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VERY high TSH
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VERY high TSH

(sorry that this is long)
My mother is 59 and petite.  She does not have any of the typical hypothyroid symptoms except depression (which she has had her whole life). Several years ago, she was found to have a high TSH level (I think in the 20-30 range) and tried several different kinds of thyroid medication.  She was unable to tolerate any of them.  We met with an endocrinologist and tried greatly reducing the dosage (1/4 of a pill every third day) but she still could not tolerate the medication.  The doctor wanted to get her TSH around 10 (which is still high, but would be better for her, he thought). On the medication, she became extremely withdrawn, would not leave her house, had heart palpitations, wouldn't eat, cried all the time, and was almost suicidal.  This happened with every brand of thyroid treatment she tried. Her TSH level fluctuated between 15 and 50 and she felt lousy the whole time on medication. The doctor could not give us a good reason to continue treatment that made her sicker than she had ever been, so she chose to discontinue.  The results were amazing.  She went back to being her old self again.  She feels good.
When she went in for a medical checkup this month, her TSH is at 61.  She doesn't want to try the medication again.
We asked if something other than thyroid could cause these results and the doctor said there are rare causes out there but wasn't willing to look into them.

My questions:  What are the REAL consequences of doing nothing?  What other conditions could cause such a high TSH?  If she feels good, is there any reason to pursue this further?
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219609_tn?1210351714
I am going throught the same thing, TSH was 118 and now 2.1 but I have felt awful with all meds given, tried different brands, no avail.This has been going on for my for two years. I had wanted to stop the meds also but my doc insist I give it time for if my TSH stays at a high level, and have any kind of heart problems, or any major orgin fail on me I would go into a coma and not come out of it. Given this I feel somtimes to just stop meds and die feeling good then go on like this.
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277535_tn?1218139798
Did she have just her TSH checked or did she also have freeT4 and freeT3 checked as well?  If her TSH is high then she should have had her frees checked.  If so, what were the values?

Has she had any other tests on hormones produced by the pituitary (ACTH, Prolactin, LH, FSH)?  

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It would be interesting to know your mothers FT-4 and FT-3.

What is meant by "She was unable to tolerate any of them"

If you mean depression, then she needs separate treatment for that. It might not be the meds. but rather the hypo condition. Thyroid disease can play havoc with every part of the body, mind and emotions. Also exacerbate existing body, mind and emotion conditions.
A lot of us are on either antidepressants or anxiety medication. And some times we have to try different ones or a combo of two, before finding the one that works for us.

The natural course of hypothyroid is for the thyroid to eventually burn off. However, how long that would take is an individual matter.  It could be a few years or 30 years, and for some possibly never.  Mean while it can have adverse effects on the body if untreated, as well as, long periods of untreated hypo can cause coma and/or death.  

A lot of us feel good with our thyroid condition, but it doesn't mean that the thyroid condition is still not there as a health problem.
Some people prefer having thyroid take out through surgery or RAI to stop the fluctuation levels, getting the process done and over sooner than later, so they can get on with their lives.  However, thyroid meds. will still need to be taken for life.

If her mind and emotions/depression is the issue, she needs to be treated separate for it and separate from thyroid, perhaps by a professional in that area. Treatment doesn't necessarily mean forever, but just long enough to get us over the rough spots of thyroid. This is nothing to be a shamed about, because it its not your mother, its the thyroid condition and a lot of us go through it. I myself go through what is refered to as "Graves' Rage" and I am on medication to control it.

Your mother needs her thyroid medication, and, perhaps treatment for her mind and emotions.

Good luck to your mother, I really feel for her.
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Thanks for your comments.  My mother is also a recovering alcoholic (sober over 15 years).  She took antidepressents and antianxiety drugs in the past and felt too out of control.  She is always concerned about addiction because of her past.
The endocrinologist told us that she could have potential heart problems by not treating her thyroid but that all the studies were done 40 years ago on cadavers.  He couldn't site anything concrete regarding potential effects (i.e. coma and/or death) that would offset continuing the suicidal/antisocial, sick feelings she was having while on the meds.
I will pass this information on to her.
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Avatar_n_tn
Sounds EXACTLY like what my mom has been going through.  She decided she would rather take her chances and die feeling good than live life being completely miserable.
Hang in there.
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She has had all her thyroid levels checked but I don't have her results with me today.  I can get them.

We asked the endocrinologist specifically about testing her pituitary and he said that it was unlikely that it was the problem so he wouldn't order the tests.  Sounds like we need to find another doctor.
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277535_tn?1218139798
Post her results when you get them.  You might want to do some research on thyroid problems and alcoholics.  I remember reading somewhere about problems alcoholics will have with thyroid function...don't remember exactly.  Alcohol takes a toll on the body and the mind.  

My mother is an alcoholic as well.  She has been all my life and she has never remained sober for more than a year.  At times I am surprised her body is still functioning especially the number of times she has ended up in the hospital trying to detox herself.  That is awesome your mom has been sober for 15 years.  Hope you figure out what is wrong, maybe a new doctor would be a good idea.
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Long-Term Hypothyroidism:
Myxedema coma - life-threatening complication of untreated hypothyroidism.
Heart - Thyroid hormone is very important for normal cardiovascular function, so when not enough thyroid hormone is present neither the heart nor the blood vessels function normally. In hypothyroidism the heart muscle is weakened in both its contraction phase, and also its relaxation phase. This means that the heart cannot pump as vigorously as it should, and the amount of blood it ejects with each heart beat is reduced. In addition, because the heart muscle does not relax normally in between heart beats, a potentially serious condition called diastolic dysfunction may result.  Furthermore, hypothyroidism reduces the amount of nitric oxide in the lining of the blood vessels, causing them to stiffen.
Cholesterol and Lipid Levels -  Hypothyroidism is significantly associated with unhealthy lipid levels.
High Blood Pressure (Hypertension). Hypothyroidism - may slow the heart rate to less than 60 beats per minute, reduce the heart’s pumping capacity, and increase the stiffness of blood vessel walls.
Homocysteine - Studies are also finding that hypothyroidism is associated with elevated levels of homocysteine, an amino acid that is increasingly becoming a major suspect in heart diseases.
Iron deficiency anemia.
Respiratory problems.
Osteoarthritis.
Diabetes
Glaucoma. Some research has associated hypothyroidism with an increased risk for glaucoma.
Headache - Hypothyroidism may also worsen headaches in people predisposed to them.
Depression is common in hypothyroidism and can be severe.
Mental and Behavioral Impairment. Untreated hypothyroidism can, over time, cause mental and behavioral impairment and, eventually, even dementia.
Goiter - may cause the thyroid gland to become enlarged and form a goiter (termed a "compensatory goiter")
Hypothyroidism is also commonly associated with iron deficiency anemia and respiratory problems. Some research has associated hypothyroidism with an increased risk for glaucoma.
Develop a small, tumor-like growth of the brain, as a result of your pituitary pushing a failing thyroid gland.
Lungs wouldn't function appropriately so there wouldn't be oxygenating well so the brain function would not be normal.
Hair would dry and fall.
Skin would dry.
Body temperature would drop.
Become hoarse because of swelling of the vocal chords.

The Consequences of Untreated Subclinical/ overt hypothyroidism
Possible consequences of subclinical hypothyroidism include cardiac dysfunction or adverse cardiac end points (including atherosclerotic disease and cardiovascular mortality), elevation in total and low-density lipoprotein (LDL) cholesterol, systemic hypothyroid symptoms or neuropsychiatric symptoms, and progression to overt, symptomatic hypothyroidism (See Table 1 in the original document entitled "Quality of Evidence on the Strength of Association and Risks/Benefits of Treatment of Subclinical Hypothyroidism") guideline.gov 2004 Jan

a relation between subclinical hypothyroidism and depression has been suggested (27–30). Monzani et al. (29) observed anxiety, depression, hysteria and other somatic complaints, which improved with thyroxine treatment. Recently Pop et al. (30) found depression to be significantly related to increased TPOAb levels, but not to subclinical or overt hyper- or hypothyroidism. Nevertheless, the high Odds Ratios (2.9 to 7.9) found by Pop et al. (30) in all these thyroid disorders, even if not statistically significant, are very suggestive. It seems likely that if the authors had studied more cases they would reach statistical significance. Thyro Link 02.02.2005

The long-term effects of untreated hypothyroidism can be profound. Severe, prolonged hypothyroidism can lead to multiple abnormalities within any system of the body including heart, brain, and skin. Untreated hypothyroidism can cause heart disease, osteoporosis or thinning of the bones, and infertility in women.
If left untreated for many years, severe hypothyroidism can eventually lead to death. University of Illinois Medical Center at Chicago 2006

Hypothyroidism carries serious physical and mental risks for all ages.
Effects of Hypothyroidism and Subclinical Hypothyroidism on the Heart Effects of Hypothyroidism and Subclinical Hypothyroidism on the Mind Other Health Effects of Hypothyroidism
2007 University of Maryland Medical Center (UMMC).

Untreated hypothyroidism can lead to a number of health problems: ... life-threatening condition is the result of long-term, undiagnosed hypothyroidism. ...Myxedema coma.  mayoclinic  2006


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The Thyroid and the Mind and Emotions - Thyroid Foundation of Canada
The psychiatric disturbances which accompany hyperthyroidism and hypothyroidism, the two commonest thyroid disorders, mimic mental illness. People with an overactive thyroid may exhibit marked anxiety and tension, emotional lability, impatience and irritability, distractible overactivity, exaggerated sensitivity to noise, and fluctuating depression with sadness and problems with sleep and the appetite. In extreme cases, they may appear schizophrenic, losing touch with reality and becoming delirious or hallucinating. An underactive thyroid can lead to progressive loss of interest and initiative, slowing of mental processes, poor memory for recent events, fading of the personality's colour and vivacity, general intellectual deterioration, depression with a paranoid flavour, and eventually, if not checked, to dementia and permanent harmful effects on the brain. In instances of each condition, some persons have been wrongly diagnosed, hospitalized for months, and treated unsuccessfully for psychosis - Thyroid.ca

Anxiety and Endocrine Disease “Anxiety Disorders in Patients with Thyroid Hormone Disturbance” and “Panic disorder/agoraphobia and thyroid disease”.
Recent work suggests that some patients may be biochemically more sensitive to the development of anxiety symptoms in the presence of particular diseases - University of Florida, Gainesville & Johns Hopkins Hospital/ University

Antithyroid antibodies and depression March 15, 2004
A specific form of depression may be linked to thyroid function, new research shows. Antithyroid Antibodies May Signal Difficult-to-Treat Depression

Masked “myxedema madness”.  PubMed
Hypothyroidism can present a wide range of psychiatric manifestations, including personality disturbance, neurotic traits and psychotic features

Psychoneuroendocinology of mood disorders. The hypothalamic-pituitary-thyroid axis.  PubMed
Psychoneuroendocrinology of mood disorders. The hypothalamic-pituitary-thyroid axis.
Abnormal thyroid functioning can affect mood and influence the course of unipolar and bipolar disorder. Even mild thyroid dysfunction has been associated with changes in mood and cognitive functioning. Thyroid hormone supplementation may have role in the treatment of certain mood disorders, particularly rapid-cycling bipolar disorder.

Thyroid and Bipolar Disorder
(updated December 2004)
Message me if you would like the links.

The Thyroid and the Mind and Emotions thyroid.ca
Thyroid conditioned can exasperate existing mental problems or even mimic mental illness.
Thyroid problem, both underactive and overactive, can cause mood swings.  An overactive thyroid may exhibit marked anxiety and tension, emotional liability, impatience and irritability, distractible overactivity, exaggerated sensitivity to noise, and fluctuating depression with sadness and problems with sleep and the appetite. In extreme cases, they may appear schizophrenic, losing touch with reality and becoming delirious or hallucinating.
However the most common effect of an overactive thyroid is anxiety.
An underactive thyroid can lead to progressive loss of interest and initiative, slowing of mental processes, poor memory for recent events, fading of the personality's color and vivacity, general intellectual deterioration, depression with a paranoid flavor, and eventually, if not checked, to dementia and permanent harmful effects on the brain. In instances of each condition, some persons have been wrongly diagnosed, hospitalized for months, and treated unsuccessfully for psychosis. thyroid.ca


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