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Post by rebecca on Feb 19, 2009 21:00:30 GMT -5
Hi, I am a recent hypo pituitary person. No tumor, unknown reason why. I do have lupus and the endo wonders if I had hypophysitis before I got to him. Anyway, I am now on synthroid 150 mcg, cortisone and just started growth hormone. I did not respond quickly to cortisone at 15mg Am/10mg afternoon after a week it was doubled and started kicking in a week into that. (Cortisone binding globulin is normal). Tapered down to 20mg/10mg and have been at 15mg/10mg for the last 2 days. Today I am dizzy and just not quick in the mind. I'm guessing that I need to go back to 20/10 but how do you determine if you are at a good dose s if you are coming down with a cold and don't realize it, etc. Or have you ever heard of GH causing a reaction like this? My endocrinologist I ended up with has been great (at Mayo) First one to not think I was crazy and has been very supportive but I don't feel like I should call with every little question. I also noted that I had started getting impressive pitting edema on the 30/20, much better on the 20/10 but still a bit of swelling. Not really any different in the edema from 20/10 to 15/10. Also, have a question about mornings - I still drag in the early AM - don't start picking up speed until lunch time - any ideas? I'm so glad to find this site and a community of people who understand what it is like. I look foreword to any and all input
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Post by fractal1 on Feb 20, 2009 4:56:51 GMT -5
Hi Rebecca and Welcome I think there are a number of things going on here. Having to increase cortisone to high dosages, dizziness, and mental fogginess are all signs of low aldosterone. It is often assumed that this adrenal hormone isn't affected in people who are hypopit, but this is rarely the case. To assess deficiency, you need to get aldosterone, renin and electrolytes tested (fasting salt 24 hrs). Do you have any recent electrolyte tests (i.e. potassium, sodium)? Growth hormone is the last hormone you should start replacing after adrenal, thyroid and sex hormones are optimized. Growth hormone increases the conversion of T4 to T3 and can result in the depletion of thyroid hormone. So, you need to watch out for hypothyroid symptoms and slowly adjust thyroid replacement. We use armour rather than 'syncrap'. This is because armour also has the active T3 in it, rather than just T4-only, which is a prohormone. How much growth hormone are you taking? How long ago did you start and how quickly did you raise? At some stage I would also consider DHEA replacement. This is a adrenal/sex hormone. Numerous studies have demonstrated its benefits in people with lupus and hypopituitarism. Another bonus is that it reduces growth hormone requirements. Hormones should be replaced slowly and one-by-one. If you don't do this, you're guaranteed to get yourself in a bit of a pickle. The following link has some excellent tips on successful HRT: hormonesupportgroup.proboards.com/index.cgi?action=gotopost&board=adrenals&thread=23&post=52Cheers
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Post by rebecca on Feb 20, 2009 22:47:37 GMT -5
Thanks for your quick reply. I have read the steps to successful HRT and of course I am horrible at rule #1. I have been keeping notes all along of how I am doing, BP, weight etc. My treatment has been somewhat done backwards - no surprise I am sure. My well meaning internist started treating me for hypothyroid due to a low T3 and T4 with a TSH of 3.1. (Which she checked due to my increasing fatigue, weight gain, dry skin, etc) Of course my TSH plummeted to 0.02 and I did not feel any better and continued to get worse. That was when I started researching everything I could find on line. I am a nurse anesthetist and knew that things were not as they should be. I had a flare of my lupus in Aug. (probably due to the failing adrenals) and was treated with prednisone. The miraculous change convinced me immediately that I also had adrenal issues and that the synthroid was making me worse. Believe it or not I was also put on cytomel by a well meaning but uninformed endocrinologist and of course I continued to get worse but at a faster rate. I had to taper off the prednisone before finally getting tested. My insulin stress test showed that my ACTH wasn't responding. I was weak, dizzy, nauseated, losing weight, etc. When I finally got to Mayo clinic the endocrinologist looked at all my records, walked in and said - I think we need to evaluate you for adrenal insufficiency. AMEN! So the round about answer to hormones and for how long, I have been on synthroid since June 2008, stopped the cytomel after I saw the endo at Mayo, and started the cortisone on January 21, 2009. I just started the growth hormone Tues. Feb. 17, 2009. I have been on Estrogen for early menopause for years. FSH and LH are elevated and testosterone was (TFB) - 8 ng/dl ; sex hormone binding globulin 66nmol/L ; Testosterone, free O.5 pg/ml and bio avail - 1.1 ng/dl. Most recent electrolytes are all WNL - Na - 141, K 4.2, Ca 9.6, Phos. 3.9 Total protein 6.1 (low) , Uric acid 1.4 (low) (I still need to research that one) Last TSH sensitive .01, Free thyroxine 1.0, Urine osmolality was 205 with a range of 300-800. Baseline HGH was 0.5 before the insulin stress test with the lowest level being 0.08 at the 90 minute mark. The dose of Neutropen they started me on is 2 units or 0.2mg.
My next appt is at the beginning of March and I will ask about the aldosterone level and renin levels. Much of my salt cravings and excessive urination have resolved since starting on the cortisone. As for vitals signs - my pulse has increased fromit's low of 50 to a range of 68-78. My BP has gone from 90/50 to 115/55. My Am temp. has gone from a low of 95.8F (35.4C) to 97.1F (36.1C). things are definitely improving , and I need to be more patient but now that I am thinking more clearly than I have in a year I am also looking to take charge of my health and optimize my health. I look foreword to any more insights you may have. Thanks, Becky
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Post by rebecca on Feb 20, 2009 22:53:33 GMT -5
Forgot to mention that I am also holding on to water p face looks puffy legs a bit of edema. Had 4+ pitting edema when on 30mg/20mg of cortisone a day. Tried 20/10 today. If I go down to 15/10, should the swelling be less? How many days/weeks should I try a dose of cortisone before deciding to change it up? Thanks,'Becky
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Post by rebecca on Feb 21, 2009 0:25:58 GMT -5
two more things that I forgot. My vision keeps changing. Today it is dead on - everything is as sharp as can be - other days I need up to a +1.75 in reading glasses. Second, nights - i seem to have more eneergy in the evening than at any time during the day and also find it hard to go to sleep. I take the second dose of cortisone around 2 pm. Synthroid AKA syncrap, in the AM. Any thoughts?
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Post by doggy532001 on Feb 21, 2009 6:27:35 GMT -5
Rebecca I wanted to let you know that I have been trying to get my dose of adrenal and thyroid hormone right since 2002 but it looks like the thing that I was missing was Fludrocortisone to make up for insufficient aldosterone as Ruth mentioned. It has made a massive difference but the dose is low at 0.5mg daily. It means I need less steroid than before and has made a massive difference to how I feel.
I have also benefited from Armour taken on waking but with additional 6.25 mcg plain T3 taken at lunchtime and again at 4 pm with 2.5 mg h/c. Its a pretty complicasted regime but it has worked for me at last.
Read up on aldosterone deficiency, there isn't enough written about this, I wish I had known about it before. None of my doctors picked up on it until I mentioned it! Pam
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Post by rebecca on Feb 21, 2009 12:35:09 GMT -5
Pam, Do you live in the U.S? It seems where I am that Armour is taboo. I'm not sure why. Did you have a problem getting this ordered by your MD? I'm researching the aldosterone part. I have had massive fluid shifts so I am sure there is more going on that what has been dx thus far.
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Post by fractal1 on Feb 21, 2009 13:48:01 GMT -5
Hi Becky, Ditto on Pam . Taking larger doses of cortisone can 'resolve' low aldosterone issues because it has mineralocorticoid properties (i.e. aldosterone). Most of us do well on 25 - 30 mg. Aldosterone must be addressed if you need to go higher than that. Like cortisol deficiency, signs and symptoms of low aldosterone are not as apparent when thyroid hormone is low. Growth hormone depletes thyroid hormone by increasing the conversion of T4 to T3. Pitting edema may be because thyroid hormone reserves have been depleted, with hypoT problems further frustrated by GH replacement. I highly recommend that you 'ditch' the GH for the moment (but not cold turkey of course) and focus on stabilizing cortisol and thyroid. Once again, we recommend armour. The thyroid does not produce T4-alone; we should replace it as closely as possible to the real thing. If you find aldosterone symptoms return, you might have to consider florinef. Once cotisol, aldosterone and thyroid are 'optimized', address sex hormones, and finally growth hormone. Let us know how you get on AND make sure you read-up on switching and dosing schedule before starting armour. Cheers
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