Sensitivity to Synthroid

[jmidlife]

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.

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This is a very old thread and the original poster is no longer active on the forum, so it's unlikely you will get a response.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

[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?

[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...

[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]

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]

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]

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]

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]

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 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]

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]

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.

[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.

[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]

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.

[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.

[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]

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.

[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.
.

[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]

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]

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]

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.  

[jmidlife]

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