Thyroid antibody test: I recently had a private... - Thyroid UK

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Thyroid antibody test

Button11 profile image
Button11
•54 Replies

I recently had a private test for thyroid antibodies but when I took it to gp he said it was a pointless test and he doesn't know why they've done it as it just causes more problems for him as a gp especially as my t3, t4 and tsh were were all in normal range. Is it really a pointless test?

my antibodies were 81.1 so I was in a null area not negative below 60 or positive above 100. Tsh was 3.74 (0.27-4.20) T3 was 4.2 (3.1-6.8) and t4 was 14.29 (12.0-22)

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ITYFIALMCTT profile image
ITYFIALMCTT

I'm going to await the responses from the knowledgeable people here with interest. :)

Strictly speaking, as there's no cure for Hashimoto's, there's a point for some people where they tend to say, "Why test for something if it's not going to alter your management".

However, as it indicates an auto-immune condition that involves the thyroid, I'm a little unclear as to why your GP thinks it's a chronic condition doesn't need to be managed or monitored (unlike other chronic conditions). Even NHS Choices discusses the management of it: "Hashimoto's thyroiditis cannot be cured, so the low levels of thyroid hormone are usually permanent. However, the symptoms are often easily treated with the thyroid hormone replacement medication levothyroxine, which is usually taken for life".

nhs.uk/conditions/thyroidit...

Hypo101 profile image
Hypo101

It does matter because it can tell you if you have either just hypthyrodism or the more serious autoimmune hashimotos that causes hypothyrodism though they are treated the same. The fact that he said "just causes more problems for him" is very telling and I would find somebody else. It's a chronic life long disease that requires life long medication for most and if you have hashimotos your symptoms and bloods will go up and down.

Scazzoh profile image
Scazzoh

If you can reduce your antibodies, there will be fewer of them to attack your thyroid, and you will have a smaller chance of contracting another auto-immune disease. The less your thyroid is attacked, the longer it will be able to function normally and contribute thyroid hormones to your system. The NHS's stance is to do nothing until your TSH is off the scale and then prescribe Levo. You could be feeling ill for years. Your GP probably doesn't understand the importance of antibodies and is too pig-headed/arrogant to admit it. Presumably you had the tests done privately because you are not feeling well, but your GP doesn't care about that. Try giving up gluten, which will reduce the antibodies and may make you feel better.

greygoose profile image
greygoose• in reply toScazzoh

"If you can reduce your antibodies, there will be fewer of them to attack your thyroid, and you will have a smaller chance of contracting another auto-immune disease."

Sorry, but that's just not true. Each auto-immune disease has its own antibodies. But it's not the antibodies that cause the disease. It's a problem with the immune system. And when that's gone wrong once, it can go wrong again, no matter how many antibodies you have.

Button11 , try going gluten-free, as Scazzoh suggested - but it has to be 100% gluten-free - and try taking selenium. That can also lower antibodies, and help with conversion. You really need your TSH suppressed, but as your doctor is a numb-skull, there's not much chance of that! How dare you make more work for him! Poor little thing!!! :P lol

Lottie08 profile image
Lottie08• in reply togreygoose

Hi there if you say go gluten free do you mean do it all or just certain things? Thanks

greygoose profile image
greygoose• in reply toLottie08

Not sure I understand your question, but I mean cut out everything that contains gluten.

Lottie08 profile image
Lottie08• in reply togreygoose

Sorry if i wasnt clear enough, its early in the morning 😊

greygoose profile image
greygoose• in reply toLottie08

lol But, did I answer your question?

Lottie08 profile image
Lottie08• in reply togreygoose

Lol yes you did thank you 😊

Button11 profile image
Button11• in reply toLottie08

Lottie08 completely gluten free but i was worried about it as I'm not diagnosed Celiac and heard going gluten free was not good for your body unless you were Celiac

greygoose profile image
greygoose• in reply toButton11

Yes, well, you'll hear all sorts of rubbish in the course of your journey! You have to learn to sort the chaff from the wheat!

Gluten-free might not do you any good, but it won't do you any harm. Try it for three months, see how you feel. If you don't feel any better, go back to eating gluten, and see how you feel then. If you don't feel any worse, then gluten-free wasn't doing any good for you, so no point in continuing. But, you might find that you actually want to go back to gluten-free! Nothing ventured, nothing gained. :)

Button11 profile image
Button11• in reply togreygoose

greygoose I have been eating more gluten feee but not 100% but very close to it as my Boyfriend is recently diagnosed Celiac anyway. My stomach feels better but I've also upped my probiotics and been talking vit d and folate so I don't know what it is that's helping, probably all of it but definitely the probiotics

greygoose profile image
greygoose• in reply toButton11

Ah, that's why you should never start more than one thing at a time. But, I don't think vit D nor folate would make your stomach feel better. I think that's got to be the gluten-free and/or the probiotics. :)

Button11 profile image
Button11• in reply togreygoose

greygoose i did that test that's why I asked her about low acid and got that response but I've also hadn't people mention possible candida overgrowth as swabs showed yeast but doc didn't even tell me what to do about it so I just went and got a thrush tablet I don't even know if that's right thing to do but I did it.

greygoose profile image
greygoose• in reply toButton11

I'm sorry, I can't help you with candida. But, your doctor sounds pretty useless! Can't you see someone else?

At the end of that article, it tells you what to do about low stomach acid. But, if you're not sure, post a new question asking about it. :)

greensee profile image
greensee• in reply toButton11

The reason GF can be unhealthy is because of GF products. Great if you have a small child who needs to fit in with peers at a birthday party or want an occasional "feel like every one else" food, but GF products are processed food. A processed food diet isn't good for you (gluten free or otherwise) and when it comes to gluten "look alikes", they're full of sugar, gums and fillers to make them more like the gluten containing products. If you eat gluten free with naturally GF, unprocessed like foods, meat, fish, veg, fruit etc then there are no health risks. You can include potatoes, rice, quinoa and other grains etc (though gluten sensitives can also experience a reaction to those foods). Gluten sensitivity to oats, tends to be a reaction to cross contamination (from the processing of oats in a gluten grain process) rather than the gluten in oats itself.

The antibody for gluten isn't like a sniper - it's like Arnold Schwarzeniger with a machine gun. Thyroid tissue is similar to gluten, so can be attacked by antibodies to gluten. Not everyone makes antibodies to gluten, but if you do and you cut out gluten, you can reduce your antibodies to gluten which reduces the risk to your thyroid.

People who have an autoimmune disease, especially thyroid autoimmune are associated with a higher risk of gluten sensitivity and coeliac disease (two different things). Coeliac disease is an end stage diagnosis, it means your gut has been damaged by gluten. This is an ongoing process if you are reacting to gluten, so not having a diagnosis of coeliac doesn't mean you don't have a response to gluten. Therefore coeliac or not, at least in Functional Medicine terms (which looks at what triggers and fuels the disease process, rather than what can we use to treat the symptoms), the recommendation if you have thyroid issues is to avoid gluten. 100%. A single gram of gluten can cause an immune "cascade response" (exactly as it sounds) which can last for weeks.

Button11 profile image
Button11• in reply toScazzoh

@greygoose I am trying to go gluten free as my partner has just been diagnosed Celiac anyway so was going along with that as someone else had mentioned it for the thyroid. My stomach feels better but that's about it really. It's just I had other things such as low b12 which I got a bulk of injections for then told I didn't need them again, low vit d and now folate and I ask why it's happening and get 0 response he sees anxiety on my notes and is trying to put me on meds for that when I'm like no anxiety doesn't cause a drop in folate and vit d

greygoose profile image
greygoose• in reply toButton11

And your right. It doesn't. But, your doctor gets funding points, or whatever, for prescribing antidepressants, he gets nothing for hormones or vitamins, so he's obviously going to try to unload his antiDs on as many patients as possible.

The actual cause is low stomach acid. Hypos have low stomach acid and therefore have problems digesting food and absorbing nutrients. But doctors know nothing about that. If you want advice on how to raise your stomach acid, post a new question, and I'm sure you'll get lots of answers. :)

Button11 profile image
Button11• in reply togreygoose

greygoose well I'm actually on anti acids the doctor (different one) laughed at me when I mentioned low acid she said no one gets low stomach acid why do you think we're constantly writing prescriptions for anti acids!

greygoose profile image
greygoose• in reply toButton11

Because they're ignorant? Ohhhh! Good job she didn't ask me that question! lol

Antacids are just going to make the problem worse. Stop them for a while, and do the home test at the end of this article :

scdlifestyle.com/2012/03/3-...

Clutter profile image
Clutter

Button11,

It isn't pointless because it either excludes autoimmune thyroid disease or confirms it which means you will probably become hypothyroid in the future. If the results are positive you won't get treatment for hypothyroidism until TSH or FT4 are abnormal.

What were the thyroid antibody results and ranges?

Button11 profile image
Button11• in reply toClutter

@Clutter hi the range was anything below 60 was negative and above 100 positive and middle area kind of just annul area mine was 81.1

Clutter profile image
Clutter• in reply toButton11

Button11,

That means it is "equivocal" ie uncertain. You could wait a year and retest to see whether it has risen and has become positive or you could assume it is positive and make some dietary changes in the hope that it delays progression to hypothyroidism. It makes no difference to treatment whether TPOab is positive or negative.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

SeasideSusie profile image
SeasideSusieRemembering

Button11 "it just causes more problems for him as a gp"

Well, what a bloody shame! What the **** does he think he's getting a nice fat renumeration for? Sitting on his a**e all day dishing out antidepressants to "placate the little ladies with their imaginary medical conditions" which is how I assume they all see us! No, he's paid to be a patient's partner in health, to listen to their symptoms, to use his expertise, to investigate and to try his utmost to treat whatever problem is presented to him.

I think his remark must be the most stupid and condescending thing I have ever read on the forum.

What an utter dickhead you have for a doctor. Dump him and find one that actually wants to help his patients.

*Sincere apologies if any of my language (actual or implied) offends anyone. As if we don't read enough about us hypo patients being poorly treated, this really does take the biscuit!

Button11 profile image
Button11• in reply toSeasideSusie

SeasideSusie I know I feel myself like I'm imagining it all but I know I don't feel right. He tells me as all my tests are clear it's anxiety and ibs and I'm best to try anxiety meds as I've had other therapy for it. But I became folate and vit d deficit too and had 6 b12 injections and I can't get an answer as to why other than stress after 2 deaths in family

SeasideSusie profile image
SeasideSusieRemembering• in reply toButton11

Button11 Do you have the results of your tests? If not, ask for a print out (you are legally entitled to them under the Data Protection Act 1998) then post them, with reference ranges, and members will comment and offer guidance.

Button11 profile image
Button11• in reply toSeasideSusie

SeasideSusie yes I do have them for that test where I had the antibodies done my antibodies were 81.1 so I was in a null area not negative or positive. Tsh was 3.74 (0.27-4.20) T3 was 4.2 (3.1-6.8) and t4 was 14.29 (12.0-22) I just don't know how to interpret them as like he said they are in normal range

SeasideSusie profile image
SeasideSusieRemembering• in reply toButton11

Button11 TSH at 3.74 clearly shows your thyroid is struggling. FT4 and FT3 are both low in range. A healthy person would have a TSH of 2 or below and the free TS over half way through range. Clearly you are on your way to hypothyroidism.

And with antibodies well over the 'negative' range it's pretty obvious that Hashimoto's is the problem regardless of the fact that you aren't yet quite into the 'positive' area.

What a shame there is a 'middling' area with those antibody ranges. With a Blue Horizon or Medichecks test it is far more clear cut, you're either below range or above so either negative or positive.

Button11 profile image
Button11• in reply toSeasideSusie

SeasideSusie i did have the tests done by blue horizon my parents paid like £300 for some bloods and all I got was that and I was vit d and floated definit everything else was ok. Just feel so stuck what to do now. I'm trying the gluten free diet so guess I just carry on with that . Thanks for your feedback

SeasideSusie profile image
SeasideSusieRemembering• in reply toButton11

That sounds very different from the usual Blue Horizon tests we normally see on here where people use the fingerprick ones such as Thyroid plus Eleven or plus Six. With those the antibodies are always with ranges:

TPO <34

TG <115

Button11 profile image
Button11• in reply toSeasideSusie

I'm not sure was definitely blue horizon though maybe they have changed the levels this was only March

SeasideSusie profile image
SeasideSusieRemembering• in reply toButton11

Was it a fingerprick test or did you go to a Spire or Nuffield hospital for blood draw? I can't see any fingerprick tests anywhere near the price you paid.

I had a plus Eleven in February and the antibody ranges were as I stated above.

Button11 profile image
Button11• in reply toSeasideSusie

I had proper bloods taken at a spires hospital, don't know why they would be different to yours though

SeasideSusie profile image
SeasideSusieRemembering• in reply toButton11

A different lab would have done the testing and use different ranges.

All my fingerprick tests have been done by County Pathology.

My very first private test with Blue Horizon was two years ago, a comprehensive one where blood was drawn at a Spire hospital and the lab was Blood Sciences, Manchester.

I do think it very strange to have a 'middling' range for antibodies though. If they're high enough to be in that range then they're definitely not negative and that says autoimmune thyroid disease to me.

Button11 profile image
Button11• in reply toSeasideSusie

I know haha you would think something is positive or negative wouldn't you

Quasarlis profile image
Quasarlis• in reply toButton11

Susie ... Read my reply as to what how my endo answered my questions ... I think he must be related to this persons doctor!!

Lottie08 profile image
Lottie08• in reply toSeasideSusie

Here here us sufferer's are looked at as though we are been dramatic and putting it on! What's up with the doctors and consultants! Why do we need to convince people we are bloody poorly when we know our bodies and how utter shit we feel!! 😤😤😣😣

Button11 profile image
Button11• in reply toLottie08

Lottie08 I know it's draining enough feeling so rubbish all the time and emotional let alone trying to persuade someone, a medical professional That you are genuinely unwell and it's not just in your head or anxiety!

UrsaP profile image
UrsaP• in reply toSeasideSusie

SeasideSusie Your choice of implied language is probably mild to some I could come up with! I think in many cases you may mean...'to placate the 'fat, lazy' ladies...' And lets face it -that is what they see first...excess weight is the first thing they disregard us for... and the first thing they blame for all our other symptoms! How often have we heard 'I'd like to see you lose some weight...' (Feel like punching them! - Yep, I'd like to see the weight go too!)

humanbean profile image
humanbean• in reply toSeasideSusie

SeasideSusie

*Sincere apologies if any of my language (actual or implied) offends anyone. As if we don't read enough about us hypo patients being poorly treated, this really does take the biscuit!

According to some research on the subject intelligent people swear more :

independent.co.uk/news/scie...

I don't swear much in writing, but in person I often turn the air blue. :D So the link above is my excuse for swearing - and I'm sticking to it! :P

SeasideSusie profile image
SeasideSusieRemembering• in reply tohumanbean

Well whaddaya know! I am a night owl, rarely in bed before midnight, quite often later, I've always said I'm an owl not a lark!

And I have a rather messy coffee table in front of me. Lots of papers on it that I promise myself every day I will sort out and put away. (And I used to be really tidy and organised, it's this retirement lark that's changed me!)

Combined with the odd (!) naughty word then I must be very intelligent :D

puncturedbicycle profile image
puncturedbicycle

If he could be bothered to express himself more clearly I expect he meant that he will not treat you w levo until your Ts reach a certain level; just knowing you have Hashi's will not sway him. Sometimes if your Ts are close (highish tsh, lowish t3/t4 but all in range) an unequivocally positive ABs test will help secure treatment as the doc knows it is just a matter of time before everything slides into place.

If your Ts are borderline this is a judgement call but if they are well within normal limits it is unlikely you'll get a doc to treat.

Private tests are only useful if your doc will take notice or if you're self-treating. A lot of gps see them as an expensive swizz and a way of undermining their authority. I can see where an nhs gp could find it so hard to get a t3 test done (if the lab continually refuses) that they might agree to monitor your own, but if you don't already have an agreement w your gp you're testing at your own risk and expense.

Button11 profile image
Button11• in reply topuncturedbicycle

puncturedbicycle I know he says to me it's definitely not your thyroid and he's just convinced it's my anxiety and just ibs just feel like I'm banging my head against a wall. Can it flare up through stress and go away ?

puncturedbicycle profile image
puncturedbicycle• in reply toButton11

Not that I'm aware of. If you have antibodies you have them. They may fluctuate and can sometimes be controlled via a gluten-free diet or certain supplements (eg selenium) but the official line on Hashimoto's is that it is incurable.

Button11 profile image
Button11• in reply topuncturedbicycle

puncturedbicycle oh ok thank you my selenium levels were ok so I don't want to take that yet

UrsaP profile image
UrsaP• in reply toButton11

If your adrenals are a bit low functioning, and you get stressed it may impact on your thyroid too. Could low adrenals have caused you anxiety in the past?

I am on t3 only - can't convert t4. And have been great most of the time on t3, but if I have any level of stress it can knock the whole balance out again. Takes time to get it back on track.

It might be worth you looking on Dr Lowe's website.

It took me over a decade to get a diagnosis, for things to become, 'bad' enough and consistent enough, to show on a blood test. (was something/wasn't something!) Not sure if I ever had antibodies tests. But rise and fall of levels should have indicated Hashi's to a specialist, surely??

Gp's tired telling me it was everything and anything, including anxiety and depression. But we know our bodies better than anyone - including GP's and specialists.

Button11 profile image
Button11• in reply toUrsaP

Hi UrsaP I don't know I don't know what caused anxiety I just went to gp as I pick the skin around my fingers and she said oh it's anxiety I'll send you to see a councillor (who was a bitch, completely grilled me) then she sent me for CBT (which I've had 3 courses of which is why now this gp is going towards meds.

Stress definitely triggered this off with moving around the country and loss of 2 grandparents but it feels like it's always been there underlying but the massive stress brought it out more as I've always had tests over the years for thyroid with symptoms I've had (also runs in fam)

He just said firmly he does not believe it to be my thyroid at all but what if the anxiety is caused by something else not the anxiety being the route cause. Seeing it took you a decade I have a long way to go then :(

Button11 profile image
Button11

Hidden haha I know I was the same asking about some absorption issue as I was b12 deficient and vit d now folate too but he says no as testing for celiac was clear and I also don't have pernicious anemia. Someone said you need to take K2 for the vit d to be absorbed too but my gp didn't say this was from forums on here and a lady I saw at craft fair who did holistic medicine

Marz profile image
Marz• in reply toButton11

Low B12 can become a neurological issue with a result below 500. Low B12 = Low mood/anxiety and other issues. Do not stop supplementing now the injections have ceased.

Button11 profile image
Button11• in reply toMarz

Marz I've had it tested twice since and was above the NHS level so my gp said it's fine said I just needed a boost after a natural dip when it went to 188 (lowest 200) someone mentioned some b12 tablets but I can't remember what they were because others I took sent me to the loo but that was before I started probiotics so I think they've helped my gut and probably absorption?

Quasarlis profile image
Quasarlis

I have Hashimoto's desease .. Here is my Endocrinologists reply when I asked him as to why it was never tested for or even mentioned, I have also added his comments on T3 medication and his statement on Free T3 and reverse T3 .. This is a clinical specialist, a biological scientist for the want of a better term who is being paid obscene money by the NHS ... Seems to me that all he is interested in is keeping his VERY well paid position by not rubbing the NHS up by prescribing T3 and as well all know bumping us off with medical book jargon and fabricated statements ...

''Free T3 as well as Reverse T3 are not generally used in helping with titration of levothyroxine dosage. The general aim is to keep the TSH in the normal range''

''Thyroglobulin antibodies and thyroid peroxidase antibodies; I appreciate these are high and this is not at all surprising as the vast majority of patients who have an under-active Thyroid (primary hypothyroidism) in the UK, either have it because they have had an operation to have their thyroid gland removed or they have got autoimmune Thyroid desease which may sometimes be called Hashimoto's desease''

''Having the presence or absence of antibodies or antibody levels does not make any difference to the overall management plans for someone who is known to have undetactive thyroid. That is the reason why you didn't have an antibody test measured after you saw me. To reiterate, being in levothyroxine only makes no difference to the overall natural history of the desease. In other words this is not going to alter the course of action in causing more damage to your Thyroid as your Thyroid is not functioning for many years''

''Combining T3 (liothyronine) to levothyroxine (T4): As I wrote to your GP who asked this question a few weeks back, combining T3 and T4, in my opinion does not give any additional benefit. We do not have sufficient evidence to recommend this combination and moreover there is increased risk of causing harm from over replacement in combination treatment with liothyronine and levothyroxine. Therefore I would not recommend this combination treatment. I do appreciate that this might not be an encouraging answer but I do not think that this is the answer to your symptoms''

These were his comments after he was given my Blue Horizon blood results which showed low conversion, high TSH AS WELL AS High Free T4, HIGH reverse T3, Low but in range Free T3, extremely high antibodies of both types, Vitamin D deficiency The bloke is full of excrement up to his eye balls!!!! I can't believe that these so called specialists are allowed to make up stuff that simply isn't true! He mentions 'We do not have sufficient evidence to recommend this combination'' .... Actually there is loads of it out there, he just wants to keep his job by repeating possibly fabricated rubbish to keep the flow of T4, not prescribing T3, if only for a trial period to see if it makes me feel better AS HIS PATIENT so that he doesn't get told off by the NHS for costing them a bit more money and giving Mercury Pharmas monopoly the hump as they loose a part of a Levo T4 sale, costing them a few quid off their billions they make from their patent ...

IF I get to see him again I may well smack him around the face with his medical book and wallet, tell him what a charlatan he is and HAPPILY accept the conciquences!!

Quasarlis profile image
Quasarlis

And regarding his statement ' Either have it (Hashimoto's) because they have had an operation to have their Thyroid removed' ... I'm not doctor but how can you have an autoimmune condition that is producing antibodies to attack something that isn't there??? Antibodies are present in our bodies after immunisation or infection from viruses but lie dormant to a degree until there is a repeat infection to fight, Do I have that right? .. So how can someone who has had their Thyroid removed be continuously producing auto immune antibodies to fight something that isn't there???? .. Can this be true? Or is he speaking utter b*****ks? .. I think the 2nd answer is true ...

humanbean profile image
humanbean• in reply toQuasarlis

I imagine he was thinking of people with hyperthyroidism who might have positive TSI/TrAb antibodies which occur in people with Graves' Disease. If the thyroid is removed any Hashi's antibodies eventually disappear. The Graves' antibodies don't and may affect other organs e.g. the eyes.

Your endo's response absolutely reeks of "I couldn't care less, go away, don't darken my door again", and I'm not surprised you feel so angry about it.

Quasarlis profile image
Quasarlis• in reply tohumanbean

Possibly although he didn't make that clear at all ... He's a complete c**t who is only worried for himself and his salary

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