High TGA right now. Had thyroid obliterated 11 yrs ago due to Graves

[overthetop123]

Can anyone pinpoint why my thyroglobulin antibodies are very high? I feel as if something is attacking my throat. Thank you so much

[PurpleNails Administrator]

Did you have Radioactive Iodine? Or surgery? 

Antibodies often increase particularly after RAI treatment.  

The partial destruction from the treatment causes thyroid cells to release thyroglobulin protein & TGab are the antibodies cleaning up the substance which isn’t usually outside the thyroid.  

If there’s residual thyroid after surgery & autoimmune attacks cause damage the remaining thyroid cells this will also cause a rise.  

11 years is a particularly long length of time for TGab to still be rising.  

TGab is rarely tested beyond diagnosis.  Do you have regular TGab to compare? 

Was either TSI (Thyroid-Stimulating Immunoglobulin) or TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies) tested when diagnosed? These would have confired Graves.

TGab is a marker for autoimmune but is more associated with thyroiditis (Hashimoto’s) and not unique to Graves.  Same with TPOab (Thyroid Peroxidase antibodies)

Do you take a replacement?  Has this altered eg decreased.  How much do you take?

Do you have recent TSH, FT4 & FT3 levels. (With lab range) 

[overthetop123 in reply to PurpleNails]

Thanks for replying. Yes I had ablation not obliterated! lol I take 75mcgms but my past history is very Skewed....yo yoing for ages following RAI. I go too high on 75mcgms and on 50 I am too low, I have tried alternating the dose to 75-50 every other day but it still yo yo's.

[PurpleNails Administrator in reply to overthetop123]

sounds like doctors are going by TSH. when it should be by FT4 & FT3. 50mcg a starter dose, you may have some thyroid function remaining causing levels to fluctuate. But my guess would be levels are too low.

What is TSH, most feel well if below 1 (or the bottom of range) this means FT4 is high in range and if conversion adequate FT3 at least half way through range.

High cholesterol can be a sign of low FT3.

[overthetop123 in reply to PurpleNails]

So high cholesterol is connected to low t3? omg!

[pennyannie]

Hello overthetop and welcome to the forum ;

Graves is an autoimmune disease that waxes and wanes throughout one's life and for which there is no cure and generally considered to be driven by stress and anxiety.

I'm presuming by your using the word " obliterated " you are referring to RAI thyroid ablation.?

As I understand things the dose of RAI is not as exacting as one might think and since RAI is a slow burn it can take time to fully render the thyroid gland totally disabled.

I can't add much more to what has already been written as we need more information but you might like to read of the most recent research and a sorce for further research on this poorly understood and badly treated auto immune disease.

elaine-moore.com for all things Graves and AI :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[overthetop123 in reply to pennyannie]

Hello pennyannie. Thank you for responding. I am a female 68 yrs old and was diagnosed with Graves disease through an endocrinologist in 2011. I was prescribed carbimazole but I had agranularcytosis confirmed by blood test from this drug and it was immediately stopped. Cut 2/. RAI was given due to side effects of Carbimazole. Following 4 weeks later I went into Thyroid Storm ( once again diagnosed by Blood test. I started feeling very breathless and generally unwell about 4 weeks ago. No strength. Hands and body trembling and noticed that my throat felt as if someone had put their hands aroumd it! Never had this before. Cut 3/. Went to see a Naturopath who drew bloods. My thyroid panel showed that my T3 was too low at 2.7 ( norm 3.1-6.8) but everything else normal apart from a very high Thyroglobulin antibody count of 588.0. ( normal range 0-115) I originally thought that it was my high blood pressure causing it. My bp is now back to normal but this feeling in my throat remains a constant. I am as weak as a kitten. My cholesterol is also very high at 9.3 ( optimum 5.0) TY Lynne x

[pennyannie]

What thyroid hormone replacement are you taking and can you please give us a T4 reading / range alongside this T3 reading :

I started becoming poorly around 8 years post RAI thyroid ablation in around 2013/14 when aged 65 after my doctor dropped my T4 from 125 mcg to 100 mcg a day because my TSH was suppressed at 0.01.and after a couple of years of doctor's shrugged shoulders and the addition of anti depressants on my prescription I found this forum.

My dentist was the only one who mentioned I should go to the hospital and then spent 2 years going around various O/P departments with no concrete answers as to my ill health but I did get a ferritin of 22 flagged as maybe being an issue - full details on my profile page.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 T2 and calcitonin plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

T4 - Levothyroxine is a storage hormone that needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.

Your own ability to convert T4 into T3 can be compromised by non optimal ferritin, folate, B12 and vitamin D, inflammation, antibodies, and any physiological stress ( emotional or physical ) depression, dieting and ageing can all impact and down regulate T4 to T3 conversion.

I was refused both T3 and Natural Desiccated Thyroid by my surgery and hospital in early 2018 and then decided to decided to self medicate.

I have been on NDT for the past 5 years as I found this treatment option suits me best and I haven't been back to see any doctor since 2018 and much improved.

Some people can get by on T4 only :

Some people find that T4 seems to stop working for them at some point in time and find by adding in a little T3 - Liothyronine alongside their T4 they feel better :

Some people can't tolerate T4 and need to take T3 only :

Whilst others feel their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

I have no idea why your antibodies were so raised, just as I had no idea why I became so ill - but i blame it on RAI thyroid ablation as the hospital refused to confirm or deny my suspicions.

elaine-moore.com runs a forum much like here - maybe ask the question there as that is where I managed to learn of much of my own situation as I tried to stick myself together again like Humpty Dumpty.

[overthetop123 in reply to pennyannie]

Ty for your reply. In uk they (nhs) only prescribe Levo Thyroxin. They also do not take full thyroid panels. They only check the TSH and they draw their conclusions on this alone. That is why I went for a consult with Naturopath who drew blood, That is how I know my Tga is high.

[pennyannie in reply to overthetop123]

The NHS does prescribe both T3 and NDT and up until around 20 years ago both these vital treatment options were in the the primary care doctors tool box - now you need to be assessed by an endocrinologist and it is not necessarily on medical need but by CCG/ICB financial constraint.

I'm not disagreeing with you :

Where do you live - there is nothing on your profile ?

High cholesterol is a symptom of hypothyroidism - and you must not be dosed on your TSH but on Free T3 and Free T4 levels - do you have any results there to share?

[overthetop123 in reply to pennyannie]

Yes . Here is my thyroid panel- TSH= 0,88 (0.27 - 4.2). FREE T3 = 2.7 (3.1- 6.8). T4=142 (59-154). TGA 588,0 (0-115). Ferririn 37 ( 13 - 150) Fasting cholesterol 9.3 (opt 5.0 ).

[pennyannie in reply to overthetop123]

Is that Total or Free T4 ?

Ok your T3 is under range and that is leads to all sorts of problems as it is T3 that the body runs on - not T4 :

You would appear to be not converting your T4 into T3 - the active hormone :

Your ferritin is not high enough in the range to assist you in converting T4 into T3 :

Everywhere I researched suggested ferritin needs to be over 70 for any thyroid hormone replacement to work well and I now find I feel at my best with a ferritin at around 100 :

We also need optimal levels of vitamin D, B12 and folate - i now aim for a folate at around 20 : B12 active 75 ++ and vitamin D at 100 : ( ranges differ but you need to be thinking at least 50% through and likely more like 75% - just read around ) :

So, your ferritin and your high antibodies will have contributed to this poor T3 result - and as detailed above there are other contributing factors, results of which we haven't got - so can't say what else is is going on.

RAI is known to trash vitamins and minerals and low vitamins and minerals down regulate T4 to T3 conversion, as does inflammation and antibody interaction -

Is it at all possible that you are now dealing with your thyroid totally breaking down due to the RAI thyroid ablation and this is what is causing the pain and the high TGA antibodies recently found in your blood ?

[overthetop123 in reply to pennyannie]

Do you know how long it takes to totally ablate following RAI?? I am 11yrs post RAI ? Not sure about time frame

[PurpleNails Administrator in reply to overthetop123]

Doctors say thyroid ablation usually takes up to 6 months but it is acknowledged it can take years to take full affect.

It’s impossible to answer because It depends on your dose level and how your body deals with it.  

Some are hypothyroid within weeks whereas other take much longer. 

 I’ve read many accounts on here that initially patients are told their thyroid is now normal but many years later are told they have become hypothyroid.  

That may be due to insufficient testing & TSH not reflecting low levels or the “ablative” action may genuinely be very slow.

Stateside radiation doses are calculated by by prior uptake scan but the level is said to be extremely inaccurate and to prevent repeat treatment “extra” is often given.

In UK fixed doses are given (1 size fits all) and this is because it’s said there is little benefit in calculating a dose.  The cost of the scan is not cost effective as the level of accurate is only slightly improved.

[overthetop123 in reply to PurpleNails]

Thanks for your input 👍

[pennyannie in reply to overthetop123]

I don't think anybody knows - just as nobody ' knows ' the full consequences of this toxic substance on the whole body - though we do know it is taken up, to a lesser extent, by other glands and organs in the body - elaine-moore.com

Is it a coincidence that the research I detail was conducted at 8-10 years post RAI thyroid ablation ?

ncbi.nlm.mih.gov/pubmed/306...

It seems a very grey area - I had no help nor understanding from mainstream medical with what happened to me - you maybe more fortunate - did you have the RAI as a liquid or tablet ?

[overthetop123 in reply to pennyannie]

It was a very large capsule that they gave me.

[pennyannie in reply to overthetop123]

Oh, I had a can similar in size to a coke tin covered in yellow/ back alert sticky tape.

It was pushed towards with a metal grabber - and a man dressed in what looked like space suit advised me to pick a straw from a box on the table and told to drink down the contents of can :

Surreal experience and there you go !!

[overthetop123 in reply to pennyannie]

Exactly the same thing happened to me,

[pennyannie in reply to overthetop123]

Oh !! Major Tom is needed - even for the tablet - nothing like the pictures portrayed showing how easy and safe this little tablet is !!