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 guys-
I hope everyone is doing well. I read almost every post on this board, but rarely comment because I just don't feel I've been dealing with Hypo long enough to have much advise to give, but my thoughts are with all of your during your struggles. You give me so much hope and inspiration.
I'm currently on 125mcg of levothyroxine. I started that dosage in late July and just saw my doctor last week. Here's my current thyroid bloodwork from 9/25:
FREE T4: 1.15 (range .93-1.70 ng/dl)
TSH: 1.26 (range 0.270-4.200 mIU/L)
My doc didn't run my T3 (which is "TRIIODOTHYRONINE" right?) for my 9/25 test but here's where it was at in July when she did test it:
T3: 93 (range 80-200)
Since I was diagnosed in March, I have gained 15 pounds despite various efforts (dropping dairy, gluten and some exercise stuff I'll get into in a sec) to at least stay the same weight (I was 200lbs) I was in March @my hypo diagnosis. This represents a 63lb weight gain for me since I became full blown hypo in winter of 2014, of course I went over a year w/out a diagnosis, which didn't help
When first diagnosed I was trying to do an hour of light physical activity a day (walking and yoga). But hurt my knee, had to stop for about six weeks while I did PT. Then, I did another six weeks once PT was done of a combo of stationary bike, strength training and trampoline but had to stop again once I started school because with the added work of school, my boyfriend pointed out to me that if I went to school *and* worked out, I would take a three hour nap every afternoon and be stressed about not getting homework done and not get any writing done (I'm a writer). So I've been off working out for the last month or so, waiting for this next dr apt.
At the dr apt I told her I basically feel like I have exactly enough energy to get through the day but if I add anything like working out or cleaning the bathroom, I have to sleep all afternoon. So she decided to add some T3 to my regimen, 25mcg of liothyronine. I've been on it for a week. I got my period the day I started it, so I don't know if I've noticed a huge difference yet energy wise. I take my levo and my lio at night before bed. I am sleeping better. And I will say that I've had the most normal period I've had in years, without feeling like a total psycho with a million random period symptoms and being stuck in bed with awful cramps and heavy bleeding for two days. I also took a nap yesterday that was like 20 minutes long and refreshing, and I don't think I've taken a nap less than 2 hours long in about 2 years.
I will say that weight and energy aside, I *DO* feel better than I did seven months ago when I started. I'm no longer suicidal, crippling depressed, I have better attention span, I'm writing again, I'm reading again. I even got a job on the weekends, where as before I didn't work for a year. So, the weight is frustrating but I want to be clear there have been improvements and that overall my goal is not to be "skinny" or whatever but to be healthy and at least not keep gaining. My dr does not know why I keep gaining, which freaks me out.
My dr ran hormone tests this last round of blood work which I requested bc someone on this group told me to get it checked out. My hormones came back from the lab saying they were consistent with premenopausal. I'm 34 and get a period every month. And I would like to have children one day. Here's what they look like:
ESTRADOL: 21 (no range given but I believe that's very low)
TESTOSTERONE: 6 (range: 9-55)
DEHYDROEPIANDROSTERONE SULFATE: 56 (range 45-270)
So she wants me to go see an endocrinologist. I sent my information to the University of Maryland and am waiting to hear back for an apt. As some of you may remember, I was recovering from exogenous Cushing's Syndrome before I got hypothyroid. She thinks they'll run more test on my adrenals to see if they're still not functioning properly with equipment she doesn't have in addition to figuring out why my hormones are so low.
I guess right now, I just feel scared. What's wrong with me? Am I going to be okay? Will I ever have kids? Will I ever have a respite from this? Will I ever feel like myself again? I'm scared the endocrinologist is going to be mean or rude or awful or find out something even more scary is going on. My maternal grandmother hit menopause in her late thirties/early forties (my mom was a menopause baby) and died of ovarian cancer later.
I feel like the human manifestation of this emoji:
I'm afraid of more tests and more bad news. Idk. I know the more info you have the better and I'm grateful for my doctor and this group and my medicine but, I am afraid.
I also feel like psychologically, i'm starting to get "weird" about everything from being sick for so long, like I feel afraid of the generic cytomel I'm taking (or any time I have to increase my levo dosage)...I know that sounds crazy. Like I want to take it if it will help me, but I'm like so over sensitive to body cues and just anxiety filled about medicine/illness these days, I feel like I'm constantly waiting to have a heart attack and any little thing I feel in my heart means I'm about to die or going to get cancer or have an aneurism or something. cytomel is safe, right? i read the pamphlet that came with it throughly and i know many of you take it and have found it to be helpful. sorry to sound crazy. the first night i took it, i had a full blown panic attack right after I swallowed for about two hours.
As an aside, I also found out that for about six weeks I was taking like 9x the amount of antihistamine I needed to (zyrtec). I'm fine, I never felt weird or sick, I actually didn't notice any difference, and I told my doctor about it and she was just like "don't do that again" but I feel like I keep waiting for my liver to explode or something and I can't stop thinking/obsessing about it. I've probably read every article on the internet about zyrtec overdosing at this point even though I've had no side effects or anything. Like why am I so stupid? I've been drinking all this detox tea. I'm so paranoid about overdosing or mixing medications, I always have been, so how did this happen? I think I just got so stressed out with school and all this thyroid shit and starting a new job and everything that I just didn't think about what i was doing. Like does anyone else ever feel like they're so busy taking care of themselves that they just blank out or do something stupid? I don't know if I'm explaining myself well. I feel like my body is so messed up, I can't put anything else in jeopardy, so how did I end up doing something so unusual and potentially harmful to myself? I think sometimes I just get exhausted and tired of thinking about things. I'm embarrassed to even talk about it.
Sorry, i feel like this post has been all over the map. I guess what I'm trying to say is: I think I am doing better over all, but I am still overwhelmed and struggling and sometimes just being dumb?
Ok. Thanks, as always, for listening.
PS. I bought the book "The Root Cause" about thyroid illness and I feel like it's the first 'real' book I've read about hypothyroidism that isn't trying to sell me anything or isn't a weird diet. Lots of great info.
I hope everyone is doing well. I read almost every post on this board, but rarely comment because I just don't feel I've been dealing with Hypo long enough to have much advise to give, but my thoughts are with all of your during your struggles. You give me so much hope and inspiration.
I'm currently on 125mcg of levothyroxine. I started that dosage in late July and just saw my doctor last week. Here's my current thyroid bloodwork from 9/25:
FREE T4: 1.15 (range .93-1.70 ng/dl)
TSH: 1.26 (range 0.270-4.200 mIU/L)
My doc didn't run my T3 (which is "TRIIODOTHYRONINE" right?) for my 9/25 test but here's where it was at in July when she did test it:
T3: 93 (range 80-200)
Since I was diagnosed in March, I have gained 15 pounds despite various efforts (dropping dairy, gluten and some exercise stuff I'll get into in a sec) to at least stay the same weight (I was 200lbs) I was in March @my hypo diagnosis. This represents a 63lb weight gain for me since I became full blown hypo in winter of 2014, of course I went over a year w/out a diagnosis, which didn't help
When first diagnosed I was trying to do an hour of light physical activity a day (walking and yoga). But hurt my knee, had to stop for about six weeks while I did PT. Then, I did another six weeks once PT was done of a combo of stationary bike, strength training and trampoline but had to stop again once I started school because with the added work of school, my boyfriend pointed out to me that if I went to school *and* worked out, I would take a three hour nap every afternoon and be stressed about not getting homework done and not get any writing done (I'm a writer). So I've been off working out for the last month or so, waiting for this next dr apt.
At the dr apt I told her I basically feel like I have exactly enough energy to get through the day but if I add anything like working out or cleaning the bathroom, I have to sleep all afternoon. So she decided to add some T3 to my regimen, 25mcg of liothyronine. I've been on it for a week. I got my period the day I started it, so I don't know if I've noticed a huge difference yet energy wise. I take my levo and my lio at night before bed. I am sleeping better. And I will say that I've had the most normal period I've had in years, without feeling like a total psycho with a million random period symptoms and being stuck in bed with awful cramps and heavy bleeding for two days. I also took a nap yesterday that was like 20 minutes long and refreshing, and I don't think I've taken a nap less than 2 hours long in about 2 years.
I will say that weight and energy aside, I *DO* feel better than I did seven months ago when I started. I'm no longer suicidal, crippling depressed, I have better attention span, I'm writing again, I'm reading again. I even got a job on the weekends, where as before I didn't work for a year. So, the weight is frustrating but I want to be clear there have been improvements and that overall my goal is not to be "skinny" or whatever but to be healthy and at least not keep gaining. My dr does not know why I keep gaining, which freaks me out.
My dr ran hormone tests this last round of blood work which I requested bc someone on this group told me to get it checked out. My hormones came back from the lab saying they were consistent with premenopausal. I'm 34 and get a period every month. And I would like to have children one day. Here's what they look like:
ESTRADOL: 21 (no range given but I believe that's very low)
TESTOSTERONE: 6 (range: 9-55)
DEHYDROEPIANDROSTERONE SULFATE: 56 (range 45-270)
So she wants me to go see an endocrinologist. I sent my information to the University of Maryland and am waiting to hear back for an apt. As some of you may remember, I was recovering from exogenous Cushing's Syndrome before I got hypothyroid. She thinks they'll run more test on my adrenals to see if they're still not functioning properly with equipment she doesn't have in addition to figuring out why my hormones are so low.
I guess right now, I just feel scared. What's wrong with me? Am I going to be okay? Will I ever have kids? Will I ever have a respite from this? Will I ever feel like myself again? I'm scared the endocrinologist is going to be mean or rude or awful or find out something even more scary is going on. My maternal grandmother hit menopause in her late thirties/early forties (my mom was a menopause baby) and died of ovarian cancer later.
I feel like the human manifestation of this emoji:
I'm afraid of more tests and more bad news. Idk. I know the more info you have the better and I'm grateful for my doctor and this group and my medicine but, I am afraid.
I also feel like psychologically, i'm starting to get "weird" about everything from being sick for so long, like I feel afraid of the generic cytomel I'm taking (or any time I have to increase my levo dosage)...I know that sounds crazy. Like I want to take it if it will help me, but I'm like so over sensitive to body cues and just anxiety filled about medicine/illness these days, I feel like I'm constantly waiting to have a heart attack and any little thing I feel in my heart means I'm about to die or going to get cancer or have an aneurism or something. cytomel is safe, right? i read the pamphlet that came with it throughly and i know many of you take it and have found it to be helpful. sorry to sound crazy. the first night i took it, i had a full blown panic attack right after I swallowed for about two hours.
As an aside, I also found out that for about six weeks I was taking like 9x the amount of antihistamine I needed to (zyrtec). I'm fine, I never felt weird or sick, I actually didn't notice any difference, and I told my doctor about it and she was just like "don't do that again" but I feel like I keep waiting for my liver to explode or something and I can't stop thinking/obsessing about it. I've probably read every article on the internet about zyrtec overdosing at this point even though I've had no side effects or anything. Like why am I so stupid? I've been drinking all this detox tea. I'm so paranoid about overdosing or mixing medications, I always have been, so how did this happen? I think I just got so stressed out with school and all this thyroid shit and starting a new job and everything that I just didn't think about what i was doing. Like does anyone else ever feel like they're so busy taking care of themselves that they just blank out or do something stupid? I don't know if I'm explaining myself well. I feel like my body is so messed up, I can't put anything else in jeopardy, so how did I end up doing something so unusual and potentially harmful to myself? I think sometimes I just get exhausted and tired of thinking about things. I'm embarrassed to even talk about it.
Sorry, i feel like this post has been all over the map. I guess what I'm trying to say is: I think I am doing better over all, but I am still overwhelmed and struggling and sometimes just being dumb?
Ok. Thanks, as always, for listening.
PS. I bought the book "The Root Cause" about thyroid illness and I feel like it's the first 'real' book I've read about hypothyroidism that isn't trying to sell me anything or isn't a weird diet. Lots of great info.
I understand how scary and overwhelming it can all be. The sooner you guys can find all of the pieces of what's broken the sooner you can fix it. I don't know much about the other hormones you had tested but hopefully those are just being affected by the low thyroid and they'll bounce back as you improve. If not the doctors probably have medicines for that too.
Don't beat yourself up too much about the allergy medicine! We all do stupid spacey stuff from time to time. I could tell you about the time I almost burned down my house because I turned something on on the stove and then left for two hours. Or the time I left the grocery store and forgot I had driven a car and started walking home.
I'm so happy for you though that you have doctors that are testing and treating you, and that you're slowly getting better! Keep us posted on your progess
Take Care and Keep Writing. We are here.
Do I *ever* understand! There's NOTHING pretty about hypothyroidism. And, unfortunately, nothing fast about it either. :(
Think of "balancing" your thyroid as a "process". It's not a one-shot deal. I'm going to list a link...don't read it while you're overwhelmed it'll just make matters worse. But, when you feel you're calm...and you want to find out more check it out k?
It took me 18 months of working with my doctor to "balance" my thyroid and the guidance of a thyroid guru to "hold my hand" through much of it. I met her here, and she's still my go-to gal when I need help and can't think straight (usually fall, when I need an uptick in meds).
It DOES get better, but not immediately. And somethings will get better while others get worse until you're at YOUR optimal. The most important thing is: Listen to your body, and never give up. And, it looks like you're doing both.
Here's the link:
http://www.dailystrength.org/groups/thyroid-resources/discussions/messages/17754063
thank you for listening. thank you for making me feel supported and calming me down. thank you for helping me to feel like i'm not crazy. i appreciate it more than i can express. i'm so happy you are people in this world and i'm so grateful this group exists.
Looks like you have a conversion problem.
Im going to presume you have hashimotos but could you tell us your antibody numbers? If you dont have hashimotos (9/10 hypo do) disregard the below info.
Adding t3 is a good band aid. but its possibly not going to fix the symptoms.
The problem is a lot of people think balancing your thyroid levels will make you feel better. If you hashimotos, thats often not the case.
The reason is its an auto immune disease.
Dont think of thyroid, think of the entire body, thats what uses thyroid hormones.
For me the problem is inflammation, due to a very bad diet, binge drinking for years and the biggest cause ANXIETY and STRESS.
Cortisol is the silent killer and can do a lot more harm than auto immunity.
The reality is its often a multi triggered event. You need to figure out what your triggers were/are to improve your conversion and lower your antibodies.
In order the body processes the hormones Liver, digestion, general tissue brain.
So from that you can look at things like, how healthy is my liver, how good is my digestion, do i get rashes on my skin, do i have brain fog etc etc. I cant guide you through that process as Im not a holistic dr, but you can ask for tests on your liver for example.
You took 25mcg of Cytomel in one titration? No wonder you had a panic attack. I get a couple of days increased anxiety every 8mcg of T3/Cytomel. If you have tablets, try breaking them so you can take them at periods throughout the day. Not only does this spread the T3 which is rapidly absorbed by the body, but it may help with the anxiety. My old Dr when I use to get Cytomel said he usually titrates 5mcg every week or so.
Essentially that much T3 is going to feel like a hashis attack on your thyroid, releasing vast amounts of T3 into the blood stream, with anxiety being one of the main symptoms.
All of the above is just opinion, not medical advise as none of us here are Dr's and in a position to give you such.
Best of luck.