Aa
A
A
A
Close
Thyroid Disorders Community
26k Members
Avatar universal

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 On the medication, she became extremely withdrawn, would not leave her house, had heart palpitations, wouldn't eat, cried all the time, and was almost suicidal.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?
9 Responses
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.
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)?  

Avatar universal

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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Have an Answer?
Top Thyroid Answerers
649848 tn?1534637300
FL
Avatar universal
MI
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.