Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi again,
I'm posting here bc I know I may not get ahold of my dr tomorrow and I just want to talk this out. As I've mentioned on previous posts I have eczema and a sun allergy. The eczema is beaucoup mysterious, atypical, no one has ever been able to explain it (including doctors at the Mayo Clinic) but the asshole drs did give me too many steroids to try and suppress it, which caused me to develop Cushing's Syndrome in 2012. I think Cushing's Syndrome is what led to my hashimoto's/hypo. Whatever. So, I have not used topical steroids or any steroids since 2012 and just rolled with the punches my skin gave me/tried to use other methods of skin calming and healing. I have had long stretches without a rash.
However, of course, I leave for an important trip on Monday and my skin has exploded all over my hands, arms, neck and chest. No clue why, no big changes, staying out of the sun as usual. Many drs have told me that it's ok for me to use topical steroids to help with my eczema/rashes now that I am "recovered" from Cushing's. But I do not trust drs when it comes to steroids, I feel like they push it so hard and I know what the consequences can be, plus I don't want to screw with my hormones anymore. But I have several important meetings on this trip, with my very high weight gain in the last year or so (probably 40-50lbs), sun allergy (which causes me to have to stay 100% covered in the sun, that means long sleeves, pants, scarf, no matter how hot it is) which makes me look like a crazy Grey Gardens lady and wonky knee that's been messed up from weight gain...I am far from my most self confident. And let me tell you how beautiful a giant rash covering your neck and chest makes you feel. I want to have fun! My boyfriend is coming with me and we want to have a great trip. I am already so burdened with all this other shit that I don't want to be hassled by this ugly, itchy rash. So I am thinking about filling a topical steroid rx and just using it for the next few days :(.
I'm really stressed about either choice. I also had decided before the rash started that I was going to OK myself to eat gluten on this trip. I'm going to Europe, where I've heard the breads are made with different grains that are less aggravating to gluten sensitivity, and I just didn't know how I was going to make it ten days in another country I've never been to before eating gluten free and vegan. But now that my skin is freaking out for no reason, I don't know what to do. I have been looking forward to this trip for so long, working so hard to get to go on it, so much planning and hoping, and now I just feel overwhelmed with sickness and anxiety. Part of me feels like why bother with anything!
Also, I read a book called the Thyroid Diet by Mary someone and I don't know what the good thyroid books are and which are just snake oil salesmen. But anyway, I thought this book had some comprehensive stuff about supplements. My problem with it though, was that it has a weight loss focus, which is ok, that's why I got it, and she keeps hammering home how much harder ppl with thyroid issues are going to have to work to lose weight like on and on. Like you need to work out at least one hour a day and you'll still barely see results, stuff like that and lots of reviews of weight loss drugs etc. But then at the end she offers "success" stories and they were like lol.
All the stories went like this: "Before my thyroid crash I weighed 110lbs and had tons of energy, then I gained weight and weighed 175lbs. Now I eat a paleo diet, work out two hours a day and have lost 20lbs! I still don't feel much better but I did lose a little bit of weight!". It made me feel like, ok, if you have to drive yourself into the ground trying to get back to a pre thyroid weight and all you can possibly expect is to maybe lose 20lbs, then what is the point? Like, exercise and eat well, yes, of course, take care of yourself, but if it is this fucking impossible to lose weight with a thyroid problem shouldn't we just be focusing on body acceptance or something?
I just felt so frustrated by this book. I ordered "The Root Cause" from the library since that has a lot of good reviews on amazon. Anyone have any book recs? Or cookbooks? I'm a gf vegan.
Thanks for listening to me. I'm sorry for my swearing. I appreciate your support so much.
I'm posting here bc I know I may not get ahold of my dr tomorrow and I just want to talk this out. As I've mentioned on previous posts I have eczema and a sun allergy. The eczema is beaucoup mysterious, atypical, no one has ever been able to explain it (including doctors at the Mayo Clinic) but the asshole drs did give me too many steroids to try and suppress it, which caused me to develop Cushing's Syndrome in 2012. I think Cushing's Syndrome is what led to my hashimoto's/hypo. Whatever. So, I have not used topical steroids or any steroids since 2012 and just rolled with the punches my skin gave me/tried to use other methods of skin calming and healing. I have had long stretches without a rash.
However, of course, I leave for an important trip on Monday and my skin has exploded all over my hands, arms, neck and chest. No clue why, no big changes, staying out of the sun as usual. Many drs have told me that it's ok for me to use topical steroids to help with my eczema/rashes now that I am "recovered" from Cushing's. But I do not trust drs when it comes to steroids, I feel like they push it so hard and I know what the consequences can be, plus I don't want to screw with my hormones anymore. But I have several important meetings on this trip, with my very high weight gain in the last year or so (probably 40-50lbs), sun allergy (which causes me to have to stay 100% covered in the sun, that means long sleeves, pants, scarf, no matter how hot it is) which makes me look like a crazy Grey Gardens lady and wonky knee that's been messed up from weight gain...I am far from my most self confident. And let me tell you how beautiful a giant rash covering your neck and chest makes you feel. I want to have fun! My boyfriend is coming with me and we want to have a great trip. I am already so burdened with all this other shit that I don't want to be hassled by this ugly, itchy rash. So I am thinking about filling a topical steroid rx and just using it for the next few days :(.
I'm really stressed about either choice. I also had decided before the rash started that I was going to OK myself to eat gluten on this trip. I'm going to Europe, where I've heard the breads are made with different grains that are less aggravating to gluten sensitivity, and I just didn't know how I was going to make it ten days in another country I've never been to before eating gluten free and vegan. But now that my skin is freaking out for no reason, I don't know what to do. I have been looking forward to this trip for so long, working so hard to get to go on it, so much planning and hoping, and now I just feel overwhelmed with sickness and anxiety. Part of me feels like why bother with anything!
Also, I read a book called the Thyroid Diet by Mary someone and I don't know what the good thyroid books are and which are just snake oil salesmen. But anyway, I thought this book had some comprehensive stuff about supplements. My problem with it though, was that it has a weight loss focus, which is ok, that's why I got it, and she keeps hammering home how much harder ppl with thyroid issues are going to have to work to lose weight like on and on. Like you need to work out at least one hour a day and you'll still barely see results, stuff like that and lots of reviews of weight loss drugs etc. But then at the end she offers "success" stories and they were like lol.
All the stories went like this: "Before my thyroid crash I weighed 110lbs and had tons of energy, then I gained weight and weighed 175lbs. Now I eat a paleo diet, work out two hours a day and have lost 20lbs! I still don't feel much better but I did lose a little bit of weight!". It made me feel like, ok, if you have to drive yourself into the ground trying to get back to a pre thyroid weight and all you can possibly expect is to maybe lose 20lbs, then what is the point? Like, exercise and eat well, yes, of course, take care of yourself, but if it is this fucking impossible to lose weight with a thyroid problem shouldn't we just be focusing on body acceptance or something?
I just felt so frustrated by this book. I ordered "The Root Cause" from the library since that has a lot of good reviews on amazon. Anyone have any book recs? Or cookbooks? I'm a gf vegan.
Thanks for listening to me. I'm sorry for my swearing. I appreciate your support so much.
Just want you to know that I hear you and feel for you.
Meanwhile, you might get some temporary really low tech relief from (believe it or not) calamine lotion.
Also, there is an herbal salve I think you can order on Amazon called "No Bite Me." It is supposed to ward off critters, but I have found it very soothing for my inexplicable hives.
Neither of these is going to ultimately solve the mystery, but you might just get a few blessed minutes of calm.
Feel better!!!
For what it's worth (from a recovering perfectionist), be kind to yourself.
Your going on a trip to a new country. I wouldn't start a diet now unless you have food allergies. I'm a hard-core paleo freak, and I'm telling you right now that if I go to Europe, I'm eating my way across that contintent...NOT as a paleo person :) A few more days isn't going to make or break you. Going on a diet now is setting yourself up for failure.
And, if the steroids help, get them filled for a "just in case" measure. What's it gonna hurt, right?
Finally, I'm hearing from you that you "had" cushings? Was it steroid induced ...and thereby "cured" when you were weaned off steroids?
I'm also hearing about this "rash" all over your body. Do you get it on your face as well as your chest/back/arms? Is it only the "rash" that bugs you most...or are there other symptoms when you're exposed to the sun? If so, what are they?
I ask this as someone who has many "other issues" and your case is sounding more and more like something I'm intimately familiar with.
Lastly, steroids are great if used in the right way and for the right reasons. But, I agree with you - some of the "new" doctors/nurse practitioners/pa's PUSH steroids without thinking of the consequences. Like synthroid, they get a bad rap because they're not often given at the right times or in the right dosages. But, steroids saved my life...so I can't complain too much :) And, your right to be skeptical of these "gurus" who claim "eating right" will end your thyroid disease. It won't. But, they make a great deal of money pushing that idea. It's like saying, "Hey this thyroid thing is all your fault because you didn't eat right, take this supplement or that mineral, and now you need to fix it...but it'll cost ya." It's NOT your fault. Hypothyroidism is a disease like any other that "just happens" as a combination of genetics and environment. I'd skip the mumbo jumbo and get on some thyroid medication. You're not going to get well until you do.
All the vitamins and minerals and supplements in the world do not "cure" hypothyroidism. It's like pouring them down a sivv without the proper medication (thyroid meds).
So, get well and be kind to yourself...and have some fun!
I would get the steroids since this is such a big event. But you are right about not using them long term. Steroids can cause other autoimmune diseases.
As for the weight, I think you have to eat healthy and exercise 20-40 minutes around 4-5 days a week. I gained just over 50 lbs after being Dx'd with thyroid and Addisons. 18 years later I just lost 40 lbs without dieting or extra exercise. I came to accept the bigger me. It's hard enough to deal with being sick. Love yourself no matter what you weigh.
I really hope you enjoy your trip. It sounds wonderful. Let us know how you enjoyed yourself.
@mbutterfly- I am allergic to dairy, which I just found out recently, especially eggs so I am going to avoid those as much as possible...but I think you're right. I should just relax about gluten and maybe allow myself some cheese and desserts and take a lactaid or something. I also decided to fill a topical steroid script just for peace of mind.
Cushings clarification: yes, steroid induced cushing's. I've had bad eczema on my hands/feet since about 2005 w/occasional spots on my arms but suddenly, out of nowhere in 2012, my entire body turned bright red, eczema or redness everywhere. No one has ever explained why this happened. I had begun eating dairy again in 2011 after ten years of being a vegan, so maybe that was partly it? That's when they od'd me on steroids and gave my cuhsing's. I spent about a week at the Mayo Clinic, all they wanted to do was give me more steroids and refused to let me speak with an endocrinologist. I haven't used steroids since 2012.
I do not get a rash on my face. I get it everywhere else. The worst is my arms, hands, chest, neck, back, anywhere the sun hits when you're in a tank top. I can also get it quite badly on my legs and now no longer shave my legs or try to wear shorts.
Other sun symptoms are sometimes a prickly or burning feeling, even if I'm covered and wearing sunscreen (which I always am). Mainly though it's become a horror/panic of heat. Like beyond a dislike, I literally can't stand to feel hot, it makes me freak out, like I am going to die if I don't get cold.
I've been told by doctors that my allergies and rashes are atypical and my eczema is atypical and it seems like I am reacting to something. What? no one knows. In addition to dairy, I also have a nickel and rubber compounding mix allergy. Eliminating these things had helped some but nothing has done the trick.
I was not allergic to the sun ever, until my first summer after cushion's syndrome. Each year it has grown progressively worse :(.
I am on levothyroxine 112mcg but we haven't found the right dose yet. I'm just trying out supplements not as a replacement for meds, which I don't have a problem with, but just as support for my body.
@Lynn- I've been tested for Celiac's, which my sister has, and I don't have it. I have tested positive for a wheat allergy in skin tests, but blood tests have come back negative : / so I have cut it out as a precaution and also bc my dr says it can help with thyroid stuff. I have been gf for maybe four months now?
And thank you for your words of wisdom on weight, I do need to work on accepting the bigger me. It can be hard.
Food allergies are the pits, but they too are indicative of an auto-immune issue.
My immune system is completely freaked out, and I have five auto-immune diseases (not 1...1,2,3,4,5!!!). I also have enough allergies (both food and environmental) that it's not a stretch to say that I'm allergic to the planet earth. Thus the paleo diet. I cannot eat gluten - or I can't breath.
It took a looong time to figure out what was going on with me, but once I was diagnosed properly, i did see some progress...and at least I have tools to manage them. I'm not going to lie. Some days they manage me (man handle would be a better description). But, at least I know what it is..and I know what to do (or not do).
Good luck.