Diagnosis nightmare

Right so I have been back and to at the gp . They say I have thyroid immune disease but they can't treat me because one minute my levels are hyperthyroid next hypothyroid. They've basically said wait a year for another test by then you antibodies may have done their damage this seem crazy to me! No prevention guidance to reduce effects no information feeling I. The dark!!! I have all the symptoms and antibodies over 1000 yet they won't treat me or send me to a encro because my body hasn't hurt itself enough yet ??? Surely this is not the right way to go??? Help me please feeling lost ! My sister has been found to have 1cmnodules on her thyroid I'm betting iv got some to but they won't do any more then the blood tests until my body harms itself???

16 Replies

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  • When I was tested (after feeling very unwell for some years) my first tests came back hyperthyroid, I though they had given me someone elses results in error, but a few days later I went into crazy overdrive after being virtually comatosed. They took another blood test and that one came back seriously hypothyroid so they knew my thyroid must have completely packed up and they started me on levothyroxine. I rapidly plummeted into a horrendous hypothyroid state and got those tablets just in the nick of time.

    They could not treat me when the test came back hyperthyroid because I already had too much thyroxine in my body and adding more could have been lethal. You may vacillate between the two states and that will be why they can't risk treating you at present. Eventually the antibodies will destroy your thyroid and you will become permanently hypothyroid and need thyroid replacement hormones for the rest of your life. It is a tough journey I'm afraid.

    You will get lots of support and excellent advice from people here. I have found it so helpful and slowly I have regained my health thanks in large part to Thyroid UK. There are some very knowledgeable people here who will have a better understanding of your situation than I do and will offer really useful advice.

    I hope things go ok for you - hang on in there!

  • From what I understand, gluten is thought to be a significant contributing factor in hashimoto's - you could perhaps help yourself in the meantime by cutting gluten out of your diet to reduce the level of attack on your thyroid and let it stabilise?

    chriskresser.com/the-gluten...

    Indeed, it may even be worth just checking you aren't coeliac.

  • I would endorse the gluten free aspect - I have found it very useful (have hashimotos) You don't have to be coeliac to be sensitive to gluten - there is non coeliac gluten sensitivity too. I have recently gone paleo after a tummy bug caused me a lot of problems and have found that great as I seemed to have developed a reaction to grains since this bug.

  • It must be frustrating that you feel so I'll and your gp can't help you. I've joined a lot of support groups like healthunlocked and read all I could in small doses. Selenium and zinc help to bring the antibodies down and I changed my diet and cut out gluten soya and dairy. Find out as much as you can to help yourself even if they put you on levothyroxine they still don't treat the autoimmune part of this horrible condition hope you feel better soon

  • Hello Everyone, i'm new here and been reading all the posts eagerly as I wait for proper diagnosis, and have sadly had 'useless' GP problem. More experienced posters will know, but wouldn't it help Alex to see an endocrinologist, if it's just GP who's been diagnosing, surely they would be better informed how to deal with difficult symptoms?

  • Sadly not - many Endos specialise in diabetes and know little about Thyroid. Of course there are exceptions. Treating auto-immune disease needs a Functional Medicine approach - looking at the whole body. Sadly that is not available on the NHS at present. I was diagnosed with Crohns over 40 years ago but have had to work out my own journey - including Hashimotos diagnosed in 2005....

    People on this forum have shown me the way - acting as facilitators - pointing you towards good information. So it's all about reading and learning....and then putting it into action :-)

    Contacting Louise at Thyroid UK is an excellent option - she can provide a list of Thryoid friendly Docs and Endos....

    Hope you soon have a diagnosis...

  • Thank you Marz, yes Louise has kindly helped me with NHS & private endo list. How sad that lot of people outside see NHS as 'paradise health care' when in reality a lot of conditions need the patient to continually fight for what they need! I have Dysautonomia & still fighting [but, now wondering if blood pressure/heat intolerance/racing heart might be thyroid instead!]

  • I am not familiar with Dysautonomia - but see that it is an umbrella term for several conditions. That always makes me a little wary - as if they cannot find the root cause of symptoms. I feel your instinct could be correct and that your thyroid or the auto-immune condition could be the root cause of so much. You will see from my profile that my Hashimotos was only diagnosed at 59 in 2005 after 30 years or so of illness.

    Have you been tested for B12 - iron - Folate - Ferritin - VitD - these are normally low with Hashimotos and need to be OPTIMAL for wellness. Being low in these vitamins and minerals can cause many symptoms in the body - including some of the ones you mention. Do not let Your GP say normal when they are just in range.

    b12deficiency.info/signs-an...

    An excellent site that should prove helpful....

    I live in Crete and I am entitled to the Greek Health Service. We are also very well served with so many private clinics - even in the next village - for blood testing, scanning and so forth. It is also affordable for us both on UK pensions....plus a bit of holiday letting :-) We can also buy medicines without prescription and yes we keep our own Blood test results - reports etc. - so no having to deal with grumpy receptionists at the Docs :-)

    As Izabella Wentz says in her book - Hashimotos - The Root Cause - you have to keep digging.... :-)

  • Unfortunately like the rest of us you are dealing with dinosaurs they only way is to pay and go private and even then it's a gamble if you get a good endo

  • Hi, sorry to hear you are so frustrated. I can relate to that, unfortunately. The first available thing for you at the moment is managing your diet accordingly, since you know for sure you are autoimmune. There is a lot of info on the net about it. Just a couple of links to get you started thepaleomom.com/autoimmunit... - scroll down a little and you'll find some practical guidance with explanations and autoimmune-paleo.com/the-be...

    Personnally, started of eliminating gluten, noticed slight changes, nothing big, but I was not eating much wheat in the first place.

  • .Alex-wild

    It's good you have added wild as I know you should definitely be so. If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft in which he says that if you have antibodies you should be given levothyroxine to 'nip things in the bud'.

    The knowledge of how to treat thyroid gland dysfunction is abysmal unless your TSH happens to 'fit' and many of us don't as we are all different and the TSH varies throughout the day anyway.

    I hope you get medicated or you will have to 'do-it-yourself' which is ridiculous as our thyroid hormones are required in every single cell in order for us to function healthily and normally.

  • Hi Alex, sorry to hear that. From what you are saying, it sounds like Graves- have they given you that in your diagnosis. To be honest, am not sure how they treat Graves, though if your hyper on min, then hypo the next, would they treat it with thyroxine when you need it and anti-thyroid meds when you need them, an alternate combination maybe?

    I am hypothyroid, my diagnosis was 2009, though had symptoms for years before, but told by gp that blood results are normal. I only began treatment when my TSH increased so much that they decided to treat it - I don't know what my readings were at that point in time, however, I have asked for a thyroid antibodies test so I can find out the cause, but gp said it would have been done on first diagnosis. I don't know the cause of my hypothyroidism, and can only find out by requesting my medical notes for that point in time, which I am considering doing.

    If they wont treat you, is there another gp practice of endo you could be referred to? I am in the process of looking for another endo and gp practice, however, I live in a rural area where there is only one practice. A way around this could be to use my work address or uni address as neither of those are in my area and I know of a very good gp practice I would like to be with. Its something I am looking into.

    Hope this helps

  • How awful for you!

    Louise Warville has a list of reasonably sensible Endocrinologists. Ask to see one of them. You can't go a year in this state. If they still won't do anything useful, can you afford to see somebody privately? Again, there's a list.

    (Apart from anything else it is just appalling how they ignore how this runs in families. )

    Wishing you best of luck and better health.

  • What tests have you had done regarding your thyroid and what type of antibodies? If they are going by TSH..you will be able to add thyroid meds which may stop the attack. You really need a free t3 to determine if you are hyper. Do you have hyper symptoms?

  • I agree with Shaws on this. You have hashimotos thyroiditis. The most common form of hypothyroidism. Unfortunately you swing from hyper to hypo. Hormone replacement is needed to now to slow or stop the attack. p141-142 of Stop the thyroid Madness states this:

    "Why has the use of thyroid hormones stopped the attack in many patients? I suspect part of it has to do with your immune system.......When you give yourself the thyroid hormones that your body lacks, you then improve the health of your immune system, which in turn decreases the production of the crazy antibodies."

    stopthethyroidmadness.com/h...

    Have a look above too. Can you post your results that you have? It might give us a better picture

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