Replies to This Discussion

Permalink Reply by BMD on June 26, 2011 at 5:03pm

Hi Char. Your story with hypothyroidism sounds very familiar to my own. After being rx'd Synthroid for a couple of years, my labs are all within range, but I still have most of the lousy symptoms you describe, chronic fatigue being the worst one. I recently convinced my endo to add Cytomel (T3), but I still have a 4-to-6 weeks to go before I know if it is providing any benefit. In the meantime, my early reaction to Cytomel is not that positive. Chronic fatigue has increased even more.

Anyway, if this therapy doesn't work, I plan to try desiccated thyroid. Unfortunately, for some of us with thyroid issues, the road is long and bumpy to finding treatment that makes us feel normal. Finding an endo who is willing to work with a patient with thyroid issues is also a challenge. If I can be of any help, please let me know.

Bruce

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Permalink Reply by Char on June 26, 2011 at 6:08pm

Thanks for responding, Bruce. I hope you soon find some relief for the fatigue. I assume Cytomel is a synthetic thyroid hormone for T3? I'm sorry you are not finding any improvement yet. If you decide to go the desiccated thyroid route, please let me know how things go with finding an endo. Have you visited this site before?

http://www.stopthethyroidmadness.com/

Char

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Permalink Reply by BMD on June 26, 2011 at 7:01pm

Thanks, Char. You have it right with Cytomel. It's synthetic T3.

Oh yeah, I've visited the website you mention. Kelly WPA turned me on to it awhile back. The listing on STTM of medical folk in my area (Atlanta) who treat thyroid issues leaves a lot to be desired. I just hope that my current endo will continue working with me until I get these symptoms resolved. He's an outstanding diabetes endo and practices out of Emory. I believe if I continue with the Cytomel that he is has rx'd that he will sign off on desiccated thyroid later if Cytomel fails. He seems reasonable and respects my point of view, so I'll see.

I want to beat this chronic fatigue in the worst kind of way. I'll be sure to keep you posted if I go the desiccated thyroid route. Kelly and many others seem to find the relief they need with desiccated thyroid. I just have to be patient I guess. :-)

Have you had your Free T4 and Free T3 tested?

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Permalink Reply by Char on June 26, 2011 at 7:57pm

Bruce, I don't know for sure about whether she's tested my "Free" T4 and T3. I may run by her office to get a copy of my most recent lab results. My older lab results don't show them being tested. I have been with this endo since 1990 and she saved me back then! She's a reasonable person and very knowledgeable.

I think it's difficult to be patient when you feel this way, but that's the path we're on :) Thank goodness you're in a good medical community at Emory!

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Permalink Reply by BMD on June 27, 2011 at 12:21am

Char, the reason I asked you about the Free T3 and Free T4 is because most doctors only test for TSH. TSH testing is actually how my hypothyroidism was detected. However, it isn't the most accurate test since it is testing the thyroid stimulating hormone produced by the pituitary gland. The FT3 and FT4 tests test what the thyroid directly produces.

Just this past week my wife had a call from here PCP wanting to start her on Synthroid because her TSH was slightly out of range. My wife and I both agreed that she should not start this therapy because two weeks prior she had seen her GYN and was tested for FT3 and FT4, and both of those lab results were within range.

I agree; it is tough being a proactive patient, and it can be even tougher if you have a long-standing relationship with your doctor. However, we have to advocate for ourselves. I'm very cynical when it comes to fully trusting the medical community, big pharma, and insurance industry. There are some wonderful doctors out there, but we just have to look hard sometimes to find them. ;-)

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Permalink Reply by Char on June 27, 2011 at 5:08am

Last week I phoned some of the endos in our area (spoke with their nurses) to see if they ever prescribe desiccated thyroid hormone. I found only one who has, but only "rarely." This particular endo at one time was in private practice with my endo. She is not, however, taking new patients at this time.

I agree. We have to advocate for ourselves and while it would be disappointing and sad for me to leave my endo...I have already entertained the thought.

That is an unreal story regarding your wife! I'm so glad you both had the knowledge to justify declining the PCP's recommendation. Do you feel GYN's are more open to testing FT3 and FT4?

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Permalink Reply by BMD on June 27, 2011 at 12:18pm

Char, I honestly don't know if GYNs are more inclined to test for FT3 and FT4 than endocrinologists or GPs, but in my wife's case, requesting the lab tests from her GYN was not a problem at all.

My wife is pre-menopausal and has been experiencing some of the typical symptoms including increased fatigue. Her GYN suggested blood work, and my wife asked that a thyroid panel be included. She made sure that FT3 and FT4 levels were tested and specifically asked her GYN for those two tests. Her GYN was very agreeable. I'm confident that her GYN would have treated hypothyroidism and written a Rx if the condition were present.

If your current endo is unwilling to test your FT3 and FT4 levels, maybe a GYN would be willing to order the labs. It's worth a try. You could call ahead and inquire just as you did when seeking an endo who Rx'd desiccated thyroid. It really shouldn't be this hard to get the health care that we desire. Unfortunately, it is. Let me know if you're successful. Good luck! :-)

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Permalink Reply by Natalie ._c- on June 30, 2011 at 3:28pm

If the free T3 and T4 are normal, but the TSH is out of whack, then it means that the thyroid is failing. The pituitary needs to put out more TSH to get normal results from the thyroid. If your wife has an elevated TSH, your doctor's reason for wanting to prescribe Synthroid is to take some of the burden off the thyroid gland. If she doesn't take Synthroid, the gland will most likely become enlarged because of working so hard to secrete the hormones, and while it doesn't usually get severe in this country, it can. I had my thyroid removed because it had gotten so large it was interfering with my swallowing. This is probably a result of the fact that it began to fail when I was in my mid-20's (Hashimoto's) but I wasn't diagnosed or treated for it until I was in my 40's. The bad part is that they have to cut one of the nerves that controls the vocal cords, and I can no longer sing, which was one of my favorite hobbies. But that's the BEST case scenario -- my hygienist ended up having one vocal cord paralyzed completely, and can only talk in a raspy whisper (she had cancer).

So you might want to rethink your opposition to Synthroid -- knowing what I know now, if I had been diagnosed and offered it in time, I would have taken it in a heartbeat!

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Permalink Reply by Super_sally on June 30, 2011 at 6:42pm

IF FT3 and FT4 are "normal' but TSH is high - that means the thyroid is struggling to put out enough hormones to keep FT3 and FT4 where they should be. Overtime even the high TSH won't be enough to drive the thyroid and then FT3 and FT4 will also become low. In both cases thyroid medication is key - with the dose adjusted to make sure TSH is normal (ideally 1 - 2) and the FT3 and FT4 are well within the reference range.

If FT3 and FT4 are high, but TSH is very low, it means that the thyroid is acting by itself - without following the pituitary's signals. This is hypERthryoid, and is usually treated by medication to suppress the thyroid, radiation, or surgery - depending on the cause.

If FT3 and FT4 are "normal" but TSH is very low, it can indicate a pituitiary problem, or it can mean that the TSH is suppressed from taking thyroid meds. In this case the treatment will have to depend on where the FT3 and FT4 levels are, as TSH is no longer a reliable indicator of thyroid function.

To know if she had a thyroid problem or not you need to see where her numbers are in relation to the reference range and interpret these in relation to how she is feeling.

The range for thyroid hormones in the reports is very wide. Some doctors will consider a TSH of 5.5 is still normal. However, ideal TSH for most people is 1 - 2. FT3 and FT4 also have a very broad range. If they are at the bottom of the range they may be considered normal by some doctors, but the ideal levels where most people feel best are actually at least middle to upper 1/2 of the reported range.

So you can see that managing thyroid is not so straight forward as simply being "in-range".

Hope this helps.

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Permalink Reply by Char on June 30, 2011 at 7:29pm

I'm learning so much from you and others :) Thank you!

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Permalink Reply by Char on June 30, 2011 at 7:44pm

Hopefully Bruce will see and read this post! Thank you for sharing your personal experience with this important information.

Was surgery possible for your damaged vocal folds? Are you able to vocalize to speak, but not sing with a range of octaves?

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Permalink Reply by Natalie ._c- on June 30, 2011 at 10:09pm

What the surgery did was take out the upper range of my singing notes. I used to be able to sing 2 C's above middle C, and now, I can only get up to the first C above middle C with difficulty. So I can't sing either soprano or alto, because both these parts go above that. I could theoretically sing tenor, but I can't get down to the D or C below middle C that tenors are expected to sing. And I wouldn't look right in the tenor section, anyway, LOL!!

The vocal cords themselves aren't damaged -- they just don't have the nerve impulse that would allow them to "half-close" which is what produces the high notes. My speaking voice is not affected, because we don't normally use that "half-closed" position when speaking.

I don't regret having the surgery in terms of the fact that swallowing is an important thing to be able to do, but I DO miss the singing!

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