I feel the cold all the time but GPs can't seem to find an issue. I'm currently in a heated home with three jumpers and two pairs of socks on, plus a blanket!
GP did full blood tests, showing an overactive thyroid but all other tests within range (detailed below). I take 100mcg Levothyroxine a day and have just dropped down to 75mcg but have been feeling cold for a very long time. The only overactive symptoms I really get are fast bowel movements and thirst.
I am also perimenopausal, but those symptoms are under control (taking progesterone 12 days a month, three pumps oestrogel daily plus twice weekly vagifem).
I am at a loss as to what is making me so cold. I can get access to private healthcare and could see a specialist but not sure who can help?
TSH 0.13
Normal range: 0.30 to 4.20
T4 23.8
Normal range: 12.0 to 22.0
Ferritin 70 u/gl (mid range)
Vitamin B 577 ng/L (mid range)
Vitamin D 110 nmol (mid range)
My serum sodium was slightly low at 132 n/mol (lower normal range starts at 135 n/mol
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Kai_63
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Thanks, I've been on 100mcg for quite a while and it hadn't shown as overactive before (within NHS range at least), so I assumed my thyroid needs had changed since perimenopause began.
But no I haven't had T3 tested for a while. I had taken the GP at their word regarding being overactive but perhaps I can get T3 tested and then see an endochronologist to get a proper diagnosis.
Yep, you really need a full thyroid panel, your vits and min levels are good so not the issue, chances are if you've never been a good converter you really need to get some T3 sorted to warm you up 🤗
Thanks I've only just reduced but the cold feeling has been there for a long time. That said, the doctors always try to cut it quickly so I will reduce gradually myself.
Thank you. I do think I was overactive at that point though, as I was having fast bowel symptoms and thirst which I only get when my meds are too high.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
So you probably didn’t need to reduce dose Levo at all
NEVER agree to dose reduction without getting FULL thyroid and vitamin testing
Thank you. I can't get any GP to agree to a T3 test but will get them done myself this time (and make sure it's early morning/24 hrs). I was lucky to get the full vitamin test but even that took some persuading!
Supplements: Vit D (4000 iu daily as I have darker skin), ferrous sulphate 200mg, vit B and I take a multivitamin three times a week to top everything else up.
I'm not sure if I'm autoimmune though it was suggested I was on another thread as an endocronologist had identified a gluten intolerance (or at least a leaky gut, I don't get any gluten intolerance symptoms as such and still eat gluten).
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Most contain iodine not recommended when on levothyroxine
I'm not sure if I'm autoimmune though it was suggested I was on another thread as an endocronologist had identified a gluten intolerance (or at least a leaky gut, I don't get any gluten intolerance symptoms as such and still eat gluten).
So you may benefit from strictly gluten free diet
Suggest FULL thyroid including thyroid antibodies tested
Medichecks have 20% off if order before end of day tomorrow (Dec 31st) - code EARLY20
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
But as it improves symptoms for many, lots of members are gluten free
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you, I'll see how I go and the explore the gluten free and dairy free options. I suspect they would be helpful but I'm interested to see how much I can improve without going down those routes first.
Please get your cortisol tested at 9am as low sodium could indicate low cortisol. You vit d seems high to me-it can be damaging.Maybe try a good cod liver oil such as rositas to help with the cold feeling.
That's interesting as I have actually had a very stressful few years. Perimenipause also caused some morning anxiety but the meds have sorted that out. Will ask to get it checked.
My understanding was that 4000 iu a day was safe (and necessary due to darker skin). My vit D levels are mid range so I figured it was alright?
Didn't know about cod liver oil, will try thank you.
Just a thought: everybody I know who feels the cold suffers from poor circulation. They do not have thyroid issues. The only remedy is regular exercise to improve the circulation, and trying to be active most of the time/not sitting for long periods or even hardly at all.
Thank you, I guess, it's just that it's hard to have a normal life that way. I do exercise but I have an office job so I'm hoping there's a medical answer that can help in the meantime.
Another thought - have you been tested for food poisoning? Listeria produces loose fast bowel movements (not exactly diarrohea) but loose slimey stools not formed. It also causes excessive cold feelings and thirst. Try to observe times when you are feeling worst (very cold, thirst, joint pains) and whether you might have taken antacids or eaten cold smoked fish, undercooked eggs, milk going off. You might have an underlying infection which comes to the fore if the stomach acid is reduced by antacids.
I had a bout of listeria in 2017 and nobody in the world could provide a diagnosis. I knew it was a bug because I had eaten uncooked smoked salmon (a tiny bit) the night before and it had been frozen - which multiplies the germs. I drank at least five litres of fluid and could hardly get home the first day. I had been taking Omeprazole to reduce stomach acid as I had a stomach ulcer caused by h-pylori (another bug that is worth testing for). I was just advised to continue with the Omeprazole but whenever I did, I got a flare up. In temperatures of 28 deg C, I was wearing a thick jumper, cardigan, tights plus a long fleecy dressing gown and was shivering. It happened every time I took Omeprazole to reduce stomach acid. It eventually petered out, each successive episode was less, but it took five years without anti biotic treatment. If you do get a test for listeria, also ask for one for h-pylori and other bugs causing food poisoning. All these bugs make you feel very unwell. I have RA and the listeria caused joint pain, especially in the collar bone - every time!
Thank you. No I haven't been tested but the only times I have these issues seem to be when I've recently increased my medication, with no corresponding nausea or vomiting. I have travelled a lot and have a pretty tough digestive system (not to say it couldn't be a food poisoning issue in the UK of course). I also feel cold all the time, and have been for two years at least, summer or winter. I'll monitor symptoms if it happens again though.
I think the cold caused by Listeria is extreme but I suppose it depends on how severe the infection is. Definitely get a test for h-pylori if you have travelled a lot because half the population unknowlingly has it. You will almost certainly pick it up on a visit to Asia. If I were you, I would get a battery of food poisoning tests done - h-pylori (which can be serious as it causes stomach ulcers and stomach cancer), listeria, e-coli. I don't know all the names. H-pylori will show up on a blood, stool or breath test but I think the others are done by a stool test. That said, I am not confident of NHS testing. You could try yourself taking an antacid and see if your symptoms are any worse. I don't know if the medication you take affects stomach acid, which would worsen an existing infection - it does with h-pylori. I was taking some medication for rheumatoid arthritis and that made it worse - it aggravates a stomach ulcer. Food poisoning can last for months even after anti biotic treatment.
Most people I know with poor circulation are easily puffed when it comes to exercise, but I don't. My work uses a standing desk, I do over an hour of walking most days, and 1 1/2 hours of swimming.
That is to say I feel like I do enough exercise; in fact before my symptoms started I was obese and barely did anything.
I too recognise the plight of the OP, I'm wearing thermals, 2 shirts, 3 jumpers and a fleece, twin socks, a hat, and fingerless gloves too. 2024 will be my ninth year of suffering this. My GPs can't find an issue either.
If this was pain, I think it'd be taken more seriously, but since it's only feeling cold, it's completely dismissed. "Just use a hot water bottle!" yeah, I'll totally take one of those into the heated swimming pool - that'll stop me shivering.
People who have poor circulation tend to have furring of the arteries so if you were obese you may have this or if you have ever smoked. It causes angina which in turn makes people feel the cold. I would have expected a GP to have considered this and to have done appropriate heart tests. I really do not know what else causes such coldness. An hour a day walking is not very much - for decades I walked at least ten miles a day, plus dancing for four hours+ some evenings. I did the gym but I am not a good swimmer so that was only 30 mins after the gym or an hour on its own. I don't feel the cold.
I'm not suggesting I'm an athlete, but how many people do less and don't feel the cold like this? I've had people suggest I walk on a treadmill all day for the exercise warmth. It grinds my gears.
I've never smoked. The doctors didn't say anything about angina or furred arteries, but when I mentioned my weight to one she just seemed happy I was no longer fat.
If it were me, I would ask for an angiogram to detect atheroschlerosis plus an MRI, even if I had to pay for them. It is possible to get an MRI done without a referral for about £200/£300. I knew a lady who was 22 stone for a long time and always overweight. She managed to reduce to under 14 stone (5ft 10ins) by dieting and was aiming at 12 stone by dieting but not much exercise. She had various symptoms which she pestered the GP about, who totally ignored her. Two years ago she had a massive fatal heart attack caused by undiagnosed angina. The post mortem said her arteries and heart were fully clogged up. Dieting reduces fat under the skin but it does not touch visceral fat which gathers in the arteries and round the organs. It is fair to say that anybody who has been overweight a long time (years) but especially obese will have high levels of visceral fat and furred arteries. I really do not feel that an hour's walk a day would do anything to relieve this - regular vigorous exercise is needed.
You could try looking round the health shop to see if they have any suitable supplements or try Chinese medicine for symptomatic relief from the cold. I have used it in the past and found it wonderful.
If it were me, I don't think I would persist with an NHS GP because they clearly are not willing to do anything and you are just wasting your time. They are strongly guided by, or dictated to, by NICE and the NHS is full of prioritization.
I don't know what else to suggest but wish you luck. I know how frustrating it is. I have had various health problems which did not qualify for NHS treatment and were dismissed out of hand. I had to find my own cures but it is not something people ought to have to do when medical practitioners are supposed to be experts who should help them. The lady I mentioned was a virologist and her husband was a professor in lung cancer research. Given she had only recently been to the GP complaining about obvious heart and angina problems, it was a clear case of medical negligence so it is best to find your own solution.
Hi Colderthanice2. I totally identify with you. I am invariably freezing and wear multiple. I am around 8 stone and 5ft 3. I have a fairly complicated thyroid as detailed on my profile. My blood pressure is especially low but doctors seem unperturbed saying that this is my normal.
I had hoped to see an improvement on T3 (currently 75 Levo and 20 Thybon Henning split am and pm. Alas there has been no change to date.
If you ever find the secret to improvement please do let me know.
Further to my earlier post, another possible cause occurred to me. If you are of child-bearing age, endometriosis could be a cause. It causes coldness for two reasons:
a) ectopic stale blood is reabsorbed into the body by most women (thus preventing the creation of blood cysts or hardened stale ectopic menstrual blood)
b) during the second half of the menstrual cycle, severe constipation can be caused by ectopic menstrual blood cysts causing blockages in the bowel. Thus, it is not possible to defecate for two weeks and this causes coldness/low temperature in the body.
Exactly this. We're not taken seriously. I hope they manage to help you somehow. I think we have to be persistent because there's a difference between someone being a little colder than the average person and having to wear so many layers of clothing all the time that you can barely get a coat on top!
I don't have any issues with exercising as such, so not sure if circulation is so much of an issue for me.
Thank you, that's exactly right about the coat. I hope they help us too. I reached a dead end in 2019 when they said they didn't know what's wrong and can't help. I've been grasping at straws trying to find something to fix this ever since.
Yes I imagine everyone's different. It's not just gluten free bread, I know gluten turns up in all kinds of places you don't even expect, like certain soy sauce, so while I'm open to cutting it out, I'd prefer not unless I really have to.
I have found that my low carb diet contributed greatly to low body temperature and feeling so cold all the time. The addition of healthy organic complex carbs has really helped me. So many of us go low carb for weight control which may not be an issue for you but thought I would just offer that small piece of advice
Thank you. I don't really restrict carbs as my weight isn't too bad (although with perimenopause I expect I will have to watch my weight more). I'll keep an eye on diet though.
Your fast bowel and thirst could be for other reasons. I had both, while I had very low T3 from central hypo (and probably bad conversion to T3 too).
Fast bowel was from microscopic colitis (diagnosed by colonoscopy 2 years later) and thirst from diabetes insipidus (NOT mellitis), which is probably related to my central hypo - both caused by a lack of pituitary hormones (TSH/ anti-diuretic hormone).
I'm in the US with Kaiser, but paid out of pocket for T3 testing, or would not have been treated. For the DI, I finally figured it out myself (most people don't have to get up every 3 hours to pee, with never a good night's sleep), and measured my nightime urine to establish it was not just an irritable bladder, then got my endo to test me.
Thank you, I should say those symptoms have happened a couple of times where I'd increased doses, and stopped again soon after decreasing. They've always followed tbe pattern of my medication basically.
I'll get T3 and other levels tested by an endo anyway and hopefully they can help me.
my TSH has been 0.1 and lower for over 20 years. I am NOT, despite one doctor’s decision, over medicated and when I did obligingly drop my dosage I had a small stroke which I think is linked. Thanks to endo I am now on a tiny addition of T3 along with 100mcg. Most importantly all my hypo symptoms have gone …hair no longer falls out, toes no longer like blocks of ice etc. (still get cold and wear many layers but usually exercise is what I need) I also take extra 25 tab once or twice a week.
You must have T3 and T4 measured. ‘They’ stopped doing this a few years ago. Must be a cost cutting exercise but TSH doesn’t work for many poor converters/ older/menapausal people as bar set probably using TSH range of ‘normal’ younger healthier bods.
Go back on your 100 mcg as soon as you’ve had your Medichecks or whatever test if no other option. Good luck.
(My lovely doctor, who used to ask how I felt, has just retired but luckily I have another, along with hospital endo to fight my corner. We all need someone in our corner especially when becoming hypo which can fog your brain!)
Thank you, the symptoms you've described are the same as mine (hair, toes like ice) etc! And interesting to hear about the bar being set via younger bodies given I'm now both in my mid 40s and perimenopausal.I'm glad you're getting the help you need and hopefully I can too. I'm fortunate to be able to pay for a private appt if the worst comes to the worst.
I found a cure for being cold is to push a vacume. I am not trying to make a funny or be disrespectful. 50 years ago grandma gave me this advice. As usual, she was right. Another is also get out and walk. Of course you want to optimize labs. This is a given.
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