Thyroid antibodies >4000 - normal in ALL hypothyroid patients - or so the neurologist says - ????

Can I please just check the latest dribble my doc has told me.

I sent him my thyroid test results ( had to do them privately as NHS does not offer antibody tests - so says my doc)

no reply.

Saw him today, and he said that he had spoken to a neurologist, who said that thyroid antibodies stay with anyone who is hypothyroid for life and that it is normal to have thyroid antibodies.

I checked with my doc - surely not as high as mine ( above the top of the scale >4000) - he said I should discuss it witht he neurologist ( who is not a thyroid specialist - I asked the doc to be sure)

Now, - am I going mad or is this dribble?

my understanding is that you may have thyroid antibodies if you have an autoimmune thyroid condition, but you do not have to have them.

my understanding is that high levels of thyroid antibodies are not the norm

my understanding is that these should be monitored as the performance of your thyroid and therefore the level of your meds will vary on how much of the thyroid is dead due to attck by the antibodies?

please can someone help explain to me what the doc has told me?

BTW - I am asking as I have given up trusting anythign that comes out of my doctors mouth - sad, but a lesson learnt the hard way over thas couple of years, and the advice from thryoid UK and Health Unlocked folkes is the only thing that has helped me over the last year.

Big Hugs,

M

43 Replies

oldestnewest
  • I'd be interested in any replies too, as my endo has told me my TgAb result of almost 2000 means nothing!!

    Sorry we're in the same boat x

  • I dont know much about TGab, they are not the standard thyroid antibody test, and are really only used as a marker for patients who have had thyroid cancer, as any change in them can indicate a possible problem. Having them does not mean you have cancer btw.

  • They are less common than TPO ones, but from all the literature I have read, they mean the same thing - that you have an autoimmune thyroid issue. But apparently not, according to my (ex) endo!

  • I didnt think it did either, if I'm hosest, but like I said, I dont know that much about TG and TGab. I dont have suspected cancer and I dont have graves or hyper so there has never been a need for it to be done for all I know it could also be sky high, but its not really relevant to me, so Ive never read that much about it.

  • Hi HarryE,

    Sorry to hear that - fingers crossed we both get some useful advice :-)

  • Not sure why your GP is consulting with a neurologist about this, but then I have no idea why GP's do half the things they do do.

    Your antibodies do seem high, however with no range just saying they are over 4000 is meaningless, although the fact that they are over whatever is considered the top of the range suggests that they are high. The NHS standard TPO, stats over 1000 0r 1500 , presumably they are different for private testing of which I have no knowledge.

    The NHS does NOT monitor antibodies, and considers them relevant only for the diagnosis of auto-immune conditions, and they do tend to stay with you for life IF you have them( I suspect the doctors remark is an error in that they are discussing you and the fact that you have antibodies, not that everybody has them), although you can reduce them with diet and or treatment apparently, but this is not available on the NHS (as far as I am aware). It is an immunologist that treats anti bodies however there are very few immunologists in the uk that do, most are paediatric or allergy specialists, it may be an option private, but I have never looked into this as its not an option for me.

    Once you have tested positive for antibodies, thats it, it doesnt really matter how high they are, just that you have them and that they will destroy the thyroid. The higher they are the quicker that happens (and by quicker I do not mean quickly, it will still take several years normally). As you are treated the same way whether you have antibodies or not they have little relevance to treatment. You will be on replacement therapy for life whether you have anti bodies or not.

    Treatment (in general) is based on thyroid function, as your thyroid fails your medication levels may need to be increased, as would happen with or without antibodies.

    It is normal for everybody to have some antibodies at some point in their lives, but until they get to a certain level you would still be considered as not being diagnosed positive to having them.

    I wouldnt worry about it in the least, once they are there, they are there to stay, and as they dont affect actual treatment there is no point in stressing over them.

  • Rubbish...total rubbish....antibodies make us extremely poorly....I have high TPO antibodies and Tb11(TRAB) antibodies.....both very dangerous.....I have Graves Disease...and I had to have my thyroid removed in 2013....I am now very ill with hypothyroidism....plus Graves Eye Disease.....which is still very active even after 3 years .....I need several operations to repair my double vision, fatty eye lids, Misaligned protruding eyeballs

    ....the antibodies have caused massive ovarian cysts resulting in my ovary removal in 2007, etc etc.....these antibodies cause havoc All over the body and should NOT be ignored....UK doctors ignore this because they haven't a clue...

    ..Research research research....it's not all RUBBISH...as my GP thinks....don't give in....there is lots of support groups for Hashimotos and Graves Disease on Face Book....people all over the world are consulting with them... They lead you to all the best websites with extremely intelligent information.....my doctor told me not to take any notice of the rubbish in the internet.......sheer rubbish...top specialists put their info on the Web....and top Legitimate Clinics and Hospitals are on the Web......!!!!!!!!!

    xxx big hugs xxx

  • Mine are well over the top limit too, yes they make you feel ill, I know only too well how ill they make you feel!

    I have answered the questions asked there is nothing wrong with what I answered, your antibodies do not affect the treatment you are given.

    Go shout rubbish at someone else, and keep your abusive attitude to yourself. You are out of order.

  • I think you gave a full and informative answer shame that people have to be abusive if their opinions differ, this site is now getting a name for this with other HU sites such a shame x

  • Helen, I think Popeye was rubbishing the GP's dismissal of high antibodies causing problems, not Susymac's excellent post.

  • Susy, I don't think Popeye was being abusive to you, but was shouting Rubbish! at the GP's dismissal of elevated antibodies causing problems.

  • I agree with clutter. Popeye's post seemed aimed at the doctor, not at you. It is unfortunate that she replied to your response rather than the original post. If course I could be wrong.

    As clutter says, your response was excellent.

    Carolyn x

  • Oppps so sorry I upset people I didn't mean to....I really did mean that doctors are rubbish....so so sorry....

    xxx big hugs everyone concerned xxx

  • Easily done. Sometimes it is not obvious who we are replying to on this platform and it is sometimes difficult to read the context when you are not face to face with someone.

    Carolyn x

  • Oh Susymac.... So So sorry I upset you....I meant the doctors are rubbish...I sincerely apologise

    But on re-reading the your comment at the end you said 'I wouldn't worry about it in the least etc etc ' that is what I was upset about...because it is a worry ....

    And if you suffered with Graves Eyes disease you'd understand fully what I was meaning....

    xxx big hugs xxx

  • I do have graves eye disease andvthanks to the doctors I am now fine with it eyes are slightly misaligned but I'm not risking surgery I am hypo and on full replacement thyroid checked every three month there are some doctors out there that now what they are doing by the way I have S.L.E g

  • Hi susymac,

    sorry - I had posted the fullr esults somewhere else here on HU, they are:

    Thyroglobulin antibody >4000 (range 0-115) - so well over what I would assume is normal

    Thyroid peroxidase antibodies 90 (range 0-34) - also well above norm

  • TPO antibodies are roughly 0 - 34, negative (although most people have them)

    35 - 150 - positive

    >150 significantly raised

    Im in the significantly raised camp (at over 1000), although as I mentioned, they dont actually do anything about them, mine have been tested 3 times in the last 4 years, they never drop and they have never offered any advice, because they dont know what advice to offer (ignorance)

    I dont know much about TGab, as mentioned to Harry. Its the TPO ones that matter in diagnosing auto immune thyroiditis, and treatment doesnt differ whether you are negative possitive or significantly raised under the NHS, your just left to struggle on best you can.

  • Mrs Somerset. ....Those results are very worrying...

    xxx big Hugs xxx

  • Mine certainly didn't affect treatment - they wouldn't give me any! Oh well, thanks

  • Same here HarryE to begin with. I kept going to different doctors until I found one that would.

  • I did it myself! But I have at least now found a doctor who backs me up!

  • I am so very sorry you are being treated so disgustingly .....it's appalling how UK doctors treat thyroid problems.....I have been in the same boat...but now my Endo has agreed to work with me...and has helped a great deal...it's taken me 3 years to get where I am...my doctors are rubbish...BTW I have high antibodies TPO and TB11(TRAB)

    And they are a effecting ALL of my body....my doctors are in denial....

    xxx big hugs xxx

  • The NHS has a duty to do thyroid Antibody tests

    High thyroid antibodies are indicative of severe disease /auto immune attack on the thyroid and likely severe symptoms IMHE

    Seems to me that your doctor and the neurologist need to go on Thyroid refresher courses pronto

  • Hi really fedup123,

    I have found out ( by myself - no help from docs) that autoimmune diseases are often related - i.e. if y ou have one, it is worthwhile checking for others.

    I have tried to get my doc to test for years, but he refuses. Had he done so, he may have looked into other illnessess and noticed my pernicious anemia.

    as it is he left my pernicious anemia untreated for 3 years and ehre I am now, unable to walk, talk properly and bedbound unless transported by wheelchair ( arms too weak to move chair - require assistance for everything)

    I do encourage people who have an autoimmune diagnosis to seek further testing from their docs, but as I can attest - this is nigh on impossible to get on the NHS - even when you present with clear symptoms.

    my concern now, is for hashimotos encaphalopathy or hyperparathyroid disease - the tumor is apparently usually benign and only takes 20 mins to remove, so not onerous to fix really - so am searching for answers .

    I do appreciate everyones advice - I may not agree with it all, but I do take it on board, and research further in the directions I am led by HU forum folks.

    Thank-you to everyone who has taken the time to reply, I hope there is some useful advice here for others as well as for me.

    Big Hugs,

    M

  • M. If your bedbound as a result of your doctors refusal to test for PA or Thyroid he is culpable and shoulc be sued and reported to GMC its disgraceful

  • Hi reallyfedup123,

    I understand your point of view, I do, however I have never been one to sue people, I suppose it comes from having a mother who was a judge and other legel relatives - it opens your eyes to what a cut-throat nasty world it is.

    I would quite frankly, just hope the doc would pull his socks up and DO something, rather than wasting his efforts talking about how he needs to wait to hear from someone he just made an appointment with, for no particular reason, rather than him filling me with pain killers I keep telling him are not helping much.

    The things is, I do my research, I gather facts, references, research papers, all the hard work essentially, and all I ask is for him to a) do a couple of basic tests and b) pay attention to test results and use them to help me get better.

    I have no problem with a GP not knowing everything about every illness - that is normal - they are GP's after all - but as my first point of contact I do expect them to care, to try to find out what is wrong, to put me through to experts in the relevant fields ( not a neurologist for an endocrine issue) and to listen to the facts.

    I suppose the difficulty is when you are paid a huge amount of money for 3 x half a days work a week, it does expand the ego and that gets in the way of listening to your patients.

  • I totally agree with you...Mrs Somerset...I am in that same boat...my GPs surgery have labelled me a hypocondricat with Bi-polar disorder when all I needed was correct thyroid medication ....and my B12 was low but they wouldn't give me meds...I now buy my own Methlycobalamin sublingual tablets...very high dose....and it's working wonders for me....tshhhhhh

    xxx big hugs xxx

  • There is quite a lot of information out there - am sure you are aware - about reducing anti-bodies. Izabella Wentz has a website and also written a good book - Hashimotos - The Root Cause. My thoughts are that if you learn one thing from a book then it is worth the read :-)

    Also Hope for Hashimotos - by Dr Alexander Haskell - an informative read. He also has a website of the same name.

    I think the problem is that auto-immune issues are too complicated for Docs to deal with so try to simplify matters by saying they don't really matter. I have tried many things to reduce mine but they still linger.... :-) We are individuals and seem to be affected differently. I too have Crohns so agree with checking out other auto-immune issues. VitD has been a huge help with that.... My TPO ab's are over 5000 - but touch wood I am feeling OK.

    Please do not worry about Hashi's and the brain - they say gluten molecules can also penetrate the blood brain barrier. Datis Kharrazian has written a book - Why Isn't my Brain Working - lots of info there that I found interesting. A challenging big book :-) So I think the bottom line is - sorting and healing the gut lining. There are some good on-line summits too which may be helpful - in fact Izabella has one tonight. Details should be on her website ...

    thyroidrootcause.org

    thyroidlifestyle.com

    Do hope you soon feel stronger and please do ask if you would like more information if needed....

    M x

  • Hi Marz,

    Thank-you for those links - I will need to look into it in more detail.

    I was never oficially diagnosed with Hashimotos - and hte doc refused to do the antibodies test everyone said I should do, so I did it myself , and with the levels I got back, self diagnosed with Hashimotos, and have been trying to piece together what that means to me in the last few weeks.

    I have alredy made changes thanks to advice from Thyroid UK staff, and from HU forum folkes, that have had an effect - foods to avoid, when and how to take my levothyroxine etc, so continue the struggle to take my health and wellbeing into my own hands, as relying on the NHS is proving to be making me more ill, not better.

    Big Hugs,

    M

  • Maybe it's your GP who should consult a neurologist.

    I don't know about antibodies but here are a couple of links:-

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

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

    Part of an answer further down the page of the above link:-

    My answer is always the same: I resoundingly do not agree with the doctor. First, as my wife Tammy recently said, consider the prefix to the term "anti-bodies." The prefix means "against," and just like anti-freeze prevents your car’s radiator from freezing, anti-bodies against your thyroid gland, if they stay high, will, sooner or later, prevent the gland from working normally. Your symptoms and your extremely low basal body temperature strongly suggest to me that your gland is already impaired.

  • Hi shaws,

    I found those links interesting - I do look at thyroid UK regularly to remind me of the things I should be doing, but found this on the page of your first link to link into my query quite well:

    " It is perfectly possible to establish a firm correlation between the levels of antibodies present and the severity of the illness." (Thyroid UK)

    Thank-you

  • Theres no point taking levothyroxine unless both gut health and ferritin and folate are at correct level because youcannot utilise the levothyroxine without optimum levels of b12,ferritin and folate

    This has just been reiterated on the thyroid programme that aired on the web last evening

  • do you have a link please?

  • no but i will try and find one

    my daughter and grandaughters are only in the 200s

    my husbands were way off the scale in the 10,000s

  • thank-you - that would be great :-)

    your husbands results are much much higher than mine, how is he doing - does he feel unwell or are his thyroid meds working OK?

    I had assumed that because mine were above the top level reading that was as high as it went but your husbands are almost 3 times as high as mine, which makes me think perhpas I am not so badly off after all.

  • It was nearly 30 yrs ago that my husbands antibody tests were off the scale its only the last 8 years on armour thyroid that his health has been restored and he is able to enjoy life at age 72......before that on 1st thyroxine and then t3 he was fit for zilch

  • The NHS DOES DO ANTIBODY tests because my grandaughter has just read out the results of her test for them today

    Stupid lab though only did TSH which was low so refused to do free T4 and Free T3 knowing virtually whole family has Central Hypothyroid ...........another battle ensuing obviously

  • If my doctors asks for blood test the labs only do TSH and T4

    But my Endo manages to get TSH, FT4, and total T3....these are from a different lab.....I also requested on my Endo s bloods envelope extra tests as advised my one of my Graves Disease support groups...they did test the TB11(TRAB) and TPO which BTW were very elevated ...but they missed out T4, FT3 , RT4 and RT3... GD with TED ...thyroid removed 2013....I am now very hypothyroid...taking Levo 50mcg with T3 20mcg...my Endo has allowed me the up my T3 to 30mcg. So I'm having more blood tests in 5 weeks time...including a test for Myasthenia Gravis which he seems to think I might have too....so there is hope for us all...my Endo is listening and working with me at long last.....I do wish all medical staff were so helpful.....

    xxx big hugs xxx

  • When a goiter appeared, I had the full range of tests including antibodies. Referred to all the specialists, numerous blood tests and then a diagnosis. As anti bodies attack the thyroid, i am monitored 6 monthly. I have done everything possible to reduce them without success. I have read about gluten but gluten intolerance only affects some 7% of those suffering from an autoimmune disorder.

    The method of testing of the affect on the thyroid by antibodies is by testing TSH. I have this tested every 6 months and my thyroid is working perfectly well. I am aware of the arguments made by some that taking thyroxine supports the thyroid from damage. I am aware that over time - average of 17 years that the nodules in my goiter could become cancerous. I am aware that eventually the antibodies will take over and I will have to take medication(hate this idea). I am also aware that the goiter may grow and have to be removed and again I will have to take medication.

    I am tested regularly and following advice on this site have had everything added to my TSH test - B12 etc etc. My last test I asked for a further antibody check and as to be expected - although disappointing, my antibodies are still off scale and the consultant at the Lab wrote on the result form the importance of 6 monthly testing due to autoimmune thyroiditis.

    I am very happy with how I am being monitored and the level of service I have received from the NHS. I carry on eating as healthily as I can, exercising and forgetting that I have hashis. Mind over matter for me......

    .

  • Holby, what sort of antibodies do you have? I have been told they mean nothing & that there is nothing wrong with me! Obviously I have proved otherwise by making myself better with medication, but just interested in the very different view of them.

  • There are many relating to autoimmune disorders. I can look back at my very first test if you wish as the first test checks absolutely every thing to do with the thyroid. I can tell you that my peroxidase is off the scale - the lab just says over 1000 with a symbol which I can not produce. The three main ones tested are:

    1. Peroxidase (TPOAb)

    2.Thyroglobulin (TgAb)

    3.Thyroid Stimulation Hormone Receptor (TRAb)

    Other antibody tests are only carried out if you are suspected of having thyroid cancer.. If any of the three above are out of range then you do have a thyroid problems which should be monitored.

  • Yes, I have TgAb at over 2000, but the endo still reckons it means nothing! Needless to say, I won't be seeing him again :-)

    Thanks

You may also like...