Thyroid

[knivesnflowers]

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.

i'm the same w the hypo / pcos combo and have never felt a massive difference either - been taking it since i was 14/15 and am 21 now. i have hashimotos though and was diagnosed with cfs at a similar time because the meds did nothing for my fatigue symptoms after bloods showed my hormone level was stable. never helped with metabolism or weight either but have put that one down to pcos too.

not a caffeine drinker but was told 30 mins before eating and that my morning cordial was fine. just remember that an empty stomach means a certain amount of time after food too - assuming based on antibiotics that two or three hours would be fine?

 

[25ag]

Hypothyroid taking levothyroxine - has anyone noticed hair thinning at all?

Yep it’s horrible because I used to have such thick hair aswell before I was diagnosed and started taking Levothyroxine. If anyone has any recommendations for how to stop the thinning or any advice to get back some thickness.. I’d really appreciate it!

 

[hettywainthroppp]

People that have had thyroid surgery…did you have a numb bit of your scar? I’m 4 weeks out from a hemithyroidectomy and the middle of my scar I cant feel the sensation of touching it

Yes that’s completely normal, I couldn’t feel anything in certain parts of my scar for a long time. I can’t wear a polo neck top anymore either as it feels strange. The sensation will come back, the nerve endings are damaged so perfectly normal for numbness.

Hope you’re doing ok x

 

[mcfeez]

I’ve only had half removed so far so not on medication, but if it turns out to be cancer I’ll have the rest out then I will be. Probably overthinking things, just wondering if weight gain happens to everyone

Ah ok - so I think you would be put on synthetic thyroid drug i.e. levothyroxine or similar, if you do have the whole thing removed as your body obviously won't be making its own thyroid hormone anymore. When I developed underactive thyroid weight gain was one of the first giveaways for me that there was a problem, alongside crazy fatigue and very dry hair and skin. Try not to worry about something that may not even happen though! Wait for your results and see.

 

[CherryAcid]

I'm glad I have found this thread. I had a meeting with Occ Health at work who suggested I get my thyroid checked. I'm often anxious and depressed, i struggle with sleep, often getting only a couple of hours a night. Although im not massively overweight, I do struggle. A few years ago I lost about 40 pounds and the only way I could do that was a very very low ca dietl(ie well under 1000 cals) and extreme exercise. It was awful and of course I gained a load back when I tried to eat more. My heart rate can be very high at times and I go from feeling manic to extremely tired. I also have sharp painful tingling in my fingertips whenever its cold and massive stomach issues.

 

[TwooTwooTwitTwitTwoo]

I’ve (finally!) had my TRAB (antibody) result and have been told it’s come back positive. However I believe my thyroid levels are currently within normal range.

My OB has told me that Endocrinology want to retest my TRAB and thyroid function at 28 weeks, which is fine, but is a false positive possible?! I gather this indicates that it is autoimmune related and not pregnancy induced?

I don't think false positives happen really so it does sound like you had an existing autoimmune condition that has simply become symptomatic/presented now probably due to hormone changes etc due to the pregnancy.

I don't know that much about autoimmune thyroid conditions beyond what I read up on a few years ago but I'd imagine you will be closely monitored now. Also, if you feel unwell in the weeks or months following delivery then make sure you go back to the GP, don't just 'put up' with it.

I'm glad you have some answers and a clear plan in place for follow up etc. Hope you're feeling OK about it all and not too stressed out.

 

[ChampagneBox]

anyone else get painful blocked tear ducts after thyroidectomy? it’s now happened twice, I had an eye test in September just before my thyroidectomy, and no concerns then, but should I go back now I’m on levo? It’s only one eye

 

[TwooTwooTwitTwitTwoo]

I’m another postpartum thyrotoxicosis sufferer during lockdown too, so no access to help! Nine long months of weird weak jelly arms and a racing heart before I finally got answers. We’ve recently found multiple nodules on an ultrasound and I keep noticing I’m fluctuating between over and underactive symptoms frequently, did you stay permanently hyper, or did you also wax and wane? Our local endo service is overrun and it’s taking months to get seen for checkups, I’m not sure how serious it is and whether I should be pushing harder/making more noise, I hate feeling like a hypochondriac!

I was borderline for a long time and it did fluctuate into and out of normal range but once it had become properly overactive it stayed it. I'd had problems for years on and off though. I originally found out my TSH was reduced because I had an abnormal heart rate during an operation and they did blood tests.

One nodule grew quite quickly. I ended up referred on the two week wait cancer pathway, had a needle biopsy on 24th Dec and spent the whole Christmas period desperately trying to "make memories" because I felt so awful, I genuinely believed I could be seriously unwell. I'd had a lot of problems with it being overactive during the pregnancy earlier than year (and during and after the previous one) and they wanted to put me on Carbimazole (I think that's what it was) but I refused. I did have another pregnancy after that (not planned) and fortunately it didn't flare up as badly but the nodules really grew which led to the hemithyroidectomy.

I felt like a hyperchondriac too. So much so, I became quite anti doctors because at one point I was literally shaking head to toe all the time and they told me I was just very anxious and would have to inpatient me! It was really awful so yes do fight. You may need to ask for a conversion of T3 to T4 test. I wish I had. You know yourself best, not the GP. Push for what you need and be confident with it.

Just out of interest, have you got wrist pain? They tried to tell me mine was carpal tunnel but the wrong fingers hurt for it to be that. I've read bits that say it can cause wrist pain but I've never found anyone else who has experienced it.

 

[Beth1980]

It does depend on lab ranges especially for T4 to me your TSH is ok but your T4 would be low in range going off my labs ranges.

 

[monga]

Mine has been swinging for the last year. Am also having bloods done every six weeks and would be interested to know what they decide to do with you. I just feel it's endless blood tests but no action. I hope you get the right treatment and can enjoy the summer.

Yeah,I'm assuming it's levothyroxine if it doesn't come back up ,hope they offer you something soon is yours going up and down or too low ?

 

[ChampagneBox]

Anyone that’s had a thyroidectomy…did you start having weird food cravings? Not pregnant

 

[storminaDcup]

Sorry to jump in. My husband and I have started ttc and we are 3/4 months in, I track ovulation every month so we’ve been timing to that. I had a possible chemical pregnancy last month (very late period/faintly positive first response pregnancy test/period was a bit heavier than normal when it finally arrived.)

I noticed going through my file that my bloods that I had done last had my thyroid at 16.4 pmol free t4 and tsh 3.7 mu/l.

After reading up quite a bit recently, I see that my tsh should really be no more than 2.5 and I am wondering if this is linked to my missed miscarriage?

I saw an endocrinologist last week as I’ve been having symptoms including hair shed (no patches or anything but noticeable to me) flat mood, motivation on the floor alot, complete LACK of libido- I don’t struggle to orgasm but am never in the mood so to speak / never get horny, which is not helping ttc at all from my perspective.

My endo suspects I may have benefit from thyroxine but we are waiting for updated bloods to come back. What is it like as a drug to take? And how quickly does it act?

 

[hettywainthroppp]

So my doctor doesn’t seem to think that having half a thyroid, you’d need to take anymore than 50mcg of levothyroxine daily, as she said the thyroid that’s remaining will still produce the hormone naturally.
I’d just like to ask those who have had a partial thyroid removal and are taking levothyroxine what are your doses?
They’ve agreed to up mine to 75mcg from 50mcg, on a three month trial. But she does seem to think it’s too much.

 

[hettywainthroppp]

First time poster-

does anyone suffer with any heart complications or symptoms as a result of their thyroid?

Hey, yes me!
Have been referred to cardiology for a holter monitor to be fitted as I have a skipping heartbeat. Had half of my thyroid removed in 2018, skipping heart started early in 2019, and has been getting worse ever since.
I find it gets a bit better when I have an increase in levothyroxine, but comes back again when my levels aren’t right.
At it’s worst it can happen all day long for days on end, it scares me sometimes! 🫣

 

[TwooTwooTwitTwitTwoo]

I'm having thyroid completion surgery in a few days can anyone share their experiences of starting medication or what to expect in the first few weeks please?

I had the first half out nearly a decade ago which was straightforward and I didn't need any medication because I still had the other half.

How long does it take to titrate doses and stabilise your levels? Did your consultant listen to you if you said you felt unwell or was it just a case of you're in range so off you go?

I'm really worried that my body is used to running with borderline over activity and that I'll suddenly feel really unwell when that changes.

Do I need to warn my employer it could difficult or will I be ok? How quickly will I feel unwell if that's going to happen? Is it days or weeks?

I think I'm quite anxious. My thyroid has made me quite unwell in the past and although I'm glad the stupid big thing will be removed, I still have concerns about the future and my ability to function.

 

[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 🫖

 

[ChampagneBox]

People that have had thyroid surgery…did you have a numb bit of your scar? I’m 4 weeks out from a hemithyroidectomy and the middle of my scar I cant feel the sensation of touching it

 

[nefariousnellie]

For those with hypothyroidism, how did you broach it with your GP?

I’m 30 and have had symptoms of hypothyroidism for maybe the last year or so, some of them much longer. I feel so low energy all the time, I eat well most of the time with the odd treat day and takeaway etc but on the whole I’m quite good but weight isn’t coming off barely at all when I am calorie counting and exercising and then I end up in a slump for a couple of days because I’ve got nothing in the tank. I get solid sleep most nights and wake up knackered. My sex drive is barely there and I just think bloody hell I shouldn’t feel like this!

Thyroid issues run in my family so I suspect this may be the start of something, but I really don’t want my doctor to dismiss me. Any advice or suggestions would be appreciated.

 

[Begborrowsteal]

My hair had stopped falling out so bad, but now its coming out in clumps again ive requested more bloods.

 

[Bobbleowl90]

Totally understand what you mean! That’s the one thing I’m even more scared about then going in the first place - that they tell me everything’s normal and there’s no apparent solution to how I feel / my problems.

Keeping you in my thoughts, and if you feel comfortable, please do share your results! x

Thank you.

That’s totally how I feel too! I’ve thought for years that something isn’t right but it seems everything is just becoming more on top of each other symptom wise now, especially the coldness in my fingers and toes. I had a baby 12 months ago and I’ve managed to lose my baby weight but when I say it’s been hard work I really mean it. People say I’ve done it quickly and how well I’ve done but I don’t really tell them the extent that I don’t eat because I know the backlash I’d get. I literally just have to look at a cake to gain a stone!