# Close to normal levels but my symptomatic than ever??



## thyguy (Mar 31, 2016)

I was DX Graves disease April 2015 and was put on Methimizole. My thyroid levels have been within range for the past 6-7 months with methimizol. I have been on it for a year and my levels are now normal, (actually a little hypo right now I think) and I am now feeling more hyper than ever. Super strong heart palpitations racing heart extreme anxiety with racing thoughts etc. Sometimes if my heart rate gets to high I pretty much shake.

My current labs from 4/1/2016

TSH W/REFLEX TO FT4 - 5.67, range 0.40-4.50

FREE T4 - 1.3, Range 0.8-1.8

FREE T3 - 2.9, Range 2.3-4.2

What I do not understand is how I can feel so hyper when my levels are normalized?

I am working with a cardiologist to make sure it is not my heart and thus far has found nothing wrong with my heart.

I was stable on 10mc of meth for the past couple months and then crept up hyper barley and then was put on 15mc meth one day and then 10mc the next to equal out to 12.5mc. was on this for about 5 weeks and have now went a little hypo. which has lead me to opt for a total TT because I simply cannot function and am basically house-ridden

Any input would be MUCH Appreciated Thanks


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## joplin1975 (Jul 21, 2011)

You are hypo! Symptoms cross over - so while you feel hyper, those are actually symptoms of hypo. Clear as mud, right???

I don't know about dosing anti-thyroid meds, but maybe going back to 10 would be good?


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## creepingdeath (Apr 6, 2014)

Did you have those hyper symptoms when you had the blood drawn for these labs?

"Remember" Lab work is just a snapshot in time.

You can get heart palpitations when Hypo also.


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## WhatHappened (Nov 12, 2015)

when's your TT btw?


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## Lovlkn (Dec 20, 2009)

Having a TT with Graves might just be the best decision you make. I for one fought it for 4.5 years while taking Tapazole. Wish I had had my TT sooner.

Be sure to choose a surgeon that does 4-5 thyroid surgeries weekly - experience counts.


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## thyguy (Mar 31, 2016)

joplin1975 said:


> You are hypo! Symptoms cross over - so while you feel hyper, those are actually symptoms of hypo. Clear as mud, right???
> 
> I don't know about dosing anti-thyroid meds, but maybe going back to 10 would be good?


Huh well yeah did not think these were hypo symptoms?? and if I am hypo it is just barley I guess right? I thought hypo was just the opposite symptoms?

Yes I have this week decreased to 10mc of Methimazole.


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## thyguy (Mar 31, 2016)

creepingdeath said:


> Did you have those hyper symptoms when you had the blood drawn for these labs?
> 
> "Remember" Lab work is just a snapshot in time.
> 
> You can get heart palpitations when Hypo also.


Yes I have had these symptoms every day and yes especially on that day I remember.


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## thyguy (Mar 31, 2016)

Lovlkn said:


> Having a TT with Graves might just be the best decision you make. I for one fought it for 4.5 years while taking Tapazole. Wish I had had my TT sooner.
> 
> Be sure to choose a surgeon that does 4-5 thyroid surgeries weekly - experience counts.


Thank you all for the responses everyone! I am scheduled for TT on 4/21/16

Yes regardless I think TT is the way to go as well. I do not want to take methimazole for years. I wonder if methimazole could also cause any of these symptoms?

and wow almost 5 years, that is a LONG time. My surgeon does about that and I believe performs the most in my state.

So if I can feel hyper while being hypo, will having a TT help in that effect?

I have tried some calcium channel blockers that did not do anything as far as helping and only gave me more side effects and have tried a beta blocker and gave me super fatigue. I may try another brand of beta blocker or some other type of med that can help slow my heart.


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## WhatHappened (Nov 12, 2015)

You will swap your current meds for a T4 med like Levothyroxine (Synthroid) and possible a T3 med like cytomel if necessary to help bring your labs and well-being in line. I don't want to be a downer, but either way you will be taking something for the rest of your life. But based on some of the feedback I have seen in the forum, getting and staying well feeling seems to be easier after the TT. (read lovlkn's signature, you will see she is on both a T4 and T3 med).

Symptoms are symptoms. My own unscientific feeling at this stage is not to get too experimental until you get your blood work straight and dosages set (the whole shooting at a moving target thing).

And to quote Joplin, about the only thing not clear as mud about this disease is you need to track and keep your bloodwork and labs, see what your TSH and Free T4 are as a bare minimum and how you are feeling when your labs get drawn.


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## Lovlkn (Dec 20, 2009)

Regarding anxiety.

I had anxiety while taking Tapazole and most definitely when my thyroid hormones were moving from hyper to hypo and pretty much the whole time I took Tapazole. Early in my Graves treatment I told my doctor my chest was feeling really tight and I could feel my heart beat. She prescribed Lorazapam.

I took lorazapam in small doses when my chest would get tight - Post surgery I specifically remember in recovery - the anxiety was completely gone. Mind you - I just woke from a 1.5 hour surgery and was pretty drugged up. I just remember how calm I felt. Going into the hospital and waiting to be rolled back I was a wreck - told the nurse and she gave me an injection of some chill juice.

Take advantage of the med's available to you - I took a lorazapam the night before my surgery - being wired was an understatement - I was also hypo.


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## thyguy (Mar 31, 2016)

Thank you for all the responses and help!

lovlkn - do you still have anxeity? And do you have a low TSH when you feel your best? Do you even look at your TSH? Do you feel bad when TSH moves?

Like right now my FT3 and FT4 is about the same for the last 4 months, but I feel the worst this last month and the only thing I can think of is my TSH is moving making me feel horrible? Maybe the inflammation of graves on my thyroid itself causes symptoms? Maybe the Meth? Maybe all the above.. not really sure. Just frustrating trying to put my finger on it


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## Lovlkn (Dec 20, 2009)

thyguy said:


> lovlkn - do you still have anxeity? And do you have a low TSH when you feel your best? Do you even look at your TSH? Do you feel bad when TSH moves?
> 
> Like right now my FT3 and FT4 is about the same for the last 4 months, but I feel the worst this last month and the only thing I can think of is my TSH is moving making me feel horrible? Maybe the inflammation of graves on my thyroid itself causes symptoms? Maybe the Meth? Maybe all the above.. not really sure. Just frustrating trying to put my finger on it


What you feel with Graves and on Tapazole is not a thing you can put a finger on.

If you saw my pre op labs it would blow your mind - trust me - there is no finger one can put on.

Post surgery the key is finding a doctor who will test both FT-4 and FT-3 and dose from those labs and not TSH. That is the hardest part post op for most - finding that doctor.

Anxiety - Not the chest tightening type. I do tend to get a bit anxious occasionally but I am a type A personality who can be a bit intense at times.

TSH is not a concern of mine or my doctor. FT-4 and FT-3 are key to dialing in to proper thyroid levels.

My TSH stays at the bottom of range post TT and on my current medication mix. I don't feel TSH, I feel FT-3 mostly and occasionally FT-4 if it gets to top range.

In my opinion, any movement of thyroid hormone can cause anxiety.

You will have completely different labs post op without a thyroid.


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## thyguy (Mar 31, 2016)

Thanks all for responding and yes having a TT on April 21st. Thank you for all the info on here this has been great!

Lovlkn, I am Very type A personality as well and thanks for sharing.

Saw my endo today, she says we will start the replacement 112 T4, 4 days after my total TT. Then I will have to wait 6 weeks on this 112 before we test labs again. Is this right or should I be testing my labs sooner?

What is the minimum amount of time you guys wait until making a dose change? And testing new labs? Is there a good rule of thumb on what time a new dose takes to kick in?

And you can exercise and do all the stuff you could before a total TT right? Obviously not right after, I mean like a couple months after.


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## Lovlkn (Dec 20, 2009)

> Saw my endo today, she says we will start the replacement 112 T4, 4 days after my total TT. Then I will have to wait 6 weeks on this 112 before we test labs again. Is this right or should I be testing my labs sooner?


 Manufacturer recommended dose is 1.7mcg per kilogram of weight.

112 is the dose for a 145lb person. Are you close to that weight?

If you are symptomatic of being hypo - after 4 weeks a lab would give a good indication of where you are. Six weeks is best but if you are suffering push for a 4 week lab. Also - insist they run FT-4 and FT-3 at every lab.

You can exercise once the incision is healed - I believe 2 weeks is the no heavy lifting part, although it may be longer - ask your surgeon.

If you have not already have your Vitamin D and B-12 run you might request as both contribute to fatigue and anesthesia and the surgery do as well so easy to rule out that cause or being under medicated.

I began replacement day 3 post op - fill your prescription and have it on hand in case you wake one morning and feel glued to the floor - that is an indication you should call your doc and ask to start sooner than 4 days post op. My thyroid hormone spill burned off after the first 48 hours - I was hypo going into surgery.

Oh - and stay ahead of the pain post op - take all meds offered in the hospital and by day 2 or 3 you should be able to tolerate discomfort with 600mg of Ibuprofen every 6 hours if you want off the narcotics. And keep a ice/cool pack on the incision the first few days to help with swelling and it feels oh so good.

Keep us updated.


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## joplin1975 (Jul 21, 2011)

You can exercise. There's a two week heavy lifting restriction, as Lovlkn mentioned, but after that, you can do whatever. We re-roofed our house 11 days post-op.

Waiting six weeks before dose changes is really important. When i was crazy hypo (TSH of 121), we did blood work every four weeks, but that was an exceptional case. If you change meds too often, it makes tracking labs and symptoms much harder.


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## thyguy (Mar 31, 2016)

Thought I would come back and update and thanks for all the help. I would not have been so comfortable about everything without coming here. Ok so went through with the surgery on APR 21st 2016 was sore for about 5 days and the incision is still sore. Surgery went ok and had my post op visit. Guess they took one of my parathyroid 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 17 days post surgery I still 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 it will make my heart thump so hard, not super fast just very strong palpitations. I am also getting this internal weakness 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 had a wedding yesterday 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. 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, but they tested my thyroid and found hashimotos? So I guess I had Graves (confirmed with nuclear imaging test) and I also have hashimotos? I am still waiting for my endo to get back to me on these results, so not 100% sure on that. Still with the thought of even the smallest bit of cancer inside me I am glad I got it out. 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.

Once again, any thoughts from all you excellent people would be great thanks J


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## Lovlkn (Dec 20, 2009)

Test at 4 weeks. It will give a good enough result to know if you are over or under medicated. I've done testing at 4 weeks several times due to being symptomatic. A heart rate of 150 is NOT normal if you are properly Medicated.

If you are in the US you can order the test yourself at Healthone labs.

Post op insist they run both FT- 4 and FT -3.


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