Antibodies, but Doc says no treatment

Hi there, I have now had another NHS consult with a new doctor, who is very nice and concerned that i've been so unwell but looking at my test results with TPO antibodies at 67 ( >34) she says she's *not* concerned about that and has therefore said she isn't going to treat.

My increasingly heavy periods are being looked at as a cause for concern and iron stores depletion and I've had a referral to the Gynae dept at local hospital. I've been given Transexmic acid and another drug to stop the bleeding (3 weeks and counting!)

Should I just forget the NHS in terms of treating or taking seriously the TPO or is it too low a level anyway to be of concern? Have changed diet (gluten, dairy free)

Or should I press on with private doc and treatment?

Confused!

15 Replies

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  • This is an excerpt from an article by Dr Toft of the British Thyroid Association. If you have clinical symptoms, GP should prescribe. GP is probably going along with the view that until TSH is 10, no meds are needed:

    But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

    In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

    Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

    If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH

    ***

    You have symptoms, heavy periods, etc.

    If you want a copy of the whole article, email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's Pulse Online article.

  • Thank you so much, yes I have a copy of that article.. So, will have to go back and ask to have a trial of Levo? she didn't even seem bothered about them one little bit, but I have been symptomatic and quite unwell.. the periods can be sorted out, and hopefully I'll feel a bit better but I'd like to nip it in the bud yes...

    thanks for your considered reply

    Abby

  • NHS is not interested in antibodies. They only care about tsh. Heavy periods go hand in hand with hypoT as do fibroids, etc but NHS either does not know or does not care

  • Hi bluedaffodil, yes it seems that way... but if my antibodies were at 1000's would they be doing anything? or is it just as they are quite low.. I'm confused, does Hashimotos only kick in when they are above a certain level? I definitely feel not great :(

  • Mine were over the top limit of 1200 my reading was >1200 and the consultant still said do nothing! He said thyroxine might make me feel better but so would speed!! I did find a GP who would start me on thyroxine in the end. I still am not feeling happy about my treatment though.

  • Have you considered eliminating gluten? This could be of interest if you have not seen this before. Isabella Wentz shares her experience and journey to recovery from Hashimoto's thyroidpharmacist.com/

    Again, Dr Williams work, Wheat belly, and the reviews of many people recovering from Hashimoto's

    Selenium can also reduce antibodies.

  • yes, I'm doing that! and I have seen Isabella' site, thank you so much .. I've also bought some selenium today!

  • Hope you'll see good results soon.

  • me too: I'm a huge cocktail of supplements.. and have gone gluten free.. I do feel some difference it has to be said...

  • NHS don't know what to do with thyroid antibodies so the easiest option is to just pretend they are not there! I experienced this when I had high TPO diagnosed. I had to ask for the test, GP spoke to endo who just said to change my levo dose from 75/100 alternate days to 100mcg every day.

    I now follow GF and dairy free diet and I take Vit D, B12, folate and selenium tablets every day. I am just waiting for the results of a urine test to check my Iodine levels to see what I do next. I do feel better but still not 100% Hope you manage to stay on top of your antibody issues.

  • I'm coming to your post late but only just started here so I'm still finding my feet.

    There is a possibility you may not be told about. If you have got the start of Hashimoto's you need to completely cut out gluten and unfortunately Levothyroxine has it in as a filler. Your TPO antibodies would indicate Hashi's as I have been finding out over the last week or so and the more I find out the more I realise that the NHS won't treat this as an autoimmune condition but as a thyroid condition.

    If you treat the underlying cause of the autoimmune response you may find you get a reduction in antibodies and as yours are low (mine were in the 300 mark) you may be able to nip that in the bud.

    I can highly recommend Izabella Wentz's book Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause. You may find it heavy reading especially if you have brain fog but that book is becoming a firm friend! Good luck. Just know you are not alone!

  • Interested in this. My tpo was in the 700s and started on levo two weeks ago. I have started to cut out gluten bit by bit, swapped bread and pasta for gf but if I go all out and cut it all what medication would be available?

    I thought I read somewhere that all UK meds were gluten free?

  • Be very careful of the Gluten Free section in any supermarket. I've found this isn't the way to go really and I'm looking into going for an autoimmune paleo diet and phasing out most of the alternative replacement foods. Most of them cause my blood sugar to spike way more than gluten ever did and so I'll be throwing out my gut flora as before by using them.

    It is a total pain in the proverbial though and to be honest part of me is ashamed to say that I am going to really miss cheese, I always used to say I could give up everything as long as I could still eat cheese but that may be out too!

    As for the gluten issue in tablets. The problem is the companies that make Levo will not categorically say there is no gluten in the tablets. I've read that the pink colouring can almost certainly contain gluten. It is all very problematic and I have yet to find an answer myself which is why I haven't taken any of the Levo I was prescribed yet.

  • My levo are white tablets and read the leaflet but can't see that it contains any gluten.

    Will look into diet as my daughter is on ketogenic diet so very similar in parts.

  • Thank you, yes have cut out gluten and I know about Izabella, so am doing the right things, following a mainly autoimmune paleo protocol and feeling much,much better! thank you for your support! Abby x

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