[vanillasky]

#1059531

Hi all,

Lately considering everything wrong, I haven’t been feeling all that bad, but today has me down, very down.

I have felt so sick all day. Does this happen where one day you feel okay and the next is just horrible?

I’m new to this diagnosis, and before I just chalked it up to menopausal symptoms which I have anyway, but today? HORRIBLE!!!!!!!!!!!!!!!

I have the following symptoms:

1. extremely tired despite sleeping pretty good yesterday
2. explosive hot flushing, worse than hot flashes. For no reason, they just come on and my heart races, I feel winded, the face turns red, and I explode into sweat. This has happened about 5 times today. I want to cry!
3. Nausea – don’t know if Tapazole is to blame, but food makes me sick!!!
4. Depression – I feel so lousy, I am very despondent.

Please let me know if this is what Graves’ is like and what I have to look forward to until they DO something about it!!!!!!!!!!!!!

[Carito71]

#1175438

Hello Vanillasky,

I’m sorry you are having a bad day and that you are not feeling well.

Since you are taking Tapazole, I would recommend letting your Dr. know about your symptoms. I say this because you say you are feeling nauseated and tired. These are two things that might be related to liver problems.

I have felt well and then not so well during my treatment with Methimazole but never nauseated nor have experienced drastic changes. I felt very sick at the very beginning when my body was still overloaded with thyroid hormones. Once the Rx started to work, I started to feel better. It happened one day at a time. Later, when the Rx made me hypOthyroid, I felt a little bit off. Once again, it happened that I would feel worst a little bit more every day, not all of the sudden. When the Dr. lowered the dose and I started to get hypERthyroid the same thing happened … I felt a little bit worst every day. Fortunately, the Rx started to work again and once again, I felt a little bit better as the days went by.

I did get very hot at first and even when I was hypOthyroid I felt very hot and would get the hot flashes you describe. My Dr. told me that many people feel like that and he didn’t think too much of it

I would recommend calling the Dr. and letting him know your symptoms. It might be that you need labs to see if the Rx needs to be adjusted. When is your next set of labs?

Hope you feel better soon,
Caro

[vanillasky]

#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.

[Bobbi]

#1175440

Fatigue is a huge part of Graves. We sometimes get the misconception that because we are REVVED!!!! we should have energy. Nope. The way I tried to explain it to my family was that my “resting” heart rate was so high that even a slow walk to the mailbox was at the “aerobic” level of exercise. Nobody sustains whole days of aerobic levels of exercise without fatigue.

Hot flashes. Yes. There are ways to try to cope, but that’s about it until we get our levels under control. And, then, of course there’s menopause. I’m still getting the odd hot flash 10 years after menopause. (I’m sure you didn’t need to hear that, though.)

Nausea. No. But I’m sure that you encountered many days in your life so far when you have been squeamish for no well-understood reason. Given that tapazole is new to you, you might keep it in mind as a causative agent, but most of the time people tolerate the drug very well digestively, so it might just be that (unfair as it seems) you have another issue plaguing you temporarily.

And, of course you feel lousy. You may have expected the ATD to start making you feel absolutely normal quickly. It won’t do it, unfortunately. While the ATDs do start working immediately, we are not always on the correct dose at first. AND, the thyroid cells not only make hormone, but they store it for future use, so until the stored supplies are used up, you won’t feel much of a change from the ATD. AND (as if that wasn’t already too much), it takes our bodies time to heal once we get to the correct dose….whether it is replacement hormone or ATD. We have to wrap ourselves up in a cloak of patience for a while, and look for minor improvements along the way back to good health. It does not happen all at once, unfortunately.

[JillyJinx]

#1175441

I was diagnosed with Graves in May this year. This month i was diagnosed with TED although i have had symptoms for some months. I am now back taking Carbimazole and have been told i will need Thyroid surgery. I’m scared. Scared i will never feel well again. My heart is constantly “fluttering”. I am so fatigued i cant make it up the stairs, or lift anything. I cant eat although i have been told i should be more hungry and i’ve lost 8lbs in a week. My thyroid tests have just come back TSH = 0.01 Free T3 = 43.7 and Free T4 = over 100.
My consultant said having my Thyroid out will cure Graves but from the research i have done this is not necessarily true.

Any advice/help please – i feel so ill some days i just dont want to go on.

I now take 40mg Carbimazole daily.

[gatorgirly]

#1175442

[Kimberly]

#1175443

@vanillasky – Hopefully, the lab work will shed some light as to what is going on. I can’t recall how long you’ve been on the methimazole, but for me, I initially had to take it with food or milk to avoid feeling nauseated, so that might be something to consider. Also, eating certain foods can trigger a bad day for me, particularly overloading on sugar, MSG, sodium, iodine, or caffeine. Hope you get some relief soon!

@JillyJinx – Hello and welcome to our forum! We have several regular posters here who have chosen surgery as their treatment option and have been very happy with that choice. You can read their stories by using the “search posts” feature in the top right-hand corner of the screen and using keywords like “surgery” or “thyroidectomy”. Shirley (snelsen), Alexis (adenure), and several other posters have been documenting their experiences with surgery here. Dealing with Graves’/TED is a very difficult journey, but you *will* get through this and get your health — and your life — back! Take care!

[Carito71]

#1175444

vanillasky wrote:

thankx, Caro for the information.

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

You are welcome. I hope you are doing better today. I’m glad you got labs. Hopefully it is just one of those things that will soon go away

I got labs today too. Today has turned out to be not so good of a day for me. It started out great. I think it is b/c I drank coffee this morning and because I had labs. I’m feeling super tired now. I hate feeling so tired. That is one thing that does happen to me on and off. I get tired in the afternoon and I feel like I need a nap. I think it has to do with me doing a lot in the AM and today also going to get labs. I also had a late breakfast.

If I want my day to get ruined all I have to do is get labs or go to my Dr.’s appt. I think I get tense and stressed out wondering what my results are going to be and what the Dr. is going to say. To my appointments I go feeling confident and positive but I always come out feeling stressed out, tired and unhappy. Mainly because I think I’m doing good and then my Dr. doesn’t tell me so. He always comes out with the same story about maybe needing RAI or TT, even if my #s are normal and the Methimazole is getting my thyroid hormones to the normal range. He doesn’t like the Rx. He has been cleared about that. He likes the RAI and TT options better. I feel down a couple of days after my appointments until I psych myself up into feeling more confident again. Other things that will definitely cause a bad day for me is not getting a good night sleep or waiting too late in the morning to have breakfast. I have to have breakfast I’m starting to think that coffee does it too and … maybe eating honey. I know … honey … weird I know but I’ve noticed that every time I eat honey my energy is less. Maybe is not at all related but that is my theory for now Feeling just a little bit sick of my stomach for one reason or another really throws me off. I feel very tired afterwards. Anyway, those are are some of the things that can cause a bad day for me.

Hope that both of our labs come back looking better.

Have a nice weekend.
Caro

[vanillasky]

#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

[catstuart7]

#1175446

Hi Vanillasky, sorry to hear you are feeling so bad and can’t take beta blockers. I wanted to share a technique that I found to help my arrhythmia long before I started beta-blockers, it evens out the rhythm and slows things down square breathing There’s probably a better link out there, but this might get you started. Puran Bair has a book about it.

Somehow the linking of timing your breath with counting the heart beats calms things down.

I find I feel chills and cold when I have a fever so maybe you feel so hot because you have a low temp?

[vanillasky]

#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.

[Carito71]

#1175448

Hello vanillasky,

I’m sorry you are not feeling well today. Looking at your TSH and Free T4, your numbers are within normal range. I know that sometimes doesn’t mean much because we are different and feel different even within normal ranges, but maybe your symptoms are related to your FSH and female hormones.

The FSH is a hormone produced by the pituitary (just like the TSH) to stimulate your ovaries to produce eggs. When the ovaries don’t respond the way they should (for reasons such as menoupause, ovarian failure, etc), the pituitary keeps producing more hormone b/c it doesn’t know what is going on with the ovaries, it just knows that they are not responding. I think your OB/GYN or a Reproductive Endo would be the best one to help you figure out what is going on. Your regular Endo would probably know too but an OB/GYN or a Reproductive Endo can run ultrasounds to see your ovaries and see if what is going on there.

As for the temp, 98.6 is normal and yours is 98.1 but with the FSH being so elevated maybe the LH (another female hormone) might also be elevated. All of this can make your temperature rise. Reason why when a woman ovulates, her temperature rises.

As for the heart, I take Metoprolol. It is a scored pill even at 25mg (so I can take 12.5). My Dr. prescribed it b/c I too have low blood pressure naturally and she wanted me to be able to split it in 1/2 if I needed to. She was concerned about my heart (it was elevated due to my thyroid) and she said that the Metoprolol would protect it. Ask your Dr. if Metoprolol might work for you. As for exercise, I don’t think that is a good idea if your heart is already above 100 beats per minute while at rest. My Dr. asked me not to exercise when I first started treatment. He cleared me for exercise once the Rx started to work and my thyroid #s were lower.

Did your Dr not run labs for ALT/AST (liver) and WBC (white blood cells)? ALT is what I would personally would like to see if I was having abdominal pain to rule out liver problems. WBC if I thought I was coming down with an infection.

I hope you feel better soon,
Caro

[vanillasky]

#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]

#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

[Carito71]

#1175451

I’m so sorry all of that has happened to you. Our body is amazing in all its functions and therefore also complicated to understand at times. I hope you hear back from your Dr. soon. Since you are having abdominal pain I would think he would want to order ALT/AST to make sure it is not your liver. I hope the stomach pain has gone away and that you have a better night tonight. Being a woman sure is hard. I’m not looking forward to menopause.

Hang in there but if you start to feel a lot worst (vomiting blood, unexplained bleeding, rash, sharp pain in right part of the stomach, high fever …) please get immediate help.

Hope you feel better soon,
Caro

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