Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 Does anyone have experience of invoicing primary care trusts for the cost of private medication? After my overly long ramble yesterday, I have decided that I may write to G.P. to formerly voice my concerns and say that if I'm unable to get a consultation and synacthen test urgently, I will arrange private mediaction and invoice NHS. (I forgot to say that the NHS endocrinologist refused to see me in Feb as I had been diagnosed with m.e.) So I think I've got a strong case. all best, Alison The GP won't prescribe HC herself and wants > to send me for a short synacthen test (which of course is exactly what > you said Sheila:) and refer me to a consultant.The trouble is without > NAX or HC, I really don't think I'm well enough to even get to hospital > to do a short synacthen test - it'll just make me too ill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 Hi Alison Many doctors will give a diagnosis of ME to patients who present with normal thyroid function test results but who still complain of symptoms because they don't know of any other 'diagnosis' they can give - many doctors will also give fibromyalgia (FM) and chronic fatigue syndrome (CFS) for the same reason - yet all three have been found to improve with thyroid hormone replacement therapy, especially using T3 (the active thyroid hormone). I am not sure where you would stand should your GP refuse you a medication such as hydrocortisone and you getting it through a private prescription and then trying to claim it back. From the GP's side, as they are not specialist themselves, they are within their right to first refer you for a short synacthen test and to await the result before going on to write you a prescription (or not). Your GP should however, assess whether your case is considered an emergency (if he feels you are suffering with 's Disease or Cushing's Syndrome which requires urgent treatment) and if you believe he has not expressed this urgency on the information he has passed to the endocrinology department, then you may have a claim. However, before you do anything, make sure your GP has done everything within his power before starting any claims. Contact the Department of Endocrinology (or the Outpatient's clinic) to find out exactly when your appointment will take place and tell them you will take any cancellation at very short notice. You can also express your sense of urgency at that time and tell them you are too ill to be able to attend on your own and may need an ambulance to take you. Also, it is not advisable that you self diagnose and self treat without a doctor monitoring you and without such a doctor, I cannot see that any such claim would be considered valid by your local PCT. You have to show that you have done everything humanly possible to get a diagnosis and any needed treatment as a matter of urgency yourself too - and not just leave it up to the doctors. Luv - Sheila Does anyone have experience of invoicing primary care trusts for the cost of private medication? After my overly long ramble yesterday, I have decided that I may write to G.P. to formerly voice my concerns and say that if I'm unable to get a consultation and synacthen test urgently, I will arrange private mediaction and invoice NHS. (I forgot to say that the NHS endocrinologist refused to see me in Feb as I had been diagnosed with m.e.) So I think I've got a strong case. all best, Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 First Alison, if you are down for an appointment to get the short synacthen test done to check out your adrenals, you should not be taking any HC for at least 6 weeks before the test - the results will be flawed and the test will be a waste of your time and the hospital staff's time. I think what you need to do is to write a letter to your GP and list all of your symptoms and signs. ’s disease is not usually apparent until over 90% of the adrenal cortex has been destroyed, so that very little adrenal capacity is left. This can take months to years and is known as primary adrenal insufficiency. Symptoms of the disease, once advanced, can include severe fatigue and weakness, loss of weight, increased pigmentation of the skin, faintness and low blood pressure, nausea, vomiting, salt cravings and painful muscles and joints. Because of the rather non-specific nature of these symptoms (like the symptoms of hypothyroidism) and their slow progression, they are often missed or ignored until, for example, a relatively minor infection leads to an abnormally long convalescence which prompts an investigation. Frequently, it is not until a crisis is precipitated that attention is turned to the adrenals. Write that you are too ill (and getting worse) and would be unable to get to the hospital yourself and that you would require an ambulance and ask how this would be arranged. Read the information about 's here http://www.addisons.org.uk/info/diagnosis/page1.html and this may help you get over the seriousness of your condition as you see it right now. Ask for an emergency referral for the short synacthen test, but you would need to stop the HC and not start on any NAE. Ask for your letter to be placed into your medical notes in case you need to refer to this later. Send a copy to the Head of Practice. I have sent the doctors list to you Alison. Luv - Sheila To fill you in - my adrenals are in a state (both Sheila and Dr P have said I'm close to 's). I ordered some HC on the internet and have tried 10mg both yesterday and today - with a real difference. Normally I am bed bound most of the day. But this morning I could actually go out and garden for 20 minutes. Today I went to see my GP and explained my concerns about 's. I didn't have the guts to say I've already tried HC. The GP won't prescribe HC herself and wants to send me for a short synacthen test (which of course is exactly what you said Sheila:) and refer me to a consultant. The trouble is without NAX or HC, I really don't think I'm well enough to even get to hospital to do a short synacthen test - it'll just make me too ill. I don't think the GP realises just how ill it'll make me - I become dehydrated, dizzy, nauseous, etc. But she insists that I need it (although I've got the cortisol saliva test) and that it has to be done because if I'm 's, I need to be shown how to use injections, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 Many thanks Sheila, list received and I'm off NAX and HC. feeling terrible so hope it's worth it:) all best, Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 If things get too bad, then get somebody to take you to A and E - you will probably get the short synacthen test done that way and not have to wait for an appointment. Where there's a will……. Luv - Sheila Many thanks Sheila, list received and I'm off NAX and HC. feeling terrible so hope it's worth it:) all best, Alison ___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 A good idea - thanks. Btw don't know how you manage to keep up with these replies so well - and planning a conference! I wish you all every success with it. Wish I could be there - another time I hope Thanks Alison > > If things get too bad, then get somebody to take you to A and E - you will > ___ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 If things get too bad, then get somebody to take you to A and E - you will probably get the short synacthen test done that way and not have to wait for an appointment. Where there's a will……. Hello Alison, Just to add to Sheila's comments .... if things did get from bad to worse, then do not hesitate. Make sure you drink plenty of water with a little (sea)salt in it – and, if nobody is available to take you to A & E, call an ambulance... this way you'd get to the head of the queue ( J ). Tell the staff that your doctor suspects 's and this may be an adrenal crisis, then the hospital staff will know to check the electrolytes straight away and put you on a drip and they should do an SST there and then. Hopefully it will not come to an emergency and you will be given an appointment for an SST soon. When you get offered an appointment, please make sure that it will be for no later than 9 am, and also ask your doctor to not just request an SST but also a basal ACTH measurement (this will make it easier to differentiate between primary or secondary 's, if it came to it). It might not be mentioned to you, but please make sure that you fasten for 12 hours before the test (except for water) and please arrive at the hospital in good time for the test. Allow about half an hour extra, so you do not have to rush at any time.... rushing around temporarily elevates your basal cortisol level, and you do not want that for the test. You want the pre-cortisol figure to reflect your true adrenal status. Also, please make sure you will lie down for the duration of the test and do not get up and walk about – I have heard stories where the patients just got up and went to the cafeteria for a quick cuppa in between blood draws - so please don't - just stay put J Here is a link that will explain the procedure –http://www.dundee.ac.uk/medther/tayendoweb/images/short%20synacthen%20test.pdf Please also note that ANY steroids, sex hormones or HRT treatment would also invalidate the test – so make sure you are off everything for the appropriate time. – The only exception to that rule is Dexamethasone, which could be given short term before an SST without jeopardizing the results if you can't function at all without steroids. Good luck and please let us know the outcome. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2011 Report Share Posted April 16, 2011 Hi , this is so helpful - can't tell you how grateful I am. (as you can imagine I've been in tears a lot since yesterday). I certainly need to calm down before having the test done - I'm finding the constant negotiating with doctors v stressful. I won't be walking around at all - I'll just be too ill to do that! A bed in the corner will do the trick.I will let you know how it goes and thanks again for the really good practical advise. All the best Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 Following all of your useful help, I felt so awful last weekend that I took myself off to A & E on Monday. I was admitted overnight and given a short synacthen test - It wasn't unfortunately first thing in the morning but they argued that this didn't matter ??? ! - at least it's a sort of result and they included the basal ACTH you said I needed - thank you all for helping me to get this far. A milestone! As I thought might happen, they dismissed the idea of adrenal problems in spite of the cortisol saliva report I showed them together with my list of symptoms. I haven't the SST results yet and won't get them for a few weeks when I have to go back to see my GP. It's beginning to dawn on me that there are two very different sets of methodologies and diagnosis - the one with doctors that are generalists and don't seem to solve peoples health probs - and the other group with expert gland doctors like Dr P who don't just go by blood tests (I gather he tends not to rely on the short synacthen test anyway) and do solve problems.I'm stuck in bed most of the time, awful back ache and really at the end of my tether. I know I need to go onto hc whatever the local doctors say and whatever the SST results are. It could be 8 weeks or more before I got an endo appointment even if the SST results suggested I need it - which according to Dr P they may not.If I wait for the NHS, I'm going to be bed bound like this and even more ill in a year's time. I'm at the end of my tether - can't wait any more. I guess I'm just plucking up courage to start self medicating. My dilemna is really when I choose to start HC.I have got regular appointments with Dr P. I'm just very worried about how and when I break it to my GP and also losing her trust. To be honest, I want to start off HC tomorrow as I can't bear being like this anymore. (The consultant at hospital said as I've been like this for a year, a few more weeks aren't going to matter and maybe I should go back to the ME specialist - aaargh.)I probably haven't explained this properly but really needed a sounding board. Basically I feel I've satisfied NHS requirements by having the test, I can't see what difference the test results are going to make to my overall intentions and think it a good idea to start HC straight away - although scary because of GP's views. Phew.Views much appreciated - lovely weather - could have done with not being in hospital all day! Hope some of you are enjoying it. Best wishes, Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 Hi Alison I'm really sorry to hear you are having such a hard time of it at the moment, especially when the weather is so nice outside & you can't enjoy it - I know how frustrating that is. I assume that Dr P is advising you to start HC asap? I only have my own experience and hope it may help a bit: HC really helped me to feel a lot better. 12/18 months ago I was clinging onto part time work by the skin of my teeth, feeling like death at work, coming straight home to bed each evening and spending all weekend in bed. My GP was sympathetic but told me I would probably have to give up work. I put it off for a bit, trying Nutri Adrenal but I wish I had started HC earlier - and your adrenals are in a much worst state than mine. I'm not 100% well yet, still sorting out the thyroid/iron side of things but I'm much better than I was then and this is due to me taking HC for the past year. I'm still working part time (and find it much easier most days) and only occasionally have to rest in bed for a few hours at the weekend, and never in the evenings. It does take a lot of patience, Alison, something I'm not good at (!) but looking back I can really see how much better I am. I was concerned about my GP's reaction too and was quite lucky in that I didn't need to visit a doctor much at all during the first 9 months of self-medicating HC. When I did have to, I decided to see one of the other GP's in the practice re minor ailments such as throat infections etc. I just went in quickly, grabbed prescription and ran out again!! Eventually, I was feeling well/strong enough to speak to my usual GP and made a double appointment and took a deep breath ( & Dr P's book with me for strength!). I said I was feeling much better and told her I was taking HC & thyroid meds. I explained pretty much everything that had happened over the previous 9 months. She was a bit surprised about me self medicating but admitted that I looked a lot better than the last time she had seen me ( and very noticeably so). I offered her Dr P's book (which she accepted and read for a few weeks) and asked if she could help. She has happily prescribed me Armour ( & T3) but says she cannot, unfortunately, prescribe the HC, although she does admit it has made me better. She was concerned about decreasing bone density and agreed to check it - the results came back showing I have nothing to worry about there. Since then my GP has recommended other patients read Dr P's book too. I am wary not to patronise her but ask for her advice and assistance, asking us to work together to get me 100% well. Sorry for the long ramble, Alison. I hope it may help you a bit? Hopefully, others may be able to offer their views/experiences too. Keep asking questions. I have found this forum absolutely invaluable (and still do!), and Dr P is a gem. Best wishes Liesha > I guess I'm just plucking up courage to start self medicating. My > dilemma is really when I choose to start HC.I have got regular > appointments with Dr P. I'm just very worried about how and when I break > it to my GP and also losing her trust. To be honest, I want to start off > HC tomorrow as I can't bear being like this anymore. Views much appreciated - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 Hi Alison, The best advice I can give you is to not waste anymore of your life hoping the NHS is going to come good for you in the end.There is always a chance they might,but the overwhelming reality is that they wont and I think deep down you already know that. I passed two short synacthen tests on the NHS despite being told by Dr P and Dr Hertoghe in Brussels that I had a severe adrenal insufficiency.Like you I wanted the help and the validation from the NHS so badly.In many ways I think I actually made myself more ill with stress trying to get them to acknowledge that I was very ill.But no matter how hard I tried it seemed to make them resist and refute it all the more. Looking back over everything I went through courtesy of the NHS it damn near killed me.If you do return to your GP for your SST results the likelihood is that they probably will be normal.(In a way I hope for you that they aren't!)That way at least you wouldn't have to pay for your H/C. I sense from your post that you are still worried about Hydrocortisone.Please don't be.I was on H/C for 4years at a dose of between 20 -30mg and last Autumn I weaned myself off it.Yes OFF it.Am I well? Not entirely but I am certainly coping without H/C and not bedridden like I used to be.I would have no hesitation in starting back up on it if I felt I needed to.I think it gave my adrenals the rest they so badly needed and despite Dr H saying I would probably have to be on it for life I am happy to have proved him wrong! What is the worst that can happen Alison? If you feel better on the H/C as you say you do a lot of that horrible pain and inflammation will subside and you will have a bit more energy to function.If you remain as you are the probability will be that you'll continue to suffer needlessly. Don't wait any longer.The sun is out.Enjoy it. Best wishes Peary >>> I probably haven't explained this properly but really needed a sounding> board. Basically I feel I've satisfied NHS requirements by having the> test, I can't see what difference the test results are going to make to> my overall intentions and think it a good idea to start HC straight away> - although scary because of GP's views. Phew.Views much appreciated -> lovely weather - could have done with not being in hospital all day!> Hope some of you are enjoying it. Best wishes, Alison> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Hello Leisha and Peary, Hearing your experiences is just what I needed and has confirmed what my gut instinct has been telling me. After a stressful 2 days in hospital, I think I'll give my body a gentle day today and start building up HC from tomorrow. That'll give me chance to run through all the risk factors in my head - like making sure I have a stock of HC in case of postal problems, etc. And I imagine it's important that all family and friends know about it, in case I need to stress dose. As far as GP goes, I think I'll wait a bit, as you said, until I feel mentally and physically ready to go through it with her. The whole situation is slightly complicated by an application appeal for an early pension (as if I need that !) - but I must just keep that slightly seperated in my mind. My health comes first. It is galling knowing that I will probably have to pay for HC when money is rather tight to say the least. But again, I don't think I have any choice and I want my life back even if I am even poorer! Yes Dr P is giving me all the appropriate advise and full support. Patience has never been my forte either, Leisha - I'm a doer - probably why my adrenals are in the state they are! But it's not so bad having to be patient if I know there's a clear goal with likely results. Encouraging to hear that you weaned yourself off, Peary. It makes the idea all slightly less scary - though I am pretty bad and suspect I may well be on HC for life. Well, thank you both again and have a good day. Best wishes, Alison > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Hi I haven't the SST results yet and won't get them for a few weeks when I have to go back to see my GP. You don't have to wait a few weeks to get your SST results from anybody, these belong to you and you can ask for them as soon as they have been received. Write to the Endo's secretary or the department where you had the test and ask them to send these results to you, together with the reference range as soon as they have received them. Doctors cannot withhold any test results under the Data Protection Act 2009.Slip in a stamped addressed envelope to enable them to do this and once you have received them, post them on the forum so we can help with the interpretation. You are entitled to see these so you can do whatever you need to understand them before you next see your GP. I guess I'm just plucking up courage to start self medicating. My dilemna is really when I choose to start HC. I have got regular appointments with Dr P. I'm just very worried about how and when I break it to my GP and also losing her trust. To be honest, I want to st aren't going to matter and maybe I should go back to the ME specialist - aaargh.) Leave this decision in the hands of Dr P - and trust him, he knows what he is doing and has helped hundreds of people get back their normal health after the NHS failed them. Once you have seen Dr P and been guided by his recommendation and found that whatever works, whether Nutri Adrenal Extra or Hydrocortisone, only then write to your GP. This is not just a case of doctors losing their trust in their patients, this is also their patients losing their trust in their GP = especially when they are refusing to listen to their patients or accept the results of accredited laboratories from outside of the NHS. Doctors and patients have to work together, listening to each other and reaching decisions together. Your doctor is there to help his/her patients regain their health, without patients they would not have a job. Think what the most important thing is right now, not upsetting your doctor or getting back your normal health. If your doctor is that uncaring, then you really need to consider whether you still wish to stay with such a doctor or find one who does care - and there are a lot who DO care about their patients and who will do whatever is necessary to make them well again. I probably haven't explained this properly but really needed a sounding board. Basically I feel I've satisfied NHS requirements by having the test, I can't see what difference the test results are going to make to my overall intentions and think it a good idea to start HC straight away - although scary because of GP's views. Phew.Views much appreciated - lovely weather - could have done with not being in hospital all day! Hope some of you are enjoying it. Alison, this one paragraph alone says it all. Go by your instinct. If the NHS has failed you through their lack of recognition of 'low adrenal reserve' because they ignore tests from other specialised laboratories and your NHS doctor is unable to help you further, then there is absolutely no option but to take your health into your own hands, or put it into the hands of a doctor such as Dr P. Today is Dr P's telephone day - you have his number. Get on the phone to him right now to see what he recommends for your next move and be guided by him. You are not alone, believe me, there are over a quarter of a million sufferers of the symptoms of hypothyroidism in the UK alone who are being totally ignored by the NHS because they are giving them the wrong thyroid hormone. I bet there are probably half a million who are suffering with low adrenal reserve who the NHS are ignoring too. TPA has helped such people, so read whatever is necessary (in our FILES section under 'Adrenals') and we will do what we can to help you too. Luv - Sheila Best wishes, Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Thanks Sheila,> You don't have to wait a few weeks to get your SST results from anybody,> these belong to you and you can ask for them as soon as they have been> receivedWill get a copy and get back to you. Do you know whether I am entitled to get the results free of charge? NHS seems to be charging now for the smallest thing. (I had to pay £30 the other day for a very badly completed form done by my GP.)All the best Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Hi alison, docs are allowed to make a 'reasonable ' charge for copies of your file in writing. I just ask when I go to see my doc and write the results and ranges down. I find that if I ask receptionist for the results if I say ' I just want the numbers, I don't want any comments on them' I get the numbers without problem. thyroid treatment From: picnic@...Date: Wed, 20 Apr 2011 09:49:15 +0000Subject: Re: A bit of a low moment Thanks Sheila,> You don't have to wait a few weeks to get your SST results from anybody,> these belong to you and you can ask for them as soon as they have been> receivedWill get a copy and get back to you. Do you know whether I am entitled to get the results free of charge? NHS seems to be charging now for the smallest thing. (I had to pay £30 the other day for a very badly completed form done by my GP.)All the best Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2011 Report Share Posted April 21, 2011 Thanks for this, . Will keep you posted. All best Alison Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.