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Thread: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

  
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    NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    HI dear guys. You have so many smiley faces her, wow I am new on this forum. My name is Maria, i will be short and introduce myself where I am supposed to. Please forgive me in advance if I act a little bit scared here. The thing is that I am going through real, real hell with my very atypical hypothyroid case, at this point i am in severe myxedema, and I have been completely resistant to all thyroid therapy ever since i became ill. I used to be an active attractive young woman two years ago, and since then I haven't felt like a human anymore. I look like a picture from a medical dictionary, with severe myxedema of the face (skin thickening, jowls), almost complete hair loss, stomach ascites, overall swelling, mental changes, deformed hands, its not a joke, I do. I walk with a cane, I just had a scary heart related incident this night and spent a night in the emergency room, my mind slowly deteriorated over the course of past few months to end up today with delusions, speech impairment, confusion and memory loss. It took less then a year to descend into this condition, and i was sick for two. My blood tests always looked only slightly hypothyroid. Even now, in my state, every doctor that looks at me immediately identifies hypothyroidism, but once they look at my perfect TSH, they refuse me treatment. I only had 1 doctor who believed that i have a severe case here, and she also agreed that I am completely resistant to drugs. I am hardly able to function now. I am sorry if I sound not much fun when there are so many intricate smiley faces available . This is probably the last time I try to connect to humans )) in search of help. I am pretty much over the edge here, but sweet sweet Dawn invited me here to post my labs and see what we can do. When i say "every therapy", it literally means "every" . Fixing adrenals, other hormone correction, B12, Ferritin, celiac disease tests, I 've worked with everything and done everything. T4, T3, Armour, Cytomel, slow release T3, slow raising, fast raising, doses from 5 to a 1000, for 2 years. Two years of pure hell. The first year I walked in pain with water retention of up to 30-40 pounds on my face and body every day. Pills were like taking a placebo. My blood work is here, I can post more later on. This is most recent. I don't even have a doctor anymore who is taking good care of me, and who will admit that I have a very rare case of total thyroid resistance. Perfect TSH is a curse.

    First test i ever had taken for thyroid disorder in November 2006:

    TSH—7.55 (0.4—5.5)
    T4—2.5 (0.65—1.80)
    T3—2.4 (2.30–4.20)

    More recent (ranges the same, same lab):

    June 2007 29, 207, 08:30 AMT3 therapy, some HC added)

    TSH—0.01 (0.37—4.42)
    T4—1.17 (0.65—1.80)
    T3—5.90 (2.30-4.21)

    June 29, 2007 , 12:11 AM. (T3 therapy only, but more HC added and more T3 added, see how HC drives T4 down):
    TSH—<0.01 (0.37—4.42)
    T4—0.59 (0.65—1.80)
    T3 —9.29 (2.30-4.21)

    January 16 2009 (no meds)
    TSH—2.37 (0.37—4.42)
    T4—0.72 (0.65—1.80)
    T3 —2.18 (2.30-4.21)
    CRP, High Sensitivity ((<10)) mg/L——10.1 H (I have no idea what this is)

    Sodium (136—145)—140
    Potassium (3.5-5.1)—4.2
    Creatinine (0.50-1.10)—0.59
    Chloride(98-109)—106
    Albumin(3.4-4.8)—4.5
    Protein(6.4-8.3)—8.0
    Alk Phosph (42-98)—139H
    CAlcium(8.6-10.5)—9.7
    BUN(6-20)—13
    Glucose(70-139)—87




    January 27, 2009 (no meds)
    TSH—2.24 (0.37—4.42)
    T4—1.07 (0.65—1.80)
    T3 —2.90 (2.30-4.21)
    CRP, High Sensitivity ((<10)) mg/L——2.5

    Sodium (136—145)—142
    Potassium (3.5-5.1)—4.8
    Creatinine (0.50-1.10)—0.59
    Chloride(98-109)—104
    Albumin(3.4-4.8)—4.9H
    Protein(6.4-8.3)—8.3
    Alk Phosph (42-98)—150H
    CAlcium(8.6-10.5)—10.1
    Glucose(70-139)—92
    BUN(6-20)—12

    I have A LOT of old labs but they were all HC-related. I haven't taken HC for over a year now.I also can post the tests for other hormones that i haven';t picked up form a lab yet, maybe tomorrow.

    Thank you very much!!!

    Maria.

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    I dont understand, why any medicine doesnnt work on you? Is it because you had server exposure to nuclear radioactive material or is it something else? If medicine is not working for you, then why your test results are changing.

    I honestly think it could be a lot more than just thyroid itself though it's contribution towards all problem may be a lot. Your latest blood tests look very good but then again who cares about the perfect blood tests if you aint feeling well. You have been off HC for more than a year but did you even do it's tests at all? What was your HC routine and did you feel any better? Did you have exactly the same symptoms as now?

    Who was your Endo till now? There must be someone who you were consulting. I am still a bit confused where are you permanent resident? Is it in the UK or in the USA?

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    Many questions!
    I will go in reverse: I live in the US now.
    My endo: Over 2.5 years I have seen about 8 of them. Some traditional, some "alternative". I have a list of names, but you guys have different doctors there, anyway. I only had one of them who actually was a good doctor and understood what she was doing. I have been on a lot of thyroid therapies since i got diagnosed, but despite my "levels" looking fine, I only got worse and worse. I can post pictures as of today and you will be shocked. If you google "myxedema" and get a bunch of pictures from old medical encyclopedias of those elderly chaps with severely swollen faces, thick skin, no hair and bloated tummies, that is me. I am just like them now.

    HC issues: Before I was even placed on HC, i did a saliva Cortisol 4 times a day test. I came up low. I was raising HC and raising Armour (or T3, after Armour failed) exactly by STTM protocol (and by my doctors' protocol, of course). I have tried different doses over the course of a year, and because I was resistant to thyroid meds, HC only made me feel much much worse.(if your thyroid is not supplemented, HC lowers your natural T3 levels. So if you can't take meds, you just lower your T3 with HC, that's all you are doing). HC basically did nothing besides fixing my adrenals, but i still couldn't take Armour or anything else thyroid-wise. I was just that-resistant.

    Why I am resistant? There is not a day when i don't ask myself this question. I have no idea. I can only assume that its because of radiation. Maybe genetic. But there is no way to find out.

    Blood levels only show blood levels. My tissues are resistant to thyroid hormones, but they circulate in blood perfectly well. Its the only explanation I have up to date...
    I agree on account of "something else is going on." I always had a suspicion that something else must be wrong, but everything checks out as fine. I even had an MRI in 2007 and besides a little pit. microadenoma which most of us have there was nothing wrong with me. I had my adrenals CAT-scanned, had my brain scanned, had my estrogen issues fixed...nothing.I wish I only knew. Life as of now ifs absolutely unbearable. I will post the pictures, but i am kind of embarassed to do so. I will.

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    Hi hon

    Well the labs still are outside what a person would want to see for optimum thyroid treatment. The high sensitivity CRP is an inflammatory marker and indicator of possible heart related problems but that seems ok.
    As Sid says, it is so strange that the labs change up and down with your meds even though you are not feeling the benefit, so it could be cellular (mito)problems related to lack of another hormone needed to utilise the TH, enzymes as you have alread observed in resistance, the cells themselves can develop the wrong kind of membranes, however you are probably not far off when you say you are possibly resistant due to enzyme problems when you emailed me. I know it is so frustrating not know why, we all need to know WHY

    I am not good with any other kinds of lab tests except for what I have come accross on my own like wbc and plasma viscosity and stuff.

    If your hypothalamus or pit have a problem that would explain why your TSH wasn't even higher at the first diagnosis when your T4 and T3 was so low.

    Anyway we can only wait for the next lot hon, and the result of your MRI. to God that something crops up to help you with a treatment.

    I know it is difficult with insurances in the US and treatments, we aren't getting much here in the UK either. Your background is probably not easy to relate to for the Drs in the US either, I mean, who has had the kind of experience required for this?

    You seem to have been posting while I was posting lol..

    Get well dear lady
    lotsa luv
    Dawnx
    ''If you don't know where you are going, any road will get you there.'' The Cheshire Cat, Alice in Wonderland

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    I know,
    As Sid says, it is so strange that the labs change up and down with your meds even though you are not feeling the benefit,
    even when i take T4 only it perfectly converts into T3 and my Reverse T3 is always perfect. Everything is perfect, isn't it.

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    Quote Originally Posted by baby grace blue
    I know,
    As Sid says, it is so strange that the labs change up and down with your meds even though you are not feeling the benefit,
    even when i take T4 only it perfectly converts into T3 and my Reverse T3 is always perfect. Everything is perfect, isn't it.
    Well we know about how effective blood tests are on diagnosis of clinical symptoms don't we?
    Useless, absolutely useless for too high a percentage of people.
    I had what the Dr said were 'wonderful' test results last time, I was in a state of chronic ill health still, so the 'thryoid control' they strive for doesn't always cut it does it?

    NO not perfect at all hon.
    luv Dawnx
    ''If you don't know where you are going, any road will get you there.'' The Cheshire Cat, Alice in Wonderland

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    Re: NEW HERE:-) Blood vs. Tissue Levels? Thyroid Lab Results

    Quote Originally Posted by baby grace blue
    I can post pictures as of today and you will be shocked. If you google "myxedema" and get a bunch of pictures from old medical encyclopedias of those elderly chaps with severely swollen faces, thick skin, no hair and bloated tummies, that is me. I am just like them now.
    Don't get disappointed. In illness, everyone looks odd, it's not under our control so let's hope it's get better.

    Quote Originally Posted by baby grace blue
    Why I am resistant? There is not a day when i don't ask myself this question. I have no idea. I can only assume that its because of radiation. Maybe genetic. But there is no way to find out.

    Blood levels only show blood levels. My tissues are resistant to thyroid hormones, but they circulate in blood perfectly well. Its the only explanation I have up to date...
    I agree on account of "something else is going on." I always had a suspicion that something else must be wrong, but everything checks out as fine. I even had an MRI in 2007 and besides a little pit. microadenoma which most of us have there was nothing wrong with me. I had my adrenals CAT-scanned, had my brain scanned, had my estrogen issues fixed...nothing.I wish I only knew. Life as of now ifs absolutely unbearable. I will post the pictures, but i am kind of embarassed to do so. I will.
    Yeah you are right....even if blood has got everything in it, it there isnt thyroid uptake, it wont be any good to you. I dont think it's genetic either as it has just come in very little time so it must be something which has gone terribly wrong in that time period. Also if there was an issue with Pituitary, your TSH levels wouldnt fluctuate....may be it's partially dead. I dont know if there are any tests to check and see if Pituitary is alright as it's the master of everything.

    Quote Originally Posted by whitbywitchuk
    If your hypothalamus or pit have a problem that would explain why your TSH wasn't even higher at the first diagnosis when your T4 and T3 was so low.
    Yes Dawn but couldnt that be due to other reasons as well like change in medication etc. In other test results, TSH varies, okay slightly but it doesn

    Quote Originally Posted by baby grace blue
    I had what the Dr said were 'wonderful' test results last time, I was in a state of chronic ill health still, so the 'thyroid control' they strive for doesn't always cut it does it?
    Oh I wouldnt trust what doctors say....them poor guys dont know anything themselves but I dont blame them either. Unless you have gone through it, you probably wont understand how it all feels. Dr. Peatfield is perhaps very good in thyroid/adrenal issues because he himself suffers from this. He told me on my last visit that he takes 4 Grains of Armour everyday

 

 

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