Stay put or play Russian roulette and change surgery

[66olives]

Today I finally got to see a GP, not my GP. Apprarently, they will be taking over my care. No reason or notice given. This has only happened in the past when GP has left the practice (or died).

This GP will allow me to up my meds to 100mcg, at my pace and keep me on the same brand (so no migraines), After 6 weeks at 100mcg , blood test and revisiting the symptoms/meds etc. On the whole, seemed very reasonable. Will let me take my TSH as low as 0.3 ml/L. But absolutely no lower.

Here are my reservations:

I don't need to see an endo consultant, the feeling of a lump in the throat is not abnormal with hypothyroidism.

TSH 2.76 ml/L (0 .27-4.2) fine and within normal range.

Free T3 3.1pmol/L (3.1 - 6.8) fine is within range was 4.3 Jan 22

Thyroxine 12.2pmol/L (12-22) fine within range was 13.8 Jan 22

Worryingly the GP said "NHS do not test for T3 and Free Thyroxine because they are not reliable tests." Also implied they do not help in giving an accurate picture of what is going on.

THOUGHTS PLEASE

While I have a GP that is willing to let me have some control of my treatment, I am wondering about the wisdom of changing surgeries. I could end up with a GP similar to the ones I have experienced since I was diagnosed. It feels like I'd be playing Russian Roulette.

[MMaud]

I was told the lab will only test for T3 levels if the T4 is out of whack. If it is in range, there's no need.

Now that I am on T3, it is tested at all times, provided I ensure it is on the blood forms. The only time is is on the form is if the papers come from the Endo.

[GlowCoach Administrator]

Worryingly the GP said "NHS do not test for T3 and Free Thyroxine because they are not reliable tests." Also implied they do not help in giving an accurate picture of what is going on.

This would likely be the same whatever GP practice you switch to anyway. In this group everyone has to pay to get to see their FT3 unfortunately. I've had a GP tell me that T4 is the active hormone (lol) which of course I argued, but anyway if you're getting dose increases then not to worry really. We all know they don't know what they are talking about.

I don't see any reason to switch surgery as likely as not you would be out of the frying pan and into the fire.

[66olives in reply to GlowCoach]

Thank you, Jaydee. Definitely, in the 'better the devil you' know camp. Which is the direction I'm leaning.

I do pay to get Medicheck tests done yearly and will continue to do so.

What I am concerned about is the inaccuracy of the statement. If NHS cannot afford it, that is different, I will pay as I am able to. It leaves money in the coffers that need it more. But providing what I believe is misleading information, is not really acceptable. It leads to distrust.

I went in today with the intention of switching surgeries. Up until today, I have been dictated to, unable to access a GP for help and left feeling so poorly I had to give up work. My scepticism stems from the fact that two GPs from the current surgery have broken GDPR laws, to treat me in this way.

[GlowCoach Administrator in reply to 66olives]

The bottom line is, are you now getting what you want & need. If you weren't and had tried all avenues to reach that point then that is the time to switch. As they have now changed your GP and agreed to getting your TSH down to a more reasonable level then all is now well. Obviously what you have been through to get there isn't at all acceptable, but honestly it's really not uncommon sadly. Doctors really do talk out of their backsides many, many times, especially where thyroid care is concerned.

Changing GP surgery is a last resort in my book.

[SlowDragon Administrator]

Sounds a reasonable GP

You will almost certainly have to test TSH, Ft4 and Ft3 yourself privately wherever you went

Make sure you include testing vitamin levels too

[66olives]

Thanks SlowDragon.

I do get a Medichecks once a year in January but may repeat in 3 to 6 months if I get to stay on the same brand/dose.

I do follow your advice. Pre 9am, no levo for 24 hrs, no vit B's for 2 weeks. Now using tablet dispenser to make sure I cannot forget. Hopefully in 3 months I will feel healthier than I have in years.

Can't believe how reasonable the GP is after the other 2.

[arTistapple]

Stay put. There is no guarantee whatsoever you will find any better. Plus (dare I say) you will have a track record for being ‘awkward’ if your address remains the same. No-one wants to inherit a ‘troublemaker’; although I am certain you are not! In this day and age, it’s all about perception. I would think most of us on the forum have issues we would like clarified for the good of all, if not actual legal cases which ideally should get attention. However there seems to be no benefit (whilst GPs and even endos are ignorant and uncaring) in moving practices. Keep educating yourself here and take up issues as best you can where you are. Do not give yourself any more hassle than that which you are dealing with. Best Wishes.

[66olives in reply to arTistapple]

Already have a track record for being a pain. I had a really bad GP who misdiagnosed me for three different issues. I got impatient in the end when she used text message to drop meds. No discussion.

[arTistapple in reply to 66olives]

Mmm me too and I have not even said half what I would like to. Major misdiagnoses all in a days work. I now avoid contact with my surgery (even though it still has a reasonable reputation) as they have been utter rubbish. I have been with my surgery for about 37 years but my previous surgery in Wales was no better. I have always tried not to pester but in the end we are just a number, just like widgets in a factory. I really don’t think there is anything better elsewhere. The NHS is in a poor state. I worked in a hospital in about 1997 (can’t remember at the moment) and bedblocking was a huge issue even then. What is being discussed over the last few days on the news, as well as many of the other problems the NHS is experiencing?! Bedblocking. The civil servants can’t be blamed for any of that. It’s purely political decisions.

[mrskiki]

I think Choose your battles. I haven't seen a GP for over a year and the random staff who give me my results just look at the range, with 4.2 as now you are 'fixed'. I had a battle at TSH 4.27 as they wouldn't discuss an increase in dose as I was near to 4.2. I may have to change surgeries to eventually go below 4.2, as with such random care I haven't yet got anyone to read the guidelines I have here for lower TSH. Perhaps research other surgeries nearby in case you need to move, that's what I'm doing, but at the moment I would say yes, it's a risk to move.