Bit of an odd one, I wondered if anyone with Hypothyroidism feels cold all the time?
I've read that it's a symptom and I'm still waiting to see my GP for a diagnosis, so I'm experiencing all these awful symptoms and this has to be one of the most frustrating feelings ever!
I am shivering constantly despite having the heating on, layers of clothes on, and I'm certainly not skinny or underweight!
Just to make things worse I'm on anxiety medication that makes me sweat while I sleep so I'm waking up during the night shivering and soaked in sweat 😭
I'm at my wit's end!
Hoping I'm not alone and someone tells me it gets better once I'm on medication maybe....
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Mummybear0213
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Yes - cold even when you know full well that you shouldn't be cold.
And a cold that doesn't stop at your skin but goes right through affecting every organ. And continues even when you have gone into a positively warm, even hot room. Your inside can continue to feel cold.
I can write that from experience - and my own thyroid levels were not that different to yours at diagnosis.
Goodness knows how bad it feels for those who are worse.
I was very overt by the time I was diagnosed and I was so cold it felt like I was in the artic it was unbearable, the day I took my first measly 25mcg of Levothyroxine I had a full outdoor wiInter set of clothes on layer upon later upon layer, a huge 13.5 tog feather duvet and furry throws on that and two whippets on top of me, the central heating was on full it must have been at least 35 degrees. and I I was in that bed and thought god im going to freeze to death, in fact I prayed to die and really thought id had it it was so dreadfully excruciating . I remember hoping the dogs would have the good sense to eat me if I died! I was amazed to wake up the next morning feeling just a little warmer but still very very cold. I have never known anything like it - truly terrifying. I was cold for decades which was thyroid related . Only NDT properly warmed me up.
It was a regular occurrence, during winter especially, to need to shower or have a bath after spending time outside because I simply couldn't warm up otherwise.
I'm on 100mg Sertraline. Since my Cat 1 emergency c-section in December I've had crippling anxiety. I'm feeling a lot better on it but the night sweats I do not enjoy.
I had an emergency C-section but category 2 and that was scary enough. A Cat 1 must have been terrifying. Have you been able to process that? It's brutal going through that as a stand alone event but then having a newborn (and older kids) to care for is massive.
Is there a Birth Reflections team in your hospital?
The write up for mine says: "Birth Reflections is a confidential midwife-run service that provides women and birth partners the opportunity to talk about their birth experiences; to ask any questions they have about what happened; to share feelings and reflect on their overall birth experience."
It might be useful? ♥️
But also, don't forget the physiological impacts. Chances are you lost a lot of blood - this will decimate your vitamin levels. Ferritin especially. Have you had them checked recently?
Yes I had a birth debrief a few months after to try and wrap my head around it all. Tbh it made me feel worse 🤦🏻♀️
I'll try not to bore you with my whole life story but basically with my 3rd she had an unstable lie at the end of my pregnancy, which means she wasn't staying in the optimal position for a natural birth. So they manually turned her, induced me and she was born naturally although assisted.
4th baby also had an unstable lie. I knew it, I was carrying her after all! I could feel her movements all over the place close to delivery time so they agreed to induce me as long as she was head down. They assumed she was - refused to scan me. I then spent 4 days in slow labour having being induced, only for full on labour to start and then they realised she was breech and her heart rate was dipping. So I was rushed into theatre, lost almost 4 litres of blood during the op and almost died. Took them 30 mins to get a blood transfusion, I ended up needing 3 and spending time in the high dependency unit.
Took a long time to recover, some days I still feel like I am! I self referred for CBT but gave it up in the end because it wasn't helping. Writing things down helps sometimes (explains why I'm waffling on here 🙈).
Someone on here shared a link to a condition that could possibly be the reason I'm having problems now that relate to the huge blood loss I had.
I wish they would bloody listen to us! The arrogance is shocking - that they know best. I mean, a quick scan wouldn't have cost much but I bet your recovery care did. Being dismissed like that is frustrating at the best of times but with such enormous consequences, it's negligence.
CBT won't help if it's not an emotional cause or learned habit for your anxiety. I wish they understood that. I expect you're anxious for the same reasons I was; your body is screaming at you that something is wrong.
Yes, Sheehans syndrome would make a lot of sense. Do you have anyone who can advocate for you? Mum? Partner? Friend? What would help is having someone else who is as genned up on sheehans and thyroid and vitamins to help argue your case to the medics.
Edit: have a look into Inositol. I haven't tried it but it apparently helps with depression and OCD. (OCD is a panic disorder so in theory it should help with any anxiety issues.)
I don't have anyone unfortunately, I'm just doing my own research and hoping I'll get a GP who knows this stuff when I eventually do get an appointment 🙄 it's never the same gp at my surgery.
There's a rare ( at least allegedly) condition called Sheehan's syndrome where the front of the pituitary gets damaged if excessive blood is lost during or just after childbirth. I believe this might explain my hypothyroid. Its rarer now in developed countries but still common in the third world.
I had a stillbirth due to pre eclampsia in my first pregnancy so when I was pregnant again I was high risk, as it can occur in subsequent pregnancies. I was part of a clinical trial looking at low dose aspirin to prevent pre eclampsia. I took it throughout my pregnancy. My son was predicted to be large for dates and I was induced.
To cut a long story short he got stuck due to shoulder dystocia and I ended up needing a ventouse delivery. He was very big, over 10Ibs at 38 weeks and due to the large placenta site I lost a lot of blood very quickly. Being on a blood thinner obviously didnt help. I had to go on a drip and then had another massive haemhorrage due to retained placenta 4 weeks later.
One of the giveaways for Sheehan's is it affects milk production due to damage to the pituitary which controls prolactin, and despite desperately wanting to breastfeed my son I never got any milk at all.
I've never been diagnosed, just told that any lack of hormones can just be replaced with medication but I do believe my experience might have led to my developing hypo as mine doesnt appear to be autoimmune.
My son is now 30 and I got diagnosed ( eventually) 3 years ago. However my TSH has been high for years and I've certainly had hypo symptoms for decades so who knows? These things can take years to show up.
I'm sorry you went through that, it must have been so difficult 😔
I wonder if you had undiagnosed gestational diabetes, hence the big baby?
My 3rd was also a ventouse delivery. Had the hormone drip but she didn't like that and needed out ASAP. Now I'm due to have surgery from the damage from that 😩🙈
Safe to say I'm done having anymore kids! My body wouldn't handle another.
I think I just make them big lol. My husband is 6ft 3", my dad was 6ft 4". Son number 3 was over 9Ibs at 38 weeks as well. Both my sons are well over 6ft.
I agree, I shut up the baby shop after my last son was born. Too much to go through again, I was too unlucky with all the complications I had to contemplate doing it again.
To me, as an outsider, it looks like much CPD has been hijacked by corporate interests.
For example, and this is made up but based on my perception, there is more likely to a unit of study on prescribing statins, than on thyroid. Not necessarily anything wrong in companies helping to fund study. But when they set the syllabus, the agenda, other things will get squeezed out or just not funded.
Correct medication should relieve both cold and anxiety...so hang on in there!
I felt cold to my core when undermedicated it's a very strange feeling. I wore layers of clothes and slept in a fleece for a while
TSH: 4.42mu/L (0.27-4.2mu/L)
FT4: 11.6 pmol/L (12-22pmol/L)
FT3: 4.1 pmol/L (3.1-6.8 pmol/L)
TPO antibodies 170 IU/mL
You posted the above results a few days ago...these results are a red flag for hypothyroidism. Normal is not a diagnosis! Your GP means these results sit within the lab's reference range....and he doesn't understand how that works!
We aim to find the point within the range where symptoms are resolved.....not just to be somewhere in the range!
When medicated with levo TSH result should be 1 or under....if not medicated, then 2 or under
Your FT4 is miserably low and indicates you need replacement thyroid hormone/ levothyroxine
Your FT3 is only marginally better but suggests your thyroid is failing and is trying to ramp up T3 production to keep you functioning.
You need levothyroxine!
Your GP should prescribe a starter dose of 50mcg levo daily which you must maintain until your next test 6/8 weeks later. Most likely you will need a further 25mcg....wait and test as before. The results will then point the way forward....you may need a further increase. You should slowly begin to feel better
Antibodies are high suggesting thyroid autoimmune disease...a gluten free diet helps many, otherwise treatment is still levo.
Also vital is that you optimise vit D, vit B12, folate and ferritin to support thyroid function
In your shoes I would not want to take Sertraline...it can be difficult to come off it.
Years ago a GP gave me Sertraline because she thought I had fibromyalgia...I had/have hypothyroidism!! it took me some time to titrate off it
Unfortunately there is no quick fix so you need to be patient. You will need medication for life
Your GP should understand, but if they don't educate them... and push for medicaion to be initiated. They are supposed to make you feel well...and are failing on that count
Long rant which hopefully helps reassure you that there is a solution.
We're all here to help - and all have experienced various forms of thyroid disease and treatment - so just ask
This is incredibly helpful info thank you so much.
Funny you say that about Fibro, I went to the GP wondering if that was a possibility because I seem to have all the symptoms which is why I had my bloods done in the first place, to find that actually it's my thyroid that's the issue. The symptoms seem to be very similar.
Silly question, when I do start taking Levothyroxine would that help the anxiety go as well eventually? I obviously don't want to be stuck on anti-depressants for years (I was very reluctant to even give them a go seeing my mum rely so heavily on medication all my childhood) but they are really helping with the anxiety, I'm not the miserable shouty crazy woman I was a few months ago!
I had severe OCD for years. Now that I am optimally treated I no longer have OCD and I never feel anxious. Nervous, uncomfortable, worried, yes. but never anxious. Not in that vague, feeling-like-something-dreadful-is-going-to-happen-any-second sort of way.
The impact of undertreated hypothyroidism on metal health is wildly underestimated. I was very very unwell and now I'm not. Nothing has changed in my life outside of being properly treated. I take no other medications, my lifestyle is exactly the same, my diet and exercise hasn't changed...
It's good that you feel better with the antidepressant but see it as a temporary crutch..... it's theresult of a health issue ( hypothyroidism) not the cause of your ill health. The cause is most likely the lack of cellular T3/ hypothyroidism
The entire body depends on T3 for wellbeing. For good health every cell in the body needs to be flooded with T3 which needs to be available in an adequate and constant supply. Your FT3 is miserably low!
For most people Levothyroxine/ T4 Is converted in various tissues in the body into T3...so you need enough levo to achieve this.
(As an aside...Some people have impaired conversion....that's usually when patients need to add some T3. A low cohort, like me, need T3-only to function. We are all different and with the right help and treatment this can all be dealt with.)
So...I'd be very surprised if the anxiety didn't go once you are optimally medicated....it's a text book symptom of hypothyroidism! Then, you should be able to down- titrate the antidepressant....and feel better.
I am only a year into autoimmune underactive thyroid. I was mostly better after a few months. I am fine now.Within a few weeks of levo tablets I remember my legs feeling warm again in bed. It was great.
Night sweats may be your thyroid glands giving up a firing out a high dose at times .
I found this forum scary as say 10% of thyroid sufferers really struggle .The admin team are superb.
My Mum had 3 children by 21 and was on Valium in the 60s and hated the doctor for it. She is underactive and gluten intolerant too.
I am a 50 odd year old bloke and was a crying, cold tired wreck until levo kicked in.
My TSH was 78 I think.
Vitamin D and B12 and folate
. Get them tested. Let the wise heads on here guide you.
I did not show positive for celiac / gluten on bloods but it wipes me out for a week and I am intolerant of it.
Oh, yes, I remember the days of sleeping under two 13 tog quilts, with a large dog. And feeling , when I sometimes managed a holiday to warmer places, that I was being warmed through to my bones. Be a demanding patient -you know when you are not right. Hope you feel better soon.
Yep, I even started to suffer from chilblains in the summer! I have bad raynaud’s which I’m told is linked to auto-immune conditions. Do you get raynaud’s at all? I’ve noticed I’m not feeling as cold or having as many raynaud’s flare ups since starting levothyroxine. My chilblains are gone, but unfortunately my occasional night sweats are still a thing, but reviewing dose next week. I think if you start meds you’ll notice an improvement like I have.
I've suffered with Raynaud's for years! Went to the GP about it a long time ago and they were utterly clueless so I just went off what I read online. Winter time comes and it's like my toes want to fall off and die 😭
Oh no it’s horrible isn’t it? Have you had a thyroid antibody test done? Mine showed high antibodies so I’ve had a diagnosis of ‘presumed’ Hashimoto’s disease, which I’m told is linked to raynauld’s. You can get some special raynauld’s gloves online that are pretty good for working in or going outdoors, they leave the finger tips exposed so you can still type on a keyboard etc easily. They also do special socks now too, they definitely help!
That’s likely to be Hashi’s then if you’ve also got raised TSH levels. Do you know what those are? I’ve also started taking a full range of b complex, vitamin D and B12 and folate which has been making a difference. My vitamin levels weren’t fantastic which others on this forum advised it because people with Hashi’s struggle to absorb the nutrients in their guts, worth a look through some of the posts on here about Hashi’s. I’ve been learning a lot.
She has Bipolar. I haven't spoke to her in over 10 years so irrelevant really. I can imagine she has a lot of health issues these days the amount of drugs (prescription and otherwise!) she took over those years...
I'm having the same problem with my cats, trying to keep the warm in for my poor old hypo legs. They will be fast asleep, but as soon as the living room door closes, they need to get out NOW and scratch it to buggery. Then come straight back in. Rinse and repeat. 🙄
Low body temperature is one of my own indicators that I'm undermedicated (am on NDT). I remember after getting back on NDT after years of supply problems, I got to a dose where I felt comfortable in myself, and my then partner told me I was warm to the touch which was something he'd never known with me. So keep an eye on your body temperature. Before blood tests, waking body temp was a useful data point for diagnosis.
Thyroid is the hormone that regulates metabolism… ie the process by which our bodies get energy. Without it metabolism slows down and we can’t heat ourselves. (Also why some of us gain weight.)
In my house the thermostat feels like the Global Climate Accords between my husband and me. Me in all my layers (“I’m sick and I literally can not fit another layer on”) and him in his shorts (“If I take anything else off I’ll be naked!”)
The better treated I get, the less layers I wear.
Also- as you note, in retrospect you may begin to see all your random seemingly unrelated symptoms were all thyroid related after all. Root cause analysis at its finest!
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