Does your GO care about your under active thyroid?

[Fiddlersgreen]

It feels like I’m pulling teeth trying to get help/answers from my GP.
I was diagnosed with under active thyroid in August and prescribed Levothyroxine 50mg, was told to book a block test for November.
Had blood test in November, the next day I got the standard “your blood test results were normal” text. That was it. I had to call and ask for a telephone appointment to discuss the results so I could know if the medication was working or if dose needed changing etc. I thought it was odd that I had to chase this up myself considering the reason for test was for thyroid update.
Same has happened this time with my latest tests and I have had to chase the GP to ask for my results only to be told I just have low vitamin D and thyroid is currently “normal”.
Does anyone else have this much trouble getting support from the GP for this?

Standard (shit) treatment. Thyroid patients generally have to educate themselves about the condition and the NICE guidelines (and the inadequacies thereof) and then argue to even be told their actual results, before getting into any discussion of treatment. It is a PITA.

Fwiw many people feel ill even when their numbers are within reference ranges. Nice guidelines state that if you're still symptomatic your treatment should be tweaked until you're not, reference range or no.

And anyone wanting a baby needs their TSH below 2.5. I've had to explain that to 3 different GPs. 🙄

If the test was normal (assuming it was, some GPs are a bit pants with thyroid levels) then YABU to expect further intervention from the GP. The levo is working, retest in 6 weeks to check levels again.

Yes. Like getting blood out a stone

I ended up at immunology by mistake (long story), who seemed to be bored that day so ran a load of tests. Came back with anti thyroid antibodies or whatever they're called, recommended I needed a referral
GP ignored it and said I didn't need treatment as it was sub clinical
Eventually my TSH went to 7.8 and I got.... 25 of levo. Which did fuck all surprisingly as I'm 5ft 10

I'm under haematology who is constantly exasperated by my GP (imagine Charlie from clarksons farm), he rang my GP, asked about the referral and then said homeopathy wasn't suitable for thyroid conditions and could I get a proper dose

Referral refused again (apparently I have hashimotos) but I get 75 of levo which leaves my TSH around 1.2
I don't feel any difference

Oh and they said my vitamin D was "a bit low"

1. That was my level which is not really "a bit low"

That's without mentioning the fact they didn't notice I had virtually no neutrophils for 8 years

just realised so many errors in my op (including the title!) sorry about that.

@Nothingbuttheglory thank you for your reply. I’m sorry you have had bad treatment. Sounds like I’ll need to be on the ball with this.

@Can2022getanyworse thank you for your reply too. It’s not that I was expecting further intervention, I was just surprised that I chased for results as I’d heard nothing after 2 weeks only to be told I had low vitamin D and to buy some supplements, no mention of the thyroid level, I had to actually say “what about the TSH as that’s what the test was actually for” and then he said “oh that’s fine”

I’ve just realised he didn’t mention how long I should wait to retest, I assume 3 months as that was the last duration but I will also run out of medication before then 🙄

I have been hypothyroid for around 12 years now, it's very poorly understood by GP. They are only interested in the T4 level but if your body is not converting it into T3 then you can still feel symptomatic even though test are 'within normal range'.
Best thing to do is educate yourself and eat as well as you can.
You can also get a test done through Medichecks, I can't remember exactly how much it costs but they often have a reduced rate on Thursdays. It's a home blood prick test.
There's also some good thyroid support groups on Facebook.

I’ve been on Levothyroxine for about 25 years following Graves and radioactive iodine treatment. I wouldn’t expect any further comment or need for discussion with my GP about a normal result.

I can see my TSH results on the NHS app,.

The GP and nurse practitioner refuse to acknowledge that TSH should be around 1, and instead use the ranges that should be used pre-diagnosis.
Because I argued with them, I have been prescribed HRT, which I just find bizarre that they'd do that rather than admit it under-medicated for my understanding active thyroid!

@MrsRosieBrew not even to say when/if I should retest? Surely if I run out of medication then my levels will no longer be “normal”
I am new to this, 6 months in, without ever seeing a GP face to face or have anything explained, just “take this medication”

@PennywisePoundFoolish I can’t see results on my app, the receptionist said the surgery does not support this function.

I have never had T3 or T4 mentioned to me, only TSH

Ask for a referral to an endocrinologist who specialises in thyroid not diabetes.

Your GP will be treating by numbers (and they've not even got half of them).

Your levothyroxine dose needs to be titrated in initial stages of treatment to get the appropriate dose for you to feel well, not so the 'numbers are in range'.

I believe you can request your medical information is available to you on the NHS app - I just needed to give permission and it was done the same day. It goes back years.

www.nhs.uk/using-the-nhs/about-the-nhs/how-to-get-your-medical-records/

In my area you only get T3 and T4 results if the TSH is out of range. I think they've even reduced it to T4 only now.

This is a condition for which you're not "looked after", you have to educate and advocate for yourself. It's unfair but I lived abroad and it was the same there!

You need to feel normal again. Then you need to find out what your TSH (at least) number is. And then you have your number for for me it's between 0.3-0.9. Which is officially under range. I've had to remind HCPs about bellcurves and how there needs to be some outliers to make the normal range the norm....

I would change GP surgery if they're not going to let you have/see the actual results.

You need to get back in touch with the surgery. 6 weeks is the earliest you can be tested, but it's less reliable than 8 weeks. When I've been out of whack, and at the beginning, I had tests 6-8 weeks (I was abroad, so not sure if there's a cost saving thing going on in the NGS). However, it's utterly pointless to test if you've not been taking levothyroxine.

I'm not sure how long the prescription was for. And are you certain it's not a repeat prescription? If you're over the 6-week mark then you can try pushing for a test now. If that's refused you need to get a repeat prescription.

You cannot sit back and wonder, or wait for them to remember you. You absolutely need to be assertive about this.

OP once you're on levo you will be for life. Its a repeat prescription for life - I get 2 months at a time, and initially was getting retested every 6-8 weeks until the dose was sorted.

You need to be a bit more pro-active. Get onto the gp to request a repeat blood test (unless you know the levels, would you be happy to post them here?) and a repeat prescription. You can ask for a prescription waiver form (can't remember what it's called) which means you can get free prescriptions for life.

If your levels are still strange then you should get a change to your medication, this might be done by the gp automatically or they may request to see you. Remember that if properly medicated your blood results should be well WITHIN the normal range, to the lower end really. If you still have symptoms then press for a referral.

Thank you everyone for the advice.
I will be more pro active about it, I’ve not been told any levels so that’s my first step is to find out what my levels have been and go from there.
It’s been just over 2 weeks since my last test so I’ll need to wait for the next one if minimum is 6 weeks and I’ll check out the free prescriptions that sounds great!
I must admit I got a bit freaked out when the GP said I’d be on medication for life and I guess I expected a bit more support with it but it’s great to be able to ask on here

I am sympathetic to those who are or where still struggling with symptoms but if your not..if you feel fine on your dose of levo you are being vvvv unreasonable.
You had the tests, you've been prescribed the right medication, you are having the correct monitoring and your levels are in range ..what more do you expect the gp to do ?
It is patients responsibility to call for results at my practice because if I called everyone about their blood tests most of which are normal, I'd literally do nothing else. This week alone (and I only work two days clinically) I have had 563 results to look at . Imagine if I had to call all those people to tell them everything was fine,just carry on taking your meds.
If you still don't feel right make an appointment and go in and discuss it with your GP.

My GP seems to care quite a bit about my thyroid even though I apparently don't have a thyroid condition, because a) I'm on a medication that potentially fucks with it and b) my results come back a bit batshit, e.g.

• beginning of 2022: TSH way below reference range (0.07), free T4 normal (17)
• end of 2022: TSH just above reference range (5.02), free T4 normal (13.1)
• beginning of 2023: TPO antibodies totally normal

Just had another thyroid blood test yesterday as part of my regular medication monitoring and God only knows what it'll say this time 😅 My guess is that my TSH is working hard doing some homeostasis shit for me, so I guess I shouldn't complain too much, but who knows how long it'll hold out… I can only assume if they my meds do succeed in buggering my thyroid, I'll graduate to the same situation all of you are in 🤣

I'd second the mention of the NHS app. Makes life much easier, but you do have to be okay with seeing blood test results, which sounds obvious but it's easy to see an out-of-range number and panic, even though it's actually fine in context.

I'm in a similar situation, if the results come back as normal I have to request more medication basically. Not even sure if I need another blood test before my next lot as I wasn't told but it's not a repeat prescription so I assume so. Unless the gp is planning on taking me off it because the results were normal in which case I'll be swapping to the gp that put me on it in the first place as she told me it was a lifetime medication. From the sounds of it though I'm a lucky one because I'm only on 25mcg and it's brought my tsh down from 37 to 2.8!

This is pretty normal. All new hypo-/hyperthyroid patients should be referred to an endocrinologist. It can be a long wait to get seen, check with your GP that you have been referred.

You need to be asking for copies of the results and/or access to your online record so you can see the results because "They're fine" is the usual fob off from the GP's receptionist when the results are either ok or marginal. Educate yourself in what the results mean. Be very careful of thyroid support groups on social media/online - they're infested with quacks and the sort of alternative practitioners/proponents of alternative theories that prey on people feeling vulnerable. Start with the NHS and NICE guidance first, then go into support groups with some basic knowledge.

If you're in England, remember to claim your medical exemption certificate for free prescriptions (all prescriptions, not just the levothyroxine).

Low Vitamin D is normal in the UK. Everyone should be taking a Vit D supplement in the winter months.

Newly diagnosed as hypothyroidism (hashimoto’s) in November, so feel your pain.
my TSH levels were off the charts high so swiftly put on 100mg Levo. This brought them into range - GP was happy but I wasn’t. It took awhile and quite a bit of reading to learn more about what I needed.
I recommend the book be your own thyroid advocate- it’s simple to read and greatly helped my understanding. Book
Another vote for getting the NHS App and requesting full access to your medical notes. At least that way you know what levels you feel good at and what levels you don’t.
In the end I had to go back to the doctors as my levels were ‘normal’ but it not for me as I felt awful. It just so happened I had a medicheck test done as I wanted my t4 & t3 levels checked and I’d gone out of range again, so was able to get my dose increased.
My understanding is, GPs only check if you’re in range, whereas you want to be treated as an individual and finding where that is for you is key - so having access to your results is essential.

I definitely haven’t been referred to anyone. I was diagnosed in august and referral has never been mentioned, I didn’t know that should be standard.

I did mention before but apparently my surgery does not support online services so I cannot access results online.
I am going to call them today and find out what my levels have been.

I am still having symptoms, I am tired, miserable, heavy periods that I’ve never had before and I’m on the pill so they’ve always been quite light. Also been dieting and exercising since beginning of Jan and lost only 2 pounds. GP said because my levels are “normal” then it’s not the thyroid causing these issues. He said I need to give the diet and exercise time to work and that the rest is due to my age and acne medication I’m taking.

Yeah they are really undereducated about it. I have been taking 125mg for years and GPS are really unwilling to reduce my dose (it had to be upped when I was pregnant)

the only time I’ve ever had a proper conversation about it was with one of the consultants when pregnant. They pay attention then because pregnancy can really mess with your tsh which in theory can affect your baby

I apparently have an over active one. GP wasn't concerned, consultant on a different medical issue was very concerned about the readings. Who do you believe?

How do you feel? Do you have any symptoms of being hyperthyroid?

If the consultant isn't an endocrinologist but specialises in something else I'd be inclined to go back to your GP and ask for an appropriate referral/ opinion.

Consultants from other disciplines don't necessarily understand thyroid function test results and can misinterpret them. I was told by a HCP that my TSH at 12 was too high and I should stop my levothyroxine medication immediately. I then had to explain what TSH is, what the test result was, and the impact of stopping medication. 🤦‍♀️. You're your own best advocate when it comes to thyroid.

I haven't felt 'well' for a while but it isn't clear if the menopause or my thyroid is causing some / all of my symptoms. I have had more bloods taken so am hoping for answers soon.