Bunch of symptoms, maybe hypothyroid, what do I do next? For the past several years, I’ve had a bunch of nagging symptoms that together have been very frustrating, and at times debilitating. The onset of the symptoms was about 7 years ago. My GP initially thought hypothyroidism, but the tests came back normal. As the years have gone on, the symptoms have waxed and waned but never gone away, and I keep getting retested for hypothyroidism at my doctors suggestion, but the tests always come back normal. After looking at the actual values from the lab, and a bit of research, I’m wondering if it isn’t in fact hypothyroidism, and what to do next.
posted by anonymous to Health & Fitness (15 answers total) 7 users marked this as a favorite
This is going to get long to try and explain everything, but I think its relevant.
After my most recent labs, I requested I get a copy of them. The thing that jumped out at me was that there was a note from the lab saying “TSH levels between 3.0 and 4.94 uU/mL have been associated with subclinical hypothyroidism.” My TSH level was 3.17 uIU/mL. I started digging a little more and found out that in 2002, the American Association of Clinical Endocrinologists change the reference range from .5 - 5 to 0.3 to 3.0. And on top of that, from what I’ve read, TSH tests don’t always work to indicate hypothyroidism.
I’m trying hard not to be an internet hypochondriac, but that combined with my primary doctor constantly looking for hypothyroidism based on my symptoms, and two other doctors suggesting maybe I have hypothyroidism, is really making me wonder. Let me explain.
A little background. For the past several years, I’ve had a bunch of on there own, minor symptoms, but together have been very frustrating, and at times debilitating. The onset of the symptoms was about 7 years ago. I was just tired all the time. I’d take naps when I got home from work and I could barely keep my eyes open. I think I’ve struggled with sleeping troubles all my life, but this was the worse than it had ever been. Around this same time I gained a lot of weight, like I went from 100lb (I’m very small, so the weight was actually about right) to gaining 20 lbs in a matter of months.
I went to my GP, and she tested for hypothyroidism, but also thought it might be due severe anxiety/stress/depression. I was in a bad place emotionally so this made sense. I was at a terrible job and I felt trapped financially. When the thyroid test came back normal, she put me on lexapro. I was on it for about 6 months, slept more and gained more weight (but didn’t really care). I eventually had enough and quit and got off the lexapro. But the weight gain and tiredness got worse, and after nearly falling asleep driving TO work (new job), I went back. This time she sent me off for a sleep study - to which I was tested for hypothyroidism again and the sleep doctors request, and discovered I had mild sleep apnea and a dramatic case of Restless Leg Syndrome. That turned out to be caused by (or at least aggravated by) abnormally low ferritin levels. A few months of iron pills and resuming eating meat (I was a vegetarian before that) I was feeling better and starting to lose the weight I had put on.
Fast forward a year, and I start to feel down again, and my thyroid was tested again and again was “normal”. The last few years the cycle has continued, sometimes I’m “ok” sometimes I’m barely able to function. I can USUALLY drag myself to work but even now it interferes. It’s been worse the past several months. My doctor tests for hypothyroidism pretty much yearly because the symptoms sound like it. She’s tried looking at a bunch of things and the latest thing we were going to try was talking to another sleep doctor (I also suffer from periodic insomnia, but I’ve also just recently learned that is also a symptom of hypothyroidism).
My new OB/GYN also suggested it might be hypothyroidism, but I told her I'd already been testing for that.
My symptoms are as follows:
- Daytime sleepiness
- Insomnia (the fatigue and insomnia don’t always go hand in hand - I might sleep fine for a few weeks but still feel just tired).
- Difficulty waking in the morning
- Cold all the time -to the point where my coworkers poke fun how bundled up I am when I work- this one I’ve not mentioned to my doctor because honestly, I thoughts that’s just the way I am until I read it was a potential symptom of hypothyroidism
- High blood pressure
- High cholesterol
- low sex drive
- occasional palpitations
- Aches, particularly it feels like my bones are just “tired” even after a good night sleep.
- Brain fog/lack of concentration
- dry hair
- patches of dry skin
- frequently infections/cold/getting sick
- periodic bouts of RLS returning or other twitching and muscle spasms
-general blah feeling
I also tested my temperature this morning when I first woke up. Here is what the numbers came out to: mouth 97.5, armpit 97.2, ear 97.5 (ear thermometer for the latter, not sure how accurate).
When I say fatigue and daytime sleepiness they’re two different things. Sleepiness is just that, I’m just sleepy and really want to go to bed. Fatigue is much worse, its like my whole body doesn’t want to function anymore, and is more pronounced with physical activity, even minor like shopping I will try to force myself through it to finish important things and literally have to try and talk myself through, like “you can do it, just a little bit more and you’ll be done, just wash a few more dishes/clean a few more shelves/fold a few more towels”. Its not always that bad, it varies quite a bit and seems to go in spurts.
My labs also discovered low potassium and a vitamin d deficiency, both go hand in hand with an underfunctioning thyroid. And I could maybe see vitamin D, because of my exhaustion I don’t go outside enough, but after my doctor gave me the list of potassium rich foods to eat, I realized I was already eating them on a frequent basis. D is now up to low but acceptable range, and I’m eating more of the potassium rich foods at my doctors request to see if I can raise it.
Is there anything else I should be concerned with? I’ve also heard adrenal problems can be similar and the whole thyroid/adrenal system is closely tied together.
Two things I should mention - this isn’t depression, I am actually fairly content, and frequently fairly excited about things in my life. I’ve got a good job, a good marriage with a husband who I love deeply and is supportive of all my ailments; I like my career, I have an engaging hobby I love. I explained it to my doctor like this - I have the will, I just don’t have the energy. Weekends I get up late but am usually go for a few hours and then get tired again and need to sleep or at least site around. Sometimes I can go most of the day, sometimes a short shopping trip wipes me out.
And the other, I have allergies. I’ve had them my whole life, and am currently getting shots, which seem to help mostly. However, I’ve recently been diagnosed with asthma (hooray). However the flare-up was a month ago due to a specific trigger that was never previously a problem so I don’t think its related.
I’m not looking to get diagnosed over the internet, but I’m wondering where I should go next to either confirm this or rule it out once and for all. Should I go back to my GP, and ask she do more tests? Should I seek out an endocrinologist? An internist? I love my GP, she tries to be as responsive as she can be and is trying to treat the symptoms, but I am wondering if this is just outside her area of expertise. I’ve heard both good and bad for going to an endocrinologist. I just don’t know what the next step is.
Sorry its Anon, I'm too tied to work and professional life here. If necessary, email me at: firstname.lastname@example.org