Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 HI SHEILA I have already been 6 days without thyroxine, and my GP had rang me before he went home sick, and said he would prescribe anything I ask for in the way of thyroxine. I emailed through the repeat prescriptions through my surgery stating how to write the prescription out. I have just got in touch with the surgery, and now I am told that not only is he sick, but he also has a family bereavement, so they told me he is off indefinitely. They also said that he is the only one that can deal with it. I have ask them if they can ask another Doctor how long I can afford to go without thyroxine, and in turn it appears they only have one Doctor, so it sounds like the whole surgery has been hit by my GP'S INFECTION. Can you offer any advice as to how to keep myself OK until I can get my prescription. This area has been hit by a lot of illness, so I have kept indoors and away from people to avoid being ill myself. Best wishes From Kathleen PS- Sheila advised getting in touch with my local PCT, which I have just done. There is only an answer phone to leave a message on, and they are supposed to call back before the end of the day. Are they likely to help when they are all getting sacked in March. If all the staff at the surgery had the flu jab could it have caused them to be ill. Glad I did not have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 I can't see how a surgery could carry on with only one doctor. Surely they should be bringing in a locum or two to cover whilst the doctors are ill. I would still try contacting the PCT and ask them to help you in such an emergency as they cannot leave you without medication, especially as this is a life-long medication your body cannot function without. They should help you even though they are " being sacked " in March Are you able to go back onto a different thyroxine brand - one that doesn't contain any of the fillers that cause you to be so intolerant of them? Does anybody else have other ideas please for Kathleen. Luv - Sheila I have already been 6 days without thyroxine, and my GP had rang me before he went home sick, and said he would prescribe anything I ask for in the way of thyroxine. I emailed through the repeat prescriptions through my surgery stating how to write the prescription out. I have just got in touch with the surgery, and now I am told that not only is he sick, but he also has a family bereavement, so they told me he is off indefinitely. They also said that he is the only one that can deal with it. I have ask them if they can ask another Doctor how long I can afford to go without thyroxine, and in turn it appears they only have one Doctor, so it sounds like the whole surgery has been hit by my GP'S INFECTION. Can you offer any advice as to how to keep myself OK until I can get my prescription. This area has been hit by a lot of illness, so I have kept indoors and away from people to avoid being ill myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 On Tue, 4 Jan 2011 14:45:38 -0000, you wrote: > >Does anybody else have other ideas please for Kathleen. If she would like to e-mail me off list I can make a couple of suggestions. Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 HI SHEILA I have just received a call back from the PCT, and they have told me to wait until I receive a call back from the surgery, to see if another GP will prescribe, and the PCT will call me tomorrow to see what happens. I have to go for my injection at Basingstoke Hospital tomorrow. My GP had also left my urgent referral to the Rhumatologist until after NEW Year as he said it would get left on somebodies desk, so I gather this has not got done either. I already know that meat , fish and calcium, are a problem. I have suspected ANHYDROUS SODIUM as a problem, but I would think lactose could well be. The NHS do not do allergy testing I was told which could help rule out the other ingrediants as problems, so I was going to try dales to rule this out. If that did not help then it must mean I need T3. I also have to wonder if Rice Milk is upsetting me which is also calcium, so I shall soon be inundated with food I cannot eat. Kathleen > > I can't see how a surgery could carry on with only one doctor. Surely they > should be bringing in a locum or two to cover whilst the doctors are ill. I > would still try contacting the PCT and ask them to help you in such an > emergency as they cannot leave you without medication, especially as this is > a life-long medication your body cannot function without. They should help > you even though they are " being sacked " in March > > Are you able to go back onto a different thyroxine brand - one that doesn't > contain any of the fillers that cause you to be so intolerant of them? > > Does anybody else have other ideas please for Kathleen. > > Luv - Sheila > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 I am not sure how to email off list, but its clear I did not do that correct. I clicked on send email on the right side, and have received an email response from DAEMON MAILER as returned as undelivered, so HELP Kathleen > > > > >Does anybody else have other ideas please for Kathleen. > > If she would like to e-mail me off list I can make a couple of > suggestions. > > Nick > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Dear Kathleen - speaking as one of those employees who 'are all getting sacked in March' I can assure you that we are not getting sacked, some may be made redundant. It is the PCTs that are closing not the functions of the employees of PCTs. If you go with this attitude and find it difficult to get help then Im afraid I wont find that surprising!secondly, yes they will help you as much as possible but are likely only just back from a Christmas holiday like many other people and if you have left your number Im sure they will contact you.The GP practice have a duty of care to give you medicine for a condition which you have been diagnosed with so I would make an appointment to see one of the other GPs and also when you ring the PCT ask to speak to the Medicines Management team and speak to one of their pharmacists.best wishes,GillModerator and TPA Trustee PS- Sheila advised getting in touch with my local PCT, which I have just done. There is only an answer phone to leave a message on, and they are supposed to call back before the end of the day. Are they likely to help when they are all getting sacked in March. If all the staff at the surgery had the flu jab could it have caused them to be ill. Glad I did not have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 I have a lot of sympathy with the original poster, when you are hypo, you are HYPO and can't function or think straight. If someone tried to prevent me getting the life-saving medicine that I need I think I would be cross at anyone and everyone who crosses my path. I work in education (as a teacher), and we have heard that everyone in the LA has had a letter putting them on notice of potential redundancy, and they now all have to wait to see if they get a second letter telling them their job is safe (for the time being). What a way to run an organisation!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Thanks Jill The PCT did get back in touch, but they said to wait to see what the surgery do when the GP rings back, but have received no call back from them. I have to get back in touch with the PCT after I come back from getting my injection tomorrow for frozen shoulder at Basingstoke Hospital. My GP had told me that the PCT were going.I got the impression he did not want any part in control of NHS funding, as he wants to do the job as he is paid to do as a Doctor, like the rest of the Doctors. He then said it would probably be the same only called something different.Does it mean that the staff or most will stay, with some GP'S at the helm (running it).I did not even know that they had a medicine management team, so does this mean they may help in why the thyroxine that I was on was not helping me. Kathleen -The GP practice have a duty of care to give you medicine for a condition which you have been diagnosed with so I would make an appointment to see one of the other GPs and also when you ring the PCT ask to speak to the Medicines Management team and speak to one of their pharmacists. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Hi - glad they got back to you - most GPs dont want to be involved in commissioning, its right that they are because if they arent effectively they are spending money from someone else's purse! Yes PCTs are going but the functions will be going to either the GP commissioners or the new commissioning boards etc. There are still a lot of questions and uncertainties!The PCT will intervene and mediate with your GP practice if necessary but its the GP who should be making sure you have got the medicine you need. Dont go without the medicine if you dont get any joy from the GP then get back in touch with the PCT. The medicines management team are pharmacists so they understand medicines - you could ask them about the thyroxine not helping or ask your GP if you can have a medicines review with a pharmacist. Im not sure what the problem with your mediicine is - if the original GP prescribed something then I dont understand why another GP cant prescribe it - if youre saying that its T3 or Erfa that another GP might be loathe to prescribe personally then that is when you need to get the PCT involved. if you need any help in sorting this then do contact me off forum.regards,Gill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Did they call you back Kathleen? Luv - Sheila PS- Sheila advised getting in touch with my local PCT, which I have just done. There is only an answer phone to leave a message on, and they are supposed to call back before the end of the day. Are they likely to help when they are all getting sacked in March. If all the staff at the surgery had the flu jab could it have caused them to be ill. Glad I did not have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 It depends how you have chosen to receive messages but I get individual emails so I can pick up somebody's email address where it shows 'From'. If you read from the web, look at the right hand column and click 'Source' and you can pick up his email address from there. However, here is Nick's address lists @ oakfield-icelandics. co. uk (take out the spaces) Luv - Sheila I am not sure how to email off list, but its clear I did not do that correct. I clicked on send email on the right side, and have received an email response from DAEMON MAILER as returned as undelivered, so HELP Kathleen > > > > >Does anybody else have other ideas please for Kathleen. > > If she would like to e-mail me off list I can make a couple of > suggestions. > > Nick > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Remind me again of your last thyroid function tests Kathleen, and if this did not include free T3, I would strongly recommend that you get this done privately through Lab 21. It costs £17. This would show the level of free T3 in your blood, but would not show whether the T3 is being used by the body. To find that out, you would need the 24 hour urine test from Genova. I would suspect that it is a lack of T3 that is causing many of your problems. Luv - Sheila I already know that meat , fish and calcium, are a problem. I have suspected ANHYDROUS SODIUM as a problem, but I would think lactose could well be. The NHS do not do allergy testing I was told which could help rule out the other ingrediants as problems, so I was going to try dales to rule this out. If that did not help then it must mean I need T3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Oh Gill - If only this was true. I have had numerous letters from PCT Pharmacists spouting the exact same untruths about natural thyroid extract, refusing to allow funding for NDT for patients who are unable to return to normal health on levothyroxine alone. They absolutely refuse to listen to the truth. Once everything settles down after the big 'Change', we need to send out the true facts out again to all of them again. What really annoys me more than anything else is that I spend hours of my time going through every 'untruth' they make, citing references to the facts, and they don't even bother to write back. They just continue with their previous stance. Do you know if any sufferers of hypothyroidism get funding from your PCT for natural thyroid extract and if not, what reasons do they give for refusing? I would be very interested to know this. Luv - Sheila The medicines management team are pharmacists so they understand medicines - you could ask them about the thyroxine not helping or ask your GP if you can have a medicines review with a pharmacist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 My GP had done a lot of blood tests last time, and he mentioned the TSH 5.5 CRP 48 ESR WAS ALSO RAISED. He has sent off the urgent RHEUMATOLOGIST appointment. Somebody else on this forum was also sent to a RHEUMATOLOGIST, and they mentioned that a test was done for T3, but I am not sure what other tests they do. My GP did not mention doing the free T3. The fact that I am not on thyroxine would a FREE T3 TEST be affected by this. The surgery will not take a private blood sample, but I do know that NUFFIELDS will for a charge take blood. I too have to wonder if T3 is needed but not on its own but with T4. The surgery are expecting my GP to pop into them on Friday and have booked a call from him over my prescription, if not I have to get back in touch. I will ask him about T3, including the tests you mention, and if a rheumatologist is likely to do them. I also feel that the adrenal glands are a cause for concern from the fall I had in June. Kathleen > > Remind me again of your last thyroid function tests Kathleen, and if this > did not include free T3, I would strongly recommend that you get this done > privately through Lab 21. It costs £17. This would show the level of free T3 > in your blood, but would not show whether the T3 is being used by the body. > To find that out, you would need the 24 hour urine test from Genova. I would > suspect that it is a lack of T3 that is causing many of your problems. > > Luv - Sheila > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 They did call back, but not the surgery, so I got in touch with them and they think my GP is popping into the surgery on Friday so they have booked a call from him, but if not I have to get in touch with them. There is another pharmacy which I came across on the ALLERGY UK site while looking up where allergy testing can be done called VECTRUM SERVICES not to far from here. During my chat to them they can obtain dales thyroxine in two days from another company that deal with dales. I thought I would let you know this. On this ALLERGY UK site, you can place your postcode and it tells you the nearest one, and I presume that all VECTRUM SERVICES can obtain it. Kathleen > > Did they call you back Kathleen? > > Luv - Sheila > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I can tell you that a few months ago I spoke with medicines management at my PCT (who are also my employer) and was told that NDT was not considered as it was of an unknown quantity and it was not considered safe. This person said that they were aware that sometimes people bought it off the internet and this was not safe and was infact very dangerous! Also that T3 would only be prescribed in special cases and only if the Endocrinologist or a similar specialist suggested it. Of course I didn't believe her and anonymously sent her office info about NDT and how some people did have a need for T3 and would be suffering without it. I expect it got swept under the carpet like a nasty family secret!! I also met a pharmacist who was underactive and had been on Levo and when we had a little chat it was very clear that she felt that her hands were tied. I know of a nurse who post thyroidectomy and on T4 is still suffering and yet seems to think that T4 is the only way! What hope when there are people who are experiencing similar probs and work within the system, that they may not accept the info. I have just sent the Endo Nurse at a large teaching hosp where I had my 'waste of time' synacthen test done - a whole load of stuff off the Newsletter etc as she told me that she had heard of Dr P from someone in a support group. It all helps. Stacey > Oh Gill - If only this was true. I have had numerous letters from PC > Do you know if any sufferers of hypothyroidism get funding from your PCT for > natural thyroid extract and if not, what reasons do they give for refusing? > I would be very interested to know this. > > Luv - Sheila > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 If you are not taking any thyroxine with a TSH over 5.0, you need your free T3 tested. You need to know whether your own thyroxine being secreted by the thyroid gland is actually converting to the active T3 or not. Thyroxine is a prohormone with little action in the body until it has been converted. Regarding your adrenals, go to our Files section and open the 'Adrenals' folder, and then open the 'Adrenal Questionnaire' and answer all those questions and see how you score. Also in the same folder, check out 'Home Testing for Adrenals. Luv - Sheila The fact that I am not on thyroxine would a FREE T3 TEST be affected by this. The surgery will not take a private blood sample, but I do know that NUFFIELDS will for a charge take blood. I too have to wonder if T3 is needed but not on its own but with T4. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Hi Stacey - don't let this PCT get away with this. Write to them again and remind them that you took the trouble to send them the information that shows they are giving out misleading and incorrect information, and please would they reply to you within 10 working days. Ask them to cite references to the medical evidence that shows NDT is " dangerous " - this is an easy thing to say but this is ONLY their opinion and is not a FACT. Even the Medicines and Healthcare Products Regulatory Agency state that NHS doctors CAN prescribe NDT, though they have to take full responsibility for doing this as it remains an unlicensed product in the UK. Did you send this PCT the 'Facts about Natural Desiccated Thyroid' (see attached) and also my rebuttals to the BTA Statement (which are the cause of so much incorrect information being spouted) on T4 v T3, and Armour Thyroid http://www.tpa-uk.org.uk/tpa_responds1.php .. Ask them to point out where any of the statements in these rebuttals are incorrect. Don't let them off the hook - this is an easy way out for them and doesn't solve anything. My PCT has been only too happy to supply funding for my NDT for many years now. Luv - Sheila I can tell you that a few months ago I spoke with medicines management at my PCT (who are also my employer) and was told that NDT was not considered as it was of an unknown quantity and it was not considered safe. This person said that they were aware that sometimes people bought it off the internet and this was not safe and was infact very dangerous! Also that T3 would only be prescribed in special cases and only if the Endocrinologist or a similar specialist suggested it. Of course I didn't believe her and anonymously sent her office info about NDT and how some people did have a need for T3 and would be suffering without it. I expect it got swept under the carpet like a nasty family secret!! I also met a pharmacist who was underactive and had been on Levo and when we had a little chat it was very clear that she felt that her hands were tied. I know of a nurse who post thyroidectomy and on T4 is still suffering and yet seems to think that T4 is the only way! What hope when there are people who are experiencing similar probs and work within the system, that they may not accept the info. I have just sent the Endo Nurse at a large teaching hosp where I had my 'waste of time' synacthen test done - a whole load of stuff off the Newsletter etc as she told me that she had heard of Dr P from someone in a support group. It all helps. Stacey 1 of 1 File(s) FACTS ABOUT NATURAL THYROID EXTRACT.doc Quote Link to comment Share on other sites More sharing options...
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