I was diagnosed with hypothyroidism in 2023 and prescribed Levothyroxine after undergoing extensive radiotherapy for the treatment of throat cancer. However I'm still experiencing a range of symptoms, the most annoying of which is a frozen shoulder and insomnia.
My Gp has insisted that my current Levothyroxine prescription is sufficient and I do have regular blood tests.
Does anyone else experience this painful symptom? It's excruciatingly painful and keeps me awake regardless of painkillers.
Insomnia was one of the most significant early symptoms of hypothyroidism. And it was alleviated by a decent dose.
Sorry - while I have seen frozen shoulder mentioned many times, it isn't something I have.
helvella - Personal Insomnia Experience
How hypothyroidism and levothyroxine treatment affected my sleep.
Last updated 30/12/2024
Link to blog:
helvella.blogspot.com/p/hel...
Thanks helvella.
welcome to the forum
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What were most recent thyroid and vitamin results
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. Easiest option is NHS app, you may need "enhanced access" to see blood results.
If you can’t currently see test results online, simply ask receptionist at GP surgery to give you access. You will need to have photo ID with you.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still 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.
It’s likely your hypothyroidism is result of your cancer treatment
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune …..not very likely in your case …..but best to test
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Thank you so much for all that information, of which I knew very little. I'll definitely take your tip on when and how to have my next blood tests, making sure I pay for the private one will be worth every penny.
You're right, the throat cancer treatment definitely brought on my hypothyroidism.
I'm currently taking 100 micrograms of Levothyroxine a day, you're correct, the manufacturers make often differ. I don't feel the dose is sufficient as I'm still chronically tired, often have swollen ankles. and infuriatingly insomnia too.
I'm sooo glad I signed up to Thyroid UK, your help, suggestions and depth of knowledge is invaluable.
Get copies of results and ranges
Keep good records of results and symptoms
Keep a thyroid diary to monitor how symptoms change with dose or brand change or when improving low vitamin levels
Roughly how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
Other issues that can cause symptoms
1) Very important to take Levo correctly, empty stomach and nothing but water for at least an hour after
No other medications or supplements at least 2 hours after
2) Low vitamin levels
Low iron/ferritin can cause crippling fatigue
3) Malabsorption issues. Very common
In depth but readable research paper here
academic.oup.com/edrv/artic...
4) many members need to always get same brand at each prescription
Work out which brand suits you best and get named brand on future prescriptions
Thank you, the information you have shared with me is invaluable and is already helping me to understand so much more about how I can help myself in dealing with my hypothyroidism, and the knowledge I need to ensure good practice and treatment from my Gp 🤞
Keep reading here - a bit at a time - this forum literally saved my life. The more you know about your thyroid, the more you can help yourself, as the medical fraternity dont seem to want to help. I hope armed with further knowledge you will go fron strength to strength and get a good nights sleep. Sending a hug.
Thank you. I am beginning to learn the truth of what you are saying. Hugs back.
Hoarse
Decreased Kidney Function on Levo?
Switching from Levothyroxine 50mcg to Thiroyd .Anyone with expierence what is the best and safest way to switch and any other expierence?
Swollen and painful glands.
T3 side effects 
