Really angry with Dr's at the moment. Is there anything constructive I can do?

I was diagnosed with Hashimoto's Hypothyroidism in 2015, I think I was probably Hypo some years before this and I think the Hashimoto's may have been affecting me for decades.

I had to ask for all tests (thyroid function tests, vitamin levels, antibodies test) myself. Struggled to get Levo increases. Was not listened to about how awful I was feeling. I had to really push for an endo appointment. First endo refused to prescribe T3, had to find another one who would myself (thanks to help from this forum).

Now I am on T3 and feeling much better, the depression I have had all my life has lifted and I'm less tired. It is still a work in progress, but I finally feel an improvement after struggling for so many years. And I am truly happy about that.

But I am also furious. My whole life I have been depressed and tired, unable to have any sort of normal life. I am angry at the waste.

I wish I had been tested for antibodies when I was first given a thyroid test, I feel these things should go together.

I wish I could have begun treatment much earlier. I wish when that treatment didn't work I was listened to. I wish T3 was readily prescribed.

Now, I love the NHS and am so, so grateful for it, I would be dead many times over without it. And they have diagnosed my issue and treated it. However, I just feel there is a lot lacking in the diagnosis and treatment of Hashimoto's and Hypothyroidism.

So, apart from this being a big rant, is there anything I can do to help with these things, petitions I can sign, campaigns I can get involved in, that sort of thing?

Sorry for the rant and thanks for reading xx

12 Replies

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  • Yes, I can understand your rant, considering that a dysfunction of the thyroid gland leads to very disabling symptoms (of which doctors/endocrinologists seem to be unaware) and only diagnosing by the TSH alone. Some may do a T4 but not much else when we should have the whole range initially, i.e. TSH, T4, T3, Free T4, Free T3 and antibodies at a minimum.

    Also when 'they are happy' with our blood tests and told that its 'nothing to do with the thyroid gland' when it is wholly to do with the thyroid gland as it's not producing sufficient for our whole body to work effectively. Many doctors are 'happy' if TSH is anywhere in the range, even at the top of it. They fail to know that we feel best if TSH is around 1 or lower.

    They will prescribe other medications for our symptoms, i.e. sleeping pills, pain relief, propropanol, antidepressants, antacid and anything else instead of at least trying an addition of T3 or allowing us to trial either T3 or NDT. We'd probably not need these other prescripts as our symptoms should be alleviated with optimum thyroid hormones which suit.

    You can become a member of Thyroiduk.org.uk who are at the forefront of trying to engage doctors to be more aware.

    thyroiduk.org.uk/tuk/member...

    We should also be tested for vitamins/minerals because deficient can also give disabling symptoms.

  • Thanks Shaws, I see there are campaigns and such listed on that page too which I shall have a look at :)

  • If it helps I was tested repeatedly from the age of 18 through my 20s due to very similar issues (depression, fatigue etc) and doctors found nothing. I had quite aggressive testing (thyroid, cortisol etc) when I lived abroad as part of a private testing and treatment programme to identify and treat mental health issues and absolutely nothing out of the ordinary was identified. So it is possible to look for these things and not find them.

    I do feel thyroid issues were at the heart of it because since being a child my heart rate and temperature have always been low, I've always been introspective and introverted and taken some time to come up w the right words etc, which are all traits I associate w uat.

    I'm so delighted to no longer suffer w depression that I can't bring myself to feel too bitter about the years I lost. But I think I understand why you're angry, it seems normal to feel that way.

  • Thanks puncturedbicycle. I'm working on not feeling bitter, and just trying to be grateful that something has been found which helps. The anger will pass I'm sure.

    I'm glad you're feeling better :)

    Just out of interest, were you tested for antibodies for Hashimoto's over those years?

  • I can't say w any certainty as it was a long time ago (late 80s) but it was quite extensive testing so I think they did whatever the state of the art was at the time. We have been ill-served at times due to the limitations of the available technology, but that makes it all the more galling when the current technology just isn't employed for no apparent reason.

    Glad too that you're feeling better. :-)

  • I guess I am also forgetting that technology and understanding/recognition of things may have moved on since I maybe started showing symptoms. Lets hope it continues to improve :)

  • Tbh I have no idea when it became a diagnostic thing to test for ABs - it may have been going on for ages - but you kind of hope when they DO have the means they should deffo use them to help and sadly they don't always.

    Remember also that the goalposts sometimes move, so the tsh guidelines in the US used to be similar to here, they then changed the parameters to allow more people to be diagnosed and treated for uat, but last I heard they were changing them back again Imagine being the person whose test results show uat using the 'old' range the day after that is phased out!

    Being angry about something like this is totally understandable, and some of it may be down to the shock of understanding your results. I'm sure over time you'll find the feelings will settle. x

  • Join the club. I was undiagnosed for years while given every other diagnosis under the sun. My TSH wasn't quite high enough, and I didn't know enough to ask for further tests, or challenge the lack of clinical observation (it was almost pre-internet so research was difficult). My then GP watched my career and my relationship founder without a care....

    Apart from campaigning there is little you can do, other than watch out in every group you frequent for people who clearly need to consider hypothyroidism.

    I am a bit cock-a-hoop at the moment because I told someone in my swimming class to take her thyroxine without her usual milky coffee and other medications. Two weeks on she is transformed! She has energy, isn't falling asleep in the afternoons, is cheerful! I've made a difference in someone's life, and it feels great!

  • Hi Ruthi I remember the post and am so glad you managed to tell the other lady and that things are looking up for her. It certainly gives you a good feeling when you have been of help to someone else. I bet she is really grateful you told her.

  • It's awful. I am so, so grateful for the internet, without it I would not be well. I am especially grateful for this forum and the lovely people on it who have given me advice and information, and have answered my many questions, and given me support at times when it seemed totally hopeless.

    I do watch out for it in others, and well, I talk about it quite a lot, so everyone who knows me knows about all my many symptoms! And they can then hopefully watch out for any of them themselves.

    That's great you were able to give someone advice that made such a difference, what a great feeling :) I am forever grateful to the person who suggested to me that I get another test for it, she changed my life :)

  • I am feeling cross today as well. I popped onto the site as I was eating my lunch and day in day out we see people who are so badly treated by their GPs and even endos. Surely there is no other disease that is so misunderstood and badly treated?

    Looking back I had symptoms for over 8 years before I was diagnosed. I had my thyroid checked in 2004 and was told it was borderline and to have it retested in a couple of months. Then I was told it was fine. No other follow up was suggested and I didn't consider it again. I doubt that antibodies were tested but I don't know, the doctor just may have ignored them anyway.

    When I think now about the tests that I did have in 2011/2012 - endoscopy, vaginal scans, heart monitoring and umpteen wasted journeys to the GP's surgery (and of course I was offered, but did not take, the dreaded antidepressants as I surely must be depresssed!) what a waste of money all that was.

    A full thyroid panel to include FT4 and FT3 and antibodies and an educated doctor could have saved the NHS a fortune!

  • I know, it's so misunderstood, we can only hope that understanding and knowledge improves and that there are those who campaign for it such as the people at Thyroid UK and the others who have started petitions and what not. And all we, as individuals can do is to try to educate the Dr's and specialists ourselves and do our own research (not easy when you feel like you've been hit by a bus and your brain's full of fog). And, as Ruthi pointed out above, try to watch out for other people showing symptoms and raise awareness in those we know.

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