I was referred to my local NHS Endo team in Dec 2019 although my treatment plan has not progressed at all and I have continued to deteriorate.
1). First appt Feb 20 cancelled by them
2). Second appt March 20 changed to telephone (on first day of lockdown) and that Endo said bloods fine (they weren’t) found out later that person was a diabetic specialist and requested alternative as he wanted to sign me off.
3). Following lengthy complaint to PALS received an apology and allocated a different specialist
4). Third appt July 20-symptoms significantly deteriorated-High Cholesterol, High blood pressure, Elevated liver enzymes, Elevated Blood sugars, (positive for diabetes although missed by this Consultant)..., arranged US to confirm NALD..., no treatment with further review scheduled Nov 20
5). Allocated a third Consultant by them and had to cancel the Nov appt due to being in hospital on the same following surgery (hysterectomy)
6). Appt rescheduled to Dec 20 although cancelled by them due to Covid
At the point of the initial referral in Dec all of my other blood work was normal. They are not sure when they can fit my next appt in..., my confidence and trust in this team is in very short supply.
If my GP is happy to refer me to a private Endo (I have researched and found a reputable one in the next county) would that mean that GP would then be happy to work with the private endo and prescribe any treatment on NHS.
Sorry not too sure of the process of private specialists working with GP’s. My GP is very supportive although T3 was recently under range and this wasn’t followed up by practice nurse so definitely need some outside help.
TIA 🙏
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Lassithi
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Often consultant requires letter of referral. That’s a formality as with private consultation GP can’t refuse
Strongly recommend getting FULL Thyroid and vitamin testing done BEFORE consultation
A) essential to get all tested before first consultation otherwise it’s waste of time and money
B) all thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
C) private testing via Medichecks, Blue horizon or Thriva is usually cheaper than via private consultation
D) getting all four vitamins tested and supplement to optimal BEFORE seeing consultant
When were thyroid and vitamins last tested
How much levothyroxine are you currently taking
Do you always get same brand of levothyroxine .....which brand
Thanks for your reply-totally agree a waste of time (and money) without recent results.
I had bloods last done 2 weeks ago, only appt I could get was afternoon and had already taken levothyroxine (100mcg) so may have elevated results.
I had vitamins tested with the exception of Ferritin as they missed that one off on the labels.
I was low in folate and Vit D so I am now taking Vit D /K2 (Better You-oral spray), Super B Complex and Berberine although I wasn’t on any supplements when last bloods were done as I had to stop everything prior to recent surgery.
T3 in October had decreased further to being under range although following hysterectomy in Nov this has now increased to slightly above range although cholesterol and liver enzymes are still elevated.
I have budgeted for the initial consultation fee although I would struggle to source private treatment after that as I had to pay privately for hysterectomy and it has wiped out what little spare funds we had.
May I am being unrealistic but I was hoping to present results to date to the endo to gain an opinion (on T3) and then with the support of GP persue this option within the NHS somehow.
I am also weighing up the options of waiting a bit longer for my hormones to settle further although that may mean commencing statins and diabetic medication and introduce more meds for my poor liver to contend with.
Within 8 months I have gone from one health condition to five and I am still trying to resolve the original one of Hashimotos to see if the other issues improve.
I am in a bit of a quandary and yes I am worried that it may be another waste of time and money.
I would perhaps consider waiting until January and getting full thyroid and vitamin testing redone after minimum of 6-8 weeks working hard on improving low vitamin levels
Thyroid testing MUST be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Ferritin test essential too
Waiting until January would give other hormones time to settle
Look at lowish carb re high HBa1C
High cholesterol is red herring and will reduce as thyroid is sorted
Thank you..., yes I think that is excellent advice and I will wait until the New Year..., my HBa1C has reduced slightly with reduction in carbs..., I follow a gluten free diet and low carbs although I have recently done some further research and cut back on a lot of other carbs which I didn’t realise were carbs!
I usually use the same brand of levo usually which is Actavis/North Star.
Since recent operation I have felt slightly better in myself and hopefully that might continue to improve. I will pay for private tests in January and then take it from there.
Yes-thank you..., I am on 100mcg so not Teva..., ..., I have cancelled the private appt and will get my bloods done again in January and rebook, thanks 😊
Regards t3, as far as I am aware only nhs endo can initiate the script. I believe the rmoc guidelines say private patients can just continue getting it privately. Hopefully those more in the know can confirm this if true. The id hate for you to go down private route but not be able to source t3 due to prohibitive private cost.
Most private endos also have an NHS clinic - so it's definitely worth asking if s/he prescribes lio in their NHS clinic - and if so, if they would accept you as a future NHS patient - and then asking the GP to refer you ... but some will only prescribe lio privately
Thank you.., she is unfortunately retired from NHS practice..., I am going to look into alternatives who are still practicing in the NHS and try this route-thank you
I went to see a private only Endocrinologist (no NHS involvement). My GP was very supportive. I chose private only as some private/NHS endocrinologists still just follow the NHS guidelines. My extremely respected private only Endocrinologist prescribed me T3 medication as soon as it was clear that I am a very poor converter T4 to active T3. I purchased my T3 medication through my private prescription snd sourced the T3 from Bennewitz in Germany. For my dose for a years supply costs me £60. Although this may change with Brexit. It’s not as expensive as you’d think. I thought it would cost £1000’s going private. I was wrong. In all I paid £650 including the T3 to get well. I was in a really bad way prior snd couldn’t sit up let alone walk.
My private only Endocrinologist doesn’t charge for the private prescription and he also doesn’t charge for a the odd email if I have a concern. He is also the most respected Endocrinologist in the country. All NHS Endocrinologists respect him. If you would like his details I could message them to you. Just let me know.
Thank you-this is so reassuring..., I would really appreciate it if you could message me the details please as this sounds really hopeful..., thanks again 👍
This is so encouraging to hear and I'm delighted you've had this breakthrough. I don't suppose you could DM me details of private Endocrinologist you saw ... I've finally hit rock bottom with NHS . All the best.
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