[barbra]

#1060190

I’ve been on Levothyroxine for a little over a week, low dose, but I’ve been feeling pretty darn good. Had some energy, been sleeping through the night without interruptions and just had some small muscle pains. Spent yesterday afternoon from 12:00 PM to 5:00 PM at the Holiday Inn Conference Center handing out applications for casting for a local movie to be filmed. Had a ball.

Terrific, I thought, and then BAM.

Woke up this morning with every part of my body feeling totally achy like someone has been beating on me with a big stick. I’ve been bone tired and cold all day, if breathing wasn’t so automatic that would have been too much work as well. I’ve been sitting in my chair barely able to hold my eyes open, rereading the same sentence from the Joseph Wambaugh book over and over cause it’s not sinking in.
The dog is looking at me sideways.

It’s like a kick in the butt, a reminder – look Barbra, we’re not done with you, you got a long ways to go!
I got too cocky, thought this isn’t so hard and I forgot that some good days are invariably followed by some crappy ones, or at least one.
Paying the piper, I guess.
I do hope, though, that tomorrow will surprise me and as I go along the good days will outnumber the bad ones.

If I could lift my arms I’d send some hugs.

Barbra.

[Kimberly]

#1181135

Hello – Sorry to hear that you are feeling unwell, especially after such a great day yesterday. We often hear stories on this forum from patients who accidentally did “too much too soon” while still in recovery mode. Hopefully, this will pass quickly, but if you continue to feel this poorly, an appointment with your primary care doc to rule out any other issues would be helpful. Please take care…and be kind to yourself!

[barbra]

#1181136

Hey Kimberly,

You know I feel a bit better today. You could be right, maybe I did do too much on Sunday. I never thought about that. I just enjoyed the almost “normal” feeling.

Something to keep in mind.

Thank you.

Hugs.

Barbra.

[barbra]

#1181137

I’m still going up and down like a yoyo. I feel a little bit better for a while, usually in the morning, and then it goes downhill again.
I am so hypo! TSH at 34.1 and FT4 at 0.4, neither anywhere near the reference. And my throat, not my mouth, still feels dry and tastes like it’s giving off fumes.

I took your advice, Kimberly, and called my Endo. Actually got a call back and after I told him that I can’t do 2 more weeks like this, to the 4 week mark for my next test, he added Cytomel 5 mcg twice a day to the Levothyroxine 25 mcg per day.
I don’t know much about that medicine, but I’m going to start it tomorrow morning for 2 weeks only.

Can only help at this point, right?

Hugs.

Barbra.

[angelamercy]

#1181138

Hi Barbara.

Amazing, huh? I have been dealing with Graves Eye Disease since August of 2011. Thyroid removed, infusions, radiation, two eye surgeries – last one August 2nd of this year.

Anyway – I have those days where I am full of energy and then WHAM – I am so tired I can barely get out of the house. Full weekend and Mon & Tues I took loooooong naps. My thyroid levels are normal. Last week my doctors told me they were delaying last surgery until January. We were hoping to have in November. The reason: Your body has been through a lot and needs more time to heal and rest.

I am sure you are a lot like me, resting is hard. Keeping busy use to be my best medicine. Not so much this past year. I have learned to listen to my body.

Good luck and I hope the additional medications help.

Angela

[angelamercy]

#1181139

Oh by the way have you ever been to Benny’s Pub in Hagerstown? They have GREAT food!

[barbra]

#1181140

Hi Angela,

Your levels are normal and you still get those crummy days? That doesn’t sound very encouraging.
I’m sorry about your eye disease, that’s one thing I think about a lot and one of the reasons why I called the endo. I did not want to hang around in hypo land too long if I could help it.

I’ve heard about Benny’s Pub on Eastern Bvd. but haven’t been there. Sounds like a place to try.

Hugs.

Barbra.

[snelsen]

#1181141

I want to join you at Benny’s , but then I decided both of you, and everyone else on the forum whom I feel I “know” so well now, should come to SEattle!
Then you can “do” the San Juan Islands, the Olympic Peninsula, the Atlantic ocean, the orca whales, and Mt. Rainier! I have good sleeping arrangements here, some are on the floor but they are really comfy!
Shirley

[barbra]

#1181142

Hi Shirley,

I would love nothing better right now than to pack some stuff and come see you in Seattle.

I was born in Germany and came to the US in 1966. My husband, who was born in Maryland, said he was going to show me all of the states. He forgot to mention that he was going to try to live in all of them. I did see more than half of the US but never made it to New England or the far west. We lived as far south as Florida and Texas, as far north as Binghamton, NY and as far west as Nevada. I even accidentally stepped into California once.

If it’s ever possible, money – time – and health wise you may just see me at your doorstep, for a visit, mind you. I would love to see all the sights, love the Orcas.

Until then I’m sending all my very best wishes and hugs your way.

Barbra.

[snelsen]

#1181143

Hi Barbra,
you said it all! Money, time and heath. Keep the “other Washington” on your radar. Maybe you and your husband will add it to your list!

I’ll look forward to hearing from you, how you are feeling, with the addition of the extra med. Maybe it will help. I don’t recall, do you have any eye involvement? If so, I hope it is very mild.

Shirley

[barbra]

#1181144

Hey Shirley,

Yesterday and today haven’t been too bad. It’s way too early to really tell but maybe the addition of the Cytomel will make a difference and help my levels just a little.

I know the fact that I am sleeping through the whole night, with the aid of Ambien, 5mg, helps me tremendously, although it makes me a bit wobbly in the morning. But I do have a cane and am careful.

It’s always a long discussion with the doctors where my age of now 70 comes up, which they seem to think disqualifies me for some meds.
I keep telling them I don’t want to live to be 100. I don’t drink, I never did drugs, I recently gave up smoking, I’m eating too much and starting to resemble the Hindenburg, I don’t gamble and my husband passed away in November. What the heck!
I just want to have a decent day and sleep through the night, just one at a time.

I had RAI on the first of July and haven’t been on this journey very long.
I have no eye involvement but it’s something I do think about, hence the “no more cigarettes”.

And I’m sending you lots of good hugs from the, today, cold and windy Washington DC area.

Barbra.

[barbra]

#1181145

I was so happy to say “no eye involvement”!
As soon as I wrote that my eye started to look different. So, maybe it’s all in my head.

I am hoping that the swollen, crusted right eyelid and the occasional dryness, itching, tearing, sensitivity to light or scratchy feeling is from eye strain and reading too much. And yes, I read a lot.
I have bags under my eyes, nothing new there, but in the morning my right eyelid is darker, swollen and looks as if someone hit me in the eye.

I have an appointment with an Ophthalmologist next week.

If this is eye involvement then this whole thing has been moving pretty fast, all since the middle of April when I found the very small goiter.

Just when I started to feel better overall.

Hugs.

Barbra.

[Kimberly]

#1181146

Hello – One presenter at our San Diego conference noted that he believes most Graves’ patients have *some* level of eye involvement. However, the vast majority of patients will *not* experience the worst of the eye symptoms, such as bulging and double vision. Hopefully, the ophthalmologist will be able to give you some further direction next week.

[barbra]

#1181147

Just got home from the Ophthalmologist and I am happy to say there is no eye involvement due to the Graves.
I have dry eyes, even though they sometimes tear, and that’s why they sometimes crust up. The swollen eyelid may be from rubbing the eye while I’m sleeping. Now I have a nice supply of eye drops.
He wants to see me again the end of November to make sure there is no Glaucoma. Oh, the joys of being old.

One thing I wanted to mention: The addition of the Cytomel 5mcg twice a day, which I understand is T3, to the 25mcg of Levothyroxine made a world of difference seemingly from one day to the next. I’m only taking it for 2 weeks and tomorrow will be my last dose. I’m hoping that I am not going to slide back into those misery days.

Had labs done yesterday, haven’t picked up the results yet, but my Levothyroxine has been upped to 75mcg and I’m starting the “wait and see what happens and how you feel” phase over again.

So, I’ll take the good news about my eyes and be happy.

Hugs.

Barbra.

[SueAndHerZoo]

#1181148

If this was already discussed and I missed it, I’m sorry, but why Cytomel for only two weeks? If it helped, why do you have to stop?
Sue

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