Hi, I’m new to the world of under active thyroid and am desperate for help. I only take 20mg of levo thyroxine. However my question is I have enormous discomfort which sometime develops into pain in my neck- basically everywhere. Base of my skull round to the front. Its like my necks stiff and then every now and again it’ll become very painful. So much so I feel sick.
Thank you for any advice
Welcome to the forum.
It's possible the symptoms are because you are not optimally medicated. Do you have any recent blood results to share? And can you confirm the amount of levo you are currently taking - it is supplied in mcg (micrograms) - but 20 is an odd number when tablets are usually in fractions of 100 - ie multiples of 25.
Do you always have the same brand? - some people have strong reactions to a change in brand as the fillers can be different. Teva seems to cause the most problems (although some people really really like it, and it is one of only two brands that is lactose-free)
This is all new to me- I take 50mcg. I’ve checked. 🤦♀️. I need to check the make. Thank you for your help
OK so that's a starter dose. After 6 - 8 weeks you should re-test your bloods to see how much more (if any) medication you need - see SlowDragon below on exactly what testing you would ideally do. It's worth trying with your GP first, and saying this is the testing recommended by Thyroid UK - if s/he won't do everything, at the very least you want all the thyroid tests doing, not just TSH and free T4 - or treat yourself to a full set of testing at home. Then, start a new post with the results, and ranges (which vary from lab to lab) and the lovely people here can advise further.
Good luck x
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva and Aristo are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Welcome to the forum
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
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.
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
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
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?
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
Bloods should be retested 6-8 weeks after each dose increase
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
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
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...
Hypothyroidism can develop after breast cancer treatment
thyroid.org/patient-thyroid...
Being left on only 25mcg levothyroxine frequently makes symptoms worse. Even if start on low dose, due to age, dose still needs increasing slowly upwards.
Hi, I’m on 50mcg a day. I’ve ordered a test from the list mentioned above so thank you. I currently can’t hold of my past test results as my Internet is playing up.
I didn’t do my test like you mentioned above and they say I only require 1 a year and I’m not due one until December.
That’s ludicrous
Testing should be every 6-8 weeks. Dose of levothyroxine increases upwards in 25mcg steps UNTIL RESULTS ARE STABLE....that means when Ft4 and Ft3 are optimal and remain so after two successive tests 8 weeks apart
There are over 108,000 members on here...in large part because current treatment and understanding is woefully inadequate
Guidelines are clear ...but obviously many GP’s don’t seem to read them
I went yesterday to my doctors because living off cocodamol because of the pain is not sustainable and she offered me ibrufen gel. I really felt like I wasn’t being listened to
Even through 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 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...
BMJ also clear on dose required
Hi
It was one of my many symptoms with my underactive thyroid, even when I was 125mcg of Levothyroxine and bloods looked good, it didn’t go away, so you have my sympathy on this.
I spent so much money on visiting the physio, chiro, acupuncture, It only went away when I started NDT, but, I went down the Levothyroxine route first, and as you are only on a small dosage of levo you really need to obtain those blood results as they hold the key to what’s going on.
I also know when my T3 gets too high my neck starts becoming stiff again.
The other replies have given you everything you need to do so people can help you on here understand what’s going on.
Best wishes
Peanut31
I get this and I’m hypo ! Awful pain stiffness in neck and occipital area
Exactly there
I get massages regularly that helps a lot and ibuprofen x
Thank you. This is so great having people who understand. But can I ask - what is NDT?
Natural desiccated thyroid it’s written about in stop the thyroid madness website and DR Peatfields book on thyroid or DR Wenz website
Hey Nugget13
Neck pain was one of my first symptoms of Hashimoto’s. It was still present when I was on 50mcg but reduced on 75mcg. Now I’m on 100mcg of levothyroxine its 90% better. Literally overnight. I didn’t do anything to help it. So perhaps it’s a sign of being under medicated for you too.
I hope you get better soon x
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