My very Sr Endo Dr is now stumped....and I feel miserable...
I am a 42 yr old female with endocrine issues since 2009. The first symptoms were exhaustion and rapid weight gain.
It weirdly started happening about 4 - 6 months after I had 2 surgeries for colon bleeding that brought my blood levels down dangerously low for about 6 -9 months previously in late 2008/early 2009. After recoverying from surgery and was able to eat and get around, I started to gain weight rapidly starting in May 2009 (my last surgery was Feb 2009).
I thought it was related to the blood loss...and so went to get tests. They did a CBC and TSH and Cortisol blood test. The anemia and hemacrit was moving up as expected and was now in the low levels of normal. My Iron Sat was very low at 8, but the Dr said that would rise with time.
The Cortisol were low at 5.5 for AM sample and the TSH was 0.6......he said I did not have a thyroid issue
Then a week later I went to an endo and I had more bloodwork that showed the T4 at .5. She sent me a blue card and told me I was fine. I kept getting exhausted and the weight was piling on at about 12lb a month and my muscles in my neck ached terribly.
I went to see another Dr in 9/2009 who said my T4 were too low and my Cortisol was too low. He put me on 100mg of Synthoid and then also Pretnisone (I cannot remember dosage) for three weeks and 5g of D Ribose twice a day. I started to feel a little better, had more energy and was able to successfully start life again. However I lost 5 pounds of the 30 I gained and then stalled (at a 29 BMI no less).
I started feeling lousy agin with exhaustion and weight gain in May 2010 and went back in June 2010. My thyroid was working well with a 0.12 TSH low, T4 0.9, and T3 3.1 but I felt bad and was struggling to lose weight. He check Cortisol and this one was 23.6 for AM so it was high (range of 6.2 - 19). He also did Chol 202 high, HDL 24 low, LDL-P high 1799, HDL-P 27.4 Low, Trig 148 High.
He said I was nearly insulin resistant, told me to change to low carb diet, 20g a day max, and he switched my thyroid medication to Armour 120mg 1X per day.
I felt better in two weeks, lost 16 lbs and then stalled (at a 29 BMI again) but felt a little better.
Moved over the summer and went to a new Dr.right after Christmas. I had started feeling drained and gaining weight again in 11/2010. In Jan 13 2011, the Dr put me on Phetermine fr one month. I ran out of Armour on Feb 6th and waited to see him on the 11th again to get more. I did not feel better nor did I lose any weight even on a strict low carb diet and Phetermine. He took bloodwork at my TSH was 0.004 Low and T4 .87 boarderline low and T3 3.4 normal Cortisol AM 6.2 Low (7 - 19 range). He did not know what to think and referred me to an endo in my area. He did not prescribe anymore thyroid as he wanted the endo to look at it first.
I went to the endo a week later. He did not prescribe any medication to do testing. He tested thyroid TSH 0.12 Low, T4 0.84 boardline low T4 3.4 normal. He also tested cortisol which was at 6.0. He went on feel a lump in my thyroid and then ordered a 24 hr cortisol urine which came out at 15 (range 0 - 50...but he said 15 is pretty low). He tested Prolactin 12.4, Estradol (I do not know the number but he said normal), IGF-1 (he said normal), and ACTH which was the bottom of the normal scale so boarderline. I had a thyroid ultasound and they found 5 lumps...2 larger and 3 smaller. The T4 came back at 0.5 and TSH rose to 1.66 but still both too low.
He is stumped. He said that the TSH is suppressed, the T4 is slightly low, the T3 is producing well, the ACTH is slightly low, the Cortisol is low which may point to a partial Pituitary deficiency as the other hormones from the pituitary were fine. He is thinking of doing a radioactive scan of the thyroid and a ACTH stim test. He said I am very unusual to what I should have. He does not think I have a tumor as I would have other low levels of hormones other than TSH and ACTH.
Meanwhile I am on no medication, I am sleeping a lot, I have gained 10 lbs since 2/11/2011, my blood pressure has gone up to 150/105 and 140/90-95 at my appointments, and I am retaining water. I am avoiding travel for work and working exclusively from home...I am exhausted and my neck aches again. He is trying to help me but can't figure out a central cause.
Has anyone even heard of this or has this happened to someone else?
Ah... the doc put you on long acting steroid on the basis of one test at one time? He needs to be reported.
TSH is suppressed normally by HIGH cortisol. The cortisol can be low in the morning due to loss of diurnal rhythm - so a test at one time of day would not show the loss of diurnal rhythm. Nor did the doc do a stim test to show that the adrenals were not working (which is what a doctor SHOULD do if the adrenals are not working). You said your ACTH was low - but was it done properly - chilled EDTA tube, spun immediately, frozen promptly (did the lab tech put the tube in the bin? if so, the result was low due to handling, not you).
Your thyroid testing is also dismal - TSH, T4 ? - no T3 no frees, no antibodies... did he do an FNA since you have so many nodules?
I would do to another endo - take the testing you have is dismal and this guy is just shooting in the dark.
ACTH is easily botched - so that test can be done wrong. The problem is that you gained weight - and that points more to high cortisol, not low - and to add steroids to that mix is to add fuel to a fire. High blood pressure also is high, not low cortisol. This is not 100% but few people I know with low cortisol have high blood pressure. Only those on replacement are heavy.
You need a stimulation test - but you really need more testing. Even if the doc suspects low cortisol he should do aldosterone, renin, dhea sulfate, aldrenal antibodies to see what is going on. I would also ask for more pituitary testing as well to be sure.
He called last night, so I didn't get the note in time to ask...but will next week.
So he thinks I have Pituitary Insuffiency maybe....he thinks my adrenal probably works right, but is not being triggered by the ACTH correctly, as the TSH not triggering the thryoid....so that is why my T4 remains low. He says the thyroid test and the ACTH stim will tell him if the issues are the glands themselves or the pituitary is partially dysfunction maybe from the bad colon hemmoraging years ago and maybe depriving the pituitary of blood.
ACTH triggers cortisol - that is the loop. TSH triggers the thyroid etc. However usually in primary adrenal issues, ACTH is high and cortisol is low as the pituitary senses the cortisol/adrenal is not working and bombards the adrenal to try to make it work. Same with TSH.
I have heard of childbirth damaging the pit (it is called Sheehan's syndrome) and trauma etc. but now if he suspects the colon, then he needs to send you on to a pituitary specialist.
BTW - "pituitary insufficiency" does not exist - it is called hypopituitary or panhypopituitary. I am panhypopit.
I was diagnosed with a pituitary tumour 0.8mm in Dec '12, my prolactin was high and cortisol low, I have had a crippling headache almost constantly for 8 months, periphial vision problems, mood changes, exhaustion, no energy, insomnia and unrestful sleep, general pain, neck, shoulders, skull, arms, hands, chest all have soreness to the point that I have to stay in bed, I also suffer from chronic ear pain and acute vertigo, have reached the end of the road with ENT, after a botched journey in terms of mistakes and mishaps caused by poor handling of my case..saw Endocrinologist 2 weeks ago and she said that doing nothing is the best option! She said my symptoms are unconnected, I won't accept this as I feel the headaches (horrendous) and vision problems are very much to do with it. She was largely unsympathetic and I feel very doubtful of her recommendations and have no confidence in her. My ENT specialist has been very sympathetic and has referred me to rheumatology and to see a pain specialist. It is thought by my gp that the underlying condition is fybromyalgia, I tick every box for it, it has been mentioned a few times. All the bloods that were done at the request of the endocrinologist three weeks ago hadn't even been sent to my gp, I had to physically go and collect them and drive them to my gp's practice!! The endocrinologist wanted to put me on thyroxin, my thyroid was very slightly underactive but never has been before, my doctor wants to wait. I just wondered if anyone else has had such confusion in dealing with this? I feel like no-one is taking me seriously and a lot of time has been wasted :-(
Get a MRI, I had a similar problem. I was told it could be a pituitary tumor but probably not. One day i had a extreme headache and vision loss. Went to the hospital and I had a Very large pituitary tumor that had a stroke. I had emergency surgery 1 month ago my vision is back to normal. This is not to scare you, but it's better to know you have it before you get to the point where it's a medical emergency. It's a highly successful surgery when done by a hospital/surgeon that specializes in it. I went to UCLA ranked 5th in the world. Your pituitary gland controls all your hormones and your symptoms could indicate a tumor.
Oh ya I also had to stay in the hospital longer because I was retaining water, my sodium was extremely low. Is your pee clear?, yellow? PLease get your sodium levels checked I'm not a doctor but it sounds like you may have a pituitary tumor.
With elevated prolactin, your endo should not be watching, but testing. Find another. You have symptoms - don't wait but get more testing and try to find someone to get you an MRI. My prolactin was barely elevated and I still had a prolactinoma. It can still be caused by thyroid and tons of over things, but they have to find the reason, not just *wait* - quality of life means something.
DI = diabetes insipides where your ADH (anti-diuretic hormone or vasopressen) is not regulated and you tend to get very thirsty and pee a lot. It can be temporary or permanent after surgery.
SIADH is "Syndrome Of Inappropriate Antidiuretic Hormone" and can lead to really wonked out sodium very quickly, so one has to act quickly. SIADH is more serious than DI - but both have to be controlled.
So with low sodium and clear pee - it sounded like your electrolytes were being washed out but one or the other. I have another disorder entirely and I have to be careful that my sodium does not drop as that can be serious.
Before and immediately after surgery my sodium was low. Now my sodium levels are fine. I had my sodium levels checked twice since leaving the hospital and Today I'm going to California to see my Surgeon and hormone doctor for a checkup. I should get the sodium results back then. I think it will be fine considering I'm paying attention to what I take in and what comes out. Me urine is the straw color like it's supposed to be. So hopefully it's ok. I really am hoping I can get off of the thyroid and steroid medication I'm on. I hope I don't have to take it for life and If I do it's out of my hands. I feel good, the on'y real problem I'm having is facial flushing and sweating (maybe a hot flash?) I know my estrogen and progesterone before surgery was so low the blood work couldn't pick it up and because I just had surgery they will not give me medicine for that because fear of a blod clot. I'm sure later on they will put me on something to regulate my estrogen and projection. Keeping my fingers crossed. I live in Vegas and I'm heading out now to California appointments tomorrow I'll be back Tuesday night.
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