Just had my first endocrinologist appointment and I'm more confused than ever!

Just had my first endocrinologist appointment and I'm more confused than ever!

Hello!

After about 10 years of feeling so ill and not knowing why, I finally thought I had some answers. Using this forum I had ordered blood tests and they came back with very high thyroid antibodies. (Results attached)

Having shown these results to my GP she reluctantly agreed to refer me to an endocrinologist and my appointment was today.

The endocrinologist just told me that most women are born with high antibodies and that it doesn't mean that I will ever have any thyroid problems. She said I don't have hashimoto's, and that I only need to worry about my thyroid antibodies when I decide to get pregnant. She also said that all my symptoms are nothing to do with my thyroid.

I'm just so confused, and feel like I'm back to square one.

I guess I'll have to get the money together and go private, but in the meantime, please can I have some advice (and reassurance)? Surely the antibody levels that I have isn't OK? And I thought that the high antibodies meant I did have Hashimoto's??!

Please help!!

17 Replies

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  • Well I don't blame you for being confused. What an odd assortment of opinions!

    As far as 'most women' being 'born with high antibodies' if that's the case I can't figure out why we're being tested for antibodies if we all have them. What a pointless drain on the nhs!

    These results say you have Hashimoto's; your thyroid is under attack and it is a matter of time before you're diagnosed. Your t3 and t4 look remarkably good under the circumstances but your tsh is too high.

    The thing about pregnancy is just about blowing my mind. So if you have no intention of getting pregnant you're fine and dandy and can go on your way without any meds - ?

    Honestly, I'm not a doctor, but if I were you I'd just look into self-treatment (ndt) and not bother with another endo. According to my straw poll half of them are certifiably bonkers like this one and the other half are ornery and rude and don't care if you're ill or if you get better. On the whole a decent gp seems worth more than a train carriage full of endos, and even if you don't have one you can keep looking while you look after yourself.

    But these are obvs just my own thoughts on the matter. :-)

    You might want to start supplementing your folate, iron and b12 as you're less than optimal on all counts and that may not only lead to further symptoms but can hamper how your thyroid works. Have you checked your d?

    What are your symptoms?

  • Thank you so much. It's just so reassuring to know that my results aren't right - something is making me feel ill so it just feels better to know what it is! It's so disheartening that I can't at least get an official diagnosis from the NHS!

    I've got to admit, the idea of self medicating scares me - do I have to keep it secret from my doctor? If I have to do it, then that's just what a have to do though!

    I'm low on vitamin d so my GP has me on 3,200 iu.

    I had an active b12 test done at the same time as these tests and it came out pretty good. 97 pmol/L (range 25.1-165).

    My symptoms are:

    Feeling exhausted all the time

    headaches

    dizziness/vertigo (every day when I wake up, and also if I exert myself at all, but even if I'm not yet out of breath)

    feeling thirsty all the time and always needing a wee (when I go to the loo I never feel like my bladder properly empties so already need a wee before I've even washed my hands)

    A weird sort of tingling that will only stop of I touch it, I get this in my knees, arms, scalp, nose and cheeks (not necessarily at the same time)

    A loud thumping/fluttering in my ear when I touch my face (this has been happening as long as I can remember, although it's getting steadily worse, and i no longer need to touch my face for the sound)

    My hands often go numb and I get pins and needles

    I often feel bruised all over, even though nothing has happened to me (and the is getting worse and worse)

    In the last couple of years I've had real sleep problems, waking up at 2 or 3 in the morning every night and not getting back to sleep (my GP has put me on amitriptyline for this)

    Painful joints, especially my wrists

    I get very bloated, to the point that I look around 8 months pregnant quite often.

    Thank you so much for your advice! :-)

  • Dear Lord. What a load of old rubbish! (Not your results, the Endo's comments!). Yes you do have Hashimoto's. Having raised antibodies is not the norm. Why would Blue Horizon's labs flag them up as 'High' otherwise? Your results are quite similar to what mine were when I sent off for them (I had lower antibodies but they were still raised). Your TSH is too high, showing that your thyroid is struggling, and that will only get worse with time as the antibodies continue on their merry way destroying your thyroid.

    Your B12 is way too low (mine was as well) and that will only add to your symptoms, you should get your D checked as well, City Assays do a finger prick test for just £28.

    You could also try going gluten-free (and even dairy-free) as this has been reported by some to lower antibodies. I think you'll need to find a more sympathetic and informed GP.

    Am not medically-qualified, as a disclaimer.

  • Thank you!

    My vitamin d is low, do my GP has me on a dose of 3,200iu.

    Weirdly my active b12 came back in a separate test as 97 pmol/L (range 25.1-165).

    I'm definitely going to do gluten free, but I have been reading a lot about the AIP diet as well - do you think that's worth a try?

    Thank you so much for your advice and reassurance! :-)

  • I had to google AIP. :D Auto Immune Protocol - stricter than Paleo it said! No gluten, no grains, no legumes, no dairy, no sugar, and no alcohol. Very, very difficult. Depends what food you eat now and what you like. For me, going Paleo is pretty much a no-go since I'm mainly vegetarian and I just can't eat predominantly meat - I don't like it.

    I think you have to find your own way. Start by giving up gluten (I found that relatively easy) and take it from there. See how you feel, maybe then think about doing a basic elimination diet. I tried giving up corn, soy and dairy (in addition to gluten) for 3 weeks (recommended by Dr Susan Blum). I've felt a lot better for that, digestively-speaking! Plus I started losing weight without trying.

    At the end of that you add things back one at a time and note any reactions. I'd also say to embark on a difficult restrictive diet will take a lot of planning and preparation, if you want it to succeed. Nothing worse than opening the cupboard when hungry and finding nothing you can eat! That's when it's going to crumble. :D Today I made my first chicken bone broth, and coconut yoghurt! But it's taken me some time to get organised and have the right ingredients in the house and so on.

    Certainly give it a go, what do you have to lose? :)

  • It just proves what we already know - that few Endocrinologists know anything about the function of the thyroid gland, nor the 300+ clinical symptoms.

    If they do take a blood test (like yours above) it is meaningless unless the TSH is over 10. That's all they've been taught, unfortunately. It is easy after that (so they believe) just prescribe levo and get the TSH in the 'range' even if it as the top of the range. Anything else patient complains of is 'nothing to do with thyroid hormones'.

    For you, you have to remain undiagnosed until the TSH slowly climbs to 10 and disregard of antibodies attacking your gland until the TSH finally reaches the magic number.

    So the 'experts' we expect to diagnose and treat do NOT. So we've to recourse to the internet and what about those who do not have internet - I assume they eventually die of 'natural causes' i.e. no thyroid hormones.

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

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

  • It really is about time something was done about the ignorance of the medical profession in regard to Thyroid Disease.

  • Sck-and-tired,

    Thyroid peroxidase and thyroglobulin antibodies over range are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

    Your thyroid gland is already failing because TSH is high in range. Your endocrinologist could prevent progression to overt hypothyroidism by prescribing Levothyroxine now.

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

    _____________________________________________________________________________________________

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

  • Thanks Clutter - it's a shame I couldn't have a forum member in the appointment with me. Even though I've read up a lot I felt completely flummoxed by her dismissal of my test results and wasn't able to argue my case better!

    I'm going to do gluten free. Do you know whether AIP is worth a shot? I've been reading a lot about it.

  • Sick-and-Tired,

    I'd be inclined to start with the less restrictive gluten-free diet.

  • Hiya,

    This is diplorable! Ask for a second opinion with a different endocrinologist, perhaps at a different hospital. Did the endocrinologist conduct their own blood tests? Sometimes, they won't accept tests that they haven't ordered because different hospitals/labs use different assay tests.

    Good luck.

    TT x

  • I hadn't even considered getting a second opinion - I'll look into the process of how you go about getting one!

    I pointed out to her how my tsh has climbed over the last couple of years and she reluctantly agreed to give me another blood test (to prove to me that tsh fluctuates constantly), and said that if they were OK then I wouldn't hear back.

    Thank you so much for your help! :-) x

  • You could ask your GP for a second opinion and be referred to an endocrinologist at another hospital or another one at the hospital that you've already attended. Look online for the hospital that you attended and search the department to see who works there and find out their specialism. Some endocrinologists will specialise in Diabetes rather than Thyroid or may specialise in Pituatory conditions or other parts of the Endocrine system. Once, you have more information you'll be in a better position to think about your next steps.

    Good luck x.

  • My appointment was actually in a diabetes clinic, and I had looked the staff up before my appointment and they are all described as "Consultant in Diabetes & Endocrinology", so I think I was onto a bit of a loss from the start!

    My GP was very reluctant to refer me in the first place, so getting a new gp will probably be the best place to start - I just wish I could know whether they will take me seriously!

    Thanks so much for your advice! :-) x

  • Perhaps you should wait and then have another blood test done at your GP surgery. If that shows your TSH going up even more your GP might treat you.

    Alternatively, ask your GP to trial you on Levothyroxine and see how you feel. Levothyroxine tablets are pennies and if these make you better then your GP can put you on the chronic illness register as having hypothyroidism and then he/she can claim the points to enable them to get the funding to treat you. It's worth a try.

    I hope this help.

    TT x

  • Brilliant! Thank you. I'll give that a go and let you know how I get on! :-) x

  • Good luck and keep me posted x.

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