I am so cold all the time, does my thyroxine need adjusting?
At last my test results, looks like all is well?
So cold: I am so cold all the time, does my... - Thyroid UK
So cold
Written by
Tikaneko
To view profiles and participate in discussions please or .
Read more about...
27 Replies
•
SeasideSusieRemembering
Tikaneko
I am sitting in my lounge, temperature is 22.5C. (heating is on), with a long sleeved cotton top, fleece body warmer plus thick chunky cardigan. Temperature outside is 14C. I'm just about warm enough but my legs are cold despite wearing trousers. This is about normal for me and my hypothyroidism and I'm probably optimally medicated.
What are your current test results, with reference ranges?
Hello SeasideSusie, your reply made me feel “thank goodness I am not alone” my latest test is due now but unfortunately due to COVID my Doc is not doing what they say are routine things. So I am not going mad take care D xxx
That sounds rather like me! My husband is often shocked at how cold my hands are. I can remember in my twenties that my hands were always freezing, even on a hot summer's day, and that was long before diagnosis.
SlowDragonAdministrator
How much levothyroxine are you currently taking?
Do you always get same brand of levothyroxine
When were thyroid and vitamin levels last tested
What vitamin supplements are you currently taking
Do you have Hashimoto’s, if yes ...are you on strictly gluten free diet?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid testing too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Add any results you have already
Or come back with new post once you get results
Hi SlowDragon, thank you for this info. I am currently on 75mg have been for years. I do make sure I get the same brand, my GP kindly wrote it on my notes for the pharmacist, my last test was about year ago, I am due one but GP wont do them at this present time! I am currently not taking anything else although going to start VB12. I haven’t been diagnosed with hashimotos but do follow a good diet but not strictly gluten free only partially. NHS only do certain tests, they don’t think we need them all. Is it worth me having a private test done? If so how do I go about that and what do I ask for? Thank you D xx
Very many of us have ONLY made progress by getting FULL Thyroid and vitamin testing
You need to know if you have Hashimoto’s
Essential to test TSH, Ft4 and Ft3
Just testing TSH is completely inadequate
Low vitamins are EXTREMELY common.
DIY finger prick test kit available
Most important results are Ft3 followed by Ft4. TSH is frequently well under one, when adequately treated
Recommend you don’t take any B vitamins until you get tested FIRST
B12 supplements take 4-6 months to get out of your system
Testing BEFORE starting on any B12 strongly recommended
I have just found the following on my GP
Serum TSH level (XaELV) 1.6 miu/L [0.27 - 4.2]
Aim for TSH towards the bottom of the reference range for T4
replacement in primary hypothyroidism, targeting to around
1.0mU/L for symptomatic patients.
Advice on requesting and interpreting TFTs on Lab Med website
Refer to tinyurl.com/BiochemInfo for further information Information
Not sure what it means!
Only the TSH was tested - which does not give you enough information regarding thyroid output. As it states - on treatment a TSH of 1 is preferred - yours is 1.6. So you need to know how much hormone your thyroid is producing - T4 - and if it is converting into T3.
T4 is inactive and T3 is needed in every cell of your body.
Just testing TSH is completely inadequate
Tips on how to don
DIY finger prick test
healthunlocked.com/thyroidu...
This is all so eye opening, I had been diagnosed with Fybro a number of years ago, so it the diagnosis wrong? I am also very tired as well as cold! I will absolutely definitely get a test done. I will look out for tomorrow’s offer. Will it be on that site? Thank you so so much for the support, I will feel well sometime soon.
Fibromyalgia is often under medicated hypothyroidism
(Or undiagnosed hypothyroid)
Being under medicated leads to low vitamin levels
Low vitamin levels leads to low TSH
If all GP tests is TSH ...you can see the problem
Essential to test FULL Thyroid and vitamins to make progress
Also very important to test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Few links about fibromyalgia
healthrising.org/blog/2019/...
thyroiduk.org/tuk/research/...
stopthethyroidmadness.com/f...
prohealth.com/library/new-t...
chriskresser.com/low-t3-syn...
Even if we frequently don’t start on full replacement dose, ......most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical
hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
SlowDragon , do you happen to know why the folate is no longer included in the Thyroid Check UltraVit test, and now only available by blood draw? I've only just noticed this as I went to order😳 x
They have been having lots of DIY tests where folate couldn’t be processed ....so just changed very recently....
Ah ok...thank you. Drat! That's annoying☹️ x
This seems to be a symptom of hypothyroidism. Yes im sure you would be very wise to get your levels checked. Maybe your poor system is running low and not getting enough energy to warm you. So hope you get good support and a blood test sorted.
I know this sounds ridiculous but I am getting excited about having a full blood test done. I have also noticed that another symptom is Lactose intolerance, I was diagnosed about 6 months ago. It is amazing that all these symptoms can be connected, why don’t the NHS test for it all particularly when someone is showing other signs?
It doesn't sound ridiculous at all...you're right to be excited, because the results and the sage advice from kind members on here will change your life, as it did mine👍I suffered for decades at the hands of assorted Drs and hospital 'specialists' with 'ME/CFS and fibromyalgia' until I found this forum.
I was on a very high dose of levothyroxine that did nothing to combat my hypothyroidism, and I needed T3, which they refused to prescribe, despite my very poor state. I also found that my vitamin levels were dangerously low, yet they had deemed them 'fine'...I was horrified when I read through my medical notes! I had a vit D level of 4, and a severe B12 and folate deficiency that had caused serious tremours, and left me very debilitated. I actually thought my GP of 20 years was trying to help me!😳 There are many stories like mine on here, because Drs nowadays seem to be more interested in keeping pharmaceutical companies happy, rather than their patients healthy...there's no money in a healthy patient☹️
I no longer bother with the GP, as I have lost all faith in them, and I buy my own thyroid meds, vitamins and minerals and have a Medichecks test every so often...it does cost money, but I have no choice if I want to stay healthy. I had given up all hope of recovery after being so ill for so long, but this forum has been an absolute life saver for me. I dread to think where I'd be without it. I hope you too will soon be well. Good luck🍀 x
Lactose intolerance is very common with Hashimoto's
Can be due to gluten intolerance.
You may find after 2-3 years on absolutely strictly gluten free diet that lactose intolerance improves
coeliac.org.uk/information-...
Once you are following a gluten free diet, the gut is able to heal and you will be able to digest lactose again. Therefore, lactose intolerance is usually temporary. Following a gluten free diet means that most people with coeliac disease do not develop lactose intolerance.
ncbi.nlm.nih.gov/pubmed/240...
Lactose intolerance was diagnosed in 75.9 % of the patients with HT
read.qxmd.com/read/24796930...
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
As you are lactose intolerant you will need lactose free levothyroxine
Teva and Aristo are the only lactose free tablets
I'm sorry your having to go through this . It's not fun . Do you have your latest lab results with your FT3 FT4 TSH ? You would also need labs with your Iron/ferritin, B-12/folate , vitamin "D"levels. What I found from my own experience is that when my FT4 was high I was always cold .
Wishing you fast resolutions .
SlowDragonAdministrator
Like Mamapea1 when I got access to my historic test results online I found my vitamin D had been EXTREMELY deficient at 12nmol ...yet I had never been told or prescribed
Low B vitamins often go hand in hand with low vitamin D
Getting vitamins tested and optimal by supplementing is essential
Only with help of this fantastic forum did I make progress.
Now correctly treated on levothyroxine and T3 on NHS prescription....after a hard fight
Yes, and thank goodness you stayed on here to help others, as your particular knowledge, advice and links were crucial to me achieving wellness...I am so grateful to many kind souls like you on this forum💕 I'm glad you won your fight with medics for your T3, but I fought a losing battle with my GP et al, especially as I discovered I had RTH...they would never have agreed to my T3 dose, their collective brain would have exploded💥 The important thing is that I have learnt so much about the thyroid and how to stay healthy in general, a rare gift to carry through life and pass onto others, for which I will be forever grateful🙏 x
Hopefully in the future I will be able to write a similar message. We are so lucky to have such wonderful support. D xx
Not what you're looking for?
You may also like...
Feel so cold
Hi,can anybody advise please i had my thyroid removed 2 yrs ago have struggled with dosage at...
I'm so cold
My heating is on, 23 °C but I'm freezing. Sat here with my coat on and hands like ice. Just falling...
I'm so cold all the time
I'm not diagnosed with hypothyroidism although my symptoms are consistent with secondary hypo and I...
So cold at bed time
Hello every one.i had my right thyroid removed 4 weeks ago due to a small cancerous nodule. I am...
So cold all the time
Does anyone else with Hashimotos/ Hypothyroidism here really struggle with the cold. I'm spending...
Cold
Soo cold!
Feeling cold
Abnormally cold! 
