Warning a bit of a rant

Beginning of June I had my thyroid function test my TSH was 7 and even though feeling lousy because it's not considered very high no changes were made to my medication, the end of June I was tested again when I first phoned I was told my results were normal, then told inconclusive and then finally told the labs refused to test because too soon. Had yet another blood test last Thursday (14th July)the dr who requested said it was a full thyroid test as did the nurse taking the blood. I phoned for results Thursday to be told results normal but no figures it just says normal no further action but the receptionist gets a dr to call me back. Get phone call back yesterday and apparently the only thing they tested was antibodies so now I have to have yet another blood test Monday :/ what's the betting the labs will refuse to test again *sigh*

Also I've read that antibodies can show normal but still be a problem but because so much damage has been done the antibodies are not there or something along those lines can't remember exact words. In 2011 when I was diagnosed my antibodies were over 1300 and I hadn't been tested again for them since until last week.

If you got this far thank you for reading x

16 Replies

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  • Madmumofmany,

    It's not often that NHS repeats antibody testing having had a previous positive antibody test. Antibodies of 1300 in 2011 means you have autoimmune thyroid disease (Hashimoto's) which causes 90% of hypothyroidism. 100% gluten-free diet may improve symptoms and reduce antibodies.

    chriskresser.com/the-gluten...

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

    Your GP should increase dose until TSH is 1.0 or lower with FT4 in the upper range. Most people will find symptoms resolve after this but symptoms can lag a couple of months behind good biochemistry.

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

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I didn't know that I asked about thyroid antibodies because I didn't know it had ever been tested at the time and she said she would test because it being so long since it was last done

  • madmumofmany Well, once your antibodies have come back positive, there's not much point in testing any more anyway so goodness knows why they've been done again. They will fluctuate. You have positive antibodies therefore you have autoimmune thyroiditis aka Hashimoto's. As you have Hashi's then your symptoms and thyroid results will fluctuate as and when the antibodies are attacking. This has already been explained in your previous threads.

    Have you gone gluten free to try and help reduce the attacks? Are you now supplementing with selenium, again to help reduce attacks? You really need to be doing as much as you can to help yourself regarding Hashi's. Links given in previous threads of yours.

    For a medicated hypo patient then a TSH of 7 is ridiculously high and I think it shows your GP doesn't know much about thyroid disease. The aim is for TSH to be 1 or below, or wherever it is needed for FT4 and FT3 to be in the top part of their ranges. Reducing TSH will help reduce antibodies and therefore Hashi's flares so your GP should be aiming to get your TSH right down.

    You need to learn as much as you can so that you can discuss this assertively with your GP (not easy I know). Tell him that you've checked out NHS Choices recommended source for information - Thyroid UK - and these are their recommendations. We have to do so much to help ourselves because unfortunately many doctors don't know enough to help us.

  • No haven't I've been putting it off because of how much more it costs for gluten free but know I should try I guess I was hoping maybe it was just a blip but I am very naive.

    I'm just getting pissed that I keep going for these tests but not actually getting results I'm just hoping they do actually test this time

  • madmumofmany Your antibodies wont go away, they will always be attacking your thyroid at some point, until your thyroid is destroyed, so the best thing you can do is try to reduce the attacks. Gluten free has proved very successful for many Hashi's patients. Some also need to be dairy free.

    I don't have antibodies nor a problem with gluten so I've not taken up a gluten free diet. But from what I understand you don't have to buy expensive gluten free products. You just need to prepare food that doesn't contain gluten. Basically, eat clean and prepare all your own food. Any packaged food needs a thorough read through of labels, gluten is hidden in so many things. There are probably quite a few members who have adopted a gluten free diet, start a new thread asking what they do and don't eat.

  • Thanks I'll try that I have very fussy kiddies so trying to be able to affordably but gluten free may be a challenge though I do have a friend who is gluten/dairy free so I'll ask her too

  • madmumofmany You will probably be able to find a way of giving the children what they want, if they're having something that contains gluten then you could possibly have a salad, jacket potato or something like that.

  • Good idea I might actually lose some weight. When I mentioned gluten free to my daughter she said I better not give them it as if it's some poison lol

  • Boarding schools used to cure kiddies of fussy eating by not providing any alternatives - hunger is a great teacher. Plus you can cook a different meal for other family members. I'm gluten-free vegan. but I can cook meat pie for visitors.

  • Tried that and my son would rather go hungry unfortunately though thankfully a lot of the stuff I buy is naturally gluten free it's just things like bread, pasta, cereal etc but have managed to get some stuff without having to change what we eat too much

  • You don't need to buy gluten-free products, just stop eating processed grains completely. Also read the labels on sauce bottles and soups as many contain unnecessary gluten, but aren't different in price from those that don't.

  • A tsh of 7 is in no way whatever normal

    Healthy people have a rsh of around 1.0

    Your free t4 and free t3 should be in upper quadrant of their ranges

    Ferritin

    Folate

    B12

    Vit d3

    Should also be tested and must be halfway in their ranges otherwise any thyroid hormone treatnent cannot be utilised by your body

  • I've asked for all those tested and thought they were going to but only tested antibodies. The nurse hurt my arm last time and it bled more than normal so I was kind of hoping to avoid more blood tests but hopefully this time they'll do it right

  • It may be too late for this now but in future if the lab refuses to test, your gp can ring them and discuss. They keep the blood for a week(ish) and (in my surgery anyway) you may get your results much sooner. When you see what's missing, request that your gp ask for the missing things to be done with the reserved blood.

    I hope that makes sense - ?

    They refused tests for me once and I was very cross because it meant having to go back and redo it all, and it is already a palaver to go through the whole scheduling and blood draw thing, I don't need that experience twice in a short time for the same thing. So I wanted to say it here because it could help someone down the road.

  • Have a quiet polite word with the practice manager before the test. Point out the unnecessary tests and that you need the proper results for your health. She or he can then have a word with the labs (as the practice pays for the tests and has wasted money) to make sure your blood is tested to the GPs orders. Also add very politely that you are considering paying for private tests to get the results you need, and you will be in touch with your MP on this matter.

    I get fed up with the labs deciding what to test. I had three tests for Vit D and they refused to test. When they finally did test it was in my boots. The person in the lab who decided not to test was therefore responsible for my ill health and that is not acceptable. Sorry, bit of a rant there!

  • I've been gluten free for six years now. I have a packet of gf bread in the freezer, but it lasts at least 3 months, since I only really use it for cheese on toast. I have a frozen (Goodfellas, Tesco) GF pizza in there too, for emergency meals but its in danger of going out of date.

    Although the switch is hard, it really is not that difficult to eat GF and never touch the ready made stuff. I do buy rice cakes, but mostly I simply cook with rice or spuds. To be honest the GF stuff is pretty dire in the main, so no great loss.

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