[vanillasky]

in reply to: What causes a bad day? #1175450

Forgot to mention:
called doctor and he doesnt want to do blood work or liver enzymes at this time seeing I just started the Tapazole November 20. He said when something happens, it happens over night so I might get false negatives. He just told me to watch myself for problems.

I did inform him yesterday of how I felt. Of course, have not heard back. I imagine next week. Today I have been alittle better than yesterday. Temp is up one half a degree and flushing is not as severe but still don’t feel right. As I mentioned, TSH is in normal range for some, but his whole idea is to raise the TSH to 3.0 to see if I feel better there. Chances are, I will because I have never functioned well with a low TSH. He told me healthy people have tSH of 1.0-2.0

[vanillasky]

in reply to: What causes a bad day? #1175449

Hi!

I went to a reproductive endo and she gave me a shot of estrodial cypronate and all we got was an estrodial count of 14! Another woman she gave a shot to, her estrodial level went to 140. Her hot flashes were gone, mine were worse!!

She concluded I didn’t absorb the shot and recommended I see a gastroenterologist, which I did at Cleveland Clinic. He put me through the mill thinking I suffered from malabsorption. Well? after $1,700 worth of testing, he concluded that my absorption is just fine. So much for the reproductive endo. My primary care was outraged that she even said that to me. And I went 4 hours to see a great specialist in that field.

I also had abnormal bleeding in summer 2011. So my OB-GYN sent me for an ultrasound of all the female organs. Everything was normal but they found a big round shape inside my uterus. They concluded I may have uterine cancer and wanted to do surgery and biopsy right away, which I did.

They scraped my uterus and it was filled with bloody polyps. All went to pathology and everything benign. Haven’t had any bleeding since.

Dr. at Cleveland is my gynocologist. Most of all my doctors are there now as I find they are the only ones that know what they are talking about. She is also head of the North American Menopause Society. I have been tested for Carcinoid Syndrome and with a blood test and 24 hour urine test. All benign at this point.

So they conclude I have a tough menopause, don’t respond to estrogen replacement therapy and they just don’t know why. However, my new endo claims that Graves’ disease makes menopausal symptoms a lot worse in some women. So I guess I’m the lucky one.

I tried the beta blocker you mentioned last time my TSH was 0.01. I remember being at a meeting and fainting. Next thing I knew, I woke up in an ambulance on the way to local hospital. They thought I had a mild stroke so I had to call my Neurologist which is in Buffalo, NY and he concluded after the proper brain scans, that it was caused by “poly pharmacy” which he concluded that my blood pressure is so low, the beta blocker works in reverse. It makes the heart pump harder to get the blood going through my veins, thus making me faint. So there we have it. I know, it’s one for the books!

[vanillasky]

in reply to: TT #1175477

Amazing how many people have never heard of Graves’ Disease. When I tell people I know that I was just diagnosed last month, they say “Graves?” They never heard of it. I had known since I was a small child what it was. My father was diagnosed with thyroid cancer when I was 10. I learned pretty quickly how that little gland can cause so much trouble.

[vanillasky]

in reply to: Few things to help you feel better. #1175493

Thank you, Naisly! Wow, I am learning alot and I have some very bad habbits here.

First of all, I love chocolate! I crave it. have to have it several days a week. So this makes Graves’ worse?

I love diet soda, diet coke, diet pepsi, diet canada dry gingerale – all have aspartame in it!!!!!!OMG!:rolleyes:

Stress is a big factor for me. In-laws are gone but still some relatives bug me.

Have sleeping problems, I think because of menopausal night sweats. I know I need more sleep – can’t seem to get it. Doctors won’t give me Ambien or any of that.

Take Klonopin for anxiety but I hate it. Makes me loopy. Any suggestions?

[vanillasky]

in reply to: TT #1175475

If I could just chime in here:

At the Cleveland Clinic Foundation there is one doctor that does nothing BUT thyroidectomies. If you PM, I will give you his name. There is such a thing as an “Endocrine Surgeon.” I never heard of that until I went to Cleveland Clinic and I live in NY.

Most of the surgeons here that do thyroid surgery are GENERAL surgeons and they just do everything. I had seen one awhile back and she mentioned how great she was as taking out appendix. I didn’t like that, so if you want someone who specializes in nothing but, Cleveland has the doctor.

[vanillasky]

in reply to: What causes a bad day? #1175447

thanks, cat. you could be right! I had something along those thoughts as well.

When I was mis-diagnosed years ago with Hashimotos, they always thought that because my body temp was always 97.1, but then it always is no matter if I take it at home or in the doctor’s office.

To me, when I get past that, I feel like a fever. I had bronchitis about 3 years ago, ran a temp of 101 and it felt like this, only that felt hotter.

thank you for the link. I still think that maybe they could give me a beta blocker that was low dosage and I could split it in half or quarters. I had gone to a cardiologist a few years ago and because of my low blood pressure which usually runs 98/62, they make me faint! Crazy, I know.

[vanillasky]

in reply to: Emotional Roller Coaster #1175470

I just explain that it’s not really me, it’s the illness itself.

My mother always tells me “You were such a sweet little girl.” Well…………that little girl is now 54 years old and has Graves’ disease and menopause. What do you expect? They have to consider where it comes from. We are all nice people here but hey! We have our days. I use Klonopin 2x a day if I need it And with the holiday coming, I NEED IT. LOL!

[vanillasky]

in reply to: Update re: Second consultation with Surgeon for TT #1175472

Well, I’m glad for that you are finally going to get this over with!

He sounds like an experienced surgeon so you should be in good hands.

I am sorry you have to wait so long, though, but that shows he must good or he wouldn’t be so busy.

Good luck!!!!!!!!!!!!!!!
Karen

[vanillasky]

in reply to: What causes a bad day? #1175445

thank you! You guys are the best!

Now I got the labs back and today, feeling worse, I am so sorry to say but gotta be honest.

Today I feel like I have a fever. Now the controversy with doctors: My body temperature runs 97.1 all the time.

Today it is 98.1. I know that’s not much, I have felt continuously
WARM. It’s not like a hot flash, it’s just warm and feel dazed, like a malaise.

I didn’t sleep well last night. I was sweating all night. Whole body was HOT to the touch. Except for my feet and ankles. They were sooo cold, they felt numb.

My face is always hot.

I woke up at 6:30 a.m. and had a horrible stomach ache. I never get stomach aches and am as a rule, constipated. However, now I am having cramps and frequent bowel movements, and sweating and hot the whole time.

I wonder why I have to do all this suffering but then I’m not gonna have a pity party for myself.

Husband went to get my copy of the labs taken yesterday

TSH 0.66 Range 0.40-4.50

FT4 1.0 Range 0.9-1.8

FT3 pending

FSH (follicle stimulating hormone) 107.77

Postmenopausal range 0.29-96.0

I dont’ understand the FSH. Maybe I am in ovarian failure and post menopausal?

Heart is racing. I cannot take beta blockers because I have low blood pressure and pass out when I take them.

I stayed home all day then finally went to the mall for a long walk, got very, very warm, facing was HOT and became tired and winded. My voice is actually weak. So much for the exercise. And it is so difficult to look good and not let anyone know how sick I am. This whole thing is sad, very sad.

Sorry for giving bad news.

Another note: I know 0.66 is in normal range, but not normal for me. My TSH usually runs about 2.0 to feel “normal.” So anything below 1.0 makes me hyper feeling

[vanillasky]

in reply to: What causes a bad day? #1175439

thankx, Caro for the information.

I did go to the hospital today and had them take some blood. We will see what they find.

[vanillasky]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175415

@Kimberly: can you explain the difference between what you are mentioning and block and replace?

I was never told anything different so I assumed it was the same.

The doctor that wanted to do this was from India and he said they had success there. I don’t know where he got the idea from but I didn’t want to try it.

[vanillasky]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175410

The treatment is called “block and replace.” When they thought I had Hashimotos/Hashitoxicosis, one endo I was seeing had suggested this.

I left his office with 50mcg Synthroid and Tapazole 10mg 2x a day. I have to be honest, I never tried it. I thought it was insane to put Synthroid into the body which was too high a dosage in my opinion, ( am 5’4″ weigh 95 pounds) and then kill it with Tapazole.

The theory behind it is that they feel the thyroid will become “Lazy” and only respond to the medication because if they make the thyroid lazy it would balance out and then you would be in normal range and feeling just perfect. I have to roll my eyes at that.

Not to knock it, he said he had some success with this treatment but I didn’t want to bother and now with Graves’ diagnosis, I am glad I didn’t. I think the last thing I needed with 50mcg of Synthroid. You could try it. It may help you. Hey, you never know!

Hope this explains at least what was told to me by the endo I was seeing in Buffalo NY at the time.

[vanillasky]

in reply to: Are Migraines related to Graves’? #1175406

thanx Carito. I have a feeling maybe they are related. I’m going to mention this to my neurologist next appointment.

[vanillasky]

in reply to: T4 OK, but T3 Not behaving #1175398

I have been told there are other thyroid pills that help convert T4 to T3 or contain Armour, (pig thyroid) but my doctors don’t feel it’s safe. What about Cytomel?

[vanillasky]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175357

Thanks, Naisly. I wish these idiot doctors had run these tests years ago.

I had to go 4 hours away to find out what was wrong with me. So many years wasted of my life.

[Author]

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