Dr says 'no'!

With only a few weeks under my belt of this new illness I'm realising what a minefield I am in!Doctor today say I do not have Hashi's and they will do nothing but annual monitoring....this goes against everything I'm reading and learning. Should I be pushing the doctors to do more? / Is it Hashimoto's? / What's next?!

Please see my latest post below.....Hello - I wrote recently after discovering my TSH was 4.23 - at the top end of 'normal'. I had a new set of tests done after 8 weeks and I've just had the Anti-thyroid peroxidase results back and I'm 156 - well over the <34 level, (interestingly my TSH was 3.7 on the later test). I don't get to talk with my doctor till tomorrow evening, but putting it all together (and with the knowledge that I am a Type 1 diabetic), I'm thinking it looks like Hashimoto's.

Your thoughts on this would be appreciated.

11 Replies

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  • Anna - your doctor is one of the majority who know sweet FA about autoimmune thyroid disease aka Hashimoto's. Your antibodies at 156 confirm Hashi's. Unfortunately your TSH isn't currently high enough to satisfy your GP, many of them want you to reach 10 before they will prescribe levo.

    From thyroiduk.org.uk/tuk/about_... > Guidelines for the Use of thyroid Function Tests

    ".....

    Subclinical hypothyroidism can progress to overt hypothyroidism (full hypothyroidism with symptoms) especially if there are thyroid antibodies present.

    If thyroid antibodies are found, then you may have Hashimoto's disease. If there are thyroid antibodies but the other thyroid tests are normal, there is evidence that treatment will stop full blown hypothyroidism from occurring.

    ......

    Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, has recently written in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis. 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."

    You can email louise.roberts@thyroiduk.org for a copy of the article to show your GP. If still no joy I would ask to be referred to an endocrinologist.

  • PS Anna - in the meantime do everything you can to reduce the antibodies ie adopt a strict gluten free diet and supplement with selenium L-selenomethionine 200mcg daily and learn all you can about Hashi's.

    chriskresser.com/the-gluten...

    hypothyroidmom.com/hashimot...

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

  • Thank you SeasideSuzie - that's as I expected and the resources you've sent will certainly help my case. Because of the way the doctor talked to me I'm still a little confused.....She said that the raised antibodies are ONLY a predictor of what MIGHT happen in the future. When I said it was Hashimoto's she she that the antibodies alone do not diagnose that. I've read otherwise! How do I argue that point?!

    Also I read an article that suggested the level of antibodies directly correlates with the severity of later thyroid damage - is this right?

    Thank you so much for your support!

    Anna

  • Anna - Hashi's is progressive. Each antibody attack destroys a bit more of your thyroid until it is completely finished off and then it's full blown Hypothyroidism. At the beginning, maybe the person doesn't feel much, but at some point symptoms will be apparent and Hashi's flares (hypo to hyper to hypo swings) will probably be felt. This is why Dr Toft is suggesting that it's wise to start levo to 'nip things in the bud'.

    Raised antibodies are a predictor of what WILL happen, no doubt about that. The antibodies will eventually destroy your thyroid, end of! No one can predict how long it will take. It can be slowed down, hopefully, with a gluten free diet and supplementing with selenium. Some people need to remove dairy from their diet.

    "Also I read an article that suggested the level of antibodies directly correlates with the severity of later thyroid damage - is this right?"

    I don't see that at all. Antibodies fluctuate. Today yours are 156, next week they could be 30, next month they could be 300. Eventually the antibody attacks will destroy your thyroid, fact!

    All you can do is read and learn, print the articles from the more respectable sources, and of course Dr Toft is one. Print off the list of signs and symptoms of Hypothyroidism from ThyroidUK, tick off what applies to you and there is more evidence for you to show your GP thyroiduk.org.uk/tuk/about_...

  • BRILLIANT! Thank you so much for taking the time to help me (and hopefully in turn my GP), understand. I started gluten free yesterday and will look at getting some selenium asap.

    I'm sure, as time goes on, I will be calling on the wealth of experience on this site to guide my way!

    Today I'm focusing on diet!.....

  • Dear Anna,

    If you are type One Diabetic then it is most definitely Hashimoto's . As a type one you are also at risk of Coeliac Disease ( get tested for this before stopping gluten).

    Also Pernicious Anaemia, Low vitamin D , Addison's Disease.

    merckmanuals.com/profession...

    Sadly they all come together under Polyglandular Autoimmune Syndrome ( an umbrella name for a group of conditions). Myself & my boys are Polyglandular Autoimmune Syndrome Type 2

    When you say doctor do you mean GP or your Endo ?

    Assuming you have an Endo for the Type One Diabetes then Endo should be dealing with Hashimoto's not GP.

    Your Thyroid will swing bit for hyper to hypo until it packs up entirely.

    It is beyond important to ONLY test thyroid very early in the morning. Refuse all mid morning & beyond testing.

    My boys have Type One Diabetes,Addison's Disease,Coeliac , Hashimoto's,Pernicious Anaemia - so far - I have the same bar Diabetes but with addition of some other autoimmune stuff.

  • Goodness - what a lot to contend with for you all. Thank you for the advice. I have a consultant lead diabetes team but not specifically an Endo - I will be requesting that I have a consultation with one when I see my own GP next. Many thanks,

    Anna

  • If you have a good relationship with your Diabetes team I would just request they refer you thereby skipping GP - It will likely just be another member of the same team. Just email them.

    Your Diabetes Consultant - should be an Endocrinologist as Diabetes /Thyroid comes under Endocrinology Dept - He or she probably hasn't been introduced to you as such, but will be.

    In fact your team should be doing as part of your yearly bloods thyroid/coeliac disease tests.

  • Yes - just done that thank you!

  • Don't be shy to fire your GP if you start arguing with the doc regarding what is the right and proper thing for YOU, that is a very big stressor. Many of us here have fired our GPs or Endos, I am on my forth doc - and it was well worth the slight embarrassment. I drive a very long way to see my present Endo but it is well worth it. I listen to books on CD in the car so I don't notice the long drive too much it's a 6 hours round trip, but I only do it a couple of times a year, once to see the doc and an extra trip to pick up meds. The early stages of this disease are very intense, stick with it, read as much as you can and learn as much as you can, it will give you peace of mind being in control of your own health.

  • Thank you - I certainly will do!

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