Beginners post: Thyroid antibody test results in plain English please

[Shylton]

Hi

I have been going back and forth to the GPs for quite a while as I believe I have a return of Thyroiditis. I have been told that one of my tests has come back not normal. My problem is that I don't understand the tests results and lost faith with Doctors years ago.

Below are my results, can someone please clarify them for me, in plain English.

ANTIGEN

RESULT (NORMAL RANGE)

Anti TPO Antibodies >1999.0 IU/mL 0.0-6.0

Urea and electrolytes

Serum sodium level 141 mmol/L [133.0 - 146.0]

Serum potassium level 4.4 mmol/L [3.5 - 5.3]

Serum creatinine level 68 umol/L [50.0 - 98.0]

Serum urea level 5.2 mmol/L [2.5 - 7.8]

GFR calculated abbreviated MDRD 76 mL/min/1.73m2 [> 90.0]

Below low reference limit

Serum chloride level 108 mmol/L [95.0 - 108.0]

Serum TSH level

Serum TSH level 1.3 miu/L [0.35 - 5.0]

Serum free T4 level

Serum free T4 level 15.7 pmol/L [9.0 - 19.0]

Serum free triiodothyronine level

Serum free triiodothyronine level 3.7 pmol/L [2.9 - 6.1]

[jimh111]

Your Anti TPO Antibodies are high. These antibodies attack the thyroid and can cause thyroiditis ('itis' is inflammation) and can damage the thyroid leading to reduced thyroid output and hypothyroidism. Your TSH, fT3 and fT4 are all within their reference intervals (values in brackets) which suggests your thyroid is still producing normal hormone levels.

You haven't described any symptoms but you mention your thyroiditis having returned and your Anti TPO Antibodies level certainly confirms this. Depending on your symptoms there may be various options. If it is just pain over the counter pain killers can be used. If you are having signs and symptoms of hypothyroidism then levothyroxine should be prescribed. Sometimes patients with thyroiditis develop hypothyroid signs and symptoms before the thyroid hormone levels appear to fall.

With these high antibody levels there is a strong chance that you will become hypothyroid sometime.

[Shylton in reply to jimh111]

Hello jimh111, Thanks for info. I was diagnosed Hypo in 2002, and had Thyroiditis and goitre by then and had put on a ton, went from size 12 to 20. I had been going backward and forward being sent to various doctors for three years prior looking for a diagnosis. My bloods tended to be within range but my symptoms was always totally erratic, like a switch being changed. This time round yet again it took years to convince the doctor to get my antibodies checked as my bloods kept coming back in normal range - they are rarely out of range. I only found this sight last year which I have found very helpful and am now taking a more proactive determined approach with the medics.

[jimh111 in reply to Shylton]

This throws a different light on it. I had assumed you had never been hypothyroid. Are you on thyroid medication at the moment? If so, you are perhaps a little undermedicated. There are claims that going gluten free lowers thyroid antibody levels. This doesn't seem to be true except perhaps for a few patients who have gluten antibodies (can't remember the correct terminology). However, as you have been diagnosed coeliac this is academic as you have to be on a gluten free diet.

You clearly have a lot of autoimmunity with your coeliac and these high TPO antibodies. If you are taking thyroid hormone you should get your doctor to prescribe the gluten free form, either Teva brand or a liquid form.

Since you have quite pronounced symptoms I would insist your GP refers you to an endocrinologist to sort out your thyroid. Breathing and swallowing problems are not trivial. No doubt your abnormal weight gain contributes to these. I would take someone along with you to the GP so that you don't get fobbed off. Your antibodies are the highest I've ever seen, the '>1999.0' means it's off the lab's scale. So, you were clearly vindicated in asking for them to be checked. The GP has missed this possibility so they should accept that you need specialist care.

[SlowDragon Administrator in reply to jimh111]

Teva is actually the only lactose free Levothyroxine

All brands of UK Levothyroxine are gluten free.

[jimh111 in reply to SlowDragon]

Thanks for this. I'm not thinking clearly. Just been switched from AMCo to Teva liothyronine and it seems to not be working! Will give it a few days before submitting a yellow card. I will take more care in the meantime.

[SlowDragon Administrator in reply to jimh111]

Also there are very very many Hashimoto's patients who do not have coeliac but are confirmed with official medical diagnosis of gluten intolerance. These two diseases are very similar in result, but gluten intolerance is much harder to test and diagnose and therefore often missed.

[jimh111 in reply to SlowDragon]

Yes, I saw a study that detected gluten intolerance in about 8% of hypothyroid patients and found for these subjects only gluten free did help. Sorry I can't locate the study.

[SlowDragon Administrator in reply to jimh111]

It's actually more like over 80% with Hashimoto's benefit from Gluten free diet (including 5% coeliac)

[jimh111 in reply to SlowDragon]

Evidence? Bear in mind that most hypothyroid patients have never heard of a 'need' to go gluten free and around 90% do fine ncbi.nlm.nih.gov/pubmed/123... .

[SlowDragon Administrator in reply to jimh111]

bmcpublichealth.biomedcentr...

From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].

onlinelibrary.wiley.com/doi...

The overall prevalence of thyroid dysfunction has increased from 2·3% to 3·8% (1994–2001).

Various links with information on leaky gut and gluten issues being present in autoimmune disease.

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[jimh111 in reply to SlowDragon]

Sorry for drifting off topic. The references to gluten are just comments from people with books / products to sell, they are not accredited research studies. These people although perhaps well intentioned harm thyroid patients because they distract us from the underlying causes and undermine our credibility.

[SlowDragon Administrator in reply to jimh111]

Well many, many people on here with Hashimoto's report finding strictly gluten free diet helps and that finally antibodies begin to fall steadily when gluten free

[jimh111 in reply to SlowDragon]

Antibody counts fall when the throid packs in or is removed. Certainly going gluten free seems to resolve vague gut symptoms in patients with gluten antibodies but who are not coeliac. Much of China is gluten free but they still have autoimmune thyroditis and of course most hypothyroid patients recover without a gluten free diet. I'm essentially doubting the 80% claim and I think we should not bother wtih online bloggers as they usually have a book to sell and a need to produce an 'interesting' commentary every week.

[jimh111 in reply to jimh111]

I'd like to withdraw my 'well intentioned' comments in the case of this blogger thyroidpharmacist.com/check... .

rootcology.com/

[Angel_of_the_North in reply to jimh111]

Define "fine". I think fine means that the patient has given up complaining and is probably taking a ton of other meds for high cholesterol, high BP, constipation, palpitations, depression, poor sleep etc and is nowhere near how a healthy person would feel. But their bloods are in range.

[jimh111 in reply to Angel_of_the_North]

A fair question. 'fine' is defined as can see no difference between the patient group and healty controls, as in the Saravanan study. In general terms getting back to how you were before you suffered from thyroid disease (assuming not congnetal) or as good as the heathy person next to you.

Your description is definitely not 'fine'. Saravanan checked for more subtle symptoms and found 85% to 90% of patients with primary hypothyroidism fully recovered. The remainder perhaps need some T3. However, the essential point is that there's nothing to suggest gluten had any role in the 90% who recovered.

[Shylton in reply to jimh111]

Hello, so many thanks for explaining things to me. I kept reading the results of the antibodies and thought I must be reading it wrong. In 2002 my antibody readings was also off the charts according to the private consultant I finally went to to try to find out what was wrong with me. This was after years of doing the hospital circuit and being told it was psychosomatic. I was put on Levo and although it helped a great deal, lost weight got my energy back etc etc. I still felt unstable but just got on with life as it was the best I had been for years.

When I gave up smoking in 2009 things started going wrong again and persuaded the GP to refer me to the specialist but all he did was practically accuse me of wasting his time, but he did order tests for Addisons, which came back negative. Since then I have not been referred but have carried on deteriorating but the GP wouldn't check for antibodies as the other bloods kept coming back in normal range however historically my bloods have generally come back normal. She said the breathing problems was due to the weight gain that I had put on again however I pointed out that I complained of breathing issues before the weight gain. Finally a trainee Dr came to the practice and I persuaded him to check for antibodies and these are the results I posted.

Considering this is such a wide spread condition it is hard to understand how there can be so much ignorance about it within the medical profession.

[SlowDragon Administrator in reply to Shylton]

Smoking can suppress antibodies and therefore giving up smoking can cause antibodies to rise (not a reason to go back to smoking though!)

verywell.com/cigarette-smok...

There are some trials going on looking at tobacco derived medication to suppress antibodies

thyroidpharmacist.com/artic...

[jimh111 in reply to Shylton]

I'm afraid your story is quite common. The ignorance originates from the endocrinologists and passes on to GPs. I would see your GP and point out their error regarding antibodies. Remind them of your difficulty swallowing and ask for a referral. I really think you need a calm assertive person with you. It is quite likely your antibodies are triggering irratic output from your thyroid. It needs specialist care and perhaps an ultrasound to investigate your thyroid.

[NickP1 in reply to Shylton]

Yep. Been there done that. TSH T3 and T4 all perfect for years. Wasn’t until a Serbian spinal surgeon suggested I get an ultrasound along with more blood tests I was diagnosed with hashimotos. Anti TPO 1500, should have been below 30.

If Uk doctors had bothered to do this check years earlier, when issues started to arise, I may still have my thyroid. Unfortunately too late. Total thyroidectomy 3 years ago. Th last year or so before that it was pretty bad.

My advice don’t take no for an answer, it’s your health, nobody else’s.

[ling in reply to NickP1]

How have things been since the thyroidectomy?

[NickP1 in reply to ling]

If I answered this honestly at the moment i'd probably get banned for bad language.

Firstly you're on your own in the UK, as the medical profession here, where thyroid issues are concerned are a shower of s**ts.

It's a total yoyo affect, you think you've got it sussed and nope. Manufacturer will change the recipe or there will be a shortage of supply. On top of that you have to spend months getting the dose right. Then when you do the manufacturer stops production, thank you RLC. So, you start all over again...

If I had known ten years ago that my thyroid had an issue, I would have sold everything I owned to get it healthy to insure it didn't have to be taken out.

Sorry if this sounds a bit negative. There are thousands upon thousands of success stories, but you don't hear too much of those on here because those succes stories are getting on with living...

[ling in reply to NickP1]

Thank you very much for sharing. Pardon my ignorance ... u were first diagnosed as hyperthyroid, hence the thyroidectomy? In your profile u wrote it seems u had hashimoto's for many years. Hashimoto's is a type of hypothyroidism? Why would u need to have a thyroidectomy then?

Pardon me for trying to clarify. I have graves so I do not know much about being hypo. Yet maybe.

[NickP1 in reply to ling]

The few months before the op I was in a mess physically and mentally. In hindsight these issues had been going on for years.

I remember the day before the op I was in a London railway station, went to use the loo when I came out my mind was blank had no idea where I was what day it was or why I was there. I was going from hyper to hypo. It was such fun, not..

My thyroid had grown to such a degree that it was getting difficult to swallow and breath fully, but from the outside didn't look to bad.

I paid to have the op in the spire hospital Bristol, the surgeon was very good, hardly a scar, maybe 4 to 5 cms long and hidden in the lines of the kneck.

I spoke to the surgeon the day after the op, who said it was about 8 to 10 times bigger than it should have and a right pain in the arse to remove, which may have been a bit of an exaggeration. Also there were 2 small tumours which they removed with the thyroid which were cancerous. I think most people have these but never know. I didn't bother with RAI.

The only weird thing that happened was two days after the op I remember after the feeling of a huge adrenalin rush, akin to having a strong electric shock. Lasted for maybe 3 or 4 minutes.

The rest as they say is history..

[ling in reply to NickP1]

Did u have to get treatment for the cancerous tumors?

The strong electric shock u mentioned, did u black out? Were there after effects from that episode?

[NickP1 in reply to ling]

No, I elected to forgoe RAI treatment. My belief was that it could do more harm than good.

No after affects at all. It could have just been a massive rush of Adrenalin.

[ling in reply to NickP1]

Thank you for your reply.

I might have had similar experience as yours re the electric shock. Though yours sounds like a once off.

I already had graves at the time though it was undiagnosed and untreated. I couldn't for the life of me figure out what it was but it was the closest I came briefly to passing out. At that time I was in a period of chronic extreme stress and getting barely any sleep. It's now morphed into on off jittery attacks in the epigastric area.

Many thanks for sharing. I'm trying to figure out these attacks I get

[Angel_of_the_North in reply to jimh111]

But both your free T4 and Free T3 are fairly low in range.

[SlowDragon Administrator]

What symptoms are you getting?

Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Essential to test vitamin D, folate, ferritin and B12.

These are often too low and need supplementing, but important to test first.

Always get actual results and ranges. Post results when you have them, members can advise

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Shylton in reply to SlowDragon]

Hello SlowDragon

Thank you for answering. I was diagnosed coeliac and slipping hiatus hernia a few years ago. I have breathing and swallowing problems with swollen tongue and what feels like internal swelling. I have rhinitis which also gives me problems breathing. I feel that my brain is not working properly and I keep using the wrong words grammatically. I also forget the word I want to use. I get a lot of joint and muscle pain as if my muscles have lost their stretch. Thank you for the links. My brain doesn't seem to assimilate information the same way as it used to, but will try to read everything - whether I understand anything is debatable.

[SlowDragon Administrator in reply to Shylton]

It’s extremely common when coeliac or gluten intolerant to be low in vitamin D, Magnesium and B vitamins, especially B12

Ask GP to test these plus folate and ferritin

Swollen tongue is likely low B12

Rhinitis May be dairy intolerance. Also common with Hashimoto’s

[SlowDragon Administrator in reply to Shylton]

Also as you are on Levothyroxine, your dose is possibly slightly low.

FT4 should be towards top of range and FT3 at least half way in range, ideally over 5

Very likely with gut issues that you would benefit from small dose of T3.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many.

rcpe.ac.uk/sites/default/fi...

Having coeliac, gluten intolerance and/or low vitamin levels impairs conversion of T4 to T3

Selenium supplements can help improve conversion

[silverfox7]

The aim of thyroid medication is to get both your FT4 and FT3 in the top third or even the top quarter of their respective ranges. Your FT4 is over half way but doesn't make it into the top quarter so there is room for adose increase which in theory should help both FT4 and in turn FT3. Your TSH is in range but many of us feel better when it is less than one.

Now you say you don't understand results but I'm also going to assume that you aren't familiar with how your thyroid works so my apologies if you are up to speed on that. But it's easier to embrace both scenarios when things aren't working as they should.

The TSH isn't a Thyroid but a pituitary messenger knowing on the Thyroid door to Gemma it it needs to produce more so the higher your TSH the more out of whack your reading can be but it's not always accurate so bettercto concentrate on the two frees so called as that the free parts available in you blood and what is tested. Our body should, naturally product T4, a storage hormone and a very little T3, the active hormone and without getting too technical T4 loses a iodine molecule to become T3. So when we have a problem we are given more T4 (Levo) and our bodies should convert that to the T3 we need do we need to to given enough T4 for that to happen. If FT4 is higher in its range to our FT3 in itsxrange we are not converting well. Yours is a little off on that so low in FT4 and then not converting it properly into T3 and as T3 is the really important bit that's why wecfeel rough

You thyroid needs other help to make it function well so we need to look at that as well So youbneed to get tests done for Vit D, B12, folate and ferritin but results need to be optimal, not just in range (SeasideSusie is the expert here so look on her posts forchrlp sndcadvice) These are also important as they help with the conversion of T4 to T3 though it takes time and they also help with some symptoms you may have so these are important on three levels

So I feel you need an increase and to get Vits etc checked and improved where necessary and that could go a long way towards getting a better conversion as well

[PaulB]

Hi

Looks like early days of Haahimoto’s.

Take it you have symptoms but TSH OK so no treatment?

Paul

[Shylton in reply to PaulB]

I was diagnosed in 2002 with Hashimoto's - by then I had really high levels antibodies but bloods within range, and of course Thyroiditis. I am currently on 100mcg Levo. I have various other symptoms plus obstructive sleep apnea which I use a cpap every night. I am being referred back to ENT as my ongoing problems with swallowing and breathing has worsened. My bloods have rarely been out of range but always felt unstable whereas my daughter is stable. Go figure.

[SlowDragon Administrator in reply to Shylton]

Then to improve stability you likely need small divided dose of T3 through the day, to keep more level.

[PaulB]

Hi

My thyroidperoxidase anti bodies were really high, in the 1000s so in US they tested for ICA too, normal procedure apparently when have an autoimmune attack on thyroid. Any how my Islet Cell Antibodies were really high too as immune system was attacking my pancreas too. So advise keeping an eye on HbA1c as I steadily became diabetic.

Paul

[Shylton in reply to PaulB]

Thank you, if I can I will get the doctors to test for ICA - it is such a battle with them all the time to convince them something is going wrong.

[Eddie83]

Chances are good your gut has been compromised. There are dozens of "alternative" docs on youtube who talk about how this happens. Suggest you look for the "Root Cause" book by Wentz on bn.com or amazon. Many people can lower their antibodies by checking for pollutants such as heavy metals, making dietary changes, and using nutritional supplements to boost nutritional levels lost to compromised gut.