Help me help my thyroid
September 5, 2011 12:54 PM   Subscribe

Am I being a paranoid android or do I have valid concerns regarding my thyroid?

I am in my lower twenties and had a few blood tests back in June. I wasn't expecting to find anything but just figured it would be a good idea. I got the results back and the blood work indicated that I have elevated TSH levels. It was at 8.88. The doctor said that it would be best to test it again in 3 months and test my free T4 as well.

Three months later and the next blood test came back that my TSH levels had risen to above 10 while the free T4 levels were normal. The doctor over the phone said that it is nothing to be worried about and that the endocrine system is pretty complicated and it would be best to get tested again in 6 months. I didn't like this answer so I scheduled an appointment for tomorrow to talk with him/her.

The reason why I'm so concerned is that last year (out of no where) I got incredibly depressed and anxious. This correlated with the end of Summer and the start of a new school year so I just chalked it up to issues with school. Almost every day I felt like I was on the verge of breaking down would usually start crying. I have been *battling* with it ever since and I would also have this persistent brain fog where my brain barely seemed to work and my thoughts just seemed to move super slow. I have been noticing that I've become more forgetful. I have had other strange symptoms like eyebrows that fade out, I've had issues sleeping, I've always had pale skin. I've also always had dry skin as well as cold hands/feet. Although there are a few typical symptoms that haven't happened for me yet. I never feel cold and haven't put on weight since I'm fairly active and have a fast metabolism.

I'm also very concerned because my mum has thyroid issues. Back before she was diagnosed with hypothyroidism, she went through an extreme depression (among other issues) and bounced around from doctor to doctor until someone finally determined that her hormones were the issue. She was put on medication and has been great ever since.

Right now I feel like I'm being an insistent patient that thinks something is wrong with them. Do I have grounds for my concerns or am I just worrying too much? Does anyone have knowledge of hypothyroidism and think that this might be what is going on? How do I approach this doctor that already seems to have his/her mind set and just let him/her know that I would like a more thorough investigation?

Thanks a lot.
posted by CZMR to Health & Fitness (20 answers total) 4 users marked this as a favorite
Have you told your doctor any of this? Maybe they're taking the 'wait and see' approach because you haven't mentioned any symptoms.
posted by missmagenta at 12:59 PM on September 5, 2011 [1 favorite]

How are your fingernails? Bendy and weak and flakey? That was the first and only symptom for me before I was put on levothyroxine.

I think it's very odd they aren't looking into it further and putting you on meds. Why keep waiting 6 months? Levothyroxine -- pretty much the standard first pass drug for hypothyroid (there are others, though) -- is a) cheap as dirt (about $14/month without insurance) and b) safe as far as I know. You just pop the pill in the AM and wait a while to eat.

Obviously IANAD.
posted by kestrel251 at 1:10 PM on September 5, 2011

I had symptoms like that and told the doc I would like to get my thyroid checked. My thyroid levels were not that far from normal, but the doctor's opinion was that if I weren't having symptoms, she wouldn't treat for it, but since I was having symptoms, it was worth treating. We're going to retest soon to see if the treatment has helped any.

All of your symptoms sound like typical thyroid stuff plus with the family history it seems like there's a connection there (IANAD). I wouldn't worry about being too pushy; you have actual problems you need to get fixed. If this doctor doesn't listen to you try another one. But do make sure the doc understands that you have actual symptoms that are interfering with your quality of life.
posted by bleep at 1:11 PM on September 5, 2011

Response by poster: That could be. I didn't know anything was wrong until I got the first blood results back and have been connecting the dots since. I'm going to tell them everything tomorrow but I am just afraid that he/she will still insist that I need to wait 6 months. What if that happens?
posted by CZMR at 1:11 PM on September 5, 2011

P.S. I was put on a low dose of levothyroxine when my TSH was 6. I have Hashimoto's.
posted by kestrel251 at 1:12 PM on September 5, 2011

Find another doctor.
posted by bleep at 1:12 PM on September 5, 2011

If your doctor is refusing to treat your medical symptoms for six months, you should find a new doctor who will take your symptoms seriously. Taking a "wait and see" attitude for half a year when you're suffering is unacceptable, and you shouldn't stand for it.

I suspect that your ongoing anxiety is making you worry about your doctor's reaction. It is likely that your doctor will help you, and that you'll be able to work together on this. But if you can't, find a new doctor and keep making noise until your symptoms are addressed.
posted by decathecting at 1:14 PM on September 5, 2011 [1 favorite]

You need a new doctor. My endocrinologist told me a TSH over 2 was high; mine was 14 when I was diagnosed with Hashimoto's. I did have symptoms, though; my period wouldn't stop, I was cold and tired all the time, and I had gained weight.
posted by WorkingMyWayHome at 1:16 PM on September 5, 2011

Oh, and I also had brain fog. Eyebrows thinning at the outer edges can be a symptom, but I think it's a later symptom (Wikipedia concurs).

Can you get to an endocrinologist? If you can manage it with your insurance/finances, I would do it. They would know exactly what to do for you.
posted by WorkingMyWayHome at 1:26 PM on September 5, 2011

Doctors use a couple of different scales for measuring "normal" TSH; some think it's fine anywhere between 0.5 and 5.0, while others think a narrower range between 1.0-3.0 is really where most people feel good. Either way, a TSH that starts out at 8.8 and rises to more than 10 is clearly a problem, whether you're feeling obvious symptoms or not (especially given that you have a family history of thyroid disorders). I had endless weirdness with my TSH in my early-mid 20s, and it took me a few years to get any doctors to take it seriously; turns out I had Hashimoto's disease and (eventually) thyroid cancer. They're both highly treatable -- but it takes a diagnosis to treat them.

In short: ask your doctor to refer you to an endocrinologist. I don't know why your doctor isn't taking this issue seriously, but you have the right to be treated by someone who does.
posted by scody at 1:47 PM on September 5, 2011 [4 favorites]

Find a new Dr. A TSH of 10 is not borderline--you need help. I lost a year of my life feeling sleepy, foggy and fat because my MD wanted to wait and see. (My work suffered, I'd fall asleep and not pick up my kids from school, etc.) I finally got enough energy to scream at her in the office that if she didn't want to treat me, I'd have her medical license. My TSH was over 15 at the time. I ended up with a specialist, but I complained to the state medical board loud and long.

Mary Shomon is the internet expert.
posted by Ideefixe at 1:54 PM on September 5, 2011 [2 favorites]

I'm going to tell them everything tomorrow but I am just afraid that he/she will still insist that I need to wait 6 months. What if that happens?

Go to another doctor. Your levels aren't even remotely borderline - they're 2-3x 'normal', depending on the scale your doctor uses. I could understand them not wanting to treat if you weren't having any symptoms but if you outline what you have here and tell him/her about your family history and they still don't want to treat, go elsewhere.
posted by missmagenta at 2:05 PM on September 5, 2011

Response by poster: Thanks a lot guys. I feel a lot better knowing that I'm not being unreasonable. I am going to tell the doctor everything and see what he/she thinks.
posted by CZMR at 7:27 PM on September 5, 2011

Are you in the UK? The British Thyroid Guidelines say that treatment is recommended for people with a TSH > 10 mU/L. Not all GPs are aware of these guidelines, but he/she should be able to get advice from a local endocrinologist or biochemist who is. While I think it's understandable that your doctor might want a repeat level to confirm, I don't think you should have to wait 6 months when you're symptomatic.
posted by *becca* at 7:52 PM on September 5, 2011

Is your doctor an endocrinologist? If not, at your appointment you should ask for a referral to get checked out. Your family history + the current lab weirdness should be enough to justify it.

Your doc should, I hope, understand that the TSH level is an indicator of how hard your body is working to create thyroid hormone. If your level has risen, then it's harder and harder for your body to keep up. Additional tests can be done to see what's going on -- see if he/she would be willing to check for Hashimoto's thyroiditis (it's an autoimmune disease), and/or run a test to look at your T3 levels. My first endo looked at my T3 levels to see what was floating around waiting to be processed. That plus the TSH gives a pretty good idea of how hard your system is working to keep the T4 at a good level.
posted by hms71 at 8:36 PM on September 5, 2011

Agreed that you should talk to your doctor, and if they won't do anything more to treat this then you should see somebody else. But the people who are piling on your MD here seem to be jumping the gun a bit -- it sounds like you haven't mentioned your symptoms or family history to your doctor before. I know you're just now connecting these vague symptoms with the lab results, and your doctor probably should have asked specifically about such symptoms after seeing the elevated TSH rather than assuming you weren't having them. But don't write your physician off just yet, because it sounds like s/he has been working with an incomplete picture of the situation. Go in for your appointment, bring a list of the symptoms and history (you could even just print your question as you've written it here) so you don't forget anything, and see what the doctor says.
posted by vytae at 9:48 AM on September 6, 2011

Response by poster: I just visited the doctor... She was completely militant to everything I had to say. She said that the issues that I was facing could in no way be caused by my thyroid. She said that a TSH level of 10 is not very serious because she said "she sees levels in the hundreds". She thought I was just trying to blame my issues on my thyroid like everyone else and that there are real "psychological issues" that need to be dealt with and gave me two business cards of some mental health professionals that she "recommends".
posted by CZMR at 10:09 AM on September 6, 2011

She said that a TSH level of 10 is not very serious because she said "she sees levels in the hundreds".

She is out of her mind, or lying, and/or an absolutely incompetent terrible doctor. A TSH in the 100s is A) rare, and B) exceedingly and dangerously hypothyroid.

You absolutely need to find a different doctor.
posted by scody at 10:51 AM on September 6, 2011 [1 favorite]

TSH in the hundreds is not that rare (I see it about once every 2-3 weeks in a small general hospital) but nevertheless that doesn't mean that anything less than the hundreds doesn't require treatment. A TSH above 10 mU/L clearly suggests sub-optimal function.

It would be useful to know where you are. This isn't the kind of issue that would normally need an endocrinologist in the UK (I can't speak for elsewhere) but your GP doesn't seem to be that helpful. Could you see another GP?

If you're in the UK, memail me, I may be able to provide more specific advice.
posted by *becca* at 3:07 PM on September 6, 2011

Your Dr. must have a helluva practice--is her waiting room crammed with fat sleepy people who can't remember anything? And, yes, find a specialist or someone else. And consider filing a complaint with whoever gives medical licenses. Deciding that you need mental health counseling rather than actual treatment is insensitive to put it mildly.
posted by Ideefixe at 5:31 PM on September 7, 2011 [2 favorites]

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