Are positive TSI Antibodies always indicative o... - Thyroid UK

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Are positive TSI Antibodies always indicative of Graves?

Curious123 profile image
16 Replies

I currently have positive TSI antibodies (0.66 range <0.55) and positive TgAB (6.3 range <4.5).

I was hyperthyroid:

TSH <0.01 (0.40-4.00)

FT3 11.3 (3.5-6.5)

FT4 33 (9.0-25.0)

Now currently hypothyroid:

TSH 21.22

FT3 2.4

FT4 7.4

I am 6 months postpartum and initially TSI was negative and it was classed as postpartum thyroiditis. But TSI antibodies are now positive. Thanks!

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Curious123 profile image
Curious123
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pennyannie profile image
pennyannie

Hello Curious :

Yes - I would think the TSI reading - though only slightly over range and positive is confirmation of Graves Disease.

There is generally a genetic predisposition to Graves and likely your giving birth has triggered a Graves flare up -

Looking back it seems you have Hashimoto's AI thyroid disease going on as well :

Were you put on an Anti Thyroid drug or have your T3 and T4 fallen through the ranges naturally ?

Your TSH has recovered and now very high and ' me thinks ' this more like Hashimoto's than Graves - what, if any, medications have been prescribed as your levels are now much too low ?

Curious123 profile image
Curious123 in reply topennyannie

I’ve never been on anything. Jul20 I went hyper out of nowhere and my body returned to normal levels by itself. My dad has Graves. I had TgAB antibodies get to 2.5x upper limit (post hyper) and then managed to return to normal. This time I am postpartum though. First time I’ve ever been hypothyroid and also first time TSI have shown as positive. A GP has prescribed 50mg of levothyroxine for me to take this time if symptomatic while we wait and see if I swing back again.

pennyannie profile image
pennyannie in reply toCurious123

Yes, it does look much more like Hashimoto's so the T4 - Levothyroxine a sensible first step :

You might like to read around a bit -

I'm with Graves but now post RAI thyroid ablation a treatment which I deeply regret - but the most well rounded of all I researched is that of Elaine Moore - it is a Stateside website ( so another leap in time zones ) land Elaine also has a forum much like here and she also replies to people on a one to one basis if required. elaine-moore.com

For Hashimoto's AI Disease many forum members find the research and advice offered of Dr Izabella Wentz of help - thyroidpharmacist.com

I think in light of your family medical history close monitoring is desirable and tracking on your T3 and T4 levels as you hopefully stabilise on Levothyroxine.

T4 is basically inert and a storage hormone which needs to be converted in the body into T3 the active hormone that runs all our bodily functions from our physical through to our mental. emotional, psychological and spiritual wellbeing, our inner central heating system and our metabolism.

Conversion of T4 into T3 can be compromised by several factors, inflammation, antibodies, any physiological stress ( emotional or physical ) dieting, depression and aging but most important and more easily managed are your core strength vitamin and minerals of ferritin, folate, B12 and vitamin D needing to be maintained at optimal levels for optimal conversion of T4 into T3.

Presumably you have your T3 and T4 blood tests prior to having giving birth so have some idea where in the ranges your T3 and T4 ' sat ' for you to feel like ' you ' and well ?

Curious123 profile image
Curious123 in reply topennyannie

Thanks. Yes my TSH was 0.61 (0.4-3.5) and FT4 15.7 (9.0-19.0). I don’t have the FT3 level as that is only tested when TSH and FT4 are abnormal.

I have a history of iron, B12 and vitamin D deficiency so it is a bit of work on the levels. N12 deficiency as I have pernicious anaemia (GPC positive IF negative), iron deficiency assumed due to heavy periods (stage IV endometriosis and Adenomyosis) and the vitamin D they aren’t sure why but I have also developed osteopenia.

I usually take 3,000iu vitamin D daily and daily folate to support monthly B12 injections but things are a bit out of whack due to my baby having food intolerances and I am breast feeding so having to avoid soy, egg and corn (was previously on a total elimination diet). Definitely needing to get my routine back working ASAP.

pennyannie profile image
pennyannie in reply toCurious123

OK then - sadly you're already experienced in this field and aware of these co- factors needing to be in place - it's also a very busy time - so try and just find a little time for yourself, in all that's going on.

Keep us in the loop - and as things settle, hopefully your thyroid will calm down though you may find yourself needing a regular prescription of the Levothyroxine and looking at a diagnosis of Hashimoto's AI disease.

Curious123 profile image
Curious123 in reply topennyannie

Thanks. I went back to Australia for my little ones birth (solo mum by choice) and we just got back to London where I have no family support so this really couldn’t have come at a worse time! 😱😣🤪😂

pennyannie profile image
pennyannie in reply toCurious123

Oh, I didn't realise - I thought you were still ' down under ' !!

So presume you already have a UK doctor and it is s/he who has prescribed the T4.

Curious123 profile image
Curious123 in reply topennyannie

I have a UK GP but it was an Aus GP who prescribed the T4 before we got on the flight. Next available planned bookable GP apt here in UK is 12th September so will be joining the 8am practice opening time call queue to try and get an earlier appointment. 🤪

pennyannie profile image
pennyannie in reply toCurious123

Ok - not ideal scramble - I prefer eggs - good luck :

tattybogle profile image
tattybogle

Not exactly no .. there is actually quite a bit of crossover between antibodies... and between different forms of autoimmune thyroid disease.

Graves ?/ Hashimoto's ? is not always a clean cut case of Either / Or.

a certain % of autoimmune hypothyroid patients do have 'some' TRab (and presumably some of those will have 'some' TSI .

TSI is a measure of just the 'stimulating' form of TRab ( which cause the thyroid to make high T4/T3 in graves ...... but there is also a 'blocking' form of TRab (which cause hypothyroidism by blocking TSH from asking the thyroid to make enough T4/T3).

The effect of TRab (hypo/ hyper) is related to whether you have more of one sort than another .... these effects can balance each other out, and fluctuate as level of stimulating / blocking antibodies change over time .

.... so it's not so much a case of:

"if you have positive TSI, then you have graves" .... it's more a question of :

"how many TSI do you have IN RELATION TO to any blocking TRab you may have AND of observing what effect they are actually having on you thyroid's production of T4/T3" .

You have to look the whole presentation and history (especially when the antibody levels in question are low ish )

nothing is ever 100% clear cut in thyroid land .

But Your current presentation in very clearly hypothyroid .

previous history of enlarged thyroid >>>> hyper >>> raised TGab 237 (0-115) ....then resolved .

then pregnancy kicked of a wobble >>> hyper again >>>> now hypo (but with slightly raised level of TSI found )

TSI are the 'stimulating' form of TRab which 'act like' TSH and stimulate thyroid to make T4/T3.

but obviously you don't (currently) have enough TSI to be having any significant impact (at the moment) ~ if you did , they would be causing high T4 /T3.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

in case you haven't come across it yet , here's a good site for accurate information about thyroid antibodies / autoimmunity.... well worth checking out the site map for loads of other stuff.

thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/ continues onto 2nd page ..see link at end .

thyroidpatients.ca/2020/04/... remissions-and-fluctuations-trab

Curious123 profile image
Curious123 in reply totattybogle

Thanks! I’ll take a look. I have PA so knew I was at risk for thyroid disfunction (plus the strong family history of thyroid and other autoimmune issues beyond just my Dad.

radd profile image
radd in reply toCurious123

Curious,

I agree with tats. Antibodies can appear in any combo and it is usually the dictating level that will give you a diagnosis.

However, this is where you need to be careful because as you can see these levels may be constantly variable but the medical profession don't always recognise this. We've had members hypo but still medicating carbimazole, or hyper and still medicating Levothyroxine.

You will need to be your own advocate and it's a good idea to record all results in a spreadsheet for continuing easy reference. You will also need regular labs including all thyroid antibodies to record accurately what is going on.

Horrid getting postpartum thyroid complications when all you want to do is enjoy your baby. It might pass, it might not. Whatever, be mindful you are now at more risk of iron and nutrient deficiencies, and the strategies for calming the autoimmune response for either Hashi or Graves is the same - g/f diet, possibly dairy free, supplementing fish oils and ensuring Vit D is optimal, etc.

pennyannie has already supplied good advice regarding where to seek further info.

Curious123 profile image
Curious123 in reply toradd

Thanks. I’ve already had a long history of iron, B12 and vitamin D deficiencies. Time to muster up some energy to get back into a good routine with the supplements. Will need to research for more soy free ones. I already had a spreadsheet with results as I was tracking my iron previously so put everything in but stopped around 2020, so will have to update for the last couple of years. :) Sadly I’ve really had to advocate over the last 11 years so getting quite good at it and working the system. It just takes a lot of energy. :)

Curious123 profile image
Curious123 in reply toradd

is there a good endocrinologist you could recommend in London? Last one wasn’t super helpful, told me the hyper wasn’t autoimmune, just a thyroiditis and as my iron levels went funny (ferritin shot up high), tried to tell me the iron caused the thyroid issue and to see Haematology (who then just said nup, not possible). From reading up, thyroid impacts helcidin which impacts iron transport so the thyroid issue caused the iron anomaly, not the other way around.

radd profile image
radd in reply toCurious123

Curious123,

‘From reading up, thyroid impacts helcidin which impacts iron transport so the thyroid issue caused the iron anomaly, not the other way around.’

Yes, that is correct but also other transport systems, and the thyroid gland/hormones are dependant on iron (and many other trace elements, eg zinc, selenium, iodine) for best function.

On our forum the common problems seen are the auto-antibodies creating chronic inflammation that send out cytokines (chemical messengers) that are more pro-inflammatory. Heme and non-heme are absorbed slightly differently. Once heme iron is absorbed (with help from essential HCL and possibly Vit C) ferroportin takes it to transferrin for binding and transporting around the body.

However, any any form of immune inflammatory response will cause the liver to start releasing more damaging cytokines, and some more unique to Hashi/Graves. Ferroportin can be very vulnerable to autoimmune inflammation and further negatively influenced by the hyper/hypo thyroid consequences of low stomach acid and gut issues (infections, etc), insulin resistance, obesity, etc.

Transferin (transporter) should then deliver the iron to soluble transferrin in bone marrow, where little globulin proteins combine with iron, and then with Vit B12 & folate) helping to produce stem cells that get smaller & smaller until its a fully formed RBC’s lasting about 120 days delivers oxygen. Sadly both Vit B12 and folate are often low in thyroid issues and are again influenced by unwanted autoimmune inflammation. Once bone marrow systems are skewed it can be hard to encourage back correct behaviour and so anaemia's occur.

Then we have ferritin meant to be storing iron to prevent it from being 'free' and ensuring adequate is always available, but again autoimmune inflammation will be distorting its efforts because ferritin is an acute inflammatory marker itself. You can see the troubles caused by unwanted inflammation are on multiple levels and not isolated to one particular action.

I would say your biggest help would be to try reduce the unwanted autoimmune response (whether it be Graves or Hashi antibodies they are all damaging and unwanted). A great book for understanding autoimmunity is The Root Cause by Isabella Wentz.

Curious123 profile image
Curious123 in reply toradd

Thanks, I’ll take a look into it.

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