Hi my friends,
It’s been a while since I’ve posted about my medicine, and it’s been an interesting year! So I wanted to share what I’ve learned. First, I want to say wow – it’s all a big experiment! And that’s tough sometimes because I want the answer right now. But the only way to learn is try, test, observe and somehow be patient along the way. So my dear friends, keep at it and you will find answers too. Here is my medicine and general update…
Update on Thyroid Medicine
For a year I have been on the Thyroid compound prescription I special order from Collier’s Pharmacy (details below) in Arkansas. I continue to love it. On the new compound medicine, I take 180mgs day which seems like the right dose for me. On Naturthroid, when I raised above 130mgs I had super freaky hyper and hypo symtpoms. Yet on the compound I can take 180mg beautifully. Weird, isn’t it? So I am super happy to report feeling great now though on the compound. We affectionality call it “The Miss Lizzy Compound” — you can ask for it by name at Colliers. Neat.
Update on Hydrocortisone
The other super big change…I weaned off Hydrocortisone! This was a huge step. I started Hydrocortisone three years ago to help with low cortisol and adrenal fatigue. And Hydrocortisone definitely helped me. But I was always a little worried that the Hydrocortisone was causing some weight gain, and perhaps had something to do with hair loss, though I wasn’t totally sure. This summer I decided it was time to try weaning off Hydrocortisone. Here is what I did:
- On STTM Janie felt she had avoided adrenal fatigue because of the high doses of Vitamin C she took daily. So I increased my Vitamin C to 2k mgs a day along with 1k mg Bioflavonoid (per Dr. Wilson’s suggestion). And btw — chewable vitamins really make it much more fun!
- I started the process of decreasing my Hydrocortisone by 2.5mgs a week.
- If I was stressed during the process, I would hold the dose, and then continue when I felt ready. The idea was to take care of my body and not cause shock.
- If had I felt any adrenal fatigue symptoms, I would have stayed on the Hydrocortisone but luckily it seems my adrenals are really well healed now! YAY!!!
It took about 3 months to fully wean off the Hydrocortisone (long time, I know!). And I happy to report, I feel great. It was definitely worth it for me to be on the Hydrocortisone but it was time to try without. It’s been two full months, and so far I seem to be keeping my weight down with greater easily. Over the coming months I will be observing weight gain/loss and hair volume/regrowth to see if the Hydrocortisone might have be related. And of course I will share what I learn!
xxoo
Lizzy
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Here is the info for Collier’s. The pharmacist Rodney at Colliers is SO awesome. He gave us his direct phone extension for ordering the compound (479) 935-4336. Ask for “The Miss Lizzy Compound” and he will hook you up. (A doctor’s prescription is of course needed and he can explain what to do.)
22 comments
Join the conversationJen - November 10, 2011
Just wanted to say I'm glad I found your blog. I've been looking for blogs by hypo/Hashi's people and yours is really the only one I've found that's regularly updated. So, thanks for shaing your story.
Lizzy - November 10, 2011
Hi Jen, I try to update as often as I can (but sometimes fall behind). Hearing from people is good motivation to keep posting. Thanks! xxoo Lizzy
Jillian - November 11, 2011
Hi Lizzy,So great to hear how well you're doing. I just started on 15 mg of HC last week. I've been hypo for years but was only medicated last year. I'm on 4 grains of compounded thyroid medication and despite this dosage, I'm super clinically hypothyroid (my average temp is 95.5!). I found a new doctor who believes in treating adrenals (got thrown under the bus with my old one because he kept telling me to raise my thyroid dose, making my adrenals that much worse in the process, no doubt) and that's why I'm now on HC. I was feeling more energized (though still far from normal) the first few days but it seems my energy has dipped back to where it had been. I don't know what to do! I've been sick for so long and I'm only 29! II'm curious about what you wrote re HC and weight gain: I had always been afraid of steroids because of weight gain but thought the dose I'm on (and presumably you) is physiologic, so I'm kind of confused–the last thing I need is to gain more weight at this point! Do you think I need more HC than 15? My cortisol wasn't super duper low but I think low for me since I'e have an autoimmune disease for 21 years and therefore require more cortisol as it from my own body if that makes sense. It also seems that it would be the only missed link, especially since it seemed to help the first few days. Any help you could offer would be wonderful! Thanks so much and I hope you continue to be well!
Cindy - November 17, 2011
Jillian,15mg seems awfully low to me. I would post your results to the yahoo adrenal group. They will give you a recommendation from there. They are truly experts.Good luck…..I know what you are going through. Take care!Cindy
Lizzy - November 17, 2011
Hi Jillian,I totally agree with Cindy. I would post your lab work on the Yahoo group. With HC, I am not totally sure about weight gain. It seemed to me that I struggled to keep off the 3-5 lbs on HC but its hard to know for sure. I felt so good when I was on HC that it seemed really worth it. Increasing the Vitamin C has been really good, and what helped me get off HC eventually. I wonder if you have an RT3 issue? Anyway, yes post on the Yahoo group, they are fantastic!xxoo Lizzy
Jillian - November 19, 2011
thank you both so much, i really appreciate it! i will post to the yahoo group, per both you're suggestion, and see what they say. The doctor I'm with now is very alternative and extremely open to HC and armour or compounded thyroid but for some reason, prefers blood cortisol tests to saliva for whatever reason. A past doctor I was with did believe in saliva tests and last April, the saliva test I took revealed that i was relatively low. My current results (blood) for cortisol with this newer doctor showed that I'm within normal limits but put me on HC because he feels that what I'm making–even though it's within normal limits–wasn't enough for me. I'm so concerned about taking more HC because I don't want to run into problems where my weight just continues to pile on, definitely not what i want. I am bumpng up to 5 grains of Armour soon and maybe that will help. I had had RT3 about a year ago and was on Cytomel only but that has since cleared, thankfully. I just want this to be over already! It's hard to believe things will get better because they've been bad for so long. And keep getting worse! I really want and need to lose weight, it's so upsetting!
Lizzy - November 19, 2011
Hi Jillian, I totally hear you! It's frustrating and hard. Let us know what they say on the yahoo group. I bet they will have good insights! xxoo!!!
Jillian - November 29, 2011
Just wanted to let you know that I have an appointment with your doctor, Charles Brummer, in a few weeks. I'm really looking forward to it and so hope that he can help me where other doctors haven't been able to. Just a question: regarding the Yahoo Adrenal Group, did most of your help come from Dr. Brummer or from the group? If it was from the group, I should save my money and not go to the doctor (he doesn't accept my insurance) and just refer to the group's advice. I'm hoping you say that Dr Brummer helped you tremendously and he can do the same for me!Did you struggle with puffy eyes and dark circles before you got well?
Lizzy - December 2, 2011
Hi Jillian, Sorry I am just seeing your message now. How wonderful you are seeing Dr. Brummer! He will likely send you to have a panel of labwork to get a really thorough picture, and have you come back for a follow up visit. Yes, Dr. Brummer has helped me tremendously! Though it took us time to figure out and try different things (for example, low iron, low thyroid, low estrogen, vitamins, adrenals, etc..). So please know there is no instant solution, but if you come prepared, he is wonderful at helping find answers. He listens and never makes me feel like "it was in my head". I know its expensive, and that's really tough! But the way I see it is… the "wrong" doctors stole years of my life. The Yahoo Group helped as well, so it was a combination. I had to know what might be going on with me (adrenals, thyroid, etc…) so I could have an informed discussion with Dr. Brummer. Yes, I had puffy eyes and dark circles/shadows! The shadows were adrenal related I believe.I hope that helps!xxooooLizzy
Lizzy - December 2, 2011
Oh and yes the puffy eyes and shadows/dark circles are gone now! My eyes are clear and bright. xxoo
Christina S - January 25, 2012
Thank you so much for the information. I am on 180mg of np thyroid but feel no change in symptoms. I think I might have adrenal issues as well as I have almost every single symptoms. I don't have insurance however so I have to rely on the clinic dr. I have to try something though so I would like to try Lizzy's compound. Do I just use my np thyroid prescription or do I have to have my dr. write one out specifically for a compound? I am also going to try to eat the way you suggest. It's going to be really hard as I LOVE bread products. Is there any way to fix your adrenals yourself if you don't/can't have a cooperative dr? Thanks 🙂
Anna - May 28, 2012
Lizzy, did you experience any symptoms when weaning off hydrocortisone? Did you take any alternatives, such as ashwaganda or liquorice root during the weeks of weaning?
Lizzy - June 15, 2012
Hi Anna, sorry for the slow reply. I increased my Vtiamin C to 2k a day when I weaned off HC, and continue at this dose. xoxo! Lizzy
Ashley g - July 25, 2012
I know this is an old post but my question is related to the compounding posts. I am receiving a compounding formula as well and my compounding pharmacist says that it is impossible to compound with natural desicated. As whatever the T-4 to T-3 ratio a pig comes with is, well, what it comes with. I get compounding because the amount of T-3 present in the armour was too High for me. So I do a 98% T-4 to 2% T-3 ratio. Now so my question is are you getting natural desicated compounding because of the fillers or are you changing you're ratios as well? Also, is my pharmacy wrong in saying that you can't compound natural? Curious your thoughts on this.
Lizzy - August 29, 2012
Hi Ashley, sorry I am way behind in email. I have the compound made because of the filler, not the ratio. I suggest calling Rodney at Collier's Drug (479) 442-6262, he is terrific and will answer your questions. xoxo! Lizzy
Gia - October 18, 2012
I sent you a personal email but wanted to make one quick comment on how thankful I am for finding this website. Will be ordering the compound next week and pray that this will help. Never had a problem with my Armour Thyroid until this year and now all my hypothyroid symptoms are back. And since I have no thryoid at all, its really bad. The exhaustion is always there – and I'm sick of it! Will let you know how it works for me over the next few weeks. Thanks again SO much for sharing!!!
MG - May 18, 2013
Lizzy, How much HC did you start with and how much did you take at your peak? also did you stop thyroid hormone before starting the HC? ThanksMG
janice - June 10, 2013
hi Lizzy! I am looking at your before/after pictures and I am laughing .. I have the SAME PICTURES. Except I am going more toward the BEFORE in the last two years, I can't seem to stop it.I've been suffering from Hashimoto's, Grave's and newly-found adrenal fatigue for 12 years .. started at age 25. My life has been a dead halt. I had radiation last year on my thyroid, so it is no longer functioning. I finally clued in on the adrenal concept last month and started HC, but it hasn't been very smooth for me. Was it completely smooth for you? Did you have ANY side effects or bumps? I started at 20 mg for 3 days, then 22.5 for 2 days (I had so much anxiety & nausea & thought I needed more), then a holistic doctor switched me to Isocort/Licorice Root (25 mg daily). I had a horrific experience 5 days into that, so am back on HC for the last 5 days (15 days total cortisol support). My new holistic doctor started me at 12.5 mg HC daily. Seems low but the experience I had at 25 mg Isocort was so bad, he wanted to slow things down. My saliva cortisol tests were pretty low .. every time of the day. For example, the morning was "15" on a scale of "13-24". The next sample was "3" on a scale of "4-something" (so below range). But this new dose of 12.5 mg seems awfully low, and I am having hideous symptoms 5 days into it, most intense nausea, low blood pressure, lightheaded, intense head pressure. I guess what I am asking is, I've had untreated adrenal fatigue a LONG time so am pretty up a creek. I am afraid to go back up to 25 mg daily because of the horrific night I had, but afraid to not go by the advice of my new doctor, as he has had experience with this. My labs show I SHOULD be at 25 mg HC daily but my mom was ready to take me to ER (those pointless visits where they give you anti-nausea and lots of benzo and you get set back even further). Just thought you could weigh in as I feel I am SO CLOSE to resolving 12 years of indescribable misery by solving adrenal fatigue, but the bumps are almost intolerable since starting. I know I need it, just not sure how and when I can expect it to smooth out, if it will at all. I am on the Yahoo groups, which is interesting advice from experience people, but not really hearing the stories of other who have successfully treated, what their experiences were with starting/stabilizing on HC. SO MUCH ADVICE from so many people. I am looking more for experiences of others with HC .. was it bumpy then became smooth? Every body is certainly different.
Lizzy - June 29, 2013
Hi Janice, I'm so sorry for the delayed reply. I tend to get messages faster on my Facebook group page so please feel free to write me there. Are you taking thyroid medicine as well as the HC?
Lizzy - June 29, 2013
Hi MG,I kept taking natural desiccated thyroid while on the HC. I started at 20mgs a day (10 in the morning, then 7.5 at lunch, 5 in the afternoon, and 2.5 at dinner). I would stress dose up to 30 mgs but I may have done this too much and for too long. In hindsight I should have only been on the HC for a few months before weaning off. But each person is different. I hope that helps! xoxoxo! Lizzy
Jo - February 12, 2014
Hi, I really need some advice. I feel like I'm going crazy. Over the past 5-7 years I have felt awful, TATT, achy, feel like I constantly have a cold, always cold, muggy head & forgetfulness and the worst (for me) weight gain. This gradually got worse & I was diagnosed with IBS as all my bloods were normal. I worked at my GP & found they didn't really take me seriously because I used to type about a lot of conditions daily (many people working in health can create symptoms subconsciously). I knew mine were real, had CTS decompression & treated for IBS which took 2-years to settle down, I completely chanfpged my diet & went back to my normal weight, but still experienced terrible fatigue, low mood, irritability etc. my symptoms started flaring again at the end of 2012. Since then I have tried to change my diet again as I did before but nothing has worked. Since November 2013 things have got worse. I feel awful. I feel like I'm going mad, I don't feel me, feel anxious, want to sleep all the time, don't want to be around anyone, cannot lose any weight at all & am now eating hardly anything as if I eat 3 meals a day I would put on at least half a stone in a week. Have terrible aches & pains, cannot tolerate alcohol at all, after a few glasses of wine I remember nothing, have been to GP again (I no longer work there) & have been sent for bloods, TSH, TFT, CRP, FBC, etc. I know there is something wrong & feel symptoms of hypothyroidism but am worried of bloods come back normal again that it will all be dismissed as IBS again. My skin is dry, my hair thinning & brittle & I feel really really crap. Does anyone have any advice? Bloods will be back Friday (so if not normal hopefully will get treated) but am worried what will happen if they are normal. Apparently I have been borderline before but no-one ever told me this. What should I do next. I really need help as feel like a madwoman & I'm suffering & making my family's life a misery too because I'm so unhappy
Luis Castaño Sánchez - June 20, 2015
Dear Miss Lizzy:
First at all thank you so much for your empowering and helpful blog.
I’m now having an hormonal treatment for my hipotiroidism problem with a doctor in Brussels who has the same (or similar) treatment than Dr. Brunner.
One day, long time ago, I read in your blog about some product who gives you a lot of energy and well-being in few hours. But now I can’t remember the name of this product or find the rigth post.
Maybe do you have an idea about this and could you remember me the right post? I would to ask my doctor for this product in my next consultation.
Thank you so much in advance.
Luis Castaño.