Decisions! Surgery Dilemma - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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Decisions! Surgery Dilemma


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#1 Tunz

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Posted 30 December 2021 - 09:46 AM

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Hi everyone,

 

It's been just over 3 years since I've been diagnosed with Graves Disease, and a bumpy journey it's been!

 

After my first taper down of Carbimazole it wasn't long after dropping to 5mg EOD that I relapsed. My endocrinologist in the NHS said now it's happened once it's pretty much guaranteed it would happen again and again, even more so being male. 

 

I've been on 10mg now for almost a year since that and my levels are 'within range', I am still testing positive for Graves antibodies, though.

 

There is currently at least a one year wait for surgery (total thyroidectomy) in the NHS so I am on that waiting list, as if I have to take definitive action at some point in the next decade I'm more in the mind to just get it done, rather than have all of the ups and downs. 

 

Even though I'm 'within healthy range', I still have some symptoms going on that weren't present before which I'm really not keen on! Mainly lack of patience, irritability, low - non existent sex drive, fatigue, anxiety. Not all of these symptoms all of the time, but definitely still very present and not an issue before.

 

I guess my dream scenario is I have the surgery and all of these symptoms go and it's happily ever after - but after reading some stories of post surgery I'm realistic to the fact that this may not happen. 

 

I wonder if I should be doing more now to see if I can eradicate these symptoms and leave surgery as long as possible, or whether people agree it is the best thing to proceed with and I should at least see some decent improvements. 

 

In terms of what I'm currently doing to improve my symptoms, this includes; getting good sleep (as much as I can with a baby!), exercising regularly, eating healthily, taking Vit D, Magnesium, Cod Liver Oil etc, trying to keep stress low (again not easy when self employed through COVID and having a lively child). 

 

If anyone could share any experiences, tips, or words of wisdom I would be really grateful :)

I'm just worried about pushing for surgery and I end up feeling no better or worse.

 

Thank you!

 




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#2 mmztcass

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Posted 31 December 2021 - 11:26 AM

Hello Tunz:

 

If you could post several months worth of labs along with the antibodies and the reference ranges, we can see a better picture of how things are going.  I am assuming you are now back to dosing daily rather than EOD?  I find that the thyroid does better with steady daily dosing than doing it as EOD.    

 

As shown down below in my signature, I have had GD since 2000, several months after the birth of my last child.  I went through many ups and downs with the triggers and trying different vitamins.  Many of the vitamins and supplements were synthetic.  More of my A HA moments were was once I stopped the synthetics and began taking whole food/plant based vitamins and supplements to avoid the triggers I'd experienced from the inactive ingredients in the synthetics.  Together with using a healthier diet and better personal and household products.  I am approaching 2 years in remission.

 

Persistent and patience are the keys that I have had to use for the past over 20+ years.  The amount of triggers I have had has been unbelievable a lot to wade through.  Through it all I have kept my thyroid.

 

It takes much researching and see what works the best for people with thyroid issues for what will help them.

 

Happy New Year!  



#3 Tunz

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Posted 31 December 2021 - 02:30 PM

Hello!

Thank you very much for replying.

Here are most of my previous results I can find;

9/10/18: TSH <0.02, ft4 53.8, ft3 20.7

24/10/18: TSH <0.02, ft4 69.2, ft3 20.7 (40mg CBZ)24/10/18: TPO antibodies 144 - POSITIVE

16/1/19: TSH <0.02, ft4 21, ft3 7.4

14/2/19: TSH <0.02, ft4 9.4, ft3 4.7 (30mg CBZ)

14/2/19: TPO antibodies 58.3 - POSITIVE

30/5/19: TSH 10, ft4 10.3, ft3 4 (10mg CBZ)

4/7/19: TSH 4.91, ft4 13.7, ft3 4.7

15/8/19: TSH 2.91, ft4 17.8 ft3 4.7

30/12/19: TSH 1.26 ft4 18.8 ft3 4.4

28/5/20: TSH 3.19 ft4 19.7 ft3 4.4

2/10/20: TSH 3.32 (0.27-4.2) ft4 15.2 (12-22)

23/10/20: TSH 2.82 (0.27-4.2) ft4 16.7 (12-22)

21/12/20: TSH 1.70 (0.27-4.2) ft4 16.6 (12-22)

30/6/21: TSH 1.22 (0.27-4.2) ft4 16.1 (12-22) ft3 4.3 (3.10-6.80)

22/9/21: TSH 2.92 (0.27-4.2) ft4 15.3 (12-22)

10/11/21: TSH 2.72 (0.27-4.2) ft4 16.1 (12-22)

20/12/21: TSH 3.55 (0.27-4.2) ft4 17.7 (12-22)

Sorry for information overload! Not sure if it'll help show the bigger picture. This is pretty much all I have. I'm on 10mg Carbimazole a day at the moment. Sometime towards end of 2019 / early 2020 I relapsed and went back up to 40mg briefly, before ending up where I am now.

It's taken me to type this out to realise ft3 was only tested in the earlier days.

I'll have latest update on graves antibodies next week.

Very hard for me to know whether I'm in a good place with these results or not, not long ago I was sure I would head down the surgery route hoping that could be the end of it all, but I appreciate its not that simple!

Thanks and happy new year!

#4 mmztcass

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Posted 31 December 2021 - 06:37 PM

Hi:
 
Thanks for posting the labs.  Very helpful.  
 
Has the TSI and/or the TRAbs ever been done for the Graves' Disease?  The TPOab test is used for the Hashimoto's Thyroiditis rather than Graves' Disease.  
 
Is the CBZ only being taken once per day?  I have found as others have done, is by getting my thyroid labs at more optimal ranges that taking the ATD (antithyroid drug) into divided doses of two to three times a day, works better than an once daily dosing. 
 
Also getting the FT4 at the upper third range and having the FT3 at mid range seems to work the best for many of us to avoid hypO and hypER symptoms.  
 
Thanks and {{{hugs}}} 


#5 Tunz

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Posted 01 January 2022 - 07:33 AM

Hello again!

I found some more info on the more recent tests and my TRabs info, so you will see they've only been tested on 14/2/19 and 2/10/20. Aside from 2 weeks ago, of which no results yet:
 

14/2/19 TSH receptor antibodies – 58.3 iU/L – positive. End of RX. 2/10/20 - 2.3 IU/L – positive

2/10/20 – TSH receptor antibodies 2.0 IU/L – positive

4/1/21 – TSH 1.70, T4 16.6, T3 ??

10/2/21 – TSH 0.09, T4 26.1, T3 ??

17/3/21 – “Whilst taking CBZ for 5mg twice weekly from 10/2/21 your thyroid test has worsened with TSH now fully suppressed at below 0.02 mIU/L, T4 36.6 and T3 10.1. Please increase to 20mg CBZ p/day

16/4/21 - Increased CBZ from 20mg to 40mg p/day (post relapse, don’t have results for this date)

4/5/21 – Test showed TSH below 0.02 mIU/L, ft4 25.9 pmol/L and ft3 6.9 pmol/L. Was told to stay on 40mg CBZ for 1 week then drop to 20mg CBZ p/day.

3/6/21 – Dropped to 10mg CBZ p/day (no results shared with me)

7/7/21 – No results shared but was told I was ‘stable’ and to stay at 10mg CBZ p/day

16/8/21 – TSH 1.6 mIU/L on 10mg, was told to stay on this

20/12/21 – As well as Thyroid check results for Total 25-Hydroxy Vit D were 69 nmol/L

And yes my 10mg is per day. Anything that jumps out at you here? 

Thanks again, very much! 



#6 mmztcass

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Posted 01 January 2022 - 01:57 PM

Hi Tunz:

 

I would want to keep a small journal of the things I was exposed to such as in diet (toxins and perservatives, etc.) and the environment (chemicals in the air, what are used in the household and personal products, etc.).  By pinpointing and looking for the triggers, the thyroid can begin to settle down.

 

I honestly think that with all the things we are exposed to in this world can make it a challenge for the thyroid to filter out and be as balanced as possible.  

 

I would begin taking my CBZ doses into two or three times a day to keep my Free Ts more balance and not jump around.  Many years ago I didn't do well with just once a day dosing, my thyroid levels wouldn't budge.  When I began dividing to take as three times a day after trying twice a day, my Free Ts did much better as well as the antibodies.  I was able to keep my FT3 at mid range with the FT4 at the upper third range and take the lowest possible dose of the MMI (Methimazole) of 3.75 mg for many years before I could go to 2.5 mg, then 1.25 mg, to 0.625 mg before trying for remission.    

 

Doesn't the UK health system offer the TSI (Thyroid Stimulating Immunoglobulins) antibodies test?  This test is very important for the Graves' Disease.

 

Also do not allow doctors to adjust the CBZ according to the low TSH ranges.  It must be adjusted to the Free T4 as it works with it. 

 

At your last test dated on 20/12/21 I'd be wanting to have the CBZ adjusted to have the FT4 at around 20.  I'd be wanting to use a pill cutter to adjust it to 3.75 mg to allow the FT4 to come up a bit.  At 17.7 it is too low. 

 

{{{hugs}}} 



#7 Tunz

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Posted 02 January 2022 - 04:43 AM

That's great, thank you for the information!

I can't seem to find anywhere to get a TSI test, even privately. 

 

Just to check everything together I was going to get a private test which covers;

 

TSH
Free T4
Free T3
Thyroid Peroxidase Antibodies
TT4
Thyroglobulin Antibodies
Cortisol

Vitamin B12
Vitamin D
Folate
C Reactive Protein
Magnesium

Would you still say I need to get TSI tested if all of this is checked?

I'm also getting a coeliac test done, as I read that can be quite common and add to symptoms? 

 

Thank you :) 


 



#8 mmztcass

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Posted 02 January 2022 - 08:30 PM

Hi Tunz:

 

If UK did offer a TSI, I would definitely want to get it.  

 

The difference between the TSI and TRAb antibodies tests is that the TSI measures the positive Graves' Disease antibodies and the TRAb measures all the antibodies such as blocking and stimulating and neutral (?) antibodies into one number.  There is no telling what the stimulating portion numbers of it would be that for the Graves' Disease.

 

Celiac test is fine and yes, many people with GD do have issues with it.  

 

{{{hugs}}}



#9 Allies

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Posted 03 January 2022 - 02:40 PM

HiTunz

Medichecks (UK) seems to offer a test measuring the stimulating type of TRAB

https://medichecks.c...dies-blood-test

It's a little expensive so you might want to contact them and double check that the test only checks for the stimulating type - if so it is basically TSI, just under a different name.

It's tempting to assume that the name of the test means that it is checking for only the stimulating type of TRAB, but there's been a fair bit on confusion about the nomenclature of these antibodies and the tests for these even in the medical literature - it's enough to make one's head spin! I have to use two different laboratories if I want to check TRAB and TSI (in Australia) and both laboratories think their test is the "only" test. Not terribly reassuring since pathologists really should know this stuff!

George Kahaly and Tanja Diana explain this issue in the paper linked below:

https://www.ncbi.nlm...les/PMC5309226/

Or, more simply put, so you know what sort of questions to ask the lab:

"Differences between TRAb and TSI assays

Anti-TSH receptor antibodies comprise several types, responsible for two distinct clinical conditions. Thyroid stimulating autoantibodies (TSAb)that is, TSIare the direct cause of Graves disease, while thyroid blocking antibodies (TBAb), which inhibit TSH binding to the thyroid receptor, can cause hypothyroidism.9 Currently, there are a variety of assays on the market that measure anti-TSH receptor antibodies. The majority of TRAb assays detect both TSI and TBAb. They can be either automated or manual (ELISA, RIA). Despite efforts at standardization, some important inter-method differences still remain. Only a few available assays were designed to detect only TSI, the specific cause of GD. One is a qualitative bioassay, the other a recent quantitative automated immunoassay. The clinical sensitivities and specificities of these assays have improved over the years and are now very good, but can vary from method to method. The results among TRAb and TSI assays can sometimes be discordant. This may be due to variations in clinical sensitivity, the individual patient, and the antibody being detected: TBAb or TSI."

https://www.mlo-onli...-graves-disease

Allies
:)





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