Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi First, you MUST get your thyroid blood test results. Your doctor has no right to withhold these from you. Telephone his secretary as soon as possible and tell her that you want all the thyroid function tests that were done as soon as possible. They CANNOT stop you from seeing these. Ask her to email them to you and that you would like the results for your last TSH, Your Free T4, Free T3 and antibodies tests and any other tests that you had done at the same time. Has your endocrinologist or GP suggested that you might lose some of the fluid by taking a diuretic. If you retain fluid and it has nowhere to go, you are going to feel bad. Many people who are hypothyroid retain some fluid (I am one, and I could not manage without taking my 50 mcgs Co-Amilozide every day to get rid of the excess fluid. If you have not been prescribed a diuretic, then please ask your doctor to give you a trial - and doln't delay. There is no worse feeling than being pumped up with fluid with nowhere to go - especially in summer. It is cruel to leave you without a diuretic. Your remaining symptoms are most definitely hypothyroid and you are obviously not on either the correct dose of L-thyroxine, or you are not converting this inactive hormone (T4) to the active hormone T3. It is the T3 that makes you function. Did they give you a blood test to see where your Free T3 levels are? As your consultant would not give you your blood test results, write a letter right now to him and enclose a stamped addressed envelope. Just say something simply such as: Dear..... As I forgot to ask you for my last thyroid function test results when I saw you yesterday, please would you let me have these as soon as possible. I would like the results for my TSH, Free T4, Free T3 and also the results of the antibody tests if these were done. I have enclosed a stamped addressed envelope for this purpose. Please would you also post the reference range for each test as I appreciate different laboratories use different ranges. I would actually change my endocrinologist, as this particular one does not appear to be very knowledgeable about thyroid problems, that, or, he doesn't want you to know what is really going oln - probably thinks that all his patients are not very knowledgeable and would be better off not knowing the results. Tell him otherwise when you write to him. This is your body, you want to know what is wrong with it and what they intend to do to put it right. Incidentally, your doctor CANNOT refuse to let you have these results so don't let him try that on. If you have antibodies, this means that gradually, they will one day destroy your thyroid gland, and you will need thyroid hormone replacement for the rest of your life. You cannot function without thyroid hormones. I would look around for a more sympathetic and knowledgeable endocrinologist as you will not get anywhere with this one. Can you see a private doctor? If so, let me know and I will send you details. It is shocking that to get treated properly, we have to look outside the NHS. Luv - Sheila Suggested I was depressed. I countered with - does thataccount for my hair falling out or my feet swelling up then? He didn'thave an answer for that!! Tried to suggest menopause at this pointwhich I countered with - been there done that - sailed through it!!Isaid I don't think I am depressed as I have no reason to be. I'msleeping well, I'm in a happy marriage, my job is only stressfulbecause I feel so inadequate in it at the moment. Packed me off foranother lot of blood tests which the kindly phlebotomist says are forhormones etc. She was really sympathetic as has all the signs & symptoms of hypo but blood tests such she cant get ANY treatment!!Also got brain scan - my parting shot was 'hope they manage to findone as personally I think its on the way out!!' No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.21/1458 - Release Date: 21/05/2008 07:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi , Sadly your story is not uncommon, but that doesn't make it any better. You are entitled to your test results under the freedom of information act- suggest that you go to your GP and insist- you need the range as well as your own results as it does vary. There are various reasons why you aren't getting better which are covered on the website- candida, mercury ( usually from dental amalgam) adrenal insufficiency, insufficient medication, failure to convert T4 to T3. Your doc should have done TSH, free T4, free T3 and antibodies, but I bet you've only got the first two. Sadly the only way you will get well is by taking responsibility for your own health. If you wish to go private- Sheila has a list and will tell you whose nearest if you ask her. If your GP suggests HRT then remember that oestrogen mops up thyroid hormones and progesterone helps them, if there is a shortage of oestrogen then it is possible for the body to convert it to oestrogen. Subject: Where do I go from here? She was really sympathetic as has all the signs & symptoms of hypo but blood tests such she cant get ANY treatment!! Also got brain scan - my parting shot was 'hope they manage to find one as personally I think its on the way out!!' ------------------------------------ Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Very many thanks for the comprehensive advice, support and the really prompt reply. I certainly would entertain the idea of a private consultant. May have to wait until finances are a bit healthier or my company 'Choices' scheme comes around for renewal but hey it's been a year and I've gone backwards.I will certainly write for the blood test results as you suggest. Is there a private lab I can get them interpretted by? I couldn't get a clear picture nor can I remember what the next lot are for but the phlebotomist said one was for rheumatoid arthritis, another for 'inflamatory' disease plus thyroid and some other hormone related ones. Consultant never wrote to me as promised about the last (B12) test so not holding my breath about these either. I'd love to see my notes as I bet he's written I'm either suffering from munchausen, menopause , madness or all three!!My GP put me on a very low dose diuretic Bendroflumethiazde 2.5mg about 6 months ago. It has helped although as I say I still can't get 'normal' shoes on. I get SVTs (pre dating the thyroid diagnosis) for which the consultant himself (or rather his minion) prescribed Congescor 1.25mg. He's now suggested I now stop taking for a month to see if I feel any more alert and learn to live with the palpitations as they aren't life threatening. As to the weight problem he told me to eat less and exercise more!! I only consume about 1000 kcals a day as it is!! Exercise seems to bring on the palpitations and I had to give up tap dancing which I loved. All in all the visit left me feeling humiliated so I will take encouragement from your advice and do as you say.Again many thanks. You really are a truly wonderful person and have made me feel so much better. Re: Where do I go from here? Hi First, you MUST get your thyroid blood test results. Your doctor has no right to withhold these from you. Telephone his secretary as soon as possible and tell her that you want all the thyroid function tests that were done as soon as possible. They CANNOT stop you from seeing these. Ask her to email them to you and that you would like the results for your last TSH, Your Free T4, Free T3 and antibodies tests and any other tests that you had done at the same time. Has your endocrinologist or GP suggested that you might lose some of the fluid by taking a diuretic. If you retain fluid and it has nowhere to go, you are going to feel bad. Many people who are hypothyroid retain some fluid (I am one, and I could not manage without taking my 50 mcgs Co-Amilozide every day to get rid of the excess fluid. If you have not been prescribed a diuretic, then please ask your doctor to give you a trial - and doln't delay. There is no worse feeling than being pumped up with fluid with nowhere to go - especially in summer. It is cruel to leave you without a diuretic. I>>>>>>>>>>>>>>>>>>Can you see a private doctor? If so, let me know and I will send you details. It is shocking that to get treated properly, we have to look outside the NHS. Luv - Sheila Suggested I was depressed. I countered with - does thataccount for my hair falling out or my feet swelling up then? He didn'thave an answer for that!! Tried to suggest menopause at this pointwhich I countered with - been there done that - sailed through it!!Isaid I don't think I am depressed as I have no reason to be. I'msleeping well, I'm in a happy marriage, my job is only stressfulbecause I feel so inadequate in it at the moment. Packed me off foranother lot of blood tests which the kindly phlebotomist says are forhormones etc. She was really sympathetic as has all the signs & symptoms of hypo but blood tests such she cant get ANY treatment!!Also got brain scan - my parting shot was 'hope they manage to findone as personally I think its on the way out!!' No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.21/1458 - Release Date: 21/05/2008 07:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Thank you - yes I've come to that conclusion myself as I am not prepared to be humiliated by this man any longer. I have asked Sheila for details of private consultant, lab to interpret results and will write to consultant or visit GP to get blood results. Consultant said he'd write to GP and our surgery offers a printout of medical records for around £50 I think. Again thanks for the support - if there is any way I can help TPA please let me know as I would like to repay the support I've received.Kind regards [thyroidpatientadvo cacy] Where do I go from here? She was really sympathetic as has all the signs & symptoms of hypo but blood tests such she cant get ANY treatment!! Also got brain scan - my parting shot was 'hope they manage to find one as personally I think its on the way out!!' ------------ --------- --------- ------ Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi I know what you mean about the munchausen thing - you end up feeling like you have a big red hypochondriac stamp on your notes!!! Maybe we should all make up " hypothyroid not hypochondriac " T shirts to wear to each docs appt! Seriously, just wanted to say I'm so sorry you've had to put up with this and to reassure you you are in good hands here! Leah x I'd love to see my notes as I bet he's written I'm either suffering from munchausen, menopause , madness or all three!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008  HI You should not have to pay £50 just to get a copy of your blood test results. Have a look at this information that we have in our FILES Getting a Second opinion.doc If your surgery tries to charge you so much, then you must report them to your local Primary Care Trust. The thing about being ill is that many of us have to leave paid employment and live on State Benefits and others are pensioners. All you want is a look at those blood results and you can copy them on to a piece of paper yourself. Don't let your surgery bamboozle you with incorrect information. Yes, you can be charged for copying of some information but read what it says here and make up your own mind how to tackle them. Tell them you do not want a print out of the WHOLE of your records. Just your blood results. You can get your blood tested and also saliva tests through NPTech Services )attached_ and if you can't get the attachment, it is in our Files. I have sent you a copy of good doctors privately. Be assured though, that although these doctors are more open in their prescribing of other drugs apart from L-thyroxine alone, I know little of their bedside manner. Are you able to see Dr Peatfield at one his clinics near to you ? Luv - Sheila Thank you - yes I've come to that conclusion myself as I am not prepared to be humiliated by this man any longer. I have asked Sheila for details of private consultant, lab to interpret results and will write to consultant or visit GP to get blood results. Consultant said he'd write to GP and our surgery offers a printout of medical records for around £50 I think. Again thanks for the support - if there is any way I can help TPA please let me know as I would like to repay the support I've received.Kind regards .. No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.21/1458 - Release Date: 21/05/2008 07:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008  HI First, I am not a "!wonderful person". I am just an angry and very frustrated person who has gone through what you have gone through and what many of our members have gone through, who now knows, that without leaving the NHS to seek the advice of a private hormone consultant, there would be no TPA-UK and I would be in a wheelchair (if here at all). So, I decided that if I could be made well again by taking my health into my own hands, then others could too. So, instead of "wonderful" read "angry". I looked up Congescor and it says "Withdraw BISOPROLOL FUMARATE gradually over at least a week. Caution in asthma or other obstructive pulmonary disease" http://admin.safescript.com/drugcgic.cgi/INGR?86261953+0#INDIC. Have you thought of taking a high dose of Natural Niacin (vitamin B3) and high dose CoenzymeQ10. How long have you been taking Congescor? I would ask your GP to give you a trial of 50 mgs Co-Amilozide instead of the Bendroflumethaizide and see if that is better as a diuretic. You often need to try one or two to find out which works best for you. Ask your GP also about the B12 and what they are going to do about it. You need to have all these written down, and perhaps send your questions to him in a letter (always works) and keep a copy yourself. This letter has to go into your medical notes, so they make sure they follow it through. Don't allow this pip-squeak of a doctor to make you feel humiliated. It is time that we turned the tables on such ignorance and made them feel humiliated when they treat us like this. Good luck - today is the first day of your new life. Luv - Sheila PS - Will you please delete the messages attached to your response before clicking SEND. Ta! My GP put me on a very low dose diuretic Bendroflumethiazde 2.5mg about 6 months ago. It has helped although as I say I still can't get 'normal' shoes on. I get SVTs (pre dating the thyroid diagnosis) for which the consultant himself (or rather his minion) prescribed Congescor 1.25mg. He's now suggested I now stop taking for a month to see if I feel any more alert and learn to live with the palpitations as they aren't life threatening. As to the weight problem he told me to eat less and exercise more!! I only consume about 1000 kcals a day as it is!! .. No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.21/1458 - Release Date: 21/05/2008 07:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Hi , Yep...been there. Done that......and I too had a near miss whilst driving! The NHS treatment is shameful. Using the info and support on this site, I've gone down the self-treatment route, which to be honest I found a bit scary, but I'm really starting to reap the benefits now. At last, my brain is starting to work again and the tiredness is lifting. And I wasn't depressed either, just fed up with feeling so rotten and feeling completely incapable of finding any doctor who'd listen! Good luck with whatever you choose to do. Penny x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Hi ,                    I don’t know if you want your full records, but I just ask my GP for results as they come in and she tells me- no cost involved. My paper records are inches thick so I don’t know how much you feel you need……….  Just keep in contact- If we need help we’ll ask when we have another one on board.                                                    Subject: Re: Where do I go from here? and our surgery offers a printout of medical records for around £50 I think. Again thanks for the support - if there is any way I can help TPA please let me know as I would like to repay the support I've received. Kind regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Hi SheilaJust been to Dr P's website and he's definitely the man for me. What a refreshing change -and how good to hear someone who understands us!! Somehow I WILL scrape the money together to have a consult once I have all the bloods through. It may be a few more weeks before I get the last lot and we are away for 3 weeks from end of June. I could probably get to his clinic in Sussex in a day or possibly the Norfolk one if I have a few days off and stay with my sister who lives near Fakenham. Kind regards Re: Where do I go from here?  HI You should not have to pay £50 just to get a copy of your blood test results. Have a look at this information that we have in our FILES Getting a Second opinion.doc If your surgery tries to charge you so much, then you must report them to your local Primary Care Trust. The thing about being ill is that many of us have to leave paid employment and live on State Benefits and others are pensioners. All you want is a look at those blood results and you can copy them on to a piece of paper yourself. Don't let your surgery bamboozle you with incorrect information. Yes, you can be charged for copying of some information but read what it says here and make up your own mind how to tackle them. Tell them you do not want a print out of the WHOLE of your records. Just your blood results. You can get your blood tested and also saliva tests through NPTech Services )attached_ and if you can't get the attachment, it is in our Files. I have sent you a copy of good doctors privately. Be assured though, that although these doctors are more open in their prescribing of other drugs apart from L-thyroxine alone, I know little of their bedside manner. Are you able to see Dr Peatfield at one his clinics near to you ? Luv - Sheila Thank you - yes I've come to that conclusion myself as I am not prepared to be humiliated by this man any longer. I have asked Sheila for details of private consultant, lab to interpret results and will write to consultant or visit GP to get blood results. Consultant said he'd write to GP and our surgery offers a printout of medical records for around £50 I think. Again thanks for the support - if there is any way I can help TPA please let me know as I would like to repay the support I've received.Kind regards .. No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.21/1458 - Release Date: 21/05/2008 07:21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 I get my blood results free of charge and without any hassle. When I see my GP, the first thing he does is get my details up on his screen. He checks everything out and I ask what the results were of my last thyroid function tests. He says, "well, let's see, your TSH was blah, blah, blah...". Surely your doctor would give them to you that way. Take a pen and paper with you and jot them down, with the reference ranges. Luv - Sheila Subject: Re: Where do I go from here? and our surgery offers a printout of medical records for around £50 I think. Again thanks for the support - if there is any way I can help TPA please let me know as I would like to repay the support I've received.Kind regards No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.24.1/1463 - Release Date: 23/05/2008 15:36 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hiya A much cheaper way of doing it is to pay £10 and go in and look through your medical records which is what I did, makes the doc fairly nervous initially because of things they used to write on there before people used to go in and look at them. Take a pen and paper or a good camera and photograph or jot down what you want to. Upload your photos to your pc and hey presto. The practice manager or secretary usually sits in with you while you do this. lotsa luv Dawnx > I get my blood results free of charge and without any hassle. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2010 Report Share Posted May 18, 2010 So where do I go? Psa for 10 yrs + p all my life......Deal okay most of the time.....but I guess I feel like Im floundering anymore. Done the Humira, mexo, mix: liver problems. Enbrel worked great for awhile...Remicade no luck, Aravia effected pancreas Orcenia definitely didnt work....Now simponoi: Cant seem to shake metholyl predisonlone... need to stay on 4 mgs, now upping it again. If not major flares......Hands, an elbows so sore an ache from work. Hip has had two internal injections...told me 2-5 yrs hip replacement. Now looking into back issues also. also start of ostiopinini. I am feeling like there isnt a whole lot more help for me to deal with all the crap.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2010 Report Share Posted July 4, 2010 Miriam-- I wouldn't stop the iodine yet. The " 3 month " idea isn't Dr Brownstein's and we're all individual, there's no way that one size fits all on this. Many people who want to break through a specific illness will raise their iodine to a level where the detoxing is tolerable but definitely happening. Also, if you're not breaking through, it may be that you need to do some gallbladder and liver cleansing so that your detox pathways are more functional. And last, 3 months isn't enough time to undo years of damage. -- At 02:08 PM 7/4/2010, you wrote: >Are you doing the companion supplements? If not, definitely add those >in. You may also want to drop your iodine dose down for a few days until >some of those detox symptoms lessen. > > >~W > >On Sun, Jul 4, 2010 at 4:08 AM, miriam_hinch ><<mailto:miriam_hinch@...>miriam_hinch@...> wrote: > > >Hi, I have been on 50mg Iodoral for 3 months now, and am not sure whether >to continue or start tapering back to a maintenance dose of 12.5mg. It >isn't possible to get loading tests done here in the UK, unfortunately, so >I can't go by lab results. > >I have had some symptoms which could possibly have been detoxing. >Initially I had a runny nose for a week or so. I had a headache at one >point (which is rare for me). I've had aches in my hips and in my jaws. >Last week I had unexplained diarrhoea, but without the vomiting that >usually occurs with a tummy bug. > >I still have symptoms which I had hoped the iodine would fix. My brain fog >isn't any better, I had hoped it would improve my dry skin and inability >to sweat, and my basal (morning) temperature hasn't gone up. It is 36 C >(96.8 F). Also I was hoping it would help reestablish my stomach acid >production, and that hasn't happened yet. > >Any comments or suggestions please? > >Miriam > > > > > > >No virus found in this incoming message. >Checked by AVG - www.avg.com >Version: 9.0.830 / Virus Database: 271.1.1/2981 - Release Date: 07/04/10 >01:35:00 ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
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