Feeling cold is a pretty reliable sign for me that my dose needs raising. GP just dropped me from 100 to 75mcg level because TSH is suppressed. My question is: is the sensation of cold a subjective thing i.e. I FEEL cold, or is it an actual temperature drop? I just took my temp and is was 35.8°C. I do run cold but that sounds like I've been in the fridge all night. Or maybe the thermometer battery needs changing...
Any ideas? Ta in advance.
Should have added it's an under the tongue thermometer.
Never ever agree to dose reduction based just on TSH
If Ft3 is NOT over range you are not over medicated
Do you always get same brand of levothyroxine
Which brand of levothyroxine are you currently taking?
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 FULL thyroid
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)
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 antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
I have a blood test on the 28th Jan. I've never had a T3 test but after I told the GP I would book a private one if she couldn't do it, she said she'd have a word with the practice manager and try and get me one. She said GPS "have to" reduce levo if TSH, the only thing they usually test, is suppressed (my last 3 tests have come back 0.05).
Extremely important to regularly retest vitamin levels
If vitamin levels aren’t OPTIMAL TSH tends to drop
Low vitamin levels are extremely common on just levothyroxine, especially as we get older
What vitamin supplements are you currently taking
Remember to stop taking any supplements that contain biotin a week before ALL Blood Tests as biotin can falsely affect test results
Optimal vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Ferritin and Folate at least half way through range
Was tested once maybe - I remember VitD was zero. I'll ring my GP a week before the test and ask her to throw in the vit tests as well. I take a VitB and C fizzy supplement, magnesium and Vit D (all otc) every day.
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
Biotin is in vitamin B complex
Most thyroid patients need to organise annual vitamin testing themselves
Essential to maintain at OPTIMAL levels
She said GPS "have to" reduce levo if TSH, the only thing they usually test, is suppressed (my last 3 tests have come back 0.05).
.....' Cobblers'
I had TSH 0.05 for over a decade on NHS Levo .
I was eventually 'asked' to reduce Levo because of fT4 results steadily rising to about 200% of the range ie fT4 20.5 [7.9-14].
But that's different ....
NHS 'guidelines 'are just that ... guidelines. It is up to the individual Doctor what they are prepared to do with your dose, taking their knowledge of the patients individual history into account.
p.s ... the suggested reduction from125 to 100 left me constipated, and digestive system and brain 'asleep', so after doing blood test on 100mcg, I told them i understood the 'risks' of low TSH, and would be taking 112.5mcg whether they liked it or not.
Dr reluctantly agreed i could go back to 125 if i wanted, but i'm staying on 112.5 at the moment.
She said GPS "have to" reduce levo if TSH, the only thing they usually test, is suppressed (my last 3 tests have come back 0.05).
Did you ask her were it says that? That sounds like a bit of a cop-out, to me. As far as I know, doctors are always allowed to use their discression. I would want chapter and verse and internet links on that one, if it were me.
I'm holding fire until she comes up with the T3 test!
Quote the NICE Guidelines:
Thyroid disease: assessment and management
NICE guideline
Published: 20 November 2019
nice.org.uk/guidance/ng145 © NICE 2020.
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
I think you are absolutely right to question the differences/similarities between feeling cold and being cold (as in thermometer shows you are cold).
It is usually suggested that hypothyroidism does actually make you run at a lower than usual temperature. And in hyperthyroidism you actually run a bit higher.
You can have a blood temperature below "normal" body temperature yet not feel cold. However, once you do feel cold, it is a deep chill feeling that goes right through and can be difficult to overcome. Even when you you are warm, you can still feel cold.
It is, perhaps, easier to think about people with demonstrable high temperature, such as in a fever. They can go from being so hot they rip sheets and clothes off, to being freezing cold. Yet have an elevated blood temperature throughout.
I seem to lose heat quickly and find it hard to warm up. If I'm too warm I'm just too warm but cold hurts like pain. Breaks my husbands heart when he gets the central heating bill!
Test... testing
Blobby1234, I suggest you ask her, "What are you trying to treat? The lab report, or me?"
Hi. I don’t have a lot to add apart from I have had a body temperature of 35.5 in 2014 and had been cold for years prior. My husband called me the Ice Queen I was that cold. At that time my TSH was 4.0. Range 0.5 to 4.0. No action. Was told I was ok. In 2020 I have been diagnosed with Graves Disease and my body temperature is 36.6. It’s a huge change 1.1 degrees. Trust your gut. Challenged the coldness you are feeling.
This I love! But after 19 yrs she is the first (young) doctor who hasn't taken my (no-med-degree) questioning as some kind of threat. She was OK with my referring to this website and has said she'll try and access the tests.
This young doctor sounds good in that she is open minded to you getting information for yourself. You will need to see if that translates into her prescribing based on how you feel
A GP once made me reduce my levo from 100 to 75. Ruined several (more) months of my life. She then wanted me to change to 100 x 2 days and 75 x 5.I worked out I needed 100 x 5 days and 75 x 2
Don’t be bullied into doing what a doctor “thinks” is the right thing when they need to ask you how you feel on certain levels. Some people can cope with large dose changes, others (like me) cannot.
We are all different, I hope you sort things soon
feeling cold
Fed up feeling tired and cold
I hate feeling cold!
I feel the cold. 
