not because according to your last labs, you were almost right on Q with were your TF4 should be.

~Naisly

[Kimberly]

#1176416

Just a reminder that we need to be *very* careful not to cross the line here into giving medical advice, which includes interpreting labs or making dosing recommendations. Since we aren’t medical professional — and don’t know someone’s complete medical situation — these issues need to be discussed between patient and doctor.

However, the latest medical guidance (which you can find in the “Treatment Options” thread at the top of the forum) does note that TSH is not a reliable benchmark for making dosing decisions early in the process. And certainly anytime that T3/T4 are flagged as out of range, it’s critical to discuss this with your doc and make sure you understand his/her recommendations on next steps.

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