All the best parts of hypothyroid & all the best parts of hyperthyroid

January 27, 2016 9:56 PM

For the last 18 months, I have been on a thyroid rollercoaster. Finally, about 11 months ago, my doctor prescribed levothyroxine after my TSH hit 5.8. For the first few months, I didn't notice a difference, but soon I got locked into a cycle of hypo/hyperthyroid. These cycles last for a few days to a month. Now, after months of cycling back and forth, and a TSH bouncing from .53 to 2.8 in a two week span, I am barely sleeping and having terrible hot flashes. Help me make this stop, or at least help me live with it. Please. Teaching 12 year olds is challenging with no sleep.

This is not stress contingent. I've tracked the stressful times and they don't line up with TSH or energy levels. Right now, I have good sleep hygiene, and I aim to fall asleep before 10 pm and get up around 6:30 am. I've tried sleeping with the window open (too cold), thinner blankets (too cold), more blankets (too hot), without clothes (too cold), with clothes (too hot), etc.

For the last two years, some things have been consistent: I just kept putting on more weight, I was tired, my hair and skin were suddenly super dry, I can't keep skin on my lips because of dryness...all hypo symptoms. The cycling started with the school year (I teach 6th grade). I started feeling irritable, had a racing heart and high blood pressure, couldn't sleep, had hot flashes, and started losing a bit of weight. I FINALLY had energy, but I felt jacked up on caffeine when I hadn't had any.

Plus, these problems are made more frustrating by the fact that when I'm not hyper, I sleep pretty well. I do have chronic pain and some kidney issues, so I sometimes do wake up in pain or to pee. But for the most part, I'm normally able to sleep 7-8 hours. Then on the weekend, I often sleep 12-14 hours per night, and sometimes add some naps during the day.

This is making me miserable and I really really fucking need to fucking sleep.

My doctor is nice, but not super knowledgable about thyroid stuff. It runs in my family (every woman started thyroid meds in their 30's) and I had all the symptoms, but it took several months of 5+ TSH for her to finally agree to medication. They also ran cortisol and did a dexamethadone suppression test, and while my ACTH was pretty high (almost triple the "normal" range), the suppression test came back normal.

In case it matters, I take verapamil for migraine management, as well as Sumitriptiphan for really bad ones. I also have seasonal and dust allergies. I probably am Celiac, but went gluten free long before doctors thought to check. My official diagnoses are: seronegative rheumatoid arthritis, thyroid disfunction, idiopathic chronic back pain, asthma, heart murmur, chronic migraines, and serious vitamin deficiencies unchanged by diet or supplements (D, B, iron).

Oh, and for some extra fun, my vision improved three months after starting levothyroxine. My optometrist told me he had never seen that happen to someone my age (oh yeah - female, early 30's). Like, it's completely unheard of. This is probably not relevant, but I mention it for the sake of completeness.

So what should I do? I need ideas for how to manage these hyper periods so that I can sleep. I could also use suggestions for what to ask my doctor to test. Hell, I'd even take some commiseration if any of this has happened to you.

posted by guster4lovers to Health & Fitness (15 answers total)

Have you had a thyroid ultrasound?

I have some of these issues (not as severe as yours sound) -- sleeplessness, joint pain, hot flashes -- when I eat soy. I've been on an autoimmune protocol for about a year, and boy can I feel it when I screw up (sugar also causes these symptoms, to an extent, but not as dramatically as soy). You might try eliminating it (it's tough, it's in everything) and see if it helps.
posted by WesterbergHigh at 10:11 PM on January 27, 2016 [1 favorite]

Is your doctor an endocrinologist? If not, you need a referral to one. The flipping between hypo and hyper can be Hashimoto's, thyroiditis, autoimmune... If you were hypo only and easily controlled by meds, then a general practitioner can handle it. Once you cross into complicated symptoms, an endo is the way to go. I'm being treated for hyperthyroidism, so I feel your pain (and jitteriness, sleeplessness and sweating!).
posted by cecic at 10:15 PM on January 27, 2016 [6 favorites]

Response by poster: Haven't had an ultrasound. I don't eat much soy, but that's probably worth trying.

My doctor is not an endocrinologist. There are very few in my area so it's been hard to get in to see one. I haven't pushed that hard because I had a very negative experience with the last endo I saw (many, many years ago). However, my doctor has been consulting with an endo about the adrenal tests they ran.
posted by guster4lovers at 10:23 PM on January 27, 2016 [1 favorite]

I wonder if you might do better on a "natural" thyroid med. I take Nature-Throid and my doc (highly regarded here in SF) said he's found it to be the most effective with least side effects of all of the thyroid meds. Maybe ask your doc if you can try it? I've done really well on it, increased energy although nothing crazy/manic - I just feel normal again.
posted by hapax_legomenon at 10:24 PM on January 27, 2016 [2 favorites]

You really must get in to an endo, even if it is hard. Also, hal_c_on is right on- brand name only. Even though the active ingredient is the same in the generic, the carrier isn't and sometimes it can affect the way your body uses the medication. You easily could have gotten several different brands of generic and processed them all differently. Or it could be something more serious necessitating an endocrinologist.
posted by PorcineWithMe at 3:15 AM on January 28, 2016 [2 favorites]

You need need need to see an endocrinologist, as soon as possible. This is not normal for thyroids, and it's also not normal for not-normal thyroids.

For reference, my endo tracks my thyroid levels on six-week intervals at the absolute minimum. If your thyroid levels are swinging this quickly, there is something else going on (possibly autoimmune, like Hashimoto's or Grave's).

An endo should run the autoimmune thyroid bloodwork (as well as all the usual bloodwork), and also refer you to have some scans to see if you have a hot nodule (thyroid nodule producing thyroid hormone). Depending on what they find, they may recommend taking out the thyroid or killing it with radioactive iodine and maintaining your thyroid levels with meds only. I'm not saying that's a pleasant process, BUT they would then be able to titrate you to a stable level. I suspect your life would be a whole lot more pleasant.

Take this anecdata for what it's worth, but I have had thyroiditis and it's a much longer swing (three month minimum) -- what you're describing sounds like something else.

When I was hyper due to thyroiditis, beta blockers helped a lot with symptom management for some of the nastier stuff like the anxiety and heart palpitations. If you're swinging on intervals this short, I suspect beta blockers would not be a good option for you, but you could ask.

Again: See an endocrinologist. And good luck -- I have been there (albeit on a longer time scale) and I know this is immensely frustrating.
posted by pie ninja at 4:26 AM on January 28, 2016 [2 favorites]

Do you have normal iodine intake? I had wacky thyroid issues when I used non-iodized salt. Do you take allergy or asthma medications (because some of them can lead to sleep issues)?
posted by metasarah at 5:35 AM on January 28, 2016

A friend I know who was locked in this cycle in an area where it there were few endocrinologists (rural Canada, had to drive 2+ hours to the big city to see one) eventually made it in and had a really serious talk with the endo about access to care and quality of life, and decided that she would have her thyroid removed and go on synthroid permanently. It was a pretty fraught decision, but ultimately a good one for her. She's back to having a normal life, albeit on a pill every day for the rest of it.
posted by juniperesque at 5:48 AM on January 28, 2016

I've got Hashimoto's and like others have said, it was initially diagnosed as a possibility by my GP but he had me do an ultrasound and referred me to an endocrinologist who confirmed the diagnosis (this is in Canada so no cost to me other than what bit of my taxes contributed to our health care system). I tried both Synthroid and the generic version and like others, I was surprised that the generic didn't work for me just like the name brand (for other medications, such as finastride, generic has been fine).

My GP conducts regular blood tests and once we determined the ineffectiveness of the generic, we've adjusted the dose slowly upwards and after a year or so I've stablized on a dose of 112mcg.

My sleeping issues turned out to be apnea. But I've never swung from hypo to hyper and rapid swings like that would probably need more expertise to diagnose, hence why people are saying you need to see an endo, hopefully a good one this time.
posted by juiceCake at 7:30 AM on January 28, 2016

Response by poster: I just googled images and I've definitely only been taking generic. All the bottles and pills have looked exactly the same, so I think it's a consistent generic at least.
posted by guster4lovers at 8:09 AM on January 28, 2016

Go to an endocrinologist for sure, and have your female hormones checked as well. They could be off kilter, either because of the thyroid or they may be contributing to thyroid problems. One of my mom's close friends had a hysterectomy and wound up with greatly improved vision (so much so that she had to change to a much weaker prescription). It's an oddity for sure, but it's happened before. I would have an endocrinologist do a complete work up.
posted by MultiFaceted at 10:25 AM on January 28, 2016

I just renewed my prescription a few days ago and at Costco Pharmacy now (and most likely other pharmacies, at least in Canada) they are required to show me the pills and confirm the colour so that I acknowledge I'm getting Synthroid and not the generic. I may well be jumping to conclusions since this is a new thing here but it perhaps speaks to the issues people are having between name brand and generic.
posted by juiceCake at 11:47 AM on January 28, 2016

I didn't have a lot of endos in my area either, and the one I did see was a pompous ass, so I avoided it for a long time to, but... you do need to see an endo. Primary care doctors aren't equipped to deal with an unstable thyroid. I have since moved and found endos who really know what they are doing, they read the latest research, they understand how to interpret various thyroid numbers that mean different things, etc. After years and years of being hyperthyroid and taking medicine for it, I'm actually in remission and not taking anything, which is amazing to me. Even if you have to schedule far out, or maybe a neighboring city/town has some options if you drive a little further, you just need an expert for this.
posted by AppleTurnover at 4:52 PM on January 28, 2016

Please do yourself a huge favor and read Stop the Thyroid Madness as soon as possible. The book has too many dramatic/emotional patient stories to suit me, but it was recommended to me by a health coach as a source of accurate, helpful information on thyroid disease and related conditions. And indeed, my history is similar to many of the stories...diagnosed with thyroid disease 23 years ago, and mis-treated and non-treated by doctors for twenty years. They didn't recognize how many of my symptoms were due to thyroid disease, didn't know how to properly test and treat it, and wouldn't prescribe anything but Synthroid (which makes my heart palpitate terribly and doesn't resolve my symptoms). Finally I found a doctor who prescribed Armour Thyroid (a natural desiccated thyroid hormone), which I tolerated better, but I took it for two years without it bringing my thyroid hormones to normal or relieving my symptoms.

In August 2014, someone told me about a doctor (a D.O) who knows a lot about thyroid disease, so I started seeing him. He prescribed Nature-Throid for me (which works best for many people), had me start taking my temperature four times a day with an accurate basal thermometer, and had me start taking some supplements for nutritional deficiencies. He had me increase my dose of Nature-Throid in small increments every two weeks until my average daily temp was normal. He also sent me to a health coach he works with who explained to me how to take and record my temperature and keep track of my symptoms so I could report back to the doctor. She also talked to me about other conditions and nutritional deficiencies that are sometimes associated with thyroid disease - she's a wealth of information about all of this. She recommended books for me to read and one of them was STTM - she's the one who said it's the best information. I've learned so much from it, and it's shocking that all of the doctors I told about my symptoms over the years didn't recognize them as symptoms of thyroid disease.

It took me several months to reach the right dose of Nature-Throid for me, and the doctor could hardly believe how much I need (a lot). But I do have some stomach/absorption issues, which isn't uncommon in people with thyroid disease. Anyway, my thyroid levels are now normal and my symptoms gone. If only I had found this doctor 23 years ago, I wouldn't have had to suffer all the symptoms I had for years.

I gave a copy of this book to an acquaintance who I knew had been suffering from up-and-down thyroid symptoms like you describe (the last time I had been in contact with her). She told me that the hyper symptoms got so bad, her doctor was afraid she was going to have a heart attack and he killed her thyroid with radiation - a standard medical practice. (STTM talks about that pattern, by the way.) She's very sensitive to thyroid hormones and has not been able to get them balanced, and has great difficulties because of it. It talks about this in STTM, but it's too late for her. But she recognized her 20-something daughter's symptoms in the book....she has had health problems since her late teens, and they've taken her to a number of doctors, including an endocrinologist. All of them said the daughter doesn't have thyroid disease, even with all of her symptoms and the family history. So she took her daughter to my doctor, who started her on Nature-Throid that day, and she's doing well on it. That was about eight months ago, and her daughter continues to recover and do better than she has in years.
posted by onemorething at 8:04 PM on January 28, 2016 [3 favorites]

Response by poster: Doctor responded to my request for a referral with "Your TSH is still in normal range. This is probably because of [totally unrelated other condition]. I ordered you a new TSH test, so take that one in the morning."

Kaiser is frustrating in lots of ways.
posted by guster4lovers at 7:52 PM on January 29, 2016