[vanillasky]

#1059484

Just wondering if any of the ladies can relate to menopause and Graves at the same time?

I am going through “the change” and they really can’t tell where the heat is coming from.

My gyno put me on estrodial but it does not seem to help. I have tried patches, pills and topicals. They are horrendous when they hit and I have days where I must have them every 30 minutes.

My new endo at Cleveland Clinic told me that Graves DEFINITELY makes menopausal transition worse. Anyone having horrid hot flashes and sweating?

[snelsen]

#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

[vanillasky]

#1175030

thanks for writing. I was just diagnosed 2 weeks ago with Graves Disease. I have a TSH that is dropping constantly to 0.1. Also, have TSI of 800!

For years, local endo said I had Hashimotos but I was hyper a lot and it would then dump hormone and turn into hyp0 and then put on Synthroid. My thyroid would be working again and fighting to regain what it had lost so thus, reaction to Synthroid and hyper again!!!!!!!!!

I finally went to Cleveland Clinic suggested by my primary care and found a super duper Endocrinologist who confirmed that I do and did have Graves disease developing all along. Sort of a mystery illness he explained that mimicked Hashimotos/Hashitoxicosis. So at this point, he refers to it as a “subtle case.” However, he is apprehensive that it will get worse and develop into full blown Graves disease. I begin treatment in a few weeks when I get back to Ohio.

It’s been a long hard road for me with endos everywhere when all it took was extensive blood tests and RAI scans and ultrasounds. The doctors where I live are more interested in Diabetes and throw us thyroid patients by the wayside.

[Naisly]

#1175031

vanillasky,

You said your TSI is 800, what are your lab normal ranges for TSI? I ask because all labs are different.

~Naisly

[Bobbi]

#1175032

Being hyperthyroid causes similar types of body changes to menopausal symptoms. It is not necessarily easy to distinguish between them. I thought I was in menopause when I was diagnosed with Graves. It turned out that I got to go “through” menopause twice, because the first time the symptoms were all Graves. As soon as I got my hormone levels under control, periods came back and night sweats went away. For three or four years.

[vanillasky]

#1175033

thanks for replies!

My TSI was sent to Mayo Clinic via The Cleveland Clinic Foundation. It took weeks to come back. I don’t know why it went to Rochester, Minnesota.

Anyway,

it reads “normal range <150 and then mine says "value of 800." It also says "H" and flagged for Graves disease, needless to say I freaked out!!!!!!!!!!!!

A few years ago, it was also flagged but TSI was only 174. I was told then I had a 10 percent chance of getting Graves Disease but nobody ever wanted to follow up. The tests were very expensive and the insurance company does not want to pay for this analysis. I think this is why people don’t get diagnosed properly. There was a way of separating the blood. I am not sure how they did it but it is like a platelet count where blood and platelets are separated to see the value of them.

He ran several tests. Some of them are way over my head. I remember they took 10 large vials of blood out of me. Feeling faint and waiting for 2 weeks, but they finally took me seriously and although I am upset about the diagnosis, I am somewhat happy that I finally know what’s wrong with me.

[beach45]

#1175034

Hello,
I experienced similar and am already going into menopause post RAI 6 months now. I am 53. I had those horrible hot flashes for a while as I’ve been fighting with this Graves thing since May 2010 first on Antithyroid drugs for a while and then RAI May 2012. My TSI was high also and I probably should have been tested more thoroughly back between 2000 to 2010 as my TSH a lot of times was close to 0 yet my Free T4 was normal. I have researched and yes Graves can aggravate when women go into menopause as I had one female endocrinologist I loved who left my area said I could have definitely have issues and it is a double whammy!; plus my period went away or was light off and on when I was “hyperthyroid” and when I went seriously “hypothyroid” on Antithyroid Methimazole they were so bad I thought I was going to need a hysterectomy! I have fibroids too; I have had no period for 6 months now; my FSH was consistent with menopause and I had been gettting acupuncture for the horrible hot flashes for a while there which helped and all of a sudden on 125 mcg Generic Synthroid only for 2 months now post RAI I am no longer having hot flashes and I have not been going to acupuncture of late. So I suspect something is balancing out with me yet no blood test until later this month. Plus you say that a lot of the doctors are more concerned with diabetes as an endocrinolgoist who wrote a book on thyroid said most endocrinologists are concerned with diabetics and you have to find a “thyroid specialist” which at least are not too common here in the US or at least a doctor who specializes in thyroid. Personally I think we need more specialists in the area of thyroid and maybe in time as more younger people are developing autoimmune thyroid disorders so maybe things will change. I know for myself I am not like a lot of people who had no problems or minimal problems with this journey as it’s been quite a roller coaster ride for me pre and post RAI and I’m still struggling with weight. So yes I can very much identify with you regarding the hot flashes and menopause!….Good luck on your journey!

[vanillasky]

#1175035

Thank you so much for your story!!!!!! I appreciate it sooooo much.

I do finally have a good doctor, but unfortunately, it took years. I hate the doctor here at home. He just ignored my symptoms regardless of how sick I felt. I was just at his office yesterday for husband ( he has diabetes) and there was NOTHING about thyroid in his literature. He even had a TV programmed and all it mentioned was Flex Pen and diabetic cookbooks.

What about us? This is serious and we suffer so much. Cleveland Clinic has just an Endo that does thyroid surgery. I was shocked. I didn’t know they existed.

[beach45]

#1175036

Your welcome! Glad you have a good doctor now! I’m still searching.

My current endo somewhat relates as he had to total thyroidectomy so he knows how it takes a while to get adjusted post TT or RAI. He deals with both diabetes and thyroid. Yet well not with the menopause thing though! I wish I was one of those who I listen to here or other places who did not have many problems post RAI as I have been yet trying to be optimistic; I’m happy that my hot flashes subsided yet I still struggle with like I said the weight and also hair loss yet I believe somehow in time, this too shall pass with getting balanced.

[amosmcd]

#1175037

Hi, Vanilla Sky,

I have both Hashimoto’s and Graves, although currently the Graves antibodies are dominant. I was diagnosed with Hashimoto’s back in 2009. I was not hypo by lab values, but had every symptom of hypo, and had for decades. My endo tried to blame the symptoms on peri-menopause, but I said no way I’ve been in that for 30 years! So he tried me on a small dose of Levothyroxine and I felt fantastic for about a year or so, then was diagnosed with Graves.

My FSH has been menopausal for a couple years and I’ve finally reached the one-year mark of no periods. Not sure I trust it with my thyroid being out of whack, though! I was on the pill for about 5 years to deal with perimenopausal PMS mood swings, and was told to stop it when I turned 50 due to a family history of breast cancer. I’m now almost 55 and things have gone smoothly, but it went smoothly for my mother as well, so probably genetics at work there. I actually had night sweats while on the pill and once I stopped they went away. I get occasional mild hot flashes, but most often they occur between 10 and 11pm at night (when I’m still at work, so I use a fan at work.)

This past week I’ve had some symptoms of PMS (breast tenderness is one) but I’ve had that before and then don’t have a period. I would say my hot flashes and quasi-PMS symptoms are more due to menopause than thyroid.

I definitely want to ask my endo more about have both Hashi’s and Graves. He says it’s uncommon and makes it more likely I’ll need RAI or TT. Now on Methimazole, which I hate. It’s hard when we’re women and have all these different types of hormones muddying up the picture.

My endo treats diabetes as well, not just thyroid. I have no idea what percentage of his patients are thyroid. I’m going to ask him at my next appt in 2 weeks.

I hope you can get things figured out at the Cleveland Clinic and you can get some relief. I’ve heard nothing but good things about that place. Wish we had something like it here in Seattle!

Take care,

Amy

[Carito71]

#1175038

Hello vanillasky.

I too have suffered from heat intolerance and from hot flashes. My problem started a few months after fertility treatment. Hormonal changes sure make things worst. I do feel cold now more often but I still get hot at times. My TSH is a little bit low but my fT4 is normal. I mentioned my heat intolerance to my Endo last time I saw him and he told me that a lot of people just feel hot a lot 😮 Not much of an answer.

Also, regarding this:

vanillasky wrote:

For years, local endo said I had Hashimotos but I was hyper a lot and it would then dump hormone and turn into hyp0 and then put on Synthroid. My thyroid would be working again and fighting to regain what it had lost so thus, reaction to Synthroid and hyper again!!!!!!!!!

My Endo told me that Hashimotos and Graves is all one disease and that they are the two ends of the spectrum. He is the first one I hear say this by the way.

Caro

[Kimberly]

#1175039

Carito71 wrote:

My Endo told me that Hashimotos and Graves is all one disease and that they are the two ends of the spectrum. He is the first one I hear say this by the way.

Hi Caro – This is an area that is a subject of some controversy. Not all docs support this, but we did have one presenter at our 2011 conference in Boston who said that he would prefer to see the term “Autoimmune Thyroid Disease” used to cover both Graves’ and Hashimoto’s thyroiditis. It will be interesting to see if future research can shed some more light on this!

[amosmcd]

#1175040

Kimberly wrote:

Carito71 wrote:

My Endo told me that Hashimotos and Graves is all one disease and that they are the two ends of the spectrum. He is the first one I hear say this by the way.

Hi Caro – This is an area that is a subject of some controversy. Not all docs support this, but we did have one presenter at our 2011 conference in Boston who said that he would prefer to see the term “Autoimmune Thyroid Disease” used to cover both Graves’ and Hashimoto’s thyroiditis. It will be interesting to see if future research can shed some more light on this!

I find it interesting that Graves seems to dominate over Hashimoto’s. Or at least on this site, where Graves is the majority issue. I wonder how many Graves patients have turned hypo due to Hasimotos (without being on ATDs)? I myself would rather be a tiny bit hyper than this awful day-long sleepiness and fatigue from Methimazole. But bringing that issue up in a couple weeks with my endo.

Amy

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