TSH -- Same Stuff, Different Day

[meow]

 Venting, just venting.

SSDD.

My TSH levels have been just barely in the normal range for the past 6 months, 2 blood tests. My GP, who is usually very sympathetic and responsive, has waved this away as OK. But even the lab report noted that SOME patients will experience sub clinical symptoms at these levels.

While admitting my crappy food choices this summer, I also suspect this might be making it harder to lose weight.

She was willing to try switching my generic levothyroxine to Synthroid, as they have a new gelcap that is supposed to be absorbed better. But I suspect a trip to the endo is in order.

Every symptom of my SJS and Hashi's is raging away right now. SIGH.

[Nomad]

As a side note...I had weird bloating with Synthroid and I may have other issues...but that is another story.
The bloating was caused by gluten and additives in Synthroid.
I had it compounded and voila...no bloating and it seem to work better too.
I was told by two doctors that people with autoimmune issues "sometimes" have oddball issues with Synthroid due to the gluten and additives.
If you take Synthroid and it doesn't work as well as you think it should, it might be because of this oddity.
Doctors who take the full panel of tests including the Reverse T3, seem to be more sympathetic to thyroid issues and are willing to look at the possibility of T3 playing a role in symptoms and prescribinb a little T3 to help things along (if warranted).
One of my doctors who is really "into" this says that he thinks many women need a little T3, but the key word is "a little," because it is very powerful and a little goes a long way.

[meow]

The endo did try T3 about 10 years ago. Even a micro dose make me flushed and shaky. But that was then, and things may have changed since then. I definitely need to see him.

The new gel caps of Synthroid are supposed to avoid the gluten/starch problems, so we'll see. I never noticed a difference between generic and name brand, but if this helps it's worth the extra money.

[irish]

I am curious as to why the doctor doesn't just increase the dose a tad and see what happens. I had one doc who wanted my TSH below 1.0 and I always told him that was not good for me as I felt a little wired at times with the higher dose of med. Now, many years later it seems that I do better with the higher dose of levothyroxine. If you are having so many issues it is probably a good idea to see an endo and get things reassessed. Good luck. Irish

[Tharrell]

I still don't understand all the thyroid side effect issues that can happen I really don't. My tsh have always been mostly slightly below normal and seldom at normal for years. Every doctor told me that was ok. Then nodules happened which were deemed ok after FNA. After they got to big for comfort an ENT thankfully decided to perform total thyroidectomy. All of a sudden all my doctors thought I would feel better, that all my mystery symptoms would go away. This was before sjs diagnosis. The biopsy came back as papillary cancer. Of course without thyroid the tsh shot up which was wrangled back in to normal range with three dose adjustments. So before surgery the tsh was 0.4-0.8 and after we are keeping it around 4. From what I read people really feel different if it just moves up and down a bit. Me? Nothing at all! I saw no improvement in any symptom! Even my endo at MD Anderson finds that hard to believe. Then a year later, out of the blue, my tsh shot up to 45! Again, no symptoms. My rheumatologist was suprised to hear I didn't finally gain much needed weight. We found a seperate medical problem for that, pancreatic insufficiency, another endocrine disease. We wrangled the tsh back down by switching to synthroid at a much higher dose. I now take 200 mg six days a week and 300 mg once a week. I'm due another tsh test and waiting for appointment.
My point is, I have been at both ends of the spectrum and it effects me not at all one way or another.
What's wrong with me? I'm just lucky I guess?

[irish]

You are just being you. All of react in different ways. Having a thyroid out doesn't very often cure some of the symptoms of the thyroid disease like one would think. I did research on this also as my son has severe Hashimotos with many bad symptoms and is on 25 mgmn of Methotrexate a week. He also has nodules and is always having to have his TSH checked because of it going up and down. Sad to say that having the thyroid out doesn't cure the hashimotos or much of anything else the way I get it. But, it does get rid of the nodules. Right now his come and go so they are not talking surgery. Good luck. irish