Sensitivity to Thyroid Medication

What do you do if you have a sensitivity to synthetic thyroid hormone, when a small dose is taken you also have to take a beta blocker to counteract the tachycardia, you're a poor T4 to T3 converter and you're endocrinologist doesn't want to prescribe a T3 medication because of "cardiac contraindications" so you continue feeling like crap?

[goolarra]

Your story sounds like mine in a lot of ways.  I have a congenital heart defect, so I've had episodes of tachycardia all my life.  It never required meds, until I started levo.  Long story short, my PCP started me on way too high a dose of levo (88 mcg), and I had to back off and back off down to 25 mcg, and still my tachy was going wild.  I was having 20-30 episodes per day as opposed to 3-4 per year before levo.  Enter the beta blocker.  I've been on beta blockers ever since...I don't think a lot of taking one drug to counter the side effects of the other, but I have Hashi's as well, so not taking thyroid meds is not an option.

In your original post, you imply that you're a slow converter.  I really don't see that in the labs immediately above.  Your FT4 is at 24% of range, and FT3 is at 33%.  Both are lower than many of our members are comfortable at, but your ratio of FT3 to FT4 does not indicate a conversion problem.  It looks quite good, actually.  A conversion problem is usually indicated when FT3 is lower in its range than FT4 is in its.

More questions...I'm sorry...do you have your March labs to compare FT3 and FT4 after stopping meds.  The trend is often the most telling part.  You said you hadn't been taking your levo regularly before these labs...what exactly had you been taking?  What adrenal tests did they do, and how did they come out?

Your TSH did go down after stopping meds, but TSH is very volatile (it can even be affected by the time of day the blood was drawn), and I would not even consider 8.2 to 7.2 a significant difference.  However, in both cases, TSH is well above range, so apparently your pituitary "thinks" your levels are too low as well.

As the antibodies compromise thyroid function, they unfortunately don't do it on a nice, gentle downward slope.  There's often a lot of sputtering and fluctuating from hypo to hyper.  It's possible that in March your thyroid was producing a bit more than it had been previously, causing your trip to the ER.  However, at this point, your labs look like you are in need of meds.

[Barb135]

My first thought is that you should find a different doctor!!  

That said, can you post your latest thyroid lab results, with reference ranges, so members can get a better idea of your situation?  

What type of medication are you taking, and what dose?  Have you had a cardiac workup to make sure there's nothing wrong with your heart?  

Sorry to ask so many questions.  

[goolarra]

I'm extremely sensitive to thyroid meds as well.  I'm just going to add a couple more questions to the ones Barb has already asked.  Sorry, again!

How long have you been on meds altogether?  How old are you?  Were you hypo for more than a few months before starting meds?  Is the tachycardia something new or a preexisting condition worsening?

[coco727272]

I'm 38 years old and I was diagnosed with hypothyroidism Jan '10 but Hashimoto's in '08 by an allergist who told me that although I had a TSH of .83 at that time I would eventually develop hypothyroidism because I had antibodies against my thyroid (I saw him because I had chronic urticaria). Well, he was right.

So, I started taking levothyroxine in January of last year. I had thyroid function tests since I was a teenager because I had horrible anxiety and my tests were always normal. I had an annual exam and they finally found evidence of thyroid malfunction the beginning of last year.

I do have a history of slight mitral valve regurgitation (I just recently had another echocardiogram).  I would occasionally get PVC, PACs and tachycardia...nothing that I had to be on medication for. Around June of July of last year my doctor tried to increase my levothyroxine from .25mg to .50mg and I developed tachycardia so I went back down to .25mg. Last month I thought I was having a heart attack and I couldn't calm down at all so I ended up in the ER. My TSH climbed to 8.23 and it was never above 4.0 in the past. The .25mg seemed to cause me problems right before this. So I made an appointment to see the endocrinologist 4 days later and she thought that my adrenals could be the problem so I stopped taking the levothyroxine altogether. Oh, I think I should mention that I started my cycle a day after the ER visit.

I just had my adrenals checked on 4/26 and they tested my thyroid function again. Now remember that I haven't been taking the levothyroxine regularly since the end of March and my TSH was 8.2 then.
On 4/26 my results were as follows:

TSH 7.210  .450-4.5
FT3  2.8      2.0-4.4
FT4  1.05    .82-1.77

Thanks for the help

[goolarra]

Your story sounds like mine in a lot of ways.  I have a congenital heart defect, so I've had episodes of tachycardia all my life.  It never required meds, until I started levo.  Long story short, my PCP started me on way too high a dose of levo (88 mcg), and I had to back off and back off down to 25 mcg, and still my tachy was going wild.  I was having 20-30 episodes per day as opposed to 3-4 per year before levo.  Enter the beta blocker.  I've been on beta blockers ever since...I don't think a lot of taking one drug to counter the side effects of the other, but I have Hashi's as well, so not taking thyroid meds is not an option.

In your original post, you imply that you're a slow converter.  I really don't see that in the labs immediately above.  Your FT4 is at 24% of range, and FT3 is at 33%.  Both are lower than many of our members are comfortable at, but your ratio of FT3 to FT4 does not indicate a conversion problem.  It looks quite good, actually.  A conversion problem is usually indicated when FT3 is lower in its range than FT4 is in its.

More questions...I'm sorry...do you have your March labs to compare FT3 and FT4 after stopping meds.  The trend is often the most telling part.  You said you hadn't been taking your levo regularly before these labs...what exactly had you been taking?  What adrenal tests did they do, and how did they come out?

Your TSH did go down after stopping meds, but TSH is very volatile (it can even be affected by the time of day the blood was drawn), and I would not even consider 8.2 to 7.2 a significant difference.  However, in both cases, TSH is well above range, so apparently your pituitary "thinks" your levels are too low as well.

As the antibodies compromise thyroid function, they unfortunately don't do it on a nice, gentle downward slope.  There's often a lot of sputtering and fluctuating from hypo to hyper.  It's possible that in March your thyroid was producing a bit more than it had been previously, causing your trip to the ER.  However, at this point, your labs look like you are in need of meds.

[Auntlello1]

I am by no means intelligent when it comes to thyroid issues yet, but after suffering for 23 years with Hashimoto's you would think I would pick up something here or there!

My only question for you is has anyone discussed trying medication that was not synthetic? Maybe the natural dessicated thyroid medication or even compounding just for your needs? Just a thought, as I had horrible problems on Synthroid, and even worse problems when they started substituting my Synthroid with the generic.

Sounds like you have quite a few things going on, and finding a doctor with great thyroid knowledge would be the first thing to do, although not very easy.

Best of Luck!

Heather

[goolarra]

Unfortunately, T3 meds are contraindicated with heart arrhythmias.  Luckily, synthetic T4 works well for me.

I really only have the two things going on...heart arrhythmia, which I've had all my life and have pretty much come to terms with, and Hashi's.  My doctor is fantastic.  When I first saw him, I'd been through the wringer and was totally prepared to be seeing yet another idiot, but I love him (nope, he's neither young nor good-looking, and I'm not easy...on doctors , that is!).

I'm coming up on 11 months with zero episodes of tachycardia...this is a record set in 1958, when I was 7 years old!!!  I'm also knocking on wood.  I'm considering backing off the beta blocker (you have to wean off) a little...doubt I'll get it down to nothing.  However, I am so enjoying being tachycardia-free that I keep putting it off.  My endo is going along with whichever decision I make.  

[danie17075rm]

I have an intolerance to taking the meds right now too.  Even when my tsh was 26 I could not tolerate it.  As it turned out, the uptake showed my thyroid is really taking in TOO much iodine (hyper) even though the lab shows hypo.  I'm not sure yours is anything similar, as I don't even understand mine lol, but I really hope it calms down for you =).  

[coco727272]

Unfortunately when I went to the ER they didn't do a FT3 only a FT4...I don't know their reasoning behind that one. Before the ER visit I was taking levothyroxine .25mg regularly. I had an ACTH stimulation test on 4/26 and my results were:

Baseline 4.4
30 min    20.8
60 min    24.1

I'm not taking the levo again until I talk to my endocrinologist this week because I haven't gone over the test results with her. So, dessicated and compounded thyroid medication is contraindicated when you have tachycardia? What should I do if I have tachycardia when I'm not even taking the levo which is what's happening right now and I'm currently taking 25mg of metoprolol?  Should I have more tests done (uptake, etc.) or lower my dosage of levo and increase it slowly and increase the dosage of metoprolol or change to another beta blocker? LOL...sorry for all of the questions but I need to get where you are :). Forgot to mention that I had an ultrasound of my thyroid on 4/28 so I'm waiting for those results also.

[coco727272]

Thanks for your inputs and concerns danie17075rm and Auntlello1 :).

[danie17075rm]

Maybe you need an increase in the beta blocker.  You could respond to a different beta blocker though.  I know they started me on Toprol xl and that was the worst nightmare of my life.  Not only did it not work for me, it made me have HORRIBLE symptoms on top of what I already have.  I take atenolol now which I LOVE.  It's like the best sensation to take it and have my heart rate go right down.  If its not working talk to your doc about increasing the dosage or changing.  Once you find the right amount the beta blockers are a God send.

[coco727272]

Thanks, I'll talk to my doctor about the change :).

[goolarra]

It's often hard to get FT3 testing (especially n a setting like the ER).  You're lucky they bothered with FT4!  I'd like to see the FT4 result, though, from when you were still on meds.  Please provde range also since the ER might have used a different lab.

Do you have the ranges on your ACTH as well?

Yes, T3 meds are contraindicated with tachycardia.  T3 is much more volatile than T4 and can get your heart going pretty fast (in a heartbeat?  LOL).  However, as I mentioned above, I don't really see a conversion issue in your labs, so that may be a non-problem for you as it has been for me.

I agree with danie...ask your doctor about a different beta blocker and/or an increase.  I'm on atenolol as well.  I haven't experienced any permanent side effects from atenolol.  When I first started it, I felt a little "slow" for a while, but that sensation quickly went away, and I don't even think about it any more.

After my initial too high starting dose, I backed off to 25 mcg levo.  I hit every dose I could on the way up.  I split and/or combined pills, alternated.  I think I did 37.5, 44, 50, 62.5, 69 and 75 (still there).  Somewhere along the line, I had to increase the BB from 25 mg to 50 mg.  After each levo increase, I gave my body plenty of time to get used to the new dose (at least 4-6 weeks, longer if tachy returned).  It took me about a year to get from 25 to 75.  Slow and steady...just keep moving in the right direction.  Some of us are just more sensitive than others.  I'm sensitive to all meds, not just thyroid meds.

[coco727272]

I can't find the FT4 level from the ER but from what I remember it was 1.10. I'll have to get the value on Monday. They didn't provide the ranges for the cortisol levels so I'll to check into that also. I'm not being of any help right now...LOL.

Well, so much for the T3 but I will talk to my doctor about the BB. I was meaning to ask you what the ratio of FT3 and FT4 should be and I'll let you know the value and ranges soon.

Thanks so much

[goolarra]

FT3 should be higher in its range than FT4 is in its range.  These are not raw numbers...you have to figure the percent of range for each.  For example, if FT4 is midrange (50%), we would expect FT3 to be somewhere between 70-80%.  These are not hard and fast numbers...as long as FT3 is higher, then a conversion problem is not indicated.

I'll be interested to see your FT4 from the ER.  

[Brucergoldberg]

I went through the same thing.  Goolarra helped me through quite a bit of my agony.  I tried the beta blocker as well and found that the beta blocker just made me tired but didn't help any of my symptoms.  I found that my blood pressure was already on the low side so taking the beta blocker just slowed me down.  

I tried everything.  Every t4, t3 etc.   I spent 8 weeks preparing by trying to strengthen my adrenals and supporting the thyroid to prepare.  My tsh was at 7.93 for 6 months.  The tsh finally went up the ladder to 25 and the doctor said she felt I was ready to try some thyroid.   I started at a high dose this time with .50 and now a month later I am on .75.   I am still not great, but I am much much better.   One thing that I could tell you is that the first 10 days was very difficult.  Then My body leveled off.   Then I got hypo again and went and got tested and increased.  I'm on day 2 of .75 and I'm back in the adjustment period again.   There are some things I take to get through the adjustment period but it is still very difficult.   My "wonkiness" always started 4 hours after taking the thyroid and would usually wear off as the evening approached.

Have you had your iron tested?     What about the 4 spit adrenal test?   I found that my nighttime cortisol was off.   There are things you can take to help you through the adjustment period.   Sort of like training wheels.  

Not sure if I want to discuss these things on here as these can be contoversial, but I'll be happy to privately point you in the right direction.

Bruce

[coco727272]

I still need to have my iron checked and I've only had the ACTH stim test done. I posted the results above. My doctor is old school so I don't think she'll do a saliva cortisol test. I can ask though and if she says no I'll see if I can get it done somewhere else.

What things did you take to help you adjust? You can send a private message if that makes you feel better.

[Paus]

hi coco727272, I take synthroid 150mcg for 2yrs, but since synthroid are no longer available here in the philippines i changed thyrax, 150mcg, I got a lot of terrible experienced like i feel so weak, & my TSH gone up to 19.20-TSH & got alot of reaction like shaking hands, head feet, itchy tremor & my knees seems weak, i don't know if this side effect,? for now im stick to thyrax hopefully my body will adjust.

[coco727272]

Hello,
Do you have Hashimoto's or just hypothyroidism? Seems like they should lower your dosage of thyrax and slowly increase it. What does your doctor say?

[Brucergoldberg]

Paus,  the itching is a sign of hyperthyroidism,  the thyrax  sounds stronger.

[coco727272]

I found out that my TSH was 1.10 when I was on levothyroxine and I still didn't get the ranges for the ACTH stimulation test but my endocrinologist said that I didn't have adrenal insufficiency. She thinks this because although my baseline was low, my adrenals were properly stimulated with the cosyntropin and my MRI/MRA didn't show anything wrong with my pituitary gland.

[coco727272]

Oh, she wants me to start taking the 25mcg of levo again right away.

[goolarra]

What about the beta blocker?  Any luck with those?

[Paus]

hi, I only have hypothyroidism, my dr. said just to continue my 150mcg (Thyrax) thats my regular maintenance. why im experiencing right now a tremor, shaking hands,feet, head, & cold feet, cold hands, & i feel weak sometimes,  am i having a hypothyroid symptoms or just a side effect,?

[Paus]

Brucergoldberg, hi i think your  right, but my regular dose since 2008 is 150mcg of synthroid  but since synthroid are no longer available here in Phil. i take thyrax 150mcg, do i need to decrease my dose?

[coco727272]

Goolarra, the beta blocker does seem to help some. I found out that the left lobe of my thyroid is markedly atrophied and the radiologist didn't know if it had been surgically removed. I'm not sure how this affects my diagnosis of Hashimoto's because I haven't heard of this before.

Paus, how long have you been having these symptoms? If I were you I would ask my doctor to lower the dosage and slowly build it back up.

[Brucergoldberg]

Paus,  you should start your own thread.  May be easier, but you know you can get your thyroid by mail?   There are pharmacies that will ship to you.   I don't think I want to tell you to decrease your dose because am not a dr.   For me, the itching went away after three days.  It was mainly at night when I slept.   Did you get tested for hashimotos?

[Brucergoldberg]

Coco,  which beta blocker are you on?  Propranol and enderol are good choices.  They come in low doses.  It's what marksman take to steady their hands when they are shooting rifles.   Some of the beta blockers be direful and do not take if your blood pressure less than 110/70.

[Paus]

i never had hashimoto's test?  if im a hypothyroid i still can have hashimoto's? the cause of my hypothroidism was radioactive.

[Paus]

i was experiencing this symptoms when i started taking thyrax..when i was taking synthroid my condition was going well only few symptoms but not really bothering me at all..its only now when i take thyrax.

[coco727272]

Oh, you've been exposed to some kind of radiation? Hashimoto's is an autoimmune disease and can only be diagnosed with a blood test but it doesn't sound like that's what you have.

I agree with Bruce, I would post a new question on the forum so someone can focus solely on you, but it seems as if the thyrax is causing the symptoms and the dosage may be too high. I would only lower the dosage if my physician suggested that I do so as I mentioned above.

Talk to your physician and ask them their opinion. I hope everything goes well:).

[coco727272]

I'm taking metoprolol. I don't have a decrease in blood pressure because I monitor it. I've taken propanolol in the past and I didn't like how it made me feel. People with social phobia take it before giving speeches also.

[Paus]

yes have been expose to radiation.thanks a lot hopefully this kind of symptoms have been experiencing everything will go normal.& i hope i can adjust to thyrax.

[esther1971]

hey bruce, i was wondering if you might let me know of those 'training wheels' you were speaking of... messaging me directly is fine. i'd appreciate it.
esther