Under active thyroid - newly diagnosed

[Inyourwildestdreams]

Hello!

I hope you don’t mind me starting a new thread - I didn’t want to jump in on anyone else’s thyroid ones as they were a bit different 😊

Blood test (taken due to a case of extreme hives and swollen lips lasting 7 days) showed a TSH level of 5.02. Dr suggested retesting in 3 months which has been done and TSH is now 7.91. I’m not very clued up on the condition yet so don’t know the ins and outs but was told “all other levels are showing as normal and stable”.

No thyroid issues previously but now looking into it I’ve had so many symptoms over the last 18m or so that I just put down to me being really busy and run down with young DC and a busy routine.

I’ve been prescribed Levothyroxine (25). Can anyone tell me how long it was until they started noticing any differences? I’m assuming it’ll take a while to get the dosage correct etc but did you notice any difference even at a lower starting dose?
I’ve been advised it’s to be taken first thing in the morning on an empty stomach then not to eat for 2 hours afterwards which is meaning in having to skip breakfast completely and I’m feeling a bit hangry in the mornings. Is the full 2h wait really necessary? Obviously I’m trying to do everything “by the book” while things are figured out!

Currently have more bloods away being tested for autoimmune antibodies (? I think!) - would this then be Hashimotos? I’m still trying to get my head round all the information. And to test for coeliac disease - is coeliac common with thyroid issues?

Appreciate any advice or information people can give 😊

I take mine when it suits me, not on an empty stomach. It took a couple of months months for me to be totally back to normal

I'm on levothyroxine 50. Luckily it was the right dose for me from the start. I was told by a very good endocrinologist just to wait 30 mins before coffee/breakfast and that works for me.

Symptoms settled right down in the first 6 weeks, big relief. A friend who'd been hypERthyroid said it took a full year to feel 100% of the benefits of medication and I did find the improvement continued over time.

2 hours is ridiculous and not standard advice.

@DustyLee123 Thanks. Hoping I’ll notice a difference within a few months 🤞🏼

@mildlydispeptic I did think that 2 hours might be a bit over the top but I’ll stick with it for a little while and see how I get on!

@PrimalLass Is it not?! My GP was very firm on it.

I take my thyroxine last thing at night, try to make sure I haven’t eaten for an hour beforehand.

Same, I can't cope without tea in the morning

And yes antibodies is hashimotos

I was diagnosed by accident, was meant to be at dermatology but got sent to immunology. They were having a quiet day and decided to do some bloods as I have a couple of rare conditions
Came back as hashimotos

Agreed - standard advice is one hour before food or caffeine.

Other symptoms: extreme tiredness but also a special thyroid-related insomnia, dry skin, hair-loss, feeling cold all the time, depression …. 25 is a low dose so expect to increase. Some of us are on 100 or over. Personally, I did not feel like a new woman on the meds but I know others have done - I hope you do!

25mg won't be enough, and I would push for a higher dose.

You'll feel better in a week or two.

I also take mine at night... 150mg.

I had Radioactive Iodine so a completely non functioning thyroid so need a lot more.

Took me months of asking and I eventually changed doctors
I'm 5ft 10 and my haematology consultant rang my GP and asked if they were treating thyroids with homeopathy now or could I perhaps have a decent dose I love him
Changed doctors and now on 100mcg

I take levothyroxine first thing on morning, empty stomach and wait 40 minutes to have a cup of tea. Apparently the thyroxine reacts with calcium and makes it less effective.
I would say it will take 3 weeks to start ro see a difference, and thrn find your optimum level.

I’m on 100mcg a day and I take mine at night, I just find it easier to remember then. It’s the same with my pill. I was never told about taking it at a specific time or allowing time before/after food.

My doc was very non specific about advice (for taking my thyroid meds) but a fellow thyroid friend told me to take my thyroxine very first thing in a morning and since I've followed his advice I've been feeling much better.. Been doing this for over a decade now and I can absolutely agree with him.. I take my (125mg) meds each morning first thing and although I have suffered with weight gain and I am tired a lot its nothing compared to the tiredness I had before I got in a good routine with morning meds... I hope you feel better soon and I know its really overwhelming knowing you're on meds for life so big hugs xxx ❤️

I am newly diagnosed too, was 5.5 TSH so borderline/subclinical but am TTC so they have put me on 50 of Levothyroxine until I get to 1-2 TSH.
I’m meant to have bloods retested after 8 weeks, unsure if the dosage is meant to change if it it’s above 2 or if it would keep going down with 50

Diagnosed at 10 as a child no real discussion until my 20’s when had a womb infection I was told ‘your periods can be effected if you mess around with thyroxine as it was then said.

2023 - now seen a pre surgery spinal mri report with possible right thyroid module - please follow up with ultrasound; did the nhs as hell do this. Day before surgery they asked my parents to go through my app to get last blood test results.

2024 arguing unpleasantly as patent with GP - please test my thyroid - no said the GP you’ve had 2 tests in a year who quickly said wait (after I disagreed I’d knowingly had two tests) you don’t know your pre op bloods for a hysteroscopy showed you are on to much levothyroxine!! Jesus knows when I’d found that out.

Under the carpet the way they looked after the thyroid all these years since 1991. I cannot believe how appallingly they treated a condition which warrants someone a medical pre-exempt card with hyperthyroidism or maybe I should.

This is interesting I'm also a long term underactive thyroid patient. I was diagnosed at 13 and am on 200mcgs daily. I was always told to take it at breakfast but I may switch to evening

I was told take it first thing in the morning and no food or drink for 30 mins

I was diagnosed a year ago. I was bloated after my period, which wasn’t normal for me. Thought it was something serious. Didn’t get my bloods done for months, and then got them done in April 2023.

My levels were 50, they’ve come down to 20 now but have to be at 2 or under to be classed as balanced out.

I started on 25, then to 50 and no sooner had I started my 50, I moved up to 100. I get tested every 10 weeks.

The only thing I hate is not feeling skinny anymore. I used to be a 6-8, now I struggle to get into size 8s.

I'm on 50mcg. I take it first thing and don't eat breakfast anyway but wait 30m before I have (black) coffee, per the pharmacy directions

I take mine late evening.
as long as they are at the same time every day, doesnt really matter what time.

I dont have an empty stomach or worry about any of that.
Im on 200 so my thyroid was virtually not working.
Blood tests are always ok now

Hi, I have hashimotos! , ask for anti TPO blood test to check if you have hashimotos causing your hypothyroidism!

I know people are commenting saying there’s no need to take meds on an empty stomach, this is not good advice! Please listen to your doctor , wait 30min to an hour before having anything other than water. This ensures you are absorbing all of your medication! , I wake up to pee in the night so I usually take mine then!, but first thing in the morning is fine, by the time you’ve showered , brushed teeth etc it’ll be time to have your coffee etc , it honestly isn’t a chore! You’ll get use to it.

you need bloods repeating every 8-12 weeks , my doctor started me on 50. As realistically nobody really stays on 25. It purely depends on the doctor! , but your dosage will be adjusted based on both levels and symptoms! So please tell them if you feel crap. In range is not optimal! Most people feel better with TSH at around 1. But get t3 and t4 too.

Itl all be okay , eat anti inflammatory foods , this will help you to feel better! , you don’t need to cut anything out, just reduce inflammatory foods and increase anti inflammatory foods. I’ve noticed a huge difference! I don’t look puffy anymore and bloated all the time.

get enough fiber too! Constipation is awful and we are more prone to it! , I take dulcoease every few days too to keep things going if my diet hasn’t been great!

hope you’re okay , it can be quite a shock suddenly needing meds forever!

My DD has this and was diagnosed two years ago aged 10. She quickly went from 25mcg, to 50, to 100.

One thing that I will say is that if you're still not feeling better after (say) six months, then also ask for B12 levels to be checked. (To he fair, I think full bloods plus B12 should also be done alongside Thyroid bloods each time)

Pernicious Anaemia (B12 deficiency) has a 40% co morbidity with Hypothyroiditis.

Yup. DD also has Pernicious Anaemia (and iron deficiency Anaemia poor soul) It's an absolute bugger trying to juggle and keep the levels topped up!!

I started on 50 mcg, but now on 75 mcg - which is a pain because there isn't a single tablet for that dosage. I take three 25s instead of a 50 and a 25 - mainly because, dependent on the manufacturer, the 50 and the 25 were often the same size and occasionally I accidentally took the wrong dose.

Also, I'm not if you know, but your thyroid diagnosis means you qualify for free prescriptions - for everything, not just thyroxine.

I have all my week's meds pre-dosed in a little box by my bedside and have trained myself to take them the instant the alarm goes off, then I hit snooze and go back to sleep for fifteen minutes. Then I get up for the second alarm, and by the time I've been to the loo and made my first tea my 30 minutes is up.

If I happen to be woken up briefly sometime between 4am and 7am by a bin lorry or a bad dream then I down the meds then, to give them an even better shot.