Hello there
Please can someone help me.
I arranged for my daughter to be tested for TSI antibodies privately as she shows many symptoms of being hyperthyroid though diagnosed with Autoimmune Thyroiditis 3 months ago.
Her results are below but i am unable to speak to her practitioner today. Not sure what below the reference range means and why it therefore says borderline?
0.97 - IU/L 1.51 -3.0 (borderline)
Borderline what?
I'm no expert, but I have never seen an antibody range with a lower limit. They usually start at zero. And for TSI antibodies, I believe it's normally zero to 1.3, or something like that. So, I don't know what it would mean if the result was under-range. Where did you get those numbers?
If she has Autoimmune Thyroiditis - aka Hashi's - I imagine her TPO antibodies were high, yes? Do you know how Hashi's works? It tends to swing between hypo and hyper-like levels of thyroid hormone. But, the 'hyper' phases are not true hyperthyroidism as you find in Grave's. It's just the dying cells dumping their store of hormone into the blood.
When did she last have full thyroid testing: TSH, FT4, FT3? Do you have a copy of the results?
Be careful of symptoms, because so many can be of both hypo- and hyperthyroidism, such as anxiety and palpitations.
Thank you.
Yes, she is hypo with TPOs 183 but due to hyper symtoms, FD tested TSI. I know you can swing both (which is so worrying) but she definitely has had more hyper than hypo in the past and up until now. Will these diminish and then she will be hypo or will she alsos have both symptoms? Thank you
No, you can't swing between Hashi's and Grave's. Two completely different diseases. You can have both at the same time - although that's rare - but one is usually dominant. And, if she has hypo periods, then it's more likely to be Hashi's than Grave's. And, as I said, be very wary of symptoms, they can be either.
This is a brief run-down of how Hashi's works, because I don't think my little explanation above was very clear:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
thyroiduk.org.uk/tuk/about_...
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can do for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back. 
Thank you so much. Nobody has ever explained it like that.
So, trying to get her TSH down as much as possible will help flares?
Her last results were TSH 31 T4 19.5 (14-20) and T3 6 (3.5-7) Which a lot of people have said is unusual hence why i wanted the TSI done and why im confused 🤷🏻♀️ 😞
Well, it might - no guarantees. There are different opinions on that - but aren't there on everything? Worth a try.
Yes, those results are unusual, but certainly not Grave's - or even hyper! If she were hyper, her TSH would be suppressed and her Frees well over-range.
I don't think that TSH can be right. Looks like interference in the assay. Does she take any supplements containing biotin? Because that can skew results. Or, could be anti-TSH antibodies. What was she taking at the time? Levo? How much? Do you have any other results on the same dose?
No biotin.
She was on 25mcg Levo for 8 weeks (starting dose) then her first tests measured a TSH of 31. TSH was 12 prior to that. T4 16.8 then. So they both increased with meds. It was then increased to 50mcg and will do next bloods test Wed?
OK, so it could be interference in the test, or it could just be due to the Hashi's, but the TSH doesn't correspond to the FT4/3 results. With FT4/3 right up the top of the range, you would expect the TSH to be much lower. But, see what the next test says.
We have all gone gluten free.
Her bain fog is quite bad atm too as well as the hair loss 😞
Sorry, also, if the TPO’s are a result of the attacks do we know what the cause of the attacks are to help prevent them? It just sounds like my daughter is going to have such a hard life. Shes 6 and already feels ‘different’ 😞
No, we don't know. Some people believe it's eating gluten. But, if you're all gluten-free, it can't be that.
I don't think her life will be all that hard, once she gets on the right replacement dose. But, it's essential that she learns as much as she can about her disease, so that she can fight her corner when dealing with ignorant doctors. And, there is a lot of ignorance around, I'm afraid. She will learn how to adapt and cope with it, I'm sure. And plenty of people manage to have pretty normal lives. It's just that on this forum you'll only find the odd balls that don't do well on conventional treatment, for whatever reason. But, we're in the minority, most people do.
Thanks for being so helpful. I really appreciate it!
Dolphin40
0.97 - IU/L 1.51 -3.0 (borderline)
Was there anything else, any other figures, such as <xx or >yy
I'm wondering if the 1.51-3.0 range is borderline.
Anyway, her result of 0.97 is quite a long way below that so I have no doub that result is negative - she is not hyperthyroid.
As she has positive TPO antibodies of 183 (the ranges we see here tend to be either <30 or <60) then she has Hashi's.
Does her functional doctor not know how Hashi's works? Swings between hypo and hyper are common and will continue, at unknown, random intervals, until her thyroid is gradually destroyed.
No she didn’t say you can have both symptoms. Its so sad and scary! I always said, I don’t know which daughter will wake up in the morning 😞
This may sound like a silly question but how do you know when the thyroid is completely destroyed?
Dolphin40
I don't have Hashi's so no personal experience, but when your thyroid is eventually destroyed it will be full blown hypothyroidism. There will be no thyroid left for the immune system to attack so there there shouldn't be any more swings, just hypo symptoms until perfect dose of Levo is found.
That’s worrying because it sounds like its then managed better when thyroid is completely destroyed? Thanks for your help
it sounds like its then managed better when thyroid is completely destroyed?
Well, that depends on whether you have a doctor who understands how to treat hypothyroidism and knows you need optimal levels to feel well, or whether he thinks anywhere in range is perfect. The reason this forum exists and has over 108,000 members is because their doctors haven't got a clue and wont listen when the patient still has symptoms and why some of us self treat.
Is that with supplements/vitamins you mean?
😞 isnt there something else we can all do in terms of more/earlier recognition. I mean there are groups and stuff out there i know but how can we make the health system take us seriously. There are millions of people with the same symptoms, id love to know how we can try and change things .....
Dolphin40
Is that with supplements/vitamins you mean?
No, I'm talking about how doctors haven't got much of a clue about how to treat hypothyroidism.
isnt there something else we can all do in terms of more/earlier recognition.
The thyroid patients support groups and the charity ThyroidUK recognise and understand better than most doctors. Unfortunately their training in thyroid disease is so bad that the support groups seem to know more than the doctors. ThyroidUK works hard for better treatment for us patients but doctors minds are firmly closed because they are taught that nothing else matters except TSH, not the actual thyroid hormones FT4 and FT3; they tend to dismiss antibodies as not being important and don't undersand that autoimmune thyroid disease (Hashimoto's) does bring it's own problems; they don't understand or accept that some people have trouble converting T4 to the active hormone T3; they don't accept that some patients don't do well on levothyroxine; they have no understanding of nutrients and how important optimal levels are for us thyroid patients (they don't even understand "optimal levels", if it's anywhere within range then it's fine); if we complain that we still have hypothyroid symptoms despite results being "in range" then we are dismissed as having mental health problems; the list goes on.
Daughter's blood results
Clinical Utility of TSH Receptor Antibodies (TRAb) 
Help with understanding Graves' TSH Receptor Antibodies/Thyroid Peroxidase test results?
Help reading results
Antithyroid antibodies??
