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TSH Level Changes/Pituitary Tumor

Hi, I've been having major fatigue, weight gain, heat intolerance, muscle aches, and about a hundred other symptoms for over 5 years.  Doctor after doctor gave me an antidepressant and sent me home.  Two years ago my family doctor found the Epstein Barr Virus on a test and prescribed Provigil for alertness and Cymbalta for aches and pains.  I've also taken Ritalin.  Stimulants don't even touch the fatigue anymore.  I ended up with a brain MRI and I have a 2.2mm pituitary tumor that is non secreting.  My Cortisol is low (5), My IGF-I is low (58, I'm 31yrs old), my TSH was 5, and my Free T-4 was 0.83.  This was June 7th.  On May 11th my TSH was 3.  My Endo doesn't seem very concerned with any of this and she doesn't see anything significant from a ACTH Stim test tomorrow she is going to diagnose me with Chronic Fatigue.  I'm not ready to accept that diagnosis.  I have hypo numbers and hyper symptoms with both Cortisol and Thyroid.  One Growth Hormone researcher online says my IGF-I is way too low and I would benefit from injections which my Endo will refer me out for since she doesn't do the stim tests needed for insurance.  He also thinks I have several weird/rare issues going on and should even go to the Mayo Clinic.  Do any of you see any significance of my symptoms/test results?  I'm so tired of suffering.  I have no life.  My quality of life is next to nothing.  I feel like I have been robbed of almost 10yrs (5yrs ago symptoms got a lot worse).  
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Avatar universal
Are u still there? I would be extremely interested in talking with you as I have simlar symptoms. I can tell you the tests I have had so far and where I am at in diagnosis. But for the meantime, I would insist on a high and low contrast mri on the pituitry gland.
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649848 tn?1534633700
COMMUNITY LEADER
Cortisol is an adrenal hormone and does not determine hyper or hypo in relation to the thyroid.  

Yes, your TSH of 5 is high - the new standard (recommended 8 yrs ago) is 3.0 for the high end of TSH, but a lot of labs/doctors still go by old numbers, usually 5 for the high end.  

Your FT4 seems low, but we would need a reference range to know for sure, since reference ranges are lab specific and must come from your own report.

I can't answer about the "weird/rare" issues - a lot of times just getting thyroid levels under control, tends to alleviate the symptoms.  

I must admit that I'm not real familiar with the growth hormone issue, except that I know our levels tend to decline somewhere around the age of 19-21 (or thereabouts), and continue to decline as we age.  I think this is normal; I guess because we aren't growing any more? Mine were low too, but at my age, I didn't really figure I wanted to grow much more (unless I could grow upwards, rather than outwards.......lol)....except in a mental/learning capacity.  

From my understanding, there are only rare occasions in which a fully grown adult would need additional growth hormone.  

Sometimes, we tend to look more to the rare, unlikely things, rather than those that should be explored first.......

Have you been tested for thyroid antibodies?  For hypo symptoms, you would want Thyroid Peroxidase antibodies (TPOab) and Thyrogobulin antibodies (TGab); for hyper symptoms, you would want Thyroid Stimulating Immunoglobulins (TSI).  

Those tests would confirm/rule out autoimmne thyroid diseases - either Hashimoto's Thyroiditis (hypo) or Graves Disease (hyper) - both cause the antibodies to attack and eventually destroy the thyroid, but they don't work the same way.

You might also want to get your vitamin B12 and vitamin D levels tested.  I have pernicious anemia (B12 deficiency), which  causes a lot of symptoms also -- mainly fatigue/energy levels, tingling/numbness in the hands, feet, legs, abnormally sized (enlarged) red blood cells, etc. I self inject vitamin B12 every 2 weeks; does wonders for the energy levels........

If it's any comfort, a lot of us gave up many years to diseases that were not diagnosed properly.  We've had to fight our way back to health, and even at that, we have our occasional set backs.  The idea is to learn as much as we can about whatever disease we have, then fight for the treatment we need.  

I, personally, have Hashimoto's Thyroiditis/ hypothyroidism.......it was a long road to diagnosis (I suspect 20+ yrs) and it's been a long road back to something resembling what I might consider "normal" for my age; actually maybe even better than normal for my age....

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