Hypothyroidism - general questions
July 2, 2009 12:45 PM   Subscribe

I'm in the usual boat (at least from what I've seen sifting through the relevant tags on here): a hell of a lot of hypothyroidism symptoms, and a doctor insisting I don't have it. History and actual questions inside.

(I know you're not my doctor, but I have honestly no idea who to ask or where.)

Preamble: my mom has hypothyroidism, which she only found out about somewhat recently.

Her sister went to an endocrinologist, had tests done, the endocrinologist diagnosed hypothyroidism and recommended immediate family members test for it too.

My mother, displaying a lot of the symptoms, tested and brought the test results to her normal doctor, who pretty much immediately put her on Levothyroxine. Her symptoms went away, and she's been happy ever since.

I'm displaying a fair amount of the symptoms myself:

- Issues losing weight (I can't seem to shed the extra weight I've gained, no matter how much I exercise, how much I diet, and so on)
- Constantly feeling tired and weak
- Constantly feeling depressed, moody and very easily irritated (I'll snap for no reason)
- Feeling cold all the time (winters are hell)
- Muscle / joint pain for no discernible reason
- Issues remembering things and focusing (I feel fuzzy-headed pretty much all the time)
- My hair feels drier and more brittle than it used to be
- I can't seem to feel rested no matter how much I sleep
- My skin is dry and brittle and keeps cracking in spots (especially my heels)

I had two blood tests done by the doctor I had in my home country.

#1 had TSH at 4.80.
#2 had TSH at 5.22 and T4 at 1.1 (within the norm).

Doctor then said I ought to start taking Levothyroxine like my mother.
Then - before I could start - I moved to a different country (UK) and had to get a new doctor. Who took a look at those tests, said "let's just get another done to be sure" - and the result for test #3 promptly came back "normal", though I haven't got the faintest idea what that means since I never got to see the numbers. Had another test done to doublecheck, which also came back "normal", don't have the numbers for that either.
At which point I was promptly informed that it's not hypothyroidism, it's not anemia (tested for that too), it's just stress / lifestyle, I need to get over it on my own. Which I've tried, but nothing seems to be helping - if anything, it's getting worse.

My questions are the following:

- What do I do now? I'll be moving and therefore getting a new GP soon enough (two months and a couple of weeks), should I just tough it out until then and see what the new GP says?

- Or should I track down an endocrinologist on my own and go over my GP's head? If so, how do I track one down? Can't seem to have any luck on the internet and I'm not very well-versed in health matters. Would hospitals have one? All hospitals?

- I found a leaflet in a magazine advertising this thing. I am very skeptical, especially as I've found nothing on the internet either supporting or disputing their claim of "this does help". I'd be wasting my money if I were to get this thing, wouldn't I?

I'm just sick and tired of feeling sick and tired. I'm 27 and feel like an old person :(
posted by sailoreagle to Health & Fitness (17 answers total) 6 users marked this as a favorite
What's the referral system where you're living? Can you even access an endocrinologist without a referral from a GP?

Clearly something is going on that needs investigation, so you need to find a GP who will investigate. My daughter went through something very similar over the last few years. In her case, the problem turned out to be PCOS. There are a whole range of hormonal imbalances which can cause the symptoms you're experiencing, and some of them are managed more through lifestyle changes than through medical intervention. So find a GP that you trust and when they tell you that your tests for "condition X" have come back normal, explain that you're sick and tired of feeling like crap and want them to investigate other possible causes.
posted by Lolie at 12:59 PM on July 2, 2009

I completely understand the "feel like an old person" and your frustration with this. I have a family history too and went through much the same runaround as you are experiencing.

I went to an endocrinologist twice before he agreed the numbers lined up with what I'd been feeling for months. My doctor (and I switched doctors too because of this) put me on a low dose of Levothyroxine, and it made a world of difference. That was not even two years ago. Six months ago, it had to be raised to a higher dose. And just recently I started feeling tired and depressed again, had lab tests done Monday, and I've again had my prescription changed to a higher dosage just today. All this after no one taking me seriously for ages!

So, what can you do right now?

Well, first of all, make sure you really hit them with that family history.

The difference in the doctors' opinions boils down to: first guy is taking history into account and weighting it along with the numbers, while second guy is a by-the-book, numbers-only type. You can try another doc, or really reinforce to second guy that the whole reason you are so concerned is your family history combined with your symptoms, and that you are willing to do what it takes to be taken seriously. If that means giving you the lowest possible dosage of the drug and then having you come in to re-evaluate after six weeks, you're up for that. You want to be fully involved and committed with this treatment. You are not just looking for some quick fix for a few extra pounds, etc.

Secondly, chart those symptoms.

Again, show that this is a real health concern. Your hair is dry and brittle. Keep watching it, because the next thing is when it starts falling out if you just run your hand through it in the shower. Heels dry and cracked? They'll get worse. Tired all the time? Have you actually fallen asleep at work, or nodded off and been late for an appointment? Documenting this helps to assure your doctor you're not a hypochondriac, and it also makes them feel they are covered--they don't want to have someone come in later and say they messed up and now they are liable in some way because you fell in normal range and they went ahead and prescribed meds.
posted by misha at 1:16 PM on July 2, 2009

I have nothing to offer on how to find someone in the UK, but I am so, so sorry you have to deal with this!!!

Those TSH numbers are way too high.
posted by jgirl at 1:34 PM on July 2, 2009

My heart absolutely goes out to you, and I encourage you to keep pursuing this. I went through something similar several years ago -- although in my case I couldn't even get a doctor to do a simple TSH test -- and sometimes persistence is (maddeningly) necessary.

I know you don't feel like you have the energy for pursuing this, but that's a reflection of your disease, not an indication that you're overreacting or being a noodge.

I think misha laid out a course of action far more eloquently than I could, so I'll just add a few thoughts. First, I found it helped a lot if I downplayed the weight-related symptoms. I noticed that you listed it first, and so did I when I was pursuing treatment for hypothyroidism, but it seemed like that was all the doctor needed to hear before proclaiming "eat less and exercise more", then sending me away. [In my case, I finally sought out my gynecologist because I knew he would listen to me. He sent me to an endocrinologist who tested me and then everything was fine.]

Second, I think that your strong family history of hypothyroidism suggests that a TSH test may not be enough to properly diagnose you. A very quick google turned up this, which appears to be a pretty good overview of TSH, T3, and T4. So perhaps something as simple as a full thyroid panel might be all it takes to fully understand what's going on.
posted by DrGail at 1:36 PM on July 2, 2009

Unfortunately the NHS considers anything under 5.0 to be normal, which is anything BUT normal. Ideally it should be under 2.5. You really do need to see an endocrinologist, but without private health care, I'm not sure how you're going to accomplish that. Are you in the UK long term?
posted by elsietheeel at 1:40 PM on July 2, 2009

Well, after I typed up what I know and looked at the comments already received, I seem to be off base, but I spent some (read as: a lot of) time on this and figured I'd post my input anyway knowing that you know IANAD, IANYD, IANAN, IANYN (nutritionist).

Do you eat a lot of raw cabbage? Yes, seriously.

The thyroid gland controls your metabolism, and iodine influences the thyroid – 2/3 of the body’s iodine is in the thyroid gland - an iodine deficiency can result in slow mental reaction, weight gain and general lack of energy. You can add iodine to your diet by eating lots of seafood, onions and kelp.

I do NOT recommend iodine supplement as it can be harmful if prescribed incorrectly, and I am not your Doctor or Nutritionist, so I can only generally suggest eating Iodine rich foods and getting your Doctor’s opinion about an Iodine Supplement.

Now as to the cabbage question (and I do eat a lot of raw cabbage with a wonderful Asian-inspired dressing) – there is an element in cabbage that prevents proper utilization of Iodine.

And a side note about Kelp: If you are on Thyroid meds and eating kelp/a kelp supplement (since it, kelp, affects the thyroid), you may need less meds than you are on and should ask your Doctor about retesting/needing less meds.

I also recommend reading any one of Ann Louise Gittleman’s books, as well as Harvey and Marilyn Diamond’s book Fit for Life.

Remember, IANAD/N, I just love the study of how food affects the body.
posted by goml at 1:43 PM on July 2, 2009

Your TSH numbers are high. "Normal" range is 0.5-5.0, and some endocrinologists feel that the high end of normal should be something closer to 3.5, since they still see patients with symptoms at the higher end of the normal range.

I, too, spent a frustratingly long period of time trying to find a doctor who would take me seriously. I had an endocrinologist tell me I was normal when my TSH was 4.80. Two and a half years later, I found a doctor who actually listened to me, and he retested. My TSH was 6.3. I'm being treated with Levoxyl (levothyroxine) but I still have some symptoms, though my blood test results are now back in the normal range.

If your TSH, T4, T3, Free T4, and Free T3 are in the normal range but you are still experiencing hypothyroid symptoms, that is known as subclinical hypothyroidism. In my personal experience, it is extremely difficult to find a general practitioner who has the experience or comfort level to treat subclinical hypothyroidism. You need to get to an endocrinologist. You need to have the full range of tests, not just TSH - have them measure T4, T3, Free T4, and Free T3 as well. Also have them check for Hashimoto's (which is an autoimmune disease where the immune system attacks the thyroid, causing hypothyroid symptoms). And keep pestering the doctors or going to new ones until you find one that will listen to you and treat your symptoms. Good luck!
posted by bedhead at 1:47 PM on July 2, 2009

You need to have the full range of tests, not just TSH - have them measure T4, T3, Free T4, and Free T3 as well.

Ideally, not just thyroid hormones should be tested. Because the endocrine system is interconnected, a malfunction in one part of it often throws the others out of whack too. That said, unless you're paying the total cost yourself there's often some kind of testing protocol by which doctors are bound and insurers/goverments often require simple, less expensive tests to be run before they'll pay for more extensive testing.
posted by Lolie at 2:43 PM on July 2, 2009

I'm going to assume you're female, and second that PCOS mention. I've got it, and my pre-treatment symptoms were pretty similar to yours. As Lolie noted, symptoms are myriad and hormonal and managed more through lifestyle changes than anything else - and the thing is, many people with PCOS have normal labs.

The long story short is that if PCOS is suspected, a high protein/low carb diet will probably be recommended. Just a dietary change alone helped me lose weight, got rid of the being cold all the time, etc, and has been great for brain fog, fatigue and depression. So it's something you can try even without access to an endocrinologist - info on low-carbing is all over the web, and it won't hurt to try.
posted by chez shoes at 2:52 PM on July 2, 2009

"Normal" varies depending on who you ask. In 2003 the American Assoc of Clinical Endocrinologists lowered their guideline for normal from 5.0 to 3.0. The relevant organization in the UK may or may not have similar guidelines. I would say try to find an endocrinologist. Can you get a referral from your GP?
posted by gingerbeer at 2:56 PM on July 2, 2009

Have you seen your GP only once about this issue? If so, make another appointment, point out that you know you're at the very high end of the 'normal' scale, stress the severity of your symptoms and your family history, and le them know that you really think you should see an endocrinologist because you're feeling like crap. Keep a symptom diary as well and show it to your GP at every appointment you make until you get the referral. Have you been with this surgery for a while? Do you know the best time to get their utmost attention? In my experience the afternoon after baby clinic is always the worst time to see the GP, and first appointment in the morning is best (fresh, not frazzled, not already running late and trying to keep the appointment to two minutes).

You can also go to a new GP, if there is more than one in your area. You're not tied to one just because that was the first one you registered with. Or alternatively, if your GP's surgery has more than one GP ask to see one of the others. Where were your tests done? Ask for documentation of the results as you want all of the information for your records and for when you move.

Even if you do choose to go private you will still need a referral from your GP. Most consultants won't see you otherwise (none of them are supposed to).

Best wishes - I really hope you're feeling better soon.
posted by goo at 3:13 PM on July 2, 2009

Yeah, agreeing with others: your TSH is outside the normal range. If you're comfortable doing so, go back to the doctor and ask to see those numbers rather than just hearing "normal". Optimal TSH is 3 or below; you could say that you'd like to know if you'd feel better in this optimal range. In reality these things are really dependent on the person; my GP thought my TSH was normal (after my thyroid was removed, I had radiation and I started on thyroid meds), but my endocrinologist begged to differ and upped my meds substantially. (Thyroid cancer survivors need to have a TSH as close to 0 as possible.) There's a lot of misinformation out there about TSH, and doctors seem to not be on the same page about it. These days some doctors treat hypothyroidism even if the TSH doesn't indicate it, because it seems to improve quality of life. That's the kind of doctor you need.

That said, it's worth investigating further without putting on the hypothyroidism blinders. Maybe it's an adrenal problem. If your GP isn't willing to work with you to solve this and get you feeling better, then ask him/her for a recommendation for someone who will.
posted by Hildegarde at 4:21 PM on July 2, 2009

This is what I would try. Call your doctor's office and request a copy of your tests results for your records. At least then you'd have more information to decide if it is low thyroid. I've had to be a total pain about getting copies a few times. Most office staff will give them to you but it's low on their priority list. Be nice, be polite but get your test results.

Most tests have the normal ranges listed. If not, ask the doctor's office for them. Every lab has slightly different ranges for the same test. If your TSH ranges are normal but closer to the high side, ask your doctor if you can do a trial of Levothyroxine or Armour for a couple of weeks to see if it makes a difference. Remind the GP of your family history and that you've read the TSH level recommendations were lowered in the U.S.

This understanding led to the recommendation, more than six years ago in January 2003, by the American Association of Clinical Endocrinologists, that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0."
( AACE statement http://www.aace.com/newsroom/press/2003/index.php?r=20030118).

The TSH Reference Range Wars: What's "Normal?"

If you're having no luck with the doctor and still think you're having trouble with low thyroid, ask to be recommended to an endocrinologist because the way you're feeling is not normal for you even when you're under stress and something is not right. Many doctors would rather pass you on to someone else if it's something they can't figure out easily.

This might be easier in the U.S. since you can self pay. The U.K. use to have some real problems with referrals. I think because it cut into the doctor's compensation (not sure about this, just remembered someone complaining years ago about having trouble seeing a specialist until she ended up in the hospital with an infection).

It sucks having to jump through hoops to feel better but sometimes you just have to until you can find something that works. Best of luck to you!
posted by stray thoughts at 4:37 PM on July 2, 2009

You may want to discuss the HUNT Study with your physician. It surveyed around 30,000 Norwegians considered to have normal thyroid function, and found a modest association between TSH levels in the upper "normal" range of 0.5 to 5 mUI/L and some of the markers of cardiovascular disease (increased total cholestrol, increased LDL, increased triglycerides, decreased HDL).

A more recent publication from the HUNT Study found a positive association between TSH levels and coronary heart disease morality in women, but not men.

The American Association of Clinical Endocrinologists updated it's guidelines to 0.3 to 3 mIU/L around 2006.
posted by zentrification at 5:25 PM on July 2, 2009

I had never even heard of hypothyroidism when I was diagnosed with it. Somehow my wonderful doctor decided on a test based on my random symptoms.

So I'm sorry you're having trouble with your diagnosis.

I just want to mention that one of my friends had trouble with her diagnosis because she never registered high TSH levels. And yet she has some of the most difficult hypothyroidism I've witnessed.
posted by bunnie at 8:41 PM on July 2, 2009

Thought I'd post a final result in case this gets unearthed in a search: it was indeed hypothyroidism. Took several more exams and a lot of persistent asking, but if there's a better feeling than my doctor saying "I'm really sorry about this, turns out you were right, here, have a prescription", I can't think of it at the moment.
posted by sailoreagle at 3:32 PM on September 22, 2009

Yay! I'm sorry you had to be persistent to get what you needed, but I'm really glad your persistence paid off. I hope you're feeling better now!
posted by goo at 5:55 PM on September 24, 2009

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