Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 I'd first like to say thank you to TPA, I have learnt more useful information from your site than pretty much anywhere else! It's a shame it took me so long to get sorted and start looking. I was diagnosed with a hypothyroid just over 3 years ago. I'm currently on 100mcg Levothyroxine daily, and have been for a couple of years. It tooks years to get a diagnosis; my old GPs best musing (and he didn't diagnose me, the Practice Nurse did) was that it probably started when I was pregnant, 10 years ago, as I had had other hormonal complications during pregnancy. I bit my tongue then, he'd spent the intervening years telling me that my exhaustion and illness was down to being a mum/getting divorced/working/having elderly parents/having pets/being depressed. The last two years have been the worst for symptoms and the frustration of feeling permanently unwell was overwhelming. I also have terrible brain fog and would get terribly angry over the slightest things; feeling like I was constantly shouting at folk or having to ask my 10 yr old to do things like help me name a knife etc just left me terrified. My new GP is even worse, she loves the phrase " normal range " . I finally gave in and went to see a therapist last year who said that I wasn't depressed and just that was enough to start the fight back. She also taught me some coping techniques, especially for the brain fog; going to her was a good decision. I don't have many lab results (I've had a great many more tests but the official list from the GP lists 4 in 3 years) but my latest at the end of Dec were TSH 1.19 and FT4 11.8. I work for a pharma company and showed our onsite medical Professor, who said that the low FT4 might indicate a T3 conversion issue and that I should be getting my adrenals checked as I have adrenal stress specific symptoms. When I mentioned this to my GP last week she looked horrified, told me once again that my results were normal and then, after some arguing about " normal ranges " , that her lab has a FT4 range of 6-14. Threw my " but its not the top third of the range " argument right out of the window! Nothing I have ever read has stated that reference range? She also refused me any tests on my T3, saying that they are not available on the the NHS and/or any other treatment option, for the same reason. Her exact words were " what do you expect me to do? " . I have asked for a referal to a private endocrinologist, a Dr C. I can't trust her referal letter, she asked for a latest list of symptoms, heard the first three and said " we'll just say you're tired shall we " , so I need to get my act together for my appointment with Dr C. I know that I'm my own worst enemy in that I don't like listing every symptom (makes me feel pathetic!) and don't always explain myself well, but I need to find an end to this now, or at least a positive step in the right direction. Has anyone any tips or advice? Thank you, Lu. PS sorry if this is a little long winded! It's been building up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Hi there My heart goes out to you, I've been suffering from thyroid problems since I was 11 and feel I have a 'lost life' due to this frustrating disorder. I have seen many doctors and Endocrinologists over the years, all have been less than helpful and the 'what do you expect me to do' comment rings so true with me, I've heard it ad-infinitum. Although I am unwell again at the moment (I was persuaded to stop thyorid meds by me Endo last May) I had a major breakthrough when I discovered I had a lactose intolerance and cured all my bowel/digestive problems by eliminating that from my diet (I'm trying to say that there is hope!) Thyroid patients are no longer as alone as we once were, the internet and the availability of getting our own tests done has helped and this group will help you with lots of info and advice. You can be a lot better than you are now and this group will help you get there I'm sure. It's ridiculous that your GP won't do the right tests for you, can you afford to get them done privately? once you have all the results you need you can then make decisions about the right way forward for you. You are not alone and I so understand your reluctance to list the symptoms - it makes us all sound like hypochondriacs - and it's not our fault! Medical care for endocrine problems is very poor but you can get informed and there are now (thankfully) a lot of different avenues open - a lot of it due to this website. Take care Debs > > I'd first like to say thank you to TPA, I have learnt more useful information from your site than pretty much anywhere else! It's a shame it took me so long to get sorted and start looking. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Hello Lu First thing you need to do is to change your GP - she hasn't the ability to make you well again, her education and knowledge is far too poor and she obviously has no intention of bringing her reading up to date. How terrible that such doctors exist. However, before you do that, I would write her a letter and ask that this letter be placed into your medical notes so all your requests are recorded. I would tell her first that you are determined to find out the cause of your continuing symptoms and signs and that you hope she will work with you, according to the 'Duties of a Doctor Registered with the General Medical Council' http://www.patient.co.uk/doctor/Ideals-and-the-Hippocratic-Oath.htm Unfortunately, some doctors DO need reminding that they are not yet God, and that they MUST work with the patients and listen to their concerns. Then go on to list every single symptom and sign that you are suffering, however long this list might be. (Sorry Lu, you really DO need to do this) Check yours against those in our web site www.tpa-uk.org.uk under 'Hypothyroidism'. Next, list all the tests you need to check your full thyroid function i.e. TSH, free T4, free T3 and TPO and Tg antibodies. Ask also that the following specific nutrients are tested to see whether any of these are low in the reference range. If any are showing low levels, no thyroid hormone replacement (and not even your own) can be fully utilised at the cellular level until whatever is low has been supplemented. This is VERY important, and I have attached a list of references to the medical research/clinical trials that have been done to show the association between low levels of these and low thyroid. The tests you need are iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. Ask that all the blood test results are made available to you together with the reference ranges for each of the tests done. I too have never heard of a free T4 reference range of 6 to 14, You could, of course, always telephone the laboratory at your local hospital and ask them what the reference range is that they use for free T4. You should mention also that free T3 testing is available within the NHS and also the active thyroid hormone T3 (triiodothyronine) is available for prescription by NHS doctors for those suffering with hypothyroidism in the British National Formulary . No doctor can withhold any blood test results or any other information that is in your medical notes under the Data Protection Act 1998. Tell her that you need these results because it actually matters whether the results are at the bottom, the middle, the top or even outside of the range and that results that are within the 'normal' range does NOT mean that they are 'normal''. Ask in your letter for a copy of the referral letter she has written to Dr C. Again, she cannot withhold this from you. Tell her that you would need this copy within the next 7 working days. End your letter by asking for it to be placed into your medical notes. Doctors pay a lot more attention to the written word than they do face to face consultations behind closed doors, where they can deny certain conversations ever took place, so you could well get more action this way. Let us know how you get on Lu. See the other attached document listing several associated conditions that go along with having symptoms of hypothyroidism that should be checked through to see if you might be suffering with one of these. If you can't see an attachment, let me know and I will send these to you privately. Luv - Sheila I can't trust her referal letter, she asked for a latest list of symptoms, heard the first three and said " we'll just say you're tired shall we " , so I need to get my act together for my appointment with Dr C. I know that I'm my own worst enemy in that I don't like listing every symptom (makes me feel pathetic!) and don't always explain myself well, but I need to find an end to this now, or at least a positive step in the right direction. Has anyone any tips or advice? Thank you, Lu. No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1901 / Virus Database: 2109/4749 - Release Date: 01/17/12 2 of 2 File(s) WHY THYROID HORMONE REPLACEMENT MAY NOT BE WORKING FOR YOU.doc MINERALS AND VIT. TESTING.doc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Hi there , i know this is not what you wont to hear , but your doctor is not the best person to see if you have hypo symptoms. you need to ask for an auto-antibody test (TPOab). and see a immunologist. doctors don`t get that much training and don`t like you to no this! they try and fob you of with any excuse.go to our files and find the one about doctors quotes etc: most hypo/hyper are autoimmune and are hard to define. Angel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Hi Debs, Thanks for the note I too have found a link with dairy. I started a vegan " experiment " last year after a good friend with severe diabetes started to eat vegan and discovered that it did wonders for her numbers. As I feed a 10 yr old and my boyf too, we compromised on vegan/vegetarian options for dinner but the rest of the time I am vegan. Prior to that my digestive system was so shot that I spent most of every day retching and nauseous, it didn't stop from the moment I woke up. Two weeks after turning vegan (which I did overnight and was very strict with at the start) I felt like me again for the first time in years! Its been nearly 9 months now, and although the " cure " didn't last more than a few weeks, certainly my digestive system is 80% better most of the time. And the exhaustion and all the rest seems a lot easier when you're not running to be sick every couple of hours! I wouldn't go back to eating meat now, I don't even tolerate fish very well though I will have that or a heavier (cheese/cream) vegetarian meal if we go out and there is no other option - i just know that i'll suffer for it the next few days! I am looking forward to learning more from the group and have stocked up on books like Stop the Thyroid Madness too... I feel a little like I'm studying for an exam, but it is a great relief to be more knowledgable. Thank you, take care, Lu > > > Hi there > > My heart goes out to you, I've been suffering from thyroid problems since I was 11 and feel I have a 'lost life' due to this frustrating disorder. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Hi Debs, Thanks for the note I too have found a link with dairy. I started a vegan " experiment " last year after a good friend with severe diabetes started to eat vegan and discovered that it did wonders for her numbers. As I feed a 10 yr old and my boyf too, we compromised on vegan/vegetarian options for dinner but the rest of the time I am vegan. Prior to that my digestive system was so shot that I spent most of every day retching and nauseous, it didn't stop from the moment I woke up. Two weeks after turning vegan (which I did overnight and was very strict with at the start) I felt like me again for the first time in years! Its been nearly 9 months now, and although the " cure " didn't last more than a few weeks, certainly my digestive system is 80% better most of the time. And the exhaustion and all the rest seems a lot easier when you're not running to be sick every couple of hours! I wouldn't go back to eating meat now, I don't even tolerate fish very well though I will have that or a heavier (cheese/cream) vegetarian meal if we go out and there is no other option - i just know that i'll suffer for it the next few days! I am looking forward to learning more from the group and have stocked up on books like Stop the Thyroid Madness too... I feel a little like I'm studying for an exam, but it is a great relief to be more knowledgable. Thank you, take care, Lu > > > Hi there > > My heart goes out to you, I've been suffering from thyroid problems since I was 11 and feel I have a 'lost life' due to this frustrating disorder. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Thanks, will do > > Hi there , i know this is not what you wont to hear , but your doctor is not the best person to see if you have hypo symptoms. you need to ask for an auto-antibody test (TPOab). and see a immunologist. doctors don`t get that much training and don`t like you to no this! they try and fob you of with any excuse. > go to our files and find the one about doctors quotes etc: most hypo/hyper are autoimmune and are hard to define. Angel. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Hi Sheila, Thank you! I've printed everything out and will have a proper read. In the meantime, our medic at work has checked out Dr C and says he's worth a look. My GPs, having told me to arrange the appointment, then arranged themselves for next week, which would mean that I wouldn't have all the blood tests back. I've cancelled it to reschedule when the results come in - not much point in " saving me money " if they're still in a lab somewhere when I go see the man! I do have your checklist, thank you, I printed it off a while ago and have an earlier one from the STTM site. I pulled them out and filled out a third, it's interesting to see the patterns. I also have an adrenal symptoms list which I was given. I am going in to the surgery for my bloods tomorrow so will take in the letter with the list of things I require and I will have everything clearly listed in advance of my first meeting with Dr C. Thank you, I'll let you know how I get on. In the meantime, wish me luck for tmrw... as luck would have it, I'm terrified of needles! Lu > > > > Hello Lu > > First thing you need to do is to change your GP - she hasn't the ability to > make you well again, her education and knowledge is far too poor and she > obviously has no intention of bringing her reading up to date. How terrible > that such doctors exist. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Hi Elle I have sent the attachments to you privately. I would write to your GP if you have 'doctor phobia' and keep your letter nice and short and polite, and just mention that you have been doing some research in your quest to regain your optimal health and learned through the Registered Charity Thyroid Patient Advocacy www.tpa-uk.org.uk that if specific minerals and vitamins are low in the range, no amount of thyroid hormone, not even your own is able to be fully utilised at the cellular level until whatever is low has been supplemented…and then go on to ask for the following tests to be done - iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3,magnesium, folate, copper and zinc. Also, I have sent you an attachment privately to references to show the research/studies that have been done to show this. Print that off (well, just the references and not the information underneath) and enclose it with your letter. Your GP can learn more about us by visiting our web site above. Ask your GP if he will contact you when it is convenient to go in to get those tests done. Pop it in the post Bob's your Uncle! > Are you taking Selenium 200mcgs daily, > large doses of vitamin C 3/4000mcgs and zinc. I'm not at present although have tried them in the past with no improvement. You need Selenium 200mcgs daily, zinc, vitamin B Complex and Vitamin C as routine. My last thyroid blood test results on 5/1/12 (taking 75mcg/100mcg thyroxine at night on alternate days) were: TSH - 0.70 (0.27 - 4.20) FT4 - 17.6 (11.8 - 24.6) These are where I would expect them to be on T4-only, but this test doesn't show whether your cells are getting the thyroid hormone they need to keep them properly functioning. Luv - Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Hi Chris Thank you for your reply and the for the info about vitamin A and the book you mention. Do you get naturehtroid on the NHS? No I got nature throid/armour privately but at present I am back on thyroxine as the private doctor (AJW) I was using is no longer prescribing. > Have you looked into nutrient and other hormonal deficiencies associated with thyroid? You mention the nutri adrenal helping I think - do you still take that? I have had quite a lot of tests when under AJW and also had my hormones tested previoulsy. I am going to post some test results soon when I get them all looked up! Interestingly since you mentioned about the hormones I have looked up some previous test results. These were taken years ago and it shows where my brain has been since then because I have just noticed that the FSH and LH appear to be out of range, having never noticed before! They are reported as normal as the doctor didn't ask me what day of my menstrual cycle I was on. However I was on day 17 which I assume to be mid-cycle. I can't actually find any websites to confirm this at the moment but day 17 seems about mid-cycle! Looking at the reference ranges for mid-cycle they are FSH 5.8-21.0 and I was 5.2 and for LH reference range 17.0-77.0 and I was only 5.2! I don't know if these automatically improve with thyroid treatment so maybe that will be another post for me to put on the forum sometime! I have always felt I have symptoms of low oestrogen and my test result for this was oestradial 250 (ref 124 - 1468) so within the range but at the lower end. I do still take the nutri-adrenal which does help a little with my muscles problems. Anyway thanks again for your reply Love Elle x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Hi Elle Read the following information. There are MANY reasons and many medical conditions associated with thyroid disease that stop thyroid hormone from getting into the cells, where it does its work. I mention these over and over and over again - ad nauseum - people must be bored with the same old story. but as each new member joins us, they need to know. The main condition responsible for stopping thyroid hormone from working is, quite simply, a patient’s thyroxine dose is too low because the doctor or consultant refuses to increase it, because the serum thyroid function test results appear OK. Sometimes, the thyroxine dose is too high, yet patients still don't feel well. They continue to suffer. Some reasons for this: They may be suffering with low adrenal reserve. The production of T4, its conversion to T3 and the receptor uptake requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however.) This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn’t. If the illness has been going on for a long time, the enzyme seems to fail. This conversion failure (inexplicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn’t work, and T4 toxicosis results. This makes the patient feel quite unwell, toxic, often with palpitations and chest pain. If provision of adrenal support doesn’t remedy the situation, the final solution is the use of the active thyroid hormone, already converted, T3 - either synthetic or natural. Then, we have systemic candidiasis. This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer terrible sweet cravings. Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels - which we usually test for - can be very high, and make successful treatment difficult to achieve until adequately treated. Then there is receptor resistance which could be a culprit. Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors, is downgraded - so the T3 won’t go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually. And then there are Food allergies. The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid. There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake. Then we have hormone imbalances. The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function. Then, we must never forget the possibility of mercury poisoning (caused through amalgam fillings) - low levels of iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc - all of which, if low, stop the thyroid hormone from being utilised by the cells - these have to be recognised and treated. As Dr Peatfield says " When you have been quite unwell for a long time, all these problems have to be dealt with; and since each may affect the other, it all has to be done rather carefully”. Contrary to cherished beliefs by much of the medical establishment, the correction of a thyroid deficiency state has a number of complexities and variables, which make the treatment usually quite specific for each person. The balancing of these variables is as much up to you as to me – which is why a check of morning, day and evening temperatures and pulse rates, together with symptoms, good and bad, can be so helpful. Many of you have been ill for a long time, either because you have not been diagnosed, or the treatment leaves you still quite unwell. Those of you who have relatively mild hypothyroidism, and have been diagnosed relatively quickly, may well respond to synthetic thyroxine, the standard treatment. I am therefore unlikely to see you; since if the thyroxine proves satisfactory in use, it is merely a question of dosage. For many of you, the outstanding problem is not that the diagnosis has not been made – although, extraordinarily, this is disgracefully common – but that it has, and the thyroxine treatment doesn’t work. The dose has been altered up and down, and clinical improvement is variable and doesn’t last, in spite of blood tests, which say you are perfectly all right (and therefore you are actually depressed and need this fine antidepressant). The above problems must be eliminated if thyroid hormone isn't working for you. Luv - Sheila > Have you looked into nutrient and other hormonal deficiencies associated with thyroid? You mention the nutri adrenal helping I think - do you still take that? I have had quite a lot of tests when under AJW and also had my hormones tested previoulsy. I am going to post some test results soon when I get them all looked up! Interestingly since you mentioned about the hormones I have looked up some previous test results. These were taken years ago and it shows where my brain has been since then because I have just noticed that the FSH and LH appear to be out of range, having never noticed before! They are reported as normal as the doctor didn't ask me what day of my menstrual cycle I wa No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1901 / Virus Database: 2109/4760 - Release Date: 01/22/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Hi Sheila Thank you for sending the attachments. I have found some test results that I have already had from the ones you listed. When you mention asking for iron to be tested I assume you mean the haemoglobin level or is it something different you mean for that? I also have some other test results which I think are linked with iron so will list those in case they are relevant. The test results I have are: Ferritin - 126 (14 - 148) Vitamin B12 730 (160 - 925) serum folate 13.8 (2.0 - 20.0) haemoglobin - 12.7 (11.5 - 15.5) mean cell haemoglobin 28.7 (27 - 33) mean cell haemoglobin concentration 32.4 (31 - 37) haemocrit - 0.391 (0.35 - 0.47) mean cell volume 88.5 (80 - 98) red blood cells 4.42 (3.9 - 5.4) As far as the remaining tests go I will be going to see my GP at some point about prescribing erfa so I will see how that goes and if I feel confident enough at the end to ask about the other tests. If not then writing is a good idea! Thanks again Love Elle x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Thanks again for all the info Sheila. Love Elle x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 Hi Elle Ferritin - 126 (14 - 148) - This is fine and dandy. Vitamin B12 730 (160 - 925) - B12 is also excellent serum folate 13.8 (2.0 - 20.0) - Folate is good. haemoglobin - 12.7 (11.5 - 15.5) - a little too low- did your GP comment on this? mean cell haemoglobin 28.7 (27 - 33) - same comment as above. mean cell haemoglobin concentration 32.4 (31 - 37) - same comment as a Love Elle x No virus found in this message. Checked by AVG - www.avg.com Version: 2012.0.1901 / Virus Database: 2109/4764 - Release Date: 01/24/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2012 Report Share Posted January 27, 2012 Hi Sheila My GP didn't comment on any of the levels - just the usual 'normal no action needed'. I have tried iron supplements in the past (just as part of a general multi vit really) but have always been unsure what dose I would need and about finding something that was gentle on the stomach if I took anything higher than just what was in an ordinary vit/min supplement that gives 100% RDA. My mum takes the floridix iron supplement (as she has very low ferritin) which is meant to be one of the most gentle ones but it has kelp in and I have thyroid antibodies so think I am meant to avoid kelp. Also I was worried if I took iron that it might increase my need for more thyroxine as I have read it can reduce the absorption of thyroxine. However trying to get more thyroxine at present anyway is tricky! I do try to eat a diet rich in iron - wholegrain cereals, green leafy veg, lentils, chick peas, spinach, beans etc. Would you think I would need to be doing more than that? Thanks very much for any advice! Love Elle x haemoglobin - 12.7 (11.5 - 15.5) - a little too low- did your GP comment on > this? > mean cell haemoglobin 28.7 (27 - 33) - same comment as above. > mean cell haemoglobin concentration 32.4 (31 - 37) - same comment as a > > Love Elle x > > > > _____ > > No virus found in this message. > Checked by AVG - www.avg.com > Version: 2012.0.1901 / Virus Database: 2109/4764 - Release Date: 01/24/12 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2012 Report Share Posted January 27, 2012 Elle - if any of the specific minerals and vitamins that we ask our members to get checked are found to be low in the reference range, that they get them supplemented because unless you do, no amount of thyroid hormone can get into the cells. Many people find that once these have been properly supplemented and their levels start to rise in the reference range, they actually find they need less thyroid hormone replacement. With your results you should be taking some form of elemental iron supplement. Have you considered trying Spatone http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/spatone/. Many do well on this and it is more gentle apparently than Ferrous Fumerate or Ferrous Sulphate. If you take the latter you should start with taking 200mgs daily with food if your iron levels are not too low. If they are low, take 200mgs three times daily. You should also take high doses of vitamin C e.g. 3/4000mgs daily to help with the iron absorption. Some doctors know nothing about test results. Ever test done has it's own individual reference range, and if your results appear ANYWHERE within that range, whether right at the bottom, the middle or right at the top of the range, they will tell you that your results are NORMAL. Quite appalling. Luv - Sheila My GP didn't comment on any of the levels - just the usual 'normal no action needed'. I have tried iron supplements in the past (just as part of a general multi vit really) but have always been unsure what dose I would need and about finding something that was gentle on the stomach if I took anything higher than just what was in an ordinary vit/min supplement that gives 100% RDA. My mum takes the floridix iron supplement (as she has very low ferritin) which is meant to be one of the most gentle ones but it has kelp in and I have thyroid antibodies so think I am meant to avoid kelp. Also I was worried if I took iron that it might increase my need for more thyroxine as I have read it can reduce the absorption of thyroxine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Hi Sheila Thanks for your reply. I'll give the spatone a try and see how I get on. If I get my haemoglobin checked after being on the spatone for a while what level do you think it needs to be at in the reference range (the range at our hospital is 11.5 - 15.5) so that the thyroid hormone can get into the cells? Also do you need to stay on the iron indefinitely or is it something you can come off as your thyroid improves? Thanks again Love Elle x > > With your results you should be taking some form of elemental iron > supplement. Have you considered trying Spatone > http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/spatone/. Many do > well on this and it is more gentle apparently than Ferrous Fumerate or > Ferrous Sulphate. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Once your iron levels have built up, you can then wean off supplements and keep your iron levels where they should be by eating foods high in iron. In the range you quote, I would aim to get it three quarters up the range. Luv - Sheila Thanks for your reply. I'll give the spatone a try and see how I get on. If I get my haemoglobin checked after being on the spatone for a while what level do you think it needs to be at in the reference range (the range at our hospital is 11.5 - 15.5) so that the thyroid hormone can get into the cells? Also do you need to stay on the iron indefinitely or is it something you can come off as your thyroid improves? Thanks again Love Elle x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Hi Sheila Please can you explain something to me with reference ranges which has always confused me. I have just been looking at some older haemoglobin results which ranged between 12.2 and 13.2 with a reference range of 13.5 - 17. These were done at a different hospital to the result I already posted and were all below the reference range, although nothing was ever mentioned to me about them being below the range which is quite suprising considering I had an ME/CFS diagnosis. Anyway what I always wondered is why there are differences in reference ranges at different hospitals and whether it indicates the blood is tested in a slightly different way? So for example if I was to get my haemoglobin level up to three quarters up the range of 11.5-15.5 it would need to be about 14.5 but if I needed to get it three quarters up the reference range of 13.5 - 17 it would need to be about 16-16.5. However if I got it up to 14.5 whichever refence range I used would it still be the same haemoglobin level? I hope I'm making sense here - I guess what I'm trying to say is if it was 14.5 in a reference range of 11.5-15.5 is that the same as if it was 14.5 in a reference range of 13.5-17 or is the blood tested in a slightly different way if the refence ranges are different. This is something that has always confused me even with thyroid levels because reference ranges are always slightly different at different hospital for TSH etc and I never know if it still means the level means exactly the same thing from hospital to hospital. Also I have just been looking online at the various tests you recommend I get. I notice there is an iron test you can have aswell as the haemoglobin. Would you recommend I have the iron test or is the haemoglobin enough to measure this? Thanks very much, I am really grateful for your advice. Love Elle x > In the range you quote, I would aim to get it three quarters up the range Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Anyway what I always wondered is why there are differences in reference ranges at different hospitals and whether it indicates the blood is tested in a slightly different way? Each laboratory have their own individual testing kits, made by different firms, and each 'kit' has it's own specific reference range. The blood is tested in the same way (if it is a blood test) as any other hospital. So for example if I was to get my haemoglobin level up to three quarters up the range of 11.5-15.5 it would need to be about 14.5 but if I needed to get it three quarters up the reference range of 13.5 - 17 it would need to be about 16-16.5. When I mentioned about your result needing to be about three quarters up the range I was talking about the specific reference range you gave me. But basically yes, certain tests need to have their results down near to the bottom of the range, around the middle of the range or at the top of the range to be what is considered 'normal' whatever reference range the different hospitals used. Also I have just been looking online at the various tests you recommend I get. I notice there is an iron test you can have aswell as the haemoglobin. Would you recommend I have the iron test or is the haemoglobin enough to measure this? Blood Centres generally measure hemoglobin levels. Often, it is called an " iron " test, because lots of people don't know what haemoglobin is. Luv - Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Thanks Sheila, Please can I just ask one more thing about the tests. If I get my haemoglobin up to about 14.5 do I still need the transferrin saturation % test? If I do and my GP asks the reason why I would need this test please can you let me know what I should say?! Love Elle x > > Also I have just been looking online at the various tests you recommend I > get. I notice there is an iron test you can have aswell as the haemoglobin. > Would you recommend I have the iron test or is the haemoglobin enough to > measure this? > > Blood Centres generally measure hemoglobin levels. Often, it is called an > " iron " test, because lots of people don't know what haemoglobin is. > Luv - Sheila > Quote Link to comment Share on other sites More sharing options...
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