Thyroid

[bourb0nbiscuits]

Sorry to hear you’re not feeling great.

I’ve been taking levothyroxine for 16 years, since my early teens, and have always taken it in the morning as per docs instructions. I don’t feel like it’s ever made a huge difference as to how I feel tbh. Part of me puts it down to a combo of having hypothyroidism and PCOS and that’s just how it is - but I’m also wondering if years of having no breakfast until a few hours after waking up is the culprit.

The rule I was told was no food, drink or caffeine until an hour after taking levothyroxine. This means I get up, take my meds, get ready for work, head to work and the first thing I eat is on my morning break around 10:30. 4 hours after waking up.

I might do a trial run of taking my meds at night and having breakfast first thing to see if I notice any difference.

Thanks , I’ve not had any advice about when to take it, just from found out about the caffeine from googling I think I’ll try at night too will be easier than avoiding food & tea 🫖

 

[Vidyagaymes]

I was told i Can take it Half an hour before food, sometimes if i wake up in the night when the kids come into our bed I take it there

 

[GamerLlama87]

I literally take mine whenever these days. I have a toddler who thinks sleep is for the weak and currently pregnant along with awful sickness if I don't constantly nibble on things so I'll be buggered if I'm gonna wait a whole hour before consuming caffeine and food

 

[monga]

Thanks , I’ve not had any advice about when to take it, just from found out about the caffeine from googling I think I’ll try at night too will be easier than avoiding food & tea 🫖

Have they not checked your levels after your treatment to see how much they’ve fallen? Maybe they need to increase your dose?

 

[bourb0nbiscuits]

Have they not checked your levels after your treatment to see how much they’ve fallen? Maybe they need to increase your dose?

Yes I had my levels checked a month ago , I hadn’t taken any meds since my treatment in April. When I had my bloods done they started me on levothyroxine 100mcg, got my next appointment in September & have to have bloods before that appointment.

 

[monga]

Yes I had my levels checked a month ago , I hadn’t taken any meds since my treatment in April. When I had my bloods done they started me on levothyroxine 100mcg, got my next appointment in September & have to have bloods before that appointment.

That seems quite a low dose for someone not producing any thyroid hormone, it’s good they’re keeping an eye it usually takes about 6 weeks before any changes occur.

 

[Meg78]

Pregnancy and thyroid goitre…..

*Autoimmune, positive TPO, T4 currently 15.4, TSH 1.04, not on any thyroid medication*

All signs are pointing towards me being pregnant, this is the first time since I developed goitre/nodules, and my throat is noticeably more sore currently. In my last pregnancy I was circling the drain and a classic Hashimotos case. My levels have actually improved postpartum as I’ve grown extra thyroid tissue (yay weird body!) so I don’t take levo or any kind of intervention except for a beta blocker. I’m a huge risk for thyrotoxicosis though.

Has anyone been through pregnancy with goitre? Does it stick around the whole time? Get worse or better? What should I be doing? I’ve left 4 messages this week for my endo but he’s MIA, and I’m super anxious about trying to avoid loss, if anyone has tips for dealing with this I would be very grateful!

 

[knivesnflowers]

had some bloods done on monday, and as of feb my TSH has jumped from 0.97mu/L (same in oct 22) to 3.4mu/L. i know it's within the normal range of <4 but with hashimoto's i'm sure it's meant to be lower. also can't find my T3 or T4 results anywhere on the app with my others but surely they've tested them too? no antibody results either but no idea if they're routine or not ( although i think they should be with autoimmune conditions!)

there's a note on the TSH to say no action needed, would i be a pain in the arse if i rang up on monday to talk it through with a dr?

 

[Beth1980]

Don't know if you are on medication but it seems the NHS (if you are UK based) only tests T4 if TSH is out of range, I have never had T3 tested and antibodies seems to be a one off test if positive.
Earlier this year I had to battle for an increase in Levothyroxine as symptoms had returned but bloods were in range ( top end) next blood test after increase showed I was over range so proved I was right.
NHS guidelines say they should go off symptoms and Thyroid UK recommend a TSH around 1 if on treatment, so I would definitely call your surgery and have all your symptoms etc ready to tell them.Hope you feel better soon.

 

[mcfeez]

Don't know if you are on medication but it seems the NHS (if you are UK based) only tests T4 if TSH is out of range, I have never had T3 tested and antibodies seems to be a one off test if positive.
Earlier this year I had to battle for an increase in Levothyroxine as symptoms had returned but bloods were in range ( top end) next blood test after increase showed I was over range so proved I was right.
NHS guidelines say they should go off symptoms and Thyroid UK recommend a TSH around 1 if on treatment, so I would definitely call your surgery and have all your symptoms etc ready to tell them.Hope you feel better soon.

Wow really? My TSH was around 5 last time my doctor discussed my results with me but said he wouldn't be keen on upping medication dose unless I am trying to get pregnant

 

[Beth1980]

I am on Levothyroxine and was just under 5, so in range in my area, but loads of original symptoms and they tried fob me off with ' you maybe in pre-menopause. I know if I go over 2 my symptoms return my last test after increase was still high over 4 but had no energy to fight for another increase. With the colder weather I know I will regret it as my body will be on overdrive just to keep a normal temperature. Sadly Thyroid conditions are not really understood by many GPs.

 

[knivesnflowers]

Don't know if you are on medication but it seems the NHS (if you are UK based) only tests T4 if TSH is out of range, I have never had T3 tested and antibodies seems to be a one off test if positive.
Earlier this year I had to battle for an increase in Levothyroxine as symptoms had returned but bloods were in range ( top end) next blood test after increase showed I was over range so proved I was right.
NHS guidelines say they should go off symptoms and Thyroid UK recommend a TSH around 1 if on treatment, so I would definitely call your surgery and have all your symptoms etc ready to tell them.Hope you feel better soon.

yep on 125mg levothyroxine and have hashimotos - assumed they'd need to test both to make sure my TSH isn't working 3x as hard for a measly dose of t4 (this is how i was diagnosed at 15 bc they suspected lupus at first). i asked for t3 one time on the rec of a endo consultant i was seeing for PCOS (feb bloods) and there was a silence like i'd asked for their first born as a blood sacrifice

i basically always have symptoms tbh - had them after stable bloods so was then diagnosed with chronic fatigue syndrome but i've basically been told to just live w it lol

 

[TwooTwooTwitTwitTwoo]

had some bloods done on monday, and as of feb my TSH has jumped from 0.97mu/L (same in oct 22) to 3.4mu/L. i know it's within the normal range of <4 but with hashimoto's i'm sure it's meant to be lower. also can't find my T3 or T4 results anywhere on the app with my others but surely they've tested them too? no antibody results either but no idea if they're routine or not ( although i think they should be with autoimmune conditions!)

there's a note on the TSH to say no action needed, would i be a pain in the arse if i rang up on monday to talk it through with a dr?

My thyroid problem isnt auto immune but if I were you, I'd ring. That's a huge jump in 12 months. Yes, I know it's technically within range but given you have Hashi's it's worrying.

My GP/lab only tests T3, T4 and antibodies if the TSH is out of range. Unfortunately even if they tick the box for what to test, it will still be rejected by the lab of the TSH is ok. My consultant tested everything but I'm not under him at the moment

 

[Beth1980]

Sounds familiar I have Hashimotos too and still have a lot of symptoms but when brain fog/ forgetfulness began to again affect my job I couldn't ignore it. I am only on 75mg now and the GP that did listen and diagnose has retired so I feel like you,we are just left to get on. So sorry you are not being properly medicated.

 

[knivesnflowers]

Sounds familiar I have Hashimotos too and still have a lot of symptoms but when brain fog/ forgetfulness began to again affect my job I couldn't ignore it. I am only on 75mg now and the GP that did listen and diagnose has retired so I feel like you,we are just left to get on. So sorry you are not being properly medicated.

same for you too it's tit when there's a diagnosed reason for how you're feeling (thyroid) and they still explain it away with stress/weight/hormones as if it's not their job to still do something about those too! when first diagnosed i was sent to another trust and it was literally less than two weeks between bloods and appt - would love to know where that urgency has gone
---
double post but just remembered my lymphocytes were slightly high on my full blood count - 5.28 when upper limit is 4.00. surely this is the hashimoto's aspect of the hypo flaring too? will definitely be ringing now

 

[Beth1980]

Make sure you do! I tell everyone now to ask for blood test ranges and not take in range as ok ( or even everything is fine from the person you get results from over the phone) as you can just be in range but it doesn't mean it is optimal.

 

[Hairraiser]

I’m losing my mind here.
So the last 7 months or so I’ve felt worse as time as gone on, I’m losing my hair rapidlyat the front mainly. I’m really low in mood, no energy at all. The main issue for me which is totally debilitating is being constantly cold. And I mean to the point where even an electric blanket, 15 tog duvet , and hot water bottle just ain’t cutting it.
I find if I sit still for long periods I’m get more and more cold, which I know is normal but I’m trying to warm myself up and it’s failing.
I’m also adamant my house is colder than it actually is, I feel like it’s freezing but my hubby and my son are both boiling hot. It’s a new build house so you’d expect it to be nice and warm. But I don’t feel like it is, I’m now convinced it’s me that’s the problem here. Please someone give me some reassurance that this a symptom of hypothyroidism, I’m 90% sure I have ir cause my mum has the same.

it’s driving a wedge between me and my husband cause I’m constantly complaining and also he is trying to reassure me but I know he’s only saying it to keep me happy.
I dunno, I feel like I’m on a slippery slope to my 3rd mental breakdown in the space of 3 years.

I also find sometimes that my legs and arms ache, it’s not constant but it defo appears now and again, especially if I’m cold.

I’ve got a nurses appointment for next week to have a blood test done, I’d really like a full check over but I know I’m lucky to even get the blood test! So we shall see.
Either way, I’m fed up of feeling like this now and can’t stop crying at every given moment

 

[Vidyagaymes]

It definitely is a symptom! I was freezing all the time before my diagnosis!

 

[Hairraiser]

It definitely is a symptom! I was freezing all the time before my diagnosis!

Did it make you so utterly miserable you just wanna cry all the time?

 

[Vidyagaymes]

Did it make you so utterly miserable you just wanna cry all the time?

Yes! I wore so many layers all the time but the cold was in my bones….

I also slept about 12 hours a day and still felt tired… wrote it off to having small kids to start with