Have you been so let down that you've changed G... - Thyroid UK

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Have you been so let down that you've changed GP Practice ?

Chasing-rainbows profile image

Both myself and my husband have been so let down by our current GP practice. We've only been with them since the summer, and we do realise that Covid may have affected usual practices, but it has been one thing after another and I have absolutely zero confidence in them at all.

They booked me with a nurse practioner who has refused to re-start me on levothyroxine due to fears of audits?! And said I need to chase with consultant and get them to email the surgery to confirm if they want me on it or not.

I'm getting nowhere leaving messages with the consultant, and feeling terrible.

They are refusing to give my husband his results at all, sometimes saying they aren't back, other times saying they are with the Doctor, then saying they are all fine, no action required, and then saying he has a telephone appointment to discuss them?! So which is true?

We are at the end of our tethers!

On the plus side, I did my private TSH, T3 and T4 test today so hopefully those results might give an incline in to how things are doing, but even if they come back out of range I really don't believe my GP will act on it without the green light from the consultants.

Just ranting... to try and de-stress.

:(

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Chasing-rainbows
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12 Replies
shaws profile image
shawsAdministrator

I think I would tell the Nurse that you will take 'action' against her response and also complain to your MP. I'm sure we can get a print-out of our results - with the ranges - from the surgery.

Some of the doctors in the practice I use had no knowledge of anything to do hypothyroidism, especially the one who told me:-

Your TSH is too low: your T3 too high: and T4 too low.

"Yes doctor my TSH is low because I take T3 only and I dont take T4.

GP: 'but T3 converts to T4

Me - "no doctor - its the other way around.

Chasing-rainbows profile image
Chasing-rainbows in reply to shaws

Definitely feels like banging your head against a brick wall.So tired of battling.

(And kicking myself, as it was me that stopped taking my levo at my last GP practice, and no records or repeat precriptions have been transferred across, so they won't just re-start it now... so going round in circles)

Let's see what news the thyroid function tests bring this week and go from there. It is just such a feeling of going round in circles.

Chasing-rainbows profile image
Chasing-rainbows in reply to Chasing-rainbows

Right, managed to speak to someone at the hospital who is going to email the consultant, lets hope they are able to confirm with the GP that I should be on levo.

shaws profile image
shawsAdministrator in reply to Chasing-rainbows

That's good you have made contact and hope you get prescription soon.

Chasing-rainbows profile image
Chasing-rainbows in reply to shaws

Thanks Shaws. So grateful for this place, it is saving my sanity at the moment!

birkie profile image
birkie in reply to shaws

Hi shaws❤️

😂😂😂😂 I'm laughing out loud, my doctor said exactly the same thing when he questioned me about my TSH being 0.05..and my T4 being 3..saying T4 is to low.. Like you I said "that's because I take T3 only he said same thing about T3 being converted into t4😂😂 I said no it's the other way round doctor! He got a bit angry saying" ho yes that's what I meant your confusing me"😂😂 we don't stand a chance with GPS like this😂

shaws profile image
shawsAdministrator

I found, to my cost, that GPs were the most uneducated/unknowledgeable to consult with. I have also had some implausible statements and I told the GP he was wrong, so I was not a 'popular' patient. If you click on my name you can read my 'history' of before/after diagnosis.

I was very fortunate to consult with two of the 'old school' doctors, Dr Barry Peatfield and Dr Gordon Skinner - now both deceased.

The following link is about a woman whose life was saved by Dr Gordon Skinner and she then took her case to the Scottish Parliament to change attitudes of the medical professionals for people who had pitiful treatment if hypothyroid.

dailyrecord.co.uk/news/real...

On this forum, the majority of members have diagnosed/treated themselves with advice from others who've gone through stressful times. Many seem to know more than Endocrinologists/GPs.

We cannot stop taking thyroid hormone replacements (levo for instance is one) so we need regular prescriptions.

Some people who've been on thyroid hormone replacements for a while may need increments to their dose.

You might need to get a private blood test.

When my TSH (before I was diagnosed) was 100 GP phoned to tell me there was nothing wrong with my blood tests.

(if you click on my name it will take you to my page and my history is in it).

What I do not like about the BTA - is that they withdrew T3 and NDTs - despite the Natural Dessicated Thyroid hormones given since 1892 and saved thousands of lives. No need for blood tests or ranges - it was always about diagnosing the clinical symptoms. They are far less knowledgeable that the majority on this forum. They also removed T3 but now restored.

Chasing-rainbows profile image
Chasing-rainbows in reply to shaws

It is maddening. Your story is unbelievable that they said nothing was wrong with a TSH of 100! Can't imagine how that must've felt! I'll read through your history now. And I know what you mean about not being a popular patient, I've a feeling I am a nuisance to them asking for print outs etc, but needs must!

I have only ever had 'in range' TSH although above the 2.0 that was recommended for trying for a baby which is why I was started on it. I took myself off of it because I wasn't getting pregnant at all whilst on it, and took it consistently for three years, and in that time had only one pregnancy which ended in miscarriage. Now my TSH is 4.1 at my last test, and will see what my private results come back as this week. So in the same boat with being 'in range' but still above where it should be for trying for a baby and quite likely creeping up as the TPO antibodies do their damage. The 4.1 result was an afternoon blood test and I had eaten so could likely have been higher. I am slightly apprehensive about being back on levo if it affects my periods again, but just trying to get into optimum health now, and realising that I probably need to monitor myself through private blood tests etc. in order to do that, as the GP's always seem happy if the tests are in range rather than optimal. Almost feels like it would be more straightforward if my TSH was above 10 as then there'd be no question about whether levo is the right thing or not, I end up confusing myself worrying whether I should even be pushing for it.

Capella1 profile image
Capella1

oh yes, mine is to busy always. I saw a paramedic last time. he was good listening but needed too talk with doctor 🙄. I wont results to writ e here but I wait.

HowNowWhatNow profile image
HowNowWhatNow

Yes. We changed practice last year after years of borderline malpractice. Some not so borderline.

The final straw was when my four year old could not get a face to face app’t despite asthma exacerbations over several days and the receptionists claiming that they prioritised children with breathing problems yet doing nothing to…

The new practice has more good GPs in it, proportionately. It has two GPs who I’d call top tier. However it does suffer from the NHS-wide problem of multiple new layers of triage before you ever get to speak to / see someone.

Most recently I was referred to a “Hub” doctor for something the receptionist decided was urgent, so not a GP in the practice as they only deal with things booked weeks away now. Hub doctors are not empowered to make all the decisions practice GPs can and practice GPs also have to sign off all their referrals etc. On this occasion the practice GP, when it came to signing off the Hub doctor’s decision, disagreed with the Hub doctor’s decision - neither one of them had seen me of course - and so insisted that they see me, to make the ultimate decision on what was needed. This meant that over the course of a week I had to have at least 5 maybe 6 long calls with receptionists and 2 GP appointments (one also with a paramedic there, whose work the GP was checking) all for something that was notionally urgent, and could have been done by a single practice GP and one receptionist call, in the not very long ago past. And the practice GP had to check and overrule the other (Hub) doctor’s notes and then explain to a practice secretary what he’d decided, so she could call me, wasting his precious time, too.

I share your pain and annoyance.

Chasing-rainbows profile image
Chasing-rainbows in reply to HowNowWhatNow

Drives you bonkers, the system needs an overhaul as it's just not working anymore. I am the sort of person that hates being a nuisance and chasing things so this is really stressing me out, but realising if I don't do it for myself, no one else is going to help me. It's really bloody hard though.

HowNowWhatNow profile image
HowNowWhatNow in reply to Chasing-rainbows

Like you, I hate being a pain. But this shouldn’t bar you or I from getting half decent healthcare. It’s hard to know how much longer the U.K. can go on like this, with patients in need struggling to speak to anyone.

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