Full Hormone Replacement

[ErikD]

Hello,

I am a 21 year old male. About 13 months ago I had surgery to remove a pituitary tumor and I am now on full hormone replacement. For the most part my recovery has gone great. However, I believe I do have problems with either the dosage (.125mg) of my thyroid hormone or the drug itself (levoxyl).

I have an endocrinologist that has been with me since the surgery and they refuse to change anything because my T4 level is in the "normal" range at 1.5.

Every time I see my endo I constantly complain of many side effects. These effects include fatigue, weakness, WEIGHT GAIN of about 40 pounds, decreased sex drive, depression, and some memory loss. Also, blood tests reveal a trigylceride level of 557 with no family history of high trigylceride and I eat a healthy diet and exercise regularly.

I was wondering if anyone had any useful information for me so I could finally feel "normal" again!

[AR-10]

Have your Free T3 tested. MAKE them run the test.

It sounds like you are hypothyroid regardless of what the test results show. Check your Free T3. Check your vitamin D, also, if it hasn't been looked at.

[ErikD]

How does Vitamin D relate to the thyroid? I am almost positive I have never been tested for it.

[AR-10]

Vitamin D plays a part in conversion of T4 to T3, I think. I forget at the moment. It also helps aleviate mild depression.

People who are hypothyroid are often low on vitamin D.

[Cynnieb4]

Hmmm I wonder if that's cuz were too cold to go outside ar, lol! Ha sarcastic me : )

[corkmom]

haha thats what i was just thinking. i have an adversion to going out in the cold! i am generally a very cold person and always have a jumper on and the heating! i love sunshine but living in ireland we dont get to see it much!!

[LoriD1966]

Well, I would like to know more about the relationship between t3, t4, and vitamin d, but here is what happened to me. My t3 and t4 is low and my vitamin d wasso low that I am on 50,000 iu one day a week. I started this on oct.17th and this has made a big improvement. I am not so fatigue, depressed, weak, and I am sleeping like a baby!!!!!!!!!!!!! A major difference in 4 weeks. My endo said today that vit d will make a major difference! Yes t3, t4 problems please get it checked!!!!!!!!!

[gimel]

Don't know why your doc thinks 125 mcg is a full daily replacement.  I am also on a full daily replacement amount, which was prescribed at 200 mcg.  Also, free T3, along with your symptoms, are much more important than TSH level. In my opinion, any doc who regulates your thyroid med. by checking TSH alone, should be strung up.   FWIW

[ErikD]

Is the TSH level the same as Free T4 level? I am almost positive that my doctor told me that was there was no point in running the Free T3 test because it wouldn't be accurate with my condition.. Does that make any kind of sense? Thank you for the help!

[Thypatient]

Since your current situation is stemming from a pituitary tumor, you might have other factors involved.

Here is a link to the neurology forum of this website that might help you:  http://www.medhelp.org/forums/neuro/wwwboard.html

Good luck.

[stella5349]

Ahhhh   what??

I think your doctor should be running the Free T3 - especially if you are telling him you are having all the major symptoms of hypo.

Vit D is a great test to look at too. Maybe Vit B's too.

TSH is different than the FT4 test.

Are you sure that the 1.5 isn't the TSH lab and not the T4 as you say?

[ErikD]

Yes my Free T4 level is at 1.5, I am positive because my doctor mentioned that the normal range is from 0.7-2.0 and when looking that up online it matches the range for FT4.

I have an appt. scheduled with another endo on december 3rd and I hope things start to change.

[stella5349]

OK

1.5 can also be a TSH number too.

What is your TSH?

Ask for the Free T3 test.

[ErikD]

I am not sure of my TSH number. I called my endo for it and am still waiting for a return call. I was also wondering if my low thyroid symptoms could be made worse by low cortisol function. I am on full replacement of adrenal function with 20mg of hydrocortisone daily. It looks like most of the side effects are similar for adrenal insufficiency and low thyroid function. I have never been tested to see if I am on the right dosage of hydrocortisone. I was wondering if you or anyone knew of accurate tests that could record adrenal function over a period of time.

Thank you!

[stella5349]

Sure -

There are a few adrenal tests -

You may want to look into a 24hr cortisol test done with saliva. I don't know if your insurance will pick up the tab - most don't - but the test is pretty accurate.

There is the urine test and traditional blood lab too. Serum cortisol and ACTH testing can determine some cortisol issues. Those are covered by most plans.

How did you mange to get on HC treatment and not know if really there was an issue?  That's pretty odd?

Yes - your thyroid may not be working with the meds -if your adrenals are not working right.

Usually in Armour patients - this is a sign of adrenal issues when the meds are bouncing back on them.

I take Armour and in the process of getting my adrenals back to working correctly. I really do not know the effects of taking Synthroid and what you may experience if the adrenals are down.

I can't imagine it being anything different though.

[ErikD]

Well during my surgery to remove my brain tumor, my neurosurgeon had to cut the pituitary stock connecting it to the rest of the brain, making me a candidate for full hormone replacement.

What my endocrinology team did was just put me on all of the meds.. Androgel, Hydrocortisone, Levoxyl, and Desmopressin. There wasn't subsequent testing done because they felt there was no need to. The only test they did for the adrenals was to see if they were functioning on there own and they weren't. I am in the process now of trying to adjust my dosages in order to be my old self again!