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Post Total Thyroidectomy steel feeling heart palps and Hyperthyroid.

4606 Views 21 Replies 10 Participants Last post by  my3gr8girls, 
T
I had a total TT 4/21/16 due to terrible graves symptoms in hopes that it would be easier to manage. I would not have been so comfortable about going through with everything without coming here. As far as the Surgery, it went ok and had my post op visit. Guess they took out one of my parathyroid's because it was inflamed and did not look right, so they decided to take that as well rather than doing another surgery in the future.

For the first like 10 days I felt weak especially in my legs and now 31 days post-surgery I get fatigued a lot easier than before, pretty much since 3 days after surgery my heart palps are back. I am on 112mg of Levoxyl. I feel VERY jittery anxious and horrible again. I feel a small difference in the pace of my heart rate being a tad slower, but if I go up stairs or kneel down and stand back up etc it will make my heart thump so hard, not super-fast just very strong palpitations. my other main symptom is I am also getting this internal weakness, shaking, low blood sugar feeling a lot. I am type 1 diabetic and know what low blood sugar feels like, but my sugar is not low?? I get this feeling in the middle if myself like throat, chest and stomach that is somehow connected to my heart, I know that probably does not make sense kinda hard to explain, but definitely a very scary and horrible symptom I can't handle.

I have seen 2 new endos and 3 new GP's since my surgery and the GP's were clueless and the endo just wanted to wait and relied heavily on the TSH. They also did not want to see me back for 3 months. I have an apt with my normal endo. I just have not found one I really like or that really cares how bad I feel. I am hoping to find a great GP soon, but god damn its hard to find a good one lol. at least for me in my area it is.

I had a wedding about 2 weeks after surgery and was a groomsman and this was the worst day as far as my heart racing since surgery. My heart rate was in the 150-160s and I felt absolutely horrible. I know I do have some anxiety, but my anxiety is only about my symptoms lol.

I have been told by my endo and another GP to just wait 6 weeks from my surgery date and then test my thyroid levels (TSH, FT3 and FT4) to get an accurate picture of whats going on. I understand this as it takes time for my body to adjust and the Levoxyl to level out.

They tested my thyroid itself after surgery and found a spec of cancer. I guess no bigger that a pinpoint of cancer and said absolutely nothing to worry about. Still with the thought of even the smallest bit of cancer inside me I am glad I got it out.

I got the stomach flu 19 days after surgery and the tested blood and at the time tested my thyroid levels. I know they probably don't reflect much of a stable level or anything but here they are from 5/10/16

FT3 2.1 range- 1.8-4.2

FT4 1.68 range- 0.30-1.90

Triiodothyronine 0.60 range- 0.70-1.70

TSH 1.49 range- .0.34-4.82

What is the difference between Triiodothyronine and T3 in blood tests?

In this test what percent is my FT3?

My endo and all the docs say to wait at least 6 weeks before testing my levels post-surgery and I guess I will wait and suffer till then, but after this first 6 weeks if I am still symptomatic I guess I will demand testing at about week 4.

I know I am still adjusting and may take a little time I was just hoping I would feel a lot better than I do and pretty sure I am on the wrong dose of T4 for me. I weight 149 so they based the 112mg of Levoxyl on my body weight. Maybe I am on to much?

Any help or thoughts will be greatly appreciated thanks :)
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Octavia
I would be a little surprised if your dose of 112 is too high for you, but stranger things have happened.

It's a little too soon after your surgery to tell, but based on the results you posted from 5/10/15, I suspect your body is not converting T4 to T3 like it should be. I say this because your Free T4 is relatively high (but still okay), but your Free T3 is pretty low, even though it is within range. If this is the case, your next step could be a decrease in your Levothyroxine while adding a T3 drug such as Cytomel. Then wait 6 weeks and re-test.

Question: on 5/10, had you taken your Levo prior to your blood draw?
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creepingdeath
Ahhh........six weeks is what they always make you wait.

And nothing ever happens.

If that synthetic junk was identical to what your thyroid naturally makes then you would have relief in days not months.

You sound similar to what I felt like on synthetics.

Once I started taking desiccated thyroid all those nasty shaky symptom that caused me to have anxiety started disappearing in a few days and by a few weeks I felt and continue to feel much better.

I'm not saying the pig thyroid is making me feel 100% perfect and not sure if it ever will.

But I feel much, much better on it than the synthetic.

It might be worth a try for you and should be an option for everyone who's tried and suffers from symptoms or side effects on synthetics.
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Lovlkn
I have seen 2 new endos and 3 new GP's since my surgery and the GP's were clueless and the endo just wanted to wait and relied heavily on the TSH.
Click to expand...
Interesting - I saw the same amount post TT before finding my current doctor.

I had absolutely no luck with endo's as all they focused on was TSH.

I agree that your FT-3 is way too low.

Please answer the question regarding when you took your levothyroxine in relation to your lab results.

If you are in the USA, you can order your own labs - just to see where you are at if the doctor will not.

http://www.healthcheckusa.com/thyroid-tests/panels/complete-thyroid-function-panel.aspx
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T
Thanks for the responses. I will keep desiccated as an option, but will probably try the synthetics for at least a couple months before doing so to see if I can convert T3 or maybe adding some T3 to see how I do, I am curious tho creepingdeath, what desiccated brand do you take? and is it prescribed to you by your doc?

So I started my does of 112 Levoxyl 3 days after surgery and have taken it ever since. so these labs reflect only 15 days on this Levoxyl dose.

Thanks for the lab info, but I have insurance and blood work covered at 100%, so its kinda pointless for me to pay out of my own pocket. Guess I just have to find a doc who will order them lol.

Any suggestions on how to find a GP that knows what the hell they are talking about lol? When I call and make appointments I ask if they do thyroid and they say yes?? Any other screening questions I could ask the receptionist to verify the doc actually knows what they are doing?

So my FT3 is very low? how do I know this and how do I find my ranges? From what I did I see my FT3 percent range is 0.125 so does that mean it is 13% of range?

What is the difference between Triiodothyronine and T3 in blood tests?
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Lovlkn
You forgot to answer one very important question...

Did you take your levothyroxine prior to your lab draw?

How many hours from your last levothyroxine dosage.
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creepingdeath
[quote "thyguy" ]

Thanks for the responses. I will keep desiccated as an option, but will probably try the synthetics for at least a couple months before doing so to see if I can convert T3 or maybe adding some T3 to see how I do, I am curious tho creepingdeath, what desiccated brand do you take? and is it prescribed to you by your doc?

___________________________________________________________________________

I take Armour Thyroid.
My Primary Doc. prescribes it to me.
I went through one primary and one Endo before I lucked out finding this new PCP.
It's hard to find a doctor who will prescribe it.
You have to be patient and stand your ground till you find a doctor who will listen to you and treat you like a human not like numbers "lab ranges".

"good luck"
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T
Yes I did take my dose prior to the labs. I take it first thing in the morning around 9 am and had labs drawn about 5 pm that day. I will be getting new labs done in two weeks.
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Lovlkn
thyguy said:
Yes I did take my dose prior to the labs. I take it first thing in the morning around 9 am and had labs drawn about 5 pm that day. I will be getting new labs done in two weeks.
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Then I would not expect your labs to have been impacted by taking it in the morning since your labs were late afternoon. - opinions from anyone else welcome.

I have always taken my last levothyroxine 24 or more hours prior to my draw.

Your labs point toward poor conversion.

149 lbs = 67kg x 1.7 = 113.9mcg of replacement based on Synthroid manufacturer recommended dosage.

Again, I digress to my situation... Post TT, I required 125mcg based on my weight. I was a horrible converter and eventually got to a 125mcg Levothyroxine dose and 12.5mcg of Cytomel, definitely alot more than manufacturer recommended dosage, but what my body needs to function. Everyone is different, keep an open mind about the addition of T3.

FT3 2.1 range- 1.8-4.2 (3.0 -3.6) = 1/2-3/4 of range You are clearly under medicated or under converting or both.

FT4 1.68 range- 0.30-1.90 (you need to check your range this looks a bit funky)

Triiodothyronine 0.60 range- 0.70-1.70 I feel this lab is more general, although low usually means low FT-3.

TSH 1.49 range- .0.34-4.82 disregard.
Click to expand...
Hang in there! It will get better,
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T
Thanks for the replies. Seriously THANKS :)

So how do I know my percent of FT3 just for future reference? and you want to be at least 50% and what most people feel good on is like 75% of range correct?

what do I do to calculate the percent range again? what I am getting for this lab is 13% of range??

I am definitely open to taking T3 come next labs if I am not converting. The problem is no endo except the one has said they will prescribe T3 and even then they sounded very doubtful. One even said it was a myth lol.

My last FT3 before my thyroid was taken out was on the low end. it was 2.9 (range 2.3-4.2)

so my question now is was my thyroid to suppressed on my methimazol prior to TT?

and my other BURNING question is, will a low T3 cause my symptoms of heart palps increased anxiety and internal shaking feeling etc. ??

Thanks a ton for the info
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Lovlkn
Figuring %. I take the high range and subtract low range then devide by 4. Multiply that number by 2 and add low range. There you have the 50% of range. Add the result of deviding 1 more time to the 50% range and you have 75% of range.

I had a GP prescribe my Cytomel. Endos in my experience are horrible with post TT dosing of replacement. They all seem to be completely focused on TSH which is insane considering they are suppose to be the experts in The field.

"and my other BURNING question is, will a low T3 cause my symptoms of heart palps increased anxiety and internal shaking feeling etc. ??"

In your case it might just be that. I have those symptoms with high Ft-4 or high Ft-3.

Adding a trial of Cytomel would let you know for sure. Have you ever had a reverse T3 run?
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jenny v
Adrenal problems can also cause heart palps, anxiety and internal shaking. Have you ever done a saliva cortisol test? Sometimes when we're hypo and everything in the body slows down, the adrenal glands try to overcompensate for that by pumping out more adrenaline.
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T
I actually had adrenal tested today, but not the saliva the fasting cortisol 8am test along with some other adrenal tests and they were all blood work.

Lovlkn, I have never had a reverse T3, so I am going to ask they check this as well next labs I get. What will that show exactly?

Yeah I have seen at least 7 endos and basically all only focused on TSH. Seriously what the hell is wrong with them?? especially post TT
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T
Wanted to come back and update..

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 shit" 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
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joplin1975
You are DEFINITELY hypo based upon that free t3. Can you remind me...have they re-run TSI since the surgery?
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T
No TSI since surgery.

so yeah the naturopath's PA suggestion about lowering my dose to only taking 125mg once every other day concerns me. He said that my heart may have been revved up for to long which is why I should lower based on my symptoms??
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joplin1975
Yeah, I wouldn't like that suggestion. I'm not entirely sure what to suggest, but cutting your dose completely in half doesn't seem like the right answer either.

You've only been on Levoxyl since surgery, yes?
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T
Yes just Levoxyl. First 112mg for 6 weeks, now 125mg for about 3.
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B
Hey thyguy so how's it going since you decreased your dose of t4 added the T3 ?? are you still getting the heart palpitations and anxiety ? hope everything is doing better let us know !! hugs3
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G
As far as my symptoms I still havepretty much everything but it is improving slightly. I am not sure if it the Prozac I started taking on 7/12/16 or from my thyroid levels improving. But my levels have only improved slightly. And my RT3 is still high.

So I am on 88mg of Levoxyl and 5mg T3 twice daily (started these doses like 7/18/16)

My recent thyroid labs for the past two months:

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)

(125mc Levoxyl at this time, took 12 hours prior to blood draw)

8-5-16

Was on 88mc Levoxyl and 5mc T3 twice daily

took t4 and t3 morning dose at 6:50am blood draw at- 3:45pm

TSH - 1.17 (range 0.40-4.50)

FT3 - 2.8 (range 2.3-4.2)

FT4 - 1.3 (range 0.8-1.8

Reverse T3 - 30 (range 8-25)

TSI - <89 (range <140 % baseline)

THYROID PEROXIDASE ANTIBODIES - 1 (range <9 IU/mL)
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