thywhat?

September 17, 2012 9:39 PM

Ok, so my gf has some sort of thyroid condition? Shes on a lot of natural hormone (like 18 mg a day? 3 pills, I think) and her TSH is low. She says, and I believe her, that the high thyroid is what keeps her functioning, awake, etc. However, doctors seem to find the low TSH alarming and want to lower the thyroid dose. She will have none of this, and gets upset. I have no idea whats going on. help? please?

What possible conditions does she have? She did have severe bloodloss at one point.

What should we be asking doctors?

What should I know about tsh/thyroid/etc? She seems to think theres a conspiracy where the synthroid makers deliberately keep people sick... oy. Dunno. It does seem like doctors dont really know much about this, or perhaps she learned too much from the internet. Either way, I'm feeling confused and trapped here. I know nothing about any of it.

posted by Jacen to health & fitness (24 answers total)

Your girlfriend is on synthroid now, and doctors want to lower it, and she's upset? It's kind of hard for me to tell from your question if that's the case.

One of the side effects of overactive thyroid (or too high doses of synthroid) can be weight loss, and lowering the dose could result in weight gain. Could this be one of her concerns?
posted by xingcat at 9:52 PM on September 17, 2012 [3 favorites]

From Ms. zrail:

When I was hyperthyroid, prior to being diagnosed with Grave's, I ate all the time but kept losing weight, I had diarrhea, shaking, abnormally high heart rate, and couldn't sleep. Also, severe mood swings. It would be alarmingly easy to fly off the handle.

She needs to lower the dose and have her numbers tested again. Hyperthyroidism is bad news.
posted by zrail at 9:55 PM on September 17, 2012 [1 favorite]

It sounds to me like she's been taking a higher dose than was prescribed because she likes the effects of it. So much so that she has suppressed her Thyroid Stimulating Hormone (TSH) levels; that is, her pituitary gland is not telling her thyroid to make thyroid hormones in the way it should because of the excess already in her body.

If I'm interpreting the situation correctly, she should be aware that too-high thyroid hormone levels are dangerous; in addition to weight loss, she could also get high blood pressure, anxiety, elevated heart rate, and osteoporosis (because the hormone speeds the breakdown of bone).

She needs to see an endocrinologist (hormone expert), tell him or her what she's doing, then get on the correct dose of thyroid hormone. It sounds like you need to go with her to the appointments if you want to understand what's happening.

There is no conspiracy; if you are hypothyroid, you need to take the hormone for life. However, it's a relatively inexpensive medication with no side effects if taken as prescribed.
posted by WorkingMyWayHome at 10:01 PM on September 17, 2012 [7 favorites]

She seems to think theres a conspiracy where the synthroid makers deliberately keep people sick... oy.

This is utter nonsense. It also doesn't make any sense in this case, since she wants to take more and not less of the thyroid replacement meds?

It does seem like doctors dont really know much about this

This, I think, is accurate to some extent, at least from my perspective as a patient with an autoimmune issue that affects my own thyroid function. According to a couple of doctors I have talked with, the endocrinology community is in the midst of some major paradigm shifts about how to define reference ranges for optimal thyroid function, how useful generalizations about reference ranges are when dealing with individual patients, and what the balance of patient observation and self report to test results needs to be in diagnosis, treatment, and medication adjustment.

So. If she has had unfruitful conversations with the doctors she's seen to date, she needs to get second and third opinions. And she needs to be truthful with her doctors---if she wants to take a higher dose of thyroid replacement because she wants to be really active, or only sleep 6 hours a night, or because she's terrified of gaining weight, she needs to tell them that. And she needs to listen if the consensus opinion she gets is that those are dangerous choices and she needs to find ways other than medication to achieve those goals.

What you can do best is to support her in managing her care. If she asks you to accompany her to appointments, take notes (that is one of the best things my husband does for me) and be there as a resource to offer your perspective when she asks you for it.
posted by Sidhedevil at 10:01 PM on September 17, 2012 [3 favorites]

IANYD. Just throwing this out there - some people, women in particular, have been known to like to take doses of thyroid hormone that are too high, because of the weight loss aspect. I am not saying this is what's going on with your girlfriend for sure, but since her doctors are recommending she change her med dose because of the abnormal test result, and she is resisting, I'm just throwing it out there.

If she has some other legitimate reason for thinking she needs a higher dose of thyroid hormone, despite the low TSH, then she should get a second opinion from an endocrinologist.

What you need to know about TSH is that it is like the opposite of thyroid hormone. There is an inverse relationship between the two.

TSH too low, thyroid hormone too high. TSH too high, thyroid hormone too low.

That is breaking it down to the basics.
posted by treehorn+bunny at 10:02 PM on September 17, 2012 [1 favorite]

xingcat, I reread the question several times and yes I think your analysis is correct. Although Synthroid dosages range from 25-300 mcg (not mg) so I'm not sure what the GF's actual dosage is.

I can empathize with a patient who disagrees with a doctor's advice (hey, they're not perfect, and they don't usually have the disease that they're treating). That being said, if the GF is taking so much Synthroid that she is going from hypo to hyper, that needs to be fixed. And from what I understand (IANAD, but I have hypo and I take 100mcg Synthroid, and also my father is an Endocrinologist), diagnosing and treating hypothyroidism is generally straightforward - TSH/T3/T4 levels are off, doctor rx's Synthroid, levels are checked again, dosage is adjusted if necessary, then symptoms subside and patient gets checked annually just in case.

OP, the thing that concerns me about your GF is her concern about the drug company "conspiracy." How would Synthroid deliberately make her sick? And if that's her concern, why does she want to keep taking a dosage that's too high?
posted by radioamy at 10:02 PM on September 17, 2012 [1 favorite]

She did have severe bloodloss at one point.

Do you mean from her menstrual period? Or from a cut or other injury? That is definitely something all of her doctors, including her endocrinologist, need to know about in detail.
posted by Sidhedevil at 10:03 PM on September 17, 2012

As for practical advice, if she will let you, I think you should go to her appointments with her in an advocate role. You can take notes, ask the doctor to clarify, make sure the doctor has as complete a medical history as possible, etc. She should be seeing an endocrinologist, not just a general practitioner or internist.

In terms of learning more about thyroid problems, you can probably find some useful general information on reputable web sites such as the Mayo Clinic or the NIH.
posted by radioamy at 10:08 PM on September 17, 2012 [3 favorites]

If it's at all possible for her to see an endocrinologist who's affiliated with a local medical school and/or research institution, that is one way to increase the odds of getting someone who is likely to be up to date on all the latest research findings.

My experience is also that people on chronic illness support forums will be very frank in talking about the pluses and minuses of specific physicians and their treatment approaches. I'm not familiar with what support forums are out there for people dealing with hypothyroid issues, but they might be a resource. On the other hand, there are lots of people on said forums who might fuel the flames of your GF's conspiracy theories, so. Maybe that is one way you can help, by researching which local specialists people on the support forums recommend?
posted by Sidhedevil at 10:08 PM on September 17, 2012

I'm guessing here, but from the OP's mention of "natural thyroid hormone", I think she may be taking Armour or some other variant of naturally-derived thyroid hormone, rather than Synthroid. Regardless of whether it's natural or synthetic, if it's taking her from hypo to hyperthyroid, it's dangerous for the reasons cited above. If she doesn't trust this doctor, she should find another one who will work with her to address her concerns and adjust her treatment to an optimal level. I know how frustrating it can be- it took me many tries to find a non-sucky doctor for my thyroid issues- but the wrong dose can have a detrimental effect on her health, so it's worth it.
posted by bedhead at 10:11 PM on September 17, 2012 [1 favorite]

The GF's conspiracy theory still doesn't make any sense, at least as described here, even if she's taking Armour or Naturthroid or whatever instead of a levothyroxine (Synthroid). If the concern about high TSH levels was some kind of conspiracy by Abbott (who developed Synthroid) and/or the folks who make generic levothyroxine, it would lead to doctors prescribing less of the thyroid replacement meds, not more. Since the GF wants to take more than the doctors think is wise, not less, I don't quite see how the evil levothyroxine conspiracy is what's causing the friction.
posted by Sidhedevil at 10:22 PM on September 17, 2012

She seems to think theres a conspiracy where the synthroid makers deliberately keep people sick... oy.

She may have gotten this (totally incorrect) idea from the fact that there was a class-action lawsuit against Knoll Pharmaceuticals (the makers of Synthroid) that was settled in 2000:

The lawsuit resulted from an investigation, which began in 1996, that alleged that Knoll Pharmaceuticals and parent company BASF were violating consumer protection laws by attempting to prevent publication of the results of a research study showing that generic and competitive brand name levothyroxine drugs were equivalent to the Synthroid brand.

In other words, back in the 1990s, the makers of Synthroid essentially did conspire to keep people from buying more affordable generic equivalents of the drug. It was not about "keeping people sick." It was about keeping people who need synthetic thyroid hormone from spending their money on products made by someone other than Knoll.
posted by scody at 11:10 PM on September 17, 2012 [1 favorite]

Whoops, sorry, forgot to include the link.
posted by scody at 11:11 PM on September 17, 2012

Ah yes, the ol' "my TSH is low" story. I could have written it myself.

There are any number of thyroid-related diseases associated with a low TSH, and they are treated quite differently from one another. I would recommend that your girlfriend have her T3 and T4 tested, at the very least. TSH is measuring the hormone that signals the thyroid (issued from the pituitary), while the T3 and T4 are measuring the thyroid itself. A full round of tests would help identify what's going on (hopefully).

If she has a low TSH but normal T3 and T4, she might be diagnosed as "sub-clinical." As radioamy points out, there is controversy in the endocrinology community, and treatment of a sub-clinical diagnosis is among the debates.

Best of luck to you both. Thyroid issues are no fun at all.
posted by frizz at 11:14 PM on September 17, 2012 [1 favorite]

Whoa, Whoa, Whoa.

In fact, there have been changes to thyroid meds that have patients upset. Geez.

Extract:

"Then one day about 2000, the FDA started rattling sabers in the direction of this medicine. It was revealed that Armour had never been officially “approved” by this regulatory agency, whose members are mostly drug company executives who take a sabbatical from their high paying jobs to sit on the FDA, returning to their drug companies when their term is over. Talk about the fox watching the henhouse!

As it happens, the chief competitor, Synthroid was also never approved! (This news came out a few years later.) Both of these medications were around long before the FDA set the standard for approval so high that no one but a giant pharmaceutical company can afford to jump through all the hoops."

Emphasis mine. So yeah, it seems there are some competition issues between makers that has been effecting patients.


OP, I don't know if this a true factor for your gf, but this issue has been on my radar because I was taking thyroid in the early 2000's. In fact, I went back on the meds briefly back in 2008 and did not see any results that time, vs. earlier success. When I read about this controversy a year or so ago, a little light went off. Related? I don't know. According to the first link, Armour Thyroid was reformulated in 2009 without notification to patients, and it has not been as effective since.


Additionally, does your gf eat wheat? Gluten? Apparently this causes thyroid problems for some, but the connection is still being studied.
posted by jbenben at 11:49 PM on September 17, 2012

If she is taking natural thyroid hormone replacement, she is not taking synthroid, which is synth-etic. The conspiracy she is probably refering to is that, in many people, it does lower TSH (lower means away from hypothyroid), but the symptoms remain and many doctors are unwilling to do anything at this point. While the target ranges have been lowered, it might still not be enough to get rid of symptoms such as fatigue and weight gain and hair thinning. Free T4 and T3 might still be low, even with a low TSH level. Apparently, natural hormones work better for many people. If she gets these, her doctor is already way more progressive than average. Overdosing can get her into hyperthyroid territory and seems risky in terms of long-term effects on what own function is left in her thyroid.
posted by meijusa at 11:53 PM on September 17, 2012 [1 favorite]

It sounds as though she's taking Armour and does not want to switch to levothyroxine/Synthroid. There are plenty of people who feel that Armour works better for them. If you follow the thyroid support forum there are some people who've gotten into battles with their physicians to keep an Armour Rx. Doctors tend to strongly advocate for Synthroid over Armour from both a price and consistency standpoint.

Whether she gets Synthroid or Armour it's essential that she follows the correct dosage which it sounds like she's not doing.
posted by 26.2 at 11:58 PM on September 17, 2012

If she's taking armour or similar, the pills are generally 60mcg so 3 pills = 180mcg which is not a "high" dose, unless she is also on synthroid as prescribed by her doctor?

TSH is a fairly meaningless number, its an 'indicator' of thyroid function but not an actual measure of her thyroid levels and doctors rely on it far too much when they can't even agree amongst themselves what is 'normal'. I've seen the upper limit of 'normal' be described as low as 1 or as high as 10. If the doctor is using TSH only then she should find an endocrinologist who will do a full thyroid profile and measure her actual levels.

I can totally understand her being upset (and that doesn't mean she's gone hyper or wants the drugs just to lose weight). Hypothyroidism can be a terrible illness and there is a great lack of consistency between doctors on diagnosis and treatment - some wont treat below a TSH of 5.5, some labs use 2.5 or 3 as the upper limit and some doctors will try a patient on synthroid/armour based on symptoms alone (and not finding anything else wrong). If you read the experiences of people with hypothyroidism, you'll find that its not a simple disease to be diagnosed and treated for, some patients suffer for years being told their labs are "normal", that they're depressed or they should eat less and exercise more (and some illegally import meds from mexico/canada because they are desperate) and when they finally get treated its a life changing experience. The medication gave them their life back and its not at all unusual for them to be upset at the idea of lowering the dose. They don't want their symptoms to come back. If she was prescribed the drugs then she likely didn't start at 3 pills per day so she likely knows how she felt at the lower dose they're now suggesting, if she still felt like crap every day, its not at all surprising that she doesn't want to lower the dose.

Your post sounds very confused. Is she on natural thyroid hormones (there are several brands but armour is most common I believe) or synthroid? Is she 18mg or 0.18mg (180mcg)? Are they wanting to lower her dose or switch her to synthroid? What is her TSH level?

If she's not happy with her current doctor she should find a new one. Preferably an endocrinologist. I'm sure if she looks online she can find a recommendation for a thyroid-sympathetic endo. She needs a doctor that will do full thyroid panels not just TSH and/or listen to the patient and treat based on symptoms not just TSH numbers.

I'm not sure what exactly you want? Are you just being a "man" about this - ie your gf is upset and your instinct is to try to "fix" the problem or find a solution? Don't bother, as neither a doctor or patient you have no place trying to 'fix' it. Be supportive and understanding. Ask her if she'd like help to find a new doctor. Educate yourself about both hypo and hyperthyroidism so that you can understand what she's going through and you know what to look out for if she is hyper (she could be hyper without symptoms but not much you can do about that). At the end of the day her dosage is between her and her doctor. If she is using prescription medication (and only prescription medication) then she can't just take more than prescribed, if she does she will run out before she's due to get more so if she's still on the same dose then her doctor must have agreed to keep her on it and monitor the situation for now.
posted by missmagenta at 12:16 AM on September 18, 2012 [6 favorites]

nthing missmagenta, both on the nonuniformity of doctors' treatments in response to TSH level and in her suggestions on how to help your girlfriend. It's great that you want to support her and there are definitely ways for you to do it, but whatever happens next is very likely to be just another tweak in her long-term treatment, rather than A Cure or A Fix, unfortunately.

I'd also like to repeat that the patient's response to varying levels of TSH can vary a lot between people. Ideally, she and her doctor will be able to work together to find a dosage that keeps her feeling well without long-term side effects. That requires listening and cooperation on both sides, of course. It is absoluely possible to feel ill and unwell on a thyroxine dose that the doctor insists is appropriate: sure, some people see the weight loss of a higher dose as a bonus but that really is not necessarily what's happening here.

On the other hand, one possible effect of too high a dose in the long run is heart damage, from continuous high blood pressure. Something she might want to discuss with her doctor is exactly what negative consequences they foresee if she continues on her current "too high" dosage.

Good luck with all this. I hope you can find some helpful resources and that things work out for your girlfiend's health.
posted by daisyk at 4:26 AM on September 18, 2012

My interpretation of the situation is this: she's hypothyroid, which comes with great side effects like depression and weight loss, and sees hyperthyroidism as the opposite end of the spectrum - feel better, be thinner. Of course hyperthyroidism is akin to speed and keeping your TSH level very very low can damage your body in all sorts of ways. IDK what you can do to get your gf to stop being ridiculous and listen to her doctors... tell her to get over herself?

Synthroid is not evil and has helped a number of people live better lives. Go w/ the levothyroxin generic if she's so against it
posted by MangyCarface at 6:42 AM on September 18, 2012

One more thing - as you've guessed, there are lots of different things that can go skewiff with the thyroid gland. If your gf decides your support will be helpful for her, you're going to want to find out what specific problem (her doctors believe) she has. For example, I could offer more advice based on my personal experience, but as that's with Grave's disease (autoimmune hyperthyroidism) it might not be applicable to her situation.
posted by daisyk at 7:47 AM on September 18, 2012

As your girlfriend is taking natural thyroid replacement, I'm guessing that she's hypothyroid (low hormone levels) rather than hyperthyroid (high levels) or Grave's disease. Some people with hypothyroidism are lucky enough to do well with simple synthetic hormone replacement with full remission of symptoms and a responsive TSH (pituitary) level that returns to normal. This is most likely in primary hypothyroidism, but there's also secondary and tertiary forms. Others only feel well with naturally derived hormone replacement and careful fine-tuning of levels. Three grains or 180 MG of natural thyroid replacement is not an atypical dose, and not even half a full hormone replacement.

I've said this on AskMe before, but thyroid hormones are involved in every cell in the body and are responsible for essential metabolic processes. Personally, it has been hell on earth to be either under- or overtreated, and nearly all physicians lean toward (massively) undertreating. That leads to so many ancillary health problems, but so can overtreatment.

Testing TSH is not a reliable indicator of treatment, especially once replacement hormones are started; the best labs to have done are Free T3 and Free T4. Those will show the direct, unbound levels of thyroid hormones available for use by the body. Many people do not feel well until those level are in the upper tercile or quartile of the "normal" range -- what many doctors consider "high" because they are past mid-range.

You can support your girlfriend by educating yourself, believing that she knows her body best and supporting her decisions. IMO, she needs a better doctor, one who will do the appropriate tests and use the results as a guideline in conjunction with her symptoms to guide treatment.

STTM has many articles of interest including how to find a good doctor if you want a place to start reading.

It can be difficult and frustrating to get adequate thyroid treatment, and I hope your girlfriend will have your informed support and good treatment from docs.
posted by vers at 3:09 PM on September 18, 2012 [3 favorites]

It's tough to get doctors to deal with thyroid shit sometimes, especially as a woman. It literally took me *years* to convince a GP that something was very wrong with my metabolism because they would not believe me when I reported my food intake and exercise levels and my TSH was normal. I'm 5'3 and weighed 150 lbs. eating < 1200 calories a day, had no car and walked at least 5 miles a day as a result. No one even touched my freaking neck. Eventually a doctor found thyroid cancer and I had my thyroid removed. Now I'm on synthetic hormone that they keep slightly elevated to reduce the chance of new potentially cancerous thyroid cell growth.

I finally found a doctor who believes what I say and actually relates it to my test results. She has adjusted me anywhere from .125 to .2, depending on my weight and other factors. I'm lucky; because I'm in remission they do Free T3/T4 tests in addition to TSH to monitor my condition in addition to regular ultrasound. This situation works because I trust her and she trusts me.

I've never heard of Armour; I've only ever taken levothyroxine, and it has worked very well for me.

There's tons of good advice here. Anyone with a medical condition should know what the diagnosis is, have providers they trust, and be willing to play with medication adjustments to get appropriate treatment. Your girlfriend may be suffering from other problems that she is mistakenly correlating to this thyroid issue. Or she may really be hypothyroid despite her TSH levels. The only way to be sure is with proper testing.
posted by xyzzy at 10:22 PM on September 18, 2012

Just to clarify, after vers's excellent comment, I only mentioned Grave's disease because in my case it was treated by removal of the thyroid gland, leading to hypothyroidism that's managed with levothyroxine. What I meant to convey was that hypothyroidism, and symptoms that seem to point to it, can come from many root causes with different best treatments.
posted by daisyk at 1:45 AM on September 19, 2012