Heart Palpitation and Extreme anxiety after graves and total Thyroidectomy

[gravesguy]

Had a total TT 4/21/16
Blood tests at 6 weeks post TT:(6/1/16):
TSH - 3.03 (range 0.40-4.50)
FT3 - 2.6 (range 2.3-4.2)
FT4 - 1.3 (range 0.8-1.8
Reverse T3 - 31 (range 8-25)
I took this blood work 24 hours after I took my Levoxyl

I had to ask a GP for this reverse T3 test as endo would Not order it. Also pretty much begged for a free T3
On this first 112mg dose I felt VERY jittery anxious and horrible again. Was put on 125mg Levoxyl 6/10/16 1st week on 125 mg Levoxyl felt heart palps and anxiety flutter and did not feel good , but second week actually felt ok as far as my heart palps and racing. That week or so did not last long and now heart palp, extreme anxiety etc  are back.

Do I need more T4? Or do I need more T3?
Could a lower end T3 be causing all this? Or something not related to my thyroid at all? The reason I think it has something to do with my thyroid is because all these heart palps, flutters, racing heart, extreme anxiety etc. started when I was diagnosed with graves APR 2015

I am currently waiting 4 weeks on 125mg Levoxyl and then will retest my thyroid levels.
I have seen a cardiologist and  have had eco and exam and heart doc says nothing is wrong with heart. He also ordered a heart monitor which I have been wearing for a week and will be for at least a couple weeks to rule out heart as a cause.

I have seen several Endo’s since my TT and don’t really have a lot of faith in any of them. One said and I quote “ reverse T3 doesn’t mean ****” which has made question things lol. Endo also recommends I start an SSRI.  I have met with a naturopath that will prescribe me T3, but cautioned me that it may increase my heart palps which is the LAST thing I want.  The naturopath thought it might be something adrenal and did a full adrenal panel a DHEA and a 24 hour urine test and all those came back within range.

I just went back today to the naturopath office and seen a PA there who worked in endocrinology before joining this office and he said due to my heart palps I should take one 125mg pill every other day?? And if I felt to drained then to take half a 125mg pill one day then a full pill the next. This kinda caught me off guard and not sure about how I feel about this

Besides these horrible heart race/palps I have extreme dizziness, but I think that may be something else.
I absolutely need to figure this out as no doctor has helped me yet and can tell what exactly is causing these heart palps. I have been prescribed beta blockers and calcium channel blockers for my heart rate, but they were horrible and also made me very fatigued.

Most all the docs I have seen have just shrugged it off. I can’t handle these symptoms or do much of anything at all and is very debilitating and pretty confused on what to do.

Please if you need me to provide you with any further info or if you have any thoughts on this let me know,
Thanks

[gimel]

Sounds like a good plan.  I would not worry about splitting the T3 dose when only taking 5 mcg.  When you go up to 10 or higher then you can start splitting the dose.  

Please let us know how you are doing as you proceed with this.  

[gravesguy]

Thanks. O yeah and any info on any good doctors in UT or salt lake city that know what they are talking about?

[gimel]

Yes, a hypo patient for over 45 years.  

I am saying that your high Reverse T3 combined with your low Free T3 are causing you to be hypothyroid.  From a very long list of symptoms that can be related to hypothyroidism, this is the section on Emotional symptoms.

    Tension
    Irritability
    Wanting to be solitary
    Mood swings
    Anxiety
    Personality changes
    Feelings of resentment
    Jumpy
    Easily startled
    Lack of confidence
    Nervousness

In another section you will find these heart related symptoms:

Fast pulse (over 90 bpm at rest)
Arrhythmia (irregular heartbeat)
Skipped beats
Heart flutters
Heart palpitations
fibrillations

Dizziness can also be a hypo symptoms.  So from your symptoms and also your FT3 and RT3 levels I think you are hypothyroid and need to get the doctor on board to lower your T4 med and add some T3 med adequate to get your RT3 back to the middle of its range, and your FT3 into the upper part of its range.  

Also don't overlook the importance of D, B12 and ferritin, as I mentioned above.  In addition, low ferritin is reported to sometimes cause palpitations.  

The best way to prevent false high thyroid test results for both FT4 and FT3 is to just defer your morning dose until after the blood draw.  I am sending you a PM with info.  To access, just click on your name and then from your personal page, click on messages.  

[gravesguy]

Ok thanks and sorry for you being Hypo so long.. Sounds like you have a great handle on it though? So I take my Levoxyl first thing in the morning, is it best to have a blood draw like 24 hours after your dose?

I have had my B12 and ferritin tested with my last thyroid labs

VITAMIN B12 735 (range 200-1100)
FERRITIN 144 (range 20-345)
last vit D was 46 and tested in APR 12 2016

So how do I know if I want to reduce my T4? And wont adding T3 make my heart palps worse?
I will try this route tho, just curious as increasing my heart palps would be the last thing I want.

Honestly how long do you think it takes for a new dose to build up in your blood? 1 week? weeks? I ask because I will get my new thyroid labs done this coming Friday and if I stay on my 125mg till then, then this will be 4 weeks on 125mg Levoxyl.

I am just sick of waiting so long to test stuff. I understand though that it takes time, I would just hate to wait longer than necessary.


I hope I can get my docs on board, well I definitely know I cant get my endocrinologist on board, just my naturopath.  the thing I wonder about is how low I should lower my T4 dose and if I even need to lower that if I am at 50% range? And how much T3 I should start?

Is the reason I want to reduce T4 is because it is making my reverse T3 to high?

THANK YOU for all this info it is Great!!

[gimel]

I just sent you a PM with some info.  To access, just click on your name and then from your personal page, click on messages.  

[gravesguy]

Ok sounds good. So I guess I will find out my next labs within the next day or two and report back and see how low or high I am on my T3 and T4s.

Alright I will be starting some T3 after going over my next labs and seeing how much I want to reduce the T4.

something I noticed that is strange is I did a lot of manual work like yard work these past 2 days and my heart palps were not as bad and almost normal for those two days? Weird..

Thank you for this info and I will report back with my new labs

[gimel]

I know very little about those urine tests, but assuming that being within the range is okay, I see nothing of concern with those or the DHEA-S test.  

Yes, T3 has a short half life of about one day.  T4 has a half life of about a week.  So you only need to defer the morning dose of med until after the blood draw.  

I doubt that 5 mcg of T3 would be enough.  I would ask the doctor about reducing your T4 med from 125 down to 75 and adding 15 mcg of T3.  If he agrees then I would start with only 5 mcg and see how you accommodate that before increasing to 10 and then 15 mcg.  

[gravesguy]

ok so I got my labs back of 4 weeks on 125mc Levoxyl.

7/8/16
TSH - 1.46 (range 0.40-4.50)
FT3 - 2.5 (range 2.3-4.2)
FT4 - 1.7 (range 0.8-1.8
Reverse T3 - 35 (range 8-25)
(These were taken 12 hours prior to my levoxyl dose)

Met with the PA to discuss and still having racing heart, extreme anxiety and all that. He said to lower my dose of Levoxyl to 88mc and I agreed to do this and this alone for a week or until I feel increase of symptoms.

I asked him about adding T3 and he said that is ok. So I will try reducing this dose to 88mc for a week and see how I feel, but regardless I will add 5mc of T3 next week and increase the T3 if I need to.

Any thoughts? Also was wondering about dividing the T3 dose to twice a day taking the first half with my morning empty stomach dose, but unsure on when I should take the second half of the dose?

Thanks

[gravesguy]

Hey sorry for the late reply. alright here is my adrenaline urine test and DHEA

DHEA SULFATE : 391 (range 106-464 mcg/dL)

24 hour adrenaline urine test
METANEPHRINE : 124 (range 36-190 mcg/24 h)
NORMETANEPHRINE : 139 (range 35-482 mcg/24 h)
METANEPHRINES, TOTAL: 263 (range 115-695 mcg/24 h)
DOPAMINE, 24 HR URINE : 229 (range 52-480 mcg/24 h)
CREATININE, 24 HOUR URINE : 2.16 (range 0.63-2.50  g/24 h)
NOREPINEPHRINE, 24 HR UR : 34 (range 15-100 mcg/24 h)
CALCULATED TOTAL (E+NE) : 40 (range 26-121 mcg/24 h)
EPINEPHRINE, 24 HR URINE : 6 (range 2-24 mcg/24 h)


Well I was going to get my labs done tomorrow(7/8/16), but I was planning on doing it like 10 hours after my dose. Now if I skipped my dose till tomorrow it would be like 28 hours between doses. Or I might just test another day.

Would starting like a 5mg generic  liothyronine be ok? and I heard to try and split the dose?  

Also I am type one diabetic and have been for 18 years and not heart palps and was a lot worse control than I have now, so pretty sure that it not it.

I have two appointments with some neurologists today and they will suggest I be on proac for my dizziness which I will do, but not sure if I should start that until a couple weeks on T3? Or if that even matters. The reason I am starting prozac is because of my dizziness and I have what they call Persistent Postural-Perceptual Dizziness. And they say that it can help balance out my vestibule system with a low dose. Not sure if this is true, but guess I will find out. I have been very reluctant to try an SSRI, but between my chronic dizziness and my heart thyroid stuff I simple have zero life and cannot do anything but be home ridden.

another question about the time of your thyroid labs, doesn't T3 pills have a very short half life, so wouldn't testing at 24 hours also not be very accurate?


I REALLY appreciate your info about all this thyroid stuff and making things make sense THANK YOU.

[gimel]

To avoid false high results, just don't take your morning dose of thyroid med until after the blood draw.  

Your B12 and ferritin should be adequate.  Your D is a bit lower than recommended, which is 50 minimum, so you could supplement that with a daily dose of 1000 IU of D3.  

I would like to see what adrenal related tests were done and the DHEA and the 24 hour urine test.  So, please post those results and ranges shown on the lab report.  

Regarding the suggestion to reduce T4 med in order to reduce your Reverse T3 level, here is a good link to info on that.  

https://www.nahypothyroidism.org/thyroid-hormone-transport/#reverse T3

In the link it is stated "Because increased rT3 is a marker for reduced uptake of T4 and reduced T4 to T3 conversion, any increase (high or high normal) in rT3 is not only an indicator of tissue hypothyroidism but also that T4 only replacement would not be considered optimal in such cases and would be expected to have inadequate or sub-optimal results.  "

From another source, the postulated causes of reverse T3 dominance include a broad spectrum of abnormalities such as "Leptin resistance, inflammation, dieting, nutrient deficiencies such as low iron, selenium, zinc, chromium, vitamin B6 and B12, vitamin D, iodine, low testosterone, low human growth hormone, insulin dependent diabetes, pain, stress, kidney disease, severe or systemic illness, severe injury surgery, toxic metal exposure".  As you can see there are a lot of possible causes, so that is why the best short term approach is to reduce the source of T4 that is converted to RT3.  I have done that myself in similar circumstances and found it to be successful.  

Along with that you need to raise your Free T3 level.  There is no reason to think that adding T3 would make your palps worse.  Just the opposite.  Your current level is much too low in the range, while your RT3 is significantly above range.   As a result, you are hypothyroid, with a lot of hypo symptoms..

Before discussing specific changes I would like to see your adrenal panel results and the DHEA and urine test results.

[gimel]

It is just incredible to me that so many doctors would look at your thyroid test results and tell you that isn't a problem.  First thing is that TSH is basically useless as a diagnostic when already taking thyroid med.  Beyond that your mid-range Free T4 is at an adequate level.  Your Free T3 is at only 16 % of its range, which is much too low for many people.  Due to the erroneous assumptions used in establishing ranges for Free T4 and Free T3, the ranges are far too broad and the lower half is frequently too low for many hypo patients.  In addition your Reverse T3 is even above the range.

Understand that thyroid metabolism takes place at the cellular (tissue) level and that is where it is most important to have adequate Free T3 effects.  Serum thyroid hormone levels can be quite different from tissue thyroid levels due to a lot of intervening variables.  Symptoms are the result of tissue thyroid levels and metabolism.  If serum Free T4 levels are adequate, then it becomes a matter of adequate conversion of T4 to T3, without excessive conversion of T4 to Reverse T3.  Excess RT3 is a conversion deficiency, not a direct thyroid problem.   If, for a number of reasons, too much T4 is converted to Reverse T3, there is evidence of RT3 binding to membrane receptors and producing hypo-metabolic effects. There is adequate scientific evidence that "RT3 is an excellent marker for reduced cellular T4 and T3 levels not detected by TSH or serum T4 and T3 levels. "   It is also said that the ratio of Free T3 to Reverse T3 is the bet indicator of tissue thyroid effects.

Due to the number of variables that can adversely affect the conversion of T4 to T3, it is usually more effective short term to actually reduce your T4 dosage, in order to reduce the amount of T4 available for conversion.  In addition you will need to add some T3 med to both raise your Free T3 level into the upper part of the range and also increase your Free T3 to RT3 ratio.  What you want to see is your RT3 back down to around the middle of the range and your Free T3 in the upper part of its range.  

In addition, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  If not tested for those, I suggest that you do so and then supplement as needed to optimize.  D should be about 50, B12 in the very upper part of its range, and ferritin should be about 70 minimum.

So you are going to have to find a good thyroid doctor that will treat you as described, as needed to relieve symptoms, rather than by test results and reference range endocrinology.   If you want to work on your doctor to try and get that done, then I will be happy to provide some scientific evidence of what I have said above.  If you need to find a good thyroid doctor, please give us your location and perhaps we can suggest a doctor that has been recommended by thyroid patients.

  

[gravesguy]

Thank you for the response gimel. Do you have thyroid problems as well or do you just know TONS of info about it lol? This was great info. Yes you can provide that, that would be great! Also I am in salt lake city Utah.
My naturopath seems pretty lenient and willing to work with me I guess I still am confused on what to ask and where to go from here?

His PA's suggestion is to cut my dose of Levoxyl only in half, but I don't think that suggestion is a great one. Would testing my thyroid levels on my new dose of 125mg at 3 weeks be to soon? should I wait the 4 weeks to test levels?

So you are saying because I do not have enough T3 this is causing my symptoms of heart palps, extreme anxiety, internal weakness shaking felling etc?

Also, my naturopath told me to test between 6-12 hours after taking a dose and I know you recommend 24 hours, but would like 8-10 hours after taking your pill still be good?