Thyroid

[TJ90]

I have hypothyroidism and I have to stick to 1500 cals a day and walk about 40km a week, if I don’t, the weight piles on. I also have no sex drive and am constantly tired. I’m 30 and obviously on the medication for life now. I know there’s worse things in the world but quite frankly it’s a bit shit isn’t it.

 

[xbxbx]

Anyone Else With and under active thyroid heard about using selenium to supplement the levothyroxine? I lost so much hair and heard this can also help with that part of things…

Eating 1-2 Brazil nuts a day is all of the selenium you need. Admittedly they’re not the tastiest but give it a go and see how you get on.

Also, remember to take levothyroxine on an empty stomach and avoid caffeine and food for at least 30-60 minutes. This was the biggest game changer for me in terms of hair loss and regulating other symptoms. Some GPs unfortunately fail to tell patients how to properly take levothyroxine.

 

[ChampagneBox]

I got my surgery results today, unfortunately it’s minimally invasive follicular thyroid cancer does anyone have any experience of this?

 

[Vidyagaymes]

My medicine is starting to work! I don’t fall asleep at 7 anymore or feel cold all the time! My doctor also said my numbers are looking much better but I’m still not at normal yet. Feels like a relief that it’s working though. Honestly with the symptoms I was having I was really worried it might be something more difficult to treat!

 

[Bidscavan]

I've gone hypo now from hyper yet again.. Got meds reduced on Monday to hopefully bring thyroid back to an even keel. Have piled weight on and there's no shifting it. As for the fatigue good gawd. But whether it thyroid related , peri menopause related or long covid related god only knows. Thyroid problems suck

 

[WhatABore]

Does anyone suffer from thyroid problems? If so, what's your symptoms? What is your treatment like? Do you have to adjust your diet in any way?

I had a food intolerance test done where I sent away strands of my hair and it has come back showing my thyroxine levels are out of balance which and after looking at the symptoms, they all apply to me! Just waiting for a doctors appointment to have some bloods taken.

Sorry to butt in, just be wary that these food intolerance tests have no scientific basis what so ever and a lot are complete rubbish.

 

[Vidyagaymes]

So my blood results came back.
thyroid levels are fine.

I’m sat here crying in frustration as I was so sure it was my thyroid and that I was finally gonna get help for it!

So I’m supposed to just lose My hair in clumps, be freezing even in a warm environment, struggle to keep awake & feel low 24/7 for the rest of my life with no explanation.

ok
I don’t know how much longer I can take feeling like this

What are your numbers? You can be borderline but normal and still have symptoms?

 

[catmama1692]

Good luck let us know how you get on x

Hi! I contacted my midwife today and she's referring me to the area midwife that specialises in endocrinology issues and she's contacting the specialist to get me seen sooner

 

[xbxbx]

Hypothyroidism - diagnosed at 15 (now 29). Been on levothyroxine since I was diagnosed but have never felt like it’s made a difference. GPs don’t seem to give a shit and as long as they’re satisfied with the blood results then that’s good enough for them. I’ve considered going private but it’s just too expensive atm.

The exhaustion and brain fog is the worst. I can easily sleep for 12+ hours a night (and would if I didn’t have to go to work). I used to be fairly intelligent, nothing to rave about but I did well in school up until I was diagnosed then everything took a nosedive. Still affecting me now as I’m about 6 months behind on my college work and every time I sit down and try to get something done my brain just goes blank and can’t string a sentence together or concentrate. I’ve been in tears over not being able to focus.

Always have cold hands and feet even when I’m warm. Dry skin, dry eyes, brittle hair and nails, heart palpitations, low mood/mood swings, raging irritability, consistently crave sugar, bad circulation - get frequent cramps and numb/tingly hands and feet. Was always underweight and struggled to gain no matter what I was eating, now the weight has decided it wants to stick around and am no longer a bottomless pit

Also have PCOS on top of all that plus cervical issues. I wonder what it’s like to be illness-free

 

[ChampagneBox]

Hey,
Hope all goes well for tomorrow, I had a right side hemithyroidectomy in 2018 and honestly, the thought of it was worse than the actual op. I had internal stitches and glue to the outside of the wound, you would never even guess now that it had been done.
wide neck very stretchy tops for a week or two, and a lovely comfy pillow to help you sleep a bit more comfortably afterwards, they do advise you to sleep on a slight incline post op. Not much pain post op either, which surprised me.
Take a lovely warm blanket with you as I was freezing afterwards.

lots of love x

Thank you for the advice! It wasn’t too bad, not the most pleasant thing and the drain is uncomfortable to sleep with but bearable! I feel like I’ve got phlegm but I don’t think I have, but when I cough it sounds really weird But I can speak, although it’s like I’ve just lost my voice and a sore throat you get with a cold

 

[hettywainthroppp]

Thank you for the advice! It wasn’t too bad, not the most pleasant thing and the drain is uncomfortable to sleep with but bearable! I feel like I’ve got phlegm but I don’t think I have, but when I cough it sounds really weird But I can speak, although it’s like I’ve just lost my voice and a sore throat you get with a cold

I bet the drain is uncomfortable, I didn’t have one but I’ve seen plenty who have. Your voice will be weak for a while, but it will soon come back and get stronger again. I’ve lost the high pitch in my voice since the op, if I try to scream it’s silent.
Lots of rest and tlc over the next few weeks will help, I had a few visitors after mine but could barely talk so they soon left .

Hope you feel better soon

 

[Hairraiser]

So my blood results came back.
thyroid levels are fine.

I’m sat here crying in frustration as I was so sure it was my thyroid and that I was finally gonna get help for it!

So I’m supposed to just lose My hair in clumps, be freezing even in a warm environment, struggle to keep awake & feel low 24/7 for the rest of my life with no explanation.

ok
I don’t know how much longer I can take feeling like this

 

[TwooTwooTwitTwitTwoo]

Oh my goodness, I feel like I could have written this myself.
I think I’m finally starting to realise I’m not completely crazy.
I have an appointment Monday morning so will hopefully get a blood test done and some sort of reassurance.
at this point I actually want it to be a thyroid issue so I can treat it, cause otherwise I think il go crazy!

The bone cold feeling is awful. Although my thyroid became overactive, there was a period of time after I'd given birth where my symptoms swung massively between hypo/hyper. I'd be so cold my nails and lips were blue and I'd be falling asleep sat up, in the middle of the day. I took my temperature once during an episode and I was into the hyperthermic range. It was a really horrible time so I hope you get some help with it.

 

[catmama1692]

Hi everyone, I was wondering if anyone had experience of being pregnant with an over active thyroid? It got picked up in a blood test in July last year, got a letter in September to say I was on a waiting list and then nothing.. I fell pregnant in November and I'm currently nearly 13 weeks. I had a TFT a few days ago and now have 2 appointments with consultants in March but was just wondering if anyone knew the process and what they do in pregnancy?

 

[hettywainthroppp]

Having a hemithyroidectomy on the 7th April and I’ve never been had an operation/been to hospital as an inpatient before can anyone advise on what I should take? im thinking it might be good getting some button up pyjamas/shirts but I don’t want to waste money if that’s unecessary, but I’m worried it’ll hurt to lift tops over my head. Anything else I should think about taking?

Hey,
Hope all goes well for tomorrow, I had a right side hemithyroidectomy in 2018 and honestly, the thought of it was worse than the actual op. I had internal stitches and glue to the outside of the wound, you would never even guess now that it had been done.
wide neck very stretchy tops for a week or two, and a lovely comfy pillow to help you sleep a bit more comfortably afterwards, they do advise you to sleep on a slight incline post op. Not much pain post op either, which surprised me.
Take a lovely warm blanket with you as I was freezing afterwards.

lots of love x

 

[ChampagneBox]

Having a hemithyroidectomy on the 7th April and I’ve never been had an operation/been to hospital as an inpatient before can anyone advise on what I should take? im thinking it might be good getting some button up pyjamas/shirts but I don’t want to waste money if that’s unecessary, but I’m worried it’ll hurt to lift tops over my head. Anything else I should think about taking?

 

[TwooTwooTwitTwitTwoo]

Wow that does sound awful is it better and under control now?
Thank you so much. I don’t know if I’m being dramatic here but it’s really affecting my marriage.
My husband is completely sweating his tits off while I’m sat here shivering with blankets, hot water bottle etc. I beg to turn the heating on and we argue about how expensive it is and how the house is already boiling. I just worry so much about my son being cold and if he feels the cold like I do.
My hubby reassures me daily that my son is lovely and toasty warm. I think I’m driving him insane keep going on about it….
I wish I could just relax but I just struggle so much

Mine is sorted now, thank you. It went fully overactive in the end due to a multinodular goiter so I had half removed. The other half is big, noticeably big but it isn't compressing my windpipe which was the case when I still had the full gland and my levels are all good now.

It was a rough few years though, at one point I lost a lot of weight in the space of a fortnight and ended up weighing under six stone. I had awful muscle weakness as well and lost quite a lot of hair at the temple, I looked like I had a really bad receding hairline. I also developed darkened skin patches in various places. It's not a particularly nice illness to have and I found a lot of people didn't even know where the thyroid was located, nevermind what it does.

I'll keep everything crossed for you that if your bloods show a thyroid problem that you can get the tight treatment. It's not always as straightforward as you'd think it might be to get the help.

 

[Blue raspberry slush pupp]

I’m convinced I have issues with my thyroid,had a test done years ago and it supposedly came back ok but like others I’m always always tired!! I could sleep all day and still sleep all night,constantly trying not to drop off. Hard to lose weight,always always cold,thinning hair .
I feel like sometimes I can literally feel the thyroid in my neck aching (I know I sound mad lol)
I’m just so sick and tired of always being tired but I’m sure the doctor thinks I’m exaggerating or a hypochondriac but I’m not, I hate feeling like this and would love to not have to go there complaining lol

 

[xbxbx]

I found selenium helped. I started taking it on the basis it may improve T4 to T3 conversion. I don't have a thyroid (hyperthyroidism that never responded to medication so I had a thyroidectomy). Since they only monitor T4 levels when you are hypo, I wondered whether my T4 to T3 conversion was subpar and that may be impacting my mood. After I started taking selenium daily, I ended up having to drop my levothyroxine dose because I was symptomatic and my levels showed oversupplementation. I also half heartedly do the autoimmune paleo diet (in that, there's quite a lot of overlap with FODMAP which I tried for my IBS and through trial I've worked out what foods I'm better off excluding and those seem to be on both lists).

After my thyroidectomy I was stable for years. Then it all went a bit whacky. Maybe stress/hormones/ageing. My dose was dropped slightly and I developed bradycardia. Dose was increased back again and I ended up with all the hyper symptoms again. So now I alternate between 2 different doses and with that and the selenium and AIP/FODMAP I have some kind of balance.

It’s funny you mention selenium. After my last post I bought a pack of Brazil nuts as I’d always heard they were good for thyroid function but never really looked into why, turns out they’re high in selenium. I’ve been having 2-3 of them in the morning for a couple of days and today is the first day in months, possibly a year, that I feel good. It might be a total fluke but I genuinely think it’s the nuts/selenium that’s making me feel this way. I’ve only been back on levothyroxine for a week so I feel like it’s too early to see such a noticeable difference, but perhaps the combination of being back on the meds and the intake of selenium are working together like a dream.

Today should have been a day where I felt awful. No caffeine, minimal water, pretty much ate nothing the whole day, work was horrendously busy, short staffed due to annual leave and sickness and I had to unexpectedly stay behind over an hour after I was due to finish. Any other day my stress and anxiety would’ve been through the roof and I’d have been making myself feel ill trying to get as much done as possible, yet I was completely ‘zen’ the whole day. Nothing phased me. I was calm, worry-free and just got on with things. I even had a colleague ask ‘why are you ok’, because this is so unlike me. I REALLY hope this feeling continues because it’s absolute bliss, but knowing my luck it’ll be a fluke and I’ll be back to my grouchy self tomorrow

 

[xbxbx]

Hi xbxbx. I'm so sorry you are struggling like this. I too feel like the "numbers" on your blood tests aren't taken overly seriously and even if you do have symptoms they need to be severe. I've been on medication for mine for 10 years now and repeatedly get told my numbers are borderline (they've have been changing over recent years, dr has admitted this) - I still have the dry skin and hair I had when I was originally told I had hypothyroidism and my weight although under control is higher than it ordinarily would have been. Despite this, I've repeatedly been told my doctor won't budge my medication unless I decide I want to get pregnant - then he says we'd need to do a more thorough review. I too would love referral to a specialist. My mother sees the endocrinologist regularly for hers (although her issues are hyper rather than hypo) and has had much more in depth discussions around her thyroid health.

Yes, I feel like the blood results should only be an indicator of what’s going on and they should be looking at the overall picture. Blood results say X, patient symptoms say Y, and then managing it from there. It seems like a lot of people don’t realise how debilitating it can actually be unless you have thyroid problems yourself. I have friends and colleagues that think it just means you’re a little bit tired and gain weight easily. I work for the NHS and I’m tempted to just head along to endo and speak to someone to see if its even worth asking for a referral.

I follow a girl on Tiktok who also has hypo and PCOS and manages it purely by changing her diet. She’s no longer on any medication for anything. I completely admire her dedication but it seems like such a huge lifestyle change as she watches every single she eats and drinks. Her account is heal.with.fifi if anyone is interested!