Hi
Does anyone else with hypothyroidism get purple lips? Often when I feel light headed and tired I look in the mirror and parts of my lips are purple. It usually happens around the edges of my lips and in the same spots. It is unrelated to when I’m cold. I’m wondering whether it’s a thyroid issue or something else.
My sister has Hypothyroidism she also has something called Cyanosis which means the Oxygen.in her blood is low . Perhaps it would be a good idea to contact your GP to ask for Blood Test. Good Luck
M🌹
Thanks M,That was my first thought too so I bought one of those little oxygen monitors and my O2 levels seem to be fine.
L
Welcome to the forum
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
When were thyroid and vitamin levels last tested
ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
On your profile you added silent reflux and omeprazole
Most hypothyroid patients have LOW stomach acid. This can cause similar symptoms to high stomach acid
Omeprazole (a PPI) is to treat high stomach acid
How long have you been on PPI
PPI tend to lower vitamin levels
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Please add most recent results and ranges if you have them
Thanks SlowDragon,
I only just discovered this board last week and it made me realise I need to take more responsibility for sorting out my treatment. I’ve been on 25mcg of Levo for 5 yrs which I now realise is a starter dose (although I definitely feel worse if I don’t take it for more than a few days). My GP TSH tests are usually around 5 or just under (top end of the range). I ordered an advanced thyroid function test from Medichecks at the weekend which has all the vitamins in it too. I will post again when I have results. The omeprazole brand switches between 2 different ones. Mercury and I don’t know what the other one is. I did wonder whether that could make a difference. I will start paying attention to any differences.
I’ve been taking 4000 IU vitamin D daily for 4 years since I found out I had osteopoenia after I broke my foot for no reason. Good news though -I just had my dexa scan results and the vit D seems to have stopped the bone loss getting any worse. Yay!
I have silent reflux which has been really bad lately (chest pain, nausea, sore throat) so the gp told me to take 40mg of omeprazole for 2 weeks to try and clear it. I have only taken it twice before - both times 20mg doses for 3-4 weeks. I will try to come off it at the end of this week. How do you know if you have low stomach acid rather than high?
After reading this forum I realise now that my thyroid could be causing the silent reflux and I’m determined to get the treatment right to fix the problem instead of the symptoms. The reflux got bad after I got taken to hospital in an ambulance 5 weeks ago with terrible abdominal pain. It took 4 weeks for my pelvic pain to improve. I think the reflux is my body’s stress reaction to that. I had an mri for my stomach pain last week so hopefully it’s nothing too serious.
I will wait to see what the blood tests say and take your advice to have them early before any medication. Thanks again for your help.
Good grief
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old or frail or heart condition)
Levothyroxine doesn’t top up failing thyroid, it replaces it, so it’s important to start on high enough dose and increase dose upwards as fast as tolerated
Unless extremely petite likely to need to be on at least 100mcg levothyroxine, but going to take several month and small increases to get there
It’s the brand of levothyroxine that’s often important
(not omeprazole)
Many people find different brands levothyroxine are not interchangeable
Having been left woefully under medicated for years it can be difficult to increase dose
May need to increase very slowly
Typically we increase in 25mcg dose steps
But you may need to increase more slowly
Eg 25mcg and 50mcg alternate days for 6-8 weeks, (so increase of 12.5mcg ) before increasing to 50mcg daily
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
On levothyroxine TSH should ALWAYS Be under 2
Most people when adequately treated will have TSH around or under one
Most important results are always Ft3 followed by Ft4
Likely to have very low vitamin levels having been left under medicated so long
When hypothyroid we frequently develop low stomach acid and this leads to poor nutrient absorption and low vitamin levels
Low vitamin levels tend to lower TSH
You probably won’t be able to do Medichecks test until New Year
Only test early Monday or Tuesday morning and then post back via tracked postal service
Suggest you make an appointment with different GP now and request 25mcg dose increase in levothyroxine …..even if you don’t start taking it until after blood test
Recommend wearing a Fitbit or equivalent to record resting heart rate, especially at night
Likely to have bradycardia if extremely under medicated. (Some people get very fast heart rate when very under medicated)
Do you know if you have had thyroid antibodies tested when originally diagnosed as hypothyroid?
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near 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.
Also here
cks.nice.org.uk/topics/hypo...
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.
BMJ also clear on dose required
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Graph showing TSH in healthy population
web.archive.org/web/2004060...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
This is SO helpful. Thank you.
I have only ever been tested for TSH - not T3 or T4 or antibodies. I’ve purchased a clinic visit for my Medichecks test as I had a failed finger prick test previously - couldn’t get enough blood out. I am expecting Hashimotos as I also have psoriasis.
I’m 61kg and 45 years old so it sounds like I should be on around 100 of levo! It is so frustrating that I need to know more about this common condition than my GPs! I see a different one each time. That’s probably part of the problem.
There’s almost 2 million people in U.K. on levothyroxine yet many GP’s just seem completely unaware of clear guidelines to get patients up on full replacement dose levothyroxine as fast as tolerated
90% of thyroid patients are female, might be different story if 90% were male
But male thyroid patients frequently experience same poor care
Tips on how to do DIY finger prick test
Make sure well hydrated day before
Exercise for 10-15 mins to get warm and blood pumping
Hand in hot water just before test
Stand up to do test
healthunlocked.com/thyroidu...
Only do test early Monday or Tuesday morning. Not when weather freezing /snowy
If not already registered for online medical records and test results…..get that organised
See if you have had vitamin levels and thyroid antibodies tested in past
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
I used to before when my blood pressure was extremely low
I’ve got a blood pressure machine. I’ll check. It tends to be worse just before bed.
Do you get migraines? They can cause weird stuff like that, even without a headache.
Ukie, thankfully I don’t get migraines. In fact I very rarely even get a slight headache. I feel v lucky in that regard as my poor daughter has had terrible migraines since she was 3 years old.
I do, but I've never thought about it being to do with my thyroid and to be honest I don't really worry about it. I remember my Granddad often had a purple tinge to his lips. I tend to notice mine when I'm cleaning my teeth at the end of the day.
If I get cold they are worse and after a sea swim event once, they were terrible for hours afterwards, but I believe I was hypothermic then.
Compared to many on here I am very tolerant of different brands of tablet and taking it with food makes no difference to me, but I do occasionally take omnaprazole and I do try and keep that away from my levothyroxine intake. I'm 52Kg and take 100micrograms.
It does sound like you might be under medicated reading the other posts, but how do you feel?
Your post made me chuckle as I have done exactly the same - making those strange shapes with my mouth to see how the colour changes!
I was feeling ok this time last year, but my silent reflux has been getting worse all year - even when I had a hugely restricted diet for 4 weeks. I’ve been wondering what’s causing it. Since I had terrible abdominal pain a month ago, I feel like I did when I was first diagnosed with hypothyroidism. Totally exhausted, tired muscles, pins and needles, achy back, weird tingly lips and light headed.
Hopefully the blood tests will give me a clear steer and I can sort out my medication.
Glad it made you smile ha ha! I shall have a look tonight to see how purple I am 🤣
It definitely sounds like a trip to the GP is in order - or telephone consultation as all this madness seems to be kicking off again. My TSH is usually less than 1 and is often flagged as too low but they ignore it, which I'm happy about.
I usually take omnaprazole due to having to take ibuprofen with a hip problem, although I try to avoid if possible. However I have gone through phases of indigestion. It's really strange because I have noticed that I rarely get indigestion these days whereas at one time it was frequent and I ended up having an endoscopy - thankfully okay. Perhaps it is because I make my own bread these days? There's a thought... as that is something that used to kick it off.
Hi, I have had the purple lips in the past. Now it is more of a numb sensation since being on more appropriate levels of thyroid meds.
I first noticed it when brushing my teeth like Ruby1 says. It seemed to be triggered by holding my mouth open, and in those funny positions brushing your teeth makes you pull lol.
When I first saw it it was like I'd been chewing on a biro! Like dark ink had spilled around the side of my mouth!! I went to wipe it away then realised it was under the skin.
I then experimented with what triggered it and it seemed certain positions of my mouth would cause a slight numb sensation then the inky colour would start. Like oxygen wasn't getting through to parts of my face properly.
I did an oxygen level test with one of those finger monitor thingies and like you found it was ok. I do get slightly low blood pressure and have had problems with borderline low circulation, all connected to thyroid levels (which no doctor picked up on despite many visits and specialists actions my life).
These days I feel more numbness (not cold, just numb) around my lips if I'm eating something like a boiled sweet something that holds my mouth in a funny position.
I've read about how with hypothyroidism we can get low oxygen levels in skin, causing skin problems, so this matches as well. We can also struggle to get enough oxygen to our brains even!
There's great advice been given here and I agree with what people have said. I was undiagnosed for 20 odd years so I know what it means to be undermedicated longterm.
Wishing you luck with your blood tests and finding a way to increase your meds xx
That sounds just like my experience except my lips are more tingly than numb. I wasn’t aware of the connection between hypothyroidism and low oxygen in skin, but maybe that’s why we get cold so easily. I wonder if that also is connected to why I get psoriasis. Thanks for the good luck wishes and taking the time to respond.
I get this too can’t say it’s related to hypothyroidism and being cold at least for me since it seems to comes and go.
Yes it comes and goes for me too. No rhyme or reason but I always know when it has come back as my lips feel weird and tingly and I feel a bit light headed.
Yes mine are always deep purple, it affects the shades of lipstick I can wear. I was told it is due to low oxygen levels in my blood, however when tested and on my smart watch mine are always at 99% which is normal.
That’s exactly the same as me. You can see the purple right through lippy! It’s good to know I’m not alone.
Lip biopsy 
Very dry chapped lips.
Swelling - lips and hands? 
Tingly mouth/chin/upper lip & neck
