"paradoxical symptoms"

[fidelis]

I was diagnosed 15 years ago as a result of a blood test for something else, as having an underactive thyroid. I take 150mg of Thyroxin per day. I never put on weight, am hyper active and have chronic insomnia, and have been told I have "paradoxical symptoms. I have never been told anything about TSH etc. levels . When I express my doubts about it all then I am told I will have to sign a disclaimer in case In case of something happening . Why do I feel I'm on a different medical diagnosis country from everyone else I read about!

[Marz]

I would suggest you ask for copies of all your recent thyroid blood tests and post the results with ranges here in a new post. Then people can be more helpful. I think the Doc means you have symptoms of both Hyper and Hypo - in that case you may have Hashimotos. Have you had your thyroid anti-bodies checked ?

[fidelis in reply to Marz]

all I get is a once a year blood test but I never see it! Doc says I have no symptoms of underactive. I cant really believe there is anything wrong with me at all, (except the effects of Thyroxin!) But when my next test is due I will ask him for a printout of the result, but he will have a fit, and may not give me one! But thanks for your advice!

[Marz in reply to fidelis]

thyroiduk.org.uk/tuk/NHS_In...

As you can see from the above link it is your right to have copies of your tests. You do not have to see the GP but can phone and ask to collect them from Reception.

No need for him to have a fit - it is a normal procedure and enables you to monitor your OWN health. I live in Crete and we have to keep all our own records - scans and all !!

To be well we have to take control of our own health. When you have them post results with ranges. Wise people will help you decide if you need more or less treatment. You will also be advised to have the Iron- Ferritin - Folate - B12 - VitD tested as they are the building blocks of your health.

I see you joined this forum some two years ago - so you probably know all this - apologies if that is the case

[fidelis in reply to Marz]

Thank you, yes I did, but stopped posting as I thought everyone elses symptoms were so different! The trouble is I live in a very remote area with only one doctor in a huge geographical area. he lives nearbye and I don't want to be too forward! But you are right, I will ask for copies whenever they call me in again!

[shaws Administrator in reply to fidelis]

Just say you want to keep records of your blood test results for your own records. You don't need to go into the reason.

The fact that he tells you your underactive thyroid is not connected to your symptoms I would take with a pinch of salt.

Get your antibodies checked as Marz has suggested. It is important to distinguish what type of disease of the thyroid gland you have. When you say you feel hyperactive, is it because you get palpitations. If so, I always had palpatations when on levothyroxine and it was an awful experience.

Also ask for the tests Marz has suggested as we are usually deficient and can cause clinical symptoms too. Particularly Vit D and B12.

We have to take things into our own hands and know what is going on in our bodies. It's not so easy as some doctors think that it is only the TSH which should be used as a diagnosis as many of us feel much better when it is around 1 or below.

[fidelis in reply to shaws]

I wish I was well informed about all this! All I have done for all these years is swallow the stuff and on the rare occasions I see him complain to the Doc that I don't see the point ! I take these vitamins anyway, have done for years. My main reason for referring to myself as "hyper active " really is because I only sleep about 1 or 2 hours a night, never doze or nod off and despite being active, walking, keepfit etc never seem to be tired and Im thinking Thyroxine is making it worse. As I said when I don't take it I feel fine but then these results come in and the Doc makes a fuss and says hes never seen results like it , tells me to sign a disclaimer and I get frighjtened and cave in and start taking the stuff again! Thanks everyone for their help. I feel stupid that Ive never gone into it all more thoroughly!

[greygoose in reply to fidelis]

Do you know there are over 300 symptoms of hypothyroidism? And you don't have to have them all to qualify! Thyroid hormone is needed by every single cell in the body for every single function. So, if there's not enough to go round, anything can go wrong! And I mean, anything. The distribution of available hormone will be different in every individual, so it's not surprising if people have different symptoms. If your doctor tells you that such and such a symptom is 'nothing to do with your thyroid', he's talking rubbish. You can never say with any certitude that a symptom is not due to thyroid, because anything can be - and usually is - due to your thyroid.

Your doctor obviously knows nothing about thyroid - not many doctors do - so ignore him. Get your results - as I advised you the other day - and let's have a look at them - it would be really good if you could get hold of the first results when you were first diagnosed.

Don't allow your doctor to intimidate you or frighten you. Just imagine him sitting there in his vest and underpants - oh, and socks with those ghastly sock suspenders you see in American films. That will show you that he is only human, and not the demi-god he imagines himself to be. He is not your lord and master, he doesn't get to dictate to you, he is just there to advise you, and it is for you to do your research and give an informed consent or refusal. OK?

I'm sure we'll get to the bottom of this somehow!

[fidelis in reply to greygoose]

how kind you are its very good of people to take the trouble! I do feel stupid that I haven't looked more into it , but I was preoccupied for years when my husband developed dreadful dementia and died last December after a terrible time, so I felt agitated and depressed about that and I expect it masked my symptoms. I will definitely try to be more assertive about this. No idea of course when Ill be called in for next blood test but I suppose I can ask ! I have cut down on thyroxine so much that Id better take a few tablets otherwise they can always tell Ive stopped. ! Is there a book or pamphlet I can read I wonder?

[greygoose in reply to fidelis]

Don't feel stupid, it's none of your fault. These things happen. And we Don't realise that we can't trust out doctors until something like this happens.

Doctors haven't been educated in thyroid, they Don't know even as much about it as their predecessors did. What's more, they aren't terribly interested in it, generally. They have this odd idea that all you have to do is take a little daily pill and everything goes away.

Except that it doesn't, and as they've been educated to believe that all patients are hypocondriacs and liars - not to mention stupid - especially women! - they just Don't understand how ill we become.

Not that I'm standing up for them! No, no, no! Perish the thought! lol The main problem with thyroid is medical sexism, which is just plain wrong! But that's the way things are.

So, once we realise that, and that our doctors aren't going to make us beter - and are probably going to make us worse - we see that we have to become our own advocats - if not our own doctors. So, we start Learning, slowly, slowly, slowly, until we get there.

Take my case, for example. I was diagnosed in late 2000. I was put on levo and instantly got ten times worse. Doctors would do nothing, it was the old story of 'your TSH is in range, so there's nothing wrong with you'!

I remember sitting in my office one evening, crying, wondering what the hell I was going to do. Was this it? Was the rest of my life going to be complete misery? I was actually sitting looking at my computer, and yet it never occured to me to switch it on! But when I stopped crying, I thought, what I need is a book. But how am I going to find one on this subject? I doubt if our little local Library or bookshop has one...

Then I thought about Amazon! For Christmas I had bought my brother in England a book about Néfertiti on Amazon, and I had been amazed at how easy it had been! Just find the book - and that wasn't difficult - type in his address and pay! And I even got it gifted wrapped! Wow! I love this internet thingy! lol So, if they had a book on Néfertiti, the probably have one about- thyroid...

And they had lots! Didn't know which one to chose as I knew next to nothing about the subject. So, I closed my eyes and stabbed my finger at the screen (they were hard screens in those days lol) And, as luck would have it, my finger had pointed out Mary Shomon's book, Living Well With Hypothyroidism. I think my guardien angel was guiding my finger that day...

So, got the book and started to read, and at the end, she talked about her forum. Straight onto the computer and googled Mary Shomon, found the forum and signed up. And that, as they say, was the beginning of the end! lol

You Don't have to wait to see your doctor to ask for your print-out. Call the secretary/receptionist and ask her. Say you'll drop round and pick them up tomorrow! Don't take no for an answer! x

[fidelis in reply to greygoose]

just found a letter I got from the consultant 2 years ago which says, "tests show your thyroid is under active with a low circulating level of thyroid hormone at 7.8pmol/l and a very high TSH at 43 mlU/1. The antibody test which I performed was positive which would confirm that the underlying cause of your under active thyroid is an attack on the thyroid gland by your immune system . I would certainly recommend that you now recommence Thyroxine aiming to achieve a serum TSH on treatment around 1ml/l (this was after I had stopped for a while) So there it is if anyone can make any sense of it!

[shaws Administrator in reply to fidelis]

I am so sorry your husband died and also had dementia which would have been extremely difficult for both of you.

You now have to look after yourself. Just phone the surgery and make an appointment to see your GP tell him what tests are recommended so that you can now look to trying to get some good health back. It's not good that you cannot sleep etc. I am sure he would be more than willing.

Some get worried if patient looks on the internet but you can tell him this site is recommended by NHS Choices.

[shaws Administrator in reply to fidelis]

As soon as some T3 was added to T4 (levo) I immediately felt so much better. Levothyroxine didn't do me any favours. Why your doctor gets you to sign a disclaimer is that if we need a replacement thyroid hormone and don't take it we can develop other more serious diseases, i.e. heart etc. That's why if hypothyroid we get all our other medications free if under 60.

All of us were ignorant before we became hypothyroid and, like you, If we went to doctors with any ailment we were confident in him and took the medication for one particular problem and got better. The problem with thyroid hormones is that it isn't a drug but hormones which we need to run our whole system in the billions of cells in our bodies: it must be sufficient for our needs: everyone differs. We go to the doctor with continuing clinical symptoms (they don't know them) and are given additional medication for the symptom but not sufficient thyroid hormones as we are kept in the 'normal' range. Not good.

If you want to recover your health we have to read and learn in order to get better. I am very well now but have had to try several alternatives throughout the 8 years and am now contented. I now sleep well and I know what insomnia is like as I was the same on levo but not everyone has the same experience.

Even though you are taking vitamins, still get the GP to do a Full Thyroid Function Test plus the vitamins or post your recent results so that you can get feedback from members and you then go from there.

Taking Vitamin C with levothyroxine helps to convert it to T3 which is the hormone we require in our cells for us to function.