New to this site so a bit overwhelmed with all the info. I have had an underactive thyroid for about 14 years now and take a daily dose of 100mg levothyroxine. I also have left bundle branch block and take a few medicines for that. I am 58 and work a pretty full on 5 day week in the PE education industry with quite a bit of physical activity involved.
I operate normally most of the time but suffer from the usual fatigue (especially in the afternoons), itchy scalp and muscle tiredness but whenever I slow down my body almost falls to pieces! I become incredibly sluggish, I ache all over, I feel very fatigued and struggle to put one foot in front of the other. My weekends feel that they are solely there for me to recover for the next week of work which is so frustrating. I am guessing that most of the users on here feel a similar way but does anyone have any tips that could help me. I take my tablet in the mornings before breakfast.
Many thanks
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hansmuse
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Your symptoms sound like I was at the start. I remember loosing so many months of weekends to just recovering. Have you been generally fine on thyroid levo for all these years ?
Get input from Doctor - it could be something else. Likely on TSH measured and Doctors often run people away from 1 or below which is often better.
Get them doing blood tests. This forum advises to check vit B12 and vit D as well as Ferritin and Folate - these are key ones for thyroid.
Even if you test clear for gluten on bloods you might not be able to tolerate it. You completely stop and if you feel better then stay off it. It wipes me out for a week if I have it.
Many self test on bloods to get free T3 and free T4 hormone levels. Thyroid UK have a page with suppliers. Can be as low as £30. If you are a poor converter to T3 this could be picked up over several tests.
A lot of people on here are the strugglers so it is a bit scary (I think) but they have suffered and they share the knowledge to help others because they see that it does not come easily from NHS. It is also a bit daunting putting everything in writing and it is complex.
The admins especially are amazing.
It is a busy place - post again if your not getting answers so you come back into view.
If you fill in your bio on the profile it will helps them give you advice. You can also see what others have been through.
Getting previous blood test results from Doctors can be easier on apps these days but they will need these. And the ranges for the tests as they are not all the same and it is percentage through range that is useful sometimes.
Do you always get same brand Levo at each prescription
Make sure all other medications or supplements at least 2 hours away minimum from Levothyroxine
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Exactly what vitamin supplements are you taking
Is your hypothyroidism autoimmune
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.
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
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.
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
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 or if not on adequate dose
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)
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
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
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
I feel your pain. Hypo peoples digestion slows with the disease which lends to the fatigue. After eating protein and animal fats in a meal, take an HCL tab with Gentian Bitters. You'll pop awake in the morning like the early bird crowd. Eating gluten is like swimming upstream for most. Adding T3 to your meds helps. Always check with Doc for T3 addition which they frown upon because they all think we will have heart attacks while on them.
Hi hansmuse . Sorry for the late reply . You say that you're taking your tablet before breakfast . Are you leaving at least an hour before eating and taking your other meds , to make sure your levothyroxine is working properly and if you are maybe you should see about getting your levels checked and it does sound like you have a physical job which will be tiring in itself . But like you yep I've had a very itchy scalp for years which actually has sores on which I will be asking my gp if it's all related to my hypothyroidism . Hope you're feeling a bit more energised soon
Thank you. Leaving only 30 mins. There's been a lot of good ideas since my post so going to sit down and look at how I manage things. The frustrating thing is apart from a 6 month blood test there is no other info or contact from my GP so maybe time I looked into things further.
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Feeling better...but!
Still feeling rubbish ?
Advice please - T3 trial, TSH undetectable, feeling awful!
