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    Old 04-14-2008, 12:35 AM   #1
    Audrey-B
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    Update and FINALLY some answers

    Don't know where to start and am so overwhelmed by all the new info i have received about my situation. As some of you know it's taken me roughly 2 years to get my ferretin from 8 to 61, spending most of those 2 years in the 8 to 35 zone, then when it hit 61 i was scared that stopping the iron would bring my figures back down again. Also i'd say most of you know that i was diagnosed with Hashimoto's Thyroiditis about 6 weeks ago. My new doctor gave me a saliva and stool tets to do myself at home. Neither were nice tests to do, but now that the results are back i'm glad tests like these exist as they go such a LONG way into explaining what is going on within our bodies.

    Today i went back to my thyroid doctor to get my results. The stool test showed that i'm not processing my protein well at all and it ends up fermenting instead. This process is just one of the culprits in causing inflammation of my thyroid and leading to thyroid problems as well as stopping my system from absorbing the nutrients from the protein foods. To fix this problem and get my system properly processing and absorbing protein i have to take a tablet 3 times per day. This doctor believes that the lack of protein my body was getting has led to a form of malnutrition and is the reason i have been losing my hair.

    The saliva test, which i repeatedly did 4 times in the one day, tested various hormones. The big issue was that i'm not making near enough cortisol and my adrenal system is stuffed, so when i wake up in the mornings i'm already partially depleted. By lunch time i've hardly got any left and by afternoon and evening i've got none left. Due to being depleted in cortisol on a daily basis my system has to borrow from testosterone. Due to the cortisol being so low, this makes a person tired, grumpy, impatient, anxious, overwhelmed by minor things and the big one.........BRAIN FOG and general tiredness. I have to take a cortisol tablet every lunch time.

    The saliva test also showed that my Oestregen was way too high. This and the other hormones which are out of line would be what is also causing my menstrual issues. The saliva test is sooo much better than all those blood tests for hormone levels i think. I always came back fine on those blood tests, but the saliva test is done over an entire day from early morning till late at night so it gets your hormone reading throughout a whole day.

    I am now on a low dose of T3 thyroid treatment and haven't heard of anyone on here being on the particular type of brand, but perhaps one brand has different names in different countries. It's called Thyronine and it's in capsule form and i have to take it twice per day, but apparently i CAN take it close to iron as it has a slow absorbtion rate or some such thing, but still i think i'll take it apart "just in case".

    Then, to top things off, this new doctor got me to do a metabolic rate test today. For my age, height etc my rate is supposed to be around the 1,300 and something mark, but mine was around 700 or 900, can't remember now which, but it's one of those and it's slow anyway.

    The thing is now, i'm not overweight and with the amount of food i eat and don't put on weight that easily i thought for sure my metabolism would come up as being super fast, so it was a shock to find it slow!! What worries me now, with going on all these meds and fixing my health and likely my metabolism, does this mean i'll lose weight??? The only explanation to my weight being good with a slow metabolism is that my Short Chain Fatty Acids came up excellent and the best he has ever seen. He said this was connected to processing of Carbohydrates. As most people tend to put on weight eating carbs, perhaps that's why i haven't put hardly any weight as my system processes the carbs so well. Oh well, guess i had to have at least one good thing going for me

    So once i get all fixed up and things start working the way they should, particularly the protein processing, i shouldn't need the iron supplements. Hopefully i'll be able to finish with the herbal liquid which is correcting my menstrual cycle too. Then again, i'm trading one lot of med's for another.

    I was in a state of shock when i came out of his office. To think 2 years ago i thought i was simply dealing with a common low iron problem.

    To think all these years doctors have been telling me my thyroid tests were fine and 'within range'.

    Well i must have a guardian angel at my side who helped me find this new doctor as the chemist told me that this doctor has patients who fly in from interstate just for a consultation and then fly home and that he isn't taking on any new patients. Then again, i have done my own fare share of digging and digging and never giving up till i found someone who would listen and help. I would urge anybody else who feels that things simply aren't right to never give up and don't put up with a bad doctor who isn't interested in helping your cause.

    Hoping this new spin on certain things helps somebody else and thanks to everybody for their support, help and advice

     
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    Old 04-14-2008, 02:11 AM   #2
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    Re: Update and FINALLY some answers

    audry, im glad youve finally got some answers. i didnt know they could do saliva tests for hormones, this is very interesting, i dont think my doctor would do it, do you think i can buy them to do at home? also what are you taking to correct your mensrtual cycle, if you dont mind me asking

     
    Old 04-14-2008, 07:43 AM   #3
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    Re: Update and FINALLY some answers

    Audrey--Unfortunately your story is starting to sound a little like mine. Hashi's, malabsorption, hair falling-out and I have been discussing Adrenal Fatigue with my Endo as well. I understand how you are feeling because this is another thing we have in common. When I went to the GI doc and found out that I have malabsorption going on (from Nexium), after 1 year and being told that it was from heavy periods by all other docs, It was extremely overwhelming. He asked, do I understand and I said, yes! I knew exactly what he was saying because this was my BIG concern 1 year ago and I asked the Hematologist if that was my problem then. In addition, of course the heavy periods that I was having needed to be corrected to say the least. His answer was have a GB if I want to have malab. So, I didn't ask any questions because I was so floored that I was getting a DX after all this time. Well, by the time I got home I had lots of questions. Now I am playing over the phone question and answers sessions, and I hate it.

    I am really concerned to say the least about malabsorption. I have read that mineral malab.. is of not only iron but also, calcium, phosphorus, magnesium, zinc and iron. All of these need gastric acid, which I am low on. I already knew that iron, zinc and copper work in unison and excess of any one of these will automatically deplete stores in the other 2. This is why I take a prenatal until I get doctors to test for more things which they all want the other one to do OR I have to come up with the idea on my own. The thing is I'm really getting tired of having to ask for things, I'm not the one with MD after my name.

    My sister keeps telling me that the hair problem is from lack of protein. In her case she had GB and in the beginning after surgery she had lost a lot of hair. It's all back now, better than ever! So, when I complain of the hair issue, she say it's protein. After reading your post maybe this too is my problem. Audrey perhaps this will stop your hair from extra shedding once and for all.

    I'm waiting to hear from my doc about doing the stool test as you have done for mal. I really hope they do that. Do you know what all it tells them? I know it is not a fun test, I had to do the 3 day occult blood test in the beginning.

    I'm really happy for you that you are finally getting to the bottom or just the beginning of what is really going on with you. Isn't it a relief though to know that there are more reasons for feeling like crap for so long? I guess we all need validation after such an ordeal. I hope your new tabs help you to feel better. Keep us posted on your success. I hope the T3 meds help you too. I don't know if you read my post but I have now gone Hyper for the first time, that I know of! And yes, I agree with the fact that it is NOT enough to just begin iron supplements without finding the reason for the anemia. That is the first thing my Endo told me. Anemia as we all know, is a symptom not a disease in itself! Thanks for your post. FLFLOWERGIRL

    Last edited by FLFLOWERGIRL; 04-14-2008 at 02:24 PM. Reason: forgot a word.

     
    Old 04-14-2008, 11:51 AM   #4
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    Re: Update and FINALLY some answers

    FLFLOWERGIRL,

    Good luck on finding the success that Audrey did with the testing. The majority of mainstream doctors will not run any of these test that Audrey mentioned as they are deemed "snake oil" here in the U.S., sorry to see. Many of these tests have not received FDA approval so that is why the docs here will not perform them. Often you can find a naturopathic physician who will perform them but it will be on your dime.

    There is a stool test done for malabsorption that you can do on your own. I can post the info here, of course, but there is a major U.S. lab that does this type of "alternative" testing and it is several hundred dollars.

     
    Old 04-14-2008, 01:01 PM   #5
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    Re: Update and FINALLY some answers

    Wow, Audrey, that is a lot of info!! I am so glad that you have a doctor to work with. It sounds like you have really gotten to the root of your problems. Unfortunately, I'm still fooling around with limited information as well as limited doctor knowledge/help.

     
    Old 04-14-2008, 02:49 PM   #6
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    Re: Update and FINALLY some answers

    Christine--When I spoke to the GI office the other day the MA suggested the Malabsorption stool test to run by the doc. Then after I told the Endo that I had iron malabsorption from Nexium, he thought I should have Celiac (no, they didn't run that one yet) testing because many people have it and don't know they do, and the stool test he brought up.

    I have sore heels that I thought was thyroid related and Endo thinks is a B deficiency. This is why he thinks that I should have these two tests done. So I don't think it will be hard, hopefully. I'm waiting to hear what the GI doc says. Endo wants GI to run tests. I am not asking for the same testing as Audrey, just stool malabsorption. My Endo said, if I have symptoms of Adrenal Fatigue that he would test me for that. That's about it in a nut shell.

    I would like to know what vitamins and minerals I might be deficient in. Is there a "non- snake oil" test for that OR are they all separate? Do you have any info on that stuff? TIA FLFLOWERGIRL

     
    Old 04-14-2008, 02:54 PM   #7
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    Re: Update and FINALLY some answers

    Okay, so it sounds like the stool test that they will run for malabsorption is just one where they measure "fat" in the stool. There are other tests, that are not "approved" where they can actually sort of detect gluten intolerances (not necessarily celiac). They are pretty intensive tests and a lot of people have been helped by them. I never did it because I'm cheap!!

    As for the vitamin tests for deficiencies, I think they can all be tested via regular blood work.

    The saliva tests for estrogen are not "mainstream" yet but you can often get them done through a naturopath at your own cost. It will be nice when we have the option to have all these things done. But until many more studies come out on their accuracy, it won't happen.

     
    Old 04-14-2008, 03:39 PM   #8
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    Re: Update and FINALLY some answers

    Christine--Thanks so much, so I will push for further blood testing for vitamins and minerals. I shouldn't have to do this, you would think they would just check any type of deficiencies related to malabsorption.

    I think this is why my hair is falling out. I asked about Synthroid causing hair loss and he said, only in high doses. Don't you take high doses and your hair doesn't fall out, right?
    FLFLOWERGIRL

    Audrey--Sorry, I didn't mean to intrude in on your wonderful thread. You know how we are here, brainstormers! Thanks for the use of your thread. I really am happy for you. FLFLOWERGIRL

     
    Old 04-14-2008, 03:48 PM   #9
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    Re: Update and FINALLY some answers

    I am somewhat suppressed with Synthroid and, no, hair falling out has not been a problem. The only time I ever lost hair was when I was taken off my Synthroid for 6 weeks. I got very, very hypo (TSH at around 145). At the end of that 6 week period I started shedding a LOT of hair. Once my TSH stabilized, so did my hair. It is a very common occurance in thyroid patients who have had to go through this process.

    Also, I "talk" to many thyroid cancer survivors--all on Synthroid--and hair loss has not been a major issue with any of us. I will say that I do know of several people who do have hair loss and they actually don't seem to have any known issues at all. If anything, it is due to perimenopausal type stuff.

     
    Old 04-14-2008, 06:03 PM   #10
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    Re: Update and FINALLY some answers

    I cannot imagine 145 TSH WOW, I would be comatose, I can't even handle the low end double digits.

    Gosh, I wasn't thinking about perimenopausal stuff . I don't want to think about that too! But I am fishing for answers and perhaps that should be considered.

    The Endo did say that the low iron was the cause of my extreme hair loss when ferritin was under 10 sooooooo long. Maybe the amount of hair loss now is normal for me. I am more concerned about the absorption. I was curious to see if what he said was correct or not. Thanks again. FLFLOWERGIRL

    PS--Hope your new job is going well for you. Soon I will be in high gear and able to return to work

     
    Old 04-15-2008, 02:05 AM   #11
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    Re: Update and FINALLY some answers

    help wanted - apparently hormonal saliva testing has been around since the late 1960's. My Thyroid doctor gave me the kit and instructions. Basically i had to fill 4 small containers up to a certain level with saliva at 6am, 1200noon, 6pm and 10pm and freeze them until i could post them off. It was an expensive test ($210 Australian) and i don't get any of the money back through our medicare system. I will try to get some of the money back when i do my end of financial year tax return. Even if i don't get a cent back it's well worth it as blood tests don't do the job.

    The difference between blood v's saliva testing for hormone activity is that saliva measures free "bioavailable" hormone activity, while a blood test does not. The saliva test tests your oestrogens, progesterone, testosterone, DHEA-S, cortisol and melatonin.

    Maybe you could start asking around for this type of test. As i said before, i've had loads of blood tests for hormone levels, even way back when i couldn't fall pregnant. This test would have been so handy, but if you don't know something exists and your doctor isn't offering it, you don't know to ask for it.

    The herbal liquid i'm taking to correct my menstrual cycle is one i get from a naturopath. It only works while i'm taking it. If i got off it for a couple of weeks i noticed changes with my next cycle. I now know my cycle is out due to my hormones being out of balance. To think doctors simply wanted me to take the pill, when all along i knew something was wrong as my cycles used to be perfect. Really makes me angry!!

    Last edited by Audrey-B; 04-15-2008 at 02:09 AM.

     
    Old 04-15-2008, 02:31 AM   #12
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    Re: Update and FINALLY some answers

    FLFLOWERGIRL - it's great getting a tonne of info, but at the time you are so excited or nervous that you think you are taking it all in, then you get home and it's so overwhelming and you find you can't recall bits.

    Now i appear to be absorbing my iron supplements well and the doctor got the nurse to do another blood test yesterday to check my thyroid levels, my vitamin D and my iron. He also stressed the importance of vitamin D. After these tests, it really does seem that my issue is something to do with the pancreas. I don't know much about the pancreas or it's role in the body, apart from the obvious. Will have to research that.

    Perhaps we would have been better off consulting your sister regarding the hair loss and the protein issue I'm still bowled over about the doc laying odd's on my hair loss issue being something going on in the stomach/bowel/digestion/processing department during my very first visit to him, prior to any tests being done, simply from what i verbally told him, but he had to have the tests done to confirm things. I was certain it would be thyroid alone related. Apparently it's something to do with the pancreas not working properly and it then causes the problems with my system processing protein. My previous doctor who i consulted about my iron always did say "amino acids are the building blocks of protein and hair is 98% protein". When you look at it like that i guess it stands to reason you would lose hair if protein isn't getting processed and simply ferments till you do a bowel movement. Hmmm, nice!!

    The stool test was in kit form like the saliva test. It's all DIY and you send it off with a courier to the lab. You get 3 containers, you do your bowel business in the morning and then fill each container to a certain level with your "business", which you need to collect from start, middle and finish so that the lab can get a correct analysis of your entire bowel motion. I couldn't believe i was doing this, but when it's your health at stake i guess you will do anything.

    The stool test gives info on so much stuff ranging from pH levels, triglycerides, pancreatic function and all these are referred to as "digestive markers". Then you have the "metabolic markers" which are things like short chain fatty acids, butyrate, propionate and acetate (certain levels of SCFA's and butyrate can mean colorectal cancers). Then they test the "absorbtion markers" which are total long and short chain fatty acids, cholesterol and faecal fat. Then they also test for cacteria and parasites, yeast infections and lasty "nutritional support" eg: prebiotic, probiotics and anti-microbials. So i'd say it's a pretty decent test, a bit pricey, but for all that info it's worth it.

    I must agree with you. I too feel it's just the beginning and i'll join you in having MD after my name too

    Last edited by Audrey-B; 04-15-2008 at 02:34 AM.

     
    Old 04-15-2008, 02:50 AM   #13
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    Re: Update and FINALLY some answers

    Christine - I agree, mainstream gp's and even endo's don't tend to look wide enough and they don't like piecing together jigsaw puzzles. They simply look at a standard blood test and take it from there. In september 2007, my TSH was only at 2.70. I know it's supposed to be under 2, but no doctor would even bother to test further as my TSH wasn't high enough to worry about, regardless of my symptoms, but look at what has been revealed via further testing. A simply blood test for thyroid antibodies revealed the Hashimoto's and a new doctor and further non-mainstream testing fits together 99% of the remainder of the puzzle. I think all that is required now is some tweaking along the way of the thyroid meds so that i'm at the correct dosage.

    Littlebunnyfoo - i can totally understand where you are coming from in regards to frustration with doctors. I spent close to 7 years in that department. My stroke of luck came when i'd had enough of the hair loss and felt my last resort was finding a Trichologist. He helped me to no end and then referred me to the doctor i'm seeing for my thyroid. He knew the thyroid doctor wouldn't fob me off. I guess it helps when one good doctor knows another.

    You can't give up and if your doctor simply doesn't want to try alternatives or listen to you or take you seriously, you truly do need to shop around and find somebody who will. I know it isn't easy being a doctor as they have to be a "jack of all trades" within the medical field, but surely when a patient walks in and lists the types of symptoms most of us have they ought to test you for illnessess which have a common link/symptom (eg: hair loss). Why will one doctor take something seriously and run a heap of not so common tests, yet another wont even listen and simply wants to give you antidepressants?

    Like i mentioned in my opening post, my new doctor has people fly in from interstate just for a consultation. That is desperation, but i suppose they are getting results. It's sad when people have to resort to flying to another state to get the type of treatment which ought to be available from your local gp or specialist.

     
    Old 04-15-2008, 02:58 AM   #14
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    Re: Update and FINALLY some answers

    Audry, yes i read a up on it a little bit after you mentioned it. im thinking about ordering one online becasue i know if i go to my doctor theyll just want to do blood test, but its so expensive!

     
    Old 04-18-2008, 05:24 AM   #15
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    Re: Update and FINALLY some answers

    help wanted - i emailed my doctor regarding these tests as somebody else at my work is interested in doing it too. My doctor replied saying that naturopaths can order the test kit from the laboratory which performs the tests. I guess this will vary from country to country. Not sure about the places on the net which offer these services. Maybe if you ask around or phone a few doctor's surgeries. There is bound to be doctors who do these tests, especially if they have a whole lab to analyse the tests, then doctors from everywhere must be sending them in.

     
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