Hey guys! I have been thinking about this post for the past couple weeks, and figured now was as good a time as any to spill. I officially found out two weeks ago that I have low thyroid. (I KNEW I wasn’t crazy!) Ok ok, let me back up a little bit. Well…a LOT bit! If you are a long time RWS reader, you know that last September I got off birth control pills. It’s a long story, so if you want to hear it, check out the post I just linked to above.
ANYWAY, after a year of being off the pill, some of my “symptoms” of the BC pills had not gone away, so I knew there had to be something else wrong. Here are some of the things I have been experiencing that are ALSO thyroid symptoms. (Took a few months for this genius to put two and two together…ha!) This post gets a little TMI so feel free to stop reading…
-hair loss (in clumps, huge clumps)
-sensitivity to cold
-5-10 pound weight gain for no reason
-low body temperature
-extreme exhaustion (I was taking naps several times a week & sleeping 9-10 hours at night)
-irregular menstrual cycle (haven’t had a period since January)
-trouble focusing or thinking clearly
-crappy training runs where I just felt SO tired and dead legs
There are a few others, but these are the main ones I was experiencing. The irregular cycle one is the symptom that bothered me the most…I had been off the pill for awhile and thought things would get back to normal. I am not super skinny and had stopped running after my painful and injury-filled half marathon in February…so I wasn’t sure what the problem was, but obviously there was one. Wanting to have a family someday, I knew I had to get this figured out.
By a random occurrence, I met a man at my gym one day who started talking to me about a book he is writing, and we got to talking and he told me he bet I had low thyroid and I should get tested. He told me the regular blood tests that doctors do would probably tell me that I was fine, and that I needed to do a mouth/saliva swab. I didn’t know a lot about this, so I did the blood test just to be safe, and as predicted, it came back clear. I then did some googling and found some sites discussing the mouth swab he told me about, and decided to give it a try. To give you an example, here is one article:
I figure why not, it can’t hurt, so he got me in touch with a doctor. About 6 weeks later, I got a phone call and found out I was low in T3 and T4. (I don’t really understand all the lingo, even after doing some research it still is a little foggy to me!) I was given two different medicines, and in a month I will re-swab so they can monitor me and see if they need to raise or lower my dosage. I was told I would start feeling better soon (this was two weeks ago.)
So, I am sure you are all wondering about my “results.” I am happy to report the fatigue is going away. I haven’t taken a single nap since I started the meds, and I sleep an average of 8 hours a night (well, except for the night after the half marathon!) I am focusing better, haven’t been freezing in my house, and the best news, I got my monthly visitor (of course it was the DAY before my half marathon…not ideal, but hey I am NOT complaining!)
Katie and I at packet pickup for the Gulf Coast Half Marathon last weekend.
I was told it could take some time for everything to go totally normal (the weight gain could take awhile to go away, my running may take awhile to improve, my hair may still fall out for awhile, etc.) but, so far I am pretty pleased! It is good to actually know what’s wrong and work towards a solution instead of just having random things happen to your body and you don’t know why.
If you think you may be suffering from low thyroid, I recommend finding a doctor who will do a saliva test, NOT a blood test! (Of course this is my own personal opinion as I am not a doctor.) I guess what I am saying is be your own advocate. Don’t just sit around thinking “something is wrong!” Do some research, go to a doctor, and if you don’t like what they have to say get another opinion! I will keep you all updated as I progress on how my other symptoms fade and (hopefully) go away and if my dosage changes.
QOTD: Has there ever been a time when you had to fight for yourself when you knew something wasn’t right with your body?
So glad you got it figured out!!! Low thyroid can seriously mess with a person. I know when my meds are “off”, I feel so crazed!
yyyeesss! I still dont feel 100% but def see improvement!
I’m so sorry you are dealing with this, but glad that you’ve finally figured out what’s going on with your body. I hope you’re able to get it completely under control and it sounds like, for the most part, you have. 🙂
thanks! it feels good to know I wasn’t crazy!
I’m glad you were able to figure out what was wrong! I have wondered about my thyroid from time to time as well (especially after two co-workers were diagnosed with thyroid cancer…) I hope the meds continue to help as well – I’m sure it will help your training and crazy expo weekends 🙂
Being your own health advocate is so, so important! I’m glad you got to the bottom of this and am delighted to hear you’re starting to feel better. Yay! 🙂
Hmm, I am going to have to look into this! I am really glad you found a solution and posted about your experience, but sorry you have to go through this.
Awhile ago I had bloodwork come back that I was having some really low counts with the T3 I believe or T4 that you mentioned. Hashimoto’s Disease (a thyroid autoimmune disease) runs in my family and it would explain why I’m always so freaking tired, hair is always falling out and very thin, anxiety/depression symptoms, etc. so it made sense. My doctor made me go for more extensive bloodwork, did an ultrasound of my throid to rule out cancer, etc. and then he said it came back the second time fine so we’ll just wait another year to test again to basically wait for it to get worse.
It’s really frustrating feeling like something is wrong and nothing is being done about it… add that to the fact that my employer is dropping my insurance for another option and now I will have to find all new doctors as the ones I used don’t appear to be covered under the new insurance… makes it hard to figure out what to do.
I’m definitely going to look into this saliva testing… maybe this would give more conclusive results!
Did you join the Canary Club in the link you posted to get tested?
whats the canary club?
I remember you talking about this laura! yes yes, find a dr. that will do the saliva test!
Heather, thanks for writing this story. I have been in the dark for two and a half years and think maybe this may help me. I haven’t had a cycle since August of 2008! I’m not sure if the other symptoms apply to me (or if I’m just lazy) but it is worth checking out. I am actually going to a new doctor this week and will be talking to him about these things. Thank you!
Wow! That’s awful but I am so glad you were able to discover what was making you feel bad and that you are starting to feel better. How crazy about meeting that guy in the gym; “signs” in different ways/forms really show up our lives, don’t they? I was lucky to grow up with a mom who is a nurse, so she always taught me to advocate for my health. I hope you start feeling 110% soon!
yes! I totally dont think it was coincidence, def. a God thing!
My thyroid has been messed up for years. Only when I decided to do the research and dictate my own treatment has it otten better. Although last time I went for a med change my regular dr wasn’t there and got a sub. He told me he wouldn’t change my meds because of one of the labs results, when I pointed out another lab value that I felt warranted the change, he told me I just had a lucky lab day. ???? In 12 yrs of testing I only had a lucky lab day the month I changed meds to desiccated thyroid? Ridiculous. Hope youcintinue to improve!!
wow that is so weird!
so happy to hear you are on the mend. it can be frustrating when you have no idea what is wrong or how to fix it.
You’re the 2nd person I “know” now who has had this happen to them. A friend of mine struggled with symptoms for years, even having to go as far as leaving grad school for a semester because she was too tired/couldn’t concentrate. She’s little (like you) so even when she asked for a thyroid test they wouldn’t do it b/c usually that happens with heavyset people. Luckily she finally did get some tests and was able to get on meds, but it too so long to bounce back because she was sick for so long. Scary.
For me I had similar issues back in high school and it turned out they diagnosed me with polycystic ovarian syndrome. Which I just found out is in the same family as diabetes, and my insurance won’t touch me for it. Ugg. I wish I had known at 17 how to advocate because there is a good chance I don’t really have it (the full blown syndrome) b/c I don’t have any other symptoms other than cysts, so I may JUST HAVE CYSTS (and that’s not a big deal at all) unfortunately you can’t have that diagnosis overturned…so I’m doomed.
My only other weird story (why am I sharing so much? Ha) is that a few years ago I was getting tired all the time and generally sick. Then I started waking in the night with horrible pain. Sweating and freezing all at the same time, no feelings in my arms. I thought I was having heart attacks. The DRs blew me off as having anxiety or stress and acid reflux. They threw meds at me and didn’t listen when I said they weren’t working and it wasn’t stress. FINALLY after months and months of suffering they did an ultrasound and discovered my gallbladder had gone haywire. It was so severe the stones had like turned to mush and were dumping into my stomach! ick! When they actually removed the thing, it was fused to my liver. So I totally stress speaking up for yourself too!
oh my gosh you poor thing! how stressful! I’ so sorry! glad you found some answers, I hate insurance.
well, let me tell you, i was diagnosed at 24 years of age and i am now 42. i see my endo every year and blood is taken and my dosage of synthroid is tweaked. i, unlike you, had no symptoms of low thyroid as i am slim and always have been. all of the other typical symptoms…i just was not having at all. my thyroid was enlarged and was clinically called “goiter.” i was given lots of blood work and prescription medication and my thyroid shrunk back down to a normal lever. the only thing i notice still that i suffer from is the sensitivity to cold. i just cannot take the cold.
you will feel better with the right meds. thanks for sharing and you are not alone 🙂
glad you have it under control! I am on armour and something else…dont remember the name! I hate being cold!
Wow, glad you found out what was going on and are feeling better now!
Thanks for sharing!! Glad you found out what was wrong and are starting to feel better. That is really interesting to hear about the saliva test. I too, thought there might be something wrong with my thyroid and did the blood test and it came back normal so now I’ll look into the saliva test.
yes! be sure to find a dr. who will do it, they all dont.
Yes, yes, yes! Very recently, in fact! I am very severely ADHD and being off of my medication during my pregnancy has been very difficult on me. I want to nurse when Baby Key arrives but have been told by every doctor that I will still have to stay off of my meds while I do so. Being off my meds this long has been difficult enough and I needed some alternative but I didn’t feel I was getting any help from any doctor. I started doing my own investigation and was able to bring some options to my doctor and we now have a new plan! When in doubt, YOU have to do what is best for YOU!
I have pretty severe ADD! I would LOVE to hear what ideas and plan you have come up with 🙂
so glad you did your own research! yay!
I’m so glad that you were able to finally figure out what was up! When I have clients come in who look like they have depression, I always ask them to get checked for thyroid functioning as well. I hope now that you know what it is you are able to find the right meds to help you out!
good! a lot of people wouldn’t do that.
That was really interesting, thanks for sharing! I’ve had at least 3 thyroid tests since 2006 for very similar symptoms, and the blood tests are always normal (“but slightly sluggish” as my rheumatologist said). I’m gonna ask him about the saliva test…
yes! be careful though, some docs don’t “believe” in that and won’t do it so you may have to search around…
Oh wow, that must have been so scary (the period loss thing)! I am so glad you know what’s going on and are taking the first steps toward getting better! 🙂
me to! it was scary!
So glad that you figured out what was going on!
I’ve been having a lot of stomach issues since the beginning of the year. Intense stomach cramping, loss of appetite, etc.
I was tested for gastritis (inflammation of the stomach lining) but those results came back negative. I’ve tried eliminating things (like gluten) from my diet and it has sort of been working, but I’m not 100% convinced.
I hope you figure out the problem, thats so frustrating.
I should probably just e-mail you instead, b/c this could be long winded. I’ll keep it brief. I also have thyroid disease, but I have Grave’s Disease, hyperthyroid. A lot of similar symptoms though like hair loss and just feeling like your straight crazy half the time. Yet blood tests don’t confirm you’re crazy, so you feel even crazier, thinking you are crazy yet nothing confirms this. You catch my drift.
I did the same thing w/ going off bc, trying to regulate or just get my period. Blah blah. Long story short, they FINALLY got it under control. 2 years later we had our baby girl. I say this to encourage you, and to sympathize. Gosh, thyroid stuff can SUCK, it does suck! Oh my goodness, I KNOW, it’s not fun!!!! Hang in there! Sometimes talking to people who have legitimately gone through it can be comforting, if nothing else. I’m totally here to talk, or just to listen to you vent if you want 🙂
Thanks for sharing and being open about it too 🙂
wow! thanks so much for sharing, I appreciate it! So glad you got your baby girl! my hair is still falling out but hopefully that changes!
I was diagnosed with hypo-throid 10 years ago and continue to get blood work every year to tweak my meds. I’ve had to increase it lately but now it seems under control. I’ve never heard of the saliva swab. Maybe I should ask about it- sounds like it’s more reliable.
yes!!!
I’m a frequent blog reader of yours and I just want to thank you for sharing this story!
I was diagnosed w/low thyroid several years ago and had all the classic symptoms. My running suffered dramatically and it was bumming me out. Once I was on meds, things became 110% better. I recently had some blood work done to see where my levels currently are and I was off the charts again (I had a sneaking suspicion that something was going on) so I needed my meds adjusted. It’s crazy how “off” you feel when your thyroid isn’t functioning properly.
Thanks again for sharing!
I just found your blog! I am so glad I read this post. I have been convinced something is wrong with my thyroid over the past year or so. i have hair loss, weight gain, coldness, really rigid nails, and recently enlarged thyroid nodules (all developed in the past year). i had the nodules biopsied and they are non-cancerous. and my blood test for my levels came back fine. i haven’t been satisfied with that answer. i have an appointment next week and i’m definitely going to talk to them about the saliva test. i have done tons of research but this is my first time hearing about the saliva test!
My advice is call and find a dr who will
Do a saliva test on you. Good luck! I hope you get answers!
Any idea where I would even start trying to find a doctor that does them?