Thyroid

[dinosaursideways]

Has anyone had radioactive iodine treatment? I’ve been hyper on & off for about 4 years , on & off carbimazole. I’d got it reduced to taking 5mg every other day & was hoping to be discharged at next appointment with endocrinology. In November I started feeling rough & thought I was peri menopausal but had a blood test last Monday & have been told to increase the carbimazole to 20mg a day & start propranolol too- and think about either RAI or surgery. I’ve always said I’d just carry on with the medication before but enoughs enough I’m having a permanent treatment this time.

I had surgery. I was told RAI wasn't an option because I was so young. I'm surprised they would consider leaving you on carbimazole long term, when I was on it I was told staying on it forever wasn't an option because of the risks/complications. I had a total thyroidectomy, if you have any questions about that.

 

[monga]

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?

My MIL had this done and she was fine apart from being hoarse from the general anaesthetic the wound didn’t bother her too much .

 

[Begborrowsteal]

I had postpartum thyroiditis that eventually settled.

Last few months ive been shattered/run down/mega stressed and my hair started falling out. More bloods done, vitamin D very low, b12 borderline low and iron borderline low. But also 'strange' thyroid levels. Showing its overactive (never lose weight tho! Lol). I need another blood test.

Ive had the palpitations etc. I had some very scary 'turns' recently. I googled and it sounded exactly like a focal seizure, i diagnosed myself as dying but seems it could be the thyroid!?

 

[ChampagneBox]

So sorry to hear that. Mine was papillary thyroid cancer, I don’t know the differences unfortunately. Do they believe they managed to remove it all?

Hmm not sure, but there’s doubt over whether I’ll need the other half of my thyroid out!

 

[lexle]

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

So sorry to hear that. Mine was papillary thyroid cancer, I don’t know the differences unfortunately. Do they believe they managed to remove it all?

 

[dinosaursideways]

So I’ve gone ‘back to basics’ with my thyroid meds after a discussion with my new GP and specialist nurse.

Long story short.. sort of. (I’m sure I’ve spoken about it at length previously), I have hypothyroidism and 75micrograms was my consistent meds for years but at my yearly blood test it showed that my meds needed to be upped so I was put on 100micrograms. I hated it, had horrendous side effects, was pretty much on a constant downward spiral until I made the decision to come off the meds completely. Terrible decision, I know, but my old GP was refusing to lower it back to 75micrograms and was telling me I just needed time to adjust (almost 9 months had passed at this point).

That GP practice closed down and I’m now somewhere new and between the GP, nurse and myself we’ve decided to ease myself back onto levothyroxine at 25micrograms for a week, then increasing to 50micrograms for a week and then 75micrograms for 1-3 months depending on how I feel and then going from there.

I’ve had hypothyroidism for over 15 years and have never really paid too much attention to it, I take my meds in the morning and get on with my day. However, after everything that’s happened this past year and how horrific I felt at some points I’m wondering if there’s anything I can do to help support my thyroid apart from taking my meds? As much as I love the internet it can be very confusing at times. Some sources say fibre can negatively affect the thyroid while other sources say to increase fibre, some sources say to eat all the leafy greens and others say to limit intake as they affect iodine consumption, some sources say avoid gluten but others say gluten has no affect on the thyroid..

My question is: aside from medication, have you added or removed anything from your diet or lifestyle to help support your thyroid and have noticed an improvement in how you feel? I’m not trying to lose weight or gain weight, just looking for an improvement in my overall health. I have PCOS too but thankfully that seems to be under control with the mini pill.

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.

 

[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?

 

[DownBelow21]

Thank you all for your replies - I really appreciate it.

Going to ring my doctors and try and get an appointment to check the chest 'pain' and periods checked out. The chest side of things literally feels like no pain but the only way I could describe it is like a 'ball of anxiety in my chest, making it feel heavy' but it's always there? I don't need to be walking or moving for it appear, I'm literally sat at my work laptop now and can feel it.

Will update you all when I've spoken to the drs xx

 

[elliebee27]

I just saw this thread - it's so timely, my doctor suspects I have an underactive thyroid. Going to have labs done (ugh, I hate needles), hope I can find answers as to what's going on with me!

 

[Vidyagaymes]

I also Got the antibody test when I was diagnosed… hashimotos here too… levothyroxine has pretty much removed all my symptoms apart from the cold and heat intolerance…

 

[Begborrowsteal]

Thyrotoxicosis potentially, or independently functioning nodules. If you are feeling flutters please talk to your GP about taking a small dose of aspirin per day. It's about 75mg and they sell them in Asda, Boots etc so you don't need to pay for a prescription of they do prescribe it.

I take 40mg propanolol as and when I need it usually, so they'd likely just tell me to take that anyway. But i'll see what the GP says, and what the next test results say!

 

[monga]

Yeah, 100mg levothyroxine. It's low at the moment but was high the time before and just seems to swings like a bloody seesaw.

It's a nightmare trying to get the dosage right .I had to have block and replace at one time as it wasn't for settling at all .

 

[lexle]

Hmm not sure, but there’s doubt over whether I’ll need the other half of my thyroid out!

Hopefully you won’t Wishing you well

 

[hettywainthroppp]

Thank you and thanks for replying to me, I don’t feel like I’m going so crazy now . Maybe I will ask to be referred back to endo to see someone regularly like you are, GPs don’t seem to be very sympathetic with thyroid issues and blood results x

 

[mcfeez]

Hi, if you don’t mind me asking, How did you manage to get your weight back under control?
I’ve cut out junk food, only eat lean meat, fruits and vegetables and I’ve lost 5lb in two months. It’s soul destroying
Even with medication my body isn’t the same as it was before, I totally agree with you. My energy levels some days are non existent, other days absolutely full of energy.
I’ve got the legs of a 70 year old though, aching every night like I’ve run a marathon

So I gained weight due to thyroid and then developed mental health issues not long after, due to the thyroid and other life stuff going on so I lost a lot of motivation initially.

Then once I got that more under control I started calorie counting, upped my exercise routine (I walk a lot and gym a few times a week) and that was it really and it worked for me. Very slowly compared to how I've lost weight in the past but I got down from around a UK size 18/20 to a 10/12. Its such a miserable feeling essentially knowing your body is a constant fight with you.

 

[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

 

[Sozhun]

Hoping for a bit of advice before I start googling and driving myself insane.
My 13yr old daughter had some blood tests and when I rung for results the GP receptionist said that “there’s an issue with her thyroid and that she’s anaemic” and that we need to book an appointment to see the GP. I can see in the app the results and free T4 was 10.7 and her TSH was 2.8. Her HB and Ferritin are also low - HB 107 and Ferritin 2.

The anemia isn’t really anything new although it’s definitely worse than it was but the thyroid thing is what’s throwing me off. Does anyone have any suggestions what those results could mean as well not be able to get an appointment for a day or 2

 

[heresmycode10]

I can only speak for me but I tend to fluctuate and end up hypo on and off . I was hyper and put on neomercazole high dose and as it improved went lower dose. Regulated for while but went hypo and they increased it again to bring it back up. Will stabilize for a while and dose gets lowered slightly. Be going great for ages and then go hypo again. I will say I had a thyroid storm five years ago and it damaged my heart etc and am on other meds so that could be part of why I fluctuate.

That’s really useful, thanks. The overactive phase was really scary for me heart-wise and sounds similar with the trembling and heart rate through the roof etc. - sorry that it caused you damage (I’m thinking I should get this checked now).
God, I hadn’t realised the thyroid journey was so tough until it all started last year. I find the Endo/GP is so reluctant to increase meds even if I’m literally at the bottom of the nhs ”norm” and symptomatic.

If anyone has any tips to increase t4 levels using alternative methods (herbs etc.) then please let me know. I take selenium. Thank you

 

[Beth1980]

Thank you for your reply it means so much. I know last year and this I should have gone back and again stood my ground/ spoke up for myself and your reply has reinforced that. Guess I have to be strong and know my knowledge maybe better than theirs.

 

[barmcake]

Mine have been all over the place for years from the highest end of the scale I'm now right under, my last readings were T4=14.6 TSH 5.53 apparently it's been a big drop from my usual readings ( I'm hyperthyroid) have to get bloods done every 6 weeks until they decide what to do .I dropped after my covid vaccine they're waiting to see if it comes up again so I'll have to stick the cold for longer


It's rare how much the thyroid can affect you. I never even gave it a second thought before it went wonky there's so many symptoms from it from diarrhea to shakes and everything in between .Hope you get it sorted soon it's such a horrible feeling .

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.