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  • Swollen/Fat tongue with hypo ???????

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    Old 11-02-2008, 09:04 AM   #1
    caseymay
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    Question Swollen/Fat tongue with hypo ???????

    As some of you may know, I am currently been tested for hypo. My tsh, t4 and t3 appear within range, and i see endo tomorrow to discuss the results and to get anitbodies results. Along with other suspect symptoms, over the last few days my tongue has sort of swollen - not painful, but just fatter and it feels too big for my mouth. The edges are bumpy where they are against my teeth.

    I heard this could also be a symptom. Should I mention it to endo????? Have any of you had this??????

     
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    Old 11-02-2008, 10:52 AM   #2
    TDCRose
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    Re: Swollen/Fat tongue with hypo ???????

    When my thyroid swells so does my tongue. I have had a swollen tongue on and off for the last five years. I figured it is just the my body attacking itself.

     
    Old 11-02-2008, 11:41 AM   #3
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    Re: Swollen/Fat tongue with hypo ???????

    It's definitely a sign of hypo, usually due to the deposition of a substance known as mucopolysaccharide in the tissue. But there's no guarantee that an endo will agree, because they can be pretty mule-headed much of the time.

     
    Old 11-02-2008, 06:51 PM   #4
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    Re: Swollen/Fat tongue with hypo ???????

    Swollen tongue can definetly be a symptom of hypoT. It was one of my symptoms - I had the teeth ridges on sides - it drove me nuts. My doctor was not all that concerned about it but did agree it was due to my low thyroid when I was first diagnosed. That was June year before last.

    I finally have reached what seems to be my optimal dosage and the swelling has been gone for the last 6 months.

    Thyroid issues are really confusing. My sister, Mother and I all have low thyroids but, not necessarily the same symptoms when diagnosed. Neither of them had the swollen tongue.

     
    Old 11-02-2008, 07:03 PM   #5
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    Re: Swollen/Fat tongue with hypo ???????

    This is called a scalloped tongue, and can be a sign of hypothyroidism.

    I did not have then when I was hypo, but have recently discovered that I have started clenching my teeth (Bruxism) and it is also a sign of that. Do you happen to have white lines are each side of your cheeks where your teeth meet (almost like bite marks)?

     
    Old 11-03-2008, 01:19 AM   #6
    caseymay
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    Re: Swollen/Fat tongue with hypo ???????

    thanks for your replies - you know I sometimes wonder if I imagining these symptoms so it is reassuring to know I'm quite normal!!

    Yes, the sides of my tongue aredefinitely scalloped. I showed dh and says my tongue is double the size and can see the scalloping too. heckofagal - you had me looking in the mirror at the sides of my mouth and yes I do have the white lines. I do grind my teeth at night occasionally. Last weekend I woke up and my jaw was almost fully locked and my cheek was numb. It was quite painful and took a couple of days to subside. I assume it was rom the bruxism!

    Anyway, off to the endo in one hour - will report back later!!!!!!

     
    Old 11-03-2008, 06:20 AM   #7
    caseymay
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    Re: Swollen/Fat tongue with hypo ???????

    Hi everyone again. Well I have been to my endo and he said that my thyroid results are normal so nothing to worry about there. He said he wasn't concerned about getting the antibodies from the lab as all he was interested on was the FT4 and FT3. He looked at my tongue and agreed it is large.

    He is doing lots more tests including FBC, IGF, GH, ESR, liver function tests, CRP. He wants to rule out Acromegaly (pituitary disorder that can cause the big tongue) and he is looking for presence of autoimmune / inflammatory disease. Get the results in about 3 weeks. I'm convinced the tests will be normal and I'll be back to square one! He said my LH (which is always high anyway and indicates my PCOS) is extremely high - more than you would expect in PCOS so things are going screwy. Also my pituitary tumour is not shrinking after about 8 years tmt so he wants to investigate why. I'm convinced the tests will be normal and I'll be back to square one!

    Just thought I'd let you know. Thank you so much for your support. ;D

     
    Old 11-03-2008, 08:15 AM   #8
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    Re: Swollen/Fat tongue with hypo ???????

    Well at least he ran tests on you and looks at the Ft3 and Ft4 levels. Are you getting copies of your labs. Normal FT3 and FT4 levels may not be optimal for you. How is your Endo treating your PCOS? It looks like he is looking into insulin resistance as well as some common genetic communication loop failures that can occur, IF his tests are an indicator.

    Swollen/enlarged tongue is a sign of many things. The biggest culprite is a sleep disorder (hypopnea/apnea). Second is oral immune allergic response, this can be triggered by autoimmune conditions periodically. Third all the other rare stuff. Have you been tested for sleep issues? If you are negative for a sleep disorder AFTER an accredited sleep study, then Hashi's/hypothyroid is probably the biggest reason.

    Thyroid hormone levels fluxuate. You can not trust that your levels will stay at optimal once optimal is achieved. ESPECIALLY if you still have an active/under active thyroid. Having Hashimoto's and having to deal with tissue destruction T4 hormonal dumps makes things even worse.

    I am glad that your MD at least looks at the FTs. What is the optimal range he is aiming to achieve with you? OPTIMAL range is a very important question. IF he just wants you in NORMAL range.. well you could be hypothyroid and in need of medication. TOO many MDs keep us under treated because they refuse to search for our INDIVIDUAL optimal ranges which reside SOMEWHERE in the NORMAL STATISTICAL range. I truly hope that this latest round of blood work sheds some light on your issues.

    MG
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    Old 11-04-2008, 08:09 AM   #9
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    Re: Swollen/Fat tongue with hypo ???????

    I do think something is up with your thyroid and maybe your adrenals. Whether or not the thyroid is the source or the victim will need to be determined through different tests. You will need adrenal testing to be sure if your MD didn't do that already. I am betting if the thyroid is the source that Hashimoto's is your issue, just because it is the DOMINANT pain in the neck for most people.

    Your FSH and LH are extremely high. DO you also have high triglycerides and normal to high cholesterol? These are added PCOS indicators and additional indicators of adrenal dysfunction. Have you had your progesterone, DHEA, estrogen, and testosterone levels checked. This another must for PCOs patients. FINALLY did the Endo test your for insulin resistance? PCOS and IR go hand in hand. IR can cause MANY hypoT issues.

    The puffy face and swollen tongue... do you have breathing difficulties as well when these arise? When I was having a hyperT flare early in Hashimoto's my eyes would swell shut, my face would go red then dry and crack later around my eyes, I would have migraines, difficulty breathing and swollen tongue and throat. The only thing that worked to knock it back was 20 mg of prednisone for 3-5 days. Then I would have a hypoT spurt before the next hyperT flare. The swings became frequent enough that every other week I was hypoT or hyperT. My blood work was normal except for my liver being a tad high and my triglycerides being double normal at the time of these incidents. The only issue my panel of MDs saw as abnormal was that I had was Hashimoto's antibody levels near 300 in both TPOAb and TGAb.

    MG
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    Old 11-04-2008, 08:42 AM   #10
    caseymay
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    Re: Swollen/Fat tongue with hypo ???????

    thanks for the prompt reply mkg. I had not thought of the thyroid being the victim rather than the cause. A very interesting thought.you mention adrenals - I'm not sure if I have had tests for that. The only tests I have had so far are:

    TSH 0.94 mIU/L (0.46 - 4.68)
    Free Thyroxine 14.5 pMol/L (10.0 -28.2)
    Free Triiodothyronone 6.2 pMol/L (4.26 - 8.1)
    FSH 6.9 (1.7 - 11.7)
    Lh 49.3 (0.7 - 13.8)
    Oestrodial 130 pmol/l ranges vary due to where you are in monthly cycle - I don't know what ranges to apply as I don't have egular cycles - endo said results are fine.

    Results pending:
    LFT
    CRP
    IGF-I
    GH
    FBC
    ESR

    that's all of them. Is one of these looking for Insulin resistance? i know he's looking at acromegaly purely based on my big tongue(I'm certain I don't have that!) And he mentioned inflammatory diseases??

    I have never had tests for high triglycerides and cholesterol. I have not had my testosterone, dhea, or prog tested for ecently either (my test. and prog. is usually screwy anyway from the PCOS.) the metformin is taken based on the presumption that the PCOS is due to IR although I have never been tested for this either.

    i have not had breathing difficulties. I suffer from migraines and/or visual disturbances (flashing lights) and my face does get puffy but not to the extent like yours does.

    No idea if it's related but I keep having serious choking incidents. I went to MD but he dismissed it as ordinary choking. Thing is, when I choke on some food or a drink (not an allergy at all) I REALLY choke badly to the point of lying on the floor feeling really dizzy and I cannot breath. I am not coughing because I can't, I am simply gasping for breath. I have on 3 ocassions been convinced I was going to die. (probably not related - I'm just a bad choker!)

    Is it worth me trying to get my antibody results from the lab even though my endo said they don't matter? I see from your own diagnosis these were significant!

    Thanks SO much - you are a great help x

     
    Old 11-04-2008, 10:03 AM   #11
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    Re: Swollen/Fat tongue with hypo ???????

    Get a COMPLETE copy of your lab work including values and ranges. Your MD should have this and release this to you upon request. Given the tests you listed it looks like he ignored the thyroid antibodies. AARRGGGGHHHH! That makes me want to scream and bite someone. Are there anyother Endos you can try out. I doubt the ability of this one to treat you.

    IGF if high is an indication of insulin resistance. He should have ordered a glucose tolerance test to go with this... it allows for cross confirmation of the insulin resistance by hypoglycemic detection.

    I do think that your Endo needs to run the autoimmune thyroid disorder tests. Hashimoto's thyroiditis is and INFLAMMATORY AI of the thyroid. It effects other systems. AS an ENDO he should know this.. but I have been surprised at how little some MDs know.

    Other tests he has ordered:
    CRP, C reactive protein is a test of value in medicine, for the purpose of determining the presence and intensity of inflammation. This is not the telltale diagnostic sign of any one condition. So it will tell the MD what he knows from physical examination you have inflammation.. not the source of the inflammation.

    ESR, erythrocyte sedimentation rate; This is a very old and basically useless test. It will tell if you have an infection or source of inflammation.. nothing more. Given the CRP this is just a waste of blood and money. Redundant!

    FBC, full blood count; This will tell him if you are ill with a viral or bacterial component.

    LFT - Liver function tests You will know how well your liver is holding up.

    GH - Growth HormoneIf one is low in this as an adults it can cause weight issues. Adults need growth hormone to maintain a healthy muscle:fat body ratio. Too little and you get fat. GH levels also affect the composition of the bone and cholesterol levels in the blood.

    Oestrodial - estrogen measurement. You should be highest during ovulation. This is a window of five days in the middle of your cycle. Looking back you should be able to determine your phase, after you have your next period.

    He did not appear to do much. He should have runthe thyroid antibodies as well as the supporting hormone testes for PCOS: progesterone, DHEA, testosterone. PCOS tends to result in high testosterone, estrogen, and DHEA for females as well as low progesterone. Did he bother to send you for an ovarian ultrasound? This is also needed in determining the stage and severity of PCOS. IF your ENdo is unwilling your OB should be willing. Most OBs know how the thyroid can effect a womans cycles and mood. As a result they tend to be willing to tesst you thoroughly if you request it. Mine will run any test I ask of her.

    If I was you, I would go in with a list of tests for your Endo and tell him you want these run and leave it at that.

    MG
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    Last edited by mkgb; 11-04-2008 at 10:07 AM.

     
    Old 11-04-2008, 10:25 AM   #12
    caseymay
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    Re: Swollen/Fat tongue with hypo ???????

    Thanks. When I go for my results I will take a list with me. I am going to come down tough and insist I be investigated thoroughly. I DID have antibodies done and he was supposed to call to get the results on Monday but he said he wasn't interested in the antibodies as they wouldn't tell him anything. he was only interested in the FT4 and FT3 so wouldn't call for the results. I will chase them up.

    I have had lots of scans on my ovaries and they have been polycystic since I was dx with PCOS back in 1997. Haven't had one for a few years though.

    Thanks so much for your help. You are my hero!!!

     
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