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Irisheyes39 and ChickieLou thanks so very much for your needed response. It's different coming from supporters on this board. I really think that we are the only ones that really understand what this does to us. Until you have been there, you just don't know. I think that is the problem with some of the doctors that they need to experience this first hand and they may feel differently about being ~in range~.

Irisheyes39--I was told to get IM iron by my GI ( he said that I can't take oral, but I do) and, my Hematologist said no to that he only does the "big guns" meaning IV iron. I wouldn't be afraid of the IM I don't think although that is not without risk as well. I also wouldn't care if I had the largest tattoo on my bum either, I just want a reasonable ferritin level for when my body requires more reserve it will be there. My Hematologist said he wants my ferritin over 10 and under 1000 and discharged me on 1 iron daily. Great answer right? I asked the GI and his MA said 50 and my Endo said 40-50 but he was no expert, his words. Now my PCP said not to say the word ferritin again and that he will no longer run the test. This is why I am so frustrated besides the fact that my ferritin hasn't changed in 3 months and I take supplements daily.

ChickieLou--You can tell me anything right now and I greatly appreciate you taking the time to do so. It's one of those days. I like your response and I was already thinking along those line of taking a 3 day cooling off period and then making an appointment with the internist that thought that I had MS. He was one that tested me for lots of things and is very knowledgeable. I went back to my old PCP and knew in my gut that it was not right so I am responsible for that. I have to keep on keeping on because I know my body and there is more going on than anemia because that's over and the ferritin is also an issue along with taking the right amount of iron to build my stores. I think that I need to resume the 2 daily but want to do it under a doctors care. I don't like taking on that role. I find that my doctors do listen but they don't know what it is that I have so they say nothing or that it's anxiety or will not do further testing if it is not their idea.

My Hematologist was going to do IV therapy in the beginning when I had a 2 ferritin but he said that I do indeed absorb iron so take supplements, it has now been a year and a half of taking iron and a 41 ferritin. I need one good internist that can cover all bases. But I tried that before too and it didn't work so I just don't know............Thanks so much for your experience. FLFLOWERGIRL:)
ChickieLou--This is not the first doctor that has dismissed talk of ferritin it's about 2-3 now. At this point there is no way that I would go for IV or IM, I might think about IM. IV is usually reserved for cases that are much more complicated than mine. From what I hear about the IM injections it doesn't sound like they raise the numbers much at all. I know that I would NOT do well with IV, especially with the other symptoms that I have going on. I do absorb iron supplements LOL, I just need a higher dose. It is my thinking that the Hematologist should have kept me on higher dose iron until the ferritin was at a higher level but he was not concerned at all about the ferritin number as long as it was in range. The iron that I am on is meant for long term use and is easy on the GI tract, I do really well with it and don't mind taking it. Thanks for the good wishes. Glad that you are feeling better too with a great looking ferritin!! FLFLOWERGIRL:)
FLFLOWERGIRL - Sorry to hear your figures didn't go up and much sorrier to hear you have to deal with such inconsiderate doctors.

Do you think you needed a much higher dosage of iron all along? or could it be malabsorbtion due to some other reason?

As you and i both have Hashi's, my previous doc who treated my low iron said that low iron seems to be quite common in our case and he sees a lot of females who have Hashi's, iron issues, digestion issues, hormone imabalance, hair loss.

You can also look on the bright side and view it as your iron taking a 'sabatical' :) I know after i had those 5 iron injections, then went back on the iron supplements it was still slow going. I never thought i'd get there. I can't believe it took 2 years to get to 61, then i ease off the iron and by next blood test i was down at 59. Just goes to show you can't slacken off.

I'm not on the iron powder i used to take. My new doc said i could take one called Ferro-f-tab. It has 100mg elemental iron (310mg ferrous fumarate) and contains folic acid 350ug, but not vitamin C, so i eat an orange with it. I have a new blood test in a couple of weeks, so it will be interesting to see how this tablet compares to the powder i used to take. The good thing about that powder was that it contain a million and one other things which were of benefit. The only draw back was that i had to mix it with water and it would be lumpy....... simply too much effort and after taking it for a year i was sort of over it and would prefer to be taking one pill. The Ferro-f-tab is great as it has not even constipated me and i've been on it for over a month now.

I don't even know what to suggest in your case. You know i did one of those stool analysis tests to check my digestion, i suppose your doctor would get cardiac arrest if you requested something like that??? :D I only ask as this test was of such benefit to me. Would never have known why i wasn't absorbing my protein. It could be connected to my Hashi's, but i tend to believe the big deal here is my digestion. Makes me wonder how many other people out there have digestion issues and don't know it and thereby can't absorb iron and other things.

You take care of yourself and don't let those doctors get your down :)
Audrey-B--Okay, it took you 2 years to reach 61-59, so we are about the same I would say. In the end we may find out that it is the same reason as well.

I was on 2 iron daily for a year and my Hgb finally reached optimal levels. This is when they cut the iron to 1 and I still needed 2, I know that now but it has been since January that I have been taking 1.

I have read something that I wanted to tell you about. It is a Matrix of Symptoms of Adrenal Fatigue and it explains malabsorption, very interesting, Adrenal Verses Hypo-T. When I got to the Malab., I thought of you and me and others..........

Short story: My friend has many of the same symptoms, along with B-12 def. She kept telling the doc that it was her thyroid and they all felt the gland and checked labs and said she was, guess???--"in normal range" LOL. I told her that there was such a thing called Euthyroid and she needs an Endo to work with her on perhaps a trial dose of Synthroid, fat chance but worth a try. She went to this new doc and he said that she had a goiter that is why it doesn't show up on the labs. She had an US done and has a nodule on each side of her thyroid but normal TSH numbers. Thank goodness that she saw this new doc. She has been told for years that everything is fine. Just an example of not giving up.

Funny you should mention the stool malab. test because when I was at the Endo he said I should have this done, not my suggestion at all and he also said Celiac testing which my GI didn't/wouldn't do at the time. I called my GI and relayed the info (docs in the same group) and they never, never called back. I am really tired of being treated like this. This is why I want to eventually see the internist that I went to before, he may be able to accommodate me. I also told my PCP the other day what the Endo said and he pretended I didn't say anything at all. Imagine that? Be well!

mbbasketball--I agree with the TSH being too high. And I am Yo-Yo-ing as Hashi's people do. This is mostly do to the incorrect amount of meds I believe. Now I think that he is afraid to give me more because I went 0.16 last time he raised it. This is surely ~minimal treatment~. I do see an Endo and have labs with him every 3 months and F/U with Endo every 6 in person. He makes adjustments in between over the phone.

I am always interested to hear what other doctors tell their patients about where your ferritin should be. Or, if you can possibly have symptoms due to a low ferritin. Your in- put on ferritin levels is what I hear also. I really appreciate you sharing your experience with your doctors and opinions given. It is so nice to have people like you and everyone else on this board for ~my own reassurance~ that I'm not going crazy! Thanks so much for that. Hope you are doing well. FLFLOWERGIRL:)
mbbasketball - i totally agree with adding a new good doctor/s even if you can't get rid of the bad old ones. That is what saved me in the end, never giving up on finding at least one good doctor. It took a while, but i found him and he then found my next good doctor. Usually one good doctor will know another good doctor. My current doctor has patients fly in from interstate simply for a consult on their thyroid and then they fly back home. Makes you realise how many bad doctors are out there and what lengths people are willing to go to for their health.

FLFLOWERGIRL - adrenal fatigue is another big one. I thought i was alone with this until i visited the thyroid board and a heap of other people over there have it too. From reading, some people's doctors never tested for it until much further down the track. My doctor tested for it prior to medicating me with any thyroid meds. Actually he tested the adrenals, hormones and digestive area prior to issuing any medication.

He recently got me to do a liver test to see how it's detoxing. My phase 2 liver detox isn't where he'd like it. From what i know, the phase 1 area filters everything from the shampoo and cosmetics you use to food, pollution etc. The phase 2 area then sends things off to the bloodstream, kidneys, bowels or where ever else. It sort of wraps it up and moves it on and this is the area i'm having issues with. He has put me on a Glycine powder after meals and he also mentioned that milk thistle is another good one to take for the liver.

I never understood what the liver had to do with all the other issues i have, but then i read something somewhere on what's connected to what and what does what, what goes where and it appears within what goes on with the thyroid and what has to be correct for the thyroid to work successfully the liver comes into it somewhere along the line. It's all too confusing, but it made sense when i read it :D

Do they check your iodine levels too? Mine is always checked via urine, never a blood test. I also did a 24 hr iodine retention test to see how much iodine i'm left with in my system. I steadily lose it and this is being blamed on the thyroid too.

I'm now taking one drop of iodine each day and he has also added selenium to the mix, of which i take 3 drops. He said evaluating selenium levels via a blood test is not very effective as it tends to show you as having more than you actually do have. Taking selenium tends to help people lower their thyroid antibodies too.

I asked my doctor why everybody appears to be on a T4 type medication and i'm on a particular T3 type called Triiodothyronine. Not sure now if he meant ALL T4 med's or just thyroxine, but did say that it releases totally within one hour, whereas the one i'm on releases slowly over a longer period and he feels is more beneficial. He said it works most similar to how the thyroid would work. I take mine morning and night and it is not affected by taking iron tablets with it, whereas T4 type med's can't be taken in conjunction with iron. He did go on to say that much later down the track he will introduce a tiny bit of Thyroxine to what i'm taking at present, just to fine tune things.

It is funny how different doctors do things differently. Some of the things i've read on what doctors have told people is extremely scary. One girl had high antibodies and her TSH was all over the place, but as it had not reached 4, her doctor would not medicate her. As soon as my doctor saw my antibodies he didn't give a damn about my TSH, he knew automatically what i had.

I was reading one of those books lists on new books which are out and the little snippets of information they give you on the book's content. There is a book called "Why am i so Tired? Is your Thyroid making you ill?" by Martin Budd. He says "The thyroid is your metabolic clock and when the gland is inefficient, your metabolism does not usually recover from sleep until midday". Maybe this explains why my metabolism came up in my test as being slow as my doctor said the test MUST be perform early in the morning and no later than 10am.

I think you are quite clued in on what's going on with you and all you need now is a doctor who is as clued in and willing to see you get better.





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