A predictable and unsuccessful GP consultantation. A rant

[Mazzer]

Hi everyone

Basically I need to vent. Having read many posts on this forum I realise my experience with the medical profession is not unique.

I had a TT in September 20 and have been trying to work positively with my GP to optimise my meds. He admitted he knew nothing about T3 and did take the time to consult with the Endos when I explained to Him that’ although the n the normal range my TSH was too high. The endo

Agreed and I got my TSH down to 0.19. Now the T4 was 25 and 30% over range. GP said not further action desire me saying I feel awful and thatT3 had not budged and was at 50%.

I asked to be referred to the endo and this has backfired as he decided without any direct communication with me that I am over medicated and will not consider a T4 reduction and a T3trial.

Instead of looking at a conversion issue I am now going to go from 150mcg to 125mcg (a dose that took my TSH to over 4) and was previously considered under medicated., I have been told to wait 3 months to see what happens. I know what happens!

The power and control and utter arrogance of these people astounds me.

Thanks if you got to the end. I feel a bit better.

[MiniMum97]

It’s so frustrating isn’t it. I had a similar conversation with an NHS endo recently. Who had previously said they medicated based on symptoms but then refused to do so when I became symptomatic suddenly denying that’s what he said. He was rude. Talked over me and wouldn’t listen.

I went private and am now back on levo. It was a much better experience all round. He at least listened and he’s also comfortable prescribing LDN which I would like to try.

I found the whole profess of dealing with the NHS endo team frustrating. Getting my blood tests results was an absolute ridiculous nightmare! I had to get PALS involved.

I really do not understand why it all needs to be this bloody difficult. As if our lives are not hard enough already managing a chronic health condition!!

[Mazzer in reply to MiniMum97]

Thank you for your support. I am considering contacting PALS as I think this response and attitude is unacceptable. It feels like I have nothing to lose. In my area all of the Endos are diabetes gurus. Thyroid issues are so boring and insignificant.

[Carys21 in reply to Mazzer]

I did that (contacted PALS) for the same thing - the reply was condescending saying that the endo was the expert not me

[Mazzer in reply to Carys21]

Marvellous. What’s the point!

[Carys21 in reply to Mazzer]

There is no point, I wasn't even offered levo . I had high antibodies and high TSH, low T3, low T4 and high RT3 and a diagnosis of hashi's (from a £300 test I paid for with a proper blood draw at Genova Diagnostics) The NHS endo looked me in the eye and said you do not have hashimotos!!!!!!! (the lying lowlife). I told my naturopathic doctor who had arranged the Genova test for me and he was horrified. The Naturophic doctor offered to treat me with Armour on prescription but the cost of that was wayyy out of my budget. I started treating myself with good quality over the counter NDT and supplements from Stop The Thyroid Madness book and never looked back. And I have never gone back to the doctor either, I am disgusted with the way the NHS treat thyroid people.

[Lotika]

Ugh, I do sympathise. I had a good whinge here yesterday about how these GPs and endos are in control of how well I feel at any moment of any given day and will be for the rest of my life, which, hey, isn’t cool, but wouldn’t be the end of the world if they actually knew what they were doing... and listened occasionally. But in my experience they don’t. Gosh, why does GP think you need to wait for 3 months?! How do they explain that? Surely you on 125 mcg will look however you are going to look (in blood test format!) after 6 weeks? I would bother them again after 6 weeks. It sucks to know you are going to feel rubbish for 6 weeks though But I can’t see a good reason why they would need you to feel rubbish for 3 months?

[grumpyold]

I feel so sorry for you.

My levo dose was reduced just before Christmas based purely on a TSH result. I was not consulted and only found out about the reduction when I went to renew my prescription.

Fortunately there is a wonderful nurse practitioner at the surgery who understands the importance of testing Ft3 and Ft4 and she was able to get a locum there to back her up and got my dosage put back up to where it's best for me.

I have previously complained in the past when ignorant GPs have tried to reduce my dose based on my TSH (it's always suppressed-looking because I take Metformin so totally unreliable as a measurement) and what did the surgery do?

They had the cheek to switch off my patient access, disabling me seeing my records and results etc !!

🥵As you say, such arrogance.

I really hope you can get this sorted cos I know what inadequate meds feel like.

x

[Lotika in reply to grumpyold]

OMG. They got something wrong and then they punished you by switching off patient access...

It’s the medical version of cancel culture, I think. Are we not allowed to disagree with them? Especially when they are so often wrong...

[Kazbe in reply to Lotika]

That’s awful I would ask fir a print out of my results and medication and ask to speak to or write to the practice manager as you have a right to see your results . They will soon get fed up of you asking for printouts ! hopefully you can move forward and feel much better on the right dose

[Danyosu]

I empathise, won't bore you with details, but I find the NHS and the UK medical system to be stuck in medieval times. A disgrace! I've been in the UK over 30 years, and still have to be treated abroad, privately, for any serious medical issue. I even had private medical insurance and saw a specialist in the UK privately. He was possibly even worst than the GPs. An utter disgrace. Rant over.

[Rapunzel]

Mazzer I think most ppl here will empathise.

There comes a time when you have to turn your back if you're getting nowhere, take responsibility and possession of your own complaint and strike out on your own. Thousands of sufferers all over the world do this and of course, because patient testimony is given much less credence than endos blessed blood tests and endless cruel tinkering with our doses, their views are unlikely to change when they spend half a day of their training on endocrinology and the vast majority of endos are diabetes specialists...

To avoid this sh*tshow, spend a day on here, make ample use of the search facility (not very good, I'm afraid...it might be worth you looking to the right of the screen (on a laptop) for related posts, if you come across something which chimes with you.

Yes, it's well scary starting to self medicate. The biggest thing is going slow and the cost of regular blood tests until you're feeling better. monitormyhealth.org.uk/ gives a T3 T4 TSH test for £29 a pop, which is all you may need once you've got going. Look out for SeasideSusie and SlowDragon who are our resident vitamin ninjas and can help you make sure your vitamins/minerals are in a good place to start with. Good luck, hun

[Mazzer in reply to Rapunzel]

It’s a punishment for asking questions and trying to take some responsibility for my health I guess.

[Rapunzel in reply to Mazzer]

Punishment my big fat @rse. Misogyny more like. And unfounded arrogance. Ignore. Bone up. Prevail.

[Mazzer in reply to Rapunzel]

Yes I’m on it. Mysogyny is definitely the root of this bollocks. I have a plan.

[Mazzer in reply to Rapunzel]

Thank you Rapinzel.