Is my levothyroxine increase making me ill? - Thyroid UK

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Is my levothyroxine increase making me ill?

JBL312 profile image
12 Replies

My last blood results indicated that I might benefit from an increase in levothyroxine and as I wasn't feeling great, I increased from 125mg to 150mg a week ago. Since then the nausea that I have been experiencing on and off for a couple of years has been constant. I have no appetite at all. I've felt extremely exhausted and heavy limbed and my mood has been hopeless. As I have suspected menieres, my gp has just given me some anti sickness tablets that give me a headache and put me on a long referral list. I'm so fed up of feeling like this. I'm thinking it's probably too soon for the levo increase to have an effect, but just wanted to check. I can't carry on like this. I haven't left the house for a week.

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Lalatoot profile image
Lalatoot

Weeks 2 and 3 of any increase are the worst for me. So much so that I have often given up and gone back on the lower dose. And then had to go through it all again as I really needed that increase You could split your dose to see if the lower spike as the hormones enter the system eases the sickness any.

If you feel that you needed the increase, hang in there. There is nothing worse than giving up and then having to go through it again.

JBLOVELL,

If you are experiencing nausea, lack of appetite, heavy limbs, low mood and exhaustion as a result of introducing thyroid hormones your GP needs to test you for adrenal insufficiency. A morning blood cortisol sample drawn at 9am at the very least. All the symptoms you describe are symptoms of adrenal insufficiency and it is important to rule this out.

edit: I can see from your previous posts that your nausea and persistent hypothyroid symptoms are ongoing and long term in spite of “optimal” thyroid blood levels. I would really urge you to speak to your GP about both primary and secondary adrenal insufficiency, to rule it out at least. It is possible that you don’t have enough cortisol to metabolise your thyroid hormones properly. Thyroid hormones speed up the clearance of cortisol, so if you are insufficient adding in more can exacerbate your already low adrenal reserves.

Beau55 profile image
Beau55 in reply to

I second this - please don’t persist with awful raises before checking your adrenal function, they aren’t suppose to feel like this x

in reply toBeau55

Yes, that encapsulates it perfectly -

Raises aren’t supposed to feel like this.

JBL312 profile image
JBL312 in reply to

Thank you. I didn't realise this. I will talk to my doctor.

in reply toJBL312

Please do it soon, taking thyroid hormones when we have adrenal insufficiency can be dangerous. It is very important to rule out given your symptoms and previous posts mentioning this as ongoing and you’re only eating a few dry crackers a day. When speaking to the GP ensure you mention the persistent nausea and lack of appetite when increasing thyroid hormone, this should signal to them that they need to investigate.

Ideally you want cortisol saliva too, but morning bloods will suffice. It needs to be 9am latest, and the result needs to be at the top of the range.

birkie profile image
birkie in reply to

Hi dontforgetcortisol💓

Can I pick your brain 🙏 I had low cortisol in 2020 so much so that the endo sent me for that test in hospital short saynthatic test (he said I was in the gray zone🤷‍♀️) , I to suffer from sickness, ( just been to the toilet this morning and I'm wrenching as I do most mornings, cleaning my teeth is awful🤮) I have lack of good appetite to and I feel like I'm walking through treacle, I also have bone vibration from my public bone through my leg bones into my ankles.

After the test my gp rang saying no further action as I'd responded to the test... That was that!! My last thyroid blood results were... TSH.. 1.77.....range (0.30....4.50)...T3.. 5.4..range (3.10.. 6.80) so in range but I feel bloody awful.. I'm having stomach and bowle problems with the T3 meds (Roma) lactose free I've tried T4 lactose free and still the problem persists.

Gp won't run cortisol again saying it was OK on the hospital test in that I responded so no need to test again 😠 I've just seen an endocrinologist in Liverpool but that was for a Parathyroid problem, I had the chlorine pet scan last week and the endo is rining me on Aug 30th to discuss the findings, I wanted to mention my cortisol to her when she calls hoping she may suggest a re test🙏 before I folk out the money for a private test. 💓

in reply tobirkie

Poor you Birkie! Can you request a copy of the synacthen and put them on the forum? It’s hard to confidently say what could be happening without them. Your symptoms sound very much like low cortisol, the nausea and trembling in particular. When bloods are “optimal” and we still don’t get symptom relief I think we should be looking at other systems - it seems sensible to look at your adrenals. See if you can get those results xx

birkie profile image
birkie in reply to

Hi dontforgcortisol❤️

Sorry for the late response but I've been feeling awful since Monday, I just put up a new post explaining what's been happening, woke up Monday feeling the worst ever constant diarrhea bowle pain /inflammation in the bowles, sweating, shaking, and the awful vibrations sensation in my lower and upper limbs.

I fought on until I could no longer take it, and decided not to take the t3 meds on Friday, been of them since Friday and today I passed a fully formed motion, no pain no cramps, although I'm still having small sweats they have eased a bit, and my tremors have eased a bit also, The vibrations are still with me😔

It appears to me the t3 is aggravating these symptoms, today I feel good, I feel hungry, and alert, the inflammation as definitely gone down and I don't look pot bellyed anymore.

The only thing that's giving me bad pain is my anus it's red raw with constant wiping (it's so sore).

I'm coming to the conclusion that I'm going to have to go to my gp armed with the pictures on my phone of what I'm passing on these meds, in the hope I can see a gp.. Because phoning up between 8am and 9am is not working as its always the same response.. NO APPOINTMENTS AVAILABLE 😠

Jaydee1507 profile image
Jaydee1507Administrator

Have you tried completely dairy free diet yet? I think you were considering this a few weeks ago. I'm sorry you're struggling.

JBL312 profile image
JBL312 in reply toJaydee1507

I actually haven't been eating much at all and definitely not dairy. Couple of cry biscuits a day. Thank you for your kindness.

Brightness14 profile image
Brightness14

Why not try 137.5 first before raising to 150 just a thought.

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