Frustrated!: Hi all. Sorry to just want to have a... - Thyroid UK

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Frustrated!

Hiraeth profile image
4 Replies

Hi all. Sorry to just want to have a bit of a rant, but I'm new to this site and to the revelations of thyroid problems and how much they can affect you physically and emotionally. I have suffered quite debilitating symptoms over the past 20 years which have always been diagnosed as being depression/anxiety, despite the long list of horrendous physical symptoms that I have experienced. During this time, I have seen so many so-called experts and paid thousands of pounds in the process, and have given them a list of my symptoms while saying that I don't believe that depression/anxiety is my main issue. This has been ignored as every blood test has come back 'normal'. I have known that something else was the cause of my symptoms but no-one has believed me.

I'm getting blood results back tomorrow, and this time I won't be accepting that they are normal but getting a copy and investigating things myself. My main source of frustration at the moment (I am currently going through a really bad patch) is that I don't think that family members and friends believe that I have underlying physical issues that are causing them. I can see it in their eyes when I explain what I have read about normal test results and the effect of thyroid disease and vitamin deficiency on the body and mind. They think I'm being crazy and that I should just accept that I have depression/anxiety and just live with it the best way possible (I have been on various antidepressants for the past 20 years with no real relief). I can't accept this and never have. I think just because I have always been able to put a brave face on and get on with it most of the time, and don't go on about the pain I'm in or the horrendous sleepless nights, they think that I'm just anxious when I say that I feel like I'm losing my mind because I'm so confused and can't remember anything. Sorry, just wanted to vent my frustrations this morning. No need to reply! Thanks for being here.

Hiraeth

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shaws profile image
shawsAdministrator

Hi Hiraeth

I think our instinct tells that all is not well with our body. Many of us have had diagnosis for anything other than a thyroid gland dysfunction, either by not being given a blood test for the thyroid gland, or test 'normal' and the doctors have, nowadays, no knowledge of the clinical symptoms which used to be known by medical students before becoming doctors before the blood tests/levothyroxine were invented in the 60's.

No-one who has never had a dysfunction of their thyroid gland can even in their wildest dreams know what the person is or has gone through. Many are diagnosed with a mental illness, been incarcerated etc due to the inability of the medical profession to know clinical symptoms of illnesses. With the thyroid gland it's all about the TSH being 'in' or 'out' of normal range. I myself didn't know where the thyroid gland was situated. We have always gone to the GP, been given medication for a 'problem', took medication and it resolved. That doesn't always happen with a dysfunction of the thyroid gland as there are about 300 symptoms in all and no notice/knowledge about even the most common.

When you get your blood test results, with the ranges, post on a new question for more comments.

Some links for you.

thyroiduk.org.uk/tuk/diagno...

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

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

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

You can borrow or buy a book from Thyroiduk.org.uk called 'Tears Behind Closed Doors' by Diana Holmes. If you borrow you pay the postage. I would recommend it and also either Dr Peatfields (he withdrew his licence as he was pursued because he treated by symptoms) and Dr Skinner's - died of a stroke - appeared before the GMC 7 times due to his diagnosing of thyroid dysfunctions. He and Dr P were trained in the 'old school' of listen to patient, take note of symptoms, family history etc.. They used their brains and experience rather than diagnosing by a dot on a computer print out which is appears the only way they diagnose nowadays. What a skill has been lost.

thyroiduk.org.uk/tuk/suppor...

We have to read and learn and your story is a common thread throughout the forum.

Clutter profile image
Clutter

((( Hiraeth ))) this is a support forum and people are welcome to vent their frustrations and let off steam when they need to. Healthy friends and family usually have implicit faith that what doctors say is always correct. It's good to educate yourself in order to maximise your wellness but its probably a step too far to expect family and friends to be as interested in the minutiae of what is, after all, your illness. Not many healthy people will understand how debilitating long term illness is and how it erodes your confidence. You aren't going crazy. Confusion and brain fog are typical hypothyroid symptoms and lack of sleep causes confusion too.

crimple profile image
crimple in reply toClutter

Hiraeth, coming to this site was the best thing I ever did. Everyone is eager to support and help you. I learned so much. I started off "just" being hypo, horrendous family history of hypo and was willing to believe that a tablet a day was all I needed. I learned about the importance of vitamins and minerals and seemd to be doing OK. Then I developed antibodies, but again this site helped me. I read several books about auto immine/gut issues and after going gluten and lacto free have almost got rid of all the antibodies. Problems with your thyroid mean you go on a steep learning curve. As you improve and your energy levels improve your life improves. At the end of the day you have to go with your instincts and how you feel. Nobody else can know exactly how you feel. Some can empathise with you and soem won't. You just have to go with what feels right for you. Good luck

greygoose profile image
greygoose

Hi Hireath, welcome.

No, nobody understands but us. Espcially not doctors! But you could briefly explain to friends and family that thyroid hormone is necessary for every cell in the body - and there are millions of them - to work correctly. And if there isn't enough hormone circulating, anything and everything can - and probably will - go wrong. And the symptoms can range from mild to horrendous. And they themselves could possibly have a thyroid disfunction and not even know it because doctors are so ignorant!

Tell your doctors that 'normal' is a programme on a washing machine and has nothing to do with a thyroid diagnosis, because what is 'normal' for one person is 'abnormal' for another (to put it another way, what is 'normal' for the spider is chaos for the fly!) and we are individuals, not numbers on a lab sheet. Besides, the ranges are so broad, it's difficult to be abnormal!

But we are here, and we understand, and we know more than doctors, anyway! lol Just rant away when you feel like it.

Hugs, Grey

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