GP won't raise my Levothyroxine

I was diagnosed as hypothyroid in 2012. I had a similar story to so many on here, experiencing multiple underactive symptoms, feeling unwell and weight gain while on low levels of Levothyroxine replacement.

By 2019, I had gained 5 stone over my pre-hypo days. I had elevated BP, high LDL levels and I then had an Hba1c test which showed I was now pre-diabetic. I had been checking for this, as it runs in my family. The GP missed the pre-diabetes and I was told "normal". Luckily, I asked for actual reading results and gave my Primary Care Trust a ticking off for missing my pre-diabetes.

I told them I would now be medicating to my thyroid symptoms and insisted on a raise in my T4 medication, and was given 75mcg. On this occasion, they obliged.

Since 2019 I have felt truly well again. I have lost 2 and a half stone in weight, I can now run for 30 minutes and do this three times a week. My BP is at 113/70 (<120/80), my LDL at 2.7 (<4) and my Hba1c at 40 (<42). So far so good.

For the past year, I raised my T4 a little and I'm now taking 100mcg of Levothyroxine per day. (GP prescribed 75mcg p/day.)

I also now take 1mcg of T3 in the evening. (Self sourced.)

I've found that this tiny amount of T3 helps me sleep really well and helps stop Restless Legs. I have no symptoms of being overactive. I have a Resting Heart Rate of 50-56bpb.

Before my annual thyroid blood test (TSH only) I tried to reduce back to 75mcg of T4. I stopped taking the T3. I wanted to do this to get an accurate TSH reading of where I am on the GP prescribed medication. I knew this would take about 8 weeks.

Without the T3, I have awful insomnia, sometimes pacing the house most of the night. I get the insomnia with or without the RLS. With the reduction to 75mcg of T4 and no T3, I began to feel really unwell again and couldn't exercise. I couldn't bear it for longer than a few days.

So, before my last blood test, I decided to continue with my own very satisfactory regime, at 100mcg of T4 and 1mcg of T3 per day.

I told my GP all of this and asked them to increase my T4 to 100mcg per day as this is what I'm taking. My blood test result was a TSH of 0.37. As it was within range, my GP refused to increase my T4 to 100mcg and left it at 75mcg. Consequently, I begin to run out of T4 towards the end of the month, and I'm re-ordering earlier each month.

Despite having the evidence of how well my health has improved since I took control of it myself (weight, BP, Hba1c, LDL) I'm unable to get an increase in T4 from my GP. Getting any T3 from them is impossible. It seems as if my NHS doctor will only raise my T4 when my TSH rises above 4.2. It can take years to get to this level.

I know where I'm optimal, I just can't seem to get my GP to work with me and it seems they want me to remain unwell as it's more convenient to their sloppy TSH testing.

Do you have any suggestions? Or, please message the name of a private endo who could help.

Sorry for the essay!

[TiggerMe Ambassador]

Most import to be able to make the best of whatever dose is to optimise folate, ferritin, B12 and Vit D for starters, you mention RLS which is often linked to low magnesium levels and as this help with Vit D uptake its another good one to add as most people are low.

Have you got your latest results and ranges? Have you tested privately to see where your fT3 and fT4 levels are... might be that adding a little more T3 is the way to go, I can't imagine how you manage to take 1mcg??

If you are getting away with early reorders and you have told them of the dose that works for you I'd just keep doing it until they get the message... exhausting isn't it

[Hidden in reply to TiggerMe]

I've done all of that and all of those bases are covered.

I also don't need more T3 at the moment as I'm really well, as I explained above. I crush a T3 tablet and take around a 20th!

My ONLY issue, is that the GP won't prescribe what I'm currently taking without my TSH going above their 4.2 level. This is what I asked for help with, or a recommendation to a private endo.

[Jazzw in reply to Hidden]

Just be aware that a GP isn’t obliged to take notice of what a private endo suggests. You may get a private prescription from a private endo but it’ll cost more. You might be much better off just sourcing additional levothyroxine from a private source, both literally and figuratively.

[Hidden in reply to Jazzw]

Thank you. I thought my GP would need to take notice of a private endo so this is useful to know. I feel by now, having managed my condition so well and having been at my optimal for some time, if my GP doesn't have to take notice of a private endo, I'm not really needing to see one. This has saved me some time and money. Thank you. I'll just try and privately source the extra levothyroxine as you suggest.

[TiggerMe Ambassador in reply to Hidden]

You either need to swap to a different GP who hopefully understands more about it or just buy some T4 privately which is the easiest solution, doesn't sound like you need an Endo you could just use Roseway Labs

[Hidden in reply to TiggerMe]

It seems that most GPs are on the same page these days

I agree that sourcing my own T4 looks like the easiest, least stressful solution.

[TiggerMe Ambassador in reply to Hidden]

Can you not buy it from the same source as your T3?

[Hidden in reply to TiggerMe]

No. If it was possible I would have done so! 🤐

[Sparklingsunshine in reply to Hidden]

This is very bad practice, when on thyroid replacement TSH should always be no higher than 2 and in many cases should be nearer to 1. And in some of us the HPT axis doesnt work and we end up with a very low TSH and very mediocre levels of FT4 and FT3.

Then GP panics and reduces dose and we end up on the TSH see-saw again. Its no surpirse this forum is very busy with lots of unhappy NHS patients. Too many GP's lack knowledge and just assume that as long as TSH is in range that is good enough. They ignore the NICE guidelines.

[Hidden in reply to Sparklingsunshine]

Exactly this!

You'd think that having got myself out of obesity, put my T2 pre-diabetes into remission, lowered my BP, lowered my cholesterol, all without medication, my GP would be very happy to work with me when I say where my TSH needs to be... and raise my medication without my TSH having to pass the 4.2 level. But no. The TSH level is all they're interested in.

[Sparklingsunshine in reply to Hidden]

You're not alone, I was diagnosed in 2020 during Covid so my care was all done remotely by phone and I was left for far too long on 50mcg, think it was over a year.

Because my TSH was just in range, apparently that was hunky dory. It wasnt until I joined the forum in 2021 that I realised how lacking, not only my knowledge was, but that of my GP. It shocked me that such a common condition was so poorly treated.

We sadly see it all the time on the forum and many of us were bought up to believe doctors know best and find it difficult to challenge them. Its a real disappointment when we realise we know more than they do 😒

[Hidden in reply to Sparklingsunshine]

I was left on 25mcg for several years, despite having underactive symptoms and no health issues which would warrant such a low dose. Like you, my TSH was just in range and I was left to cope with a whole list of the symptoms on the Thyroid UK checklist.

I checked everything that Thyroid UK mention - vit D levels and so on... the only issue was that I was being undermedicated.

When I eventually got prescribed 50mcg, I stayed on this for several more years until my PCT missed my pre-diabetes. It seems to take years for me to go above the TSH level of 4.2, which is years of underactive symptoms.

Even getting my test results in full was a challenge and it's as if my PCT did everything they could to prevent me getting my test results other than to tell me everything was "normal". We all know here that "normal" can mean anything. I was actually asked why I needed my test results in full!

It is disappointing to find they lack so much knowledge. Once, I had to correct a doctor, who tried to tell me that T4 is the active hormone and T3 the inactive! This is the level of knowledge we're dealing with.

[Brightness14 in reply to TiggerMe]

1 Mg

[TiggerMe Ambassador in reply to Brightness14]

Typo as she splits a 20mcg can you imagine 😵‍💫

[Hidden in reply to TiggerMe]

necessity is the mother of invention

😂

[SlowDragon Administrator]

you can make a new post asking members for advice on non prescription sources

Or see a thyroid specialist and get a private prescription

But BEFORE booking any consultation…..essential to get FULL Thyroid and vitamin testing after minimum 6-8 weeks on unchanged dose and brand of Levo and T3

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)

T3 ….day before test ideally split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Obviously on such small dose T3 that’s impossible

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

thyroiduk.org/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

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Monitor My Health also now 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...

Randox

FULL thyroid test including both thyroid antibodies just £29

Test at home or in clinic

randoxhealth.com/en-GB/at-h...

[Hidden in reply to SlowDragon]

Can you message me private endos please?

[SlowDragon Administrator in reply to Hidden]

come back with new post once you get results

Members can advise on next steps

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will often prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Hidden in reply to SlowDragon]

Thank you for the link. I'm not needing help with test results as I'm able to interpret these myself.

[tattybogle]

TSH is 0.37 on 100mcg Levo +1ish mcg T3

is this within the lab range for TSH ?, or is it just below ?

were you taking that dose for full 6 wks before this test ?

these posts contain info that can be useful for persuading GP to reconsider and prescribe 100mcg (as they know what your TSH is on 100mcg , and these references all tell them that it is ok to have TSH at the bottom end of the range for some patients ).

this one is more useful if TSH is still within range : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-

this one is more useful if TSH is a bit below range : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

These might also be useful : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Hidden in reply to tattybogle]

Lab range is TSH 0.27-4.2, thankfully, or my PCT would be after reducing my T4 medication!

Thank you for the links. I'll peruse these posts. Then the problem will be discussing it with my GP. They all seem to be a bit "the computer says no"!

I suspect the only reason they gave me a 25mcg increase before was because they'd missed my pre-diabetes and were on the back foot, as it were.

[tattybogle in reply to Hidden]

so far i've found that if i keep arguing while confidently pointing out bits from complicated research papers (calmly, so they can't find any excuse to chuck you out)... they will eventually agree to the dose you want just to shut you up. it might take a heated discussion or two, over e couple of appointments ,,, but you can usually get them to prescribe in the end as long as TSH is over 0.04

you just need to make it very clear that you have properly understood the long term risks (as they see them ! )that are associated with low TSH, but are prepared to accept them to improve your quality of life. .. then they can write something to that effect on your record which gets them off the hook a bit , (their main fear is getting done for overprescribing and causing AF/ osteoporosis.... if they can write 'patient understands the risks' they feel a bit safer doing it)

[Hidden in reply to tattybogle]

Thank you I'll try this!

[Brightness14]

Good Luck from one very old runner to another fairly new one.

[Hidden in reply to Brightness14]

Aww thank you. It's been a great joy being able to run from the point 12 years ago, and until 2019 when I could barely walk let alone run.

[Brightness14]

Yes I am so pleased for you keep it up.