Re: Re: LABS BACK/RAI BAIT-Chris

[Guest guest]

Hi Chris-

You have made some excellent points in this post. Especially about TSH and

FT4 levels.

Take care,

dx & RAI 1987 (at age 24)

> It goes without saying that this is a very complicated disease.

> There are no cookie-cutter answers with either the ATD dosing, or the

> thyroid replacement hormone. We can get the one-size-fits-all

> mentality from our doctors all day long. However, we ARE all

> different: We have different genetic backgrounds, different medical

> histories, different environmental influences, different stress

> levels, and different dietary habits. Each one of us knows our

> bodies better than anyone else, including our doctors.

>

> I agree with you and Simon and Elaine that Alyssa's doctor may not be

> unreasonable in suggesting that *a patient* drop the meds for 2 days

> and then resume at half the dose of PTU. It may not be unreasonable

> for SOME people, but many of us saw what happened the last time this

> particular patient tried this.

>

> Holly, you had a TSH of 37, and apparently the short-term withdrawal

> of meds did you more good than harm. I'm sure there are plenty of

> other reasons, besides a very high TSH, that a patient might be

> advised to drop the meds cold turkey--myxedema coma comes to mind, or

> a dangerously low FT4, or an intense allergic reaction, etc.

>

> But other than situations such as these, the decision to play with

> the meds this way needs thoughtful consideration--all labs must be

> taken into account, all symptoms, and if available, patient history.

>

> In Alyssa's case her TSH was recently at something like 9, and has

> dropped to 5.98. Her Free T4 is at l.0, and what's so awful about

> that? Considering the average lab range of 0.71 to 1.85 or so, this

> is NOT exactly a cut and dried case of hypO. Her symptoms? I

> understand that she wants to lose some weight, and that's

> understandable, but is that enough to call for drastic measures?

> Especially when in her individual case, doing this previously was

> practically a disaster? Does she want to have repeat a performance?

> I'm sure it was not pleasant for her the last time she tried this.

>

> I'm no expert, but then who really is? We all have to experiment

> with any of the thyroid-related meds to see what works best for us.

>

> When the Free T4 is high, the TSH is low (usually) and when the FT4

> starts dropping, it takes a while for the TSH to come back up

> (usually).

>

> If the FT4 is low, and the TSH is high, once the FT4 starts coming

> back up, the TSH can lag in this situation also...... taking longer

> for it to drop (usually). Why panic over it?

>

> So when you consider that her FT4 is at 1.0, and her TSH has been

> dropping nicely, quitting the meds for 2 days is unnecessary (in my

> opinion), especially when the glaringly simple solution is to drop

> the meds from 100 mg a day to 75 per day for a while, then drop to

> 50, after further testing.

>

> She must consider that the last time she was told to drop the meds

> for 3 days (not a whole lot of difference between 3 days then and 2

> days now) her hyper symptoms skyrocketed. Not sure what her labs

> did, but I have seen labs zoom practically overnight in some cases.

>

> As far as dropping the PTU from 100 mg to 50 mg, I am certain there

> are people who can do this quite easily, as there are those who can

> drop from 10 mg a day of Tap or carbimazole, to 5 mg. There isn't a

> whole lot of difference between managing PTU dosing and managing Tap

> dosing, just a pill strength ratio of 10 to 1.

>

> Personally, I've found it necessary to accomplish this by dropping

> from 10 mg, to 9 mg, to 7.5 mg, to 6 mg, to 5 mg, and continue taking

> EQUAL amounts 3 times a day (every 8 hours). Otherwise, my levels

> will rebound. Of course, I UNDERSTAND that NOT everyone needs to be

> this careful, but I have found that I DO.

>

> Three years ago my FT4 was at .49 (range 0.71 to 1.85). I was told

> to drop from 15 mg of Tap, to 10 mg, to 5 mg -- all inside a period

> of 4 weeks. He had seen other patients pull this off without a

> hitch, so he also figured I could as well. Even at that low of a

> FT4, my doc had the sense to refrain from telling me to drop the meds

> cold turkey.

>

> This would be the approximate equivalence of going from 150 mg of PTU

> to 50 mg of PTU, in 4 weeks. By week number 4, I was still doing

> OK. Then overnight I went hyper, my heart went wild, and I ended up

> in the hospital. Maybe the next person could have easily made this

> rapid transition. But to play it safe, as you don't know for sure

> how you personally will react, it is probably best to lower the meds

> slowly, not irratically--such as dropping the meds cold turkey for a

> few days, cutting a larger dose in half, taking alternating doses,

> whatever. It's generally not a good idea to treat the thyroid like a

> yo-yo!

>

> Since Alyssa had already tried this and did not react well, I based

> my reply on her history and her particular situation, which is

> apparently more consideration than her doctor is giving this.

>

> I saw her post over at mediboard yesterday, and remembered how she

> feels about her doctor vs. internet advice. Her doctor has gone to

> school for this so she must know something.... Alyssa has driven this

> home to us before. I figured discretion was the better part of valor

> and chose to bow out. Then she posts over here and specifically asks

> me about this. I told her what I thought. I didn't tell her how to

> split the 50 mg pill 3 ways, because in my humble opinion, I felt

> that dropping to 75 mg at this point, without a 2 day withdrawal,

> would be a better choice for *her*.

>

> I didn't gather an opinion poll from this group before I expressed my

> take on this, I just went with what I already knew about her case,

> what I felt about her current situation, and let her know exactly how

> I felt she SHOULD handle it, because she asked me!

>

> When she came back and told me to calm down and she was going to

> follow her doc's advice anyway, I decided that I'd had enough and

> told her so. I also didn't get input from the other group members as

> to whether I could speak my mind about this turn of events or not,

> and didn't intend to.

>

> If this had been a new person, and I had no idea of his or her

> history, I would NOT have been so adamant about it. I would have

> suggested that this method doesn't *usually* have good results, but

> since we are all individuals, it would not be unreasonable to try it,

> even though a 1.0 FT4 doesn't really call for it.

>

> Two people I know who took PTU for a few years and then went into

> remission, went to painstaking efforts to slowly taper the meds,

> after discovering that quick withdrawal had a rebound effect which

> had repeatedly put them back at square one.

>

> Other people I know who have successfully eliminated Tap and gone

> into remission did the same with it, very slowly reducing by shards.

> I haven't gone into remission yet, possibly because I didn't have the

> benefit of others' experiences to help guide me through the first 19

> years. The newbies are very lucky to have something more than

> clueless doctors and stale medical textbooks to rely upon for their

> information. Others' experiences speak volumes!

>

> So we are all entitled to our opinions. If people post here asking

> for advice, they may get 20 different answers. They can take that,

> and what their docs say, sift through it, and make their own

> determination about what sounds best. I'm not arguing with that! I

> gave my opinion based on what I know of Alyssa's case, and next time

> I'll know better than to get involved with this one again.

>

> Yes, Alyssa has made a chioce that feels right to HER. Of course,

> she is entitled to make a decision based on what she feels is best

> for HER. I apologize for trying to help her avoid making the same

> mistake twice. What WAS I thinking?