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I Don't Have a Diagnosis. Someone Help, Please! Freddd?

Discussion in 'General Symptoms' started by Mary Jane, Apr 16, 2012.

  1. nanonug

    nanonug Senior Member

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  2. nanonug

    nanonug Senior Member

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    Ideally, TSH should be between 1.0 and 2.0. It would also be important to have your Free T3 and Reverse T3 levels assessed. Reverse T3 inhibits Free T3 and if too high, will end up causing a functional thyroid deficiency.

    Your iron levels are low-normal. With a low TIBC that could mean borderline iron-deficiency anemia or anemia of chronic disease. In this latter case, your body is actively fighting an ongoing infection.
     
  3. Ema

    Ema Senior Member

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    With a TSH of 3, it is VERY likely that you still are hypothyroid. Most people feel best with it between 1-2. Further,TSH is a dreadful measure of cellular response to thyroid hormone. It is measuring a hormone produced by the pituitary. Unfortunately some of the thyroid specialists are the worst at diagnosing sub clinical hypothyroidism and rely only on the almighty TSH. It is crucial to look at the free T3 and free T4 as well as RT3. I hope you will take some time to do some research on this issue as I think it could be a major piece of the puzzle.

    www.nahypothyroidism.org

    TIBC is a measure of iron binding ability. It is crucial because when free iron is dangerous in the body and can also feed pathogens and viruses. So you are in a particular pickle that is fairly common in chronic illness...you desperately need iron with your serum iron about half of where it should be for proper thyroid hormone transport but you have no capacity according to your low TIBC to safely take iron. The body is trying to starve pathogens of the favorite food but you are being starved of iron as well. One of the best ways to raise a low TIBC to tolerate iron is...treating hypothyroidism. Lactoferrin along with a low dose iron supplement may help at first as well.

    These iron results also indicate that a bacterial and/or viral confection is pretty likely in my opinion.
     
  4. Googsta

    Googsta Doing Well

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    I am confused, maybe I missed something.....how dId you get this diagnosis if your EEG's were all negative?
    Who provided the diagnosis in both these cases?
    Thanks ;)
     
  5. Mary Jane

    Mary Jane

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    Tania,

    Thanks!
     
  6. Mary Jane

    Mary Jane

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    Ema,

    Thanks for the information. :eek: I would have never guessed that a freakin' doctor who specializes in it wouldn't know. **sigh** I found my paperwork. My TSH is 3.3 and he said on it, "Good! It's normal!" And my free T4 is 1.1. He did not look at the free T3. I did begin research on this and then kept looking at another cause then another, until I didn't know where to look. Thanks. I'll go back and get tested for these and find another endocrinologist--or someone.

    So, you think this could be hypothyroidism and an infection? I already have a lumbar punture scheduled to rule out (or in) an infection.

    Thanks for all the insight!
     
  7. Mary Jane

    Mary Jane

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    Nanonug,

    I'm taking your and Ema's advice on the thyroid issue. And I already have an LB scheduled to look at infection. Thanks so much for the valuable information! Hopefully I'll have some good news to share!
     
  8. Mary Jane

    Mary Jane

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    Googsta,

    I'm confused as well...lol. I stayed in the hospital under observation and was hooked up to an EEG all week. I was slowly taken off medication and during that time, I had a partial seizure, and they came to the conclusion--it was epilepsy, even though I didn't agree. My neurologist and the head neurologist at the hospital came to this conclusion. :headache:
     
  9. rlc

    rlc Senior Member

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    Hi Mary jane, glad to hear at least your primary doctor is getting the link between your symptoms and Folic acid and B6, it is possible that it was a coincidence that your symptoms started at the same time as taking the supplements, but highly unlikely!! Although Epilepsy can be made worse with folic acid it does not explain all your other symptoms!

    Glad you dont have diabetes thats one of the list.

    Ema is right, a large number of endocrinologists are rubbish at diagnosing thyroid disorders, and they rely on using TSH, but use a reference range for it that is completely wrong that says above 5 means people have thyroid problems, modern research says that levels above 2.5 mean that people have thyroid problems. This modern research is explained in this article http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

    Because most endos are using the wrong reference range they also use the wrong amount of medication and believe that getting TSH just below 5 means the patient should be cured and are then baffled when the patient still has symptoms.

    You say that your TSH is now 3.3 this is still too high and is not being treated properly, In his article Unveiling the mysteries of the thyroid found on this page http://www.bmj.com/content/337/bmj.a801?tab=responses Dr Shirwan a Mirza (a up to date Endocrinologist) explains how to properly treat these kinds of thyroid issues, he says

    In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
    by 2 digits. This simple math will allow you to have a rough estimate of
    levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

    If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do
    not waste your time on thyroid and look for other reasons for the
    patient's symptoms.

    Maybe your doctor could use Dr Mirzas treatment equation to get your TSH down to between 1-1.5 and see if this relieves your symptoms.

    If you havent already had these done a thyroid antibodies test and urine iodine test may show some use full information.

    Because your TSH results are high, not extremely low this rules out Graves disease which is another one of the list of conditions that react badly to Folic acid.

    It is possible that the folic acid aggravated the thyroid problem and caused the seizures? as thyroid conditions can cause seizures.

    There is however another condition that would explain your symptoms including seizures and your high TSH and reacts badly to folic acid, that endos are also generally rubbish at diagnosing, this is Addisons disease (adrenal insufficiency), This should be tested for soon, rather than just treating the thyroid just in case! Endos tend to rely on a morning cortisol tests to diagnose this, however a large number of people who have it, have cortisol in the normal range, information about it and how it should be properly diagnosed can be found here http://elaine-moore.suite101.com/adrenalinsufficiency-a1543 Although an ACTH stimulation test is needed to diagnose it and these are normally only done by an endo, if your doctor is helpful, they can order the Cortisol, ACTH blood test and aldosterone tests that will show if the ACTH stimulation test is needed, but be aware that Hypothyroidism can lower cortisol results. Treating high TSH if Addisons is the cause will achieve nothing it is a symptom not a cause.

    Regarding your vitamin D level, is the 35 level that you have achieved in nmol/L or ng/ml, different countries use different units of measurement if it is in nmol/L then your level is still very low, your doctor should be giving you large doses of it to get your levels up as quickly as possible so that you are free of any symptoms of it, this symptoms will also be clouding the diagnostic picture and make it harder to work out what is going on. I have put a lot of information about vitamin d in post #56 here if you want to take a look http://forums.phoenixrising.me/show...-treat-national-health-shame-and-CFS-ME/page6

    However Hypoparathyroidism must be ruled out first! By testing PTH and Calcium, blood phosphorus and magnesium should also be done. Information on it and how to diagnose it can be found here http://www.mayoclinic.com/health/hypoparathyroidism/DS00952/DSECTION=tests-and-diagnosis

    Hyopituitarism can react badly to folic acid, testing for this involves testing for all the hormones that the pituitary produces, which include things like ACTH which needs to be tested to rule out Addisons ,the tests for this are explained here http://bestpractice.bmj.com/best-practice/monograph/521/diagnosis/step-by-step.html your doctor should be able to order these blood tests if they havent already been done.

    The other illness that reacts badly to folic acid and can cause seizures is Myasthenia gravis, information on and testing for this can be found here http://emedicine.medscape.com/article/1171206-workup

    Regarding your iron levels, do you have results for Ferritin and Transferrin Saturation as well? If you have results for these tests it would help get a clearer picture of what is going on. Your blood serum level is within the normal range, if people have iron deficiency anaemia TIBC rises, yours is a bit low, so youre not iron deficient, there is a good graph here that explains what the test results may mean http://labtestsonline.org/understanding/analytes/tibc/tab/test its hard to tell without the other tests what is going on so if you do have more results post them and I will see if I can make any sense of it, theres an interesting article here about iron and the thyroid, http://www.stopthethyroidmadness.com/ferritin/

    As I see it the most likely cause of your problems is a condition that has similar symptoms to yours reacts badly to folic acid and can cause seizures.

    These are diabetes, which has been ruled out
    Graves disease, ruled out
    Addisons, dosent sound like this has been investigated so is possible espicaially with high TSH
    Hypoparathyroidism has not been ruled out
    Hypopituitarism, not ruled out and possible because of high TSH
    Myasthenia gravis not ruled out
    Thyroiditis, positive for high TSH, but other causes of high TSH like Addisons and Hypopituitarism have not been ruled out, if it is thyroditis, it is not been treated properly as TSH is still too high!

    Good medicine is supposed to be done based on creating a list of diseases (known as a differential diagnosis) based on the patients symptoms, family history, test results and reactions to other substances taken, e.g in your case folic acid, this could be a vital clue to getting you a proper diagnosis.

    This does not appear to be what has happened in your case, the doctors seem to have not done a complete differential diagnosis and except for one doctor have ignored your reaction to folic acid. Instead they have jumped to the most obvious conclusions that your seizures are caused by epilepsy despite normal EEGs and that your high TSH means you have hypothyroidism, without ruling out other possible causes of high TSH, and then have given you treatment for it which has not been enough to reduce your TSH to between 1-1.5, so we are left none the wiser if thyroditis is the cause of your problems because it hasn't been treated properly.

    If your doctor will test for the above diseases that have similar symptoms to what you describe and react badly to folic acid, which should be done if proper medical practice is to be followed, chances are that they will find the correct diagnosis, but at the moment you do not appear to have had a proper investigation of all the possibilities. If it is none of the other diseases on this list, it is quite possible that what you are suffering from is badly treated Hypothyroidism because they have not got your TSH levels to between 1-1.5 and vitamin D deficiency, both of these things are easily fixed by someone who knows what they are doing, you may also have some kind of problem related to your iron levels but I cant really tell without knowing the other test results.

    Hope this helps and your doctor will investigate these possibilities for you, if they wont get another doctor.

    All the best
     
  10. Ema

    Ema Senior Member

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    Most people feel best with a FT4 around 1.4. So in my opinion, this is low and combined with the TSH, I would be looking very hard at thyroid replacement with either a natural thyroid product (Armour is the best known but since reformulation many people now prefer Naturethroid or Acella brands) or possibly T3 only depending on your other labs. I would definitely test FT4/FT3/RT3 as soon as possible.

    You may also wish to take a look at the STTM website - http://www.stopthethyroidmadness.com/ or Tired Thyroid - http://tiredthyroid.com/.

    I would also do a saliva cortisol test ASAP. One can be ordered for just over $100 through ZRT/Canary Club without a doctor's order in most states (if you are in the US?).

    I would do the methylation panel and a full battery of tests for the most common viral (EBV, CMV, HHV-6 etc) and/or bacterial (Lyme, CPn) infections. That way you can get a handle on what is going on and then choose the most appropriate treatments (antibiotics, antivirals, methylation, hormones, etc) for your specific issues.
     
  11. Mary Jane

    Mary Jane

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    Rlc,

    Wow. Thank you so much for taking the time to give me all this information. You don't know what it means to me.

    As for the Ferritin Serum, the level is 192; refernce range is 13-150. Iron Saturation (there's nothing on the report that says exactly what you listed) is 22 and the range is 15-55.

    And the really sad part of this is I diagnosed myself with thyroiditis. I knew it was my friggin' thyroid, so my primary agreed and sent me to the "specialists" who said since the level went down and I'm fine. And they were wrong! :oops:

    Then I thought about the Hashimoto's Encephalopathy. I need to find a good doc to help me--a good specialist that is.

    I'm getting an LB to rule out infection, but Thyroid is what I'm feeling. A close family member had thyroid cancer.

    Rlc, I'm definitely getting every test known to man. I've already met my deductible for the year, so I don't pay for anything else this year! Yahooooo!!!

    I'll let you guys know what happens. I feel good about the information!
     
  12. Mary Jane

    Mary Jane

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    Thanks Ema. I've written these tests down, printed everything, etc. And I will definitely get on it. I'll let you guys know what happens.
     
  13. Mary Jane

    Mary Jane

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    Thanks to everyone who has replied on this thread and to the people who e-mailed me as well. You all have no idea what this means to me. The caring support and the information is more than I've received from these doctors for almost 2 years. I will definitely let you all know what happens and I'm sure it will be good news!:hug:
     
    ahimsa likes this.
  14. nanonug

    nanonug Senior Member

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    Given all the info you provided, it looks to me like anemia of chronic disease. Ferritin also rises as a marker of inflammation or infection.

    If your levels of C-reactive protein are also elevated, that completes the picture of some kind of chronic disease.
     
  15. rlc

    rlc Senior Member

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    Hi Mary Jane, glad to hear you can get all the tests you want, make the most of it, your thyroid looks to be malfunctioning and not being treated properly, to test for Hashimotos you need to get a test for thyroid peroxidise antibodies (TPOab) see http://www.mayoclinic.com/health/hashimotos-disease/DS00567/DSECTION=tests-and-diagnosis
    You can also get Thyroglobulin antibody (TgAb) tested see http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test these tests will show if it is an auto immune thyroid condition.

    You may have some difficulty in finding a good specialist, but if your doctor will treat your thyroid along the lines that Dr Mirza outlines in his article you probably wont need a specialist, but make sure that other conditions like Addisons are ruled out first.

    Iron saturation is another name for transferrin saturation; youre within the normal range for that. However your ferritin is a bit high which can mean lots of things, in combination with low TIBC it narrows it down a bit, it may just be anaemia of chronic disease but there are other possibilities which are listed here http://en.diagnosispro.com/differen...g-capacity-decreased/11876_10124-154_153.html
    I would imagine that you have had most of the anaemias listed here ruled out, but get your doctor to double check this list to make sure everything has been. Another possibility on this list is hemochromatosis (genetic iron overload) which can damage the thyroid if iron accumulates there. Hemochromatosis is unfortunately another one of those common diseases that most doctors know very little about. There are genetic tests for it that can be done, but they dont test for all the genes that can cause it so some people can get missed, but maybe you could get these done.

    Ferritin is used as a measure of total body iron stores and the reading you have says that you are above normal levels which raises the possibility of Hemochromatosis, however ferritin also rises when there are things like inflammation and infection in the body, if this is what is happening with you, then ferritin becomes a useless marker of body iron levels, and you true iron levels could be a lot lower.

    I would say that the most likely cause of your iron results is anaemia of chronic disease, but make sure all the other things have been ruled out, unfortunately iron results like yours can be very none specific and may just be a result of your thyroid condition, but they can also be found in some very serious illnesses. If all the other tests and treatment dont give you a diagnosis and cure, then it may in the future be worth having a deeper look into hemochromatosis. There is a large amount of disagreement on how to diagnose this condition and most doctors are very out of date. But if all the other investigations dont find the cause of your illness the most accurate site on hemochromatosis is http://www.ironoverload.org/

    Hope you get a complete diagnosis soon and up to date doctors who can treat it properly soon!

    All the best
     
  16. hixxy

    hixxy Woof woof

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    It's quite amazing the amount of knowledge floating around these forums. How is it a lot of doctors (not all) aren't able to take this kind of care with us?

    hixxy
     
  17. Ema

    Ema Senior Member

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    Krill oil is often effective for reducing higher ferritin due to inflammation. Many people take up to 2000 mg/day.
     
  18. Mary Jane

    Mary Jane

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    I am saving all this information and my doctor is reviewing it as we speak--after hours--on personal time. I plan to come back sometime in the future with some great news! Thanks guys!
     

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