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FLFLOWERGIRL 06-13-2008 02:05 PM

Another Ferritin Update
Okay, I need a little encouragement now. I went for my 3 mo labs and had ferritin, b-12, folate, and CBC. My Endo also ran my TSH and T-4. Here are the results. My ferritin was 43 the highest it's ever been and I thought that it would be at least 50-60 now and it went down to 41. It was a different lab so I would really say that the numbers didn't change but remained the same. What a blow though, now I am wondering if it will ever go up anymore that was 3 more months of 150mgs iron daily and prenatal vitamins. I don't think that 1 daily is enough for me. My doc (PCP) said that he will no longer run ferritin checks on me and signed me off on the anemia and said come back in 3 months. My B-12 dropped from 901 to 801 also a different lab but close in values. Looks like a case of malabsorption (PPI'S) to me maybe the GI doc was right about that but he will not return my call regarding this DX. I did have a Dexa Scan done on Thursday to be sure nothing is happening there.

The one thing that I can rave about is my Hgb is now 14.4 and it was 14.1 so I'm looking pretty optimal there. My doc also said that the ferritin has nothing to do with the way that I am feeling. That really stinks!! I have symptoms that I have not been able to get help with from any doctors.

My TSh is now 4.50 and that doc said stay with the dose that I am on 0.75 4 days and 0.50 3 days. I went from normal function to 4.87 to 0.16 to 4.40 (Hashi's), and the high end of this so called ref. range is 4.50. But I go by 3.0and 4.40 is high to me. I can't change all my doctors, can I ????? I really don't know where to go from here I can't just take more iron without screening, but I think that is what I need to raise my ferritin. Any comments would be great!! FLFLOWERGIRL:)

irisheyes39 06-13-2008 02:50 PM

Re: Another Ferritin Update
Hi Girl,
Sorry your news wasn't so great. What about iron injections? No one could be more of a worrier than me and I took it with no problem, no staining nothing. Didn't even know I took it. How high do they want your Ferritin to be?

ChickieLou 06-13-2008 03:30 PM

Re: Another Ferritin Update
I can't imagine what I could tell you informationally, because YOU, my dear, know more than me AND my doctors combined! So I would trust that fact. I can't believe these doctors when they say low ferritin won't make you feel lousy. Like heck! I just took a walk up the hill behind my house and was squawking to my husband about how much energy I had. My circulating iron isn't that much higher, so I can ONLY believe it is the increased ferritin. No one here on this board would ever agree with that just from anecdotal evidence!

If it were me (and this is very similar to my herniated disk and when I was told that I am not a candidate for surgery - basically just "live with the fact that you can't sleep past 5 hours, at least you don't have non-stop pain like some of my patients") I would take a day to process it all, collect up my reports and get a second opinion on the doctor who you least agree with - and sure, maybe it's all of them! Maybe your doctors are good medically, but they are lousy listeners. I'm thinking of finding a new PCP because her English is so bad and I don't always feel she understands what I am saying. I know that doctors are an easy target of blame. But unfortunately, our medical system doesn't encourage creative thinking. You might even tell the new doctor(s) why you aren't thrilled with this diagnosis and one issue is that (I am assuming) they aren't collaborating with each other.

I know it sucks. And it's so draining when you already feel lousy. And you get tired of being ignored. It's why I have resorted to alternative care (on the stuff that I could) and by the way, my acupuncturist IS treating me for anemia. I don't tell everyone that because I know the response I will get. Don't ask me where she puts the needles for that. And no, I am not going to live with 5 hours of sleep. It's a moving target, but we will get there. (Darnit!)

I am also curious as to why they aren't considering infusions for you. To me this sounds like the first "go-to" answer if your current oral dose isn't working. Go-to! Not go home!

Hang in there. I think your thinking on what's going on is correct.

FLFLOWERGIRL 06-13-2008 07:44 PM

Re: Another Ferritin Update
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:)

irisheyes39 06-14-2008 08:29 AM

Re: Another Ferritin Update
My regular family doc gave me the IM iron right in the office. I wonder if the big specialist docs just want to do the "big guns" and not use the lesser means. I would think the IM shots would be the first line to go to after the pills. When they gave me the shot they measured somehow from my lower spine and then pinched the skin up alot and held it when they gave me the shot. I don't know if that was unusual or what should be done, but I didn't feel a thing and had no problems. They made me sit there for 20 minutes or so to make sure everything was alright. I think sometimes the specialists think they need to overdo things, like if you are going to them you must need the works. My family doc has about 15 years experience and the one before him had 45 years experience, so maybe that makes a difference. I always like to know how long my doc has been in practice, the younger ones seem to be not as good in my opinion.

ChickieLou 06-14-2008 09:22 AM

Re: Another Ferritin Update
I guess I haven't had enough coffee this morning. I can't correctly make a simple post. Oh well...

I was completely disgusted by the doctor dismissing all talk of ferritin levels. I think that's outrageous. I would go back to that other doctor who originally diagnosed MS because it shows he is willing to look beyond even what you are thinking without dismissing your ideas altogether. I guess that's why I keep my PCP in spite of her English skills. She's thrown out some quacky diagnoses too (like when she said my chronic back pain at night was fibromyalgia - please!) But when it's clearly not what it is, she persists. And actually I was the one who said I wanted an MRI and she said "why not?". Some doctors don't like patient participation. Those aren't good doctors, IMO.

So, now that you are recovering from being insultingly dismissed like that, and if you go back to that other doctor and he suggests IM or IV iron, are you game? I understand your reticence about it, but it's probably alot easier than a big tattoo on your butt. I worry about your stomach with all the iron you have had to take and the malabsorption which you don't want to make any worse. I am a big coward, so I would also want to double the oral iron only under a doctor's care.

Good luck and stay resolved.

FLFLOWERGIRL 06-14-2008 04:19 PM

Re: Another Ferritin Update
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:)

Audrey-B 06-15-2008 12:07 AM

Re: Another Ferritin Update
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 :)

mbbasketball 06-15-2008 06:47 PM

Re: Another Ferritin Update
Flflowergirl, I have not been on this board for a long time. Sorry to hear that things are not going well for you. Your TSH level is still too high. The new upper limit is 3.0. With Hashi, you really need a good Endo. You maybe under medicated at your current level. How often do you get tested for your TSH? Ferritin of 41 or 43 is still low and you can have symptoms especailly in combo with your tsh level. I know my PCP is not as alarmed with ferritin until it fall below 10. Then there is my hematologist who gets alarmed at a level below 50. I know thyroid diease and ferritin issuses go hand and hand. I think with having Hashi your levels can yo-yo so therefore regular testing is very important and follow ups should be by an Endo. If you can't change all your doctors, just add some new good ones.

FLFLOWERGIRL 06-16-2008 08:42 AM

Re: Another Ferritin Update
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:)

Audrey-B 06-16-2008 04:03 PM

Re: Another Ferritin Update
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.

irisheyes39 06-16-2008 07:38 PM

Re: Another Ferritin Update
Flowergirl, when you had your ablation did they check your endometrium? The reason I ask is because they are telling me mine is thickened, but I cannot figure out what that means. It is supposedly causing my bleeding and anemia and the scary part of course is the cancer possibility. Do you know what a premenopausal woman's estripe should be? Mine was 1.4cm immediately before my period. I am beggining to think the doc just wants a hysterectomy no matter what.

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