just an update on my previous posts “ Nurse phone call update” & “Thyroid test results”
I have received an appointment to see a private endocrinologist. It is not until 28th March, but I’m on a list in case he gets a cancellation so I can go sooner.
I will be taking a list of symptoms with me which will include my high cholesterol.
Can’t wait as I’m feeling pretty rough at the moment.
I feel like I haven’t got any zing and have no feelings of well being.
Can’t get excited about anything. I usually have lots of hobbies but not interested in any of them at the moment.
I feel like I’m in a dream. I sleep for 7-8 hours a night but I’m still tired during the day.
I just want to feel me again, so roll on 28th March. I know it’s not going to happen after one consultation but at least I’ve taken that step in the right direction.
just caught a glance at results from 6 days ago - couple that with symptoms- clearly under medicated. NICE guideline dose 1.6 ug kg for Levothyroxine (equates to 10ug per stone). I’m 15 stone (yes I still have to attend to that 😂) but I’m on 150 ug. TSH below range, no symptoms either hypo or **over medicated. Both my Free T3 (FT3) and Free T4 (FT4) are within range.
**I refuse to say hyper as it mixes terminology and further feeds into the confusion doctors have with thyroid issues. The most they would get me to agree to is ‘hyper-like’.
there are two pinned posts I would suggest might be worth read
NICE and NHS guidelines-the useful bits.
Low TSH
Post by tattybogle - brilliant resource for papers on low TSH.
28 March is a long time to wait feeling ill. If I was you I would take the 25mcg additional Thyroxine and then submit a repeat prescription request to your GPs surgery telling them when you will be running out. Do not explain why you are running out early. They will know you must have them and probably won't even question it. If they do just tell them you gad to increase the dose with no apologies or excuses. Good luck.
Why does it matter if they notice? You know you need additional thyroxine. It is clear from your results. If you run out of thyroxine they are obliged to prescribe it because it is life sustaining. They might moan a bit but why care? Do what is right for you.
I hear what you are saying but, If I ordered more levo, before I’m actually due another prescription, they wouldn’t put it through to my chosen pharmacy.
I've list my meds a while ago. Threw away thinking empty pack . They gave me more ... You shouldn't Need to fib , but .. ........... sometimes needs must ?
Love purple take a look at the posts I have made under my profile- there are some self advocacy posts 😉
I brow beat the various doctors I engaged with, providing a report and references to go and fact check for themselves. I think it is more likely that they couldn’t be bothered to read through everything I presented them than they actually read it and understood what I was trying to convey. Either way, they upped my levo dose several times until I was on a therapeutic dose and I stopped badgering them at this point. It would be nice to think they had actually read the information I provided them, but at the end of the day the outcome was more important than how we got there…..
Similarly to you blinding the GP with research and guidelines, I wrote to the GP trying to reduce my dose( based on TSH) that I have Central hypothyroidism and need FT4 monitoring before dose adjustment - surely she read it in my notes?
Actually I may have Central, but it’s never been diagnosed, so will not be found in my notes, but of course it was easier for GP to reinstate my dose than read my notes!
(re: getting more than your prescription suggests - my surgery refuse to give a new prescription until seven days before it’s needed. So I agree, a fib is needed if you want a bit extra temporarily.)
I agree Bearo more likely not reading your report, realising to do so would take longer than 10 minutes. I always say with regards to central and primary hypothyroidism they are not mutually exclusive and also with regards to central hypothyroidism, rare or just rarely diagnosed? 😉 the protocols they work to make it easy to miss hypothyroidism unless you fit their crude diagnostics.
You could always "mislay" a packet, pretend to lose it or say you took it on holiday and left it behind. Sometimes we have to be a little creative and think outside the box.
I'm awful 🤥🤣... I always recommend to everyone getting an early prescription by whatever means you can so you have wiggle room and a little back up when they let you down, takes away the monthly stress... I also recommend getting a two month script if you can but I think they are getting more resistant to those... but if you have to travel any distance to collect it's worth doing 🤗
My GP surgery insist on me taking in proof of my flights now when I ask for extra meds due to holidays. They never did this until last June
after I had argued with the doctor about needing an increase in Levothyroxine after being left on 50mcg for five years. So twice since then I have had to take in a print out of my booking!
Glad you have an appt, and fingers crossed for a cancellation.
You can get a result from a first appt if Endo is helpful.
Just for info only - this is what I did before my first NHS Endo appt - I’m not saying you should do this……. It is only what worked for me.
For myself to take with me I wrote a summary including age, height, weight, BP followed by meds list and history of all meds.
I then listed symptoms affecting my QOL, ability to work, etc., and stated that I sought specialist help to relieve symptoms and improve my long term well being.
When I was happy with this, I rang the Endo’s secretary and asked if I could please email my info ahead of my appt to go onto my referral notes, so that it was available ahead of the appt if needed - which she was fine with.
Don’t be scared to ask to do this- I just kept the conversation friendly and said that I understood clinic appt times are limited so it could be helpful to send it - I got no resistance, and if anything it was welcomed.
When I got to the appt, he had read it (!) and it avoided the awkward “what can I do for you?” opening. It was a bit of a tussle but he agreed to trial T3. My T4 was reduced too far, but I went along with it as I knew that once he was monitoring it, he would agree with adjustments if I presented him with symptoms / which he did. Three years on we have now just moved to 6 monthly blood tests -and he issues 3 monthly lio prescriptions.
I have never seen him again since that first appt. Every year I get a system generated letter for an appt with an unnamed Endo and I ring the secretaries and ask them to cancel it and refer me to my. Endo - they do this without any problem, send me a blood form and I have a call with after results are there.
Arm yourself with knowledge to support your wishes - but keep any written submission brief and easily read - IF you decide to do that.
I’m hoping that if this private endocrinologist can sort me out I will stick with him for future blood tests etc.
It was the same with my mental health. The NHS were hopeless so I had to take the private route and was given a diagnosis within 2 days and put on the correct medication & therapy. I’m still with my private psychiatrist.
We shouldn’t have to go private really should we.
We’ve paid our taxes and should get the help we need from the NHS, but if I hadn’t done this for my MH, I don’t think I would be here.
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