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Could I have a pituitary or hypothalamus tumour?
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Could I have a pituitary or hypothalamus tumour?

I've felt terrible for nearly 2 years. I was diagnosed with hypothyroidism 6 years ago following the birth of my son. I don't know if it's Hashimotos or Post Partum Thyroiditis.
I made a mistake with my thyroxine, and was taking 200mcg daily instead of 100mcg for 3 months. I have been back down at 100mcg for 4 months.

On 200mcg my test results:       TSH 1.04    FT4 12.9 (10-20)     FT3 3.5 (3.5 - 6.5)
4 months on 100 mcg results:    TSH  0.03   FT4  15.6               FT3  5.8

This looks weird to me. Shouldn't my TSH  have been low on a higher dose and higher on the low dose? I'm wondering if I have a pituitary or hypothalamus problem, because of troublesome symptoms:

I've always loved to sleep, and really needed it, but I've needed to take a nap daily on top of my 8 hours at night. Lately, I've been needing 2 naps. I get awful headaches over and in my eyes and also at the back of my head. When I try to keep going, I slow down until I can barely move. I end up motionless on the couch, in blinding pain with my eyes and head. As you can imagine, I can't work or study and my kids and husband are missing out. I wake up every single day, feeling like I haven't slept.

I have a very strange problem with heat. I get sudden hot flashes about 10 times a day. When I eat, whoosh! Suddenly BOILING. Have to strip off to cool down. Just making breakfast heats me up, having woken up cold and shuffled downstairs in 2 sweaters. My family is freezing cold because it's 16 C in the room because the heat isn't on yet, but I'm opening windows so I don't faint. Taking the dog for a walk, everyone else is wearing coats and hats, but I'm in a t-shirt and exploding with heat. My neighbours think I'm nuts. My ob/gyn has tested me and says it's not early menopause.

The brain fog and exhaustion have been a constant problem throughout this time, even when my levels were all "normal". The heat problem was even worse when my levels were "normal" - I actually spiked fevers for 6 months, several times a day and ended up in hospital for a week a year ago, for testing.

I've been tested for every illness and disorder they can think of. I've had CT scans, radioactive tests searching for tumours, blood tests for infectious diseases and a spinal tap. Blood tests always show my C-Reactive Protein level at twice normal or higher, and often my platelets are high. My potassium is 5.5 - too high, but GP doesn't seem bothered by it. My Vit D is low (even though I take a supplement). My ferritin is low, but blood iron and transferrin are normal.

I'm currently seeing a rheumatologist, who's tested me for Lupus. That's negative, thank g-d. They really want to label it Chronic Fatigue Syndrome and send me away to sleep and struggle out of their eye-line. But they can't label it that unless my blood tests all come back normal. But there's always something going on. Mostly, this C-Reactive Protein thing is the problem for them.

I want to see a neuro-endocrinologist, but they're in short supply round here, so I need all the research I can find to argue my case with my GP.

So, after my long story (sorry!) what do you think?

Thank you for anyhelp you can offer.

Suzie
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18 Comments Post a Comment
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1139109_tn?1326332522
Your symptoms sound a lot like mine. I had attributed them to everything under the sun including thyroid issues, chronic fatigue and fibromyalgia. I have a lot of issues with heat/cold intoleranace...one moment cold/next boiling hot. Back in 2004 it was found that I had a pitutary adenoma (Non Functioning/Secreting) and have had 2 surgeries since. I would definitely get it checked out by someone that is VERY experienced with dealing with pituitary tumors in particular Keep trying until you find someone that will help you! If I can help suggest anything else, please post and let me know! Good Luck and God Bless!
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Wow, thank you so much for responding to my posting. It's amazing to hear from someone out there with a similar story. But I'm wondering - if I had a pituitary adenoma, wouldn't it have shown up on a CT scan? I had one in April.

Did you find it very hard to find a doctor who would listen to you properly, and get to the root of the problem?

I hope that you are healthy and well and enjoying life!

Suzie
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657231_tn?1390151580
CTs will not show pit tumors - unless they are huge.

I would get more testing from your GP - you are not getting enough to make a case for a neuro-endo. If all this happened after your son, look up Sheehan's syndrome, and get tested for IGF-1, FSH, LH and ACTH - you may be hypopit or panhypopit.

Good luck at getting the referral!
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Thanks rumpled - I'm slowly learning to battle for treatment. It's hard to be feisty when I feel like I haven't slept for 6 months. Knowledge is power - thank g-d for the internet!
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1139109_tn?1326332522
Sorry it took me this long to get back on here SuzCat:
I'm not sure where you live but yes, make sure that you keep on with someone. You can start with your Primary Care Dr. It's very important to have someone that will listen to you and take you seriously. If in your "gut" you feel that something is just not right, keep pressing to get it checked out. If the person you currently go to is not listening or sympathetic to the issues at hand you may have to find someone else that will be willing to help you. The testing that I have had since the Dr's found out that I had the Pit tumor wwere all MRI's of the brain with contrast being injected the last 15 minutes of the procedure. I re-read your 1st post and the symptoms sound so much like what I've been going through since the surgery to remove my pituitary tumor is something else. I would definitely try to get your primary care to help you. If they are unwilling to do so, try someone else or definitely try to get with an endocrinologist for their take on what is keeping all your blood levels going up and down. Good luck and please email me! I'd love to talk with you!
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Avatar_f_tn
Happy New Year! Thank you for contacting me again. I really appreciate it. I feel so alone with this horrible crappiness. My friends are very sweet and patient with all my complaining and inability to go out anymore, but it's great to hear from someone who really knows how it feels.

I finally got an appointment with a neurologist. I see her on January 20th. Fingers crossed for something, anything to help. Is it weird that I'm hoping she'll find something she can treat, even if it's a tumor? I just can't face living with this constant heache and exhaustion for the rest of my life.

How are you doing with your medical stuff?

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Avatar_f_tn
Happy New Year rumpled.
I have my first appointment with a neurologist on the 20th Jan. But its hard to wait, because, in addition to my usual symptoms, I've had a headache for 2 weeks.

It's always there. Usually, like now, it's a dull pounding over my left eye. Once or twice a day it moves to above my right eye. A few times a day I get a sudden stab of lightening over one of my eyes, flashing down thorugh the top of my head at the front.

There's a pressure in the back of my head that fades and reappears. My left eye feels odd - like my vision should be blurry from that eye, like after I've rubbed it.
But I haven't rubbed it and my vision is fine, it just feels like that eye is struggling for focus. Even when I close my eyes. I think what i'm feeling is pressure in that eyeball. Like it's slightly inflated. Advil doesn't help at all.

I just had a flash of sliver pain along the top right of my head. Now my left eye-socket is tingling with faint pain and my eyeball feels like it inflated a little more. My left eye-lid is a bit closed all the time. drooping. Now another silver flash (it feels like it's silver, I don't know why!) on the top left of my head. These streak from front to back.

I can just about cope with it, but it's very tiring and I can't do much. Reading is hard.
I feel queasy at times throughout the day - when I get into bed at night it's terrible. I feel like the room is tilting. I get that during the day too, but at night it's ghastly.

What do you think this is?

I really need to hear something, anything. Please send me a comment.
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875426_tn?1325532016
Sounds a lot like a migraine with some vertigo to boot.   When you've had a headache for that long, you should be checking your blood pressure and going in on an urgent/ER basis to try to abort it with some medication.  Hint- if they offer morphine, that is not a good one a neurologist told me for the head and I don't know of anybody that toradol has worked for them for a migraine (maybe you'd be a first)?  A shot of phenergan intramuscular might be something you could ask about.  It is good for nausea, helping you sleep, and may even make a big dent in the migraine pain.  Hurting while you read can be a sign of migraine.  Hurting behind an eye can be another.  Nausea with or without vomitting can be another.  Visual disturbances can be another.
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657231_tn?1390151580
I would get back to a neuro-endo and neuro optho as soon as you can get in. It sounds like you need testing and monitoring.

Have you been able to get appointments?
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1139109_tn?1326332522
I agree with Rumpled....you definitely need to get in with the Neuro-Endocrinologist for sure and an eye specialist would be in order to help rule out any other issues. If all you have had is Cat Scans I'd insist if it were me on someone doing an MRI because the MRI is the one defnintive test that shows "soft tissue" defects, tumors etc. Try to take it easy on yourself and know that there are those of us that understand what you're going through because we've already been there. Those Dr's are there to assist you in taking care of yourself and you pay their wages. Insist on them helping you! Good luck, Godspeed...am here if you want to talk! :o)
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SurgiMenopause - Thank you for the migraine info. The main is tolerable right now, but I've made a note of your advice in case it suddenly escalates into a proper migraine and I'm screaming for pain relief!

Rumpled - I'm seeing a regular optho in 5 days as a pre-requisite for my neuro (regular, not endo) 10 days after. I've been told I've got to see regular ones first, then get passed along to the specialists' specialist if needed.

I'm sitting here with a strange headache over both of my ears. I wonder what THAT's about? As a twist on my usual crazy heat problem, Friday night my family was sitting around reading the newspapers, all of us cold and wrapped in blankets. Suddenly my ears flamed red hot! I had to sit with ice packs on my ears - whilst my body was still cold - too cool them down because it was very uncomfortable.

Something is definitely wrong with my wiring!

Sugarsmommie - Your sympathy means so much to me, thank you. This last year I've been absolutely positive the doctors were barking up the wrong tree, and tried pressing for an MRI, but i was scared to insist and come off seeming like a hypochondriac - ending up getting no help at all. But now I'm going to PUSH! Yeah, you're right - I pay your wages, buddy!

Thanks for your clarification on what MRI shows as opposed to Cat Scans. Do you think it's good to get it done both with and without contrast to get as much info as possible?

Would you mind telling me more about your story? What your symptoms were and how you got diagnosed? Please message me if you don't want it out here in the public domain.

Thanks guys.
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I almost couldnt believe what I was reading when I read your post.  I know it is 3 years old.  I am wondering how you are now.  I was diagnosed in 1985 with hypothyroidism and have been on medication ever since.  I have taken the "standard" levothyroxin (levothyroxine) (aka Synthroid) and I have taken Armour thyroid and I have also taken Levoxyl PLUS Cytomel (T3 or liothyronine).  For YEARS, I have a history of having low T3 and T4 but without an elevated TSH and all doctors use the TSH as the "Gold Standard' for how your thyroid is doing.  For years, I have been very sick with symptoms and have had doctors very dismissive because "your TSH is fine".  Finally two weeks ago at my endocrinologist visit, I asked him point blank. "So you have never had a patient with low T3 and T4 who has TSH's that are not elevated?" and he said "Just one, but she had a different kind of hypothyroidism."  I am a transcription editor and wasnt aware of any other kind.  He talked about secondary hypothyroidism in which case it comes from as he said "A sick pituitary".  My levels are very low and I am very sick even on supplements.  His expression seemed like he felt bad that he hadnt noticed this after looking at my records.  I dont know where I go from here but I can barely work, have headaches and feel like I am living in a furnace and cant breathe.  He said we "may" have to treat your symptoms based on your T3 and T4 levels.  After all these years, maybe it is possible they have found what is wrong.  Researching this, I have found that "secondary hypothyroism" can come from either hypothalamus dysfunction or pituitary tumor.  I was checked for that years ago due to elevated prolactin but dont have it.  I wish I could find others who have gone through this.  I wish you well.
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657231_tn?1390151580
Time to find another endo. I will though give you other information - when the pituitary or hypothalamus is not working - the TSH will be low. For instance my TSH is about .0006. So while an elevated TSH is a low thyroid - (it is so confusing!!!) when the pituitary is not getting a signal to produce TSH from the TRH or just the pituitary is wonky - the TSH is super low. The TSH rises when the thyroid itself is not working as it is trying extra hard to signal the thyroid. Hormones work in loops so you have to know what is not working and why and then you can figure out the source. The docs *should* know and test the entire loops but they don't.

I could not regulate my thyroid at all until my pituitary was fixed.
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Avatar_f_tn
Thank you for this.  Because I have health insurance through my town, this is the only endo I can see and who is on staff at the hospital I have to go to.  When you say your pituitary was "fixed", do you mean a tumor removed?  I was tested in the late 1970s after the birth of my daughter (because of prolonged galactorrhea and slightly elevated prolactin) but it was negative (my doctor then was Deepak Chopra who is now quite famous)  I have had MRIs of the brain since then for other issues and they have all been normal.  My recent T3 uptake is 70 and free T4 is 0.91.  He actually sent me a letter on this and after last visit had them to these test on the blood left from my TSH which was 0 point something.  Is a pituitary tumor the only cause of "secondary hypothyroidism"?  I hear a lot about the hypothalamus too.  He said in the letter to stay on same amount of medication (right after telling me my levels were normal).  I cry to my husband and apologize for my tears.  I am mad as hell that I can live my life and doctors have dismissed my symptoms for years.  A few years ago I decided to try (despite my fatigue, weight and age) things I wanted to do.  I hiked long hikes, I snowshoed, kayaked, even climbed some of a mountain.  I did a 5K in June of 2011 (walked most of it) and now I cry because I feel robbed of having a life and I dont feel anyone is listening.  I told this doc that I dont want to be seen as a "malingerer or hypochondriac"  Years ago, I one a contest on metabolism.com (run by Dr. Pepper)  I submited a story of how I want to live better.  Beth Ellen DiLuglio , who is amazing, worked with me (on the phone and online) for a few weeks.  She told my point blank after reviewing my labs "your thyroid levels are low and your TSH is not elevated (Never has been).  This means there is something wrong with your pituitary.  I reluctantly mentioned to my PCP who just looked blank at the time.  I hope to get some support and give some support on here.   Thanks for your feedback.  I replied to suzcat a couple days ago but not sure she got my reply.  When reading her symptoms, it was as if I were reading my own.  
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Avatar_f_tn
What needs to be done to show a pituitary tumor, an MRI?
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657231_tn?1390151580
If all this happened right after childbirth - it sounds like "Sheehan's Syndrome" may be a factor here - and the damage may not be obvious.

You need a pituitary MRI - so you need a dynamic pituitary MRI. So many of us have been through this and so many doctors overlook pituitary issues. It is sad, but true.

I had a couple of pit tumors and yes - I finally had surgery and after a while, I finally could get my hormones regulated only by doing everything by taking all replacement hormones. Your PCP would look blank - sadly they seem to omit pituitary in school even though it is so important!
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Avatar_f_tn
Hi SuzCat!
I read your post. I have very similar symptoms to yours . I was wondering if you did the MRI?
Did the specialist finally diagnose your problem?
I am very sick and would appreciate your reply.
Cheers,
Sep
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657231_tn?1390151580
Sadly, Suz-cat posted several years ago, so I am not sure she will reply. Hopefully she is lurking around.

I hope you are getting imaging, and copies of everything, and do ask questions we will try to respond as best we can as patients.
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