New Labs Should I Reduce - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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New Labs Should I Reduce


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#1 Mich!

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Posted 25 March 2020 - 06:13 AM

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Hi everyone

I have received new results and i am posting them as i would like some guidance as to whether or not reduce my medication. 

My levels appear to have to have gone down fast.

 

These bloods were taken at a different pathology so therefore a different reference range.

 

I know these are extremely difficult times to say the least but if someone has sometime could they please advice me.

 

I will give some background

 

29/01/20

TSH          0.02  (0.50 - 4.00)

Free T4    29     (10 - 20)

Free T3    12.3   (2.8 - 6.8)

 

At this stage i was diagnosed with Thyrotoxicosis

I had further bloods on the

 

5/02/20  

 

TSH          0.02   (0.50 - 4:00)

Free T4    35 (10 - 20)

Free T3    15.2  (2.8 - 6.8)

 

I left to go interstate on the 5/02/20. 

I received my results on the 14/02/20 and a diagnosis of Graves Disease

On the 14/02/20 i was put on 10 mgs of Propranolol twice daily with Carbimozole 20 mgs daily pending

On the 21/02 i began Carbimazole 10 mgs twice daily.

 

I had my bloods taken on the 20/03/20 exactly 4 weeks after beginning the Carbimazole and 5 weeks after beginning the beta blocker

20/03/20

Free T4    21.7    (9.0 - 19.01)      From a different lab  

Free T3    6.8      (2.6 - 6.0)

TSH          0.01    (0.3- 4.0)

 

On the 10/03/20 I saw an Endocrinologist.

He mainly looked at my TSH and upped my beta Blocker dose from 20 mgs daily to 40 mgs daily.

On the 11/03/20 i began the 20 mgs Propranolol morning dose. 30 minutes after taking the morning dose i became incredibly tired and wanted to sleep instantly. I clawed my way through the rest of the day choosing to go back to 10 mgs twice daily when i took my evening dose. I was aware i would not be unable to function properly if i remained on 40mgs daily dose.

 

I had to see a local doctor today as i cannot travel at the moment to see my new GP. 

The local GP wants me to stay on the current dosages i am on for another 6 weeks and to get my next bloods in 6 weeks. I know i will be HyPo by this stage.

 

Corona is ramping up in the state i live in. These are uncertain times. Skype consults are yet to be set up and i feel i need to take things into my hands somewhat as i did with the increased level of B Blocker. 

 

I would like to taper off the Beta Blocker and take it as required. Currently my stress levels are high as are many peoples. The current events and Pandemic have taken me away from focusing on my Graves disease however i have continued to stay away from Gluten, dairy, soy and sugar. My diet is really really good and i feel good. I started drinking nettle tea for the pain in my ankles when i wake up. This was working well however the panic buying extended to Nettle tea  :mellow: so until i grow some.

Would it be a good idea to start to reduce? Should i start to reduce the Carbimozole?

 

I welcome your thoughts on this.

 

On another note something beautiful i did 

 

Yesterday i drove to a river that is in my region. It is close to the sea and is surrounded by beautiful beaches. I generally don't go there anymore as it is teeming with holiday makers, tourists and day trippers from interstate. It is always packed with people on paddle boards, Kayaks and various other watery sports type things.There was no one there. It was high tide, the river looked like glass and i swam in the river. I was the only one swimming in the river. I had it all to myself. Just me.

 

Mich!




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#2 mmztcass

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Posted 25 March 2020 - 12:19 PM

Hello Mich!:

 

When would the next labs be done?  Somewhere around the mid of April?  I would get them sooner (monthly) as your labs are coming down nicely (though still outside of the high end ranges), I am very glad you are choosing not to up the beta blocker dosage.  This doctor should really be looking at the Free T3 and the Free T4 test results and not the TSH!   :o

 

This is what the local GP should've have been doing if you saw him (her?) today.  Lab tests should've been ordered to see how the Free Ts are now doing to see if it is time to lower down both the beta blocker and the Carbimazole.  Definitely don't wait six weeks.  As by then going hypO on the current med doses will happen.  

 

The Corona virus is becoming pretty active in my area of the USA as well.  We do what we can during these times.      

 

I am glad you had a wonderful time at the river.

 

{{{hugs}}}



#3 felix

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Posted 25 March 2020 - 06:17 PM

Hello Mich,

 

That river experience sounds pretty amazing! Maybe you will have more opportunities to repeat it!

 

Your hormone numbers have come down very nicely, and I think they are still dropping.  I understand your concern regarding going hypo if staying on this dosage for six more weeks. If you would've tested at the six week mark since starting medication instead of the four weeks, it is very likely your levels would've been in range. If it were me, I would consider reducing the dose to 15mg (or maybe less) and retest in three to four weeks. Maybe you could get your new GP on the phone or even email and get his input?

 

It's good that you reduced your beta blocker; you may consider tapering that off by reducing the dose one week at a time; that approach worked for me with no side effects.  It is very important though to manage your stress and not give in to worry, etc. Remember, is a driver of Grave's. Times are pretty unprecedented in recent memory but you must also stay focused on your well being and health! So, more river trips!!

 

Keep us posted!  :)



#4 Mich!

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Posted 26 March 2020 - 05:35 AM

Hi again mmztcass and Felix

 

Thank you kindly for your responses. I really appreciate it.

I see my GP in 2 weeks. 

I have seen footage of the traffic jams at the border. So i have 2 weeks to prepare for being very patient.

 

I will set up alternative contact with him at the time. 

I think i will reduce Carbimazole to 15 mgs as you suggested as of tomorrow. 

How long do you think i should stay on 15 mgs?

 

Felix when you tapered the beta blocker by how many mgs did you taper?

I am thinking of tapering by 2.5 mgs every few days.

I think i am at a crucial point to begin to reduce.

 

Keep washing your hands and stay safe. 

 

Thank you again

Mich!



#5 felix

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Posted 26 March 2020 - 11:50 AM

Hello again Mich!

 

I wouldn't stay on the 15 mg too long because I think it's still a fairly high dose in the context of falling hormone levels; if, in 2 weeks when you see your GP, he is willing to test then, I think that would be good although, ideally, one should't test earlier than 3 weeks following a dose change. The decision to adjust the dose should be made following each testing and depending on the results (Free T4 and Free T3.)

 

I do agree with you that you seem to have arrived at the point where you should reduce; I think, though, you still need to establish (by regular testing) that your hormone levels are stable or dropping with each adjustment in dose; for some, as soon as they reduce, the levels shoot back up and they have to adjust the dose upward. But you do appear to be on the right trajectory!  :)

 

I was prescribed 25 mg Atenolol as a beta blocker; from the very beginning I only took half (12.5 mg); I took that regularly for almost 3 months, then I cut that in half for about 2 weeks, then half of that for another week, followed by every other day for another week - or something like that (it's been two years!) What is your heart rate? compared to before Grave's and at diagnosis? I would reduce by 5 mg per week but, if you feel more comfortable going at a slower pace, I think that's fine too.

 

Trust yourself, trust your instincts and remain confident and in control of your decision-making. 



#6 Allies

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Posted 26 March 2020 - 02:11 PM

Hi Mich!

 

Monotoring your own blood pressure and heart rate can help you to decide if, and how, to adjust beta blockers. I think the genearal rule of thumb (mentioned in past posts) is to reduce beta blockers if your heart rate regularly goes below 60. It's possible that the morning you took the 20mg dose it lowered your heart rate resulting in the tiredness you experienced. Monitoring our own blood pressure can be useful for our doctors too, as many people show higher results just because they are in a doctor's surgery (white coat syndrome) - this is rather common and many doctors like their patients to monitor themselves (and report the results) to get a better idea of blood pressure and heart rate under normal conditions.



#7 mmztcass

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Posted 26 March 2020 - 04:13 PM

Hi Mich!:

 

Please get labs in three weeks from the last labs for the Free T3 and the Free T4 (especially) to know if ready to make a dose adjustment of the Carbimazole.  Don't wait six weeks. 

 

Because the FT4 is still outside the high end of range and making the dose adjustment to take less, can drive the FT4 levels higher as the FT3 is also not at ideal place (mid range) to feel best there at.  

 

{{{hugs}}} 



#8 Mich!

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Posted 14 April 2020 - 06:10 PM

Hi everyone

 

I have new results. Tested at almost 3 weeks after last test. 

 

8/04

 

Ft4     17   (10 - 20)

ft3      5.8  (2.8 - 6.8)

 

TSH still the same

 

20/03

Ft4    21.7  (9-19) different lab

ft3      6.8    (2.6 -6)

 

 

I tested earlier than 3 weeks after the last test due to the Easter period and so i could get my results before the Easter break. I begun to feel different ie slower and calmer, and a couple of my symptoms that were hanging around had left.

 

I had a pathology request from my doctor so i could test when i felt i needed it but i could not get a tele appointment as it was the day before good Friday when the results came back and too busy at work. So i reduced my medication based on how i felt from Carbimazole 20 mgs to 15. It was a damned if you do damned if you don't moment. I figured i would rather my levels go up than down.

 

Spoke to my GP yesterday and he told me to reduce. I told him i already had and i was feeling tired and melancholic. He said i should now stay on this dose and get retested in a few weeks and that it was easy to over shoot the mark with Thyroid Hormones. 

 

I am feeling more tired than usual. I am not sure if this is because of natural seasonal changes and lifestyle changes due to the Pandemic therefore my body's natural response or it could be my hormone levels.

 

I also made some life style changes and massively reduced my hours at work. This could have something to do with my new tiredness. Less adrenaline from less of a stressful job. Now that most of my major symptoms are gone i have my energy levels to rely on. However i can't remember what it was like before Graves disease. I am so used to the manic, adrenaline driven me that this calm and slow energy feels really foreign. 

 

Did others others also feel like this?

I know this is very early days and is a matter of testing and tweaking for some time into the future however how did others know what was the optimum levels for them? 

I am not sure i like how i feel and prefer a bit of manic energy.

 

Hopefully this post will be seen and i do not have to start a new one. 

I welcome and am grateful for your expertise.

Cheers

Mich



#9 mmztcass

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Posted 14 April 2020 - 06:34 PM

Hello Mich!:

 

If you have been on the 15 mg for about three weeks, it is time for another dose reduction.  Staying at 15 will definitely go hypO.  You want to aim for the FT4 to be at the upper third range to feel best there at and you are already there.  Yay!  Maintenance dose is 5 mg or less per day.    

 

If it were me I'd be looking at going with either 10 mg or 12.5 mg per day.  

 

Whenever my doctor would tell me to reduce, I didn't let him know that I had already reduced.  I just went down at the next level of lowered ATD dosage amount from what I was told to take.  I still wasn't fast enough with reducing as I went hypO and spend the 9 months climbing out of the hypO hell. 

 

{{{hugs}}}    



#10 Mich!

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Posted 14 April 2020 - 08:14 PM

Thanks for the reply mmztcass

 

Oh dear I only reduced to 15 mgs 5 days ago. Based on how i was feeling.

 

While i am absolutely delighted with my results and planning my celebration via the introduction of some tempeh and Nori to my diet. Yay!  I do want my levels to stay where they are. I know they won't if i stay on this dose for 2 more weeks.

 

IS THERE A WAY I CAN AVOID GOING HyPo?

Is it a solid reduce every 3 weeks or can i reduce again after my current 5 days on 15mgs? And by another 5 mgs?

 

Yeah i fear like you mmztcass it will not be fast enough! Damn!

 

I was going to reduce at 5 weeks after getting my results from 4 weeks on ATD's and B Blocker but my levels were still just out of the reference ranges and i was scared they would shoot up again. 

 

I began to reduce my B Blocker but some symptoms came back.

 

So i tested again just past the 6 week mark on 20 mgs Carbimazole and 15 mgs Propranolol. I began the 15 mgs at just under the 7 week mark of being on 20 mgs. 

 

My levels have halved in just over 6 weeks!

 

This is such an individual disease and so many doctors do not know how to treat it. I was under the impression that the ATD's would not kick in till the 4 to 6 week mark yet my levels were almost within range by then and by the 6 week mark have more than halved. 

 

I can only say how grateful i am for this forum. If only i could do my own bloods when i feel the need to and get my own results and post them here or go by my feeling how good would that be! The whole test, wait for results, see doctor and reduce medication according to blood results from a week ago is fraught with going HyPo at this stage.

 

So few doctors know how to really treat this!

Thanks again 

Mich!



#11 mmztcass

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Posted 14 April 2020 - 08:30 PM

Mich!:

 

ATDs can act pretty quickly for any dose changes.  For some people it can take 2.5 weeks to three weeks to see a difference.  That's why it is suggested to get labs, the earliest, at four weeks to six weeks for each dose changes.  

 

Some people really do react this quick with the FT3 and the FT4 levels.   :)

 

For me I'd definitely would be looking at 10 mg.  

 

Unfortunately many thyroid doctors do not seem to realize this.  

 

{{{hugs}}}



#12 Mich!

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Posted 14 April 2020 - 09:47 PM

Thanks again mmztcass

 

I will begin dose reduction tomorrow morn so it is even.

 

Do you think i should taper? Like maybe 12.5 for a five day period. Then go to ten?

 

I don't wanna get back on the couch! I am still reeling from the day i increased the B blocker at the Endo's recommendation. That was brutal and if it is an indication of where i am headed i will do my best to go there kicking and screaming. 

 

In reality i have nothing to loose.

 

 

Thanks again

Mich!



#13 mmztcass

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Posted 15 April 2020 - 11:26 AM

Hi Mich!:

 

The earliest it can take is 2.5 to 3 weeks to see a difference from the dose change one does with the ATD on the next new set of labs.  The 5 days you did prior to your most recent labs with reducing from 20 mg to 15 mg will not show up.  The 20 mg ATD dose is reflective from your latest labs.

 

Definitely do the next set of labs at the four week mark so that an ATD dose reduction has time to show up.

 

I overlooked something from a previous two posts of yours about Tempeh and Nori.  Tempeh is a slightly fermented soy and Nori is seaweed loaded with Iodine.  Soy can have a negative impact on the thyroid for both hypERs and hypOs.  Most people with Graves' Disease thyroid issues do need Iodine, but usually at the amounts as Elaine Moore would say no more than 150 mcg per day to be obtained from the diet.  These two food items can be a trigger to making the Free Ts levels go up.   

 

When I was previously taking both the Methimazole and the Atenolol in the years past and was working on lowering them down according to my Free T3 and Free T4 levels, I would reduce one med at a time and wait a week to reduce the other med as not to get rebounding hypER symptoms.  Then I rechecked my labs in a few weeks to see if I was on track or if I needed to further reduce.  

 

{{{hugs}}}



#14 Mich!

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Posted 15 April 2020 - 03:40 PM

Hi mmztcass

 

Thanks for the reply.

I stopped taking the Carbimazole last night.

Not sure for how long but at least 24 hours.

I will start back up on 10 mgs. 

 

I didn't feel comfortable with how i was feeling in the last 2 days so i will see what happens with my decision.

 

I haven't had any Soy or seaweed since diagnosis.

I have been eating chick pea Tempeh.

I really wanted some soy and seaweed as a kind of a treat. Your are probs right though best to keep avoiding soy.



#15 Allies

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Posted 15 April 2020 - 03:56 PM

Hi Mich!

 

We can get private blood tests in Australia now (iMedical, there may be other providers now too) you select tests on their website, pay, they email you a lab request, which you then print out and take to one of their collection centres and get the blood drawn - results are emailed to you. For thyroid hormone tests the results are pretty fast. Paying for tests ourselves gives us a little insight into why Medicare likes to limit testing! It's not cheap.



#16 Mich!

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Posted 15 April 2020 - 06:15 PM

Hi Allies

 

Is this what you have been doing? (ordering your own tests that is)

I will look into it. Thanks



#17 Allies

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Posted 15 April 2020 - 09:12 PM

Only once, my bloods have been pretty stable over the past couple of years, so it would be a waste of money to test too often. I'm considering testing again in the next month or so - or sooner if I start feeling wonky - just to make sure it's still all okay :)



#18 mmztcass

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Posted 15 April 2020 - 09:40 PM

Allies:

 

Might I ask what is the cost to test the labs privately?  It costs me $84 USD to do the FT3, FT4, and TSH when I don't use the Medicare.

 

{{{hugs}}}



#19 Mich!

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Posted 15 April 2020 - 11:12 PM

Hi

 

Thyroid function test is $59 AUD, 37 USD

 

How often should you test TSI? That is $219 AUD!



#20 Allies

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Posted 16 April 2020 - 05:23 AM

Hi
 
Thyroid function test is $59 AUD, 37 USD
 
How often should you test TSI? That is $219 AUD!

That price is for a whole panel : D

Thyroid Function Test 4

 

$219.00

 

TSH
FT3
FT4
Thyroglobulin ab (TGab)
Thyroperoxidase ab (TPO)
Reverse T3
TSI (Thyroid Stimultating Immunoglobulin)

 

Just the TSI by itself is $62 :)







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