It's all in my head!

Just got back from an appointment with the endo, I am so cross and upset, they have discharged me because there is nothing wrong, all my thyroid hormones are normal therefore nothing they can do!!

I said about my elevated levels of anti-TPO (>1000 range <100) and she said "it was explained to you last time and I'll explain it again anti-TPO just means that you have a slightly higher risk of going underactive sometime in the future (she emphasized the word slightly as though she really wanted to get this through to me), you haven't got thyroiditis and you haven't got hashimotos, you haven't got any type of autoimmune condition. There is no way the elevated levels of anti-TPO are causing your glands to swell or the tiredness or the lightheadedness or any of the other symptoms you've mentioned. What you are experiencing, I'm afraid to say is all in your head".

She went on to say that I should have my thyroid levels checked with my GP once a year, I stated that my doctors will not do the full thyroid blood test and that it's the T3's and T4's that matter and she replied with "the TSH is the best blood test to do because it will show abnormalities way before abnormal T3's and T4's show".

She refused to do blood test for aldosterone because my cortisol levels were fine and that means there is nothing wrong with my adrenals and refused to do an ultrasound of my throat because there is nothing wrong with my thyroid (in fact she said it's in perfect working order).

I got information about aldosterone and adrenals from stop the thyroid madness website which gave other tests which you can do at home, all of them I tried and all showed abnormalities, i.e. the fluctuation of your pupils when shining a light, the temperature readings and blood pressure readings, but this was dismissed. Has anyone else done these tests?

She said that she will write to my doctor to say this is in no way a thyroid problem.

So I'm not going to get any help what so ever from doctors so I was wondering if any of you good people could recommend anything I can do for myself to help make me feel better, apart from going gluten-free (which I adopted around 4 weeks ago) and taking a B complex to get my folate up. I unfortunately can't afford to keep having private blood tests done.

Sorry for ranting but don't know what to do now!!!

20 Replies

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  • Louise Warville at thyroid uk has a list of NHS consultants who are thyroid friendly. I what about going to your GP after you've decided on someone on that list, saying you don't appreciate being told your illness is all in your head and asking them to refer you for a second opinion to someone else, and tell them who you want to be referred to. If your doctor starts on that you've been reading too much rubbish on the Internet, then you will need to change your GP. and if you can find a lump in your neck in the thyroid area, then tell your GP and they should be able to refer you for an ultrasound scan on it, mine can and did.

  • I am so sorry for you that you have had such a bad experience. I would certainly ask your GP to refer you to someone else for a second opinion x

  • sounds so familiar!! how is your TSH?

  • sounds very familiar. good luck. I found lots of help on this forum and saw Dr P. I read his book. I am self medicating but not feeling great, so I can't offer much advice. Just to say that I feel your pain and best of luck!! x

  • I'm so sorry you're having these problems angel23 and agree with others here on seeing someone who is prepared to listen!

    I looked at your first post and wondered if you had any tests for B12 deficiency. Autoimmune thyroid disease and B12 are often interlinked and your symptoms certainly suggest you might be deficient,

    b12deficiency.info/signs-an...

  • I am sorry I cannot agree with your Endo. If your Anti-TPO is >1000 then you have Hashimotos. So Auto-immune it is. It's good that you have gone gluten free - it is a good start and should help to reduce those pesky anti-bodies. I fail to see how your thyroid is perfect if under attack.

    Have you had the basics tested ? - Ferritin - Folate - Iron - B12 - VitD. You need them all to be well up in the ranges for you to feel well. Are you on any thyroid medication - sorry I have not read your earlier posts.

    You may need to take Selenium as well as B12 on its own as well as a B Complex. VitD is important too.

    Sadly few Docs are conversant with auto-immunity and its many causes. Best to read up on as much as you can - sounds as if you have already. I too have Hashimotos and the TSH - FT4 - FT3 were all within range - but treatment commenced as my GP here in Crete said the thyroid would need support whilst under attack :-)

    Lots of VitC is good for the adrenals I believe.

    Sorry you are feeling frustrated - when things have settled you may be able to work out of plan just for you....and there is always this forum to offer support.

  • Ferritin, B12 and Iron all good, Vit D was low but latest is good 60 (I think). Folate is on the low side but not below range I am addressing this by taking a B complex.

    I also disagree with the Endo and my GP, Hashimoto's is what I have but they will not agree and although I think treatment is the way to go, they do not agree and will not treat, so no not on any medication. My TSH, FT4's and 3's always come back as normal!

    It is so so disappointing knowing that the people who are there to help just dismiss you!!

    Thanks for Vit C advice, I will start taking these as well

  • Was your D measure in nmol/L or ng/L - if it was the former - you still have a way to go. Maybe a dose around 5000IU's should bring it up to a good level....Divide your result by 2.5 to obtain the measurement on the website below :-)

    grassrootshealth.net

    In the above link there is a chart with doses linked to your results.....

  • it is 60 nmol/l it says the normal range is 50 to 200 nmol/l. I'm taking 800iu of vit d per day as prescribed by doctor but am getting some more to double it. To see if that helps

  • It needs to be more than doubled - it needs to be around 4000 daily. I take 10,000IU's a day . Did you see the chart and how it works ? Further into the site there is also a chart that links conditions with certain levels of D - it is interesting.....based on research btw :-)

  • Thanks Marz I shall have a look at that later

  • grassrootshealth.net/media/...

    Ahhh ! Found the chart :-)

  • I agree with Marz. You do have Hashi's. And that endo knows sweet FA about thyroid!

    But when you say all your results are 'normal', what do you mean? In range? Just in range is not good enough, it's where they are in the range that counts. 'Normal', is not a diagnosis, it's an opinion - and an ignorant opinion at that!

  • The results are well within range and look pretty good (I've posted most on the forum) so I can sort of understand why they will not diagnose me, saying that every time I have had the blood test done I have felt ok (nowhere near normal but ok). It's very difficult to go into the doctors and demand a thyroid blood test there and then.

    The latest only tested TSH (1.12 mIUL/L range 0.27 - 4.2) and FREE THYROXINE (16.8 pmol/l range 12 - 22).

    I get swings you see, sometimes I feel ok and sometimes I feel like death warmed up. The death warmed up feeling seems to be getting more frequent, more intense and lasting longer, I wonder if I order a test privately and wait to take the blood whilst I feel at my worst whether there would be any difference in my levels?

    I also mentioned aldosterone and cortisol levels (adrenals) because I read on stop the thyroid madness website that "dysfunction of the adrenals can result in high amounts of thyroid hormones to build in the blood (which we call pooling), making your free T3 labs look high in range with continuing hypo symptoms" (that's exactly me!)

    My cortisol has been tested but aldosterone hasn't so it leaves me wondering!

  • Well, that FT4 isn't very high. It's not even mid-range. So I doubt if your FT3 is high. Have you had it tested? I doubt if there's enough to pool. Although, I Don't know, of course!

    I would imagine that it's the Hashi's antibodies that cause you to swing. Hashi's is renowned for its swings.

  • Yeah your right, I know your right, I'm just looking at everything to find answers and to prove to the doctors that I'm not making it up, I want concrete evidence so that they can't argue! does that make sense?

    I'm sure everybody else on here feels the same, it's so frustrating when you know your right but because the doctors won't listen you begin to doubt yourself and look at anything and everything!!

    Yes my FT3's were tested back in January

    Free Triiodothyronine - 5.00 pmol/L - range 3.9 - 6.7 which is pretty good

  • Pretty good by whose standards? It isn't even quite mid-range - certainly not enough to pool, in any case. I think I would feel pretty ill if my FT3 were that low. Most people need it up the top of the range to feel well.

  • Sorry you have been treated in this way. I have had the same thing this morning myself with Endo. Had Graves Disease in 2008 and no treatment since 2009, said all OKish now and needs no more investigation.

    But did persuade him to do my T3, I think!! But in his sarcastic voice he told me, "it will show within range anyway", but spoke in an 'anything to get rid of you' tone. Amazing doctor, he could write down all my symptoms and just say that there's nothing wrong with my without any tests or examination.

    Think he had a gripe on because I requested a doctor off Louise Warvill's list, but didn't get him got this other nasty little man!!

    I am feeling as low as you at present.

  • Sorry your going through the same, it is not nice at all. It's great to have some support on here though from people who understand our frustrations.

  • Don't settle for that. Keep fighting for another referral.

    Slightly different in as much as I had a nodule & voice/ swallowing issues too but my levels were all in range. I paid to see a consultant who told me it was just me panicking in my head and 'off you go'. I got another referral without any help from my GP as I was incensed and refused to go back to this consultant to discuss a blood test and yet another biopsy when I spoke to his secretary. Was there someone else I could see? She sent my file to another consultant. A week after seeing him I had an urgent op to remove half my thyroid.

    I gave a review on the hospital website which was polite but was very negative about the first consultant. The patient liaison group got me an apology and my fee waived.

    I am now hypothyroid, have Hashimoto's and the battle goes on with my GP who have no idea about thyroid either. They too told me all in your head. Will refer you to a 'rehabilitation doctor' - basically do cognitive behavioural treatment! I do now have Levo but the side effects are still awful and I feel the lead boots that must be on my feet are getting heavier.

    I have self treated before which was probably the most effective and take vitamins as suggested here too. I may well end up doing that again. It gave me control as much as anything without the battle with the medical profession.

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