Bunch of symptoms, maybe hypothyroid, what do I do next?
September 30, 2011 1:06 PM   Subscribe

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.

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:
- Fatigue
- 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
- Constipation/bloating
- heartburn
- 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
- headaches/migraines
- 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: throwmeaway2011@gmail.com
posted by anonymous to Health & Fitness (15 answers total) 11 users marked this as a favorite
Get referred to an endocrinologist, by your GP.

/ had Hashimotos and thyroid cancer
posted by everichon at 1:24 PM on September 30, 2011 [4 favorites]

Most of your symptoms are not specific. IANAD. But

* Constipation/bloating
* abnormally low ferritin levels
* like I went from 100lb to gaining 20 lbs in a matter of months.

A gluten intolerance test would not hurt.
posted by yoyo_nyc at 1:37 PM on September 30, 2011

I'm totally in no way a doctor, but I've seen testosterone deficiency mentioned in discussions where hypothyroidism had been indicated but could not be established.
posted by krilli at 1:37 PM on September 30, 2011

Seconding endocrinologist. I have Hashimoto's and my endo likes my TSH under 2.
posted by kestrel251 at 1:47 PM on September 30, 2011 [1 favorite]

I'm here to say I had a bunch of similar symptoms that I thought were thyroid-related -- always cold and tired, hair falling out, abnormal menstrual cycles, panic attacks, deficient in vitamins D and B12.

Prescription D supplements and a gluten-free diet has made me right as rain. Go to an endocrinologist and let them do a whole work-up instead of getting hung up on the thyroid possibility; a lot of ailments are similar.
posted by Andrhia at 1:48 PM on September 30, 2011

My thyroid levels tested okay. A doctor prescribed thyroid supplement anyway, based on my chronic fatigue. He said it's very safe, and if it didn't help in a couple weeks, I should call the office, and stop taking it. It was a huge help. In addition to having more energy, it helped with Constipation, Cold all the time, Brain fog/lack of concentration, Dry skin, Frequent infections/cold/getting sick. I lost 15 pounds just because I had more energy. I got stuff done.

In my experience, there's a Chronic Fatigue - Depression - Chronic Fatigue - Depression loop that doctors don't recognize. Who know if Chronic Fatigue causes Depression or if Depression causes Chronic Fatigue. Address both, and maybe the loop can be broken.
posted by theora55 at 1:48 PM on September 30, 2011 [2 favorites]

How is your nutrition? I had some problems with fatigue, weight gain, daytime sleepiness and brain fog. My diet is on the better side, but my problems cleared when I started supplementing with a multivitamin, Vitamin D, B Complex, and fish oil. The B Complex in particular seemed to help. Some people poo-poo vitamins, and I'm not saying don't pursue a medical opinion, but this is a fairly cheap thing to try while you are waiting for doctor's appointments and test results.
posted by unannihilated at 1:49 PM on September 30, 2011

What Andrhia said. I would say whatever doctor you find, have them be open-minded, nice, and willing to look at what may not be 'obvious' to every other doctor. Have seriously thorough bloodwork, looking at everything, all your hormone levels, etc.
posted by bitterkitten at 2:28 PM on September 30, 2011

(Oh, biiiiig +1 on nutrition. I greatly improved the condition my psoriasis and significantly reduced brain-fog by cutting out gluten, most milk products, and sugar.)
posted by krilli at 2:49 PM on September 30, 2011

If you doctor won't refer you to specialist or agree to treat you for your (probably thyroid condition (and theora55 has it right, btw) then seek another doctor - STAT.

It's ridiculous you've put up with this for so long.

I would also see a acupuncturist ( that also works with herbs) about once per week if my insurance covered it. But that's me because I've had far better success with Eastern Medicine over the years.
posted by jbenben at 3:38 PM on September 30, 2011

Recommended lab work (TSH isn't shit). You might want to get the book as well NAYY. Prepare to find a new doctor, though I go against the grain and against endocrinologists. A naturopath or DO may be your best bet.

I hope you find good health.
posted by vers at 3:39 PM on September 30, 2011 [1 favorite]

This all sounds awful, and I'm sorry to say that I logged in just to encourage you to get tested for celiac. Your question could have been written by me a few years ago, before my diagnosis. Complete with all the deficiencies, coldness, migraines... Ugh. So sorry you're suffering.

(The initial test for celiac is easy--it's just bloodwork.) Best of luck.
posted by purple_bird at 4:13 PM on September 30, 2011

My primary care doc prescribed a relatively low dose of thyroid hormone when my TSH was around 4 but I was having extreme hypothyroid symptoms, saying that the new recommendations are to treat hypothyroid more aggressively. The medication did the trick and further testing revealed that it's Hashimoto's. TSH levels fluctuate. A lot.
posted by camyram at 4:48 PM on September 30, 2011 [1 favorite]

Apparently gluten looks a lot like some parts of your thyroid to your immune system, so if you have celiac, which explains the small, but statistically significant celiac response of having an auto-immune condition against your thyroid.

But, that's not what I was going to say - first, yes, lots of other things can do this.

I suggest you measure your basal temperature, first thing upon waking up in the morning, before even moving much, for a couple of weeks and take it to an endocrinologist. It's a good indicator for hypothyroid, and will give them more to work with in any case.

Good luck!
posted by Elysum at 8:43 PM on September 30, 2011

I had all the symptoms you're describing, and tested at a normal TSH twice. Finally, after a year of misery, my mother pointed out that glandular thyroid supplements are available over the counter, and I should just take some for a week and see how I felt. I took 'em, and all of my symptoms resolved immediately, within days for most. I have to take the pills every day, but as long as I do, I feel great. I recommend an endocrinologist who is progressive about thyroid issues (you can find this out online). Good luck!
posted by Nibbly Fang at 12:33 AM on October 1, 2011

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