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’m on 300mcg, however I have congenital hypothyroidism and have no thyroid at all so who knows if I need that much - awaiting blood test results as I feel it’s too much. I wouldn’t bank on feeling ‘completely back to normal’ though on thyroxine as it’s not a magical cure and some people are still symptomatic on levo. My dr is thinking of adding in t3 for me as I feel awful, lethargic, sluggish unwell etc and have done for a long time. Hopefully you will feel better on 25mcg (that’s what I was on as a tot it seems such a tiny amount) but give it 4/6 weeks and if you’re not feeling it go back for another blood test.

@Inyourwildestdreams 25 is really too low a starting dose for an adult they should start you on at least 50. You should start seeing a difference in a couple of weeks it really doesn't take long to start working. Take it first thing in the morning and you can eat 30 mins after. Try not to take any vitamins esp vitamin c until at least 4 hours after as they can interfere with absorption. GPs don't always know very much about thyroid unfortunately you could ask them to refer you to an endocrinologist. Also your t4 and t3 levels also may be in range but they have to be optimal in that range which a lot of GPs don't look at otherwise you just won't feel better. Your T4 should be mid range or higher and T3 should be in the upper quarter of the range. A gluten free diet can help bring down your numbers with hashimotos if you have it though it didn't overly work much for me when I tried it.

@DancingFerret you can get a levothyroxine in 75mcg tablets I take them

Yes I was on 87.5mcg at one point so alternated 75 and 100.

Thank you for the info. They weren't available per the BNF Formulary when I when my dosage was increased, albeit quite a few years ago.

Time to chat to my GP to ask them to change my prescription.

Levothyroxine didn't do much for me. Diagnosed 8 years ago, had very raised antibodies so Hashimoto's. Even an increase in dosage didn't have much effect so after joining Health Unlocked's thyroid forum I discovered I needed to investigate other vits/minerals statuses and also perhaps I needed T3 instead of the standard T4. Many years on and I now take T3 only (liothyronine) and at least mentally feel a lot better on that. I'm always having to improve various vitamin levels, currently Vit D is too low!

Hashi's is the gift that keeps giving, sadly. Some people do fine on only levothyroxine, but not everyone. However you do have to give it time to work and will need a dose increase or maybe several increases to feel OK again. It does take time.

I do that too! I have the wockhart brand as it has less fillers and I feel better on them. All in 25s

One thing to note and I cant see anyone who has mentioned this, you will have one of the conditions that entitles you to a medical exemption card - ask your GP surgery, a medex card gives you fee prescriptions for everything - very handy if you are under 60 and not on any qualifying benefits. Medical exemption certificates | NHSBSA

Thank you so much for all your advice. I’ve had a quick read through and I’m going to sit down on my lunch break and make some notes of things to discuss with my GP and things to watch out for etc from all the advice you’ve given.

Im feeling a bit overwhelmed by it all, I have to admit. GP didn’t even see me in person to discuss the results. She just called and said she was sending a prescription to the pharmacy for me and that she wanted bloods done again to check for Hashimotos and bloods done again in 3 months to check my levels again. It was literally a 3 minute phonecall with very little actual information!

I’ve been trying to tell my family and the GP for about 18m just how down and rubbish I was feeling and it’s all been shrugged off as being because I’m “busy, trying to do it all myself, too much of a perfectionist, and have a child that doesn’t sleep well”. I was actually at the point where I thought I was losing my mind 😔 I’m more tired and run down now than I was with a very tough refluxy newborn.
When it all came to a head earlier in the year, I got a full body dose of hives and woke up with a swollen mouth 😔 GPs and everyone around me told me it was stress. GP decided to do bloods initially to check for an allergy and that’s when the thyroid discovery was made.
DH is feeling a bit guilty I think as we’ve fought quite a bit over the last year because of my “moods”, which just isn’t usually like us at all. It seems that the busier I am and more tired I get, the more the insomnia kicks in 😔 so by the time he comes home from a few weeks at work I’m barely sleeping and feeling so run down and I’m just so grumpy and not myself at all. We also have a child who hasn’t long started at nursery and is bringing home every big under the sun which I seem to get every single one of so that’s not helping.

I’m glad the general consensus seems to be a 30 min wait after medication. DH works away for weeks at a time so our mornings are like a military operation trying to get to nursery drop off and get myself to work etc and the 2 hour wait doesn’t fit in my routine at all 😅

Thanks for pointing out about the exemption certificate. I’m in Scotland so we don’t actually pay for prescriptions anyway thankfully.

Fingers crossed that once my dose is sorted out I start noticing an improvement in how I feel 🤞🏼 And I’ll keep in mind about the optimal levels too. GP just said my other levels were fine but I’ll maybe ask for a printout to see what they actually are.
Going to make a big shift this week with eating and look into inflammatory/anti-inflammatory foods and start cutting out gluten and see if that makes any difference too 🤞🏼

Thank you all again! Happy to take any more advice that you all have 😊

Thanks for posting this my daughter has just been told the results of her blood test is low thyroid which tells us why she is sleeping 20 hours a day. Watching with interest.

My nurse told me to take my levo and my contraceptive pill the same time in the morning but I read online it’s not recommended.

I wake up to pee in the night so I usually take mine then!

Same here. Usually between 3 and 4am. I have to keep them in a dossett box though with the days on so I know for sure I've taken it.

75mg. Can't really say I feel much different but my levels are ok now.

75mg. Can't really say I feel much different but my levels are ok now

Should qualify that by saying my symptoms are mild and might not be down to that anyway. I just feel the cold and sometimes have difficulty sleeping.

I was never told to wait before eating after taking my meds. I was on 25mg for years, took them first thing in the morning then ate and my levels were fine until I got pregnant and then my levels went bad again and had to increase to 75mg.
My dad was told to wait 30 minutes after taking his, after he told me that I started waiting a bit before I have my tea (I don't eat breakfast any more now anyway so that's not an issue) but only about 15/20 minutes.

20 hours a day?
Is she getting other tests?
I hope so. 20 hours sleep is really not normal at all

Hi. I was diagniosed with hypothyroidism in April and started on 25 of levothyroxine - told I could eat after 30 minutes in the morning. After 6 weeks my tsh was back to normal so my dr said she wouldn't increase the dose. I still feel like crap though. Mine is Hashimoto's too.

@Instantcustard Hopefully in time you’ll feel better!! I’m still waiting on my further testing coming back to see if it’s Hashimotos. Dr received the results back last Friday but the receptionist says the Dr has scheduled time to look at the results this Monday coming 😩🙄

I was expecting some sort of suggestion for treating the Hashimoto's but the dr didn't suggest anything different!

I think the point re: when to take it is to take it "the same way" all the time, be that 10 mins before coffee, with tea, or two hours before eating.

You will absorb "more or less" the same amount with the same routine. Keep the routine consistent, and the absorbing is consistent.

Your bloods will show if the dosage is enough, the dosage is adjusted depending on how much you absorb...

Been giving Levi to my child since 11 days old. It's all about doing it similarly each day :)

You were borderline at 5, push them for frequent blood tests to get it right. In children you can test within weeks to get an indication of the dose is course correcting as expected. You don't need to wait 2 - 4 months (if they tell you that)

I take mine every morning as soon as I wake about an hour before breakfast & am careful to leave at least half an hour between the levo & coffee/caffeine as it affects absorption - https://www.verywellhealth.com/coffee-and-thyroid-medication-3233255

That's such a good point. 50mcg taken on a completely empty stomach followed by a two hour fast and optimally absorbed is going to be equivalent to a larger dose that you don't absorb quite as well.

Either way, you'll probably need to use regular blood tests to adjust your dose until you find what works for you.

If you can't manage to take things optimally then taking a larger dose in a way that means that you won't absorb it perfectly is fine as long as you're consistent. Levothyroxine is a cheap and safe drug - the additional burden on the NHS of giving you 100mcg rather than 50 is negligible.

Of course if you're washing it down with double espressos and hence needing a massive dose and/or still not getting the effect then that's not ideal, but as long as a normal dose relieves your symptoms and your bloods you should be fine.

Could anyone recommend an endocrinologist in London who would prescribe at sub clinical levels? And t3? Mine is between 4.5-4.7 and GP says it’s “normal” and not willing to prescribe. I feeling rubbish but I guess they could be peri too. But that’s why I feel a holistic chat with a good progressive endo would be in order.

You've done well to be diagnosed and get meds quickly! Yes I think Hashimotos is quite common with hypo. I had bloods back in mid May confirming I am hyper but so far only on beta blockers for a racing heart. There's a 2 month wait in the hospital to see the endochrionoly dept so I am focusing on treating my B12 deficiency with injections while I wait.

I had to push quite hard to get proper bloods done in the first place and have again this last week had to ask them to test for Graves (a hyper autoimmune) and they hadn't done the full thyroid tests, so you may want to check that is all being done (probably is if they have mentioned Hashimoto). Also check for any deficiencies as it is hard to pick out what symptoms are from thyroid if you have multiple as I do. Like you I suspect I have had this for a very long time unchecked which is hugely worrying, especially when I don't have a regular GP and only got to talk to the locum about it for the first time on Friday! So far I have found a lot of handy information on a site recommended on here by another poster https://healthunlocked.com/newsfeed

Re coeliac I have asked twice now to be tested - I am super hungry but get nausea after 4 mouthfuls or so then get terrible cramps (not helping with the deficiencies!). I've been sent for a CT which they then couldn't do as it would fry the thyroid with contrast...but as soon as it had been cancelled I've been booked in for another - GP couldn't tell me if they knew I had hyperthyroidism as apparently they can't contact the dept who book the scans. It is all a bit of a mess here and the brain fog from the B12 isn't helpful in figuring out what I need to do, but I think in general with autoimmune coeliac is often triggered alongside it.

I can't even get seen with a clinical diagnosis!

When I get up to go for a wee in the night that's when I take mine .

I have had hashimotos for 28 years. I am on 150mcg and take it what ever time of day I remember 🤷‍♀️