Hypothyroidism (Hashimoto Disease)

[SSS79]

My wife was diagnosed with Hashimoto Disease less than a year ago (For those who don't know what it is: it's a hypothyroidism disease, an autoimmune one, where the body immune system attacks specific thyroid gland cells, leading to an inactive thyroid - doesn't produce enough hormones), and one of the symptoms or manifestations of this disease (besides many other more serious ones of course) is loss of the sex libido. And, yes, it doesn't just lower your libido, but it almost kills it, and some medical descriptions of this symptom: it actually turns sex into something "disgusting" and very undesirable! (It affects both men and women with the disease the same way).

Now, after months of hormonal therapy (she takes "thyroxine", the hormone the thyroid should produce normally but chemically synthesized) and after adjusting the dose, and her lab tests are very normal now, most of the symptoms have gone away or become very mild; BUT,

First, her sex libido never came back to what it was before all of that, now, it's not undesirable anymore (thankfully) we have good sex, she enjoys it, but she never has any sex desire; she never feels even a little bit horny or wants sex it in the slightest way;

and Second, no matter what she does, she cannot lose weight at all! not even a pound, with some kind of diets, some exercise; and she is getting depressed and frustrated about this issue (she gained over 15 pounds or so since she got the disease diagnosed, and she was already over-weight)

If anyone has some experience with this issue, any piece of advice would be very helpful.

 

[Holly Doors]

My wife was diagnosed with Hashimoto Disease less than a year ago (For those who don't know what it is: it's a hypothyroidism disease, an autoimmune one, where the body immune system attacks specific thyroid gland cells, leading to an inactive thyroid - doesn't produce enough hormones), and one of the symptoms or manifestations of this disease (besides many other more serious ones of course) is loss of the sex libido. And, yes, it doesn't just lower your libido, but it almost kills it, and some medical descriptions of this symptom: it actually turns sex into something "disgusting" and very undesirable! (It affects both men and women with the disease the same way).

Now, after months of hormonal therapy (she takes "thyroxine", the hormone the thyroid should produce normally but chemically synthesized) and after adjusting the dose, and her lab tests are very normal now, most of the symptoms have gone away or become very mild; BUT,

First, her sex libido never came back to what it was before all of that, now, it's not undesirable anymore (thankfully) we have good sex, she enjoys it, but she never has any sex desire; she never feels even a little bit horny or wants sex it in the slightest way;

and Second, no matter what she does, she cannot lose weight at all! not even a pound, with some kind of diets, some exercise; and she is getting depressed and frustrated about this issue (she gained over 15 pounds or so since she got the disease diagnosed, and she was already over-weight)

If anyone has some experience with this issue, any piece of advice would be very helpful.

I don't have personal experience but I have a friend who had her thyroid glands removed some years ago and has been taking thyroxine since, however her personal circumstances are slightly different in that her sex life wasn't particularly exciting with her husband in the first place and it didn't really matter to either of them.
Yes she also gained weight but nothing drastic only like a few stone, similarly with myself having the contraceptive injections has been a weight gaining factor altho with myself my weight has never bothered me particularly.
My advice on the weight gain side if she's really concerned like that and it's causing mental health issues is she makes an appointment with her GP to discuss it, I'm assuming here that you're in the UK from the way you typed @SSS79 , her GP will be able to help and if there's no real solution due to the medication there's lots of excellent weight loss programs the NHS provides for free, they'll fund all sorts right from weight watchers to swimming and activities and much more xx

 

[SSS79]

I don't have personal experience but I have a friend who had her thyroid glands removed some years ago and has been taking thyroxine since, however her personal circumstances are slightly different in that her sex life wasn't particularly exciting with her husband in the first place and it didn't really matter to either of them.
Yes she also gained weight but nothing drastic only like a few stone, similarly with myself having the contraceptive injections has been a weight gaining factor altho with myself my weight has never bothered me particularly.
My advice on the weight gain side if she's really concerned like that and it's causing mental health issues is she makes an appointment with her GP to discuss it, I'm assuming here that you're in the UK from the way you typed @SSS79 , her GP will be able to help and if there's no real solution due to the medication there's lots of excellent weight loss programs the NHS provides for free, they'll fund all sorts right from weight watchers to swimming and activities and much more xx

Thanks for your response,
Regarding the weight gain, she is just a bit frustrated as she was expecting to start losing weight "easily" when her hormone blood tests get normal, which didn't really happen. And, No, we aren't in the UK unfortunately, but she is intending to discuss the matter more with her endocrinologist probably this week or so. We will see what she'll have to say.

 

[WilliamG]

My wife was diagnosed with Hashimoto Disease less than a year ago (For those who don't know what it is: it's a hypothyroidism disease, an autoimmune one, where the body immune system attacks specific thyroid gland cells, leading to an inactive thyroid - doesn't produce enough hormones), and one of the symptoms or manifestations of this disease (besides many other more serious ones of course) is loss of the sex libido. And, yes, it doesn't just lower your libido, but it almost kills it, and some medical descriptions of this symptom: it actually turns sex into something "disgusting" and very undesirable! (It affects both men and women with the disease the same way).

Now, after months of hormonal therapy (she takes "thyroxine", the hormone the thyroid should produce normally but chemically synthesized) and after adjusting the dose, and her lab tests are very normal now, most of the symptoms have gone away or become very mild; BUT,

First, her sex libido never came back to what it was before all of that, now, it's not undesirable anymore (thankfully) we have good sex, she enjoys it, but she never has any sex desire; she never feels even a little bit horny or wants sex it in the slightest way;

and Second, no matter what she does, she cannot lose weight at all! not even a pound, with some kind of diets, some exercise; and she is getting depressed and frustrated about this issue (she gained over 15 pounds or so since she got the disease diagnosed, and she was already over-weight)

If anyone has some experience with this issue, any piece of advice would be very helpful.

My wife has had Hashimoto disease as well for almost 30 years. Hers was caused by a nuclear test done dealing with her autoimmune issues that damaged her thyroid. Autoimmune disorders are a bitch! There were times when her body would decide to attack various body parts including the heart. It was a LONG journey for us to get this under control. Our USA for profit medical system did not help (but that's for another day I guess). While her sex drive was not shut down, it's hard to feel romantic when you feel like shit.

She drifted thru years of trial and error with doctors scratching there heads. Then she found an excellent Integrative Medicine doctor who took a holistic approach. Yes, she's on thyroxine but it's a game of hit or miss because sometimes the thyroid would partially function. Other times it would not. So the dosing was hard to calculate. And weight loss is the NUMBER ONE issue with Hashimoto.

We found that diet is KEY with autoimmune issues. Why? Your digestive tract is the first line of defense. Most people find out they have unknown to them food allergies. So our doctor got her a extensive blood work done to test for almost 100 food allergies. Once she stopped eating those items (about 10 of them), she really felt better. But weight loss is still a problem. We are both fully vegan now and never eat any processed food because of how it attacks gut health. But it's still tough for her. We both ate exactly the same foods (that I prepare). From the time we flipped our diet to plant based, I lost 30lbs. She lost 10. She needs to lose 30 more. We both leveled at this point. It's really tough on her to see me lose all this weight and her not. I was able to get off blood pressure meds. She was not. When she went to a nutritionist with our list of foods we ate, she could not offer any improvements.

Everyone reacts different. But weight loss is a tough one with this disease. The silver lining is she feels 200% better than she did 10 years ago. I feel for your wife. Looking into food allergies and dietary changes to help would be a great start. Hang in there!

 

[SSS79]

Looking into food allergies and dietary changes to help would be a great start. Hang in there!

I really appreciate your response; Thanks very much.

I totally agree with you that all autoimmune diseases are hard to deal with, basically, as I understand, is that no one truly understand what is exactly causing them at the start!

I've read about how important your diet can affect the treatment and progression when it comes to autoimmune issues, and as a first step she already started a gluten-free diet (but she is not yet 100 gluten free!) we are taking it gradually at first. We have also learned that how toothpastes with fluoride could have had a major impact on the thyroid, and now she only uses fluoride free toothpastes, which was something we never really thought about!
One of the things we were told by a friend, and we searched it is the use of "black seed oil" (it comes from Indian or Islamic culture I guess) It's said it works like magic correcting your immune system errors! we started using it although it was very hard to find! (I had someone brought me a small amount from Egypt!!) Hopefully it will help. I've read it's very promising too as a cure for some cancers! especially non-curable ones (pancreatic for example).
If you have any other specific advice regarding diet, I'll be more than grateful, and thank you again for sharing your wife's experience, I hope you both the best in your journey with this disease.

 

[techpump]

My wife was diagnosed with Hashimoto Disease less than a year ago (For those who don't know what it is: it's a hypothyroidism disease, an autoimmune one, where the body immune system attacks specific thyroid gland cells, leading to an inactive thyroid - doesn't produce enough hormones), and one of the symptoms or manifestations of this disease (besides many other more serious ones of course) is loss of the sex libido. And, yes, it doesn't just lower your libido, but it almost kills it, and some medical descriptions of this symptom: it actually turns sex into something "disgusting" and very undesirable! (It affects both men and women with the disease the same way).

Now, after months of hormonal therapy (she takes "thyroxine", the hormone the thyroid should produce normally but chemically synthesized) and after adjusting the dose, and her lab tests are very normal now, most of the symptoms have gone away or become very mild; BUT,

First, her sex libido never came back to what it was before all of that, now, it's not undesirable anymore (thankfully) we have good sex, she enjoys it, but she never has any sex desire; she never feels even a little bit horny or wants sex it in the slightest way;

and Second, no matter what she does, she cannot lose weight at all! not even a pound, with some kind of diets, some exercise; and she is getting depressed and frustrated about this issue (she gained over 15 pounds or so since she got the disease diagnosed, and she was already over-weight)

If anyone has some experience with this issue, any piece of advice would be very helpful.

My wife is borderline Hashimoto, she has it, its just not fully full blown yet.
She had cancer treatments, radiation and chemo, for oral cancer and her thyroid was likely damaged.
3 years ago she was officially in menopause, caused by the chemo, no period for a full year. Hot flashes, brain fog, irritability, and, no sex. Like, nothing. No kissing, no intimacy, no thoughts even. She became like a roommate
2020 should have been the year of amazing sex because our sex life was fucking bonkers amazing prior to her cancer and especially thyroid and menopause issues. She had it on her brain all the time, we'd tease each other all day and night, sex almost every single day for over 20 years. We've been extremely intimate all the time; sex and intimacy was like our "thing" and we've had absolutely the most wonderful best relationship either of us could imagine. We can count real fights we've had on less than one hand in 24 years together.
Here's the problem:
She was assigned an endocrinologist to work on her thyroid changes the docs knew she was experiencing (because they knew they fucked her thyroid up with radiation and didn't really ever discuss it with us, it was seen on imagery/ultrasound) and while the damage was minimal and barely there, it started the downward cycle of eventual Hashimoto's.
Sadly, that endo doc left for a better job just as Covid lockdown began. So my wife, immuno-compromised due to chemo (FUCK CANCER TO DEATH JUST HAVE TO VENT THAT RIGHT NOW) couldn't get brave to see her ob/gyn for complete loss of her libido. I mean, she would wince almost from just kissing, on the lips, gently and lovingly
She was prescribed Imvexxy but hormone levels weren't checked. ????? Her oncology team endo person (a dickhead) didn't want to help her menopause at all, just "thyroid function" and it looked ok, to him.
2021 my wife rebounded from the Imvexxy and was insatiable in bed for about half the year. Insurance errors interrupted her Imvexxy for a few months and she didn't think it would tank her, but loss of estrogen supplement like that ruined her
The last time we had sex, and it was a bit painful for her but she initiated and wanted me badly, was March last year. We've tried just 3 times since and its not happening, I can't get in at all, she is in extreme pain.
FINALLY after months of problems with referrals and scheduling, she has a new endocrinologist and this woman is AMAZING. Gets down to the bottom, fully absorbed in my wife's wild and terrible medical woes and events the last 8 years. We love her; she's way too busy, but is trying as hard as possible to give my wife the care all her doctors have ignored or just not cared about at all for years.
My wife started Synthroid extremely low dose and we're waiting to see how it works. So far its given her nothing of her former life back: no improved memory, no weight gain at all (my wife eats every single thing she can get down and does not gain wait, nothing puts weight on she's a rail), and absolutely no libido. I hate the word "frigid" but that's where she's at, sadly, it makes me cry to think about it

New endo doc wants her on HRT very bad--estrogen, progesterone and especially testosterone. Its gonna take time, our insurance company is an asshole convention, but since mid-December there has only been movement on thyroid help. Her endo doc said that estrogen, progesterone, and testosterone were "not measurable" and are so low the blood work doesn't even show what the real counts are. My wife's ob/gyn looked us both in the face in June last year and said "your hormone levels are in range so that's not the problem with your libido and vaginal atrophy, its the thyroid issue I can't help you with" yet, that same chart says "not measurable." Why did the ob/gyn lie? Is this common?

To the women reading this, do you feel like your ob/gyn lies or gives false info about your tests and what's going on with you? Curious to know.

We're hoping in 3 weeks we get more answers on how the Synthroid is helping, and if she's going to start HRT. I feel like the endo doc is waiting to run new blood work after several weeks of Synthroid to see if its helping her thyroid activate production of estrogen, progesterone and testosterone. We're also waiting weeks now on results of her bone density check. This is all frustrating, the waiting and wondering if we're EVER going to get somewhere with this.

The loss of intimacy in my wife is beyond upsetting and sad now. I mean, there is absolutely nothing there at all. She's extremely multiorgasmic and always has been since we've been together, its kind of ridiculous sometimes we laugh about it but now, she doesn't even have thoughts that "I've orgasmed before and I love it and should do it" or "my husband, I love him, I want to be intimate with him" that kind of stuff is not present. I literally have to remind her that we still need to be intimate. I offer to just hold her in bed, with clothes on, or hold hands in bed, or something tame like that, not even kissing, and she's "ok fine if you want to." When it happens she feels better about it and appreciates it, but everything is a struggle. Even hugging during the day is like a "oh, yes hugging, I forgot" thing for her. My wife loves to play with the shower head and cum her brains out in the shower, she's super amazing at this and gets off for a long long time, and does this maybe once every two weeks now whereas she never wanted to miss it at all and did it daily. When she starts going, its great for her. But I have to encourage her to do it, to make sure she's at least trying to take care of herself, for her own happiness and health. But if I don't remind her to have orgasms, or offer to give them to her, she would never have an orgasm again, and be fine with that.

I pray to every deity everywhere to let her endocrinologist have the answers later next month, assign a thoughtful HRT regimen, and bring my wife her brain and body back!!!! We're 20 years married this summer and to be going through this is not what we signed up for when we got together. I am literally out of my mind anymore without any sex and barely intimacy. Maybe the thyroid meds will kick in? No idea. I feel like this will go on all year. I hope it at least starts getting better ASAP!

Thanks OP for bringing up Hashimoto's, and sorry for so long of a post

 

[LaFemme]

My wife is borderline Hashimoto, she has it, its just not fully full blown yet.
She had cancer treatments, radiation and chemo, for oral cancer and her thyroid was likely damaged.
3 years ago she was officially in menopause, caused by the chemo, no period for a full year. Hot flashes, brain fog, irritability, and, no sex. Like, nothing. No kissing, no intimacy, no thoughts even. She became like a roommate
2020 should have been the year of amazing sex because our sex life was fucking bonkers amazing prior to her cancer and especially thyroid and menopause issues. She had it on her brain all the time, we'd tease each other all day and night, sex almost every single day for over 20 years. We've been extremely intimate all the time; sex and intimacy was like our "thing" and we've had absolutely the most wonderful best relationship either of us could imagine. We can count real fights we've had on less than one hand in 24 years together.
Here's the problem:
She was assigned an endocrinologist to work on her thyroid changes the docs knew she was experiencing (because they knew they fucked her thyroid up with radiation and didn't really ever discuss it with us, it was seen on imagery/ultrasound) and while the damage was minimal and barely there, it started the downward cycle of eventual Hashimoto's.
Sadly, that endo doc left for a better job just as Covid lockdown began. So my wife, immuno-compromised due to chemo (FUCK CANCER TO DEATH JUST HAVE TO VENT THAT RIGHT NOW) couldn't get brave to see her ob/gyn for complete loss of her libido. I mean, she would wince almost from just kissing, on the lips, gently and lovingly
She was prescribed Imvexxy but hormone levels weren't checked. ????? Her oncology team endo person (a dickhead) didn't want to help her menopause at all, just "thyroid function" and it looked ok, to him.
2021 my wife rebounded from the Imvexxy and was insatiable in bed for about half the year. Insurance errors interrupted her Imvexxy for a few months and she didn't think it would tank her, but loss of estrogen supplement like that ruined her
The last time we had sex, and it was a bit painful for her but she initiated and wanted me badly, was March last year. We've tried just 3 times since and its not happening, I can't get in at all, she is in extreme pain.
FINALLY after months of problems with referrals and scheduling, she has a new endocrinologist and this woman is AMAZING. Gets down to the bottom, fully absorbed in my wife's wild and terrible medical woes and events the last 8 years. We love her; she's way too busy, but is trying as hard as possible to give my wife the care all her doctors have ignored or just not cared about at all for years.
My wife started Synthroid extremely low dose and we're waiting to see how it works. So far its given her nothing of her former life back: no improved memory, no weight gain at all (my wife eats every single thing she can get down and does not gain wait, nothing puts weight on she's a rail), and absolutely no libido. I hate the word "frigid" but that's where she's at, sadly, it makes me cry to think about it

New endo doc wants her on HRT very bad--estrogen, progesterone and especially testosterone. Its gonna take time, our insurance company is an asshole convention, but since mid-December there has only been movement on thyroid help. Her endo doc said that estrogen, progesterone, and testosterone were "not measurable" and are so low the blood work doesn't even show what the real counts are. My wife's ob/gyn looked us both in the face in June last year and said "your hormone levels are in range so that's not the problem with your libido and vaginal atrophy, its the thyroid issue I can't help you with" yet, that same chart says "not measurable." Why did the ob/gyn lie? Is this common?

To the women reading this, do you feel like your ob/gyn lies or gives false info about your tests and what's going on with you? Curious to know.

We're hoping in 3 weeks we get more answers on how the Synthroid is helping, and if she's going to start HRT. I feel like the endo doc is waiting to run new blood work after several weeks of Synthroid to see if its helping her thyroid activate production of estrogen, progesterone and testosterone. We're also waiting weeks now on results of her bone density check. This is all frustrating, the waiting and wondering if we're EVER going to get somewhere with this.

The loss of intimacy in my wife is beyond upsetting and sad now. I mean, there is absolutely nothing there at all. She's extremely multiorgasmic and always has been since we've been together, its kind of ridiculous sometimes we laugh about it but now, she doesn't even have thoughts that "I've orgasmed before and I love it and should do it" or "my husband, I love him, I want to be intimate with him" that kind of stuff is not present. I literally have to remind her that we still need to be intimate. I offer to just hold her in bed, with clothes on, or hold hands in bed, or something tame like that, not even kissing, and she's "ok fine if you want to." When it happens she feels better about it and appreciates it, but everything is a struggle. Even hugging during the day is like a "oh, yes hugging, I forgot" thing for her. My wife loves to play with the shower head and cum her brains out in the shower, she's super amazing at this and gets off for a long long time, and does this maybe once every two weeks now whereas she never wanted to miss it at all and did it daily. When she starts going, its great for her. But I have to encourage her to do it, to make sure she's at least trying to take care of herself, for her own happiness and health. But if I don't remind her to have orgasms, or offer to give them to her, she would never have an orgasm again, and be fine with that.

I pray to every deity everywhere to let her endocrinologist have the answers later next month, assign a thoughtful HRT regimen, and bring my wife her brain and body back!!!! We're 20 years married this summer and to be going through this is not what we signed up for when we got together. I am literally out of my mind anymore without any sex and barely intimacy. Maybe the thyroid meds will kick in? No idea. I feel like this will go on all year. I hope it at least starts getting better ASAP!

Thanks OP for bringing up Hashimoto's, and sorry for so long of a post

Breaks my heart. To answer the one question you asked? No, I don’t feel my obgyn has ever lied to me.

 

[techpump]

Breaks my heart. To answer the one question you asked? No, I don’t feel my obgyn has ever lied to me.

Thanks LaFemme!! and for your answer. My wife and I really like her, too, she seems to be a "get down tot he bottom of it all" but really slipped last year. It was very odd. And upsetting. Maybe she was spaced out, or too busy to focus? Our area grows roughly 30 new families a DAY and all doctors are stretched out. To see a new GP its almost a 6 month wait right now. Getting hooked up with a doctor is like winning a lottery. A doctor that is good is like Powerball jackpot.

 

[LaFemme]

Thanks LaFemme!! and for your answer. My wife and I really like her, too, she seems to be a "get down tot he bottom of it all" but really slipped last year. It was very odd. And upsetting. Maybe she was spaced out, or too busy to focus? Our area grows roughly 30 new families a DAY and all doctors are stretched out. To see a new GP its almost a 6 month wait right now. Getting hooked up with a doctor is like winning a lottery. A doctor that is good is like Powerball jackpot.

I hear you. We have a shortage of doctors - GPs in particular. I’m fortunate that I live in a large city - it only took me a few months to find a doctor that suited me. My sister lives in the far north - there is only one doctor serving almost half of the territory, and he’s terrible. She “sees” an internist by Zoom who lives in Vancouver. The struggle is real.

Regardless, my heart breaks for both you and your wife. I really wish you both the best.

 

[PorknBeans19]

I was diagnosed with hypothyroidism at birth. I'm now 33. I've had a massive struggle with weight loss. I'm still heavy, however the best diet I've ever been on was keto. I went on it for 2 months in the summer of 2021 and I lost nearly 3 stone. I intend to go back on it this year.

My sex drive isn't great alot of the time. I struggle to climax most of the time and the drive to meet a guy isn't there for me now. Used to be fine in college but now in my early 30s, I'm just not interested. I take 150mgs a day of thyroxine. I used to be on dosages as such as 450mgs per day.

Its a very difficult hormone replacement to balance at times. Worst part was in my teens I rarely took it. So I went into a deep depression. My best friend died nearly 8 years ago now and when that happened I stopped taking it again. Anxiety and depression with hypothyroidism are not a good combo.

 

[kingdong9]

Male, full long term Hashimoto's sufferer. My tip is bin the levothyroxine and get Erfa desiccated thyroid - I lost 70lbs when I swapped to Erfa, I got my t3, ft3, ft4 levels under control and started getting some life back. Go gluten free as much as you can and make sure Vit D, Vit B12, Selenium, Zinc and Vitamin C levels are all optimal, as vitamin & mineral levels being optimal are essential to battle hashi's.

 

[WilliamG]

Male, full long term Hashimoto's sufferer. My tip is bin the levothyroxine and get Erfa desiccated thyroid - I lost 70lbs when I swapped to Erfa, I got my t3, ft3, ft4 levels under control and started getting some life back. Go gluten free as much as you can and make sure Vit D, Vit B12, Selenium, Zinc and Vitamin C levels are all optimal, as vitamin & mineral levels being optimal are essential to battle hashi's.

Passing this onto my wife. Never heard of this. Found This study and it looks like something to try. Thanks for the info!