Here we go again ..........

Kari · Post by **Kari** » Thu Apr 03, 2014 10:36 am

This time it's the thyroid. It's around 27 years since I had radioiodine treatment for my graves disease/hyper thyroid condition. Not too long thereafter, I became hypo thyroid, and have been on synthroid/levothyroxine ever since, and my TSH readings have been within normal range until now

. My latest reading is very low, indicating that I'm back to being hyper thyroid. The free T4 reading is normal, BUT free T3 is low!!!

Perhaps this partially explains why I cannot get my BM's under control no matter what I do, despite having resolved my LC according to my latest colonoscopy. Over the past year or so, my BM's have increased in frequency from 1 to 2 a day, to 2 to 3 a day, and I have not seen anything resembling norman for at least 2 and a half years

.

Anyhow, my biggest concern now is to get my thyroid hormones back into balance. I discussed it with my PCP, and we decided to decrease levothyroxine from 88 mcg to 75, and add T3 to it. I will also switch to NT. Then I will retest in 8 weeks and take it from there. I'm very hopeful that my energy level will get better, and my constant, low level depression will resolve if this can be accomplished.

Tex - thanks for reminding us how important it is to also test free T3 and T4 levels; if it wasn't for that, I would not have insisted on checking them!!!

Love,
Kari

Post by **tex** » Thu Apr 03, 2014 11:09 am

Hi Kari,

I'm sorry to hear that your thyroid is becoming unruly again. It seems odd that your body would suddenly begin to use more T3 even as your TSH goes down. But yes, that could certainly cause D.

Please keep us posted.

Love,
Tex

Lesley · Post by **Lesley** » Thu Apr 03, 2014 11:11 am

Oh Kari! How I identify with you! Not about the thyroid (although I am going to get it checked again), but about the "here we go again...".
This is sch a hard disease, and doctors do NOT understand it. SO difficult to get help.

I am going to start LDN. Have you thought about it?

Kari · Post by **Kari** » Thu Apr 03, 2014 12:14 pm

Tex - this is the first time I have tested T3, so the possibility exists that it has been low all along. I have always had low energy, with the difference lately being that despite feeling exhausted, I have had trouble staying asleep at night, which is a symptom of hyper thyroid. The more I research on thyroid hormones, the more confused I get. There seems to be a possibility that the problem can be with the Pituitary gland. Perhaps it is time to find a knowledgeable endocrinologist (if such a thing even exists :))???

Lesley - I have read the threads on LDN with great interest, and have it in the back of my mind. However, when trying any kind of supplement or medication, symptoms seem to get worse instead of better. Can't even seem to tolerate antihistamines :(. Anyhow, I wish you best of luck with LDN - you certainly are due for a break after everything you've been trough and are still dealing with.

Love,
Kari

Post by **tex** » Thu Apr 03, 2014 1:38 pm

Kari,

I have a similar problem in that my Free T4 is always low. Like you, my TSH started out in the middle of the normal range, but it has progressively dropped to the bottom of the range, and below range, while my Free T4 has remained at the bottom of the normal range or below range. And like you, I suspect a pituitary problem.

I've never bothered to try to see an endo though, because it seems that virtually all of them "go by the book", and worship the TSH, and they either don't know how to treat for Low Free T4, or they're either afraid or otherwise disinclined to attempt to do so.

I wonder if too much of your T3 could be going to reverse T3.

Love,
Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Apr 03, 2014 2:35 pm

Kari,
Bugger bugger bugger.

I am not sure what chaos MC does to all our organs, systems, cells etc, but man, it impacts big time. It is like it only lets our bodies get 80% of the way to wellness!

Hope the med adjustments fix the imbalance, that the energy increases

Hugs
Gabes
Xo

Kari · Post by **Kari** » Thu Apr 03, 2014 2:53 pm

Tex,

I had not heard of revers T3 until you mentioned it, so I went to the internet and found a good explanation, and your suggestion certainly seems plausible. Depending on my results when I test again, after being on the new med for 8 weeks, I will bring it up with my PCP.

Sadly, you're probably right about finding a good endo. As I said above, I have always been tested for TSH only. When I told my endo who treated me originally that I was constantly feeling fatigued, even though the TSH had normalized, he told me to drink more coffee

. Anyhow, I'm grateful to have an open-minded PCP, so perhaps by tweaking the meds, we can eventually get all the measures in line, along with control of my symptoms

.

I assume that since your T3 is OK, your energy level is fine? If that's the case, and you don't have any other symptoms, you probably don't need to worry too much about your T4 and TSH being low???

Love
Kari

Lesley · Post by **Lesley** » Thu Apr 03, 2014 2:54 pm

This is my 10th day on lamb, potatoes and apple sauce. Nothing has changed so far. I am going to add Oatmeal because that is also one of the safe foods according to enterolab. And taking my forst dose of LDN tonight.

Kari · Post by **Kari** » Thu Apr 03, 2014 3:01 pm

Gabes,

Thanks for your note - reading between the lines a bit, I know you're dealing with more than your own share of issues

. I don't know what I would do without this forum to keep things in perspective. A positive attitude and minimizing stress is soooo important, but sometimes easier said than done.

Hugs and love,
Kari

humbird753 · Post by **humbird753** » Thu Apr 03, 2014 3:27 pm

Kari,

It is good to see you back. If you have posted, I missed it. I am sorry you are having to deal with your thyroid again. Hopefully you will be back on track (or even better) soon.

Paula

Kari · Post by **Kari** » Thu Apr 03, 2014 4:02 pm

Thanks Paula. Yes, you're right, I've been absent for a while, trying to figure out how to get my GI symptoms and fatigue under control. I know you've been dealing with a bad restaurant experience, but glad to see you're on the mend. I admire your diligence in cooking all your meals to help heal; it's just maddening that the one time you decide to eat out, you get sick - grrrrrr.

Love,
Kari

Post by **tex** » Thu Apr 03, 2014 4:04 pm

Kari,

Drink more coffee? Drinking more coffee makes me more alert, but I haven't noticed that it actually gives me more energy. I think that doctor is confusing alertness and hyperactivity with energy.

Energy is a measure of the actually potential ability to do work (in engineering terms), whereas horsepower or kilowatts are a measure of the rate at which work can be done. IOW, coffee increases our horsepower, but not our energy, IMO.

Kari wrote:I assume that since your T3 is OK, your energy level is fine? If that's the case, and you don't have any other symptoms, you probably don't need to worry too much about your T4 and TSH being low???

Those are good questions. My energy is a bit low, but not a major problem. Not all symptoms are completely resolved when Free T4 is low, so some practitioners treat it with an increased supplement until the symptoms are resolved. When that is done, the TSH has to be ignored, because it will go below range, so that's why many doctors are unwilling to do that.

But I have a hunch that you're correct — low Free T4 probably doesn't cause as many problems as low Free T3. It can still cause a tendency toward C, and easy weight gain, but on a somewhat reduced level. Back before the TSH test was invented, when doctors treated by resolution of symptoms, and all thyroid supplements were natural, patients were probably a lot more likely to be able to control all the symptoms of hypothyroidism. Doctors love the TSH test, but it is not our friend, as patients.

Love,
Tex

DebE13 · Post by **DebE13** » Thu Apr 03, 2014 5:10 pm

Kari, I can relate to your frustrations. I am still working out the bugs out with my treatment plan and it's never as fast as I'd like. It's hard to be patient. My endo added T3 and I'm feeling better but not quite better enough to agree I'm good where I'm at. My endo asked me to just keep things where they're at to let my body rest. I'm not sure I agree with him but don't think I had a choice. I've complicated matters because I insisted on finding brands that don't have fillers/dyes that could add to the MC problem. My endo was fine with my request even though they weren't his top choices simply because I did all the legwork and gave him the manufacturer that I wanted. I battle with Walgreens frequently because both the T3and T4 meds are not in stock and have to be special ordered. It's just one more thing to be vigilant about but worth the effort. Good luck in finding what works for you!

LindyLou · Post by **LindyLou** » Thu Apr 03, 2014 5:27 pm

Hi Kari,
A couple of notes...... I switched from levothyroxine to Tirosint last year and I was amazed the effect it had on my bm's. In retrospect, I believe there was a filler in the Levo that I was sensitive to and after around 8 years of being on that drug at best didn't help help my MC and at worse, it made it worse.

There is a hypo allergenic NDT called Westhroid that I have read a lot of good things about. There is also a facebook group called Recovering with T3. There are many people there with the same circumstances (labs) as yours and they take t3 using the circadian method.

Also regarding finding an endo willing to prescribe what you want, I have read that many go to the pharmacy and find out which doctors prescribe certain drugs. No HIPPA problems there as you're talking about doctors not patients.

Pat · Post by **Pat** » Thu Apr 03, 2014 7:02 pm

Kari,

Go to www.stopthethyroidmadness.com and read. Buy the book if you want more info.

Pat