[vanillasky]

#1059700

Hi guys
Talked to my endo this morning on the phone. He says Graves’ is in remission but watching it cautiously. However, I am having bad hot flashes, (debilitating at times) 3 or more night sweats per night. (last night was the worst) have to take and change nightgown!

He says I am definitely in menopause FSH is 147.2. So he is now saying I should be tested for Hyper Hormone Secretions. I don’t understand this.

I told him I do not respond to estrogen replacement hormones and progesterone. Have tried it all as you may have read. Hot flashes/sweats seem to be getting worse. I AM VERY AFRAID. I don’t understand what is wrong with me and what he means by this?

Anyone please help if you understand what it is I have to go through when my appointment is in March. I AM SCARED.

Karen:o

[catstuart7]

#1176867

Wow, sorry to hear things are so intense. I don’t know much about menopause, but I wonder how did your endo determine you are in remission? Were your antibodies (TSI or TRab) tested? Whatever is gong on March is a long way off – is there another doc you could see in the meantime like maybe an internist?

[Robboford]

#1176868

Hi Karen,
I was watching this show on TV last night and straight away thought of you. Don’t know if it will help or maybe you have already seen it – It is a British show called Food Hospital and basically investigates different food types helping people with varying symptoms of their medical conditions. The episode last night had a lady currently experiencing menopause and having debilitating hot flushes multiple times a day. She was too embarrassed to go out with her “red face” and being seen sweating profusely and her quality and and outlook on life being severely affected. The Doctors suggest a diet that she follows for 5 weeks excluding some foods and adding other types that they think may assist them. It wasn’t anything new age or over the top and every week they feature different patients with a wide range of problems and for some the diet changes are amazing for others their symptoms and side effects are greatly reduced. The lady who was featured in this episode had an amazing outcome. Her hot flushes were greatly reduced, her sweating substantially reduced and she seemed like a totally different person. Again, not sure if it will help you but anything maybe worth a try. Here is the link (if I am allowed to post it) http://foodhospital.channel4.com/episodes/series-1/ Hopefully you may get some hints or tips that may help you. I have crossed my fingers for you. Once again I am not saying it is a miracle cure but hopefully will help you in dealing with some of your symptoms. I know it will be something I will be keeping to refer to when it’s my turn to hit menopause in the next 4 – 5 years (not looking forward to that journey – LOL).
Cheers, hugs and kisses
Debbie
(A.K.A. Robboford)
Oops …. Episode 6 of Series 1 is the episode that features the above

[vanillasky]

#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]

#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.

[snelsen]

#1176871

Hi. I have always presumed you were taking a prescribed small amount of estrogen to help you with this tough time with your hot flashes. But I just looked up Estroven, and found it is a alternative combination of a bunch of vitamins and some other stuff. Clearly, this is not an option for you, cause it does not help at all, and you vomit when you take it.

I encourage you to go to a gynecologist, discuss this situation with her (get a woman, preferably one who is a big older, and has been in practice for a while.) There are reasons not to take estrogen, like a significant breast cancer history with estrogen receptive pathology. But if you consult with this kind of a doc, I think you can have a good discussion about short term use of estrogen to help you with your menopausal symptoms. I know this has helped others.
But the gyn doc is the right doc to discuss this with.
Shirley

[vanillasky]

#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.

[Kimberly]

#1176873

Hi Karen – I’m not familiar with the term “hyper hormone secretions” — or whether this testing would only be specific to certain endocrine glands. I would press the doc for exactly what they are testing for (i.e. function of the pituitary, adrenals, hypothalamus, etc.).

Although it’s definitely a challenge to sort out menopausal vs. hyperthyroid symptoms, definitely keep the thyroid issue on your radar. The latest medical guidance notes that patients who stop taking anti-thyroid drugs while antibodies (TRAb) are still raging are more likely to have a recurrence.

Agree with Shirley that an older female gyn might be willing to work a little harder to help you get some answers and some relief. It’s pretty easy for a man to tell you to just “tough it out” – but someone who has “been there, done that” would hopefully be more attentive and more compassionate!

[vanillasky]

#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.”

[Kimberly]

#1176875

Hello – I haven’t seen any research on antibodies and menopause or antibodies and hypER symptoms.

However, there was a study done a couple of years ago on patients with Hashimoto’s thyroiditis who were being treated for hypO – and still had symptoms, despite normal thyroid hormone levels. One of the theories was that the antibodies might be having an impact.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/21186954

This would be a great question for your doc. And definitely be on the lookout for any further changes in symptoms (although it’s obviously difficult to untangle what’s due to Graves’ vs. menopause). If it turns out that your antibodies are still high, that increases the risk for a recurrence of hyperthyroidism.

Take care!

[vanillasky]

#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!

[Harpy]

#1176877

vanillasky wrote:

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.

I think you’ve summed that up well, but in addition do not discount the added issues you’ve mentioned of the gastroparisis and GERD, there is quite a school of thought that believes that the source of good/poor health is in the gut.

I am a man, so you can take whatever you care to from that, my journey in this health sphere began with my partners diagnosis of GD over 6 years ago, although I believe that she has been in and out of GD most of her adult life.

Kimberly is on the money in my opinion, most doctors/endo’s do not fully understand thyroid disorders and discount the effects of high antibody levels if thyroid hormones appear to be ok. We must remind ourselves that many of them still try to assess thyroid health with just looking at TSH levels, so I do not have particular confidence in their abilities, please note I do not believe they are bad people, just generally bad doctors because of the constraints of the systems they work in and the way they were trained.

My take is it took a long time to get you to ill health, and will most likely take a long time to get to good health, the system is geared to quick fixes, quick fixes are usually just masking symptoms, the system is like that because that is how most patients behave and what they seek from the system until their health totally collapses.
How many patients see that a change in diet or behaviour is a positive move, rather more often they will be seen to complain about the restrictions it places on them to go out and enjoy the good stuff in life, food, drink, busy lifestyle, etc?
If one sees healing as a temporary discomfort that they have to endure until they can get back to what they percieve as their life, then the healing will be just that, temporary.

I don’t know what the answers would be for your situation, but I think that a key part of it will be in improving your gut health, I have come to believe that a lot of health issues start there. It will ultimately be up to you to guide your healing process, by all means use all the resources available at your disposal, whether they are discussion groups like this one, doctors, medical journals, friends & family all are legitimate sources of information and opinion, but none of them are 100% right.

We took the healing process as a multipronged approach, diet, exercise, lifestyle & behaviours. Most people think they can not improve behaviour and attitude and can’t see a health conection, well this is where stress comes from and it won’t be until you take a hard deep look at yourself that you will actually understand this. Stress is not what the world does to you, it is how you respond to those actions and we underestimate the health ramifications of chronic stress just from normal everyday modern life.

Sorry it’s turned into a bit of a rant, but that’s my gig.

[snelsen]

#1176878

Hi vanillasky,
I mentioned this before, not sure if you happened to notice it.
FRom what I can tell, you are NOT taking an estrogen supplement. You are taking soy, melatonin, chamomile, passion flower, valerian and hops.
Estroven is (straight from the official website of the company selling this supplement:
Estroven Nighttime Ingredients

Estroven Nighttime is formulated to help provide a more restful night’s sleep and to wake up refreshed*. It contains:

Melatonin, clinically proven to help you fall asleep easier*
Soy isoflavones, clinically proven to help reduce hot flashes and night sweats*
Estroven Herbal Sleep & Relaxation Blend with chamomile, passion flower and valerian and hops

So, if I am completely off base, sorry. But if this is the situation, perhaps you might try a real estrogen supplement? See if it helps.

And, I know that now is NOW, and how well I know it, having dealt with Graves’, TED and menopause……but…one day, when menopause is behind you, you will probably be saying to someone in the middle it, that you had hot flashes, too, and they went away. And it won’t be too helpful to the woman in the middle of all this, cause she is (as you are) suffering from them NOW! My experience was very similar to yours. I could not take estrogen, cause I have had estrogen receptor positive breast cancer twice, so it was not an option for me.
Shirley

[Naisly]

#1176879

Hi there!

To add to what Shirley had said, check out this National Institute on Aging It very easy to read and has some great info about estrogen supplements. And since you have a hard time with stomach issues, you can get it in a patch, or spray etc. There are also more government links at the bottom of that article with 1-800 numbers.

Also, I did some looking for you and I came across this site that sells night gowns that apparently help with night sweats, made especially for menopausal women. Anyways, just Google – wicking nightgown. Read about it, I don’t know how they work personally, but I suppose it may be worth a shot.

You know, some women are misdiagnosed with menopause, some doctors actually think it’s Graves because the symptoms are nearly the same. I’m not saying this is you because I know you had high antibodies, I just think that’s sort of ironic since most times people are misdiagnosed with NOT having Graves.

I can’t imagine how hard this is for you, dealing with all of this at once – having the same symptoms from two separate issues can be very stressful. But on this note, Harpy is right (nice to see you back harpy), try to de-stress your life, eat healthy and advocate for your health.

I have to remind my doctor almost every visit to check something. I only know to ask because I have research it. Like my last visit, I asked for a vitamin D and iron test because I am feeling so lousy. Sure enough both are very low. I haven’t had either tested since Aug. and probably should have had them tested a lot sooner because both are so low now, that it will take a while for them to catch up – especially iron can take a very long time. But you see, this is something my doctor had missed. I’m not mad about it, I’m just glad I was educated enough to catch it before it got really bad. See what I’m saying?

Anyways, as always I hope this helps!

~Naisly

[vanillasky]

#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

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