So, no Synthroid for me. Now what?
March 23, 2012 7:54 AM   Subscribe

First test: thyroid fairly normal, TSH elevated. Second test comes back with no antibody activity and normal thyroid function. No treatment planned, but I'm still feeling like a ton of bricks has hit me. What now?

I went to my doctor with what turned out to be a laundry list of hypothyroid symptoms- bone-crushing tiredness, forgetfulness, brain fog, pains in my bones and joints for no bloody reason, weakness and dizziness, not feeling rested no matter how much I sleep, being unable to lose weight at my previous normal pace, among others.

However, the second test (antibody) came back with no sign of any antibody activity, so there is no treatment planned.

In the meantime I am continuing to feel wretched. Tired down to my bones, feeling the strong urge to nod off at work (sometimes I start to), aches all over for no reason.. some days and nights I can barely leave the couch, I am so tired. Something is wrong. I have only just accepted this (rather than being angry at myself for being lazy) and I had pinned my hopes on getting treated. I have a big event in the summer, full time work that demands a lot of me and I obviously want to have a life, too. I am at the end of my rope and I am burdening my SO with this. I am completely desperate.

Were you in my situation? What do I need to do now? What *can* I do now? For the purposes of this question, I am based in Europe.

Note: I don't have the actual figures as my doctor just phoned me to tell me; I will only be able to get the figures when I go to their office.

(I do not have a throwaway email but would happily ping you from my account if you mention that you're amenable to same in your comment.)
posted by anonymous to Health & Fitness (16 answers total) 9 users marked this as a favorite
I am not a doctor, but don't antibody tests just confirm Graves or Hashimoto's disease? Someone can still have low thyroid functioning (which is compensated for with an elevated TSH), and not Graves or Hashimotos (so no antibody activity).

It would help to have the actual numbers - some doctors have a much higher TSH threshold than others.
posted by muddgirl at 8:00 AM on March 23, 2012

No antibody activity does not mean a thing! There are at least seven different antibodies against the thyroid that can be involved, my endocrinologist told me, but there are tests for only three (?) of them. I was negative on all when my eyes were bugging out obviously from my thyroid eye disease, which is caused by the same antibodies that attacked my thyroid and gave me hypothyroidism.

If your current doctor is not an endocrinologist, then make an appointment to see one. If your current doctor is an endocrinologist, make an appointment to see a different one (every six months if that's all your insurance will cover), until you find one who will diagnose and treat your problems. Memail me if you like.
posted by artistic verisimilitude at 8:03 AM on March 23, 2012 [1 favorite]

There was a similar question a week or so ago - here. And I'll give you basically the same answer I did in that post:

When you meet with your doctor, ask "what next?" Keep asking that question until you get this figured out. Just because a few tests come back "normal" and there is no treatment plan or plan of action doesn't mean that's the end of it. Keep asking "what next?"

When describing your symptoms use words like "debilitating," "interferes with daily function," "chronic," and "unable to function."
posted by Sassyfras at 8:05 AM on March 23, 2012 [4 favorites]

I felt EXACTLY like you do except I had heart palpitations too. I was sure I was anemic because that's what it sounds like. So sure I had tests done at two different places.

Turns out I was very Vitamin D deficient! Not uncommon in Northern Europe.

You wouldn't happen to be based in Northern Europe, would you?

Ask for more tests.
posted by Ms. Moonlight at 8:18 AM on March 23, 2012

Endocrinologist. You need a good one. Don't get freaked out, just keep going after answers.
posted by PorcineWithMe at 8:24 AM on March 23, 2012 [3 favorites]

Have you had a thyroid panel done? I had this issue a couple of years ago where my levels came back slightly low and my doctor just faxed in a prescription and I was notified by the blood tech - I didn't even know they tested my thyroid. I didn't like how casual my doctor was about putting me on meds for the rest of my life without even talking to me about it so I didn't fill the prescription.

Fast-forward to the next year and I had my thyroid tested again and it came back normal. A different nurse ordered this test because I requested it, but she told me that before they would put me on meds or anything, if my thyroid test came back abnormal they would do a "thyroid panel" to figure out exactly what I need.

I'm in the US and don't have insurance right now but I plan to get retested and maybe see an endocrinologist when I do because I don't even really know what the above stuff I mentioned means. I have no idea if I have a problem or not!

So, I would see a specialist and ask lots of questions.
posted by fromageball at 8:26 AM on March 23, 2012

I've had similar experiences with the medical system and can appreciate your frustration. However, I wouldn't assume that medication will resolve your issues by summer or that it is even thyroid related. However, there seems to be a reason why you are suspecting thyroid disease (ie: family history?).
Is alternative therapy an option?. I did Myers Cocktail for 12 weeks, in order to get through a very demanding time. Didn’t solve my thyroid problem, but I had a few months of where I have never felt better in my whole life!.
posted by what's her name at 8:34 AM on March 23, 2012

2nding the suggestion to make sure your Vitamin D levels are good. Your symptoms are consistent with a Vitamin D deficiency.
posted by COD at 9:02 AM on March 23, 2012

Yep, you need a full workup as the next step. Don't let your doctor brush you off just because your TSH was at a normal level the second time around. The range for "normal" values for TSH is pretty broad, and if it is truly a thyroid issue, you can be put on a low dose of Synthroid simply because what's normal for someone else may be too high for you, and you need the extra boost.

There are lots of other things that could be going on and cause those types of symptoms, too. If your doctor isn't willing to explore things further, see someone else if you can.
posted by scarykarrey at 9:13 AM on March 23, 2012

Ignore the cheesy name and check out this thyroid site. Very, very interesting information on how standard thyroid checks miss quite a few problems. They also feel that Synthroid is not the best treatment, but YMMV.
posted by heigh-hothederryo at 9:21 AM on March 23, 2012 [1 favorite]

OH Hai. Welcome to the last several months of my life. First, some back story. I'm female, and since you don't specify your gender, I'll give you my whole story. Sorry if some of it is irrelevant to you.

Hashimoto's thyroiditis runs in my family, such that my younger sister is already diagnosed.

My list of symptoms includes low blood pressure, bradycardia (90/60; in the 55 bpm, despite that I am not really an athlete, I walk 2 miles a day, max), joint pain, tired tired tired, forgetful, dry skin, losing my eyebrows, gaining weight with no explanation other than "congrats, you turned 30!" itchy scalp, menstrual changes, and bowel changes. Migraines. Oh god, the migraines. Peeling fingernails. There's more. I'll spare you.

Thyroid results all came back within normal range, but of course, I have no baseline for that. My cholesterol is up, which is also an indication of thyroid trouble. The doctor checked my deep tendon reflexes and found nothing. By nothing, I mean, no reflex. Tap my knees and elbows and they just don't respond. I found that particularly disturbing.

What next? In my case, more blood work. A complete metabolic panel, a complete blood count with diff, some other stuff. That was followed by a whole ton of anemia studies. I have normocytic anemia. That's an indication of thyroid problems. But also of a bunch of other things. Potentially worse things.

We seem to have ruled out leukemia and some other scary things. So with all of that done and no real answer, we continue to rule things out while we wait to retest my thyroid in a few more months. Yesterday I had a transvaginal ultrasound (yes, that procedure they're arguing about here in the states for ladies who want abortions. I would testify that it is invasive, uncomfortable, and yes, it does cost money). The tech wouldn't show me the screen or tell me what was up there. I get the reasons for that, and want to let you know not to be freaked out if you have to get one. My limited understanding of this is that some things going on in the uterus and/or ovaries can disrupt hormones, or can be caused by disrupted hormones. So in addition to masses, they're looking for thickened uterine walls, overactive ovaries, and...maybe other things.

If my u/s comes back inconclusive or negative or filled with unicorns instead of masses, we'll move onto lower endoscopy (I haven't investigated what this would entail. I'm still hoping it's "just" my thyroid)

The doctors won't treat this as slam dunk Hashimoto's because that could be dangerous, leaving something worse untreated. In the meantime, I continue to suffer and have been finding myself irrationally angry about incredibly trivial things. It's very possible that the anemia is caused by hypothyroidism, but is't also possible that it and everything else are clues to something else.

So my advice is to keep asking "what next?" In my case, this means that as every round of results come in, I ask if there is something else I can go do before I come get seen again, to minimize the cost of my doctor interactions. I'm in the US and uninsured and underemployed. Since you're in Europe, it might be beneficial for you to see an endocrinologist, if your health care access is as good as I hope it is. They can check things like adrenal function, and know how to interpret the changes in your thryoid and other blood tests.
posted by tulip-socks at 9:25 AM on March 23, 2012

The point of my whole long saga is.... if you have noticed any changes report them, whether they seem relevant or not. Be honest when your doctors ask you questions about your history. And continue to advocate for yourself. Asking what else they might be looking for, if they have any other suggestions, etc.
posted by tulip-socks at 9:37 AM on March 23, 2012

I had overwhelming low thyroid symptoms (similar to what you're describing) and my thyroid panel came back "normal", at least according to the very unsympathetic doctor that I saw. I couldn't begin to afford an endocrinologist, but if you're in Europe (with socialized medicine!) I would recommend one. There's a lot of variation in what doctors consider normal thyroid.
In my case, I was freaking out that I couldn't get diagnosed, and my mother suggested I try over-the-counter glandular thyroid pills. She said if my thyroid was normal, I'd get really jittery in that too-much-coffee way, but if my thyroid was low, they'd make me feel better. And they made me feel A MILLION TIMES better. It was like magic. So now I take a glandular thyroid pill every day, and most of my symptoms are gone. I still really want a diagnosis and proper meds, but I can't afford it, so over-the-counter is what I'm doing for now. I am not a doctor, and YMMV, but you might want to check it out. In the US many health-food stores carry them, and I mail-order mine from here:
posted by Nibbly Fang at 11:41 AM on March 23, 2012

Thirding (?) the Vitamin D deficiency. I had the same problems and I was severely deficient.

And generally speaking, I recommend always pushing to be your own advocate within healthcare systems. And yes, I understand that it can be difficult, especially when you feel as you do right now. I wish you the best!
posted by Kitty Cornered at 11:54 AM on March 23, 2012

It is not clear from your post if you went to your regular doctor or an endocrinologist. If you were just going to an Internist/GP, get yourself to an endocrinologist! If you need a rec in San Francisco, MeMail me.
posted by radioamy at 11:59 AM on March 23, 2012

Adding in - get tested for Celiac - it can also cause the symptoms you list. Standards of what constitute low thyroid hormone levels have changed as well - lots of good resources on that front above.
posted by leslies at 7:11 AM on March 24, 2012

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