Really Confused About TRAb result - Anyone Any Thoughts Please

[Delgor]

Finally I have received the result of the TRAb antibody test from Medichecks and have been told the result is not suggestive of Graves Disease (0.8 iU/L). Given that my antibody test for Hashimotos was very low too, could this possibly mean that the new thyroid which has grown back might be working fairly ok by itself? Could this be the reason why I'm both hyper and hypo at the same time - reading up as much as I can but would love to hear from anyone who is far more qualified. Thank you so much.

[PurpleNails Administrator]

You can either be hyper or hypo at any one time. You can move between either state and symptoms can be very similar either end of the scale because they are so varied in the array of symptoms and severity in each individual.

TRab result. Was 0.8 the result? what was the <limit …1? In which case it’s high but technically negative, antibodies fluctuate they may have been high in past.

Given that previously had thyroidectomy how long were you hyper before surgery? Did you trial medication first? Unless you had surgery very quickly presumably you were hyper for some time before the operation.

Have you had scans documenting the regeneration of your thyroid because it’s not very common. Once the thyroid is destroyed or removed either by medical intervention or by autoimmune action it rarely regrows.

Doctors say TED only occurs with Graves & you have had diagnosis of this or unconfirmed? So although the antibodies are not high doctors would likely confirm a Graves diagnosis.

What medication are you taking? Do you have a current thyroid function test?

[Buddy195 Administrator in reply to PurpleNails]

Hi PurpleNails, Although TED is more usual with Graves, I have TED with Hashimotos, confirmed by my endo and TED specialist ophthalmologist and others on this forum have the same.

[PurpleNails Administrator in reply to Buddy195]

Most Doctor will say TED only associated with Graves. Some ophthalmology specialists do recognise patients have TPOab without TRab. Very few are never hyper. Although a patient with TED can present as under active and very occasionally euthyroid. The condition can precede, occur during and after diagnosis of “Graves”.

Trying to convince a doctor TED occurs outside of Graves & you’d likely have a battle. I have never had any raised antibodies and confirmed hyper from a toxic nodule. I’m turned away at every avenue for assessment of eye issues (GP, Endo, & emergency liaison).

Apparently I can’t possibly have TED as I don’t have any antibodies. The dry, red, misalignment & pain behind the eye are all unrelated. I hope they right, suspect they’re not.

[Buddy195 Administrator in reply to PurpleNails]

I’m also a member of TEDct and there are quite a few members of this trust who have TED with Hashimotos, confirmed via Moorfields & other leading eye centres. TEDct has a Facebook group & holds Zoom seminars, led by specialist ophthalmologists. Their advice line is also very helpful; they went out of their way to help me find a TED specialist ophthalmologist in my area.

I hope you find some answers PurpleNails; I really feel for you.

[Delgor in reply to Buddy195]

Many thanks for your input Buddy yet again - doing a private test tomorrow morning before doing the hospital one on Thursday as I really want some answers a.s.a.p. but really grateful to everyone on here for their kind support!

[Buddy195 Administrator in reply to Delgor]

Just checking you are supplementing with Selenium; really important for many in early stages of TED. I take 200mcg a day; don’t exceed as it can be toxic in larger doses. Preservative free drops like HycoSan or HyloForte are great for dry eye; use often! Look up posts by ling , she has useful info & advice on TED. I followed advice to supply with lutein and zeazanthin for eye health (I use Eye Complex 7 from Amazon).

I saw many ophthalmologists before seeing a TED specialist. Would definitely recommend you see a specialist, for early diagnosis/ treatment.

[Delgor in reply to Buddy195]

Many thanks again Buddy - no funny enough I've only just been reading up on selenium and will order same. Really grateful for all your advice!!

[Buddy195 Administrator in reply to Delgor]

Do keep posting if you need further advice or support. It has helped me enormously to communicate with others who have experience of TED symptoms. Just try not to overdo it on Google.... remember sites generally post ‘worse case scenario’ photos.

I have taken photos of my own eyes during the past couple of years ( & put in the ‘hidden’ section of my phone so I’m not continually looking at them!) I’ve found this useful to share with specialists/ monitor my own condition.

Since starting a trial of T3 at my TED ophthalmologist recommendation, my eye swelling is noticeably reduced (latest measurements indicate 5mm reduction) and my asymmetry not as obvious. It’s taken a long time to see any improvements, so I’m very pleased. Light sensitivity is still a big issue though; need reactive glasses & night vision lenses for driving.

[DeeD123 in reply to Buddy195]

I’m one as well , ted with hashimotoes

[Buddy195 Administrator in reply to DeeD123]

👍it’s good to know of other members with a similar diagnosis! 😊

[Delgor in reply to PurpleNails]

Hi Purple Nails, Thanks so much for replying - trying hard to make sense of what is happening to me as I have never felt as bad as this ever. Yes, 1 was the range for Trab test. Went badly overactive somewhere around 1991/92; put on carbimazole for a year before thyroidectomy (now know I shouldn't have been hurried into this). Scans recently showed multinodules and that thyroid had been growing back down one side (originally had 2/3 removed). TED not confirmed by anyone (nurse suggested this when getting my covid-jab and noticing my red eyes which I've been having all year and because I mentioned I was currently having thyroid problems). Thyroid function test almost 6 weeks ago showed TSH: 0.005; Free T4: 28.00; Free T3: 7.35 so reduced from 2 1/2 grains of Armour Thyroid to 2 grains (tried to up it by 1/4 grain as suggested but had terrible bowel problems so stayed with 2 grains) and will be tested again this week. Can't prove it but feel there is a very strong possiblity this has been running through my family and affected both my Mum and grandmother very much. I've only ever seen the hospital endo once 14 months ago and haven't found him at all helpful hence my turning to the lovely people on here.

[pennyannie in reply to Delgor]

Hey there again ;

Graves antibodies wax and wane and I think the fact that you have previously been diagnosed makes the body more prone to be triggered at a later date.

I believe Graves Ophthalmology runs it's own course, Elaine Moore has written extensively on this issue which tends to affect around 50% of the people who get diagnosed with Graves.

My thyroid eye disease occurred after RAI treatment, though I suffered dry gritty eyes at diagnosis and around 15 years earlier had had emergency laser treatment at Moorfields for holes and tears in both my eyes, and diagnosed with uveitis. The dots maybe did get joined up - I don't know as I've had to put myself back together again 10 years after the RAI treatment for Graves in 2005.

There is usually a genetic predisposition to Graves and one can generally find relatives, usually a generation away from you with thyroid disease issues.

[Delgor in reply to pennyannie]

Thanks so much again PennyAnnie for all your advice too! Have read up lots on the Elaine Moore site - never really knew much about Graves Disease at all as just did what the doc said all those years ago and spent my time researching hypothyroidism as I thought I had that for life (how little I knew). Will keep reading and thanks to everyone again on here for all your support.

[pennyannie in reply to Delgor]

Good morning - well yes I totally get it -

After RAI treatment for Graves in 2005 and being told I was better it was 10 years later that I needed to start my learning curve as I now live and manage " lingering " Graves, thyroid eye disease and hypothyroidism.

[Delgor in reply to pennyannie]

Oh yes PennyAnnie I'm also beginning to get it! Grandmother had white scar on her neck, same as me, no-one really knew what it was for but my Mum thought it had been for some sort of tumour. My poor Mum who was the kindest soul you could ever wish to meet started suffering with depression in her late 30's and wasn't at all easy to live with which eventually resulted in her marriage break-up. Eventually her memory became worse and worse and she ended up being diagnosed with dementia (I now believe lots of older people maybe suffering with severe hypo problems and not dementia) - so sad I never ever knew a problem was running through the family but at least I can now forewarn other family members.

[PurpleNails Administrator in reply to Delgor]

Multiple hot nodules (often referred to as toxic nodular goitre) may well be the source of your hyperthyroidism. If your thyroid was growing downward, surgery would have been necessary and waiting longer may have caused greater issues.

I have a large solitary nodule which is the root of my hyperthyroidism & have never tested positive for any antibodies.

As I mentioned in my conversation above few doctors except knowledgeable eye specialists will recognise thyroid eye disease not being associated with Graves, so recommend you seek an urgent referral while still hyper.

[Delgor in reply to PurpleNails]

Thanks so much again PurpleNails - will definitely push to see someone now - me thinks it's time for action

😆

[Jan_Noack in reply to PurpleNails]

actually the thryoid almost 100% regrows if it is only almost removed or partially removed by surgery. This was the standard treatment before the 1970's when T4 synthetic meds were use. AS long as its part there,it will regrow and except for the first couple of weeks when one in extremely hypo and used to be allowed to mostly hand around bed..and the following 4 weeks where one is a little hypo , one is normal for the rest of your life. My grandmother, great aunt and Mother that I know of were treated in this way . That all had lumps (goitre) which was removed, and they all had very normal thyroid hormones for the rest of their lives. My Mu at 88 still had a TSH of 1.1 (incredible it had been that value on every test since she was 60), and a fT4 of 18 or 19 and an fT3 of 4.7 to 4.9...every test. She had been told she had a total thyroid removal..only she can't have done it. I found out her surgeon was famed for doing great partial thyroid removal..and taught this skill at uni as well!. My grandmother was the same ..completely normal. I have a friend whose daughter was told to opt for chemical treatment.. and she asked my advice. She approached the endo and explained she wanted a partial thyroidectomy ..and my friend's daughter had on (about 10 years ago now). She is fine.. never a problem . She only took a week or so to feel normal too (according to her!)..so nomeds after. you have to let the tissue regrow which it won't do with meds.. If you get some chemical treatment like radioactive iodine..then no you've destroyed your thyroid and you will most likely never feel normal even with replacement..sad how we advance isn't it. If you have an enlarged thyroid or nodule ..opt for just a removal and leaving at least enough thyroid issue to allow regeneration...

[Delgor in reply to Jan_Noack]

Thanks so much Jan - oh wow talk about giving people food for thought! This forum is simply amazing and once again I just can't thank everyone enough for all their input. Will post again at a later date when I have more news but hugs to everyone!!!!!

[radd]

You got the correct test results this time then Delgor 😁

If your new thyroid was supplying a consistent amount of thyroid hormone in addition to your replacement meds, you wouldn’t be having ‘swings’ which are usually indicative of fluctuating antibody attacks. Therefore this test can not totally eliminate Graves given your history and a regrowing thyroid gland.

Possible other considerations? -

Your nodules aren’t cancerous but have they been confirmed as not hot?

Asking other Grave sufferers their experiences re medicating NDT with possible fluctuating TRAb’s. (Some Hashi sufferers are intolerant of NDT as the antibodies recognise the gland as more tissue to attack)

Also I noticed from your January test Vitamin B12 is over-range whilst folate is only 30% through range. They really should balance as often use the same pathways. Also folic acid participates in the homocysteine metabolic cycle and adequate levels are required to keep this in check, as high levels are considered a significant risk factor in cardiovascular disease & may disrupt thyroid metabolism. It can be supplemented as methylfolate.

[Delgor in reply to radd]

Hi Radd, Yes I got there in the end. I did stop supplementing with B12 when I saw my result -but have never supplemented with the vitamin B complex with folate of folic acid so will have to investigate this as well as selenium. So much more to learn and whether in fact I might be better on a combination of T4 and T3 for a while at least I just really can't thank everyone enough for all their support and advice

👍

[Jan_Noack in reply to Delgor]

I agree with not tolerating the natural thryoid hormone . I should have tried for a T4 and T3 I think. my antiTPO and antiTG went sky high and I developed other autoimmune diseases. I'm now on prednisolone and T4 (for past 5 years). For some reason I can tolerate just T4 when I am on steroids!..I haven't worked that out but I have been ut on cortisom=ne or prednisone etc over the past 20 years and each time my thyroid hormones settled down. I guess partly its as it lowers the antibodies. My antiTPO and antiTG are now only in the hundreds I had huge swings too before I went on prednisone. ..and yet I never had any TSI antibodies. I still have no TRab or TSI antibodies..but maybe the steroids for 5 years suppressed them completely.

Ldn only made me very anxious after a while each time I tried it too

[Delgor in reply to Jan_Noack]

Thanks so much Jan - the more info I can gather obviously the better but really thinking I need to find a private endo now as I'm also starting on with other diseases that I didn't have before - aah! Perhaps if the hosital endo had listened to me 14 months ago instead of writing me off as just being stressed I may have averted some issues but I am where I am although it is sad what is happening to the thyroid population as a large - so much suffering on HU!

[ling]

What is the range for the 0.8 iU/L TRAb result?

Thank you

[Delgor in reply to ling]

So sorry ling - no range given by Medichecks and I don't know nearly enough to be of help to you as this was my first TRAb test ever - you could always try one of the many lovely people who replied to my post. Best of Luck.

[ling in reply to Delgor]

The range will allow us to tell how high your TRAb is, and if you have Graves.

[Delgor in reply to ling]

no I've checked again and there is no range - will go back and investigate further with Medichecks

[Delgor in reply to ling]

Hi ling, Medichecks did omit to put in range results which should have read l.51-3 so obviously 0.8 thought to be negative. As I said to Pennyannie I don't know whether my antibodies could have come down for some reason but unfortunately I have no marker at all as the hospital who did the original thyroidectomy has now closed down and I've never had a Graves antibody test ever since - all helps!

[ling in reply to Delgor]

So the range is 1.51-3.TRAb at 0.8, whilst it's not negative, it is below range, so that means currently no Graves.

TRAb does fluctuate, so you should monitor it since u mention having hyper symptoms.

[Delgor in reply to ling]

Many thanks ling - yes I will certainly keep an eye on things in future - if there's one important thing that I have learnt from the "team" on HU, it's that I should not place my trust in endo's and to be my own advocate. I'm really, really grateful to everyone on here!

[ling in reply to Delgor]

Yes, you should certainly learn more so you are better able to look out for yourself. But not all doctors are bad.

[Delgor in reply to ling]

I absolutely agree with you in that all doctors are not bad - one in particular gave me my life back when I thought I was going to be consigned to bed for the rest of my life and sadly he died because of all the stress he endured with tribunals in his quest to help patients who had been let down by the "system". If it hadn't of been for the pandemic I wouldn't have even considered going to see my local hospital endo and it's my biggest regret in life that I ever did but I am where I am and still alive even though life has become one endless round of hospital visits. My heart aches for the amount of people on HU who have suffered far worse than me and whom are still suffering and yet are finding the time to still help others - very humbling .....

[ling in reply to Delgor]

Thank you for sharing your thoughts.

Btw, what PurpleNails brought up about the weird looking range for the Medichecks TRAb test, she could be on to something. I would suggest, if possible, to have the TRAb retested when u next get any doctor-ordered blood tests.

[Delgor in reply to ling]

Hi ling, I should be getting my Medichecks thyroid function test result back at the end of this week so will ring them again then and query the TRAb range yet again. No good waiting for the endo to order anything - he only ever did an adrenal fatigue test and a second scan because I asked and when I asked about having an antibody test he couldn't understand why that should be necessary as according to him it doesn't matter what thyroid disease you have. He even suggested I came off all my medication altogether to see what was happening (thankfully HU advised me to go slowly) so I resisted. It's the first time ever I have felt so unsafe in anybody's hands but will now rectify this a.s.a.p.

😌

[ling in reply to Delgor]

Oh dear, this fella sounds just atrocious. Ya best fix that if possible.

Wonder if it's any use checking with Medichecks? Will they even know they've made a mistake, if they really did give you the wrong range? Is there an alternative to Medichecks?

Never mind, let's not stress too much over it. Just keep an eye on the hyper symptoms. If TRAb is trending up, it will cause more symptoms. U can try and get it checked then.

[pennyannie in reply to Delgor]

I think there should be a reference range on the Medichecks results otherwise what is the point of the exercise ?

I've just seen under 9 on a website as not being Graves but it all depends on the laboratory doing the testing as to the assays they use.

[Delgor in reply to pennyannie]

Oh dear me - no there is no range given so will go back and check again with Medichecks just to clarify things once and for all

[pennyannie in reply to Delgor]

Ok then, good idea - how strange :

[Delgor in reply to pennyannie]

Hi Pennyannie - Medichecks had omitted to put in range which should have said 1.51-3 so obviously 0.8 would be considered negative unless somehow or other antibodies have come down. Unfortunately I have never been tested for Graves antibodies ever before - I should imagine it would have been done by the hospital all those years ago when I went overactive in the first place but they have since closed down and records apparently not kept - shucks!

[pennyannie in reply to Delgor]

Thank you - and so the mystery continues !!

[pennyannie in reply to Delgor]

I was trying to bring ' ling ' back in here but think I've failed !!!

[Delgor in reply to pennyannie]

Please don't worry - everyone has been exceedingly kind - the next thyroid function test will be interesting to say the least!

[pennyannie in reply to Delgor]

I'm going back to finishing work with the vacuum cleaner - I'm good at that !!

Okey Doke - no worries

[PurpleNails Administrator in reply to Delgor]

I would contact them again as I don’t think that range is accurate.

Antibodies don’t generally have a (lower to upper) range as 0 antibodies is the norm, but a nominal level is expected & isn’t of concern. The upper limit might be shown as eg <1 (meaning under 1)

Below 1 would be within limits so negative. But 1 or over would be positive levels.

If a range of (l.51-3) is applied that would suggest too few are equally abnormal as too many (this is the part I’m questioning) and your result of 0.8 would below the given range rather than not exceeding a level high enough to be positive.

If that range is correct then you deserve an explanation of what the implication of under range Trab is?

Does that make sense?

[Delgor in reply to PurpleNails]

Hi Purple Nails, Yes, my brain is boggling but I do think I see what you mean. I looked at 3 other sites on the internet and they mostly said under or over 1.7 with no reference range given, so I'm not sure there is much to be gained by going back again as surely it's still negative. I did a Medichecks thyroid function test yesterday for myself and tomorrow morning I shall be doing another one at the hospital together with a (TFT) Thyroid Peroxidase Antibody test (which the endo ordered) so hopefully hopefully something will be established soonest. Will keep you informed and thanks again.

[PurpleNails Administrator in reply to Delgor]

I agree, it appears a negative level. Perhaps 3 is the upper test limit. In which case it should be clear.