Why do GP's not care if you have antibodies showing, and don't seem to think it is any kind of problem?
I went back to the GP today to follow up on latest blood test that were done (TSH up to 6.2 with a range of 0.27 - 4.2). She wanted to know if I'd had a T3 test (I did, but not on the NHS, was done by medichecks) so showed her my medichecks results and was talking about the thyroglobulin antibodies results (mine were at 230, the range is <115).
She denied that this was a problem, lots of people had raised antibodies and the majority of time nothing ever happened with them, only a few went on to develop thyroid problems. Yet on here, when I put my results up, I was told that these antibodies meant I had autoimmune thyroiditis (sorry about spelling!). Is that wrong? I'm really confused now.
On the up side, she was happy for me to have blood tests for coeliac test, and also vitamin D which wasn't done before, plus ferritin again, as I had written down that my last result was a little low at 58, and I'd read that it needed to be at least 70 for thyroid hormone to work. She has also put me on a minimal dose of 25mg of levothyroxine, which I'm not sure will do anything, but will obviously try. I have got lots and lots of symptoms, so it isn't the case that I have all these raised levels but it isn't affecting me in any way.
Is there anyone that can help me out with what exactly those thyroglobulin antibodies results mean? And what to say? I made notes this time, and she did listen and go through everything with me, but when it comes to the antibodies side, it's like they just don't want to know. I would really like to arm myself with some good comebacks for next time, plus am seeing an endocrinologist in September so would like to be prepared.
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Fluffysheep
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She's right and she's wrong. Tg antibodies can be raised for many reasons. It's when they are very high that it means Hashi's. How are your TPO antibodies? Those are the ones doctors associate with Hashi's - if they actually know anything about Hashi's, which they normally don't. And that's the point: they don't know anything about Hashi's.
But, even if she were concerned about them, there's nothing she can do about them. You do have Hashi's, which has caused you to become hypo, and she's giving you levo for that - even if the dose is too low - there's not much else she can do. So, for her, they are of no importance.
There's not much you can do, either. You could try a gluten-free diet, see if it makes you feel any better. But, those Tg antibodies are not, themselves, doing any harm. They are just an indication that you have Hashi's. So, I wouldn't worry about them, if I were you.
Ok, thank you. My TPO antibodies were in range (17.1 with a range of <34).
I think my main problem with it is that my understanding (rightly or wrongly) is that it is the thyroglobulin antibodies that have caused me to become hypo, as you said in your reply. But she was basically dismissive of that, essentially saying that the two things weren't connected.
I do understand that there is nothing I can do about the antibodies per se, it is just the lack of understanding, and of course, me not being medical and being pretty new to all this just had to sit there like a dumbo as I had no real comeback. I myself like to understand things, and know how/why things have occurred, so I thought I had it all sorted in my head regarding the antibodies and subsequent hypo, but now I just don't know!
I have been wondering about going gluten-free, as seen a lot written about it. I thought I would ask for the test first, because I know you have to have been eating gluten for 6 weeks, so may as well have the test then do it (if I decide to go down that route).
I read the leaflet supplied with the levothyroxine and see that it says that the starting does for adults is 50mg, so is the 25mg she has put me on going to be completely pointless?
Well, she's wrong to say they aren't connected. But, you have to understand how limited their knowledge of thyroid actually is.
However, it's wrong to say that the Tg antibodies caused you to be hypo. They didn't. It's the autoimmune disease that has caused you to be hypo - the antibodies are not the disease, they are the result of it. The antibodies themselves haven't done anything wrong.
The test for Coeliac disease is not 100% reliable. And, you can still be sensitive to gluten even if you don't have Coeliac. A lot of Hashi's people are, and feel better when they give up gluten.
I wouldn't say that the 25 mcg are completely useless - although such a low dose might make you feel bad before you feel better - as long as she is prepared to increase it to 50 mcg after six weeks. And, then keep on increasing by 25 mcg until you feel well. You've got to start somewhere, and with hormones you always have to start low and increase slowly. You cannot just go straight to what you imagine your ultimate dose will be - for one thing, you cannot know what your ultimate dose will be, and for another you would make yourself very ill by taking too much too soon. So, stick with it.
Sorry greygoose, this is where I think I got myself confused (and still am if I'm honest!). I know I probably didn't word it very well either. I assumed I had an autoimmune disease because I had antibodies (from what I'd read on here and replies to my previous 2 posts). I realise that the antibodies are a result of autoimmune disease, and it is the disease that makes you hypo, not the antibodies themselves.
However, the Dr basically said I didn't have autoimmune disease, and that there wasn't any link, and that lots of people have raised antibodies.
Can I ask why such a low dose might make me feel bad before feeling better? I had no idea what dose I may or may not be started on, but after reading the leaflet where it says the starting dose for adults is 50mg, I did wonder why she has started on 25mg. I do think she'll be prepared to up it though, whilst she wasn't interested in the antibody side of things and linking things up, she did at least agree that my TSH was raised at 6.2 to start something, and wants my bloods testing again in 6 weeks to see what kind of effect (if any) the meds have had. And yes, I will definitely not take the tablet that day until after the blood test, and will go early!
I know the coeliac test isn't 100%, and I don't have any specific issues, but I just thought that I might as well take the test anyway, then consider going gluten free after. I will have to look into it quite a lot, I'm vegetarian and also follow a low carb diet (used to work amazingly for me, not so much the last couple of years, I'm really struggling to lose weight) and see how I can make it work for me. I'm sure I can with a few tweaks!
I know I'm perhaps concentrating on the wrong thing in regard to whether I have an autoimmune thyroid problem or not, and this is going to sound silly, but at the moment I just want to know because I want to know what to declare on my travel insurance! Do I just tell them I am hypothyroid, do I tell them it is autoimmune, do I say it's hashimoto's? I already have some quite unique things I have to declare on there, and knowing how insurers can wiggle out of things, would rather over declare than under, but really not sure what to say!
Fluffy, you expressed yourself perfectly. And I understand that you're confused. But, so is your doctor. She really knows nothing about it. And, consequently, she's talking rubbish. You do have Hashi's, but she doesn't know that.
A low dose can make you feel worse because it's enough to stop your thyroid's natural production, but not enough to replace it.
Imagine your thyroid produces 50 mcg T4 per day. Your doctor prescribes you 25 mcg, fondly imagining that that will add up to 75 mcg. But, if that 25 mcg is enough to stop the thyroid production, you will end up with a reduction in total hormone to 25 mcg, rather than 75 mcg per day. It doesn't always happen but very often it does. And doctors have no idea about that.
If I were you, I'd forget about my weight right now. This is no time to go on a diet. Low calorie intake can reduce your conversion of T4 to T3 and make you more hypo. It's rather doubtful that your weight gain has anything to do with what you eat.
I'm afraid I can't help you with the travel insurance. Although I've travelled rather a lot, I've never taken out insurance, so don't know how it works.
Just a comment regards travel insurance. I declared Graves' disease on my annual insurance. It was noted but didn't increase my premium.
I believe insurance companies are advised by doctors and we know how limited their knowledge can be on Thyroid AD. However in this case it worked in my favour. No extra questions flagged up and I didn't mention my TED. I would imagine it would be the same for you and probably irrelevant to them if you said hypothyroidism or Hashimotos
Thank you. I'm hoping it won't increase the premium (annual policy take out last November), but definitely need to make them aware.
I also have the conundrum of deciding how to declare something else. Saw a consultant a couple of weeks ago about heavy bleeding during period (this is where my TSH levels were picked up as I had a full range of blood tests ordered). Booked in for endometrial ablation in October. Heavy bleeding can be a symptom of Hashi's, could also be something gynae related. Got an ultrasound scan on 18th July, go away on holiday on 21st. so need to update insurance with something!
Neither of these things should impact on holidays I already have booked, but they have to be declared because if something goes wrong medical wise, even if completely unrelated to those things, insurers will use it to not pay out. It's such a minefield!
Yes you definately need to inform them but I think they will still insure you but probably at a price. My husband's heart attack upped our premium by £50. Worth paying for peace of mind.
Hashimoto thyroiditis is an autoimmune disease in which the thyroid gland is attacked by autoantibodies. Thyroglobulin antibody is 1 of 2 types of antithyroid antibodies described in Hashimoto thyroiditis. Antimicrosomal (now termed antithyroid peroxidase [anti-TPO] antibodies) antibody is the other antibody, and it is highly specific for autoimmune thyroiditis. Antithyroglobulin can lead to the destruction of the thyroid gland. However, they are not as specific for autoimmune thyroid disease. Their presence in the absence of antimicrosomal antibody is not sufficient to establish the diagnosis.
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