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Rare hypothyroid condition - HELP??

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melanie10820
melanie10820

I read a magazine article years ago about a rare thyroid disorder where you have the low body temp and truncal obesity as the two factors that stand out, but it did not give the name of the condition, or the tests needed. I have had periodic episodes over the last few years where my diastolic BP shot way up and I have genetic high cholesterol. One ER visit years ago the blood tests came back positive for hypo thyroid and I finally got meds, which helped the weakness and fatigue I was having. However, had to stop due to me having a low cortisol test result and then having to get it checked later when I got home from the big hospital. Have not been able to get back on the Euthyroid since then. Last blood the doc did was for T4, which she said was normal. I am a government, or state hospital patient in South Africa with no private medical insurance, so I am up the creek without a paddle. I am going to have a stroke, or my kidneys will fail first, but I am only 50 and a care giver to my mom with major memory issues, so I need to get a proper diagnosis. I can live with all the other symptoms, but I am determined to find out what is going on. Any ideas what this condition can be folks? I was born with the fat starting from my knees up and my elbows up. I have no upper arm strength, so hanging curtains is a nightmare. I never sweat and if my temp is 37 deg celcius, I am sick. Over 9 days in hosptal for my rare neuro condition - IHH, it was mostly 35, 36 three times and once 37. The ward doctor simply did not believe it! I am desperate for any kind of lead, thyroid doctor, panel, or other way of finding out what tests I need to have done. Thank you folks. Praying for a miracle here.

0 likes, 8 replies

8 Replies

  • mar75090
    mar75090 melanie10820

    Posted

    Low body temperatures, no sweating,. high cholesterol..ounds like you were reading up on common symptoms of Hashimoto's hypothyroid disorder. You were given medication but had to stop to treat your . low cortisol issues. Guess you should get.new thyroid lab results and see why you were refused treatment for your previously dxd hypothyroidism. Maybe treatment of your high cortisol levels resolved your thyroid issues. Did I answer your question?

  • melanie10820
    melanie10820

    Posted

    Hi. I spent 9 days in a neuro ward, which is why I know 100% about my low body temperature and due to a rare neurological disorder - IHH, I have been in and out of hospital for almost 3 decades, so I know what my normal body temperature is. What I read was how having an underactive thyroid can increase your cholesterol levels. Considering I have genetic high cholesterol and been having very high blood pressure attacks every few months, I have genuine reason to be concerned. I also am not neurotic!!! I have always had fat starting from my joints, knees and elbows up, so I am not a "normal" fattie. That and the low body temp and up and down thyroid test results is why I am pretty sure I have the rare thyroid condition I read about. Not a case of wishful thinking, but it is the only thing that fits. I am a government, or State hospital patient in South Africa, which means I pay a nominal amount. However, I will have to try scrape money together for testing at a private lab, which is why I have to know exactly WHAT thyroid tests I need to get. I am assuming that they will not be the standard one's. PS. My local doctors retested my cortisol levels and decided that the endocrinologists at the big hospital were talking nonsense by saying I had low cortisol to start with. Meantime, I still have extreme weakness at times. The final year student doctors I have to deal with are not always any help... Diagnosing a thyroid problem not always straight forward. Since my IQ is over 120 I am not a fool, but I cannot find the right thyroid condition mentioned anywhere on the net. Still looking...

  • mar75090
    mar75090 melanie10820

    Posted

    You have a deficiency in Gnhr. That's what I found when I did a search on IHH. Thyroid tests TSH T4 T3 FreeT3 FreeT4 and thyroid antibodies TPO Tg. You should also have Iron panel, Active B12 and RBC Folate. You may have a methylation problem.but first see what these results are. Stop any Bvits and iron for a week to get more accurate test results. What is your AM body temp? How low do your temps go?

  • mar75090
    mar75090 melanie10820

    Posted

    PS Sorry I just read your earlier post where you gave your body temps. A few years ago I had a body temp of 95 F or 35 C. I felt horrible for one day. A week later I had a high body temp from a tooth infection. Low body temps cause bacterial infections to grow as I found out.

  • mar75090
    mar75090 melanie10820

    Posted

    Just read up on GnHR deficiency. This means your body isn't releasing FSH or LH. Are you being treated for this? This seems to be a hormonal endo condition. not neurologic condition. Unless you were in neuro for another reason. caused by this. condition.

  • melanie10820
    melanie10820

    Posted

    Thanks a mint! Saw surgeon yesterday, as I also have had rectal bleeding for about six months. Had all kinds of intrusive tests, but they still do not know what is causing the bleeding. I have to go back in 4 weeks, so can then bring up the tests you mentioned. I lucked onto a hellava nice guy who will listen to what I tell him. It was about 39 degrees yesterday and I did okay driving there, but when I overheat I stay hot. Had to keeping splashing cold water on to cool down. I definitely have a problem with my thyroid, but my body is so peverse, it will end up being something rare.

    • melanie10820
      melanie10820

      Posted

      Hi there. Thanks for inquiry. I saw a young doctor who had no clue about my case and was not too interested in further testing, so decided to try and see the previous doctor, but that will only be in May. So far bleeding seems to have gone. I cannot afford any tests on my own just yet, have to win the LOTTO, or sell more Alzheimer fidget items. I am a full time carer for my mom and a patient of the State here in SA, so I get to pay very little. If only I could find out what the name of the rare thyroid condition is and what test needs to be done for it, it would help. I have the low body temp, truncal obesity. The fat only starts from my joints, like knees and elbows. It is weird, but I read about it in a magazine years ago as it was an interview with a thyroid specialist from the USA, but I cannot find a copy of the magazine. I also seem to lack certain muscles in my upper arms, so much so that hanging up curtains, or anything that requires me holding my arms straight out, or above my head is always a challenge. My arms just lack the strength. I have every single symptom of someone with severe hypothyroid that is in my mom's medical book (she was a Nursing Sr), even the enlarged tongue, thickened skin, my hair falls out and the real kicker is the enlarged hands and feet, but my jaw also grew. My fingers went up 3 ring sizes!. In 2015 they did pituitary tests, which showed nada except low Cortisol. What gets me the most is the muscle weakness overall. I am built like a rugby linebacker with really broad shoulders and cannot shift the extra weight. A few years ago I had x-rays done as I was getting pain in my hip and leg joints, which I thought was due to a bit of arthritis as I have it in my legs. Believe it or, not, but my body was growing, but my bones are excessively thick, so it is density increasing, not height, apart from bigger hands and feet. (The free bone density test I had done showed my bone density is off the charts). I think that whatever thyroid condition I have is so damn rare, that it will take a miracle, or lucking on that same thyroid specialist to find out what it is called and what tests will confirm it. I have looked wherever I could online. I was born with the same shape arms and legs, so i am pretty sure I was born with this condition. The only other thing is that my parathyroids ???under my jaw are usually big on both sides, though one usually bigger than the other. My mother thinks I am neurotic. As far as Neurology investigation goes, I was booked to see the hospital neuro late last yar, but I cancelled. Last time he told me that I have been treated symptomatically since my diagnosis in 1991 (after the car accident in 1989). I would need serial lumbar punctures before they decide to do a shunt, but I mostly don't get headaches any more and two doc's were unable to do the last LP they attempted. Either scar tissue, or? I got a MRI after 35 years in 2015 as well, but it just showed something on the outer covering of the brain and the report actually stated that they did not know what it meant. Know I just have to not overdo the physical exertion, avoid salt, take my Diamox and get my visual fields tested one, or twice a year. Pretty sure my eyes are getting worse (can only see top two rows of letters on big eye chart and visual fields results are not great, but it is what it is). Hopefully, I will not lose my peripheral vision. I also have to hope my bladder and kidneys do not pack up, as I have very little sensitivity left. Diamox does more than remove appetite and thirst and I am damn upset that the manufacturers are not doing any studies on longterm side effects. Anyhow, if you have any ideas on where to look for rare thryoid conditions. I would love to show my mom I am not neurotic and I hate not knowing the answers to questions I have. Thanks a mint! Ciao, Mel

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