Dr: Can’t possibly be thyroid - must be CFS! Me... - Thyroid UK

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Dr: Can’t possibly be thyroid - must be CFS! Me: Are you having a giraffe!?

Hidden
Hidden

Background: been Hypo for 5yrs, been doing ok for the last year but started feeling really rough 2/3 months ago. Blood test 4 weeks ago came back “normal” and only tested for TSH (2.17 if anyone interested, saw today my level 12 months ago was 0.56!). I take thyroxine 125/150 alternate days.

So I went to the drs for the 3rd time in 5 weeks to try and get to the bottom of my “normal” TSH level however sill being very symptomatic for Hypo. I was told I need to accept that in the last 6 months the decline in ability to do daily tasks/work is due to Chronic Fatigue Syndrome (but I can’t be diagnosed or referred for another 6 months...). Therefore I must sort out working part time, and minimise my additional activity!? Ummmm... I already fatigue manage, pace myself, eat as healthily as possible, have good sleep hygiene, walk everywhere etc etc but this wasn’t heard at all.

I did slightly lose my temper (read hysterically cry in frustration ) and ask to try a consistent Thyroxine dose (150) for 6 weeks and test again. This has been agreed (but I’m told not to expect miracles) and they’ll test my antibodies (for the first time!!) too. I was recommended antidepressants (declined, I’d rather get to the bottom of why I’m tired not make myself neutral to the situation) and talking therapy (tried it, was told I was one remarkably good spirits for someone battling exhaustion everyday and didn’t feel the need to continue..).

Please tell me I’m not alone in the ridiculous battle to have a GP believe me that it’s my thyroid causing issues? Or am i being totally ignorant and actually I should accept an entire lifestyle change as “normal”?

10 Replies
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No, you're not being totally ignorant. Your doctor is. Most of them are! They would far, far rather 'diagnose' CFS, or something like, so that they can just get rid of you with a clear conscience - they've done their job - next please!

Do you have copies of your 'normal' test results? Did he test for anything other than TSH - which, at 2.17, is far from normal and explains your symptoms. Might be a good idea, if you can, to get a full set of tests done, privately. Otherwise, you will just be groping around in the dark, trying to find out what's wrong. :)

Hidden
Hidden in reply to greygoose

I’ve only ever been tested for TSH... current GP surprised antibodies not done which is why I was ‘allowed’ to test my theory of taking more thyroxine. As it’s a completely closed conversation trying to get anything more thorough is excruciating.

greygoose
greygoose in reply to Hidden

He cannot possibly know anything about your thyroid status with just the TSH. It tells you next to nothing.

I feel for you kxruthie - all shocking and unnecessary.........

I watched Izabella Wentz' webonnaire yesterday - it has really useful information and is an example of how Hashimoto's should be treated:

It ends today I think (hope link works:

From: Izabella Wentz <webinarinfo@webinarjam.net>

Date: 18 April 2018 at 00:44:51 BST

Subject: [Webinar alert]

Reply-To: Izabella Wentz <info@thyroidpharmacist.com>

Please proceed to click on the link to access the webinar room now.

Link : events.genndi.com/r/1/0/liv...

Oh, rubbish! You are undermedicated: the aim is for TSH to be under 1 and free T4 and Free T3 in the top parts of their ranges. CFS is largely (perhaps not totally) an invented illness to explain away poorly treated thyroid and adrenal problems. I'd ask for an increase to 150 every day at least. I'd see about changing GP - perhaps someone in your area on this forum has a recommendation for one with a clue. I'd like to feed GPs with this attitude a high dose of carbimazole to suppress their thyroids and then see how they like being told to manage on part time money and no activity. Pfft!

Hidden
Hidden

Thank you all for your supportive and reassuring commentary! I know me and know I’ve been totally mismanaged and yet can’t seem to get a ounce of sympathy or knowledge from my GP. I’m taking 150 from now and will breeze into a new blood test in May with confidence I’ll demonstrate a benefit.

Funnily enough was chatting to my mum and my Dads side of the family has many of my aunts and cousins with hashimotos sooooo think that is a definite possibility!

I have had this conversation with doctors so many times and was even stupid enough to take the antidepressants for a while (they made no difference). If it's not that it's patronising comments about being overweight! Stick to your guns and keep fighting if you can bear it ☺

Hidden
Hidden in reply to AlisonL

I know! I’m told that because I successfully lost weight on my current dose then I can’t be symptomatic. It’s so frustrating. I’ve been told countless times that it’s me not doing x or y (ie I’m not coping with uni studies, not coping with the death of my partner, not coping with the fact I need to lose weight...). It’s patronising and debilitating. I often get so anxious about attending GP appointments that I cry before I even say what’s wrong... thus I must be suffering from a mental health episode. No consideration applied to the idea that it’s the situation I’ve been put in that may be affecting me.

We shall stand strong together!

AlisonL
AlisonL in reply to Hidden

Well put, and oh yes I often end up getting tearful because I'm so frustrated with them not believing me! Which as you say just lends weight to the mental illness argument. It's sooo infuriating! Can't wait for you to prove them wrong when your new dose helps.

If you can afford it, Hidden (and we’re talking around the £100 mark for the full works of thyroid function and vits/mineral levels; or £60-ish for just the full range of thyroid function tests), I’d have private blood tests done. You can do them yourself via fingerprick. I’ve used both Blue Horizon and Medichecks and can recommend both companies, as can many of us here.

You’re absolutely right not to take this lying down - it’s not CFS or depression (and losing a partner isn’t about depression - it’s about grief (got the T-shirt on that one. Stupid doctor)).

Hang in there and either keep pushing for tests or, as so many of us have done, take matters into your own hands and order your own. I did and have never looked back. Many people here are incredibly knowledgeable and will guide you through what the blood test results mean when you get them.

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