Hi, I’m still battling to feel better. I’m on 75mg of levothyroxin. I started on 25mg and each time I have felt better and then started to struggle a couple/few weeks down the line with tiredness. Is this normal?
I have needed to go back and see the doctor for a while, but am still waiting to get a blood test and think he will just fob me off until then. TBH I have not got the energy to be messed about, really really struggling to stay awake!
Appreciate everyone on here x
Yes, that is normal. It just means that you're ready for your next increase. 
I just have to convince the doctor, he wasn’t into upping the 50 to 75 and said if I came back we would have to look at other options as to why I’m tired! 🤨😵💫
Then he's a very ignorant man. 50 mcg is just a starter dose. It should have been increaed to 75 mcg six weeks after starting it. Does he just test TSH and nothing else? What was your last TSH? Really not surprising you're tired on just 50 mcg levo.
I started on 25mg last November. It has taken 8 months to get to 75mg!
My last TSH was 4.19 and classed as normal. They won’t test T3. That was at the beginning of June. I managed to persuade him to give me another 25mg so I was on 75mg.
It was classed as normal because it's within the so-called 'normal' range. But I'm afraid that doesn't make it normal. But doctors don't understand ranges and don't really know how to interpret blood test results. Over 4 is far too high. It means you're still hypo. It should come down to 1 or under. But he should be testing the FT4 as you're taking T4. That seems only logical to me. But, I'm not a doctor.
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
75cg is only one step up from standard starter dose of 50mcg, so unless extremely petite you’re likely ready for next dose increase
Levothyroxine doesn’t top up your own thyroid output, it replaces it
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...
Some people need a bit less than guidelines, some a bit more
Get FULL thyroid and vitamin testing via GP or privately
Testing 6-10 weeks after each dose change
Which brand of levothyroxine are you currently taking
Is it same brand as when on 50mcg
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
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
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
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
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...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
I think I’m going to take this information with me to the doctor.
My last delivery of levothyroxin was a different make than before! I was on Accord.
I take supplements every day and really notice a difference when I don’t. I have checked them previously and they cover what I should be getting.
If I get no where with the doctor, I look at doing it private.
Thankyou so much for all the information.
Hoping to feel normal again soon x
hi LouieHusky,
Your immune system may still be attacking your thyroid which could be why your Levi dose needs to keep going up. I would ask yr GP for an antibody test to be sure.
I would also explore the root cause of why your immune system is attacking its own tissue - for me it’s usually down to stress, not looking after myself properly, unprocessed trauma, hyper vigilant nervous system etc. All the fun stuff 🤪
This can also affect your adrenals - which may be contributing to why you feel so tired.
I am studying to be an auto-immune coach atm. I reversed my ulcerative colitis 7yrs ago and am currently stable, no symptoms, with Hashis so I find this stuff, especially our ability to self-heal, absolutely fascinating.
Please feel free to DM me (not a sales pitch, just looking to “practice” on different case studies - no charge - and also very happy to help if and where I can)
thankyou x
Hi i’m fairly new to this group but so glad i found it very helpful.I was on Accord levothyroxine for a year the side effects were horrific so my dr told me to stop useing them waited five weeks for it to be out of my system and was told to have another blood test.I slept twenty hours out of twenty four i was drained and had no appetite at all. My blood test was done and i am now on 50mg of Eltroxin levothyroxine i have no side effects but i think they need higher i’m still getting tired but nowhere near what i was like before them. Going back for a check up so i will see hope you’re Dr understands don’t give in Good Luck 🤞
I had a call back from the doctor, explained how I was feeling and really struggling. The answer was to wait for my blood test next Monday, and how my previous test was within the parameters of 4.2, I was 4.19!
I tried to say that no matter what the blood test says I am really struggling with tiredness and joint pain and would it really hurt to up my dose to 100mg. I cited NICE guidelines which the doctor looked up and backed down slightly by saying I could maybe take an extra 25mg until my blood test and I see my regular doctor!! Angry and frustrated 😩
Honestly what actual planet do they live on!! Argh I'm so mad for you. Each day we are left feeling like crap is another wasted day of our lives, and I'm absolutely sick of it. Well done for standing your ground, I hope you can get somewhere with your GP next week. Ive been in a similar situation, read my bio if interested x
Thankyou, I’m printing stuff out and going in all guns blazing next appointment 😬
I know its just a phrase but the all guns blazing rarely works. Throwing lots of facts and research at ill informed GPs often backfires. Try to pick the one max two guidelines that helps you get 25mcg dose increases until 1.6mcg per kg of weight and just focus on that win. Try not to be angry the doctors just do not have the guidelines, clincal trials and knowledge to support going off script and whilst some enlightened GPs find a path forward many just have not got the personality or air cover to do this. THis isnt just an NHS problem, their is insitutional resistence to thyroid treatments worldwide though some countries are better than others. Think of it as similar to GP reactions to menopause in the mid to late 20th century. (and still today sometimes sadly). I was sick at 4.6 TSH and put on a low dose of levo for years, I had every symtpom on the list including finally anemia but just couldnt get them to accept that I had a thyroid problem. So I gave up and like many here took matters into my own hands. But good luck, do give it a good try first.
I know what you mean, I need the doctor on my side. Thanks
levo brands!
When to increase T3 and reduce Levo??
Four months on levo - maybe a dip? 
is levo making me ill?
Decrease in Levo?
