I tested positive with thyroid antibodies quite a number of years ago and have had many hypothyroid symptoms for a long time but TSH stayed just below the upper limit.
After a separate consultation to investigate choking during the night I was diagnosed with moderate sleep apnea and the sleep clinic were surprised that my gp hadn’t done a standard set of blood tests to look at any reasons for the fatigue and sleep issues.
My new gp (had just moved) did a standard set of tests and TSH came back as 5.4 so not horrendous but out of range. They started me on 25mcg levothyroxin and followed up with 2 monthly blood tests. Next test showed no change at all so they increased my dose to 50mcg. The next blood test showed TSH at 5.5 so they put me up to 100mcg.
I’m really not feeling any better (actually feeling worse week on week) so went back for my first face to face consultation since moving to new gp. Compared to what I have read in many of your posts I think I have a very caring and understanding gp practice - I really feel for those of you that are being fobbed off when you have results way out of range.
I now have to do a 24hr urine sample so they can test cortisol then a raft of new blood tests including prolactin which was out of range several years ago but never investigated. Then hopefully I will get to see an endocrinologist - I am hopeful that at some point we can figure out what is going on so that I feel better.
Just wondering if anyone else has been put on levothyroxine but seen no change in TSH and what can cause that?
Sorry for the long post - never been on a forum before.
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That was probably too much on an increase in one go going from 50mcg to 100mcg
Ideally you would have increased from 50mcg to 75mcg FIRST
how long have you been on 100mcg
Which brand of levothyroxine is it
Was 50mcg a different brand
ESSENTIAL to test vitamin D, folate, B12 and ferritin
Have these been tested
What vitamin supplements are you taking
High thyroid antibodies confirms autoimmune thyroid disease also called hashimoto’s
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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
The brand of levothyroxine is Teva and that has been consistent throughout.
I switched to 100mcg on 16 August.
Ferritin not tested since 2016 when it was normal.
B12 tested in 2017 and result was normal.
Folate also tested in 2017 and I think it was normal.
Vitamin d was tested around that time and was found to be a bit low - 32, so I started taking a supplement on the gps advice.
I have stopped taking any supplements atm because I really wasn’t sure if anything was helping and if I could inadvertently take something that makes things worse.
At the last blood test I pushed for free T4 to be added- it came back as 13.5 so classed as normal. I’ve had that test many times over the last 10 years and it has always been at the very low end of the range - highest recorded result of 14.3 and lowest of 11.7.
Blood tests ordered for a few weeks time are:
FBC, electrolytes creatinine & eGFR, HbA1, liver function tests, prolactin and TSH
I always book appt before 9am as I had read somewhere that this can affect the reading (gps don’t tell you any of this do they?).
As I have had the positive TPO test I assume there is no value in having the TG antibodies test as well - is that right?
Am taking my sample to gp tomorrow for the cortisol test so will hopefully have that info to add to the mix soon.
I will look into the vitamin and t3/t4 testing next I think.
Ferritin not tested since 2016 when it was normal.
B12 tested in 2017 and result was normal.
Folate also tested in 2017 and I think it was normal.
Vitamin d was tested around that time and was found to be a bit low - 32, so I started taking a supplement on the gps advice.
Obviously these all need testing
And retest annually
Low vitamin levels are extremely common with Hashimoto’s
Normal simply means within range …..not necessarily optimal
Optimal is
Vitamin D at least over 80nmol
Serum B12 at least over 500
(Range typically 180-780)
Active B12 (private testing) at least over 70
Folate at top of range
Ferritin at least over 70
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
I used to live in Wales and I did go and get print outs of all tests for about a 5 year period.
Moving to England and getting all of that info in an app has been a real revelation. I have a spreadsheet that I log it all in so that I can spot trends and changes (and yes, I have done some graphs too 😂).
I followed the links in your earlier reply and I am going to get the vitamins tested and one of the tests that covers t3 and t4 too.
Really appreciate all this helpful advice - I’m so glad I found this forum.
As I have had the positive TPO test I assume there is no value in having the TG antibodies test as well - is that right?
Correct
High TPO confirms cause is Hashimoto’s (autoimmune)
so you could use Monitor My Health test for thyroid and vitamin testing
I always book appt before 9am as I had read somewhere that this can affect the reading (gps don’t tell you any of this do they?).
Correct
Yes most GP’s seem blissfully unaware of relevance of timing of testing or when last dose Levo was taken
Interestingly Vets are very aware!
Last dose levothyroxine 24 hours before test. To measure the trough…..not the peak
on Levo Aiming for Ft4 at least 60-70% through range
At the last blood test I pushed for free T4 to be added- it came back as 13.5 so classed as normal. I’ve had that test many times over the last 10 years and it has always been at the very low end of the range - highest recorded result of 14.3 and lowest of 11.7.
It’s 12 - 22 pmol/L on most recent test but was 11 - 25 pmol/L on the earlier tests. Don’t know if thats down to lab variations or a shift in overarching guidance.
Levo is a very fussy hormone and doesnt like company when its taken. It eeds to be taken on an empty stomach, 1hr before anything other than water. Many people find taking it at bedtime works well for them.
If you are taking it with a meal or other medications, with a caffeine drink inparticular, it wont absorb well and the result will be that your TSH remains high.
Thanks for replying so quickly Jaydee1507 , I have done some reading and realise I mustn’t take the meds near caffeine and also not within several hours of a calcium rich meal. I also read that I should probably avoid soy altogether.
I started taking the meds at bedtime a while back - allows me to have a protein rich breakfast in the morning.
I am avoiding all other supplements atm too so that nothing is interfering.
So grateful for any advice that gets me healthy sooner xx
Thing is, it's not about the TSH, that's not a thyroid hormone. The important numbers are the FT4 and FT3 results, but the NHS rarely tests those - and if they do, doctors ignore them! But it is important to know what these levels are.
The TSH is somewhat unreliable because so many things can affect it. So, your TSH might be the same on each test, but the Frees could vary. You also need to know how well you're converting the T4 you're taking into the active hormone, T3. And you can only find that out by testing both FT4 and FT3 at the same time, and comparing them. If your FT4 is rising but your FT3 is staying the same - because of poor conversion - your TSH could also stay the same, despite increases in levo.
Thanks for this greygoose - I did request that they tested free T4 at my last blood tests but I have never had free T3 looked at.
My T4 has always been at the lower end of the range but just within normal.
SlowDragon shared lots of link for tests so I will start working my way through them as see if I can get free t3 and t4 done at the same time as some vitamins.
Teva levo also makes me feel bad. I assume there's a filler in the tablet that disagrees with me. What suits one person may not suit another. You could try asking for a different brand and see how that works out.
BlueShrimper thanks for this - it’s crazy that brands of essentially the same thing in a tiny tablet can be so different. I will check up on how I can request a different brand - I am assuming that my gp just prescribes for the dosage of levothyroxine and the chemist decides on brand?
You do have several options. You could ask your chemist if they carry a different brand or if not try another chemist and see what they have. The other option would be to ask your GP to state a particular brand on your prescription, but you would need to know what works for you first.
Ok, thanks - will approach the chemist first then.
I did just find an interesting article on the .gov website about Teva tablets actually being withdrawn from the market from 2012 to 2016 because they had such variable does and efficacy.
Tried to post a link here but can’t for some reason.
When Teva levothyroxine came back to the market, it was a completely new formulation. So the article you found isn't relevant today.
That doesn't mean Teva levo is right for everyone. Some people get on absolutely fine with it, others don't. One persons expereince doesn't automatically apply to everyone. Trial and error is the only way to find out which brand (and dose) works best for you.
You would think that wouldn't you. Unfortunately the NHS seems to run on the lines of 1 size fits all but the reality is we (or a lot of us) react to different medications in different ways. I'm on 50mcg of levo and 20mcg Liothyronine which is a T3 tablet and prescribed by the endocrinology dept at my local NHS hospital. I had been on a Mercury Pharma brand for a number of years without any problem, now they have switched brands to Morningside which keeps me awake most of the night plus a couple of other symptoms which made me feel over medicated. I did mention this to my endocrinologist on my last visit but he offered nothing not even stating a particular brand on the prescription. I have since started cutting a slice of the tablet, perhaps 3-4mcg and I find this works for me so I can only assume the new brand (morningside) is more potent than my old brand.
One reply suggested that I have been put on 100mcg too quickly and should have gone to 75mcg first but what I don’t understand is how taking more levothyroxine can make my TSH number increase? I thought if the does was too high that you start to get hyperthyroid symptoms and therefore assumed TSH drops too low.
Maybe your GP having seen no difference in your first increase decided a 50 mcg increase more appropriate. I'm sure they had a reasoned thinking behind it. Certainly wouldn't be my place to question it. Trying another brand first would be my course of action first though if only to rule out that issue if indeed it is the issue.
But it’s not that a dose of 100mcg is necessarily too high for you. You might end up there, but it’s better to increase dosage in smaller steps, so your body can adjust.
Without T3 and T4 measurements it’s hard to know why TSH stayed more or less the same.
Thanks @dandelions - I have ordered home tests today that will shed light on what is going on with T3 and T4 and also get my vitamin levels checked too
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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).
you still sound under medicated and hope you have them increased.
Quite honestly it took me about 2 years from being severely hypo to anything like ‘normal’. Glad you’ve found a good doctor and just hope you find improvement over time and can practice all the patience you can muster meanwhile. I did find jigsaws, puzzles, online games etc and the company of friends distracting. Good luck!
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