[vanillasky]

in reply to: Are We Contagious freaks? #1176927

Thanks, Christina! Your post is encouraging.

I had someone ask me yesterday if I could feel my feet because of the Graves’ disease? LOL! I had to laugh at that one.

[vanillasky]

in reply to: Are We Contagious freaks? #1176924

I guess I was the exception about knowing what Graves’ was because as a child, my father got thyroid cancer, so we made it our business to know and understand all types of thyroid diseases.

My mother would always tell me she saw people with a goiter and she would tell me about people with thyroid eye disease so I knew at an early age, what Graves’ hypothyroidism, (never heard the name Hashimotos) and of course, malignant thyroid nodules were, which my father had.

I sympathize with you, Shirley, struggling with TED. I have seen it and I run the risk of it myself, but as you say, aside from this forum, it’s really not heard of for the general population, like you say “Diabetes.” I guess maybe we should have gotten something more simple? (sorry, that’s my sick sense of humor)

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176883

@Naisly, thank you for another great article. You are priceless. All the things you mention ARE ME! LOL~
The anxiety before. It is sort of like an aura that comes over me and then I say “here it comes.” It starts from the waist up and then this flushed/hot/sometimes burning feeling is on my back, neck, and face. RED HOT. I start sweating under my arms. Even my hands are soaking wet. I time them. They last anywhere from one minute to four minutes.

So by now you are saying “what’s the big deal?” I wouldn’t mind if they lasted as short as they do but I HAVE THEM ALL DAY!!!!!!!!!!!!!!!!!!! Too numerous to count. Night is the worst. It’s 14 degrees here today. I sleep with a fan blowing on me. BTW, got a sore throat too. And get up to change the night gown.

Despite Graves’, I have gained weight and struggle to keep it off. I always thought Graves’ patients were skinny, but I’m having a hell of a time battling the scale. This HAS TO BE MENOPAUSE!

@ Mary: thank you so much for writing to me. As Shirley does, you seem to understand where I’m coming from too.

I have been told accupuncture which I did. Didnt work. To me, it’s nothing but nonsense with needles.

The
Estroven, I swear is making it worse. I only tried Tri-est when I was perimenopausal a few years ago. It made me very emotional and I cried all day. Weird, I know.

I will ask this doctor about bio-identicals again and see if it’s worth a try but I have heard they are not as strong as Premarin or Prem-pro.

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176880

I think what is happening to me is being now post instead of peri. I’ve read several places that after the 12 months has passed, sometimes things get worse. I think that’s probably what is happening to me.

Body is changing. Red face now, sweat pouring. It was BAD before, but worse now.

I appreciate everyone’s comments but hope we can agree to disagree.

Harpy: I agree with what a lot of what is written, however, the “gut” problem here is not the issue. I met with Dr. Donald Kirby, Gastroenterologist at the Cleveland Clinic Foundation. He ran thousands of dollars worth of tests on me and put me through the mill. He found no mal-absorption problems. Only that my stomach does not always empty it’s contents. His recommendation was to avoid foods I know I can’t digest, so I do that and do not vomit except maybe once a year if something just doesnt agree with me.

@Shirley: out of all my responses, you seem to understand exactly where I am coming from. It sounds like you had a tough time during this challenging part of mid-life and I thank you for your input.

However, estrogen in it’s rare form, does not work for me. I’ve tried pills, patches, sprays, you name it. Dr.Margery Gass, who is director of The North American Menopause Society is my gyneocologist. She told me I am “the unfortunate woman that nothing works.” She claims after testing, it is my own personal body chemistry.

@Naisly: I appreciate the article. thank you!

Karen

[vanillasky]

in reply to: Help the GDATF by Sharing Your Story! #1176896

Finding this forum has made me feel like I’m “not alone” with this disease in a world where no one seems to know what it is and no one cares.

The people here understand me and all give good advice. They are all generally concerned and show empathy, sympathy, and most of all humanity to their fellow “patients.” This is a tough disease and when I’m at the end of my rope, I feel I can come here to the Graves’ Disease and Thyroid Foundation” and rant and rave. Someone always comes to the rescue and makes me feel better.
A great place with great people!
Karen

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176876

@Kimberly! thank you for the information. this is something that I thought personally to be honest. After all, seeing the thyroid controls just about everything in the body, it would stand to reason that high antibodies for Graves’ or Hashimotos, would affect the female hormones.

I have been to doctors when I was hyp0 and they told me hot flashes got worse when hyp0. So even though the levels are normal, if the antibodies are high, (and I don’t know because he didnt test them!) this makes good sense.

In a nutshell, my personal opinion is that the whole mish-mash makes things worse. They really can’t tell what is going on. The symptoms are the same for both and it is complicated.

This could be why I am not responding to the estrogen pills they give me. He did mention running a female hormone panel and see EXACTLY what I am lacking and then trying different combinations of hormones to see if that works. I hope he means that because gynos don’t bother. They just throw Premarin Pills and send you the bill!

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176874

@Kimberly, thanks for responding.

I think they want to test all the endocrine glands through blood testing. Just a guess. I did alittle research on it and that’s what I found but nothing seemed to pertain to my situation.

He didn’t test my antibodies again. They were 800 TSI. I am wondering even though my thyroid TSH FT4, etc are normal, do the antibodies affect the menopause? I plan to ask him this. After all, I do have Graves’ disease. I can’t help but think that this is just making things worse.

The gyno in Cleveland, margery gass, is older. Probably in her 60’s and very sympathetic. I do like her, but she told me to “live with it.”

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176872

@
Shirley: I have been to the gynocologist at Cleveland Clinic. She is supposed to be an expert in menopause. Well, she took one look at me and after I told her how HOT I get, she told me I was depressed and should go see a shrink. She said I need electro-shock therapy. I told my endo and he called her “barbaric.” He said they don’t do that anymore.

So I went to another gynocologist there at Cleveland. She gave me a soy based liquid to rub on my legs that contained estrodial. Didn’t work and it stunk!

And then she told me to “live with it.” I went to another gyno and he thought I had carcinoid syndrome so I had tests for that and they found nothing. I don’t vomit the Estroven, I just don’t see a difference although I only took it for 4 days and I am wondering if it made me sweat. Not sure. I skipped a pill and didn’t sweat as bad last night. It was actually better.
I do throw up when I eat soy foods though so that is not an option plus recent studies have told the doctors that soy “isn’t worth a damn.” and that’s what the gyno quoted me.

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176870

Took a look at the site. They mention soya/ soy and unfortunately, I tried that a while back. All I did was throw up. I have ulcerative colitis and a reflex problem, so after eating soy, i was pretty ill. thank you for trying to help me though.

Can’t eat a lot of the fruits and veggies they mention because again, my stomach. I throw up citrus and mostly all vegetables.
i have a disease called “Gastro pareisis? sp> It means paralysis of the stomach. Idon’t digest certain things and then they come up on me making me sick, very sick for days.

I already don’t drink or smoke. I try not to take chocolate, drink de-caffeinated beverages. Nothing else I don’t think I can do for the diet thing. Thanks for helping though, I appreciate it!

Karen

P.s. he (doctor) will probably run more blood tests. I feel like a human pin cushion anyway.

[vanillasky]

in reply to: Hyper Hormone Secretions? anyone know? #1176869

@cat, thanks for writing. No, my internist wants nothing to do with his. Says I have to just “live with it.: Easy for hm to say, he’s a man!

I have taken so many things and nothing works. I tried the Estroven for 4 nights, I swear my sweating has been worse. Got up the other night 3 times and had to change the nightgown. During the day, I have to drive witht he car window open even though it’s 30 degrees. I am burning up. I sweat so bad, I think I smell.

@Robboford: thanks for the information. I’ll take a look at that and see. So far, I’ve read no chocolate, no caffeine, blah, blah, I don’t drink, I don’t smoke but they are HOTFLASHES FROM HELL. I am burning up. The only thing that works is the Poise cooling cream I bought at the drugstore and a good ol’ ice pack.

I probably should give the estroven another try, but after what happened to me 2 nights away, I am afraid. I didn’t take it yesterday and had only 2 minor sweats last night and slept better, could be a coincidence, but it’s sorta funny, don’t you think?

The Graves he said is in remission because of TSH, Ft4 and all that other stuff. He’s not worried about that right now.

Carcinoid sydrome was another concern, but I had those tests twice in urine and in blood nothing shows up. also had tests for kidney and adrenal tumors, nada. I was willing to go through the tests again, not sure if he wants me to. I really am at the end of my rope. Living with this isjust plain hell. Trying to cope with it is something I’m finding on my own at this point. I have books to read and stuff like that.

If only the estrogen pills would/could work, I’m sure I’d be doing great despite the Graves’ disease.

[vanillasky]

in reply to: Going in Circles! #1176845

@Kimberly! thanks for the links and the information. I’ve known for years about the debates of black cohosh and 2 gyno’s I went to, said soy is really not doing anything for hot flashes and night sweats via the new research that has been done.

But he mentioned to me that he thought I should be on high dosage of estrogen/progesterone, which I think is probably more dangerous than this, so I’m going, for the time being sticking with this. A fertility specialist told me this was much safer than taking estrodial,estrone or testosterone. Everything has it’s pro’s and con’s, but my quality of life is very, very poor at this point. I feel lately like I’m getting worse. I don’t know when it ends, but I am pretty fed up with this condition right now. I don’t sleep. I am up at least 3x a night changing my nightgown. Sometimes the sheets are wet with perspiration too. I am emotional and cranky in the morning. I have the most embarrassing hot flashes in public, my face turns bright red and I am burning up. I was out yesterday and they told me the heat was broken down in Macy’s and I never even felt it. I am so hot! It’s a lot like being hyperthyroid. I know I’m not hyperthyroid because the bloodwork is fine. But my fsh is so elevated, it indicates ovarian failure.

[vanillasky]

in reply to: Going in Circles! #1176843

Hear from endo this morning. He’s washing his hands of this menopause situation. Keeps telling me to see that woman I already saw. Claims she is a specialist and that he knows nothing about hormones, estrogen, etc.

I told him I went to the director of the North American Menopause Society that is located right in his building, (she has an office there) and LOL!!!!!!!!!!!!!!!! he told me he never heard of her.

I’ll keep taking my Estroven and take my chances. They say it’s okay unless you are hypo, which I certainly don’t have that problem. And him? he’s worthless in this department.

These doctors! very infuriating.:mad:

[vanillasky]

in reply to: atenolol #1176802

@jaqeinquotation: I just saw a woman yesterday with TED. I certainly didn’t stare because I know what it is. To be honest, I didn’t see anyone staring at her. I feel for you, we all have our cross to bear. Just go about your business and for anxiety, I think something like Xanax or Klonopin would be better. I take Klonopin myself. You might want to ask your endo about that. It might give you an attitude like: “who cares!” I think we all that from time to time.

Karen

[vanillasky]

in reply to: Going in Circles! #1176840

Hi Cat! thanks for writing! Yes, I have a standing order for every 4 weeks so if I go hyper, I’m sure we’ll know right away.

I am going to try the herbal stuff and I understand what you are saying. I consulted with one company and they told me they would never sell it to someone like me because if we have Graves’ it can cause thyroid nodules and goiter!

But I did check with Estroven and so far, so good. I also will run this by the endo on March 20th when I go but that’s a long way off.

Not getting any sleep I swear is making me sicker. I am soooooooooooooo tired!

[vanillasky]

in reply to: Going in Circles! #1176838

@Kimberly: there is a woman there that “claims” to be a specialist. I saw her a few years ago. She claims to treat the “difficult cases.” She told me to wear my socks to bed, avoid sleep aids, tranquilizers, bio-feedback and accupuncture. None of this has worked as I have tried it all!

I do take the Klonopin to sleep but still wake up in the middle of the night having to change the nightgown.

Socks make my feet so hot, I could blow up. I’d rather walk in the snow to feel better.

Bio-feedback is baloney and I went for accupuncture and got hotter because they placed a sunlamp on my stomach for 45 minutes and I was hot all day long!

The people in neurology (my husband’s spinal doctor) is an accupuncturist and he claims it might help pain, but does NOT help hot flashes.

I learned an old saying “Patient heal thy self.” So that’s what I am going to do. Just ordered some Estroven Maximum Strength, if that doesn’t work, I’ll buy some other herbal preparations. And I just purchased POISE cooling gel. It helps alittle if I put it on the back of my neck.

Amberen I found out is not good for thyroid patients.

[Author]

Posts