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  1. #1
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    Exclamation The Thyroid War ! Medical profession battling thyroid patients !


    Brits can, but Scandinavians can not? Why?


    Februar 5 2013:

    Thyroid Petition Debate at Scottish Parliament on Tuesday 5 Feb.2013


    Since TPA’s inception in 2007, we have written to numerous individuals and organisations in our endeavour to ensure that the present diagnostics and treatment protocols will be investigated and, where necessary, changed, so that all sufferers of thyroid, and thyroid related conditions will be given a correct diagnosis and treated with medication appropriate to their specific needs. We have sent official complaints to the Human Rights Commission; Liberty; the Department of Fair Trading; the Charities Commission; the Secretary of State for Health (Scotland and England); the Secretary General and many others. Almost all of our letters and complaints have so far been ignored, or rejected, as they have been with other thyroid campaigning groups.

    TPA will not give up - we are fighting for you.

    We were thrilled to have been invited to a meeting with Elaine Smith, MSP at the magnificent Scottish Parliament Building in Edinburgh last year. The outcome of that meeting was that it was agreed that a Petition should be submitted to the Scottish Parliament Petitions Committee who would decide, in a case of dispute, whether it is admissible and if so, what action should be taken.

    As far as I am aware, the Scottish Parliament is the only Parliament in the UK where a petition may be brought by an individual person (other than a member), a body corporate or an unincorporated association of members. The English Parliament requires 100,000 signatures before they will decide whether a Petition is admissible to be debated.

    I am now delighted to inform you that a Petition entitled “Effective Thyroid and Adrenal Testing, Diagnosis and Treatment” has been submitted by Scottish residents Sandra Whyte, Marian Dyer and Lorraine Cleaver (all members of TPA) and this Petition will be discussed initially, in Parliament on Tuesday 5 February 2013.

    The details of this Petition can be read here and you can watch the live debate of this initial discussion here .

    After the initial discussion on Tuesday 5 Feb.2013, the debate will be open to all who wish to submit comment and/or present further evidence for those who wish to support our cause.

    TPA is strongly supporting this Petition by presenting the Scottish Parliament with extra evidence, supported by references to research studies.

    It is vital that the Scottish Parliament is made as thoroughly aware as possible that the success of this Petition would have a crucial and positive impact on the lives of tens of thousands of their fellow citizens (and potentially millions worldwide) - so please do whatever you can to help.

    www.tpauk.com


    Februar 7 2013:

    Thyroid Petition - Scottish Parliament. Link to Video of Initial Debate


    Further to my last message about the Thyroid Petition lodged with the Scottish Parliament Petitions Committee and the initial discussion that took place on Tuesday 5 February 2013, I am now delighted to give you a link from the Scottish Parliament News and Media Centre so you can watch and listen to what took place. http://www.scottish.parliament.uk/ne...tre/41424.aspx (or below/red. Mod)



    The outcome, as far as I am concerned, is excellent - as you will find out for yourself, and Sandra Whyte and Lorraine Cleaver presented the plight of those being left to suffer with symptoms of hypothyroidism brilliantly. They both responded extremely well to questions asked by several of the MSP's.

    When I first watched the video, I felt extremely emotional (quite close to tears) listening to their statements, and I could feel the shock that rippled around Room 4 as the MSP listened to the reason why such a petition had needed to be submitted.

    The Scottish Parliament will be writing to Dr Stefan Sjoberg from Sweden, who was involved with the lowering of the TSH range there to 0.3 to 2.5 and to Dr Lindner from Pennsylvania (read his great explanation of 'Why Doctor's Don't Get It' http://hormonerestoration.com/Docs.html and the various myths etc. He covers all the hormones, not just thyroid.. His web site is here http://hormonerestoration.com/ and Dr Stefan Sjöberg at Karolinska Institutet, Sweden.

    It was agreed that World Health Organisation be asked to respond because it was recognised this was not just a Scottish Problem, this was a universal problem.

    TPAUK along with other oganisations/individuals are to be approached and as far as I understand it, they will be given a set time in which to respond, after which time, for those interested in responding to any comments made, or who wish to produce further evidence to support the petition - you can do this here http://www.scottish.parliament.uk/pa...ees/29869.aspx. The BTA, BTF and/or TPA have not been asked to respond at this stage, but TPA will be responding at a later stage in the debate. I want to see what the RCP has to say before moving forward.

    I will send out this link to all our members, TPA medical advisers, all UK endocrinologists, Heads of all Medical Schools in the UK , various thyroid organisations and owners of thyroid web sites and thyroid forums throughout the world (and all those who work outside of mainstream medicine) to give all the opportunity of taking part too. For everybody, space will be limited, but from all accounts, is still generous and all comments and evidence will be taken into consideration.

    Last year was a long year, but this year has started well - and let's hope that, at last, this is the "end of the beginning"!

    Sheila
    www.tpauk.com

    Februar 8 2013:

    Thyroid Debate - Scottish Parliament.

    WE NEED YOU NOW - MORE THAN EVER!


    It is VITAL that the Scottish Parliament know the enormity of the problems that millions of people worldwide are facing in their often futile endeavour to get a proper diagnosis and treatment for their specific needs. Without each and everyone of us 'doing our bit' to help ourselves and to help all those others being left to suffer, the change we need will never come about.

    If you have not watched this amazing video to see what is happening - then please do so http://www.scottish.parliament.uk/ne...tre/41424.aspx. (or below/red.Mod)



    Please support this initiative (wherever you live in the world) by sending an Email to petitions@scottish.parliament.uk with the simple title of 'Thyroid Petition'. Write your brief personal experiences regarding how difficult it is to get a correct diagnosis and/or to receive proper medication. You may wish to include any relevant research and/or documentation regarding thyroid and/or thyroid related health problems.

    You will see from the video that The Scottish Parliament appear to be already on our side - and they are listening, but we need them to know how many millions of us are affected by mismanaged care so that they can make necessary provisions. They are already setting up a Working Party specifically to deal with this problem.

    Please do remember that the Scottish Parliament are likely to be sent thousands of messages regarding this subject, so, if you want them to read your Email, keep it as brief as possible.

    Thank you so much for your support.

    Sheila

    www.tpauk.com


    Read more:
    Thyroid Petition Submitted to the Scottish Parliament



    Highly related:
    Our Holy Miracle of the Infallible TSH test!
    Why Isn't My Thyroid Medication Working?
    "Your TSH is normal", says Anthony Weetman
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  2. #2
    Medlem siden
    Mar 2009
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    Sverige
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    2,322

    Standard PE01463: Effective thyroid and adrenal testing, diagnosis and treatment



    The details of this Petition can be read here and you can watch the live debate of this initial discussion here .
    Petitioner: Sandra Whyte, Marian Dyer and Lorraine Cleaver

    Date Lodged: 19 December 2012

    Calling on the Scottish Parliament to urge the Scottish Government to take action to ensure GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment.

    > Read Petition background information
    > Previous action taken to resolve issue

    Click here for the petition PDF

    Petition History: SPICe Briefing (97KB pdf)

    Summary:

    5 February 2013: The Committee took evidence from Sandra Whyte and Lorraine Cleaver. The Committee agreed to write to the Scottish Government, the General Medical Council, the Royal College of Physicians, Thyroid UK, the World Health Organization, the Scottish Intercollegiate Guidelines Network, Dr Stefan Sjöberg at Karolinska Institutet, Sweden and Dr Henry Lindner, Pennsylvania, USA.
    Vedlagte filer Vedlagte filer
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  3. #3
    Medlem siden
    Mar 2009
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    Sverige
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    2,322

    Exclamation Sv: PE01463: Effective thyroid and adrenal testing, diagnosis and treatment


    Tuesday, 1 October 2013 - 10.00am.

    Round Table Meeting at the Scottish Parliament, Edinburgh, EH99 1SP (starting 10.00a.m.) to discuss the Thyroid Petition PE10463.

    The meeting will take place in Committee Room starting at 10.00 am and the meeting will be recorded live, so keep this link handy:

    http://www.scottish.parliament.uk/ne...tre/30875.aspx.

    If you are unable to watch at that time, the link will remain active, for when you are able.
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  4. #4
    Medlem siden
    Oct 2006
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    Danmark
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    67
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    10,216

    Standard Sv: PE01463: Effective thyroid and adrenal testing, diagnosis and treatment

    Sitat Opprinnelig skrevet av Mod Vis post
    The meeting will take place in Committee Room starting at 10.00 am and the meeting will be recorded live, so keep this link handy:

    http://www.scottish.parliament.uk/ne...tre/30875.aspx. If you are unable to watch at that time, the link will remain active, for when you are able.
    Det var nu et andet link: http://www.scottish.parliament.uk/ne...tre/30877.aspx som fører til den video, jeg dog ikke kan se uden at uploade Silverlight. Jeg har ikke lyst til endnu en "player" på min computer, så i stedet vil jeg fremover holde øje med Youtube, i fald denne rundbords-møde bliver uploadet, som det er sket den første høring, omtalt tidligere i tråden. Jeg fandt dog Dagsorden (agenda) for mødet i dag (det som står i rødt, er fremhævet af mig):

    PUBLIC PETITIONS COMMITTEE

    AGENDA


    16th Meeting, 2013 (Session 4)
    Tuesday 1 October 2013


    The Committee will meet at 10.00 am in Committee Room 2.

    2. PE1463 - effective thyroid and adrenal testing, diagnosis and treatment:

    The Committee will take evidence in a round table format from —

    • Michael Matheson, Minister for Public Health,
    • Professor Graham Leese, CMO Specialty Adviser for Endocrinology,
    • Mark O’Donnell, Head ofQuality and Planning Division, and Lesley Metcalf, Policy Manager, Clinical Priorities Team, Scottish Government;
    • Sandra Whyte, Marian Dyer, and Lorraine Cleaver, Petitioners;
    • Tara Wilmott, Head of Approvals, Education and Standards Directorate,General Medical Council;
    • Dr Anthony Toft, Consultant Physician, Spire Murrayfield Hospital,Edinburgh;
    • Lyn Mynott, Chair/Chief Executive, Thyroid UK;
    • Professor Graham Williams, President, British Thyroid Association andTreasurer, Society for Endocrinology.

    Agenda item 2

    PE1463 Note by the Clerk PPC/S4/13/16/1
    PRIVATE PAPER PPC/S4/13/16/2

    • Petitioner Letter of 26 June 2013 PE1463/P
    • Medicines and Healthcare Products Regulatory Agency Letter of 5 August 2013 PE1463/Q
    • Amdipharm Mercury Letter of 20 August 2013 PE1463/R
    • Thyroid Patient Advocacy Email of 19 September 2013 PE1463/S
    • Royal College of Physicians Letter of 11 September 2013 PE1463/T
    • Dr John E Midgley Letter of 20 September 2013 PE1463/U
    • Petitioner Letter of 24 September 2013 PE1463/V
    • Eric Pritchard Letter of 24 September 2013 PE1463/W


    PPC/S4/13/16/1
    Public Petitions Committee

    16thMeeting, 2013 (Session 4), Tuesday 1 October 2013PE1463 on effective thyroid and adrenal testing, diagnosis and treatment


    Note by the Clerk


    PE1463 – Lodged 19th December 2012

    Petition by Sandra Whyte, Marian Dyer and Lorraine Cleaver calling on the Scottish Parliament to urge the Scottish Government to take action to ensure GPs and
    endocrinologists are able to accurately diagnose thyroid and adrenal disorders andprovide the most appropriate treatment.
    Link to petition webpage

    Purpose

    1.The Committee last considered this petition on 25 June 2013 and agreed to holda round-table discussion on the issues raised by the petition at a future meeting. Since then, several submissions have been received. Following the round-tablediscussion, the Committee is invited to agree what action it wishes to take on the petition.

    Background

    2. Hypothyroidism is a condition in which the thyroid gland produces insufficient amounts of Thyroxine, which can result in symptoms such as tiredness, weightgain and depression. It is estimated that 3.7% of patients registered with a GPpractice in Scotland have been diagnosed with hypothyroidism[1], resulting in an estimated 103,000 people being seen annually by either a GP or practice nurse[2].

    3. A patient presenting with the above symptoms would typically undergo a thyroid function test to confirm diagnosis. This test measures the levels of Thyroid Stimulating Hormone (TSH) and free Thyroxine (T4) in a person’s blood. Once diagnosed, hypothyroidism is usually treated in primary care with the prescription of Thyroxine (T4) tablets (Levothyroxine).

    4. SIGN (The Scottish Intercollegiate Guidelines Network/red.) has not published any guidelines on the diagnosis and management of hypothyroidism. However there are guidelines which were co-published in 2008 by a number of professional bodies[3], and revised in June 2011[4]

    5. The guidelines specifically address point 3 of the petition which relates to alternative treatments to T4 alone, including the combined use of T3 (see footnote 5) and T4. It states:

    “The RCP does not support the use of thyroid extracts or levothyroxine and T3 combinations without further validated research published in peerreviewed journals. Therefore, the inclusion of T3 in the treatment of hypothyroidism should be reserved for use by accredited endocrinologists in individual patients.”

    Scottish Parliament Action

    6. Elaine Smith MSP, who made a submission to the Committee, has lodged a number of questions and a motion on this issue since 2010, most recently question S4W-15415 on the impact of the recent shortage of liothyronine (T3) medication.

    Committee Consideration

    7. Following initial consideration on 5 February 2013, a large number of submissions (approximately 185) were received, the majority of which were personal accounts from thyroid and adrenal disorder patients, supporting the petition. Two charitable organisations also submitted their support.

    8. The General Medical Council stated that it was satisfied that the submissions from the respective Royal Colleges in relation to the content and requirements of the curricula that cover thyroid and adrenal testing fulfil its standards. The Scottish Intercollegiate Guidelines Network confirmed that it has no guideline, or plans for such, on thyroid and adrenal disorders.

    9. The Scottish Government acknowledged that consideration should be given to exploring a mechanism to examine all published clinical evidence. Following its meeting on 16 April 2013, the Committee wrote to the Scottish Government recommending it establish a short-life working group to do this. In its response, the Scottish Government stated that it has already taken steps to inform its decision. This included requesting an evidence note from the Scottish Health Technologies Group at HIS which, if accepted, may take four to six months to complete.

    10. The Committee considered the petition again on 28 May 2013 and, at its meeting on 25 June 2013, took evidence from the Cabinet Secretary for Health and Wellbeing on the interruption to the supply of Liothyronine medicine, and other related issues. Following this, the Committee agreed a list of individuals and organisations to invite to participate in a round-table discussion on the petition.

    11. Since that meeting, the following submissions have been received —

    • PE1463/P: Petitioner Letter of 26 June 2013
    • PE1463/Q: Medicines and Healthcare Products Regulatory Agency Letter of 5 August 2013
    • PE1463/R: Amdipharm Mercury Letter of 20 August 2013
    • PE1463/S: Thyroid Patient Advocacy Email of 19 September 2013
    • PE1463/T: Royal College of Physicians Email of 11 September 2013
    • PE1463/U: Dr John E Midgley Letter of 20 September 2013
    • PE1463/V: Petitioner Letter of 24 September 2013
    • PE1463/W: Eric Pritchard Letter of 24 September 2013

    12. The first three of these submissions concern the recent interruption to the supply of Liothyronine medicine and the evidence session on this issue with the Cabinet Secretary for Health and Wellbeing. The petitioners raise questions over the management of this drugs shortage, highlighting that the issue was brought tothe attention of the MHRA by patients and not the manufacturer. They also reiterate their concerns over the guidance to clinicians on prescribing unlicensed drugs, and the efficacy of the medication that is prescribed.

    13. The Royal College of Physicians submitted its published statement on the diagnosis of primary hypothyroidism, as well as an article from the BMJ. In its email, the College states:

    “We have no plans to review our policy”; and, “We do not intend to respond to the petition. This is because we have already responded over a period of time in England, and produced our official response”.

    14. Of those the Committee invited, the Royal College of Physicians is the only organisation that did not field a representative for the round-table discussion. Dr Midgley, Thyroid Patient Advocacy and E Pritchard have submitted evidence in order to inform the Committee’s consideration of those issues that are likely to be raised during the round-table discussion.

    Action

    15. Subject to the outcome of the round-table discussion, the Committee is invited to agree what action it wishes to take. Options include —

    (1) To defer consideration of the petition to a future meeting to awaitcompletion of the work being undertaken by the Scottish Government;
    (2) To recommend that the Minister propose to SIGN that guidelines be developed on the diagnosis and management of hypothyroidism;
    (3) To take any other action that the Committee considers appropriate.

    References:
    [1] ISD Scotland (Online) Quality and Outcomes Framework Prevalence Data – Hypothyroidism
    [2] ISD Scotland (Online) Practice Team Information Statistics – Hypothyroidism
    [3] Endorsed by the Royal College of Physicians, the Association for Clinical Biochemistry, British Thyroid Foundation, Society for Endocrinology, Royal College of General Practitioners, British Thyroid Association, British Society of Paediatric Endocrinology and Diabetes.
    [4] Royal College of Physicians (2011) The Diagnosis and Management of Primary Hypothyroidism
    [online]
    [5] T3 refers to triiodothyronine, another hormone produced by the thyroid gland.

    Kilde: http://www.scottish.parliament.uk/S4...s_20131001.pdf


    Bliver spændende at se, om video af mødet i dag, kommer på Youtube senere...
    • Tak for at du læste mit indlæg.
    • Vil du vide lidt om hvad jeg står for, er du velkommen til at læse min signatur her

  5. #5
    Medlem siden
    Mar 2009
    Sted
    Sverige
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    74
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    2,322

    Exclamation Sv: PE01463: Effective thyroid and adrenal testing, diagnosis and treatment

    Sitat Opprinnelig skrevet av Mod Vis post

    Tuesday, 1 October 2013 - 10.00am.

    Round Table Meeting at the Scottish Parliament, Edinburgh, EH99 1SP (starting 10.00a.m.) to discuss the Thyroid Petition PE10463.

    The meeting will take place in Committee Room starting at 10.00 am and the meeting will be recorded live, so keep this link handy:

    http://www.scottish.parliament.uk/ne...tre/30875.aspx.

    If you are unable to watch at that time, the link will remain active, for when you are able.



    Sheila wrote:

    Most of you will now be aware that the Round Table Meeting that took place last Tuesday (1 October 2013) with Scottish Government Representatives (and others) If you have not watched the video of this important Debate, you can watch it here, but you need an hour and a half to listen to it all.

    As far as I am concerned, it did not go well and there is a lot of work still needed by us to get the 'powers that be' to listen to us, which you will see comes across loud and clear that they are still not prepared to do - YET!. http://www.scottish.parliament.uk/ne...tre/41423.aspx

    At the end of this Debate, it was decided that further evidence should be gathered from dissatisfied patients, who are willing to give details to show their level of unhappiness with their diagnosis/lack of diagnosis - treatment/lack of treatment, etc., after presenting with symptoms and signs of hypothyroidism to their medical practitioner.

    Elaine Smith MSP would like to hear from 100 + dissatisfied patients. Stories can come from anybody, wherever you live, but they are particularly looking to gather stories from Scottish Thyroid/Adrenal Patients who have been left in an unhappy state. All personal details that could identify you in any way would naturally be removed under The Data Protection Act 1998 (of which TPA is registered) before being passed on elsewhere. However, it is IMPORTANT THAT YOU IDENTIFY YOUR COUNTRY OF RESIDENCE. Please send your stories (the concise version please) direct to me sheila (at) tpauk (dot) com and I will forward these on to Elaine Smith MSP.

    Some ideas!

    How long have you suffered symptoms?
    How many symptoms have you suffered?
    How long did your doctor take to recognise your symptoms?
    Are you showing any 'signs'?
    How many 'signs' are you showing?
    Have you been given a diagnosis?
    What was your first diagnosis?
    Have you been given any other diagnoses?
    Did your doctor test your TSH and Free thyroid hormones?
    Did your doctor test TSH only?
    Did your doctor test Free T3?
    What were the results? (You need to give the reference range for each of the tests that were done here)
    What were you prescribed?
    After treatment, do you still have symptoms?
    Were your adrenals checked?
    Were your levels of vitamins/minerals etc checked?
    Were you referred to an endocrinologist?
    How happy were you with your overall treatment?
    Did your doctor satisfactorily answer all your questions?

    Please add any other relevant information that fits your specific case in your story.

    Thank you for participating. You are helping to bring change.

    Sheila
    Thyroid Patients Advocacy
    Til alle norske og danske stoffskifte-pasienter, anbefaler vi boken STOP stofskiftevanviddet, skrevet av verdens ledende pasient-aktivist Janie Bowthorpe, som i 2005 grunnla nettstedet Stop The Thyroid Madness. Boken er utgitt på dansk i 2014. För alla svenska hypotyreos-patienter, rekommenderar vi samma bok, översatt till svenska med titeln Stoppa sköldkörtelskandalen (2012). Til alle gode leger, og pasienter som ønsker å lære mer av "the right stuff", anbefaler vi boken Stop The Thyroid Madness II (2014) med bidrag fra 10 leger MD. I Skandinavia, definitivt de to beste og mest nyttige bøker for hypotyreose-pasienter, for deres familier og venner, og for deres leger.

  6. #6
    Medlem siden
    Mar 2008
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    Oslo
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    5,124

    Standard Sv: The Thyroid War ! Medical profession battling thyroid patients !

    Jeg håper de får til en bedring i helsevesenet sitt. Det er nok mange maktglade leger som ønsker å ha det slik det er, de mener nok det er bra nok
    Hashimoto's, hypotyreose, Armour 2009
    Å leve med binyrebarksvikt eller binyretretthet
    • Ren T3 og LDN (lav dose Naltrexon) 2012, virket ikke. Bruker thyroid

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