Frequently asked HYPOPITUITARY questions.…and their answers

If you find your­self with a very low TSH lab (the TSH is a pitui­tary hor­mone), yet you have a low free T3, plus hypothy­roid or other cer­tain symp­toms, you may have hypo­pi­tui­ta­rism. Here are the most fre­quently asked ques­tions con­cer­ning this con­di­tion, crea­ted by Chris, a hypo­pi­tui­tary patient who has wor­ked with other hypo­pi­tui­tary patients for seve­ral years. Please note these are quick gene­ral ans­wers so it’s recom­men­ded you do your own research to learn more. You can also join Chris’s Hypo­pi­tui­tary Sup­port Group on Yahoo. It is clo­sed to pos­ting, but you can join to access the great deal of infor­ma­tion it con­tains, inc­lu­ding over 500 links and 100 files.

1) What is hypo­pi­tui­ta­rism?
2) What are symp­toms of hypo­pi­tui­ta­rism?
3) What cau­ses hypo­pi­tui­ta­rism?
4) Is adre­nal and/or thy­roid treat­ment dif­fe­rent if I am hypo­pi­tui­tary?
5) What labs will detect hypo­pi­tui­ta­rism?
6) If I can’t afford all those labs, can you tell just from TSH? DHEA?
7) Can you detect hypo­pi­tui­ta­rism from saliva cor­ti­sol labs?
8 ) I’m already on HC, can I test cor­ti­sol or ACTH levels?
9) Is there any test for hypo­pi­tui­ta­rism once I’m already on HC?
10) If one pitui­tary hor­mone is low, does that mean all of them are?
11) My Dr or Insu­rance won’t approve further tests — what should I do?
12) Should I start trea­ting the sex hor­mo­nes right away?
13) Is hypo­pi­tui­ta­rism cura­ble?
14) My doc­tor says my cor­ti­sol dou­bled during the ACTH sti­mu­la­tion test, so I am ok-is he right?
15) Could I have a pitui­tary tumor? Should I get an MRI? Is it gonna grow? Will I need an ope­ra­tion?
16) Are there sha­des of Gray on this? Does someone get ‘sort-of’ hypo-pit, then then next guy’s labs even more so, then finally one sets off the buz­zer and gets a defi­ni­tive label of Hypo-Pit?

1) What is hypo­pi­tui­ta­rism? Hypo­pi­tui­tary is the pitui­tary gland func­tio­ning below where it needs to be, and one or more hor­mo­nes can be invol­ved. The pitui­tary is a pea sized gland loca­ted at the base of the brain and it runs the adre­nals, thy­roid, and sex hor­mo­nes. It also pro­du­ces growth hor­mone and sto­res oxy­to­cin and vaso­pres­sin, both of which are made in the hypotha­la­mus. If the pitui­tary doesn’t put out enough TSH, thy­roid hor­mone pro­duc­tion can dec­rease. It the pitui­tary doesn’t pro­duce enough ACTH, cor­ti­sol (and DHEA) can dec­rease.

2) What are the symp­toms of hypo­pi­tui­ta­rism? Because the pitui­tary may not be sen­ding ade­quate levels of TSH and or ACTH, you could feel fati­gue, weak­ness, have low blood pres­sure, feel col­der than nor­mal, have a dec­rease in your appe­tite, hea­daches, and depres­sion. Symp­toms of hypo­pit (con­cer­ning low TSH, low ACTH, low LH and FSH) are the same as if thyroid-adrenals-gonads are the cause. In most cases you can’t tell by symp­toms if you may be hypo­pi­tui­tary or not. If you aren’t get­ting enough ACTH, you could have symp­toms of weight loss and nau­sea, plus the fati­gue, low blood pres­sure, weak­ness, and depres­sion. Because of a defi­ciency of TSH and LH, women could lose their periods, or have pro­blems con­cei­ving. Men could have a dec­rea­sed libido, erec­tile dys­func­tion, and loss of facial hair. If hypo­pi­tui­tary occurs in childhood, the result can be a short sta­ture. Thirst and inc­rea­sed need to uri­nate can occur is you have an ADH defi­ciency. (Note: a large body of hypothy­roid patients have a “low nor­mal” TSH without hypo­pi­tui­ta­rism. Why? Because the man-made TSH lab is often slow to reveal the hypothy­roid state. Those with hypo­pi­tui­ta­rism will often have a TSH at 0.8 and lower for women, and 1.8 and lower for men, with accom­pan­ying hypo symp­toms. See #5 and 6 below.)

3) What cau­ses hypo­pi­tui­ta­rism? A com­mon cause of hypo­pi­tui­ta­rism is head injury. Even a see­mingly mild bump to the head can damage the pitui­tary. A Pitui­tary tumor can also cause hypo­pi­tui­tary, though perhaps less than 3 per­cent have this as a cause. Sheehan’s syn­drome is another cause, which is any type of blood loss, and where the pitui­tary at least par­tially dies from the lack of blood. Blood loss from child­birth, or an injury can result in Sheehan’s syn­drome. Other cau­ses can be radia­tion, anti­body attack, and envi­ron­men­tal. In most cases, it can not be known for sure what the cause is.

4) Is adre­nal and/or thy­roid treat­ment dif­fe­rent if I am hypo­pi­tui­tary? In trea­ting the adre­nals and thy­roid cau­sed by low ACTH (secon­dary AI) and low TSH (secon­dary hypothy­roid), treat­ment is the same as it is for pri­mary Adre­nal Insuf­fi­ciency and pri­mary hypothy­roid. Sex hor­mone treat­ment can be dif­fe­rent with the use of HCG (almost iden­ti­cal to LH) in secon­da­ries hypo­go­na­dism (low LH and FSH pro­duc­tion in the pitui­tary which will cause low sex hor­mo­nes in men and women), whe­reas pri­mary hypo­go­na­dism invol­ves the gonads being the cause of low sex hor­mo­nes, LH and FSH will go up. The treat­ment for pri­mary hypo­go­na­dism is the use of tes­tos­te­rone (in men, some­ti­mes along with estro­gen bloc­ker) and estro­gen, pro­ges­te­rone and even tes­tos­te­rone in women. Some men with pri­mary hypo­go­na­dism also use HCG, but is rarely used in women.

5) What labs will detect hypo­pi­tui­ta­rism?
–low TSH (below 1.8 for men, below 0.8 for women)
–low ACTH (below 30 for am. Is pos­si­ble to be secon­dary with ACTH as high as low 40’s)
–ACTH sti­mu­la­tion or ITT that dou­bles cor­ti­sol from a low base value.
–ITT for GH stim
–low GHRH
–low TRH
–low vaso­pres­sin (hypotha­la­mic hor­mone which is sto­red in the pitui­tary)
–low renin and low aldos­te­rone
–very low or below range prolactin-usually this test is inconc­lu­sive for deter­ming if other low pitui­tary hor­mo­nes could be pre­sent.
–low oxy­to­cin (rarely tes­ted, is a hypotha­la­mic hor­mone which is
sto­red and relea­sed from the pitui­tary)
–alpha MSH (rarely tes­ted, is a bypro­duct of ACTH)

6) If I can’t afford all those labs, can you tell just from TSH? DHEA? If not on any thy­roid treat­ment, I go by the TSH: less than .8 for women, less than 1.8 for men for deter­mi­ning secon­dary hypothy­roid. I use 1.3 and above for women and 2.2 and above for men to deter­mine pri­mary hypo. In bet­ween .8 and 1.3 for women and 1.8 and 2.2 for men is less cer­tain to whether secon­dary or not. A serum TRH and TRH STIM can help if you fall in that grey area. DHEA, if in the lower half of the range usually, but not always, indi­ca­tes pos­si­ble secon­dary adre­nal insuf­fi­ciency. Serum ACTH and ACTH STIM are the best tests for deter­mi­ning if secon­dary. If one has already star­ted ste­roid without pro­per tes­ting, the next best test for deter­mi­ning secon­dary AI is the renin test.

7) Can you detect hypo­pi­tui­ta­rism from saliva cor­ti­sol labs? No, because the test only shows what cor­ti­sol levels are, not what ACTH levels are doing. There is no saliva lab for ACTH as far as I know.

8 ) I’m already on hydro­cor­ti­sone (HC), can I test cor­ti­sol and or ACTH levels? No, once ste­roid is star­ted, those tests are not relia­ble. In every case I’ve seen where a doc­tor uses these tests for dosing a patient’s cor­ti­sol repla­ce­ment, the patient was left under­trea­ted. ACTH will go to pretty much zero in pro­per cor­ti­sol dosing.

9) Is there any test for hypo­pi­tui­ta­rism once star­ted on HC? For detec­ting secon­dary (low ACTH) AI when pro­per tes­ting hasn’t been done (serum acth, DHEA-S, acth sti­mu­la­tion test), the renin test (with aldos­te­rone) is the next best thing and is highly relia­ble if the test is done right (fast salt for 24 hours). Renin is low 99% of the time in secondaries.

10) If one pitui­tary hor­mone is low, does that mean all of them are? In more than 99% of cases of hypo­pi­tui­tary, 2 to 3 pitui­tary hor­mo­nes will be defi­cient. Keep in mind inter­pre­ting tests is sub­jec­tive. One doc like an osteo­path (US) may see pro­blems, an endoc­ri­no­lo­gist will pro­bably will say your tests are ok. When all pitui­tary hor­mo­nes are defi­cient to mis­sing, this is called panhy­po­pi­tui­ta­rism. True panhy­po­pi­tui­ta­rism is fairly rare. Some defi­ni­tions say not all pitui­tary hor­mo­nes have to be defi­cient, but most. I go by the the strict defi­ni­tion — all pitui­tary hor­mo­nes being defi­cient or absent in the ante­rior pitui­tary. I’ve seen one case of real panhypopituitarism.

11) My Dr or Insu­rance won’t approve further tests — what should I do? I recom­mend you first try an osteo­path (DO) or holis­tic type of doc­tor even if you have to pay it all your­self. In the US, osteo­paths are best for dea­ling with pitui­tary pro­blems, but the rest of the world, osteo­paths are a dif­fe­rent type of doc and usually can’t help.

12) Should I start trea­ting the sex hor­mo­nes right away? Not until your adre­nals and thy­roid have been pro­perly trea­ted. The order of trea­ting hor­mo­nes are cor­ti­sol, aldos­te­rone, *vaso­pres­sin (if nee­ded but uncom­mon, always trea­ted after aldos­te­rone) *DHEA (if nee­ded, but not if sex hor­mo­nes will need to be trea­ted since DHEA breaks down into sex hor­mo­nes and you can’t con­trol how that will hap­pen), then sex hor­mo­nes, then Growth hor­mone. Low pro­lac­tin is not trea­ted, but some­ti­mes pro­lac­tin pro­du­cing tumor (pro­lac­ti­noma) can be pre­sent in hypo­pit and a drug like Dos­ti­nex is used to lower pro­lac­tin. Know that
some­ti­mes low thy­roid can raise pro­lac­tin. Trea­ting thy­roid may lower pro­lac­tin.

13) Is hypo­pi­tui­ta­rism cura­ble? There is no cure for hypo­pi­tui­ta­rism.

14) My doc­tor says my cor­ti­sol dou­bled during the ACTH sti­mu­la­tion test, so I am ok-is he right? Most peo­ple with pitui­tary cau­sed adre­nal insuf­fi­ciency, aka secon­dary adre­nal insuf­fi­ciency, do dou­ble on that test, but from a low base cor­ti­sol value. If your STIM star­ted below mid 20’s for women and below upper 20s for men, but dou­bled or more, then that sug­gests pos­si­ble secon­dary adre­nal insuf­fi­ciency. A serum ACTH must be tes­ted just before the STIM is star­ted. From what I’ve seen, serum ACTH can be as high as lower 40’s for secon­dary AI, but most are below 30. Keep in mind the ran­ges today are even more fla­wed than they were 2+ years ago when 99% of labs used a range of 10 – 60. In my opi­nion a good range for ACTH would be 40 – 55. See here for a greatly detai­led expla­na­tion of how to inter­pret your ACTH STIM test.

15) Could I have a pitui­tary tumor? Should I get an MRI? Is it gonna grow? Will I need an ope­ra­tion? Most peo­ple with hypo­pi­tui­tary are not in that con­di­tion because of a pitui­tary tumor. I esti­mate that less than 5% of those with hypo­pi­tui­ta­rism are diag­no­sed with a pit tumor, but stu­dies have shown over 20% of cada­vers have some degree of pitui­tary tumor pre­sent. In my opi­nion anyone who’s tests show even one low pitui­tary hor­mone should get an MRI (make sure is done with and without con­trast). You can’t be sure until you have one. If your doc wants you to have a CAT scan ins­tead, then you know you are seeing the wrong doc­tor. In cases of pit tumor is pre­sent I recom­mend one see an endo who spe­cia­li­zes in pitui­tary tumors. In half the cases, pit tumors don’t grow to large and will stop gro­wing. Any pitui­tary tumor should be moni­to­red by MRI at least once a year. In the vast majo­rity of cases, an ope­ra­tion is not neces­sary, but is neces­sary when the tumor pushes on the optic nerve or pushes against the hypotha­la­mus or sinus cavity. Pitui­tary tumors usually cause dec­rease in some but usually not all pitui­tary hor­mo­nes, but pro­lac­tin sec­re­ting tumors (pro­lac­tin excess aka pro­lac­ti­no­mas) are not uncom­mon and can cause dis­rup­tion of the hor­mo­nes of the pitui­tary ren­de­ring hypo­pi­tui­tary. Tumors can also cause excess TSH (cau­sing HYPERthy­roid), excess GH and even excess gona­do­tro­pins (LH and FSH), but all of these bor­der on rare. If you are diag­no­sed with a pitui­tary tumor, you need to check out www.Pituitarynetwork.org

16) Are there sha­des of Gray on this? Does someone get “sort-of hypo-pit”, then next guy’s labs even more so, then finally one sets off the buz­zer and gets a defi­ni­tive label of Hypo-Pit? There are var­ying degrees of hypo­pi­tui­ta­rism which I see every­day. Most peo­ple who have it, don’t get bad enough to have to figure this out and go to their gra­ves not kno­wing. Most will have tests that are in range. I’ve seen everything from “I sus­pect slight hypo­pit for you but not bad enough to treat” (symp­toms sup­port, but tests sho­wed a bit off) to a woman in Den­mark who almost died from hypopit.

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