TSH high but no antibodies present. What does it mean and what next?
May 20, 2018 9:42 AM   Subscribe

Thyroid question - My TSH is above where it should be but my new PCP says there's no need to treat because of an absence of antibodies. Help me understand what this means and what my next steps are.

I'm mid 30s, female. I have some but not all of typical symptoms - mainly fatigue, feeling cold, dry skin, brain fog. I always have had a very good memory and still have a good long-term memory but now I have a terrible short-term memory-especially if I am interrupted I have no idea what I was just doing.

I have a history of hypothyroid in my family (mother, half-sister) which is why I started keeping an eye on my thyroid levels a few years ago. I started having it tested around 2012, it was 4.21 then, doctor said it was borderline and that we should keep an eye on it. Because of job/insurance changes I've switched PCPs twice since then. Doc #2 tested it around 2016, it was higher, started me on lowest dose synthroid (.25 micrograms) and I felt a bit better but no huge difference. I lost my insurance and stopped taking it (that doctor left the practice, I would have needed to see someone new to renew my prescription). Now I have insurance again and am feeling more fatigued than ever (I used to train 6 days/week for running, I ran several marathons, now I can keep up with my fairly demanding job but that's pretty much it - I have no energy left for chores or exercise. I made an appointment with a new PCP, he wanted to test my TSH and test for antibodies. TSH level is now higher than ever (4.58) but since there were no antibodies present he says there is no need to treat. He referred me to getting an ultrasound on my thyroid to see if there were nodules present and said I could get a second opinion from an endocrinologist but said that they would say the same thing. I am reading Mary Shomon's 'Living Well with Hypothyroidism' now and have done a lot of reading online but I am really having a hard time differentiating the woo from the solid medical advice.

I have high-deductible insurance (ACA plan) so I'm pretty much going to be paying for everything out of pocket. Cost is a big worry for me but I don't want to live my whole life so tired if it can be helped. I am in a HCOL area and PCP visits can run above $300 so I'm worried this is all going to get really expensive really quickly.

-What does it mean if I have a high-ish TSH but no antibodies? Does it mean I do not have hypothyroidism if no antibodies are present, regardless of TSH level? I am aware that my TSH is not very high, just barely over the level where it would typically be treated, but isn't it better to treat because of the side effects of hypothyroidism?

-Should I get an ultrasound on my thyroid? I am thinking it won't show anything and it'll be a huge cost for nothing - None of my doctors have ever felt anything abnormal around my thyroid on my neck

-Should I see an endocrinologist? Again, I am worried it will be a huge cost for nothing, especially if they agree with my PCP that with no antibodies there is nothing to treat. Location is NYC if anyone has one to recommend.

-Basically I just want to understand this all better, any resources for that would be really helpful. I am willing to change diet and other lifestyle factors if that is the best way to deal with it.
posted by matcha action to Health & Fitness (18 answers total) 8 users marked this as a favorite
I would see a good endocrinologist. The thyroid numbers that would make you personally feel and function better may not be the generally “acceptable” range, and an endo is more likely to be aware of that and willing to treat you to the numbers that will make you feel better. There are also a couple of different thyroid tests that can be run, that may be more or less revealing.

My partner went through a lot of nonsense with his PCP and then saw a good endo and is doing much much better now; it was time and money well spent.
posted by Stacey at 10:06 AM on May 20, 2018 [3 favorites]

Your PCP's treatment philosophy is absolutely not universal - in eight years seeing four different doctors for primary care, none of them have ever mentioned antibodies as a reason to treat or not treat my hypothyroidism, which presents with TSH numbers near yours and not many severe symptoms.

I'm definitely no doctor but TBH the "you don't have antibodies so no medication for you" thing doesn't even make sense to me - who cares why your TSH is high, the point is that your body isn't getting enough thyroid hormones and it's turning up the TSH in an apparently fruitless effort to get your thyroid to make more. Levothyroxine is the standard treatment for this situation, whether the cause is an autoimmune disorder or something else entirely.

In short, your doc's assertion that any endocrinologist would back him up is flat wrong, and more to the point, I would discontinue seeing a doctor who stood there as you told him "I am so fatigued I can't exercise, and feeling bad in other ways as well, and this non-habit-forming medication which another doctor prescribed to me and which one commonly used lab test indicates I ought to be taking helped me before, can you write me another prescription?" and didn't treat that request as an obvious yes. If the endocrinologist is more expensive, I'd consider switching primary doctors first if that's a possibility for you.
posted by potrzebie at 10:13 AM on May 20, 2018 [8 favorites]

I would get a second opinion and push for thyroid medication to see if it helps since you do have symptoms. As potrzebie mentions, levothyroxine is the standard treatment. You'll be given a small dose to start and it's pretty harmless if it turn out you don't need it. You'll also know pretty quickly after starting if you don't need it.

Last year I had slightly elevated TSH but my doctor didn't mention anything about antibodies; I also didn't see anything indicating it on my blood test results. Either way, she put me on thyroid medication because I told her my symptoms were unacceptable to me (I was falling asleep in the middle of meetings at work!). After a few months we retested and my TSH was back down and I was feeling much better.
posted by joan_holloway at 10:15 AM on May 20, 2018

I'd see the endocrinologist and then get a second opinion depending on how the endo appointment goes.

My other tactic is something like this:
* Well it can't be x/we don't need to treat for x because whatever
* Okay. Well this still leaves me with symptoms A,B and C which are interfering in my life and making it harder for me to perform at work. How can you help me with that?
posted by bunderful at 10:28 AM on May 20, 2018 [1 favorite]

Go to the endocrinologist and get the ultrasound. Your PCP is not a specialist, so it’s pretty shitty of them to try and discourage you by saying they’ll just agree with him/her. The latter doesn’t have to show nodules per se; my ultrasound last year showed my thyroid was not homogenous and I eventually was diagnosed with veeeery bigining states of Hashimoto’s. My sister has it as well, and by the time she was diagnosed, she said her ultrasound looked like someone had peppered her thyroid with buckshot.
posted by romakimmy at 10:52 AM on May 20, 2018 [2 favorites]

See an endocrinologist. If cost is a concern, try the fellows' clinics at one of the academic medical centers. Fellows are internists who are getting extra training in a subspecialty, so you would see them + a professor. Columbia, Cornell, NYU, and Sinai all have good endocrinology reputations, not sure if one is better than the others.
posted by basalganglia at 11:23 AM on May 20, 2018 [1 favorite]

I have had thyroid problems for years, and never have heard the thing about "antibodies."

I had a nodule on my thyroid and had an ultrasound, which led to other tests, but it is a good place to start. I would suggest you see the endocrinologist because they are specialists in this. I do have Hashi's and have taken medication for, let's see, 18 years now. It is cheap and works well, ie I have more energy, my hair stopped falling out, I can remember things, my skin isn't ashy and puffy, I am not cold and tired all the time.
posted by chocolatetiara at 12:00 PM on May 20, 2018

You poor woman. I felt like death on a much lower TSH. Sounds like your doctor is still using the VERY outmoded reference range that sets 4-5.0 as the upper limit of "normal". The National Academy of Clinical Biochemistry recommended reducing the upper limit to 2.5 in 2002, and the American Association of Clinical Endocrinologists began supporting an upper limit of 3.0 the following year. So yes, your TSH is high, much higher than "normal."

It also sounds like your doctor thinks the only cause of hypo is Hashimoto's thyroiditis. As others have pointed out, this is not the case (also a small number of people with Hashi's don't test positive for antibodies). He doesn't sound like he knows much about thyroid.

For me, personally, Mary Shoman's book was what helped me start to get well. On a woo-scale, she's relatively low. Fair warning though...endocrinologists are also likely to undertreat you. I'm also pretty wary of the woo, so I searched for a medical doctor who also treats holistically. They're a rare bird, but being in NYC you might be able to find someone. My current doc does sometimes try to recommend stuff that I think is a bit out there, but I just straight out tell him I'm not comfortable with that and he backs off.

The good news is that thyroid meds, whether synthetic or natural (and you may need to experiment to see which works best for you) are usually inexpensive, so once you get on them and get adjusted, you shouldn't be that much out of pocket even under your health plan.

Good luck.
posted by Preserver at 12:12 PM on May 20, 2018 [3 favorites]

Check your memail.
posted by Violet Blue at 1:10 PM on May 20, 2018

I have Hashimoto's -- the antibodies thing is only to do with whether or not you have Hashimoto's and has nothing to do with whether or not you have hypothyroid. I was diagnosed with hypothyroid when my TSH was around 4 and I was having every symptom in the book -- my doctor said, "It's high normal, but the current school of thought is to treat more aggressively than the old guidelines" and put me on levothyroxine and it was like night and day after it kicked in.

Then I had the antibody tests that showed it was autoimmune hypothyroid. See the endocrinologist if you can; fire your PCP if you can -- the "your TSH isn't high enough to treat" I can sort of excuse, but thyroid disease is incredibly common and not knowing that an absence of antibodies has nothing to do with whether or not you have it would make me question this doctor's advice in general.
posted by camyram at 2:49 PM on May 20, 2018 [1 favorite]

I am totally not a doctor, but I don't think what your doctor is saying is correct at all.

My understanding is that if you have TPO antibodies, that could be a sign of Hashimoto's, an autoimmune disorder that attacks your thyroid. If your TSH test result is high but still in the normal range, and especially if you are symtomatic, your doctor might also do an antibody test, to see if Hashimoto's might be causing your TSH numbers and your symptoms.

But my understanding is that the Hashimoto's antibody test is in no way required for a diagnosis and treatment of a thyroid problem. Take that with a grain of salt, because again, I am not a doctor. But I do believe that an out-of-range TSH test should be enough to put you on medication for hypothyroidism. And your TSH results ARE out of range, plus you are super-symptomatic.

I base all this on my recent experience. At my annual physical in February, my TSH level was 4.8. According to the lab, the standard range is 0.450 - 4.500, so 4.8 was out-of-range. I was not particularly symptomatic, although I seem to be losing hair. :-(

My PCP said the TSH test result could be a blip, though, and had me come back in six weeks for a re-test. At that time, she actually had four tests done: TSH, T4Free, Thyroid Stimulating Immunoglobulin, and Thyroid Peroxidase AB (the test for Hashimoto's, I think). All of those tests came back normal, so my PCP said I should just come back in six months, for another re-check. She also said I should come back sooner if I am symptomatic.

So, the opposite of the dismissive (and I believe incorrect) approach of your PCP.

My advice: if she is on your insurance or it otherwise works with your budget, go see my PCP, who is in NYC.

Also, on preview: what camyram said.
posted by merejane at 3:18 PM on May 20, 2018 [1 favorite]

My endocrinologist told me that there are something like seven different antibodies that can be involved in autoimmune hypothyroidism, but there are lab tests available for only two or three of them. A positive result on any of the available thyroid antibody tests is meaningful, but a negative one is not meaningful at all.
posted by chromium at 3:55 PM on May 20, 2018

I'd tell your doctor you were on levothyroxine before, it helped your symptoms and you'd like to try again , with examples of what you did on the medicine vs now.

The perscripton is cheap (I paid $11 without using my insurance for a sixty day supply). It is so worth being on.

You can see a specialist but always lead that you've been prescribed it in the past and it helped.
posted by AlexiaSky at 3:58 PM on May 20, 2018 [1 favorite]

I’ve had hypothyroidism for almost 20 years with a family history of Hashimotos. I don’t think any of my doctors have even tested me for it, preferring to just treat the hypothyroidism with medication as necessary(aiming for TSH levels under 3)

I would definitely see another doctor - even a different GP if an endocrinologist is too pricey.
posted by scrute at 8:57 PM on May 20, 2018 [1 favorite]

Did your doctor test your (f)t3 and (f)t4 at all? Were they in range? Lower end of the range?

FWIW, I had a lot of symptoms that pointed to thyroid problems, my antibodies are at most on the verge of not normal (e.g. if the cut-off is 35, mine were 35 once) and an ultrasound showed a sliiiiightly diffuse picture and one nodule. I went to three endocrinoligists (!) before one offered to let me try the medication, the first were like, "nope, that would be doping, this isn't a weight loss drug" etc. when I was just trying to go back to normal. As someone above mentioned, there may also be a difference between numbers that are "normal" (whatever that means) and ones you feel good with. TSH especially has quite a wide range, and it seems pretty weird to assume that everyone can live happily with a, say, 3. But a LOT of doctors don't think the same way, so if you can get some recommendations (online, from people you know) so you don't have to spend money on more than one, I'd do that.
posted by LoonyLovegood at 9:26 PM on May 20, 2018 [2 favorites]

I am not your doctor, and I'm not an endocrinologist. But in general, the approach to a patient with an elevated TSH (most labs would say TSH above 4-5), involves repeating the TSH with a free T4 to see assess the degree of hypothyroidism. If the free T4 is low you have your diagnosis and may benefit from synthroid. If the free T4 is not low, you have subclinical hypothyroidism and replacing it with synthroid may not do much. In that case, you need to look elsewhere for the causes of the clinical symptoms you describe (not all fatigue and low energy is caused by hypothyroidism, for example).

The lack of antibodies may suggest that there isn't an obvious autoimmune cause to the hypothyroidism. While, autoimmune disease is the most common cause of hypothyroidism, it is not the only causes. So an elevated TSH without antibodies absolutely does not rule out hypothyroidism.

See if you can get a free T4 done, and if it's low maybe go see an endocrinologist for further workup and management.
posted by reformedjerk at 12:32 PM on May 21, 2018

I am seconding this advice, especially given your high deductible insurance plan: "I'd tell your doctor you were on levothyroxine before, it helped your symptoms and you'd like to try again, with examples of what you did on the medicine vs now." If you can communicate with your doctor any way besides making another appointment (email, voicemail, RN?), try that first.

My doctor actually did the opposite of what yours did--my TSH was a teensy bit high and I was fatigued etc. She prescribed me levothyroxine. When I asked about why it might be high, she said it didn't matter and that she rarely tests people for thyroid antibodies because "nearly everyone has them."

If your doctor won't prescribe it, see another one. Regardless, consider finding a new PCP if you don't love everything else about this guy. His explanation is crappy and his dismissal of your concerns is even crappier.
posted by purple_bird at 2:33 PM on May 21, 2018

I am not your doctor, nor am I an endocrinologist. However, as an OB/Gyn, I would second what reformedjerk said above about free T4 and antibodies. And FWIW, if you are a child-bearing age female who is trying to get pregnant, the reproductive endocrinologists actually recommend a TSH of under 2.5, so you would definitely merit treatment by those criteria.
posted by eglenner at 8:59 PM on May 21, 2018

« Older Outlook, meet Excel.   |   Need a course in godmothering, stat Newer »
This thread is closed to new comments.