One man's life with hypothyroidism

Summary of my attempts to get a levothyroxine dosage increase

6th August 2015 Paul Chris Jones

In 2010, I suspected I had hypothyroidism. I went to a doctor and he performed the TSH test. The results showed I had a TSH of 3 U/mL. This was within the normal range so the doctor sent me on my way. Four years later, my symptoms had worsened so I saw another doctor. This doctor tested my TSH again and found that it had increased to 6.38 U/mL. The doctor, therefore, started me off on 50µg of levothyroxine. After that, I sought higher and higher doses, either by pushing the doctor or by outright lying to doctors. Here's a summary of my experience so far.

2010

ME: I think I have hypothyroidism.

DR #1: You’re fine. At least, according to this blood test, anyway.(1)

2014-15, Canada

ME: I think I have hypothyroidism.

My girlfriend: You’re fine. The only thing hypo about you is hypochondria.

More time later

ME: I think I have hypothyroidism.

DR #2 (2): You’re fine. You just need to eat more.

ME: Here's $860 in cash to do some blood tests.(3)

DR #2: Ok, let’s do some blood tests. *rubs money all over body*

One week later

DR #2: This blood test says you do have hypothyroidism!(4) I’m starting you on 50µg of levothyroxine a day.

ME: Yay! Finally I will be happy again!

Two months later

ME: I am still not happy again. I need a higher dosage.

NURSE: Your latest blood results say you do not need a higher dosage.

ME: May I see the results?

NURSE: *sigh* Ok, here you go.

ME: These results say I do need a higher dosage. Can you even read? (5)

DR #2: Oops, my mistake. You are right. I will increase your dosage to 75µg a day.

Two months later

ME: I am still not happy again. I need an even higher dosage.

NURSE: Your latest blood results say you do not need a higher dosage.

ME: Didn't you learn the first time? Show me the results.

NURSE: *sigh* Ok, here you go.

ME: These results say I need a higher dosage too! What's wrong with you?

DR #2: Yep, you're right. You do need a higher dosage. Sorry about the mix-up. So now I will increase your dosage to 100µg a day.

ME: So anyway, do you know what's causing my hypothyroidism?

DR #2: *shrugs*

Another two months later

DR #2: Hm, your TSH isn’t going down.

ME: Does that mean I need a higher dosage?

DR #2: No, it means I will keep your dosage the same for a few months to see what happens.

ME: No, please raise it. I can’t stay like this for months. I still feel unwell every day. And I have brain fog.

DR #2: Brain fog. Ha! That’s just a part of getting older.

ME: Please.

DR #2: (unsure) Hm… ok, here’s another 12µg a day.

ME: Is that all?

2015, England

ME: Doctor, doctor, please can I have some more?

DR #3: Ok, here’s 125µg a day. And you can even take 150µg on the days you feel bad. By the way, there's no need to do a blood test. Your symptoms are more important.

ME: Oh cool. By the way... hey where'd he go?

DR #4: He was only a temporary doctor here. I'm the permanent doctor.

ME: Oh... okay. Hey, listen, can I have even more than 150µg please?

DR #4: No, we need to do a blood test first.

ME: But my sense of smell is still really bad, and that's a symptom of hypothyroidism.

DR #4: *shrugs*

ME: Anyway I don't have time for a stupid blood test because now I’m moving to Spain.

2015, Spain

ME: Spanish doctor, can I have some drugs pleasy please?

DR #5: No, because I don’t believe you’re ill. Where’s your evidence?

ME: Here are some documents. (These documents were photoshopped to make it seem I was on 200µg of levothyroxine instead of just 150µg.)

DR #6: These documents are acceptable. So here’s 200µg a day.

ME: K thanks bye.

To be continued...

Notes

1. TSH was 3 mlU/L

2. Doctor’s name was Dr Marc Robin, and the clinic’s name was Crea-med.

3. $125 to sign up as a new patient, $180 for a 30-minute consultation with the doctor, and $520 for blood tests. This seems expensive, but to be fair, I could have had the blood tests for free if I’d waited one month for my health insurance card to arrive.

4. TSH was 6.38 mlU/L

5. FT3 was 3.4 pmol/L, whereas the target range is 3.5-5.7

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Paul Chris Jones is a writer and dad living in Girona, Spain. You can follow Paul on Instagram, YouTube and Twitter.