Antibodies puzzle : I am well puzzled. Just had a... - Thyroid UK

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Antibodies puzzle

DeeD123
DeeD123
81 Replies

I am well puzzled. Just had a phone call from hospital to say your antibodies are over the top. Cut your levo down.

Well that might sound ok until you consider that my blood results are not to bad. Not got exact results but t4 bottom of range , t3 just over range and tsh under range but not alarmingly so.

How will cutting levo ( I take 25 mcg every other day ) improve my antibodies 🤷‍♀️

Answers on a postage stamp please ......seriously though if anyone can give me an opinion that makes sense I would appreciate it.

Edited to say trab antibodies

81 Replies
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greygoose

I think they were just being economical with words. There is no connection, of course. I expect they mean you should cut back on your dose because they think your TSH is too low. Unless the person actually said: your antibodies are over the top therefore you should reduce your levo. Which obviously wouldn't have made any sense to anybody. :)

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DeeD123
DeeD123
in reply to greygoose

That’s what they said. Thank you, now I know I’m not cracking up

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greygoose
greygoose
in reply to DeeD123

lol Did you laugh? I think I would have. That is beyond ignorance!

But, who was it that phoned? Maybe it was a secretary who has no knowledge of thyroid and didn't really understand what she was saying.

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DeeD123
DeeD123
in reply to greygoose

No it was my endo surprisingly. Usually a smart cookie. In his favour I know I’m unusual and difficult to fathom out but I Was taken aback after it sunk in

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greygoose
greygoose
in reply to DeeD123

Well, an endo should know better. I think if it were me, I'd ring him back and question it, ask for full details of results, with ranges, and an explanation as to why he thinks I need to reduce my dose. I very much doubt your that difficult to fathom for someone who really know what they're talking about.

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DeeD123
DeeD123
in reply to greygoose

Hashimotoes 25yrs ,ted 12 yrs ,graves 18 months. I am difficult with no answers so far worse luck 😢

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greygoose
greygoose
in reply to DeeD123

Do you have Grave's antibodies?

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DeeD123
DeeD123
in reply to greygoose

Yes, it’s the graves that is playing up at the moment

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greygoose
greygoose
in reply to greygoose

OK, I thought you meant Hashi's antibodies. I don't know much about Grave's, but I take it you're on block and replace? That would make more sense, then, if he was talking about the Grave's antibodies. If they're high, it probably means your thyroid is going to be making more thyroid hormone, so you would need to reduce your levo. But, difficult to say with seeing any labs. :)

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DeeD123
DeeD123
in reply to greygoose

No block and replace just 25 mcg every other day also 25 yrs hashimotoes so thyroid was supposed to be shrivelled to a walnut size. It’s decided to come back to life and produce graves

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greygoose
greygoose
in reply to DeeD123

So, you do actually have positive TRAB or TSI? Sorry to insist, but I didn't think that was physically possible.

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DeeD123
DeeD123
in reply to greygoose

Neither did anyone else but yes I do worse luck. I know there are quite a few with graves who go on usually after tt to get hashimotoes but the other way around is apparently quite rare. No one seems to know what to do with me

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greygoose
greygoose
in reply to DeeD123

No, you can't get Hashi's after TT. With no thyroid there is no Hashi's.

I should think it is rare, so not surprising no-one knows what to do. I guess all they can do is keep monitoring and see how things pan out, and react accordingly - but intelligently!

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DeeD123
DeeD123
in reply to greygoose

I do like the intelligent bit , fingers crossed. Interesting about the no thyroid no hashies as I’ve come across quite a few on different Fb groups that say this is what happened to them.

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greygoose
greygoose
in reply to DeeD123

They might have had some high levels of TPO/Tg antibodies, but they can't have had the active disease, because what would it have done? The whole point about Hashi's is that it slowly destroys the thyroid gland. But, the TPO/Tg antibodies are not the disease. They can also be high with Grave's - especially the TgAB. And, I'm going to stick my neck out her - and probably get my head bitten off! - but I would surmise that maybe, if the thyroid was surgically removed, some thyroid peroxidase and/or thyroglobulin, which are normally contained within the thyroid, could have leaked into the blood, and the antibodies were then raised to get rid of it. But, that doesn't mean they actually had Hashi's. I'm always very, very wary of Facebook thyroid groups, you can read some pretty whacky stuff on them!

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DeeD123
DeeD123
in reply to greygoose

You stick it out as far as you like lol I’m more concerned with my own dilemma. I did have someone block me because she said she was the only one in the world that had hashimotoes and now graves. I was so excited to find some other person like me that I waded in and told her how pleased I was to meet her and that I had the same. Either she wasn’t happy about not being unique or she thought I was a nutter 🤷‍♀️. I would appreciate it if you ever come across it again if you could somehow let me know. It gets lonely on your own 😢

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greygoose
greygoose
in reply to DeeD123

Well, it gets you in funny ways, sometimes. Maybe she didn't really have Hashi's and then develop Grave's, and she didn't want her lies found out. I'm afraid I never give people the benefit of the doubt. lol But, I will try and remember you if I ever hear of another case.

Just out of curiosity, have you ever had an ultrasound of your thyroid? If so, what does it look like? You really are a very interesting case - not like me, just with boring old Hashi's/hypo. Very mundane. lol

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DeeD123
DeeD123
in reply to greygoose

Yes had an ultrasound earlier in the year. Mostly shrivelled but a small part at the bottom of the thyroid that looks completely normal . Was told without an ultrasound just neck examination around 12 yrs ago that it had shrivelled to size of walnut . For years I’ve been a bit smug at my ft3 results and how well I’ve always converted and been on levo alone . Now I know why.

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greygoose
greygoose
in reply to DeeD123

That is strange.

Not sure the Grave's was responsible for your good conversion, though, because it would have caused your FT4 to be high, too, if it were that.

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DeeD123
DeeD123
in reply to greygoose

I agree about the graves but it looks like my so called dead thyroid could have been helping out a bit. I’ve read something recently that has made me think that the cyclosporine could have brought on the disease. Only started having symptoms since being on it

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DeeD123
DeeD123
in reply to greygoose

I really must stop looking for answers. I give myself headaches

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greygoose
greygoose
in reply to DeeD123

Addictive, though, isn't it.

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DeeD123
DeeD123
in reply to greygoose

It is I’m sorry to say. It’s the retaining of any research I’m having trouble with. I never was much of an academic . Enough now time for bed where I can hopefully switch off. Thank you again 😁

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greygoose
greygoose
in reply to DeeD123

You're welcome. :) Good night.

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birkie
birkie
in reply to greygoose

Hi greygoose

I was very interested in your conversation withDeeD123 about graves/hashis.. You've given me some great advice on here.. I had TT May this year.. My anti bodies were very high don't have those results because they can't find my results from before my op but I'm bugging them to get them.. I had bloods taken on Wed this week anti bodies included... Can I ask you if you know if you are diagnosed with graves can you attack other parts of your body.. I had what I would term a flare up yesterday on my skin it becomes very itchy and red then blebs appear which weep.. I had this before my op to... I also have colitis, rhumertoid athuritis and ostio.. ME/fibro..

Many thanks greygoose. ❤️❤️

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greygoose
greygoose
in reply to birkie

Antibodies are very specific, so depends which ones you're talking about. Grave's antibodies, as far as I know, only attack the thyroid and the eyes. I don't think they attack the skin or anything else. Other autoimmune diseases would have their own type of antibody.

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birkie
birkie
in reply to greygoose

Thanks greygoose

I'm having a test at the hospital to test for allergys.. So maby that will show something

Thanks again.. ❤️❤️

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greygoose
greygoose
in reply to birkie

Antibodies and allergies are two different things. So, probably not.

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birkie
birkie
in reply to greygoose

Hi

I was at the hospital Monday at ENT.. Not with my thiyroid with my earing and head aving a CT scan on the 20th Nov.. But the consultant thought I might be having a reaction to levo as its doing much the same as the anti thiyroid drugs did which I couldn't stomach I have very loose bowls a splitting headache nausea pain in my bowls like inflammation and I feel awful on it.. I came off it for 2 days for my thiyroid bloods.. I felt great no headache no nausea no running to the loo gone back on it woke up today to a splitting head feel sick ect 😢😢😢

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greygoose
greygoose
in reply to birkie

Oh dear. That's not good. You certainly could be reacting to the fillers in the levo tablets. Have you tried different brands?

It can't be the T4 itself. Because stopping levo for two days would not clear the hormone in your system, that would take several weeks. So, it would have to be the fillers affecting you.

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birkie
birkie
in reply to greygoose

Hi thanks

It's weird because when I was put on the anti thiyroid drugs,,,they tried me on carbimazole and PTU I managed on them until they started to make me ill. First noticed headache not like me don't really get headaches then I started with nausea bowls went nuts server inflamation of intestines with pain then eventually vometing...I do think their might be something in them greygoose because their are certain drugs I cannot take also my bloods are crap I have posted them on here..I also think I might not be converting very well..my last bloods were on wed 4th Nov see doc on the 12th Nov for results so will post on on the 12th

Thanks again greygoose ❤️❤️

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greygoose
greygoose
in reply to birkie

Well, you can't really compare the active ingredients in anti-thyroid drugs with the active ingredient in levo. Two entirely different things. However, they might have some fillers in common. Could you possibly check the ingredients to see if there are any fillers that they both have?

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birkie
birkie
in reply to greygoose

Hi again

I think I can check! Only thing I see in my Levo is lactose,,,as I say in at my docs on tue so will be asking plenty of questions especially if my bloods are the same..

Thanks again❤️❤️❤️

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greygoose
greygoose
in reply to birkie

You're welcome. :)

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birkie
birkie
in reply to greygoose

Hi greygoose

I looked in to the ingredients of both anti thiyroid drugs and levo they all contain lactose so I could be lactose intolerant as the symptoms are very like mine... Will be seeking answers at my GPS appointment 👍

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greygoose
greygoose
in reply to birkie

Could be. Are you dairy-free?

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birkie
birkie
in reply to greygoose

Hi greygoose

As I said certain foods start me off but I don't have a lot of milk or cheese but I do notice if I'm out with friends and have something different I get bad pains bloating inflamation nausea so I always think ha I've eaten something some time it's puddings with cream dreading Christmas coz I love mince pie and cream..👌🏻😋😋

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greygoose
greygoose
in reply to birkie

Could be the lactose, then.

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DeeD123
DeeD123
in reply to birkie

Teva 25 mcg are lactose free

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birkie
birkie
in reply to DeeD123

Hi DeeD123

I think I will switch to them to see how I get on thanks for the info

❤️❤️❤️

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DeeD123
DeeD123
in reply to birkie

Your welcome. Most don’t get on with them but I’ve always been fine. X

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birkie
birkie
in reply to greygoose

Hi

Sorry forgot to say been on different types of Levo but been on mercury pharma for 3 months now ❤️❤️

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Angel_of_the_North

You can also have hypo Graves, which I only recently found out.

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DeeD123

Please explain as I’ve never heard of it

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Angel_of_the_North
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DeeD123

Thank you will read it as soon as my eyes uncross.🤞

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DeeD123

Sadly no. I never presented with graves at all until 18 months ago. Was hashimotoes and on levo for 25 yrs previous. Thank you for the link though

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DeeD123

Have realised there were three, sorry my eyes are quite bad in the mornings. Number 3 sounds more like it except for timelines. Had ted 12 yrs and no sign of trab antibodies untill I was put on immune suppressants 18 months ago. Big gap BUT yes it does sound very similar . Have printed it so I can read again when eyes clear properly. Huge thank you for taking the time to look for me. X

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DeeD123
DeeD123
in reply to greygoose

Have appointment in a month with more bloods but I’m betting my t4 will be well under

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Marz
Marz
in reply to DeeD123

Try and get all your results with ranges as far back as possible. You can then monitor your results and check what has been missed 🤔

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DeeD123
DeeD123
in reply to Marz

Marz nothing has been missed. My graves is a recent addition to the rest of the autoimmune disorders hashimotoes being the longest

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Treepie

Might be a pituitary problem

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DeeD123
DeeD123
in reply to Treepie

Think I just need knocking on the head tbh Treepie

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Treepie
Treepie
in reply to DeeD123

I have felt that way a few times!

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DeeD123
DeeD123
in reply to Treepie

😘

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greygoose
greygoose
in reply to Treepie

Antibodies are nothing to do with the pituitary.

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Treepie
Treepie
in reply to greygoose

I was responding to the low T4 high T3 , not the question .OOPs

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greygoose
greygoose
in reply to Treepie

Well, that would have nothing to do with the pituitary, either. That sounds more like a conversion problem.

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Treepie
Treepie
in reply to greygoose

Not that way round? I googled for possible explanations.

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greygoose
greygoose
in reply to Treepie

Oh, sorry, yes, see what you mean. But, not really anything to do with the pituitary, no. Which post are you referring to, anyway?

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Treepie
Treepie
in reply to greygoose

DeedD123 first post above.

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greygoose
greygoose
in reply to Treepie

Ah, OK, sorry. Got a bit confused there for a moment.

So, the pituitary, yes. It produces TSH to stimulate the thyroid to make more hormone. But, one thing I've never heard mentioned is: does it tell the thyroid which hormone to make more of? I know that we will sometimes see low FT4 with higher FT3 - and high/highish TSH - because the thyroid is making more T3 than T4 in an effort to keep the patient alive. But, does the pituitary tell the thyroid to do that? diogenes?

However, in DeedD123's case, the TSH is low. So, it can't be that. And, it can't even be the TSH driving extra conversion because the TSH is low.

So, to put it in a nutshell… I have no idea. :)

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diogenes
diogenes
in reply to greygoose

In healthy people, pituitary TSH stimulates the thyroid to make both T4 and T3 directly. The T3 so made is about on average 25% of the body's T3 in total, which is made also by T4-T3 conversion by the body (75%). The T3 made by the thyroid is under TSH control in a "feedforward" mechanism - that is, as TSH rises, it stimulates more T3 production by the gland. The rise in TSH is of course stimulated by the "feedback" mechanism in the body (higher FT4 and FT3 reduce TSH production). As thyroid activity declines owing to progressive failure, there is less T4 + T3 hormone load on the body, ( less T4 to convert to T3). To alleviate this, the thyroid remnant is stimulated by rising TSH to continue making T3 to make up for the body's lowered supply of T4 to convert. As the thyroid progressively dies, TSH rises more and more, and the remnant increasingly responds to keep its T3 output steady as possible at the expense of T4 output. Things are so balanced that the failure of the body to convert enough T4 to T3 (T4 production declining in the dying thyroid) that this failure is virtually nullified by the thyroid's desperate attempt to keep FT3 overall as normal as possible, through the TSH-T3 stimulation feedforward mechanism. When the thyroid is dead, that route is impossible and now the body is entirely dependent on dosing by mouth (T4). But now any T3 made is done entirely by body conversion, so more T4 has to be given to make up for the thyroid loss of activity. Some people cannot achieve the right FT3 this way and need combination therapy.

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greygoose
greygoose
in reply to diogenes

OK, so how does that apply to the present case presented above, of someone with both Hashi's and Grave's, low TSH, low FT4 and high FT3?

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diogenes
diogenes
in reply to greygoose

See my later post

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greygoose
greygoose
in reply to diogenes

Thank you for your responses. :)

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DeeD123
DeeD123
in reply to diogenes

Could that post help me. If yes I would be grateful if you could point me in the right direction. Many thanks.

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Nanaedake

I'm pretty sure we've had people on this forum before with antibodies for both Hashimotos and Graves disease, opposite ends of the ame spectrum of autoimmune thyroid disease.

If TRAB antibodies are currently raised then have you had FT3 levels tested alongside FT4 and TSH? That will give the clearest indication of thyroid hormone status. It's how much active thyroid hormone you have in your body that should influence decision making.

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DeeD123
DeeD123
in reply to Nanaedake

T3 only just over range t4 bottom of range tsh under but it’s always been under even on levo. As I said I’ve developed the graves recently but hashimotoes is a 25 yr companion

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DeeD123
DeeD123
in reply to Nanaedake

But will it affect antibodies. As I thought and GG confirmed reducing dose won’t bring antibodies down

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Nanaedake
Nanaedake
in reply to DeeD123

No it won't make a difference to antibodies but its not the antibodies that are the problem so much as having too much thyroid medication which may possibly affect bone density although there is no research that definitively proves overmedication causes bone density reduction in humans as far as I know.

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DeeD123
DeeD123
in reply to Nanaedake

I have had dexa scan and I have excellent bone density

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Nanaedake
Nanaedake
in reply to DeeD123

That's great!

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Nanaedake

I think if FT3 is over range it's wise to reduce levothyroxine.

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DeeD123
DeeD123
in reply to Nanaedake

I am by 25 mcg a week . The reason it’s so little is because my t4 will drop well below range if I don’t put some in my body. It’s been tried befor

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Nanaedake
Nanaedake
in reply to DeeD123

Well, if you have enough active thyroid hormone in the form of T3 then FT4 is likely to drop. I've seen some people on here with almost undetectable FT4 when taking T3 medication so I'm not sure that low FT4 is actually a problem if you have enough T3.

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DeeD123
DeeD123
in reply to Nanaedake

Thank you. Being hypo for years on levo I’m ft4 fixated I think,hard to get out of. They tried stopping levo completely but t4 went well under bottom range although t3 was in range. I don’t think I will get any further with it for now tbh I wish it would just die a damnd death one way or the other but at least I know now that I’m not going bonkers my endo is . Thank you for your replies. X

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asiatic

The following paper may be of interest in your quest to finding answers to what is going on.

dx.doi.org/10.1155/2012/182176

It suggests hypo and hyper are two sides of the same disease.

I must admit although I found it interesting it was difficult for me to fully understand.

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DeeD123
DeeD123
in reply to asiatic

Thank you I will read it tomorrow. I might be able to find something helpful in it. Much appreciated. X

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diogenes

The only way I can understand this (FT4 low, FT3 high and TSH low) is to suggest that the antibodies to your thyroid are actually stimulating production of thyroidal T3 at the expense of the usually dominant T4 production. I can't believe it's increased body conversion because I don't know how the enzymes would be stimulated there. Antibodies can be very specific in what they target, and it could be they are targetting the thyroid T3 production to stimulate it at the expense of T4 production.The shifted balance might then reduce TSH somewhat. See my earlier comment on this post.

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DeeD123
DeeD123
in reply to diogenes

Think this was the post you meant so thank you. . I definitely have trab antibodies and was previously diagnosed with tgab not just tpo. I’m leaning more to the conclusion that this Graves was caused by being put on immune suppressants for my eyes . So not a spontaneous eruption more like unintentionally induced As I have never previously had any hyper symptoms.

I’m probably way off course though . I just wish they knew how to treat me. First they wanted to remove it. Surgeon says no it’s working so unless everything is tried and failed leave it. 🙏 so now it’s a matter of gradually reducing the levo. 100 per week at the moment.

Once again my thanks

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