Secondary Hypothyroid, possible Cortisol concerns

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So last year, after 2 years of being told that my symptoms were “impossible” (20lb weight gain in a couple months), from pregnancy, then postpartum...I was finally diagnosed with Hypothyrodism once my T3 came out low.  Started seeing an Endo, who did labs and my cortisol came back at 5.75. I was concerned but he wasn’t, saying it was in low-normal range. I requested a test to check my adrenals. Did another cortisol lab last week and now it’s at 5.5. My ACTH lab is tomorrow to check my adrenals. My therapist has been concerned about my cortisol levels for a year, and is not happy that my Endo keeps suggesting antidepressants. Anywho...this all seems a little too weird added onto the fact that 18 months ago, when I delivered my youngest, I had a secondary surgery during my csection to remove a brick sized ovarian tumor, my ovary, Fallopian tubes and appendix. They found a 1mm Neuro Endocrine Tumor (NET) on my appendix and that my ovarian tumor was benign. No further treatment was needed because it was caught early. I’ve experienced weight gain, with extremely difficulty losing, fatigue/exhaustion, irritability/mood swings, very heavy periods, low blood sugar (get clammy, hot, feel horrible), feel like death after very hard exercise and exhausted, days of mental fog where I feel like I can barely talk/remember words or my tongue doesn’t move right. It feels like I can’t even think. I also have some intolerance to stress...which is the main indicator for my therapist. I THRIVE on stress normally. It’s ingrained in my basic personality traits to problem solve, but lately I have a total break down when I get stressed. I just don’t feel “good” or right. I am thinking that it’s possibly due to my pituitary, particularly since I have secondary hypothyroid, with only my T3 being low. Any input would be appreciated. I have doctors that don’t believe me...never have. My giant ovarian tumor was ligament pain. My shoulder pain was arthritis for a year until it turned out to be my gall bladder and still took over 3 weeks of excruciating pain to get surgery.  I can’t just find another doctor either because I’m military.  Any input or advice would help. TIA!

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  • Posted

    Oh I should add that i was also diagnosed with benign premature ventricular contractions (PVCs) last year our of no where. I had a full cardio workup in 2013 when they thought my chest muscle inflammation was possibly a heart issue. I’ve also had episodes of vertigo since 2012. Happens maybe a couple times a year, but it’s severe. So intense that I fall and can’t move for a minute or so and can’t tell what is up and what’s down. I was given meclizine to take when I feel it coming on, but haven’t had an episode in quite awhile.
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  • Posted

    Hi Amber

    I’m sorry to hear what you’re going through. 

    If I’d read this post 12 months ago, I’d say wait and see. After my experience of being misdiagnosed over 8 years I’d say demand you are fully checked out! Are you under a Nets team? All of the symptoms you describe I experienced and was repeatedly brushed off until I landed up in hospital. 

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    • Posted

      Thank you for the reply! I am not being followed for NETs and have been told to go to oncology if I experience flushing. My NET was a carcinoid, so I was mildly surprised no further testing was done. My therapist is very nervous that I will also end up in the hospital. She insists I am not crazy. Haha! I have been told that there appears to be no connection to my symptoms and experiences, but I disagree. I’m going to request an civilian second opinion if this continues. 
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  • Posted

    I’ve had similar health problems with similar symptoms. What SAVED me was cutting out sugar completely from my diet. After a month, my health improved immensely. My hormone levels were finally in the normal range, I didn’t get anymore headaches, I started losing weight and I was able to go to the gym and exercise like no tomorrow!!!!! You should do some research on keto diet / low carb diet. The health benefits are out of this world. The best part for me what my hormone issues were causing infertility and I finally got pregnant!!! I’m pregnant so I had to re-up my carb intake, but once I have this baby I’m going to go back.
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    • Posted

      Hi! I’ve tried to reduce sugar, but my blood sugar just gets too low to tolerate. Even consuming sugar, I have lower blood sugars and A1C. 
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  • Posted

    oh this is all so horrible. it is bad enough having a pituitary problem, let alone when the doctors don't believe you. have you looked on the website of the pituitary foundation? they have a document that you can download which is aimed at GPs. it might help to take that along as support when you have your next appointment? 

    as for the stress response....it does sound as though it is all related somehow.

    sending you all the very best wishes as you sort this out.

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    • Posted

      So far, my doctors haven’t even discussed a pituitary problem except to ask if I had visual issues. They didn’t even tell me that I had secondary Hypo, just that my levels were low and started synthroid.  I’m afraid to mention it because they already think I am totally crazy. 
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    • Posted

      Hi Amber, on "visual issues" what they mean is "is your peripheral vision affected?". If it is, by the time you notice, you are getting critical. So best clear this question up early by going to an optometrist (optometrician) and ask for a "field test". It may be included in a general eye exam but not always. Tell the person doing it that you need a hard copy of the report to give to your medic if there are any issues: you are looking for [and hope not to find!] many black marks to the sides.

      But here is a critical point: everyone here sees their own symptoms and thinks OMG you too! What we don't know is which symptoms you don't have or which symptoms you do have that we not had. Your Endo has done years of training on this stuff and know what to look for [99% of their case load is diabetes so they'll be pleased to see something different!] and what to rule out. So we can be very good at scaring newbiesbiggrin . One visitor here turned out to be just overdosing on vitamin pills! Putuitary disease is very rare (1:100,000 per year in the UK) so what you need to think is "almost certainly not".

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  • Posted

    Hi Amber

    It does sound like you have a pituitary tumor

    The reason you dont feel well is the result

    of secondary adrenal insufficiency

    It is the same as AI but because it is possibly

    Your pituitary, less often hypothalamus,

    It is called secondary adrenal insufficiency

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  • Posted

    Also , your very smart and show the doctors your labs

    The thing is, even if your diagnosed with a pituitary tumor

    You require the very best surgeon

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  • Posted

    Hi Amber

    Can you search for specifically a  Pituitary Specialist? not just an Endo!  Most Endos know very little about Pituitary problems.

    An Endo suggesting antidepressants isn't surprising, they do that here too in the UK instead of treating symptoms.

    I have hypothyroidism, severe adult growth hormone deficiency, and high cortisol(not high enough for treatment in the UK).  Mine is due to head injury..damage to Pituitary.

    There is an f book group...Adult Hormone Deficiencies   and there are a lot of knowledgeable people on there most are in the USA.  I think they have a list of  Pituitary Specialists in the USA.  Whichever way they will help you with support.

    I hope you get some answers very soon confused

     

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    • Posted

      I don't believe that this is generally true. Yes, I agree that it is true of GPs (we all have our horror stories) but be fair, your GP can expect to see on average one pituitary case in a career - and you are it. Endos do get bogged down with diabetes melitus cases but the pituitary is such a key part of the endocrine system that of course they know it. My endo knew what was wrong with me from the moment I walked in the room, apparently we have a characteristic appearance. The tests were so as not to not just assume the obvious.

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