END OF ROAD WITH NHS

I have a long story where in the past I saw Dr P and ended up taking 2 Grains of Armour Thyroid and 2 Cytomel, plus adrenal supplements. The snag was that I didn't have official diagnosis. The only way of cutting the controversy was to do without tablets for a month and make myself ill. I was lucky in that the TSH was raised and the NHS was happy to treat.

However a year on, I have hit the end of the road with those appointments but feel that going off past experience more health improvements is possible. It seems to be impossible to challenge the NHS to give me back my level of functioning from a year ago.

TSH 0.02 (0.35-5.5)

T4 16 (10-24)

T3 4.4 (3.5-6.5)

The above results are current, having used 75mcg Levothyroxine and 20mcg T3. Both officially prescribed on the NHS and the latter divided into two doses.

The problem was the low TSH and the consultant couldn't increase my levothyroxine or T3 despite that he agreed I am still not well.

All I want is to be official with my diagnosis and treatment. Granted I trust DR P to get me well as I didn't have any bad experiences with the tablets. However I just think it helps in the long run if I am official and have consultant backing.

Any ideas where I can go with this, in order to aim for optimum health. Perhaps there are other doctors who are registered that you do not need a GP referral for? Any ideas about consultants, either NHS or private, who have clout and who can recommend the GP can change medication?

The NHS seems to put me in a situation where I have to be happy about feeling half-well and that it is a good improvement than how I was at the start... After all, what's wrong with aiming for optimum?

Anyhow any input about doctors held in high regard welcome.

Cheers Fiona.

10 Replies

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  • Fiona,

    You have written an excellent description of the bind you can get into when getting non-standard treatment. And I think that in so many ways you are sensible to get 'official' - I keep worrying about non-official people who end up in hospital.

    But I have no real answers, sorry.

    All the best

    Rod

  • So have you heard bad experiences where people have been self medicating or something and ended up in hospital due to it? Or do you just mean conflict with other medical staff who don't understand why the patient is using Armour or T3?

    Anyhow I made a decision and found a consultant to see in a couple of weeks. I will be paying to a BMI Priory hospital. I had a good chat with his medical secretary. She was happy for me to send an e-mail to outline my dose and current results.

    I have booked in because I was told some people are already on Armour and others already travel from afar to the clinic. He wants to know blood results including TSH T4 and T3. So you would assume they are honest enough to only book me in knowing my situation and assuming they would be able to do something.

    I expect any consultant may swop and change their minds with regards to T3 or not be as good as they used to be, due to the controversies and guidelines, but I figured with private there may be less chance. Plus they were the only ones that were willing to have this sort of communication with me first.

    Fiona

  • Fiona,

    Sorry - very poor expression by me. I was meaning people on non-authorised regimes who, for whatever reason, end up in a hospital where they cannot continue with that regime. For example, if taking desiccated and hospital staff stop the person taking it under a "Patients must not have their own medicines" policy - without regard to the effects of that policy.

    Very pleased to see you are making some progress. Do let us know what happens.

    All the best

    Rod

  • This was one of the reasons why I am trying to be as official as possible. Dr P used to treat me and I used to buy my own Armour and Cytomel online. But of course the diagnosis wasn't official and none of this was strictly speaking prescribed. Although I wasn't admitted to hospital, I encountered a lot of problems with other health professionals. eg physio who thought that he is mis-diagnosing people and operating with no evidence, same for GPs who wouldn't believe I had a thyroid problem "based on some urine and saliva tests".

    Having had to stop medication for a whole month and make myself ill (a year ago) I am still not back to where I was before. So there is no way on earth I would stop again for anybody, once is one thing to get diagnosis, but I didn't expect to have to give up all this time and a year on still not be back to where I was.

    Your examples of a potential problem is my main reason (finances as well as a main reason) why I want to eliminate controversy and get peace of mind for the futre.

    In a way it's my last ditch attempt to get better official NHS treatment. All being well, this private consultant will recommend to the GP a medication change. I am sure the GP will listen to a consultant, but not a private GP or DR P you see.

    Fiona

  • Hi Fiona,

    It will be interesting to see how you get on when you do see this private consultant. My question is though - what if he does not give you T3 or a T3 containing thyroid extract - you say you will not stop for anyone again as not taking the right stuff made you feel very ill and you sound as if you have gone backwards.

    I wish you all the very best but do post and let us know when you have seen the prvate Endo. It is always good to have a positive story to give us all hope.

    S

  • Hi Fiona, Unfortunately most docs/endos treat you by your TSH and when you take T3 it suppresses the TSH.

    Looking at your results (I am not medically qualified, just my opinion) you are undermedicated because your Free T4 needs to be at the top or even just above the range and your Free T3 could be higher too.

    I am soon to be in this situation as I have recently been adding T3 (under an Endo) and I know that my TSH will be too low for his liking.

    Unfortunately going private doesn't always help in this thyroid controversy and it is so difficult to find out whether a consultant can help you before you see him/her. I do hope that you will not be disappointed. It will be great when a lot more people review their hospitals on this site so that we can have some guidance.

    Where abouts in the country are you Fiona?

    The other thing that some people do (and I am not suggesting that you do this) is to not take their medication prior to a blood test so that the TSH rises a little. I am one of those people who immediately feels worse if I don't take my medication though.

    Which symptoms are you left with? Have you had your vit D, vit B12, ferritin and folate tested?

  • Stacey, I guess it would be like a worst case scenario if this private appointment turns into a waste of time. All I can do is hope, but I reckon that any consultant is a gamble with all the controversies. Say perhaps some used to be really for T3 and in the way that Suze said, would have wanted your T3 and T4 to be at the high end of the brackets, and who knows if the guy I saw isn't what he was or something. But I feel that you may risk that with anybody at the moment.

    There has to be scope for improvement with the numbers and my functioning.

    I am already taking Ferrous Sulphate prescribed for low end of normal Ferritin. The B12 and folate were OK. To be fair the only reason why I feel inclined to go back to the NHS endocrinologist is because he wanted to check my Vit D and I have a blood form for that. I got the impression he was clutching at straws, but it would be worth having peace of mind because when I asked for it via the GP the lab didn't test Vit D.

    Fiona

    <b>Updated on Aug 2 2010 3:04PM:</b> So yeah if there is a chance that this private doctor could increase meds for bloods that are OK but could be better so to speak, then it would be worth a go.

    <b>Updated on Aug 2 2010 3:05PM:</b> What I mean is with all the controversies, I am sure that anybody is a gamble, even those who used to be good and perhaps some are not as good as they used to be. All I can do is go with this doctor, who was at least happy to read a quick e-mail about my situation first and I have been told by his secretary that they already have others who travel a journey and others on Armour. Having said that, all this is very demoralising.

  • Here is my update! Good news!

    I thought the private appointment was a gamble and that potentially, even a private endocrinologist appointment has the potential to turn into a waste of time, if they only believe in Levothyroxine.

    Straight away he saw that although the T3 was in range, I am not taking enough. He said that the reason why I fall asleep in the evenings is because the T3 runs out by then. The minimum dose of T3 he recommends is 60mcg, i.e. a whole tablet to cover you for am, pm and evenings!

    He therefore said to reduce the Levothyroxine to 50mcg and to use 60mcg T3.

    All I need now is no logistical problems with regards to the GP and prescriptions. I already called in with a letter, to explain that I have had the appointment and what the consultant said and so he can expect the letter. I have an appointment next week, so I can explain things properly.

    In the interim I am taking 50mcg Levo and 40mcg T3 because the GP only prescribes 28 T3 tablets, they won't last 5 mins and perhaps I should step up the dose for now.

    Of course the other sticking point may be blood tests and getting the full test and not just TSH (don't laugh). I will ask the GP to arrange with the person in charge at lab or something.

    I am sure the suppressed TSH will be a sticking point, but the new consultant thought that by reducing the Levo a bit, this will help the TSH not be quite so low.

    I think the consultant was perplexed as to why I stopped the tablets that Dr P wanted me to have if he prescribed it. Then I had to explain that strictly speaking it wasn't prescribed, it is self medicating but with his advice and instruction... I think he just wanted to be clear in his mind that I didn't stop the tablets due to a bad experience with the medication, it was due to controversies and getting diagnosis.

    I actually believe this doctor valued my past experiences and has seen that I have gone through a lot and wants me to just get on with meds that will help now.

    So in fact the appointment went better than I expected!

    So I do have a positive story to share. It is a shame that I have gone through 4 years of hell, a lot of stress, ill health and expense and that you have to work hard to find a consultant who will help.

    Fiona.

  • More ups and downs - story not over. You'll never guess what the GP did now!

    Suprisingly I managed to collect my prescription for the 60mcg T3 dose, with no problems. Whoever did the repeat prescriptions, just signed it off, within the usual time-frame and thought it reasonable to do so, having read the consultant's letter.

    SNAG: Today I saw my actual GP to go into things more.

    He told me that he wrote to my NHS consultant to ask if he agreed with the dose recommendation! How dare he! Not sure if he can do that without my permission, but I thought it was out of order and have been angry all day about it.

    I said that if the NHS consultant agreed with the prescription, then he would have recommended that dose in the first place and I wouldn't have needed to get that private other opinion. So assuming he disagrees, where do we go with that. He wasn't sure at first but said private prescritptions. I said I am trying to get away from having to self fund appointments, tests and tablets.

    Of course he said it is my fault that I have paid for the appointment, when I was getting help at an NHS hospital!

    I really impressed on him that it was for a reason and that I hit the end of the road and the NHS consultant wouldn't adjust doses...

    Any recipient of that letter would assume I have had a bad experience with the tablets - the opposite actually.

    Basically the whole thing is amoral - that I can do what I like as long as I pay, there is a chance that the dose may stay on my repeat prescription but the odds are stacked against me.

    Having discussed this at home, my husband wants me out of that surgery NOW - i.e. before they get a chance to reduce the dose back to what it was before.

    I really cannot face all this, so my Mum has kindly offered to be with me tomorrow to support me in trying to sign up elsewhere.

    Really it's the vibe - the fact that they tend to look at me like I am a looser and not worth spending the money on, like I am a problem patient or something. I have had some bad comments made against me this year by various GPs such as "I don't have a majic wand" "as we get older... starts to happen" (I am 34).

    There were no questions or comments along the lines of: so that means you were really ill before this private appointment, or in what ways is the higher dose helping - nothing like that. Just a fake pleased comment that it's good I am feeling better - but to hell with it, if it comes to it, self fund your blood tests and tablets.

    Hoping to find a better GP. I don't want to be buddy buddy, always going in, just get some more help.

    Fiona

  • I have been busy trying to decide which GP to sign up with.

    It's useful to try and get an idea if they'll play ball first, but that is not easy because they don't tend to enter into communication before you become a patient.

    There was one surgery where the receptionist made a note of the 60mcg T3 dose and said she would try and have a word with the GP for me.

    Time dragged on, then I phoned back but the surgery was closed.

    I felt like I needed to make a decision so all this wasn't hanging over me for the BH weekend, so I filled in a form elsewhere, assuming they wouldn't get back to me.

    Only would you believe it? I had an interesting call from the GP surgery after 7pm out of hours!

    She could understand why a GP could query the dose as Levothyroxine works for most. But she saw the other side of things, that sometimes some people need different treatment...

    She said she wouldn't rule it out and if I wanted to go and see her, do so.

    Basically she would want to look at letters and look into it more, but it sounds like this would be an understanding GP.

    So all I need to do now, is on Tuesday am cancel that application at the other place LOL. Granted as a receptionist, if you had been given a form, 10 mins before closing for BH weekend, you would leave it until Tuesday, so no doubt they wouldn't have done anything with it anyway. A little embarrassing, but I ought to go with the doctor who took the time to phone somebody like me, who is thinking of becoming a patient.

    Fiona

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