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in reply to: Absent minded #1174968

I think this is pretty typical for all of us! Kimberly’s reference is very helpful.
WE are pretty scattered when we are hyper.
Shirley

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in reply to: Graves and Menopause? #1175029

Well, as someone who has been there and done all of that, plus all of my friends, I suggest that your experience is 100% typical of menopause. The hot flashes are part of the game. They happen. I don’t think there is much you can do about it, as you have already discovered.
But, I am not clear if you also have Graves’. Do you? And, what stage are you? Just beginning? just diagnosed, or have you had graves’ for years?
Shirley

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in reply to: Husband’s definition of support… #1174909

Wow. If your endo says you do not need ATD’s be sure to ask a lot about that when you see your endo. That does not sound right. You have the classic symptoms,a nd your labs document it. What can he/she be THINKING? Do you need a 2nd endo opinion. See how Tuesday goes.
Shirley

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in reply to: Graves’ Rage #1174935

Same with me. THe sooner you get on ATD and a beta blocker, the better!

Dont let them mess around, get started asap. I was a raving maniac, irritable, impatient, crying, pretty much crazy. Yep. It is terrible.
You will be better. Hope you can begin tomorrow. What’s your heart rate? Just asking to be sure you are safe enough. If it is over 120, off the ER you should go.
Shirley

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in reply to: Normal T3/T4, Low TSH? #1174927

To Gatorgirly,
I wonder if you should wait much longer between dose changes and labs before you change mcg. of Synthroid? It is my understanding, that when we have had a supposed TSH for a LONG period of time, that it will take a long time before there is a change. I am in that place right now. No matter how my dose is changed, my TSH says I am hyper. T3 within range T4 a little high. I feel fine. So my endo and I decided to decrease from125 to 112, but this time, I am going to wait at least 6 months before we do another lab. Just a thought. I have found Graves’ very tricky to manage. I have found TED the worst thing that I have every experienced.

Speaking of TED, did you have both eyes done at once? I think I remember that, and did not look back to check. Did you have a lot of orbital fat? How many walls did they “do” on each eye? I think I understand that if the inferior wall is left alone, there is much less chance of double vision.

Catstuart-thanks for that reference. I’ll show it to my endo. No matter how many times I read it, I am hesitant if I really “get” it.
Shirley

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in reply to: New here with a dilemma #1174887

Hi, Khadijah, welcome to this great forum. I suggest you search the forum, for people who have posted their own experiences about RAI and surgery.
Good idea to read the references Bobbi mentioned. There is no “wrong” choice. YOu will find the same thing over and over again from others who have been in your position. It is very anxiety producing when you are in the decision process,and when they have a decision, and move forward with it, they are much more relaxed, knowing that they have taken action on their way to recovery from this illness of Graves’.

It is VERY typical of our spouses, co-workers, friends, employers, not to understand ANY of this. One thing that helped me a LOT, is to think back to before I had Graves’. I did not know a THING about it, and if I had a co-worker who became irritable, anxious, hyper, crabby, “not themselves” I would wonder why they were like that, and why didn’t they “get a grip>” This is typical. Education of yourself, and a simple explanation to others, is a beginning way to explain it. One of the best things to say, is that there are treatments that you are exploring, and in a few months, you will be pretty much back to “your old self.” In the meantime, ask for some slack and understanding. It is REALLY difficult for others to understand at all, cause it is kind of an invisible illness, not like a broken leg with a cast that everyone can understand!!!
YOU will get better!
Shirley

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in reply to: Labs are a no-no here but… #1174862

Great email! You have reflected in what all of us (Graves’ people on a panel) said. EDUCATE YOURSELF! It is complicated, but we really need to have a clue about all of this.
Thank you for your wonderful post. My EYES are so tired, so they need to go to bed now. Thus, a short note tonight. May you never get TED~!
Shirley

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in reply to: Labs are a no-no here but… #1174859

Hi, so glad you are hooked with a good clinician and a plan! REally glad you are off beta blockers. Bet you will not have your cardiac symptoms anymore. ARe you tapering the beta blocker, or did you just discontinue using it?

A thought for you to explore with your doc. I think that TSI is not a bit helpful, or used, in determining treatment. The TSH, T3 and T4, plus your symptoms, are the guidelines for that. Some people are euthyroid and and have elevated TSI’s for years!

My understanding is that the remission rate is 30%, and researchers are not very sure or clear about how/why that happens when it does happen.

Best wishes, and I am so glad you have a better plan of care in place!
Shirley

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in reply to: Another question…What is? #1174808

Hi!
Yep, there is a lot of learning going on all the time!
ATD=anti thyroid drug
The name is descriptive of what it does. since we have too much thyroid hormone racing around,which is what Graves’ disease is, the goal is to decrease the amount of the hormone in our system. There are two drugs in this country methimazole, which is the first line treatment and propothiouricil which is an older drug, and used in some defined, special set of circumstances. So that is how we bwgin, and we begin to feel much better. And are in a much safer and healthier position to make the next set of treatment decisions.
All foe now, its bedtime!
more later keep asking questions. we all need to understand graves and know as much as we can.
shirley

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in reply to: Week 6 of methimazole #1174770

Hi Amy! I am IMPRESSED that you got so much garden work done. Glad to hear you are walking. (Are you walking in Wallingford?? or at Green Lake, those are my beats.)
Re Seattle and tulips. Is it time to plant bulbs now??
I did an interesting thing. I dug up all tulip bulbs, labeled them carefully, to redistribute the following spring. The rats (alley, Wallingford) at 249 of them!

Re the muscle cramps. I have the same issue. Those cramps are super painful, and I have no choice but to get out of bed and stand. It is usually calf, ankle and toes. Terrible! But I have had Graves’ forever. It was infrequent, and the drug of choice was quinine, which has been taken off the market recently. **I have one suggestion. I keep tonic water (contains quinine) at all times. If this happens, I then drink a few ounces at that time, then try to remember to continue to do that for a few nights. I do believe it helps keep them away, and once the cramp is gone for that night, the tonic water seems to help them not returning.

Of interest, my mom also died of esophogeal cancer. It was terrible.

Of interest also, I had a thyroidectomy. There are a lot of good posts for you to read about that on this forum.
Shirley

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in reply to: Professional weight loss help #1174685

Hi,
I have not gone to Weight Watchers myself. The one thing I do know is that they don’t use drugs, and they don’t have specially packed foods for you to buy. I think that is a racket.
But I do hear very good things about it. I understand now you can keep track of everything on your iphone and/or droid if you have one. My neighbor does not care to go to meetings, but she records her food intake on the WW website. She has lost 12 lbs in a year. She did cut way down on sugars, has stopped eating in the evening, has more prepared veggies around, and decreased bread/CHO a bit. She did not change her wine intake.
I am happy that you have you OD’s behind you with no major complications. large (perforating cribiform plate like one of the posters on the forum) or small. Well, I think the numbness is a small complication, but it will resolve.
Shirley

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in reply to: Lab order #1174546

Asa fellow patient, (unless you heart rate is super high) I think it’s weird. too[
Shirley

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in reply to: Eye exam today #1174658

Hi Amy, well, you tried to be sure your eye doc was familiar with TED. It is not correct that the endo is the go-to person if you have TED. But, as you plan to do, take it a step at a time, get the new RX for your glasses, and maybe that will be the end of your eye troubles. Sometimes, and quite frequently, Graves’ people have minor eye symptoms, dry eyes, itchy eyes, etc., and warm packs really do help, as well as some eye drops without preservatives. There is plenty that can be done if a person has TED, but in the active phase, it primarily treating the symptoms, as I described above, plus wearing sun glasses when the sun and bright light bothers your eyes. I hope you are not hypo, but that can be resolved, too. Unfortunately, everything with TEd and Graves’ takes TIME.

If you have increased eye symptoms, I can suggest a referral to a doc who does not TED, send a PM.

I hope your glasses make a huge difference in a positive way, and that is the answer.
Shirley

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in reply to: New “old” person #1174607

To Beach, nice post, and you reflected very nicely the T3 T4 topic.
I have a feeling you know this, but you have been on Synthroid a VERY short period of time. You’ve barely been on it long enough to have a lab drawn. Getting the right amount is frustrating, and it takes time.
Of course an endo or other doc should listen to how you feel. Having said that, when you are getting the “right” amount of Synthroid, or other thyroid hormone replacement, generally, we feel pretty darn good.
My endo at an academic center, says that there are very few people who actually feel better on the combo. He said that adding T3 to Synthroid, done properly, the T3 must be taken twice a day, to prevent a rush and then a dump. and few patients were willing to do that. This pretty much reflects his thoughts about Armour, for the T3 dose is not divided in time. Having said that, there are people who have done well on Armour, like Gayle.

Gayle, your post is so helpful to folks beginning on this Graves’ journey, or those of us who have been on it a long time. With people over 50, there is an added risk of atrial fibrillation (if too much thyroid hormone, or dumps of it) which is where that thinking came from.

In my own experience, my TSH is ALWAYS suppressed. Way back in my chart it says, “iatrogenic hyperthyroidism” which means it was caused by the medical profession. In other words, I was taking too much thyroid hormone for too long. On the other hand, my new endo and I have tried to slowly taper it over two years, and my TSH did not budge. But I became very hyPO
clinically, and could barely lift my head off the bed, and developed gastroparesis. So now I am on 125mcg. Was on 150mcg for years, and we tried to decrease it, got to 77mcg. No good.

Our bodies, before Graves, did all this thinking for us. Now we have to have docs and ourselves figuring out what to do.
It can be very discouraging. But it all we have.
Shirley

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in reply to: Chances of developping TED? #1174613

Hi Shakira,
Yep, people have Graves’ in the beginning and develop TED later (: I am living proof.
So here’s my story!

I developed Graves’, then had a sub-total thyroidectomy, when I was just 24. (They don’t do sub-total thyroidectomies anymore.) I developed TED over four decades later. My eyes were fine all those years. Then, (of course!) when I was in my 40’s, i got magnifiers from the drug store.

But from a TED point of view, I did not even know about it. (and I have worked as an RN in health care for many years.)
I am sure my eyes were fine until they weren’t! If I had gone to an eye doc, simply because of going from age 24 to in my 70’s, the baseline would not have been helpful. Simply because of the passage of time. (kinda like most people in their 40’s who begin getting magnifiers at the drug store!)

My thinking is that if you are not having symptoms of TED now, it is kinda up to you whether to get a baseline eye exam. Actually, it is a bit of a challenge to find an ophthalmologist who has even HEARD of TED. Many of them are not familiar with it, or they read about it in med school.
Do what feels right for you.

In my almost three years of TED, the most important thing is to have a good photograph of you. I think I have a very advanced case of TED. As Ski said in her very helpful post, and I am suggesting, that most Graves’ people will never have heard of TED, nor will they have it!

Welcome to our world. This is a very reliable website. There is a lot of crap on the internet.
Shirley

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