Just to say sometimes the NHS is fab. I posted a couple of weeks ago complaining about trying to get a balance of T3 and T4. I was feeling bit crap and sorry for myself. I was expecting to be told by my endo to alter dose to keep my TSH at 0.1 and not much else. I got some great advice and encouragement here. What actually happened was my GP arranged for T4 and T3 blood levels to be tested at different times to get a picture of the peaks and troughs of each in my body before and after taking levo and liothyronine. The endo then used this to give great support and advice on how to manage peaks and troughs and increased my T4 dose and said no problem with TSH at 0.05 on T3. Also advised to persist and be patient with getting to a good dose of T3. He also reassured me I could continue to have T3 on the NHS. I came out of the appointment feeling very happy. It really helped that I had learned so much from this site and took a list of concerns to the appointment, took my partner with me and was really clear about the help I wanted. It’s been a bit of a long journey for me so just want to say thanks for the support and wise advice I've received here and to share a positive experience rather than a winge for once !
I've never been offered an Endo referral. I'm currently taking levothyroxine + dessicated thyroid extract with the knowledge of my GP, and a consultant allowed a test, including fT3, but it was only five hours after my dose. My fT3 was slightly over range so I decreased my dose and was re-tested after six shivery months, under the same timing conditions. My fT3 had increased slightly, and I have another test request form for next year which I planned to book with a more reasonable time gap, with the aim of reducing both fT3 and the consultant's concerns. In the meantime I've been called in by my GP, and will point out the timing issue and that the local phlebotomist won't allow my fT3 to be tested, so I've been left in the dark. Realising I'm out on a limb, i don't want to rock the boat (or should it be a cradle?) and have made minimal demands on the NHS for appointments, so it'll be a shame if I'm viewed as bringing problems upon myself, for the sake of £1 in additional test expense. It's me who's voluntarily though reluctantly reduced my dose and endured months of shivering. Anyway, enough whingeing from me -- onward and upward for you!
Yes sometimes the NHS is fab and as an ex NHS employee I have met a lot of dedicated Doctors who care a lot for their patients. Unfortunately I haven't yet met any Endocrinologists who are "fab" the ones I have met have had a lack of knowledge when it comes to this disease. I only have to google my symptoms and up pops thyroid but a couple of consultants I have had dealings with have dismissed them as age related or because I am depressed. I once walked out on one of them because he offered me some counselling for a TSH of 9 because he hadn't been monitoring my medication properly. I will now get off my soap box. Just to add that I am pleased that your treatment is going well.
Very balanced, for a soap box! Always good to get a view from the inside. I have met lots of kind, considerate and caring people in the NHS and many quite the opposite, just like in all other areas of life. I hope you too can find a good one and get some help.
It can be fab at times but sadly this is very much a matter of luck than as a result of good judgement/ management in the NHS. I expect you will have a few PMs asking for names of endo and GP surgery by those not quite so lucky. Good new is always good to hear.
This is just me being cynical, and I'm really pleased that you are getting all the help you need, but do you think it has anything to do with the fact that your male ( I hope that I've got this right, I'm going by your username!) women seen to be fobbed off consistently by both GP's and endocrinologists and their symptoms are accredited to everything but their thyroid.
Many of us are denied testing for T3 levels and even when we present blood tests of our own suggesting we do not convert T4 to T3 we are still denied any T3 on the NHS despite still being symptomatic on T4 alone.
I'm glad you are being treated well and I hope it continues but I think understanding and knowledgable GP's and endos are hard to come by on the NHS.
It’s horrible that so many people have awful experiences with health services. In a way I wasn’t writing to say he was an exceptional endocrinologist. I wasn’t keen the first we met and I moaned about his lack of support. In my last post I was ready toJack in T3 cos I had so little advice on how to get the right balance.
My post was to share a positive experience for once as mostly I’m either complaining or wanting advice on some symptom of result. My main point was to say thanks for the support here. It helped me move from knowing nothing about my condition to being in a position to prepare for an appointment and to understand I needed work hard at getting treated properly and to establishing a collaborative and realistic relationship with the range of health care workers I see. I didn’t just have a great appointment out of the blue. I took advice from posters like #Shaws, #greygoose and #seasideSusie and educated my GP and came to understand I’d need to work collaboratively with my GP to get the help I needed. I was turned down for initial referral to an endocrinologist and only got seen because I got support from psychiatry that I wasn’t a hypochondriac. The first step for from endocrinology was more T4. I also came to understand that medicine is a very crude science and once my TSH was ‘normal’ from the medic’s point of view I had a set on non urgent quality of life complaints that didn’t pose immediate risk. Once I understood that this wasn’t dismissive it’s just that medic’s offer only limited form of help I could look for support and advice from sources like thyroid UK and lower my expectations of the medic’s. Paradoxically doing this helped slot with working with medic’s.
My approach this time include:
1.Posting to this site and getting lots of info about using T3 from administrators and others here
2.Venting on this site
3.Being clearer about the outcome I wanted from the appointment
4.Reading the literature on suppressed TSH, dosing with T3, treatment refractory hypothyroidism
5.Being aware of what has evidence and what doesn’t an accepting this would determine the medical view.
6.Trying to be collaborative and acknowledging help I’ve valued (I was stroppy last time so tried my best to take the experience of less personally – I tried not to beg and demand help this time)
7.Bringing a typed list of questions and a summary of my symptom diary and dose history
8.Accepted that it was legitimate to explore if I had chronic fatigue syndrome or fibromyalgia and ask for assessment for these to rule them out.
9.Bringing my partner and checking if I’d forgotten to ask anything.
10.Agreed a plan and follow up and asked for this in a letter.
11.In the end I know I can pick up T4 in Spain and that I’ve been able to get T3 in Greece and I can pay for tests so although I don’t want to self manage I wasn’t totally at the mercy of the NHS and could self manage if I hit a brick wall so I could relax and stop being desperate for help like I was in the beginning when I thought only medic’s could help me.
It took me two years to get to a place where I could do this. Yes I was lucky to have good clinicians, and yes being white and male may have helped but it took work and help from a lot of women on this site to get me to a place where I could manage to do this. So thanks to all of you who have helped me and I’m sure I will be back moaning about feeling over medicated soon.
... To the Nhs being wonderful sometimes! Not yet happened for me in regard to thyroid problems, but it is currently being wonderful for one of my sisters who has had a major accident and is in hospital.
I agree that some people in the nhs are amazing but they are let down by others. I’m very fortunate to have an amazing Gp and a fantastic endocrinologist, both of whom don’t mind answering all my questions, emails etc and the Gp saw me every week sometimes 2/3 times a week prior to my adrenal insufficiency diagnosis without a single complaint. I honestly don’t think I’d be alive today without his persistence!
My problem now is keeping ahead of the local ccg who are threatened to take away my t3 prescription 😢 x
Really good to have a positive story (especially as I've just had a hopeless appointment myself and am flat as a pancake!). Any chance of a PM of who and where, just in case? Much appreciated and continued improvement to you.
I've come across one surgeon in the NHS I would say (with one or two reservations) was mostly good at his job. And my experience of him had nothing to do with my thyroid.
My experience of most staff in the NHS is that they lie to patients and fob them off constantly. And what they write in medical notes for all the staff that come after them to read is a farce and a travesty of the truth. And they never admit they are wrong.
Amazing! I think the last time I was impressed with NHS was hospital audiology department who got me hearing aids with no fuss on the same day as my appt. Before that, the last time I was satisfied was about 1979.
I am so pleased for you Mike. Clearly you have fought a long hard battle to get to where you now are. I have been underactive for 56-57 years. I was very well treated by a series of NHS and HM Forces doctors for many years. Then someone decided to put me on levo. A few lies were told until I realised I was never getting an honest explanation. I became so symptomatic my life was miserable. An enlarged tongue got so bad I was unable to eat. Still I was assured I most certainly did not need to see an endo. A range of blood tests showed nothing was wrong, therefore I could not have a thyroid problem. A reduction in levo dose was recommended. Anxiety was suggested by another male GP who did not need to see me to make this decision.
My thyroid function was destroyed by radiation therapy in the 1950s, yet here was a GP telling me thyroid function had improved. We met about half a dozen times over 2-3 months each time I advised I would be self medicating if the NHS refused to look further into my problems.
This I have done, when GPs continually tell a person they are misinformed/ no nothing about condition/ do not accept how caring a aGP is/ are frankly thinking too much about them self/ getting neurotic/ imagining things suffering from mental health issues etc etc. for 15 plus years, it seems a real pain.
Now I may try your policy and perhaps I too will be allowed an endocrinologist referral and how knows NHS treatment which works as it did for many years before. Dont hold your breath! A sex change probably needed. x
That sounds like a terrible experience, if it's any consolation I initially got sent to psychiatry as a neurotic health anxious man when I first presented. So equal opportunities worked for me when it came to being dismissed as mentally ill. 😀
It’s true the NHS is sometimes really wonderful. I’m living in the US at the moment and it is so expensive and such a hassle here; the NHS was superb for emergencies, primary care, and routine illnesses.much easier and better. But I could never get consistently good specialty care that one could count on, and it was slow w/long waits for appointments (often a month or more!) and after much hassle, then the endo or other specialist was not willing or knowledgeable enough to help. (maybe just bad luck or being female!) in the US the specialist care is extremely good with many options easily and quickly available. Expensive, though. Anyway I still think the NHS is great; a civilized nation takes care of its people. Wish the US would keep its high powered specialist care but learn from the NHS how to handle all the rest from cradle to grave. I ♥️The NHS!
Yes the NHS is a mixed experience, if you urgently need something it can be amazing to get free care at the point of delivery but beyond that it can be hit or miss. I have relatives in Ireland where you have to pay about 60 euro to see a GP and pay about 100 to go to a&e I really appreciate free repeated access to my GP and free medication. Just needs everyone to be able to access the same standard rather than postcode lottery
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How do I get the NHS endo to prescribe T3?
Yikes, the NHS endo just called and I answered
Blood test advice for NHS endocrinologist appointment 
Two Endo appointments, one private, one NHS, do I see both?
