Aa
Pituitary
Is there a pituitary problem if your IGF-1 is low and your TSH is high 6.793? I have several symptoms headaches, episodes of vertigo & double vision, weight gain, hashimoto's, partial thyroidectomy with micro papillary carcinoma, heart palpitations, sweating, no tolerance for heat, tired and lethargic.
Help!
MLT60
Help!
MLT60
For several months and my diagnosis of growth hormone deficiency I just feel terrible. Vertigo, nausea, a sense of not caring about anything, so tired. I am still waiting for approval for the injections. I want instant cure and I don't think I will get it. I take so many different medications to try to feel right. Nothing really works.
Feeling frustrated and desperate!
MLT60
Feeling frustrated and desperate!
MLT60
Hi-
I take growth hormone. It was part of what I needed to feel better, given that I don't make any of the pituitary hormones. But it is NOT a magic bullet either.
But over time I noticed that my body composition changed in that I firmed up and lost a little weight. The main benefit for me from the Growth hormone was that it had a positive affect on my mood and I slept better. It took about six months for me.
One big mistake that many people make is that they start on too high of a dose. I strongly rec that you speak with your endo and start low (0.1 mg) and go SLOW with any increases in the dose. I went up in 0.05 mg increments every six weeks til I got to my current dose which is 0.35 mg. Also bear in mind that initiating GH will affect other hormones. I needed to have upward adjustments on my thyroid and cortisol.
Also if you take oral birth control it will affect your ability to absorb GH and make it so that you will have to take a higher dose thus make it more likely that you will have side effects like swelling and joint pain. I switched to a transdermal cream version of est/prog. Some people go to patches, others take these intra-vaginally. There is a support group for people who take GH called the Human Growth Foundation. It has been a very helpful resource for me. You can google it.
Good luck!
I take growth hormone. It was part of what I needed to feel better, given that I don't make any of the pituitary hormones. But it is NOT a magic bullet either.
But over time I noticed that my body composition changed in that I firmed up and lost a little weight. The main benefit for me from the Growth hormone was that it had a positive affect on my mood and I slept better. It took about six months for me.
One big mistake that many people make is that they start on too high of a dose. I strongly rec that you speak with your endo and start low (0.1 mg) and go SLOW with any increases in the dose. I went up in 0.05 mg increments every six weeks til I got to my current dose which is 0.35 mg. Also bear in mind that initiating GH will affect other hormones. I needed to have upward adjustments on my thyroid and cortisol.
Also if you take oral birth control it will affect your ability to absorb GH and make it so that you will have to take a higher dose thus make it more likely that you will have side effects like swelling and joint pain. I switched to a transdermal cream version of est/prog. Some people go to patches, others take these intra-vaginally. There is a support group for people who take GH called the Human Growth Foundation. It has been a very helpful resource for me. You can google it.
Good luck!
I am. It took 6 weeks - when you are on the right dose.
I will be starting to take growth hormone injections for deficiency. Is there anyone else getting GH? I would like to hear their experience, how long they have been on them, how long did it take to start working, did you loose wt, start feeling better.
Thanks,
mlt60
Thanks,
mlt60
You will feel it after 6 weeks or so. As for some people feeling it - huh? If you have had none, and now will have it, you WILL feel a difference, but for some it is subtle.
Do keep in mind that you may get some joint pain at first - that usually goes away once your body adjusts. I sleep so much better and feel better.
Do keep in mind that you may get some joint pain at first - that usually goes away once your body adjusts. I sleep so much better and feel better.
My visit to the endocrinologist went well. Once the insurance co. ok's the GH. I will start the injections. The pituitary is just no producing any GH. I am looking forward to feeling better. Did you start feeling better right away or did it take a while? He did say that some people get relief and other don't.
MLT60
MLT60
Yes, you should be able to discontinue some of those meds once the GH starts working.
But some of the meds may be interfering with testing, too.
But some of the meds may be interfering with testing, too.
The MRI was done with contract and high resolution. With all the symptoms I have, I was really shocked that I didn't have a small tumor. I really wanted some clear answers and I've had none for so long. I sometimes think my doctors are just so done with me and my problems. I want some resolution and I still have none. Everything is usually normal which is good but why do I feel the way I do.
Every afternoon I wake up feeling pretty good by noon and 2pm the headaches start, I feel very tired, restless leg starts in and it's difficult to take a nap. I take medications of Ultram, Mirapex. Rest most of the afternoon. By 8pm I am ready to take more medications for headaches, joint pain, RLS, Lyrica, Prosac (just started), Metformin twice/day and the list goes on. What a routine! I would love to think that some of these medications might be discontinued with starting GH. Do I have any hope?
MLT60
Every afternoon I wake up feeling pretty good by noon and 2pm the headaches start, I feel very tired, restless leg starts in and it's difficult to take a nap. I take medications of Ultram, Mirapex. Rest most of the afternoon. By 8pm I am ready to take more medications for headaches, joint pain, RLS, Lyrica, Prosac (just started), Metformin twice/day and the list goes on. What a routine! I would love to think that some of these medications might be discontinued with starting GH. Do I have any hope?
MLT60
I hope the scan was done properly (with, without contrast, and dynamic), and as it is, there are studies that show that up to 40% of pit tumors do not show up on scans. I had one of mine hide for 12 years.
I hope a stim test is next for you and you get on the meds - the meds will help you out. It takes a while and when you first go on them, you will feel a bit weird (joint pain), but that passes and then you only feel better. I have been taking GH for years now.
I have cardiac issues, but I take it - no problem there. Joint paint is transient for starting - it is like your body has not had it, adjusts, and then usually it goes away. Some people get like carpel tunnel for a while. I know a lot of people on it.
I hope a stim test is next for you and you get on the meds - the meds will help you out. It takes a while and when you first go on them, you will feel a bit weird (joint pain), but that passes and then you only feel better. I have been taking GH for years now.
I have cardiac issues, but I take it - no problem there. Joint paint is transient for starting - it is like your body has not had it, adjusts, and then usually it goes away. Some people get like carpel tunnel for a while. I know a lot of people on it.
My MRI is clear, no pituitary tumor. The reason for lack of Growth Hormone is unknown.
I see my endocrinologist this Wed. Maybe he can give me more answers. I am sure I will still have to have an insulin tolerance test to verify the deficiency in GH. My arthritis doctor says there was a study done that indicated that people with fibromyalgia lack or have no GH. But there is conflicting information on GH some say you will feel better and have less cardiac problems and others say you will have joint pain and cardiac problems. I am not sure what to believe.
I had both labs GH - none, IGF-1 & 3 and all are low. All my tests have been blood samples.
I just have daily headaches, very tired. I have to push myself to do anything everyday.
I would love to have a normal life without something hurting or wanting to lye down.
How do get so many test done to see when it's high or low.
Anyway thanks for all the information
MLT60
I see my endocrinologist this Wed. Maybe he can give me more answers. I am sure I will still have to have an insulin tolerance test to verify the deficiency in GH. My arthritis doctor says there was a study done that indicated that people with fibromyalgia lack or have no GH. But there is conflicting information on GH some say you will feel better and have less cardiac problems and others say you will have joint pain and cardiac problems. I am not sure what to believe.
I had both labs GH - none, IGF-1 & 3 and all are low. All my tests have been blood samples.
I just have daily headaches, very tired. I have to push myself to do anything everyday.
I would love to have a normal life without something hurting or wanting to lye down.
How do get so many test done to see when it's high or low.
Anyway thanks for all the information
MLT60
Wow - no GH? Did they test GH or IGF-1 or both? GH is what the pit secretes, but IGF-1 is what the liver puts out after it metabolizes the GH and is what the body actually uses - so that is seen as the more accurate test.
I also have AGHD and take GH nightly. It is an injection. The nurse will show you how to give in the thigh but honestly, the stomach, which is seems awful, is so much less painful. You just have to get over it mentally.
On another thought, make sure the lab you used was accurate as one of the major labs was having a huge issue with the IGF-1 assay and well, goofed them all up - but as it is, you have to get a stimulation test before insurance will let you get the medication. That test is a bit... grueling.
AGHD has a lot of the same symptoms as Cushing's.
BTW, I would beg to respectfully differ with CJ on the "best" test being saliva for cortisol. Having done them all - blood, urine and saliva, I would not term any of them best, but they all have strengths and weaknesses.
My take:
24 UFC and saliva are "free" and can ve bound by estrogen, high cortisol binding globulin (doctor should test for this, but most do not), many medications, therefore you can get false negatives even if the person is sick. 10 hour urines can be done too.
24 hour test - an average can sometime miss when a high is only slightly high and the lows then drag it down. This happened to me many times.
Saliva and serum - you must be "high" at the very moment the test is drawn and it is a lottery, also tests can be mislanded (in case of urine too).
So you see, IMHO, all the tests need to be done, many times, as point in time and averages need to be seen. My friends and I found that some tests "worked" better for the individual - as some of us knew what times, and CBG did not let free tests work for some as well as high estrogen (even BCP will interfere). I did best with 10 hour urines (as I was high at night) and late night salivas. But I had friends that were only high in blood tests. It takes testing all forms. Most doctors, sadly, may run one or two tests and pfftttt.
I also have AGHD and take GH nightly. It is an injection. The nurse will show you how to give in the thigh but honestly, the stomach, which is seems awful, is so much less painful. You just have to get over it mentally.
On another thought, make sure the lab you used was accurate as one of the major labs was having a huge issue with the IGF-1 assay and well, goofed them all up - but as it is, you have to get a stimulation test before insurance will let you get the medication. That test is a bit... grueling.
AGHD has a lot of the same symptoms as Cushing's.
BTW, I would beg to respectfully differ with CJ on the "best" test being saliva for cortisol. Having done them all - blood, urine and saliva, I would not term any of them best, but they all have strengths and weaknesses.
My take:
24 UFC and saliva are "free" and can ve bound by estrogen, high cortisol binding globulin (doctor should test for this, but most do not), many medications, therefore you can get false negatives even if the person is sick. 10 hour urines can be done too.
24 hour test - an average can sometime miss when a high is only slightly high and the lows then drag it down. This happened to me many times.
Saliva and serum - you must be "high" at the very moment the test is drawn and it is a lottery, also tests can be mislanded (in case of urine too).
So you see, IMHO, all the tests need to be done, many times, as point in time and averages need to be seen. My friends and I found that some tests "worked" better for the individual - as some of us knew what times, and CBG did not let free tests work for some as well as high estrogen (even BCP will interfere). I did best with 10 hour urines (as I was high at night) and late night salivas. But I had friends that were only high in blood tests. It takes testing all forms. Most doctors, sadly, may run one or two tests and pfftttt.
My GP called this morning to let me know that I have no growth hormone. He ordered a MRI of the pituitary. AGHD (adult growth hormone deficiency) could be the problem. More waiting in on hand. I am contacting my Endorinologist today and see what he has to say.
MLT60
MLT60
YES, you have the symptoms! It sounds like thats exactly whats wrong with you.
The Most Accurate test for Cortisol is a salava test. And i had to do the research myself to find that out, no dr had offered one. Its the most accurate because it shows not only the harmones coming through the blood or urine, but actually whats In your cells. They don't look at individuals symptoms when seeing if whatever test being done is `Normal`. What is normal for someone without certian symptoms may Not be normal for someone else with harmonal problems. We are Clumped... Not treated as individuals.
I have the heart palpatations too and stay so hot it feels like i'm cooking from the inside out.
You have gone through all this and Not had an MRI to test for a Pituitary tumor??? Get an mri ASAP and tell them you want a salavia test for cortisol. Don't take no for an answer and then have to wait another 3 months to see another specialist, personally i'd go in the hosptial where theres access to all these drs at the same time, and i might be doing that after i hear from Duke this week. That will be another flight back to NC.
Also have an eye doctor give you a periphial vision test Soon! If the tumor presses on the optic nerve you could go blind.
I have the lactacting tumors and have come to the end of this wait and see game. I Will have Some kind of treatment going on by the end of next week!
I hope this helps
Cj
The Most Accurate test for Cortisol is a salava test. And i had to do the research myself to find that out, no dr had offered one. Its the most accurate because it shows not only the harmones coming through the blood or urine, but actually whats In your cells. They don't look at individuals symptoms when seeing if whatever test being done is `Normal`. What is normal for someone without certian symptoms may Not be normal for someone else with harmonal problems. We are Clumped... Not treated as individuals.
I have the heart palpatations too and stay so hot it feels like i'm cooking from the inside out.
You have gone through all this and Not had an MRI to test for a Pituitary tumor??? Get an mri ASAP and tell them you want a salavia test for cortisol. Don't take no for an answer and then have to wait another 3 months to see another specialist, personally i'd go in the hosptial where theres access to all these drs at the same time, and i might be doing that after i hear from Duke this week. That will be another flight back to NC.
Also have an eye doctor give you a periphial vision test Soon! If the tumor presses on the optic nerve you could go blind.
I have the lactacting tumors and have come to the end of this wait and see game. I Will have Some kind of treatment going on by the end of next week!
I hope this helps
Cj
I was hoping to get test results today but they couldn't find them but he did order an MRI of pituitary. So now I wait for authorization. The doctor felt I was being overly anxious about this and put me on antidepressants. That upset me a little. Depressed I am not but a little anxious yes. I am a retired nurse, and I just keep the hunt going with the symptoms. He also said that even if they find a tumor, it will not solve my problems. Is that true?
MLT60
MLT60
The only cortisol testing endocrinologists have done on me is one blood test in the AM, and one in the afternoon. The one in the AM was normal and the one in PM was flagged low, but the doctor said that was normal, because it goes low in the afternoon normally.
Is 24 hour urine testing better and should they make this a routine test if one has been diagnosed with a microadenoma? You mention no preservative or the right preservative- what is the right preservative? Is this is a test I should be trying to get?
Is 24 hour urine testing better and should they make this a routine test if one has been diagnosed with a microadenoma? You mention no preservative or the right preservative- what is the right preservative? Is this is a test I should be trying to get?
One cortisol test - eh. Was it handled correctly? Did you keep it cold the entire time? Did it have no preservative or the right preservative? That can make the test come out wrong.
I had Cyclical cushing's - so I had a lot of normal, low and high tests - so I was all over the place in testing. If you have symptoms, you have to look for the right doctor.
I had Cyclical cushing's - so I had a lot of normal, low and high tests - so I was all over the place in testing. If you have symptoms, you have to look for the right doctor.
I did have the 24 hr urine for cortisol testing and it was normal. I had an eye exam last year with dilation and it was normal. I am getting more lab results today. I am in the San Diego area do you know is any neuro-endocrinologist.
mlt60
mlt60
It is possible (they happen in one in five people) but it does not appear that you have had the testing that you need. I see only two pituitary tests listed - IFG-1 and TSH and with your symptomology, it seems like you need ACTH (cortisol) and PRL at least added to the mix.
Cortisol can lower growth hormone. It can mess with thyroid hormones. Wieight, tired, heart, sweating, etc.
Have you seen an eye doc - in particular a neuro-opthomologist? They can check out your eyes and check for tumors via your eyes.
I would get more testing and find the proper docs. Hard. I know. I had Cushing's.
Cortisol can lower growth hormone. It can mess with thyroid hormones. Wieight, tired, heart, sweating, etc.
Have you seen an eye doc - in particular a neuro-opthomologist? They can check out your eyes and check for tumors via your eyes.
I would get more testing and find the proper docs. Hard. I know. I had Cushing's.
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