My thought is that you are wasting your time and money on that Endo.
Many times Endos have the "Immaculate TSH Belief" and only want to test and medicate based on TSH. That absolutely doesn't work for everyone. Other Endos that go beyond TSH often revert to "Reference Range Endocrinology", by which they will tell you that a thyroid test result that falls anywhere within the range is adequate for you. That also is wrong.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation. The letter is then sent to the participating doctor of the patient to help guide treatment. In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."
I have no knowledge about pituitary problems and rate of occurrence of each type. So I really can't speculate on what action would be recommended by a doctor. I don't even know where to start looking for a pituitary doctor.
One thought is that you should probably test further ( cortisol, growth hormone, estrogen or testosterone). to determine if the pituitary is affecting more than the thyroid function. If other areas are not affected, then the best alternative might be to just take thyroid meds adequate to raise your Free T3 and Free T4 levels as necessary to relieve symptoms.
Hopefully some other members can provide additional info. I don't even understand the little bit that I know about the pituitary. LOL
First of all let me give you a little back ground of who I am. I was a nurse for 18 years and then in 1994 I developed Chronic Fatigue Syndrome. I am being treated by a ME/CFS specialist and feel very confident with his treatment. However its the labs that I had drawn in Oct 2012 that have me concerned.
I have not been diagnosed with a thyroid problem nor do I take thyroid medications.
In Oct 2012 I was ill and had labs drawn and the two that I was concerned about was a borderline low TSH of .7 and a borderline low Free T4 of 0.9
My T3 is normal of 124.
These are my symptoms.
Severe Fatigue/mostly bedridden just recent in the last 2 years
Exercise intolerance/ if I exercise all of the symptoms increase
slowed pulse 50-60 bpm in the last year
low BP 80/50 in the last year
Sore throat, swollen glands,Flu like symptoms 24/7
Shortness of breath with minimal exertion such as climbing a flight of stairs
Cold feet and hands sometimes purple in color
I dont tolerated heat
On weight watchers and following it very carefully and can't loose weight
I don't have an appetite either which has been a symptom for over the last 6 months.
Dry Skin on hands and legs
I had some testing done that indicated I have neuroimmune disorder and my body does not handle stress.
Chronic Constipation for 20+ years
Insomnia - only sleeping 3-4 hours per night and I can not initiate sleep until 3am for the last 6months. I was on Ambien CR 12.5 mg, took 2 beanery, and 2 klonopin and I still couldnt fall asleep.
Joint Pain in hands and knees. RF is negative
Abdominal pain, was just scoped and everything is normal.
Severe flank pain
Bruise easily/there are times I have 15 bruises on my body
Thin Nails break very easily
Concentration problems noted on neurophyiatric test. Short term memory is poor and have great diffiuclty learning something new.
Decreased Libido/dry vagina
I have been crying a lot lately and my mood seems to be low and nothing seems to excite me.
My skull was x-rayed and has an appearance of salt and pepper (Pepper pot skull) however my parathyroid hormone is normal.
This is why I think there is some thing wrong with my Pituitary gland.
I have slight hypo labs TSH: 3.79 and FT4 .9 - of course they call this "normal" because it falls in their range. However my Vit D was very low at 18 ( 30 - 80). And that's what they say is causing my Hypo symptoms. Low Vit. D can cause the same symptoms as Hypo - many of your listed symptoms.
"As Professor Malcolm Hooper explains, ‘As a basis for sound scientific research, [CFS] has been a disaster.’ (2001, [Online]) Today there are more than nine different CFS definitions. Just like the original definition of CFS produced in 1988 however, none of these definitions defines any distinct illness, including Myalgic Encephalomyelitis. (Hyde 2006, [Online])
All each of these flawed definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. (Hooper et al 2001, [Online]) (Dowsett 2001b, [Online])
This is why being diagnosed with any of the definitions of CFS is not a useful or meaningful diagnosis and why a diagnosis of CFS should never be accepted – by doctor or by patient – as an end point of the process of diagnosis."
"Some of the illnesses commonly misdiagnosed as ‘CFS’ include:
Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Ross river virus, Q fever, flu, measles, chickenpox, herpes and many other infections)
Athlete over-training syndrome
Multiple chemical sensitivity syndrome (MCSS)
Localised and Metastatic malignancies
Brain tumours, including astrocytomas, gliomas
Myopathic illnesses including: Myasthenia gravis, Mitochondrial myopathies, Post-infectious polymyositis
Vitamin B12 deficiency disorders: Pernicious anaemia, Intentional dietary deprivation, Intestinal disease associated with or independent of M.E.
Rheumatoid illness or lupus (SLE)
Renal or liver disease
Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis, Brucellosis
Various psychiatric and social psychiatric states including: Anxiety neurosis, Uncomplicated endogenous or reactive depression, Clinical depression, Psychopathic personality disorder, Post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease (Ramsay 1986, [Online]) (Ramsay 1988) (Hyde 1992, p 22) (Dowsett n.d.a. [Online]) (Hooper et al. 2001, [Online]) (Hyde 2003, [Online]) (Hyde 2006, [Online])"
"as the doctor stated there isnt enough TSH to make be converted to T4." TSH isn't converted to T4. TSH stimulates the thyroid to produce the T4 hormone, which is, in turn, converted to T3, which is the hormone used by the individual cells. Is your T3 of 124, Free or Total? Unfortunately, total T's are considered obsolete and of little value. Please provide the lab range for the T3. Ranges vary lab to lab and have to come from your own lab report.
So the lab results in your original post are from Oct 2012? TSH is very volatile and there are many things that cause it to fluctuate, even intraday. Tests from nearly 6 months ago would not longer be valid; you should ask for the TSH, Free T3 and Free T4 to be done again to see what they currently are. You should also have thyroid antibody tests, TPOab and TGab, to determine whether or not you have Hashimoto's. With Hashi's, symptoms can show up long before labs really indicate an issue. Almost all of your symptoms point to hypo.
Have you had Vitamin B12 tested? B12 deficiency can cause horrible fatigue, as well as bruising. Left untreated, it can cause numbing, tingling, burning in the feet/legs/hands/arms. I find that I have to keep my B12 levels at the very top of the range in order to alleviate the fatigue and other symptoms.
Even though PTH was normal, have you had calcium levels tested to completely rule out parathyroid issues? Or a neck scan (ultra sound), since the parathyroids are located behind the 4 corners of your thyroid?
Have you had other hormone levels (adrenal, reproductive, etc) tested? Since the pituitary controls all of the endocrine glands, often more than one hormone is affected. A CT or MRI would show if there were a pituitary adenoma or something.
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