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Thyroid UK
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Does anyone feel like they've gotten worse since diagnosis and treatment?

I think I am a bit low at the moment which won't help but since I was diagnosed last year and put on levo I feel like I am worse and my husband seems to think so too.

I am angrier...my temper is so short especially with the children.

I am so vacant and forgetful at home (not so much at work but I have prompts and lists galore)

My weight has gone mental but it could be a side effect of being down.

My sex drive has gotten worse.

I thought things would improve and I know I need my medication to be right for things to improve it just feels like the treatment has made it worse.

Sorry to moan I just wonder if this is common?

14 Replies
oldestnewest

Very common...in fact it's the reason this forum exists! :-)

What dose of levo are you taking? Do you have any thyroid and vitamin/mineral test results to share with us? The larger picture would help us to advise you.

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I have an endocrinologist appt next week following advice on here. Basically low vit d. High b 12'. Not low enough TSH. Lowish ferratin

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Hmm, no wonder you're feeling ill. :-(

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It's likely your dose is not right. This is a common problem. If you post latest blood test results people will help. Include vitamins tests if you have them.

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Going through the same side effects and on 75 levothyroxine... Spoke to the pharmacist as 2 different brands are hitting my stomach... He suggested I try the liquid form... Another 10 days to go till new prescription and will speak to doctor... If no joy, will go off meds altogether as I felt so much better then!

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It's like you're stuck in limbo.

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Eimear78

Yes I totally get exactly what you’re saying and totally sympathise.

For me, diagnosis of Hashis in March 2017 and the subsequent research into what it really meant made me notice the fatigue so much more. It was as if I’d given myself permission to finally cave in a bit, nap when I needed to and admit there was a problem after a decade of feeling rubbish. It was harder to ignore all the other symptoms though as finally the dots had been joined up.

I’m still not optimally medicated and spend each 6-8 weeks after a dose change waiting to test my T4 and T3 with hope that I might finally have ‘cracked it.’ I haven’t yet but I am determined that I jolly well will eventually! The advice on here has been brilliant- especially about supplementing- and I have my 81 year old mum and my husband (also Hashis) on the right supplements for their needs. I worry about my young daughter but, thanks to someone’s comment a few months ago, I have finally bitten the bullet and ordered her a full thyroid check with Blue Horizons, who accept children’s samples (Medichecks refused.)

Once my thyroid is properly sorted (whether or not that may require the addition of some T3 at some point in the future is a question I will address. It scares me but the wonderful folk on here will advise) I intend trying to sort out my non existent libido and all the symptoms of perimenopause. However, one step at a time...

I couldn’t possibly say all of this to many of my friends- there would be blank looks and incomprehension. We need much better awareness amongst the public of thyroid disease and better informed medics but, until,that happens (!) I can at least point any friends who complain of a litany of symptoms in the direction of Thyroid UK and hopefully help them achieve a diagnosis and optimal treatment as best I can.

The advice above about posting your results on here for advice and getting your vitamins checked is perfect. Best of luck.

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I feel like no one understands apart from on here. Not even people in my family.

I had blood tests and there are issues but I have an endo referral for next week.

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Well that’s a positive step. Let’s hope you get some help. Out of interest, I clicked on the ‘people near me’ option on this site and found I’m only a couple of miles from a wise and regular contributor to the forum. We met up for coffee before Christmas and had a lovely chat. It helps to know you’re not the only one in the locality. I’ve also found out that two acquaintances have Hashis and am helping them get the knowledge to become optimally treated through what I’ve learnt here. Again, I feel less alone. Anyone who doesn’t have this disease has a tough time of understanding how constantly rough it makes you feel.

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Thank you. I get paranoid that people think I am making it up or it's not that serious. I also wonder if I am overexaggerating

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No you're not exaggerating- it's a horrid disease. Luckily (?!?!) my husband was diagnosed just after me so sort of understands all my ailments although he's a typical man & doesn't seem to suffer so much! However, I make a point of not discussing it with friends as there's absolutely no point in alienating myself from them. It's boring and incomprehensible for them 😞😞

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I mention it once to my friends and then not again. As for my husband he was the one who thought I had hypothyroidism in the first place. He's gone through the mill a bit with me.

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I’m surprised though when I do talk about it - just how common it is ! Everyone seems to know someone with thyroid issues - loads of people have asked me about what I’ve been doing as I look so different after 19 years ! I just worked with a young guy in his20 s - & he’s just been diagnosed with Hashimotos too - it’s a very small world -

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I met up with a woman who follows me on my Twitter she also has Hashimotos- we were like twins with our symptoms !

I’d been on Levo for 19 ( wasted ) years - never feeling better , tired , over weight , exercise intolerant - food intolerances ( gluten makes me puffy fingers , legs etc inflammation) GP. WROTE Me off with M.E - I never realised there were alternatives until I read Amy Myers MD The Thyroid Solution ?

Now starting new journey on Nature Throid but costly with private Endo & all the supplements etc - the autoimmune diet has made the MOST difference - I lost all the fluid retention- 3 stone in 3 months ! Unbelievable- boring - hard to stick to - & I work in the food biz with chefs ! So it’s torture sometimes - but health & energy levels to me are everything . Wishing you the best too 👍

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