Tell me about your thyroid

[sillygoosegirl]

We have a lot of people here who have hypothyroidism, right? I want to hear about your experiences.

I'm hypopituitary, which means there is some significant chance I'll also be hypothyroid, now or in the future, though it seems that secondary hypothyroidism is harder to detect with lab work than the more common primary hypothyroidism or hypothyroidism from hashimoto's. Basically if my T4 drops 20% from a baseline taken when I was already sick, they'd start me on replacement hormones. They can start me on replacement hormones sooner if I'm symptomatic. So far it's dropped 13.5% in a year, and I think I may be sympathetic. Although it's hard to say if I'm symptomatic... because doesn't everyone struggle with fatigue and weight gain? My friends who have talked on social media about having hypothyroidism certainly seemed like they were suffering more than I am, but... it's all so subjective. (TSH is apparently not a useful measurement at all when the root cause is pituitary disfunction.)

I sent my endocrinologist a message with all this, and she said, pretty much, "sure, I can call in the Rx." Which is basically what I wanted, but I wish it wasn't based on subjective evaluation of symptoms and I didn't feel like I was diagnosing myself.

But since that's basically where I'm at... what's it like being hypothyroid for you? What was it like before treatment? And after? Are there other questions I should be asking before starting this medication?

Is the fact that I've been able to ride my bike 250 miles this month a sign that I'm really not doing that bad? What if I followed that up by saying I'm still getting fatter (around the waist, not muscle mass), and am so tired sometimes that I'm a little afraid I won't be able to keep my eyes open for the whole ride (literally never had this problem cycling before... it tends to keep a person awake)?

[timorousbeastie]

I've had hypothyroidism for 14 years. In my case, it's secondary to radiation. I didn't even realize I was symptomatic until after my diagnosis and started Synthroid (since it's a known result of the radiation I received, my oncologist was monitoring me for it), since, like you said, isn't everyone tired and gaining weight? At this point, I can easily tell when my Synthroid needs to be adjusted because I feel completely exhausted all the time. Given your fatigue, it may be worth trying out medication for a few weeks/months (it can take a while for the effects to show) to see if it helps. The side effects are pretty minimal/non-existent.

Not to freak you out, but given what you said about almost falling asleep while bike riding - do you ever have heart palpitations? Or shortness of breath? Fatigue during exercise can be a symptom of atrial fibrillation. Hopefully it's just your thyroid, but I'd probably want my heart checked out, too,if I were you.

[atarianna]

I was extremely hyperthyroid, so not what you’re asking but just wanted to toss in my two cents since you are considering medication and your TSH isn’t a good measurement on where you are symptom wise.

If you do begin taking medication and start experiencing anxiety, heart palipitations (I thought they were panic attacks), sleeplessness, rapid and extreme weight loss, extreme hunger and/or sudden bursts of anger, you could be hyPERthyroid.

People jokingly wish that they could be hyper instead of hypo, but it nearly cost me my life in more than one way. It was horrific. I think it is good that your doctor is giving the OK for a script and think you should begin taking synthroid, however just watch yourself and make sure you don’t overmedicate and cause a host of other issues.

[Ashley&Scott]

I was diagnosed as hypothyroid last fall & started meds. I thought I was just exhausted because I had a 1 year old. I was so tired I had to fight falling asleep at work & went to bed at 8:30 every night but woke up feeling like I hadn’t slept at all. Once I started the meds my energy level bounced back up to normal pretty quickly, I also stopped gaining weight. It was like a night & day difference. I would try the meds & see if they help you, good luck!

[sillygoosegirl]

May 20, 2019 19:40:31 GMT -5 timorousbeastie said:

Not to freak you out, but given what you said about almost falling asleep while bike riding - do you ever have heart palpitations? Or shortness of breath? Fatigue during exercise can be a symptom of atrial fibrillation. Hopefully it's just your thyroid, but I'd probably want my heart checked out, too,if I were you.

I hadn't considered this at all, but I don't think I've noticed my heart during exercise in quite a while. Or my breath very much, unless my mouth is dry. I hadn't thought about it consciously at all, but for whatever reason I'm not noticing those things much anymore compared with in the past. I wonder if this is why lately I've percieved myself to be somehow more fit/capable, yet also more lazy, than I ever have been before. Now I wish I was a fitbit user...

[joy]

Is your T4 out of the normal range? Is your T3 out of the normal range?

Basically, thyroids are a dicey business. You can get 100% lost in details and test results and interventions. You can also find a doctor who will look at your numbers and tell you anything from you’re fine to you’re not. It’s a nebulous and confusing area.

After being diagnosed with Hashimotos, going down the rabbit hole and coming back, this is where I stand: let free T4, free T3 and how you feel guide you. Most doctors just look at TSH because you can theoretically infer T4 from it but it’s not always that simple. If your T4 is drifting low over time then yes, I’d think it’s time to consider synthroid/levothyroxine.

Symptoms vary so wildly. And aren’t always attributable to thyroids. Example - I was so tired and foggy since my daughter was born. Obviously. “Thyroid fine, just get more sleep!”

Yeah, I was working on becoming severely anemic due to other unknown things going on. More Synthroid would not have helped and possibly hurt me.

Tread carefully, be open to other answers, be okay with some trial and error.
Good luck!

[sillygoosegirl]

May 21, 2019 8:22:35 GMT -5 joy said:

Is your T4 out of the normal range? Is your T3 out of the normal range?

Basically, thyroids are a dicey business. You can get 100% lost in details and test results and interventions. You can also find a doctor who will look at your numbers and tell you anything from you’re fine to you’re not. It’s a nebulous and confusing area.

After being diagnosed with Hashimotos, going down the rabbit hole and coming back, this is where I stand: let free T4, free T3 and how you feel guide you. Most doctors just look at TSH because you can theoretically infer T4 from it but it’s not always that simple. If your T4 is drifting low over time then yes, I’d think it’s time to consider synthroid/levothyroxine.

Symptoms vary so wildly. And aren’t always attributable to thyroids. Example - I was so tired and foggy since my daughter was born. Obviously. “Thyroid fine, just get more sleep!”

Yeah, I was working on becoming severely anemic due to other unknown things going on. More Synthroid would not have helped and possibly hurt me.

Tread carefully, be open to other answers, be okay with some trial and error.
Good luck!

My T4 is 1.09 (so still normal), down from 1.26 a year ago when it was first measured, which was 3 months after my pituitary suddenly stopped making antidiuretic hormone, but like 6-9 months after I started feeling so fatigued and gaining weight. They haven't checked my T3 yet (not sure why), and while my endocrinologist checks my TSH every 6 months, she says the fact that it's normal doesn't really confirm it's working (presumably if it went high or low, that'll be a clue of something though... like if it was low, I'd almost for sure be hypothyroid, and if it was high, it might suggest a hormone-secreting tumor too small for my MRIs to resolve).

The assumption is that my thyroid is likely still working just fine, but my pituitary is not stimulating it enough. Apparently it's common for hypopituitary patients to still make a "normal" amount of TSH, but if it's insufficient to tell the thyroid to make enough T4 (because the pituitary side of feedback loop is broken), then really it's not making enough. Standard of care for pituitary patients seems to be to monitor T4 and keep it in the mid to high end of the reference range, and ignore TSH completely. Which is encouraging since I read on so many websites anecdotes saying the same as you, that this is quite possibly how even primary hypothyroid should be managed (from a lab perspective, along with how I feel, obviously).

I'll definitely remain open to other things as the cause. Literally any of my pituitary hormones might be screwy... most likely low, but since they don't know how to test for pituitary antibodies, they actually don't know for sure whether I have an autoimmune disorder of the pituitary (the most likely), head trauma (also likely given onset of symptoms relative to an otherwise relatively minor whiplash injury), or something else like a hormone-secreting micro-tumor on my pituitary. My first guess is actually that the real problem is oxytocin deficiency, but there hasn't been enough research on that to know how to detect deficiency or how to replace it... so I do feel a little like I'm looking for my keys where there's light to see, rather than where I think I dropped them.

[joy]

sillygoosegirl - oof! That’s a lot going on!

Since an impairment of converting T4 to T3 is rare, many doctors won’t test free T3 either. Sigh. Thyroids are sooooo messy.

When I was diagnosed, my T4 and T3 were out of range low and my TSH was 13. They put me on 75 mcg of levothyroxine and I was a mess with migraines. They overshot my dosage so we backed off to 25 mcg with the idea of increasing slowly. I never left 25 mcg! That was all I needed even though my numbers were so bad. Lol.

I was foggy, tired, always cold but intolerant of heat. Sadly, I’m still many of these things. But I have more energy!

[luckystar2]

Fatigue was a big one for me but honestly I’m fatigued still lol! But back before I was diagnosed I was in college and needed so much sleep. Wasn’t normal for that age!

If you feel fatigue and it’s possible it’s thyroid Id just try some medication. If it’s too much you’ll have hyper symptoms. Generally my dr will go by my symptoms. Last year my numbers were normal but a little off for me and I was fatigued so we upped my dose. But my anxiety skyrocketed so we reduced the dose. Was easy enough to recognize and just cut back. I actually think my sweet spot would be a dose in between the 2 cause I still feel a lot of fatigue on lower dose.

[rupertpenny]

I'll echo PP and say might as well try medication.

Honestly your experience of doing lots of exercise, still gaining, weight, and still feeling extreme fatigue sounds familiar. Before I was diagnosed I still managed to go to work every day, exercise 4-5 times a week, complete basic chores, etc. but I could barely keep my eyes open in the afternoon and I was still gaining weight. Even when properly medicated I still gain wait easily and feel tired all the time, but there is no comparison to how bad it was before.

[dcrunnergirl52]

May 20, 2019 19:45:30 GMT -5 atarianna said:

I was extremely hyperthyroid, so not what you’re asking but just wanted to toss in my two cents since you are considering medication and your TSH isn’t a good measurement on where you are symptom wise.

If you do begin taking medication and start experiencing anxiety, heart palipitations (I thought they were panic attacks), sleeplessness, rapid and extreme weight loss, extreme hunger and/or sudden bursts of anger, you could be hyPERthyroid.

People jokingly wish that they could be hyper instead of hypo, but it nearly cost me my life in more than one way. It was horrific. I think it is good that your doctor is giving the OK for a script and think you should begin taking synthroid, however just watch yourself and make sure you don’t overmedicate and cause a host of other issues.

Being hyperthyroid was so much worse than hypo. I was hypo and on levoxyl since college, and then after I had DS3 last year, I noticed around 4 months post-partum that my anger and irritability were over the top. I had harmful thoughts b/c I was so depressed with how anxious and angry I was at the world. I was also randomly breaking out into dripping sweat for no reason at all. I finally realized this wasn't normal when I was standing in Kohls and thought I was going to die b/c I was so hot, sweat dripping down my face, and I stripped down to just my tank top, when everyone else around me had on coats and sweaters. It was awful.

I went to my endo, and my thyroid had flipped to being extremely hyper (post-partum thyroiditis) and I was also on levoxyl at the time, which was making it even worse. I was put on methimizole to reduce the hyperthyroid, and life was SO much better almost immediately. My endo has monitored me since then every 3-6w, and I'm now starting to go back toward hypothyroid. I'm actually not on any meds at the moment.

So, all this to say, listen to your body. If you aren't feeling right, talk to an endo and try meds if you think it will help. 

[wanderlustmom]

I’ve had Hashimotos for 20 years and I never notice the lows but I hate the hyper. Thyroid issues are so complex! The best advice I can give is to find a great endocrinologist. I’ve had mine 10 years and he’s amazing. He listens, remembers and is super smart. He will get me in right away if I have an episode. Mine include GI issues, anxiety and lethargy. But most of the time I feel good. I workout a lot and I think that helps and I advocate for my symptoms. My sister had thyroid cancer and my dad had his parathyroid removed so it’s all over our family and. I have a goiter. I get all my panels checked and so far I do best on generic 112 levothyroxine. I’m 44.

[L]

I went hyper then hypo after birth of 3rd child...which then never returned to normal so I now am diagnosed with Hashimotos. I felt like I had run a marathon everyday, I was cold, my hair was falling out, my nails super brittle. I had no motivation to do anything except keep my kids alive. I thought I was depressed so I made an appointment for a physical—they ran routine labs and that is when it was found. That was about 9yrs ago. I felt immediately better on medication. The doses have varied but I have to be medicated to function. I have since had 1 child but I am definitely not fertile anymore (age may play in) as we’ve wanted to have more and it took 4yrs to have DD4 and it’s been 6 since her. Otherwise I’m overweight but I can loose if I do AIP diet which is very restrictive. I fell off the wagon during a very stressful time & regained all the weight I lost. It’s not an easy lifestyle and I’m definitely not the “same” person I used to be...but also I’m old (43) & I’d say after turning 42, I noticed drastic hormonal/body changes...probably all age related.

[atarianna]

Also, random plug but my amazing Endo just moved to Duke University. If anyone is in the area and looking for an endo, I couldn’t recommend her more. She saved my life.