Long question - hypothyroid vs. apnea?

[winknblinknnod]

Before being sent for a sleep study and diagnosed with mild apnea, I spent at least three years doctoring, trying to find out why I was so exhausted all the time, and why I was suddenly unable to formulate a sentence. I had such serious brain fog, I thought I had a brain tumor or early onset Alzheimers.

I talked to my GP about the symptoms and he referred me to a neurologist, where a CT scan came up normal. Apnea was never brought up, as I reported that I slept through the night.

Back with the GP, hypothyroidism was suggested and the TSH test came back at 3.7, which is towards the high end of normal, basically your body telling your thyroid gland to kick it up a notch. So, without further testing, I was put on thyroid supplementation. It did help for a while, but tiredness soon set in again. The thyroid dose was increased.

Then came the apnea diagnosis (thanks to hubby reporting I stopped breathing periodically while sleeping), and Cpap.

Once I was in treatment for the apnea, the fog cleared and I felt great! But each afternoon, (thyroid dose in AM) I was buzzier than buzzy, toe tapping, couldn’t sit still, very very odd. So I stopped the thyroid supplementation, and the hyperactivity stopped. I just felt well rested and pretty upbeat. Fast forward to the next time I had to talk to my GP, wherein I mentioned that I had stopped taking the hormone. He got really angry, and he scared me into resuming the dose. The hyperactivity returned. It’s so disconcerting, that I have cut the dose in half and not told him.

There is material on the Web about having both these conditions together, but nothing anywhere about apnea being misdiagnosed as hypothyroidism. The part I don’t like is that originally, only one type of thyroid test was done. Also, how do we know if I really have a thyroid problem if I don’t drop the dose long enough to figure it out?
I know this sounds like a real irresponsible and dangerous thing to do, but I feel better at the lower dose.

Anyone have any insight into this type of situation? I hate putting forth all this personal medical stuff but the doctor won’t even see me to discuss it until November and I am hoping Cpap folks might have some experience with this.

[gaggy]

I am one of those who has their thyroid destroyed by radioactive iodine. That was over 20 years ago. The reason for testing of sleep apnea began because of a yearly exam especially to have my thyroid levels checked. Once a year these are done to regulate medicine. The thyroid is very hard to deal with. Your levels can go up and down. That's what I thought my problem was. Yea right. I had gotten to the point that I could not put one foot in front of the other. I could not breathe and my oxgen level was extremely low. My response was up my thyroid medicine ,its not working. No way my doctor said. We have a serious problem. My blood pressure was out of sight, and I had been diagnosed with conjestive heart failure for 2 years. So after having an arteriagram, cat scans, chest exrays, oxygen levels checked it was on to the sleep study. Weird thing every one of those doctors said I needed a sleep study and I keep saying no it's my thyroid. That sleep study has been a lifesaver. I have a life now. DONOT stop the medicine. It can be quite serious but they do need to recheck to make sure you are on the right dosage. Sounds like you were not. Before I was diagnosed I had hyper instead of hypo. My hands would shake, my ear rings would shake it was horrible. So I think you medicine is a little much.
Hope this helps. I will be checking back.

[winknblinknnod]

thank you for telling about your experience. Sounds like your apnea is pretty severe. Even with my diagnosis of 'mild' it has made a world of difference to be on Cpap.

I am at a good level on the tyroid med now but it still isn't as much as before I started cpap in May. I'm not sure how to tell the doc...next blood test is Oct. 31 for a November appt.

[KimberlyinMN]

Ditto on being rechecked. My grandma ended up with severe osteoporosis when her thyroid medication dosage wasn't kept in check. (She went from 5'9" to about 4' 10".)

Kimberly

[Wulfman]

winknblinknnod,

Maybe one of the nurses on the forum could answer this better, but right off the top of my head, it would seem to me to be prudent (for your doctor) to let you stop taking the medicine until it should be out of your system and THEN get a blood test done to measure your thyroid levels. OR.....have a blood test done while you're still on it and then again after you've been off of it for a sufficient amount of time.

No sense in being medicated if you don't have to be.

Good luck,

Den

[gaggy]

My doctor has always told me it takes at least 2 weeks for thyroid medicine to change your levels. Once they get it at the correct level they only check levels once a year. I have to say dealing with a thyroid problem is a lot easier than sleep apnea. I had my study done 8/1/06 and I am still struggling but refuse to give up. I have seen what a difference it makes. Believe it or not I can tell the difference in a thyroid episode and my sleep apnea causing problems.

[gaggy]

Sorry, another point. Tell your doctor what you want. It is your body and you have control. Unless you insist it can get passed over. My daughter is a nurse and has always told me to speak up, it's your body, your money.

[schmidtwi]

I was also diagnosed with hypo-thyroid disorder and put on medication in April. Didn't notice much change in my energy levels at all. Dr upped the dosage once, don't get checked again till next year.

Then I was diagnosed with OSA in June, and been on BiPAP since then. Am sleeping much better, and have noticed some increase in energy, but I know it's a long process/therapy, and just keeping a positive attitude at this point.

I'd also be curious to understand if there's any relationship between the two. Maybe HT is caused by OSA??

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[beneyw]

Wow...with a TSH of that value, (mine is slightly higher but no symptoms) I am amazed your physician prescribed hormone therapy. I would definitely check with an endocrinologist before taking the advice of a GP.

[Linda3032]

Well, I think it's definitely something to be concerned about, however:

According to my Lab paperwork, TSH has normal limits of .35 and 5.5 and really should be compared to previous reports to determine what is normal for you. Mine normally runs in the 2 range. But a few years back it bumped up to 4.833 and we knew there was a problem (hyperthyroidism).

TSH is actually a hormone secreted by the Pituitary gland in the brain which senses that the thyroid isn't producing enough hormone. Therefore, the pituitary secretes more to try to get the thyroid to perform properly. (doctors and nurses can correct me if this is wrong).

Primary Hypothyroidism is a disease of the thyroid gland. Determined by a high TSH and a normal or high T4.

Secondary Hypothyroidism is a disease of the pituitary gland. Determined by levels of normal or low TSH, and low T4 and FT1.

Hopefully, the doctor knows which one is diseased and considered the other levels.

My doctor told me that the thyroid levels need to be checked every few months when first taking the synthetic thyroid medicine - in order to get the correct dosage.

I've never experienced tiredness or hyperactivity. But I would guess that the lower dosage is probably the best for you - since you feel better with it. But as others have said, DO NOT STOP TAKING THE MEDICINE....

If it were me, I would definitely be talking to a different doctor if mine refused to consider how I felt or treated me like an idiot.

(and this is just my opinion and typed from info I received regarding Thyroid Profiles, Functions, and Tests when I was diagnosed).

[Linda3032]

I think my polar bear has hypothyroidism and isn't taking his medicine.

[kteague]

My mother in on Synthroid for her thyroid. First of all, changes to thyroid medication are best not done by abrupt stopping and starting. But I too would probably have cut my dosage back when showing signs of being nervous and hyper. I'm not sure if your thyroid is supposedly just malfuntioning or if it is also enlarged. If it's significantly enlarged, I could see that crowding the throat, though I'm not sure it would be at the same level most apneas occur. Would be interesting to hear if anyone with an enlarged thyroid had apnea that disappeared after either shrinking the thyroid or removing it.

Why do we (yes, me too) get intimidated by our doctors, who work for us? If you feel the need to hide your dosage and question his decisions only silently, something is wrong with this picture. You need a doctor you can feel comfortable with having open dialog about your treatment. It sounds like you don't trust his judgement, so he may not be "the one". You don't have to be accusatory or confrontational to say, "I feel I don't have enough information to be comfortable taking thyroid medication. What further information would a thyroid panel give us?"

If he responds defensively or condescendingly, you have a decision to make. But it's too important to not know for sure. Best wishes.
Kathy

[kteague]

Linda - did your polar bear have a complete thyroid panel before being prescribed meds? Hey, that's not our own Bookbear, is it?
Kathy

[Linda3032]

Good point regarding whether the enlarged thyroid gland could contribute to a crowded windpipe and sleep apnea -- in fact I asked my doctor that question. My gland was enlarged prior to starting the medication and I asked the doctor that since I have sleep apnea if it should be removed.

In fact, I asked two doctors (one of my surgeon). Both said that the thyroid gland is actually butterfly shaped and curves around the windpipe, but that unless it was drastically enlarged that it would not push against the windpipe. Even the surgeon said to leave it alone.

And then, the swelling went down after I started the medicine.

[snoozie_suzy]

Hey Linda!

Where have you been? Haven't seen you around the board for what seems like a couple months.

Hope you are well!

Suzy