Antibodies Enquiry

[PrincessAnnie]

Hi I’m looking for some clarity as to the impact antibodies have on you please.I had an appointment with the doctor today,I’ve been feeling pretty crappy for a few weeks now but last week was terrible with severe stomach pains,constipation,feeling nauseous and being extremely sensitive to the cold,my work has aircon and I actually had to come home on Friday due to the fact I couldn’t get a heat in my body.

I took my medi checks bloods I had done in July with me to show my results whilst I was on the 20mcg of liothyronine and that I felt that was slightly too high,I told him I had reduced it to 15mcg but due to the fact I was put on capsules I had to reduce it to 10mcg as I wasn’t able to split the doses.He said he would be very reluctant to accept those blood results and would rather do his own(I’m getting them done for the endo tomorrow anyway)and that he’s concerned I’m being ripped off by these companies😤he said he could get everything I get tested and when I mentioned I would like to keep checking my antibodies he said that they don’t really matter🤷‍♀️Am I loosing my mind here or aren’t your antibodies a sign that your immune system is attacking your body?

I’ve sent my own bloods off today to Medichecks so I’m curious to see the difference between those and the ones I’m having done tomorrow.On the plus side he prescribed me 20mcg liothyronine tablets so that I could split the doses,he did say not to be surprised if someone flags it so I’ll contact the pharmacy team tomorrow to state that I would like to be kept on that as I feel the capsules aren’t agreeing with me and that the tablets actually work out cheaper.

[greygoose]

Over-range antibodies are an indication that you have autoimmune thyroiditis - aka Hashi's - yes. So, it is a good idea to have them tested so that you know. However, once you know that you have it, there's not much point in retesting them. Antibodies fluctuate all the time, but the differences in levels do not indicate any sort of difference in the disease itself. If antibodies drop, it doesn't mean you're getting better, and if they rise, it doesn't mean you're getting worse. They tend to be highest just after an immune attack on the thyroid, when they have a job to do cleaning up the blood. When their job is done, they will again reduce in number.

So, it's far more important to test FT4 and FT3 than to retest antibodies.

[PrincessAnnie in reply to greygoose]

Thanks for your reply so he was basically right then🤦‍♀️It gets so confusing at times trying to keep up with it all,I thought reducing them put you in to remission🤷‍♀️

[greygoose in reply to PrincessAnnie]

No, I'm afraid it doesn't work that way. Remission is a strong word in relation to Hashi's, it's not like Graves'. But, you can sometimes have an extended period of euthyroidism after a 'hyper' swing, before becoming hypo again. But, that has nothing to do with the antibodies. And, eventually, the disease will run its course and the thyroid will be destroyed.

[PrincessAnnie in reply to greygoose]

I had radio iodine when I was first diagnosed with an over active thyroid which put me under,I had a scan after it which revealed there wasn’t much of my thyroid left so this confuses me even more🤦‍♀️

[Jazzw in reply to PrincessAnnie]

Ah—so did you actually have Graves as well? Did they ever do full Graves testing before blasting your thyroid with RAI?

If so then you are one of the unlucky people with both Hashi’s and Graves. That’s what they call rotten luck…

[PrincessAnnie in reply to Jazzw]

I was only ever told that I had an over active thyroid and that radio iodine was the best treatment for it,I mean you put your trust in these people so just go along with what they say🤷‍♀️After finally having had enough of being constantly told for 4 years that my thyroid levels were”in range” I requested all my medical records and that’s exactly what I discovered,I had both positive antibodies to begin with only no one thought that was important enough to tell me,the iodine will most probably put you under but that’s far easier to treat they said,who knew😤

[greygoose in reply to PrincessAnnie]

I'm so sorry, I had assumed that you were talking about TPO antibodies. But, looking back, you didn't specify which antibodies you were talking about. Perhaps you would like to clarify that now?

[PrincessAnnie in reply to greygoose]

Right now I have Thyroid Peroxidase Antibodies sorry for the confusion🤦‍♀️

[greygoose in reply to PrincessAnnie]

OK, but most of your thyroid has been destroyed, right? So, the antibodies aren't going to do anything much at all. And, if you don't have much thyroid left, there's no question of you going into any sort of remission. You are always going to be hypo whatever happens. So, it really doesn't matter what level your antibodies are.

[PrincessAnnie in reply to greygoose]

Thanks for the info,yes most of it’s been destroyed infact almost completely atrophic we’re the endos words🤷‍♀️ I just thought that with hashis if your antibodies were high then it was what’s called a”flare up”and when they were low then all was well🤦‍♀️Like I said it gets confusing at times when you’re just learning maybe one day I’ll be as knowledgable as you guys,Right now I’m just trying to get my levels to where I can start to live again.I feel bad now I’ll need to apologise to that doctor😏

[greygoose in reply to PrincessAnnie]

I shouldn't bother apologising, I doubt he even noticed! lol Besides, I expect he deserved a ticking off for something or other. Like not testing your FT3, the most important number, for example.

Just out of curiosity, how high were your TPO antibodies last time they were tested?

[PrincessAnnie in reply to greygoose]

When you say TPO I assume that’s the same as Thyroid Peroxidase Antibodies on the medi checks test right?

First private test was in February

73.70 IU/mL(Range<34)

Last test was July

54 IU/mL(Range<34)

I’ll just get the cheaper one from now on without the antibodies.My T3 is supposed to be getting checked,and to be fair to the endo,it was checked back in April after he requested it.I had asked for a full thyroid panel at the beginning of the year after having to see a mental health nurse,which wasn’t done,and was told by a doctor that if the TSH and T4 are showing in range then the lab won’t test anything else🤷‍♀️

[greygoose in reply to PrincessAnnie]

Yes, that's right. Thyroid PerOxidase Antibodies.

It very often is the way that labs won't test FT3 if TSH and FT4 are in-range, and will only test it if TSH is suppressed and FT4 is over-range. They somehow think that FT3 is only relevant if you are hyper - lord knows where they got that idea!

[PrincessAnnie in reply to greygoose]

Surely if your on combination treatment then it should be getting checked🤷‍♀️The only reason I’ve been checking it is the endo wanted me to wait six months,he wanted to put me on 20mcg straight away and up my levo to 100mcg🤦‍♀️Obviously that didn’t happen thanks to the knowledge in here.They honestly have not one clue how hard it is just to carry on with day to day living whilst your body is constantly fighting against you😤I’m honestly so thankful for this forum you guys saved my life and keep me sane🙏

Oh I don’t suppose you happen to know if you can buy the thyroid uk Christmas cards online do you?I don’t have a cheque book I’m afraid.

[greygoose in reply to PrincessAnnie]

In an ideal world it would always be checked. But, the truth is that doctors in general do not know what T3 is, nor its importance.

But, your body is not fighting against you anymore. I doubt if your immune system is still attacking your thyroid because there won't be enough left to attack. What is probably wrong is that you are under-medicated. And, no, they don't have a clue because they are not taught about the thyroid in med school. As far as I can gather, they spend one afternoon in seven years on the endocrine system, of which the thyroid is just a small part. And all they are taught is that being hypo is no big deal, it's 'easy to diagnose and easy to treat', the TSH tells the 'all they need to know', and all they need to do is give us a little white daily pill and get the TSH back to somewhere in-range - doesn't matter where - and their job is done! So not surprising some of us just never get well!

[PrincessAnnie in reply to greygoose]

You’ve summed it up so well greygoose as that’s exactly it,mind you I’ve found they just want to throw pills at you for anything,the mental health nurses first words to me were”would you like some anti depressant”,even though I’d already been asked my the gp if I’d wanted medication or to speak to someone🤦‍♀️

Yeh I know my body isn’t fighting against me anymore but it sure does feel like it sometimes😤trying to get yourself through four ten hour shifts,in a heavy job,a week can be trying but I have to say since the introduction of the T3 it was getting easier,up until now that is so hopefully a little tweak will help me.

I’ve bought the hashimotos 90 day plan and I’m currently reading that at the minute,I’m hoping to start implementing that soon,I was amazed by the connections to hashimotos,mainly the allergies as I’m terrible with those.

Thanks again for all your help it’s as always greatly appreciated🙏I’m sure I’ll be back on this week with my test results🤣

[pennyannie in reply to PrincessAnnie]

I think once you get your vitamins and minerals up and maintained at optimal levels you will feel stronger and on a much more level playing field to build up and find your optimal dose of T3 and T4.

I remember talking to you about your ferritin being around mid 40's a few months ago and I know it takes time to build - I spent over a year rebuilding my core strength vitamins and minerals but it is so worthwhile and I hope you found the chicken livers a useful adjunct.

[PrincessAnnie in reply to pennyannie]

Ah nice to hear from you again😁by the way I’ve named you my percentage lady🤣🤣well I was buying store bought chicken liver pate until I discovered the crap in it😤I know I know don’t shoot me🤦‍♀️It’s just so hard working full time,trying to cook everything from scratch and keep on top of a house.

Once I finish reading Dr Isabella Wentz book I’m committing myself to seeing the 90 day plan through so I’ll be on the chicken liver pate🙌

[pennyannie in reply to PrincessAnnie]

I would think since you have had RAI thyroid ablation your thyroid is now all but full disabled and as I understand things Hashimoto's dies with the gland so I 'm not sure you need to loose any sleep about this AI disease though of course eating clean and cooking from fresh will be preferable for good health and well being.

" No thyroid hormone replacement works well until ferritin is at least over 70 " :

I read this statement on several research websites that helped in my understanding when I found my ferritin at 22 and told - ' you are in range and good to go ' - quite where to go to, other than the knackers yard, I do not know - but seriously you do need to improve the ferritin and you will feel the difference and your stamina will improve to enable you to work full time and have a life.

[PrincessAnnie in reply to pennyannie]

You do make me laugh”the knackers yard🤣🤣🤣I’ve just purchased the hashimotos protocol 90 day plan and I’m committed to seeing it through, its very interesting reading.This is what I love about this forum,when I’m feeling down it always picks me up❤️

[greygoose in reply to PrincessAnnie]

You're welcome. Good luck!

[PurpleNails Administrator]

Doctors don’t treat the antibodies or autoimmune aspect, (they rarely acknowledge the autoimmune element).  

The approach is to treat the end result - which is the low function / low levels by replacing them.

If testing Thyroid peroxidase antibodies, an enzyme that is usually contained in thyroid is being released when the immune system attacks the thyroid & antibodies are cleaning up the substance which should be there.    

So antibodies doesn’t cause the issue they are as a result of it.  Antibodies can also fluctuate greatly and don’t always correlate to symptoms, So a positive “Thyroid Peroxidase Antibodies (TPO Ab)” signifies “autoimmune thyroiditis”  which is the most common cause of under active thyroid - but doctors don’t see a benefit in monitoring them, as treatment is based on levels. Might be interesting to know, but it’s not information your doctor will use to treat you. 

Some doctors will accept private labs, but most prefer you comply with the suggested treatment based on what they believe is sufficient testing without challenging them. If that worked you wouldn’t be seeking more help.

[PrincessAnnie in reply to PurpleNails]

That’s exactly what I told him,if it wasn’t for these tests I wouldn’t be getting prescribed T3🤷‍♀️

[PurpleNails Administrator in reply to PrincessAnnie]

Exactly, if you have your own evidence, you at least have grounds they re test should they try & dismiss results from private tests.  

Which antibodies were previously tested? 

When did you have RAI treatment? 

After RAI antibodies go up,  seeing as the treatment is designed to destroy much of the thyroid - to prevent level from being able to produce hyper levels - this makes some sense. But over time you would expect antibodies to go down & remain negligible as there is no thyroid. 

There is a huge cross over with antibodies for Graves & Hashimoto’s (autoimmune thyroiditis) both being autoimmune.

Your focus needs to be on FT4 & FT3.  

[PrincessAnnie in reply to PurpleNails]

I had RAI treatment about four years ago but I’ve only just discovered that I had positive TPO and TRAB back then.

[PurpleNails Administrator in reply to PrincessAnnie]

Positive TRab is taken as accepted evidence of Graves.

TPOab is often positive in both autoimmune conditions.  Highest in Hashis elevated in Graves. However there’s such a cross over with antibodies it why doctors don’t focus on them. 

TRab TSH receptor antibodies measure blocking, neutral & stimulating antibodies affecting TSH so it doesn’t always accompany hyper but very often does.  

What is your current TPOab ?

I imagine you have very little of any remaining thyroid.  Doctors do say there is a chance you won’t need replacement after treatment saying it’s designed to reduce the working thyroid but most do need full replacement after treatment.   

it usually takes weeks / months for the treatment to complete but in some cases the full effect can take years. 

Was it just TPO tested or any others TG, TSI, TRab? 

[PrincessAnnie in reply to PurpleNails]

All I have is a letter sent from the Endo to my Gp stating the following

This ladies Anti-TPO was strongly positive at 971.8U/ml. TRAb was also positive at 6.9U/L. Vitamin D was satisfactory. This lady will be reviewed at the clinic in six months time.

[PurpleNails Administrator in reply to PrincessAnnie]

They never add range but by most examples in forum those are both really high.

This was a historical result? Or recent?

[PrincessAnnie in reply to PurpleNails]

This was four years ago when I was told I had an over active thyroid,I can’t see them on any of the blood results I have infact if it weren’t for the letter from the endo to my GP then I wouldn’t even have known.

[PurpleNails Administrator in reply to PrincessAnnie]

you have a recent TPO? Im guessing Trab was never retested.

[PrincessAnnie in reply to PurpleNails]

Not that I know of🤷‍♀️I don’t think any of my antibodies were retested on the NHS.The two auto immunity ones on the Medichecks test are

Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies.

I get confused with TPO and TRAb sorry😏

[SlowDragon Administrator in reply to PrincessAnnie]

All I have is a letter sent from the Endo to my Gp stating the following This ladies Anti-TPO was strongly positive at 971.8U/ml. TRAb was also positive at 6.9U/L. Vitamin D was satisfactory. This lady will be reviewed at the clinic in six months time.

What were thyroid levels when this test was done….ideally TSH, Ft4 and Ft3

With such high TPO test suggests Hashimoto’s and Graves’ disease

Are you now on strictly gluten free diet or dairy free diet

Both are always worth trying. Probably starting on gluten free as it’s easier

What were TPO and TG antibodies on recent Medichecks test?

[PrincessAnnie in reply to SlowDragon]

I would need to sit and go through all the copies of my blood results to see if I can acquire that info Slow Dragon.On my referral letter from the GP to the endo it states the following

Blood tests were taken and are unremarkable with the exception of a Free T4 of 40.4 and TSH level of <0.1.

I’ve just purchased the hashimotos protocol 90 day plan so I’ll be following that shortly.I’ve just done a Medichecks test on Monday and I’m awaiting the results,last test was in July with the following results.

Thyroglobulin Antibodies 12 IU/mL (Range<115)

Thyroid Peroxidase Antibodies 54 IU/mL(Range<34)

[PrincessAnnie]

I’ve just sat and looked it out and tallying up the dates of my first appointment with the endo it’s as follows.

TSH <0.1

Free T4 31.3

Free T3 8.2

There are no reference ranges supplied but I’m sure I read that they must provide the reference ranges and this is made clear under Data Protection Legislation🤔Don’t ask me where I’ve read it but I’ve made a note of it.

[SlowDragon Administrator in reply to PrincessAnnie]

TSH <0.1

Free T4 31.3

Free T3 8.2

Those sort of results suggest Hashimoto’s…..assuming ranges were Ft4 12-22 and Ft3 3.1-6.8

Nether Ft4 or Ft3 much over range

[PrincessAnnie in reply to SlowDragon]

See this is what I thought so I don’t see why I was given RAI🤷‍♀️

[pennyannie in reply to PrincessAnnie]

Didn' t you have a TR ab reading - I thought I remember seeing one ?

[PrincessAnnie in reply to pennyannie]

Yes I did I’ve posted them in comments above.

[pennyannie in reply to PrincessAnnie]

My understanding is that Graves is considered life threatening if not treated and will take precedence over whatever other antibodies are found over range and positive.

[PrincessAnnie in reply to pennyannie]

Someone did say to me before that perhaps the Graves was winning at the time🤷‍♀️Typical story of my life,I’m not content with the one auto immune condition I have to have two🤦‍♀️

[pennyannie in reply to PrincessAnnie]

There is no definite treatment with Hashimoto's and this AI disease tends to die when the gland is fully being disabled and the patient on thyroid hormone replacement.

I would have thought that now some 4 years post RAI, this AI disease would be of little relevance whereas Graves is for life though not considered ' life threatening ' when thyroidless.

[PrincessAnnie in reply to pennyannie]

Thanks for your help I really do appreciate it❤️I’ve been reading up on ferritin and the thyroid today so I’m determined to get stuck into the chicken liver pate🙌

[pennyannie in reply to PrincessAnnie]

Well you could just buy some iron supplements in the meantime as you need double the level of ferritin you had last time I looked - an iron bisglycinate should be ' kinder ' on your stomach and bowel.

[PrincessAnnie in reply to pennyannie]

I did think of that actually but someone mentioned on here before about how dangerous it can be if all your other iron levels are ok,something like that if I recall,so that’s made me a little wary of supplementing😤I should have my medi checks blood results tomorrow so I’ll see what they say,I’ve noticed they do an iron test so I might get that done.