Sensitivity to Synthroid

Hi,

I have had Hashimoto's for years and seem to be having a sudden sensitivity/intolerance to Synthroid.  This developed since my hyperthyroid bout last spring and swing back to hypothyroidism.  Every time I increase my dose, I experience horrible hyper symptoms including sleep difficulties, heart palpitations and tearfulness.  However, the dilemma is that if I don't increase the dose, the hypothyroid symptoms persist.  My TSH is slightly below 3 and the target is 1.  Have other people experienced this?  If so, how have you coped?  Has anyone changed to another T4 and had less difficulty?

Thank you in advance.  I have posted before and have received such wonderful support and information.

[goolarra]

I have always been hypersensitive to meds increases.  What has your meds history been since going hyper, then hypo?  How much did you decrease after going hyper?  Have you, perhaps, increased your dose too rapidly?

Is your doctor testing FT3 and FT4 as well as TSH?  The "frees" are much more important than TSH.  Meds adjustments should be being made on the basis of FT3/4, not TSH.

There is no "one-size-fits-all" TSH.  Many of us have to have TSH suppressed to the lower end of the range (or even below) to feel good, others would be very hyper with a TSH of 1.0.  We are all very individual and have to find the levels at which we each are most comfortable.  TSH is also a very poor indicator of thyroid function since it is a pituitary hormone and affected by many variables other than thyroid function.

The best way to cope with this is to check your FT3/4 levels to see what is actually going on with your thyroid hormones. Another thing to evaluate is whether your increases have been too rapid/large.

[jmidlife]

Hi,

Thanks so much for your very helpful response.  I was comfortably taking 125 mcg of Synthroid for many years for my Hashimoto's prior to the hyperthyroid bout. I had to cut my dose considerably and am now alternating between 75 and 88 mcg after very slowly increasing the dose.  I'm recovering now from an intense hyperthyroid reaction to only a very tiny increase which was horrendous and totally impaired my quality of life.  My endocrinologist only checks the TSH and FT4. I keep thinking about changing to another thyroid medication option or wonder if there could be anything else going on to cause such a reaction.

I appreciate your help.  

[goolarra]

What was your FT4 and its range?

If you're feeling hyper and you've increased very slowly, then your dose is too high, regardless of where your levels are.  Last spring, my endo was trying to "nudge me up" in the range.  I went hyper on an increase from 75 to 81.5, which is the same as your alternation of 75/88.  The whole thing was complicated by the fact that I have a pituitary issue that keeps my TSH high, and I seem to be one of those "odd" people comfortable very low in the range.  What was your dose when you went hyper this time?

[jmidlife]

Thanks so much!!!  Sorry to hear about your struggles. What type of pituitary issue do you have?  Are you taking Levoxyl?  My last Free T4 was .7 with a range of .6 to 1.2.   I had inched up so incredibly slowly from 75 daily to  88 mcg once a week, then twice a week to 88 3x times a week on alternate weeks, etc. I started becoming hyper when I started taking 88 3X every week (with 75 on other days).  I have tried to increase it before but couldn't due to hyperthyroid effects.   I agree.... The levels do not really matter if you're feeling terrible.   It's such a minute difference but it catapulted me into a hyperthyroid state which is unliveable.  I'd rather be hypothyroid!

I appreciate your help.  

[goolarra]

I have "pituitary resistance to thyroid hormone" (PRTH).  Apparently, the pituitary converts T4 to T3 for its own use.  It does this with the help of an enzyme called 5'-deiodinase.  My pituitary is lacking in that enzyme, so its starved for T3 and "thinks" the rest of my body is, too (it's not...I'm in range on all labs, except TSH, and have been asymptomatic for a couple of years now).  However, my TSH always comes in around 20 (no, I did not forget the decimal point!).

Yes, I take 75 mcg Levoxyl.  However, at one time or another, I have been on Synthroid and generic, and I failed to see much difference in any of them.  I had never gone hyper until Levoxyl, but I think that was coincidence since my dose was being raised at that point also.

You certainly did all the right things in terms of increasing slowly.  It makes my progression look relatively fast (and, it wasn't).  I know exactly what you mean...my trip into hyper land last year was not fun, and I agree, I would rather be hypo and just take a nap than hyper.  It's frightening.  I went over the edge on just 6.5 mcg more per day (it took about a week to ten days).  My endo had wanted me to go right to 88 per day, and we had compromised on 81.5...thank goodness.  When you went hyper, did your endo advise you to d/c all meds for a few days before resuming at a lower dose?

So, it seems that the most you ever took was 88 2x per week (75 other days) alternating with 88 3x per week.  When you went to 88 3x per week every week, you went hyper.  When you were at your highest dose before going hyper, did you still have hypo symptoms?  Were you at that dose long enough for it to stabilize (4-6 weeks)?  What dose were you on when your FT4 was 0.7?  Sorry about all the questions, but I think this is really interesting.    

[jmidlife]

Thanks so much for your help and information.  It's so easy to feel alone in the midst of a thyroid storm.  Sorry you've had to struggle with this as well along with your PRTH.

Thank goodness you didn't increase your dose immediately to 88.  I'm still in the midst of this horrendous hyper episode which involves sleep issues, emotional lability, and a rapid heartbeat and I was advised to  lower the dose after another TSH yesterday.   After my initial hyper episode, he wanted to increase my dose to 100 but I decided that I needed to increase it slowly.  I long for hypo symptoms so I could nap and rest!

For many years, I was stabilized on 125 mcg until my thyroid sputtered into hyperthyroidism and then the wild swing back to hypothyroidism.  I have no idea why I've developed this sudden intolerance or seeming toxicity.   Since then, the highest dose I've been on was the 88 3 times a week which triggered the hyperthyroidism.  Early last fall, I tried twice to increase it to the 88, but became hyper.  At 3 times a week, I saw an improvement in that I no longer experienced extreme cold intolerance but then one week later, I became hyper.  My FT4 was done last December  when I started on the third 88 dose per week.

I really appreciate your input and support.

[goolarra]

Your FT4 was 0.7 just before you went hyper.  It's really good that you had the bloodwork and know that since it defines the upper limit of your personal FT4 range.  You must have been just about ready to go over the edge into hyper.  Now, 0.7 is very low in the range, and it's a bit unusual (actually, I don't believe this, but the explanation is fairly complicated), but some of us are comfortable in the lower part of the range (myself included).  Just to quantify...my FT4 is at 12% of range right now, and yours is at 16%, so you're just a bit higher in the range than me, and I'm asymptomatic.  So, it IS possible.

My next question would have to be how long you were alternating 88 3x/88 2x before that 0.7 reading.  Had the dose had the four to six weeks to stabilize in your system?

This is when doctors' reluctance to order FT3 makes me really angry.  I would love to know what your FT3 was doing at the time.  It can be such an important part of the puzzle when the rest is not quite making sense without it.

If your FT4 had had enough time to stabilize, my next question would be if your FT3 (I know you don't know what it was) had had time to "catch up".  My experience is that once FT4 stabilizes, it can take a while longer until the conversion kicks in at full tilt, so FT3 continues to rise with stable FT4. FT3 can lag behind for a while, and therefore symptoms may persist after FT4 stabilizes and even after FT3 does, if the body needs time to heal.

Are you still taking 88 2x/88 3x?  Do you have either hyper or hypo symptoms at the moment?

[jmidlife]

Hi,

Again, thanks so much for your help, support, and time.  I feel as if I'll never feel like my old self again.  This has been the worst year of my life... healthwise.    

At the moment, I'm having hyper symptoms and am waiting for the latest TSH results.  In the interim, I've lowered the dose although I expect the TSH to not reflect the hyper symptoms as it seems that it's not an objective hyperthyroidism but an adverse, hyper-like response to the Synthroid..  I've asked for a a FT3 but was told it wouldn't be useful!!  I can't decide whether to go down to 75 daily after struggling to get up to 88 three times a week or what to do.  This is an unliveable state but then the hypo state wasn't very enjoyable either...

Strangely, the FT4 at .7 was a slight decrease of .1 from before (at .8) and was when I had increased to 3 times a week of 88 after alternating between 2 times a week of 88 and 3 times.   I noticed the hyper symptoms starting after a glaring and sudden shift in my metabolism from extreme cold intolerance to feeling comfortable.  My TSH actually increased last time after I increased my Synthroid.. which is odd.

Again, I appreciate all of your information and support.  

Take care of yourself.

[goolarra]

By "ojective hyperthyroidism" do you mean that your TSH is not below range and your FT4 is not above range?  If so, please understand that it is not necessary for your labs to be out of range for you to be hyper (or hypo).  All that is necessary is for labs to be outside YOUR personal reference range (which is going to be a lot narrower than the population range).  Are they ordering FT4 along with TSH?  FT3 is very useful, and very misunderstood by many, many doctors.  I think you need to see what it's doing.

My TSH doesn't move a lot, but it's as apt to go up when my frees go up or I increase my dose as it is to behave properly.

Hopefully, your latest labwork will give you a better idea of how to adjust meds when it comes in.  With hyper symptoms present, I think a slight decrease is in order.  If you went back to 88 2x, do you think you'd start feeling hypo?

[jmidlife]

Hi,

Update:  I just got my TSH back prior to lowering my dose (which included stopping for two days).  My TSH is now 2.98, on the cusp of the upper limit of normal.  Strangely, the TSH has been increasing despite my increase in Synthroid.  This hyperthyroid bout has been intolerable in view of the heart palpitations, emotional lability, and insomnia.  My endocrinologist recommended that I try a low dose of the Beta Blocker: Propranalol.  
The only test that was done was a TSH.

This may be a worthwhile short term strategy to manage the hyper symptoms but I still don't feel as if this is a workable long term solution given my intolerance/sensitivity to Synthroid.

Thanks again for all of your support and help.  Hope you're doing well.

[goolarra]

I take a beta blocker, atenolol.  It does help with the palpitations (tachycardia, in my case).  I hate the idea of taking one thing to counter the side effects of the other, but I have a congenital heart defect that makes me prone to tachycardia, so I had no choice. The levo just wrought havoc with my tachy.

If I were you, I would really insist that your doctor order FT3 and FT4 (again).  If you increase your Synthroid, and your TSH goes up, something else is going on.  TSH is such a poor diagnostic since it can be affected by so many things, even the time of day the blood was drawn.    

You might try switching to a different brand T4.  Sometimes the fillers in one or the other give people problems (the hormone is the same).  I doubt this would help since you were on Synthroid for so long before your symptoms developed.  

Are you menopausal?  Peri-menopausal?

[jmidlife]

Hi,

Thanks again for your support.  You have been extraordinarily helpful in the midst of this thyroid storm.

I totally understand.  I also don't like the idea of taking one drug to counteract the adverse effects of another.  I just started the Propranalol at the lowest possible dose.  I'm sure it's too early to see any true effects as I'm still feeling hyper.  Unfortunately, it takes such a long time to adapt to the lower dose of Synthroid.  What is particularly strange is that the hyper effects are exacerbated by intense exercise.

I've been post-menopausal for years.

Take care.

[goolarra]

I started atenolol at the lowest dose, too, but as I raised my levo dose, I had to go up a step in the BB, too.  It takes a few days for the BBs to kick in, but it really happens pretty quickly (or it just seems that way to us hypos who are used to spending six weeks waiting for meds to kick in...it'a ll relative!).

It makes logical sense to me that the hyper symptoms would be exacerbated by intense exercise.  Your HR and BP are probably a bit higher than usual, so when you add the demands of strenuous exercise to that, everything is going to be a bit worse.  You might go a bit easy on yourself until things get closer to normal???  Your whole body is under more stress at the moment than it's used to. You don't want to push too hard.

Keep us posted on how it's going...

[jmidlife]

Hi,

I can't thank you enough for being there. The worst symptom for me right now re: hyperthyroidism is the emotional lability.  It's horrendous!  Have you experienced this and, if so, did the Beta Blocker help?

Hope you're doing well.

[goolarra]

No, I haven't experienced the emotional lability with thyroid.  I went through that for entirely different reasons when I was quite young and think I "taught" myself how to avoid it.  We are sometimes our own worst enemies...I know I am, and I see it in my husband though I am powerless to convince him of that!.  I still have to fight at times to keep it at bay, but I do most of the time, and when I don't, it's short-lived.  No, the BBs are going to help with the heart issues...they basically block the adrenalin receptors in the heart, calming things down there.  And if your heart feels better, so do you!  BBs won't do a lot for the other symptoms of hyper.  Have you considered skipping a day or two of thyroid meds to get back to un-hyper levels?  You might ask your doctor about that...When I was overmedicated, my symptoms were increased HR, elevated BP, angina, "antsiness" (man, did my house get clean!), insomnia, heat intolerance (never before).  We all react differently, and as I said, I have lots of experience with emotional instability, so kind of have that under control.  Not feeling well upsets your emotional state...anything that makes you feel better helps that.  Hang in there...there is light at the end of the tunnel.

[jmidlife]

Hi,

Thanks again for the support.  Often it feels as if I'll never feel like my old self again.  I've been struggling with this lack of well-being for about a year now.

I did stop taking the Synthroid for two days last week and dropped down to 75 mcg. as  I couldn't tolerate anything more.  I hated to give up the 88 three times a week(I had worked so hard to get there!)  and couldn't even go down to 2 times as the symptoms have been intolerable. (The sudden, unexplained tearfulness for no reason  has been the worst and feels as if I've lost my sense of emotional control.)   But it also feels as if I'm backsliding.  This is what I had to do last spring to cope with the first hyperthyroid bout and then I've been crawling my way back up re: dosage.  

I have just been reading about the overtimulation of the thyroid gland due to an excessive dose and these hyperthyroid-like symptoms are all listed.   I also have had the hyperactivity/cleaning, "antsiness,"  inability to sit/relax/read, insomnia, and heat intolerance symptoms.  In fact, the oddest thing is that I experienced severe cold intolerance for a while (which is new for me) and then a week later I was no longer freezing all the time! That's when the hyperthyroid symptoms started.

Again, thanks so much for all of your help.

[goolarra]

Have you had an ultrasound to see if you might have a misbehaving nodule?  Also, with your low FT4, it would really help to see what your FT3 is doing. Can you have bloodwork repeated with FT3, FT4 and TSH all on the same blood draw?  It would be interesting to see what all that's doing while you're feeling hyper.

I understand your frustration with not feeling well for so long.  My PCP (who I had to go to with my husband's diagnosis - he's a cabinetmaker!) started me on 88 mcg.  Now, if you are over 50 or have been hypo for more than a few months or have a heart arrythmia, the recommended starting dose is 12.5 to 25 mcg.  I was all three, so just imagine what 88 did to me.  Within two weeks, my tachy had gone wild.  So, on PCPs advice I backed down to 44.  Two more weeks, and tachy again.  Back down to 25.  I couldn't even tolerate that.  So, I saw an electrophysiologist (cardio specializing in arrythmias) and got on the BB.  My PCP had mucked up the thyroid so much that there was no way I was trusting her with my heart!

The BB made the 25 mcg tolerable.  So, then I started increasing...very, very slowly.  It was excrutiating.  My labs weren't improving; I felt like I was "poisoning" myself every morning when I swallowed that little pill.  PCP just kept say "need more thyroid" (that's a literal quote).  I had no hypo symptoms, and I was just dumping more levo into my body to make the numbers better, and the more I took, the less well the BB controlled the tachy.  This went on for just about a year.  I finally found this site and started educating myself and realized it was time for a new doctor.

I found my endo a year ago last December.  I went to him symptom-free, but with FT3/4 still on the floor of their ranges.  He wanted to "nudge my numbers up".  I was at 68.5 mcg per day at that point.  I didn't think my numbers needed nudging, but our relationship was pretty new and I was paying him the big bucks for his experienced opinion, so I went along.  He switched me from generic to Levoxyl, then increased me to 75 after six weeks.  So far, so good.  Labs were still abysmal.  That's when he wanted to increase me to 88 in one swell foop, and I refused, but agreed to 81.5.  That's when I went hyper, and that's when he decided something else did have to be going on and I got the PRTH diagnosis.  I was finished increasing.  Interestingly enough, I am still taking 75...never have gotten to the 88 I was started on.

Long story, and I don't usually like to go on so about my own saga.  It's kind of a long way of saying "trust your instincts".  I knew what I was doing wasn't right, but I kept having the "bad patient" guilt.  In my mind, I thought I HAD to get back up to the 88 mcg originally prescribed and that my labs HAD to be the perfect FT4 midrange and FT3 upper third. It just doesn't work the same for all of us.

Anyway, I do understand what you're going through.  How would you feel about switching brands?  It may not do a lot, but it won't upset the apple cart too much, either.  If it helped, it certainly would be an easy fix, if not, no harm, no foul.  

[jmidlife]

Hi,

Thanks so much for your support and for sharing your story. Sorry that you've had to struggle with all of this and for so long.  What an ordeal.  Yes.  I know exactly what you mean re: poisoning your body.  I feel the same way as if I'm ingesting a daily toxin!  I totally agree that there are numbers and then there is the issue re: how one feels in his or her body.  But I also struggle with the "bad patient" issue since I've actually gone down more than one dosage notch.  There was no other way.   However, I would welcome a period of hypothyroidism so I can get some needed rest/sleep.

I've asked for a FT3 and other options/tests  Unfortunately, my endocrinologist doesn't think it would be helpful or doesn't think that changing brands help.  I'd like to have one done and  I'm open to any other options that make sense!!

I also read on the Internet that there are people who people who are hypersensitive to Synthroid and should not take it.

Take care of yourself and thanks again.

[goolarra]

You can get on the internet and order you own FT3, FT4 and TSH, without a doctor.  Some of the sites have you stick you finger and send the sample in to them, others order the tests from your local lab.  They draw your blood, and the results go directly to you.

Some people are sensitive to the different T4 meds.  Some need to add some Cytomel (T3) to get the right FT3/FT4 balance in their bodies.  Others only do well on dessicated porcine thyroid, which has both T3 and T4 along with other thyroid hormones of less importance and trace minerals, etc.  

Considering how stubborn your doctor is (he doesn't even want to try a different brand...is he working for Abbott Labs?!), it's probably going to mean finding a new doctor.  I don't think a lot of any doctor who doesn't order FT3, even less of one who refuses to order it on patient request, and even less of one who ignores a patient's symptoms and refuses to try anything different.  Repeating the same thing over and over again, expecting a different outcome, is a sign of insanity...lol.

Check out the tests available online...

[jmidlife]

Thank you!! Thank you!!!  I totally agree...  You're so wonderfully knowledgeable, articulate,  and proactive!!   I really appreciate your support and input. That's the way I've been feeling.  My endocrinologist thinks that adding a T3 would be problematic given that it suppresses the TSH and could contribute to further hyperthyroid symptoms.   I know that this hypo/hyper yo-yo ing is intolerable. I see a new internist next week.  

Take care!

[goolarra]

I'm so glad you're seeing a new doctor...Don't let him get away without ordering FT3!  Let us know how you make out and best of luck!

[jmidlife]

Hi,

Thanks!

Do you know if taking a Synthroid dose close to the time of the blood draw i.e. FT3, FT4, and/or TSH interferes with the results?

Take care.

[goolarra]

Is there ever a straightorward answer to ANY question around here?!

Another controversial area...some doctors say take your T4 meds before having blood drawn, others say not until afterwards.  I feel the important thing is consistency...either always take it or never and have blood drawn at approximately the same time every time, no matter what time that is.  The best thing to do is ask the doctor ordering the tests so that he gets results the way he's used to seeing them....we don't want to confuse him after all, do we?  Meds with T3 in them are a different story...you want blood drawn before taking those.

My thought is that you are measuring a medicated level once you are on meds, so why skip a dose?  Isn't that slanting the results?

[jmidlife]

Thanks!  I've always been confused by this.... One endocrinologist years ago told me that I shouldn't have a blood test within six hours of taking my Synthroid.  Others have not said anything.  Do you think that the skipped dose the morning of the most recent TSH could have impacted the level?  I wouldn't think so given how long it takes for a TSH to shift.

[goolarra]

TSH is volatile throughout the day, which is one reason to have blood drawn at the same time of day.  I've just been doing some reading that suggests it might be partially based on a circadian rhythm.  You skipped the dose the morning of your last TSH test?  So, I assume you usually take it before your lab work?  It could have had some effect.  TSH is SO unreliable.  I hate to even speculate about it without FT3 and FT4 to back it up.

[jmidlife]

Thanks so much.  Actually, I normally get my lab work in the morning and take the  Synthroid afterwards.  I didn't even think it was an option to take it this time as I was so hyper. I had no choice but to not ingest the "poison" for that morning.  I"m still puzzled as to why my  TSH has been increasing of late despite the increases but the volatility of the TSH could be part of it.

[goolarra]

That's why we're all so adamant about only looking at TSH in the context of FT3 and FT4 and throwing out TSH when it isn't supported by the other two or symptoms.

[jmidlife]

Hi,

I went to see the new internist today.  On a positive note, I will finally be getting an FT3 (and FT4) tomorrow along with a new TSH (as well as a full panel).   She is also talking to my endocrinologist.  However, since she hadn't seen the overmedication/hyper response re: Synthroid in her clinical work, she wasn't convinced that it was the cause!   I'm continuing to have the hyper symptoms although the BB has somewhat diminished.  It's been about two weeks since I decreased the dose to 75 mcg.  

Thanks so much for your support.  This is such a long haul.  Hope you're doing well.

[goolarra]

Well, THAT wasn't difficult at all!  Finally, all the basics...

She's never seen anyone who was overmedicated and had hyper symptoms??? Oh, my...

I'll be interested to see your results.  Sorry to hear you're still having the hyper symptoms.  I'm sure your tests will shed some light on what's going on.

My thyroid's behaving, wish I could say the same for my back.  I guess I'm at the "if it ain't one thing..." age.  Such fun getting old!

[jmidlife]

Thanks so much for your support.  Sorry to hear about your back... but glad your thyroid is on good behavior!

Yes... Bette Davis was right re: aging not being for sissies!

I'll keep you posted.  I really appreciate your help as it's so easy to feel alone.  

Take care.

[jmidlife]

Hi,

Still eagerly waiting for the results of the TSH, FT3, and F4 along with other tests. However, today I had a scary experience.  I suddenly felt weary, tired, with lowered blood pressure and lung capacity.   I had a similar experience during a walk yesterday. This is so out of character for me that it was frightening.  My best guess is that it was due to the BB (I'm taking 30 mg of Propranalol three times a day).  Have you had any experiences re: your BB?  Even though it has eased the tachycardia due to the hyper/overmedicated response to Synthroid, I'm thinking of reducing the dose.  

Hope you're doing well.  Thanks for your help... as always.

[goolarra]

The BB could definitely do that.  When I was first on it, I experienced a sort of "lag" in what felt like my body "getting into gear" when I'd get up from sitting or suddenly increase my activity level.  This went away (or I got used to it) fairly quickly, and I haven't experienced it lately.  However, I only take 50 mg of atenolol once a day...don't know if atenolol and propranalol dosing is equivalent.  Back when I first started the BB, I was on 25 mg, then as levo increased, BB went to 37.5 and then 50.  Your symptoms do sound like BB symptoms.  You might achieve the same reduction of hyper symptoms on a lower dose without the BB side effects.  Don't be too drastic...maybe try 2 1/2???

[jmidlife]

Hi,

Thanks so much.   I'm so appreciative of your help and support. That's exactly how I've been feeling.  I understand that you have to be very careful about weaning off of BBs rather than stopping suddenly.  (Oops... I made a mistake.. I'm only taking 10 mg 3 times a day...so it's a very low dose.)

Hope you're doing well and your back is better.

[goolarra]

Yes, you do have to be careful with weaning off.  And you are on a very low dose...similar to my 25 mg initial dose.  I think cutting half a pill is pretty slow weaning, but you could try just cutting a quarter if you're concerned about it.  The effects of BBs don't build, so, if you cut a quarter and the side effects are still present after a few days or so, cut the other quarter.  I'm always pretty conservative on changes...

[jmidlife]

Hi,

Hope you're doing well. I just received my lab results.

TSH - 4.16 (and was 2.98 on 2/17 - the day I lowered my dose to 75 mcgs. from 75 4 X a week to 88 3X a week)
FT4 - 1.02 (range is .58 - 1.64)
FT3 - 2.51 ( range is 2.50 - 3.90)

My cortisol is 12 (range is 6-23)

I'm continuing to feel terrible and still having the hyper response i.e. sleep issues and emotionality to the last increase although the palpitations have been reasonably controlled by the Propranalol.  I'm at a loss, however, now that my TSH is creeping up into the hypo range.  It's a dreadful dilemma. I can't increase the dose given my pattern of severe hyper/thyrotoxic symptoms and yet I'm hypo without the increase.

My internist wants me to rule out the possibility of an adrenal tumor i.e. pheochromocytoma.

Thanks again for all of your support.  You've been extraordinarily helpful.

[goolarra]

Wow, I wouldn't just jump to that god-awful seven-syllable adrenal tumor right off the bat!  FT4 is at 42%, not too bad with mid-range the "target".  Your FT3 is just WAY too low...it's on the floor of the range.  I think you are a slow converter...you need some T3 meds added to your T4 (with a corresponding decrease in the T4).  I know you've been reluctant to try that, but just a LITTLE might help you feel so much better.  Your FT4 compared to FT3 is kind of upside-down.  Goal for FT4 is midrange and FT3 is upper half to third.  Your FT3 is low, but FT4 not too bad.  I think it would be worth the try to see what some Cytomel does for you.  The balance between FT3 and FT4 is what's so important.  Has your doctor suggested that at all?  What's he basing the adrenal tumor on?

[jmidlife]

Thanks so much for your support and input.  Yes... the thought of a tumor is pretty scary.  I have some of the symptoms of phenochromocytoma so they both want to rule it out.  I really don't think that is what's causing this.  

The concern about adding Cytomel is that it suppresses the T3 and can cause more hyper-like symptoms which would be worrisome given my experience.  I don't really believe that my physicians accept the notion of overmedication/hyper response to increases in Synthroid!  This is incredibly frustrating and exhausting.

I have lowered the Propranalol and the tachycardia seems to be manageable on a reduced dose.

Thanks so much!

[goolarra]

You have been nagging at the back of my mind ever since I saw your FT3 level!  Oh, well, I always need fodder for midnight ruminations when I can't sleep...keeps my mind off my own problems, which I try to avoid at 2 am!

So, I came up with a theory...you're probably going to think that I'm whacked, but just consider this.

You have said over and over that your symptoms are hypER when you try to increase(and I believed you!).  In fact, insomnia, palpitations and emotional lability can all be symptoms of both hypo and hyper...they're some of those symptoms that you really can't rely on to be exclusively one or the other.  Add to this, your recent experience with low BP, which is almost exclusively a hypo symptom (perhaps it wasn't the BB that did it).  So, let's assume for a moment that they are actually hypo symptoms.  And, let's assume that a year ago when these symptoms started, you had recently developed a conversion issue (either slow conversion or RT3 dominance).

I can't remember if we've talked about RT3 dominance or not (I read this whole thread over again last night, but still have to plead brain fog!).  If I'm redundant, please forgive me.

The liver (mostly) converts T4 to T3 and RT3.  RT3 is a mirror image of T3 and can "dock" upside-down at T3 receptors in cells, blocking T3.  In turn, the higher levels of RT3 building in cells, actually tricks the liver into producing MORE RT3, not less, and the whole thing starts to snowball.  Increasing T4 meds when this is going on actually makes the whole situation worse, increasing the RT3 and decreasing the T3.

This could explain why you have symptoms every time you try to increase...they're actually hypo symptoms that come from RT3 buildup and consequent T3 decrease.  You back off a bit on meds, the situation gets turned around just enough to get the RT3/T3 balance back in line just a bit, and you feel better for a while, but then it all starts happening again.

The treatment for RT3 dominance is to discontinue all T4 meds and temporarily take T3-only.  This, in effect, shuts down the conversion process and gives the RT3 time to clear out of the body.  Once that happens and the FT3/RT3 balance is restored, T4 meds can be reintroduced.

I feel certain that it's your FT3 level that's causing your symptoms.  It's obvious that it's not too high...it's so close to the bottom limit of the range.  

Do you think your doctor would order RT3?  Some doctors don't "believe in" RT3 dominance.  If you do, have FT3 tested on the same blood draw, since it's the ratio of FT3 to RT3 that's important, not the raw numbers.

What do you think?

[jmidlife]

Did you get my response?  It was there yesterday but looks like it disappeared!!!

Thanks!

[goolarra]

No, it must have gotten blown away!  You'll have to redo it...I HATE that!

[jmidlife]

Hi,

Darn....I'll try to reconstruct it.   Thanks so much for your extremely thoughtful and very interesting response ...and for caring.  I really appreciate your help.  I wish my doctors were as attentive as you have been!     Definitely something to think about and yes... those symptoms could easily be either hypo or hyper. Excellent point. I also have been concerned about my FT3 which is barely on the cusp of normal.  Unfortunately, I don't think that either physician would be willing to do a Reverse T3.  My endo wouldn't even do an FT3!

Hope you're doing well.

[hope4thegoodstuff]

I was on synthroid 100 mcg for a whole year and had no adverse effects...I didn't really even know I was on anything.  Didn't really feel any different.  One day I got a new refill and wam!!!! It nailed me...within 30 minutes of taking that pill and nothing else I was in hyper hell like none other...took about 6 hours to wear off.  Called the dr and he basically said "you've been on it a year, it must be something else....don't stop taking it."  So I took it the next morning and it did again. When I ate nothing and had taken nothing else It's kind of hard not to blame the synthroid.  So he reduced me to 50 mcg.  It took three days and it happened again.  Reduced to 25 mcg.  It took a week and it nailed me again...so we'll do testing again.  TSH only.  I have to be on the synthroid.  I went around with that dr for 6 months.  Went for another opinion.  EXACT same diagnosis.  I stopped taking the medicine.  I stopped going to the dr's.  In going for a major UTI I met a third dr and he looked at my records and asked about my thyroid.  I totally went off on this man.  I wasn't there to talk to him about that.  Dr's are just trying to get my money, thyroid stuff was all a scam...I was really on a roll and he just let me.  He looked at my chart for about 30 seconds and asked if anyone had ever mentioned Hashimoto's.  we retested and I had a nasty little (or not so little) nodule.  My case got a bit more complicated from there.  But my synthroid problem ended up being the fact that the nodule would produce hormone (I call them horror mones) and then I'd take the synthroid and that was what was causing the Hyper bouts.  

I have no idea if this is what could be happening with you, but I saw that someone above mentioned a possible nodule.  You may have that checked out.  

[goolarra]

You might have to start shopping for a more enlightened doctor.  I "interviewed" endos via fax before "choosing" mine.  I'm in a very small market...only one answered (which is telling in itself), and I just happened to get lucky.  I just don't think you're going to feel well until you try something different.

Hope, it sounds like you had a toxic nodule, sometimes called a hyperfunctioning nodule or toxic adenoma.  Usually, that's characterized by high FT3.  The nodule produces T3 independent of the influence of TSH...it just keeps pumping out T3.  It's almost like a little mini-thyroid within your thyroid, gone whacky (to use a technical term!).  It's a possibility as toxic nodules can cause erratic swings in labs...one day hypo, one hyper.  Unfortunately, jmidlife has only one FT3 reading, so we don't know if it's swinging or just permanently low.

jmidlife, have you had an ultrasound recently?  I'm still favoring the RT3/low FT3 connection, but it couldn't hurt.

[jmidlife]

Sorry, Hope, that you've had to go through this.  "Hyper hell" is horrendous... I'll take "hypo hell" any day.

Thanks so much for your support and help. Unfortunately, I've never had an ultrasound.   My endocrinologist has only tested for T4, TSH, and antibodies.  I agree that I can't continue like this and need to find one who is accepting of other explanations and not just into the thyroid numbers game. I've considered decreasing the Synthroid further but I'm fearful that I'll become even more hypo given that my TSH is already over 4.

Take care.

[goolarra]

Yes, I think it's coming down to that.  More important than your TSH being over 4, is that your FT3 is in the toilet, just waiting to be flushed!  Aaaah, the visuals!

Are you in a good sized medical market?  A number of endos to choose from?  You can interview them over the phone (probably through a nurse) or fax or email to get an indication of their philosophy.  Well worth the trouble...  I don't think that endos are always the be-all and end-all as far as thyroid problems go, but I do think that you need someone with more than basic knowledge.

I think the best approach is to have RT3 testing...it could save you time in the long run.  However, another approach would be to just try adding some Cytomel to your Synthroid.  If your problem is simply slow conversion, it should make you feel a lot better.  If it's more complicated than that, you won't be wasting too much time since T3 meds don't need time to build up in your system like T4 meds, but work pretty fast (although there is still a healing process that has to go on).  Any chance that either your endo or your internist would prescribe a trial dose of Cytomel?  You are now armed with FT3 results that should convince any idiot that your T3 needs supplementation.  Any way to work with either of them?  At least you'll be moving in the right direction...

[hope4thegoodstuff]

Good luck..I know it will work out eventually, but sometimes this takes time and trial.  I went to 3 drs and two of the three just panicked when I ask about fee t3 and free t4.  OMG..those poor people.  LOL.  Now I have two dr's that will check the free t4, but I have yet to find one that will go for a free t3.  I don't know as that has ever been tested and I would have love to have known from the beginning what it was.

[jmidlife]

Thanks again for your support and help.  I made an appointment with a new endocrinologist but couldn't get in for several months.  A referral from my PCP was required but I convinced them to let me do so anyway since I knew my diagnosis and had all of the paperwork.  In the interim, and this is something I've never done before, I found a naturopath who specializes in the thyroid (!!  - imagine someone being interested in the thyroid:-)) so am considering that route although my insurance, unfortunately, won't cover it.  I mentioned the addition of Cytomel to my internist who immediately rejected the idea.  

[hope4thegoodstuff]

That sounds quite interesting...I don't know as I have a naturopath in the area...wish I did...

[goolarra]

I just do not understand these doctors that act like Cytomel is witchdoctoring.  Wake up guys, this is not something new and untested.  Even my PCP, who didn't know much about thyroid, was willing to prescribe it for me...she shouldn't have, but she did (another story).

An NP?  I don't know...I find that a bit scary.  Coincidentally, I was just reading a newspaper article saying that our governor here just extended the prescription-writing authority of NPs, but it was not specific about what they can and cannot prescribe.  Apparently, it must vary by state.  I'd certainly want to know what prescription thyroid meds they have at their disposal before going that route.  As far as I know, there is no OTC thyroid med that is effective and safe.  Although I'm sure their treatments can be effective in the case of some thyroid "dysfunction", I'm not sure that would be the best place to go with full-blown thyroid "disease".

I don't know.  We have a thyroid "center" here run by a chiropractic.  I've recently signed up for his "newletter" (idle curiosity) and been just deluged by email "ads".  I think it's the same kind of deal you describe...don't take insurance.  I have a feeling the whole thing must be pretty pricey...

Have you asked to be put on a cancellation list?

[jmidlife]

Hi,

Thanks, as always,  for your input.  I really appreciate your help. I have a question: Just returned to the original hospital lab for consistency purposes and even though I've reduced my dose to 75 mcgs over the past six weeks, my TSH has gone down from 2.98 to 2.19!  This is very odd.  At the same time, when I had it done at my internist's lab it was slightly over 4 merely three weeks ago!.  This doesn't make any sense.  I'm still having the hyper-like symptoms and it feels as if I'm taking a daily toxin!  I continue to believe that my very low normal FT3 is the key.

[goolarra]

I can't tell you how much I think you need to stop concentrating on TSH and start looking at FT3 and FT4 levels.  That kind of variation in TSH is not at all unusual...TSH is very volatile, even intraday.  What's your FT3/4 now?

I think (know) you're right about the FT3 level, which may be exacerbated by RT3 dominance.

It's interesting.  There's a member on this forum who described taking levo in exactly the same way you do...ingesting a daily toxin (and I've felt that way, too).  She got to the point where no T4 meds (she had tried everything) were working for her anymore.  She had tried dessicated...no luck.  Her endo put her on straight Cytomel.  She felt great.  There was never a mention of RT3 dominance, but straight T3 is the treatment for that, and perhaps the endo just tried it because he had no alternative.  I have to get back to her because last I knew, her endo had started her back on T4 meds, and I don't know the outcome.

[jmidlife]

Thanks so much for your input.  I totally agree.  I'm so frustrated with my endocrinologist.  Actually, I want to scream.  He is saying that since my TSH is not terribly problematic i.e. 2.19 that my on-going symptoms could not be thyroid-related!!!!  The last Free T3 (which he doesn't believe is usefu!!!) was barely on the cusp of normal  2.51 - (lab range 2.50-3.90).  Fortunately, my internist believes in it and I see her again next week.

[goolarra]

Well, I hope your internist will test and treat on FT3/4.  Your endo sounds like a wiener.  How can he look at that FT3 and say it's not thyroid related...I share your frustration.  Let us know what your internist has to say.

[jmidlife]

Thanks so much for responding to my cyberscream!!  I appreciate it. I'll keep you posted.

[jmidlife]

Hi,

Hope you're doing well.  I just wrote a message but it disappeared!  

Update:  I'm still feeling horrible with hyper-like symptoms.  However, I went to the naturopathic physician yesterday who specializes in the thyroid.  I was very impressed.  He's the first person I've met with who is willing to grapple with my complex medical scenario and work on solutions.  I return tomorrow for more lab work including a Reverse T3.  When he was looking through my pile of lab results and saw my low normal FT3, he said:  Finally, a Free T3! Then I'll see him again.

Thanks so much for your support!

[goolarra]

Well, he must have a good grasp of thyroid if he not only wanted to see the FT3, but was apparently surprised that somone had actually ordered it.  I'm so glad you're getting all the labwork you need and have someone you feel comfortable working with...that's a good percentage of the solution.  Keep me posted.  I'm really interested to see what your tests have to say and how he's planning to treat you.  Sorry to hear you're not feeling any better...does it help just a little that you're making some progress?  

[jmidlife]

Hi,

Thanks for your response and support.  Actually, it does help to finally find someone who is willing to have the necessary tests done and not tell me to merely tweak the  Synthroid and return in four months! I just had the blood tests done today and I'll keep you posted.  He's also checking my adrenals as well.

Hope you're doing well.

[jmidlife]

Hi,

Update:  Saw my new naturopath and got my latest lab results back.  My latest Free T3 was barely normal at 2.51 (2.50-3.90) and my Reverse T3 was 264 (range is 90-350).  He recommended that I take a compounded, T4 and T3 (slow release).  I'm worried about switching from Synthroid but since it's been a "toxin" and I've continued to have the hyper-like symptoms, I think it's worth a try.  My ultrasound turned out to be normal except for mild atrophy consistent with Hashimoto's.

I'll keep you posted.  Again, thanks for your incredible support during this ongoing medical crisis.

[goolarra]

So, RT3 dominance it is.  Your FT3/RT3 ratio is 0.95, and the reference range for the ratio is roughly 1.0-2.0, with the higher end of the range preferred.  Usually, the treatment for RT3 dominance is straight Cytomel, no T4 meds at all.  The idea is to "shut down" conversion as much as possible.  The liver (mostly) converts T4 into both T3 and RT3.  When there's no conversion, there's no RT3 being produced.  Slowly, the RT3 that has built up in cells and is blocking T3 will start to be eliminated from the body.  Once RT3 is again at a proper level, T4 meds can be resumed, either alone or in combination with T3 meds.  Although I'm sure this is an individual thing, I've seen six weeks to two months as an estimate of the time it takes for this to happen.

Did adrenals, etc. all check out okay?

I'll be interested to see how this goes for you...hoping it does the trick.  God to hear from you.

[jmidlife]

Hi,

Thanks so much.  He didn't repeat the FT3 since it had been done at another lab a few weeks ago. So they weren't done at the same time.   Is that Reverse T3 considered high (264 - range is: 90-350) even though it's in the normal range?  He also did a four time, saliva test for the adrenals.  I am waiting for those results. The morning blood cortisol level was 12: normal range for the lab is: 6-23.  Also, he tested for pregnenolone which was on the low side (54 - range: 15-132.).  

I appreciate your help and hope you're doing well.

[goolarra]

What's important as far as RT3 dominance is concerned is not the raw numbers, but the ratio of FT3 to RT3.  Since your FT3 is so low, your RT3 should be also (both in the bottom of their respective ranges).  Likewise, if your FT3 is high in the range, your RT3 can be also.  The formula is FT3/RT3 * 100 ( the "100" is a fudge factor to correct for the different units the two are usually reported in).  So, even though your RT3 is "in range", it's still too high compared to your FT3.  Your FT3 is on the floor (0% of range), but your RT3 is at 67% of range...big imbalance there.

If your adrenals are out-of-whack (technical term!), it's really important to get them into line before tackling the RT3 dominance since adrenal insufficiency will most likely derail any attempts to fix the RT3 problem.

[Galsal59]

this was just a greatly informative topic!

[jmidlife]

Hi,

Still waiting for the results of my adrenal test.  But I took my first  slow release T3, T4  pill this morning with great trepidation.  I had to remind myself that I've been viewing my Synthroid as a toxin so I have nothing to lose. Even though the T3 acts quickly, I don't know how long it will take to see if it will benefit me re: alleviating my symptoms.  

Thanks again for all of your superb information and support.  Hope you're doing well.

[goolarra]

Adding T3 should help with your symptoms quickly...well, more quickly than T4 meds, which have to have time to build to appropriate levels in your system.  I'm anxious to see how you do on the SR T3.  Keep me posted.

[LazyMoose]

"But I took my first  slow release T3, T4  pill this morning with great trepidation."

- this was a compounded capsule of slow release, correct?

[jmidlife]

Thanks so much, as always, for your help and support.  I'll keep you posted.  It does mean that I still have the residual amount of Synthroid in my system given its long half life but it would have been too risky to totally stop meds.

[jmidlife]

Yes... it's a compounded, combination T3, T4 capsule that is slow release.

[jmidlife]

I just received my salivary cortisol test results and it was elevated.  Morning: 30 (Normal range is: 13-24), Midday (18 - range is 5-10), afternoon, 8 (range is:3-8), evening 6 ( range is 1-4) Cortisol Burden: 62 (normal range: 23-42)  (I had my morning blood cortisol level done a few weeks ago and it was normal).  Do you know how to interpret these results?

Thanks so much!  I appreciate your help.  

[goolarra]

I don't know a lot about adrenals...I figure some bridges are best left until you absolutely have to cross them!  However, I can see that all your results are above or at top of range, indicating that your adrenals are "taking up the slack" for your thyroid hormones.  Also, I've gleaned that if your adrenals are off, it can be almost impossible to get your thyroid hormones right until they are addressed.  You might try posting a new thread...I know there are other members who know a lot more about adrenals than I do.

I can't remember if I've ever sent you this link on RT3 dominance...it's got some interesting reading in it:

custommedicine.com.au/ http://www blog/2007/04/17/reverse-t3-dominance/

How are you feeling on the compounded?  Does it feel any less toxic?

[jmidlife]

As always, thanks so much for your help and for the link. I started the new medication on Saturday and had one great day (Sunday) which was symptom-free (like my old self!) on the compounded but alas the symptoms (particularly sleep difficulties) returned over the past two nights.  It was discouraging. I just left a message with my doctor to see if the dose needs to be tweaked.  Given the long half life of Synthroid, I will continue to have it in my system for a while.   This is such a long haul.  It's exhausting.

[goolarra]

It is tiring...just what we all need when we're hypo...but just think how virtuously patient you'll be when this is all over!

I'm not all that familiar with SR T3, but I wonder how long the "slow" release extends for.  Is it 12 hours, 16? 24?  I can see that if it were much longer than 12, it might interfere with sleep since most people taking T3 don't like to take their last dose too much after midafternoon to avoid insomnia.  Most of the Synthroid will be out of your system in about four weeks...perhaps a little longer, so, there's nothing you can do but wait.

You might as your pharmacist about the timing of the SR.

[jmidlife]

Thanks!  Great question... I called the pharmacist and the slow release is over 24 hours.
This has been quite an educational experience... one I could have lived without!!  Take care.
.

[jmidlife]

update:  I saw the naturopath yesterday and since I was having some activitation/sleep issues, I have reduced my T3 and T4 to see how I do on the lower dose.  In three weeks, I'll have a repeat Free T3/Free T4 and then a TSH in six weeks and we can tweak it again, if necessary.  Even if I wind up being hypo for a while, I'd welcome it!   It's a pleasure to work with someone who acknowledges the importance of the FT3 and FT4.  It's been such a long, slow (and traumatic) process.  Again, thanks for all of your help.  I'll keep you posted.

[goolarra]

It is sooo much better to work with a doctor who is knowledgable.  I was basically treating myself with my PCP.  I lucked out and got a really great endo...trust me, I'm not easy to please in that respect!  It will be interesting to see how your labs look...are they testing RT3 again also?  Couldn't hurt...

[jmidlife]

Thanks!  Good point about the RT3. The next round in three weeks after I switch the medication looks like it'll be a FT3 and FT4.  And then another round three weeks after that.  Maybe it's being repeated down the road. I'm so glad that you found a great endo.  That is so difficult to find!  I can't believe how exhausting/draining this since I'm still symptomatic.  I'm hoping that this T3, T4 regimen will work!!  

I'll keep you posted.  Again, thanks so much for all of your help and support.

[jmidlife]

Thought I'd give you an update.  As of tomorrow, I'm returning to Synthroid. I tried the combination slow-release, compounded T4/T3 for two weeks, first at one dose (which included only 5 mcg. of T3) and then at 2.5. The activation has been intolerable...what a terrible weekend I just had!!  As a result, we decided that it was not a viable plan and I'm back to Synthroid. Alas... I had such high hopes for this option.  I also have an appointment with a new endocrinologist in three weeks.

Hope you're doing well.

[goolarra]

Did your doctor ever talk about the RT3 dominance at all?  Many doctors don't "believe in" RT3 dominance, but since he tested for it, I'd have thought he'd address it.  Did anything come of any of the other testing that was done?  Especially adrenals?

I'm so sorry to hear that it didn't work out for you...you had such hopes for both the treatment and the new doctor.  Did you get a recommendation on the new endo or pre-interview him on the phone at all to make sure he's a good thyroid endo?  Some of them, especially I think, in large medical market areas, tend to want to deal with diabetes only...you need either a thyroid specialist or at the very least a "generalist".  Best of luck with the switch back to Synthroid...let me know how it goes.

[jmidlife]

Hi,

Thanks for your response. He tested for RT3 but I know he doesn't believe in giving T3 alone.  I'm very discouraged.  The T3 activation on top of the on-going hyper-like symptoms was and is still unbearable.  In many ways, I'm feeling worse than before the combination treatment and I didn't think that was possible! My cortisol levels based on salivary testing (the blood serum morning cortisol level was fine) were elevated with the exception of one measure which was at the top of the normal range. I'm taking SeriPhos and Ashwaganda to lower the cortisol levels but am not noticing any effect.  Of course, this  T3 activation overrides anything else. Most likely, traditional physicians will not view my adrenals as problematic since salivary testing is normally not acknowledged.  

The new endocrinologist is part of an excellent endocrine practice and was recommended by a thyroid patient. I still feel like I'm at sea re: my medical situation and treatment plan.

So I'm back to 62.5 mcgs of  my "toxin:" Synthroid.  A year ago, I was tolerating twice as much!  

Again, I can't thank you enough for your incredible support and information..    Take care.

[JBlue2]

to: Goolarra and Jmidlife

I've been reading for hours and I'm exhausted.  I'm going to re-read this thread again tomorrow.  Jmidlife's story is so mine.  I feel poisoned by T4 synthetic also.  I tried Armour alone this past fall, and it made me feel worse.  Over the years, a holistic dr also had me on Armour along with levothyroxine .  I was always low on FT3.  I have just in the past few days been reading up on RT3.  Now finding someone to test me for RT3 is going to be a problem.  Just this week, I went and asked my Endo for cytomel.  It was like I was asking for hot lava.  They begrudgingly gave me 5 mcg a day and I only started two days ago.  I have asked her about RT3 before and she scoffed and said they rarely test for that.

Over the years my TSH has been all over the place, but then it went to .06 and I felt HORRIBLE but didn't know it was my thyroid and thyroid meds making me feel HORRIBLE.  The drs all wanted to be me on anti-anxiety or anti-depressants, which never helped, only made me feel worse.

I do have Hashimotos' and a really bumpy thyroid (forced drs to get me ultrasounds finally in the past two years).  I also really didn't understand what Hashimoto's was all about until this past year.

I have much more to this long story, but here are my latest numbers:

12-20-10
on 0.1 mg Synthroid

FT4  1.41 (range .82-1.77)
FT3  2.6   (range 2.0-4.4)
TSH 2.97  (range .450-4.5)


I could not handle the way 0.1 mg Synthroid makes me feel (heart races, brain fog, anxiety, yet unmovtivated)
so I was on .088 for the most part

3-15-11

FT4 1.9
FT3  2.6
TSH 2.8

this is the highest my FT4 has been, it's usually around 1.2

over the past 6 years, that I have actively had my proper thyroid levels taken (and found out I had Hashimotos), my FT3 has always been around the 2.3-2.6 level, and yes, a few times, when I really needed that FT3 number, whatever dr I was seeing at the moment, didn't do the Free T3 test for me :-(

part of the problem last year, one dr put me from generic levothyroxine to Levoxyl, which put me lower than .06 TSH ...... I had always been on generic levothyroxine, for the past 10 years, then Endo pushes the Synthroid brand.  It took me 10 months to figure out the thyroid med was making me have eye/facial muscles spasms, extremely anxiety in the afternoons, muscles spasms that were way worse than they had ever been.  The only thing I knew was by the end of the day, 6:00 p.m., things would start to calm down, that's when I started looking to the two prescriptions that I was taking, birth control pills and the thyroid med.

when I was at that .06 TSH, that dr did not do the FT3 test like I asked, he did the FT4 but did just total T3, I would have really liked to have know what my FT3 was at that time.


I am just starting with 2.5 of the Cytomel, easing into it, also, I have a chest cold from hell, so it's going to be hard to tell if I'm feeling better or not.

I really want to lower my .088 mg but I bet the Endo will never go for it.  She did write me a standing order for monthly blood work, at least, they do the FT3/T4 tests and do sort of go by how I feel.  I was surprised at her dislike for prescribing Cytomel, she did not tell me why really.

[goolarra]

I once asked my PCP about Armour...just asked about it, didn't request it.  I can only describe her reaction as rabid...she all but foamed at the mouth!  So much for doing what it takes to help the patient.

RT3 is a tough one to get tested for.  You can try demanding the test.  She might have a harder time ignoring the possibility if you have a test in hand suggesting RT3 dominance.  RT3 testing is also probably available online without a doctor's order.  You have to have FT3 and RT3 tested in the same blood draw as it's the ratio of FT3 to RT3 that's important, not raw numbers.

You're right, your FT3 is way too low.  It should be in the upper half to third of the range, and it should be higher in its range than FT4 is in its.  You'd feel a lot better, I'm guessing, with a better balance of FT3/FT4, i.e. lower FT4 and higher FT3.

Were you on 88 mcg prior to your 3/15/11 labs?  If so, I totally agree with you that a decrease from 88 is in order, especially since you added Cytomel.

A lot of doctors don't understand Cytomel and don't like to prescribe it.  They were taught in med school that if FT4 is okay, FT3 will be, also.  Very wrong.  Cytomel is very fast-acting and more difficult to control than T4 meds.  You usually have to take it more than once a day to avoid peaks and valleys, and many doctors don't think we're intelligent enough to deal with multiple doses.

The Cytomel can take a while to work, cold or no cold.  Why does somethig always have to happen to confuse results?

Your FT4 is clearly over the top of the range.  I don't understand why your doctor is reluctant to reduce your dose.  

I think you might just have a simple conversion problem and need to add T3 to your meds, as you are now doing.  If I were you, I'd hold off on the RT3 testing until you give the Cytomel a chance to work.  It's good that you're starting slowly and giving yourself time to adjust to the Cytomel.  You might find that you need to increase down the road...just keep an eye on FT3 and FT4.  

[JBlue2]

Thanks so much for replying, I wasn't sure if you would see my post.

In November, I was back on .1mg of Synthroid, and I just could not hack the way it made me feel.  My heart would race, I felt very anxious, especially 12:00 p.m.-5:00 p.m., it gave me the shakes like I had not eaten, but I am good about trying to keep up on my protein throughout the day.  I feel toxic just like jmidlife describes.  So in January, we went with me taking the .1mg on Mon/Thurs and .088 the rest of the week.  The day of, or mainly the next day of .1mg, I would not feel well.  So I pretty much stopped the .1mg, and time flew by, and it was mid-March already.  I went in to talk to the Endo about Cytomel, and we did a blood test that day.  

I am cutting that teeny tiny pill in 1/2 for right now.  Yes, I've already read around the internet about taking it throughout the day.  One fellow thyroid sufferer, said she, cuts it in 1/2, takes first thing in a.m., then cuts the leftover half in to 1/4 ... so she takes it 3 times a day.

Yep, we are not as stupid as they think we are stupid ;-)

Well, I was fairly "ignorant" about my thyroid and especially Hashimoto's all these years.  I did not realize it was what was making me feel so horrible.  No one really explained it to me, and they all just thought I needed to be on thyroid med and SSRIs, and I should be fine.  The only thing I finally figured out this past summer, was I would feel halfway better by the end of the day, around 6:00 p.m., less anxiety and muscle spasms.  Part of the problem last year, when I started to have more problems (eye/facial spasm) was a different dr, put me on Levoxyl versus the generic that I had been on for 10+ years.  I was TSH .06 at that time, and I'm sure the brand name made me even more hyper.  He also did not do the FT3 I requested, but did a total T3, so I have no idea what my FT3 was.  (hit head against wall)

That's half my problem, with insurance changing all the time, and drs leaving the area all the time, I always seem to have a different Dr/RNP every year.  No one has ever consistently worked with me.  I've learned to fight for myself, that's for sure.

The Endo did write for monthly lab work on my last order.  So I will keep the .088 and slowly increase the Cytomel to the 5 mg a day (I've read most people take, 5 mg twice a day), but I'm all about taking it easy.

re:  Armour, like I said, my body just did not like it.  It's release of T3 was too much, at least that is what I think (I tried cutting in half and I could feel it 30 minutes, making my heart race).  Or maybe my Hashimoto's didn't like the Armour?  I read different opinions about it on the internet.  

I tried 60 mg of Armour (no synthetic thyroid med) back in Sept/Oct and it did not go well at all.  But that silly dr, did not do a FT3 like I ASKED her to, when it was all going down.  **sigh**  All I know was my anxiety was off the charts and my hair started to fall out in clumps.

I have to look through my paper work, but a holistic dr I went to, 2007-2008, did have me on levothyroxine .075 ... then .088 and Armour (60 mg) ...... no wonder I was feeling like I was going to bust out of my skin ....  however, my FT3 was always consistently hovering around that 2.3-2.6 mark, always, even on the Armour.

Part of the reason, I stopped/started Armour was because of the shortage, then problems with the reformulation (I think it caused me hives).

So I will go get my blood checked in a month and see where things are at, and hopefully the Cytomel won't make me more anxious along the way ... then after that blood test, I might cut the .088 Synthroid in half and see what happens and how I feel.  I may get chewed out by the Endo if/when she finds out.  I live in a smallish town, so not many drs to choose from.

I am sending out feelers looking for maybe an internal medicine dr that is more open minded about T3, etc.

Sorry for typos, I proof-read but always seem to miss something.

[goolarra]

With your FT4 so high at the moment, I'm a little worried that adding T3 is going to put you over the edge into hyper.  The rule of thumb is to decrease T4 meds by 20-25 mcg for every 5 mcg T3 you add in because T3 is roughly 4 times more potent than T4.  Your FT4 is already over the top of the range, you were hyper on 88 mcg 5 times per week and 100 mcg 2 times per week.  So, it looks like you're really close to the edge, since 12 mcg twice a week made you hyper.

If you do have anxiety, just keep in mind that it may not be the T3 meds causing it, but that your FT4 levels are still too high.  T3 and T4 are not interchangeable.  Also, when you decrease T4 (which you haven't yet), it takes slow-acting T4 time to reduce FT4 levels, but T3 is faster acting and has a more immediate effect, so it's easy to "double up" in the transition period when FT4 hasn't gone down yet, but FT3 is coming up.

Unfortunately, half an 88 is probably going to be too much of a decrease.  If we could only write our own scripts... 3/4 of an 88 might be something to consider...

[JBlue2]

Thanks, and you are correct, now that I really think about it

the Endo, said hmmmm, your FT4 is high, but didn't say anything else about it... I had to re-remind her that I didn't want the next refill to be written up as alternating .1 mg and .088, I needed it to be .088 mg only.  I do have a bunch of .1mg, that I can cut in half, that would .050 mg.  Maybe I can alternate .088 and .050.  It would be so nice to have a dr/Endo on board with this.  Actually she is somewhat sympathetic, but she is the RNP not the Dr (he is even worse for not caring, I've heard, that's why I asked for the RNP, not the dr).

The alternating dosage idea was something I read on a chat around here .... and she went with that, otherwise, she really doesn't offer much more advice on anything.  No thinking outside the box.

Good grief, I felt like I was skating on thin ice as it was asking for Cytomel, seems like I needed to ask her to lower the .088 down to .75 mg.   Why didn't she offer that?

**sigh**

[goolarra]

You know, a lot of medical professionals really don't know about T3 meds because they so seldom use them.

Back before I knew much about my thyroid condition, I went to talk to my PCP because I was having such a difficult time increasing, and I wanted to bounce some ideas off of her (I didn't have an endo at the time).  I have a heart arrhythmia, and levo had made that unbearable.  T3 meds are contraindicated with arrhythmias.

I told you her reaction to my question about Armour.  She did, however, agree to give me Cytomel (I didn't know I shouldn't be taking it).  I was taking 44 mcg levo at the time, and her suggestion was to lower my levo to 25 mcg and add in 25 mcg of Cytomel...25 mcg...yikes!...she'd have killed me.  I didn't know a lot then, but I did know that T3 was much more potent than T4, and I got her to prescribe just 5 mcg of Cytomel AND reduce the levo to 25.  The Cytomel didn't make any difference, so I discontinued it in about a month.  She told me that 5 mcg Cytomel was "what we give to newborns".

She had absolutely no idea what she was doing.  I was pretty much on my own at that point until I found my endo, who I just love.  It is much nicer to have a doctor on board who cares.  You might consider shopping around for a new one...

[JBlue2]

what exactly is the compounded med that jmidlife was talking about ... compounded T4/T3, is that synthetic T4 and synthetic T3? or an Armour type product T4/T3?  

would getting these nodules cut off my thyroid make my life better or worse?

everything did get slightly enlarged in a year and half time between ultrasounds

thanks for your help

[goolarra]

Compounded is a synthetic T3/T4 blend, and it can be either traditional T3 or time-release/slow-release T3.  You have to find a pharmacy that's a compounding pharmacy, i.e. they make up custom prescriptions on site.

"Cutting" is seldom recommended for benigh nodules unless the circumstances are "dire", e.g. swallowing or breathing is being impacted.  Also, unless there are very few, they usually do a total thyroidectomy or a partial (lobectomy) if only one lobe contains nodules.  Unless the nodules show worrisome characteristic (they might be malignant or toxic, for example), the risks of surgery don't usually justify the benefits.

[JBlue2]

one more question, then I will leave you alone for awhile :-)

(they might be malignant or toxic)

how do I know if one of the nodules malignant or toxic?  it seems like the drs don't really do any tests on it that I didn't make them do ..... like ultrasounds

I know some of it has to do with the size of the nodule, and I have one that is just under the worrisome size, and it did get bigger from a year and a half ago.

what should I continue to make them do to make sure my nodules are not getting out of control?  

I know this Hashimoto's is making miserable with the hyper/hypo symptoms at the same time with one or the other being worse.

thanks
I kind of feel like they (the drs) are just ignoring until something gets bad, and I don't like to run things that way.

[goolarra]

There are a lot of characteristics of nodules that can be determined by U/S...their size, whether they're "hot" or "cold", hard or soft, blood flow to them.  I am by no means a U/S expert, but there are forum members who are very good.  If you have a U/S report, you might post it for one of them to help interpret.

Periodic U/S is how nodules are usually monitored.

It really sounds like you need a new doctor.  Any possibility of that?  It's so much easier to do this with a good doctor...

[esther1971]

id love to find out how its going?... red the whole thread, and im having similar problems.

2009 fine on 125/150 levo.
2010 got ill,
2011 started on too much aromour made me hyper
then down to 2 (from 5 grains) and felt good
somehow ended up under by xmas (tsh 55!?)
couldnt get armour to work loike it did again
2012 dr started me on levo again
last month i couldnt get out of bed (150, to 125, to 100/125 levo)
= 100 levo / 1/4 grain armour --- awful almost seizures in bed
= 75 levo / 1/4 aromur --- getting worse (& t4 dropped almost 1/2!??)
2 wks ago told v. toxic. stopped levo.
waited just over a week.... (t4 was 13 (9-19))
started t3 5mg daily, then 5+5mg daily.... horrid night seizures again!??

what can i do?.... i dont have any meds left in my body now surely?... why cant i tolerate the t3 (i am supporting my adrenals/taking iron etc.)...

any ideas... should i stop the t3 longer?... im tired, but feel better WITHOUT it?

any ideas?

[Barb135]

This is a very old thread and the original poster is no longer active on the forum, so it's unlikely you will get a response.

Your situation might get more attention if you post a new thread, of your own.  You can do that by clicking on the orange "Post a Question" button at the top of the page.  You will get a blank form to type your questions, comments, then click the green "Post a Comment" button, just below your comments.

Be sure to list all test results you have and be sure to include reference ranges, since these vary lab to lab and must come from your own report.  

Also please specify whether or not the T3 and T4 are "free" or "total".  That makes a big difference.