thryoid drugs and osteoporosis

I am seeing a new doctor who is sort of a mix b/t conventional (he is an MD) and a little bit alternative. He prescribes both conventional medications and compounded.

I went to him about my osteoporosis b/c I don't want to go on medication yet. He did a ton of blood work and it turns out I have hypothyroidism. It is slight but with my symptoms and family history he wants me to start a compounded T3 medication. However, he also told me that my bone density would go down before going up again. This makes me uncomfortable. Is this true? If so, how much of a drop to expect and how long before it improves?

Thanks for any info. This is all new to me and I'm a little overwhelmed. I also believe my adrenal gland is my main issue and not sure treating my thyroid is really the thing to do as I've read that the adrenal fatigue can cause hypothyroidism and the thyroid might not respond to medication if this is the case. This worries be b/c I do not want to harm my bone density for no reason.

If you've read this far, I appreciate it! Thank you for any replies.

Report post

8 replies. Join the discussion

Hey Panda,

I've been hypothyroid for years, I'm 47 now. However, after my 2 boys were born is when I developed it. Then several years after that, I just didn't feel like myself. So I studied up on my condition and found a valid document on TSH not being the only test your doctor should take if they suspect your Synthroid or Levothyroxin isn't doing it for you. I've also been on the desicated (sp?) pig hormone pill, didn't seem to matter. But what I found out in that document that in some instances when you take your thyroid medication, your T4 doesn't break-down into T3, which is ultimately what you want that hormone pill to do! So I insisted they test for TSH, T3 free and T4 free (something about binding or not to proteins).

Well, they did supplement me with a T3 pill along with my Synthoid. That went on for years.

Then, like you, I recognized some symptoms that may be related to my adrenal system. That was a whole new arena there for me to understand. But what I equaled my symptoms to and the level of chronic fatigue and aches and pains, after 8 years they finally diagnosed my with Cushing's Syndrome, which means your adrenal glands are producing way too much Cortisol and it eats your bones and muscle mass. I became very weak.

You mentioned your concern about your bone density. I remember about 3 years before my diagnosis my doctor told me to take calcium pills because my blood test said I was deficient. Never did get a formal bone density test, which can be different than your calcium blood levels....

So, with all that said, I'd definately go by what your body and life-style changes are. You're the only one that really knows your body. I can't stress enough that if your GP and/or Endochronologist don't seem to want to delve into any of your concerns -- LOOK SOMEWHERE ELSE! I was put down, blamed for not being able to diet or exercise, told not to bring in advise from other doctors that he didn't refer me to or from internet articles that i wanted his opinion on. Now if that don't beat all! I put up with that crap for way too long.

My bones were really hurting and I knew I had become more clumsey and had fallen several times, and probably had a few fractures that never show up on x-ray, so I just put up with the pain and treated it with splints or whatever made it feel better. So I went to a Rhuematologist outside my clinic as a self-referal. This woman suspected psoratic arthritus but knew I had more than that going on and in a very professional way told me to find a new GP and a Neruo-Endochronologist ASAP. She gave some web site to find the best and there were only 2 Neuro-Endos in my state of Minnesota, here in Minneapolis and the other south of here at Mayo Clinic. I went here. By this time I was a physical mess. That doctor had me diagnosed just by talking to me and looking at me in 15 minutes. He said he'd have to run a ton of labs and tests/scans to determine where the cause of it was coming from but he didn't waste any time.

I'm not trying to scare you, but even adrenal fatigue is a huge issue with women and their hormones and calcium levels. I'd definately get the best doctors possible and have them run some tests so that you know for sure what you're dealing with.

Thanks for reading my rant, by I'm addiment about having the best health you can. Not having it changes everything in your life.

Best of luck and email me if you want to chat more, etc.

Fezz

Report post

P.S. - I just remembered, when I went to my Rhuematologist, she tested me for vitamin D deficiency. I was like almost at zero! She said that alone could cause pain and deplete your calcium levels because calcium needs good vitamin D to be absorbed well. Just thought you may want to be tested for that too! Good luck.

Report post

Thank you so much Fezz! I have an appt with an endocrinologist next month (the earliest she could see me). I am curious what your treatment for Cushings entailed.

Report post

Dear Panda & Badeye,

Bad - you made a very good point in that people with thyroid issues should be tested to determine if the cause of it was Hashimotos. The doctors just assumed with me. I later developed sever dry eyes. Opthamologist suggested Sjorn's Syndrome! OMG - read up on that and it can be a very serious illness; affecting other internal organs, etc. But I did not have that. My body was experiencing inflamation in a lot of ways; my eyes - causing dryness, my joints causing stiffness and lots of pain, especially walking.

I just think that the whole Endochronology science is very complicated and from my experience, most GP's and OB/GYN's don't really know all that much about symptoms and may often tell you your symptoms are of no value or meaning because they can't find anything wrong. Do you know how many tests my Endo did just to confirm what type of Cushing's I had? I swear I gave a pint of blood for lab tests, multiple urine analysis, various tests to determine cortisol levels at various times of the day and drug suppression tests to determine if my pituitary gland was causing the problem or my adrenal gland!

To answer your question Panda, my treatment for Cushing's was to remove the benign adrenal tumor and the one adrenal gland. The tumor had become very large and had taken over the adrenal glands and produced too much cortisol at all times for a long time. After the surgery, the standard treatment is to be on corticosteriods until the other adrenal gland can start working again on it's own. If that does not happen, you end up having Nelson's Syndrome, which means none of your ardrenal works. The opposite of Cushing's is Addison's Disease. Here, your body does not produce enough adrenal hormones, thus your body does not tolerate stress well, it can be life threatening if your body is stressed a lot from surgery, an accident, or illness and you could go into an adrenal crisis and you should wear a medic alert bracelet saying your adrenal insufficient.

Please post back after your Endo appt. I hope they will listen to you and help you feel better. Adrenal fatigue is a very real condition, but be aware that getting cortisol tests is a tricky business because you have to get your blood levels tested first thing in the morning, when your body normally produces the most cortisol of the day. I begged my old Endo. to give me cortisol tests and they always tested just a few points above the "normal" high level. He repeatidly dismissed the findings and my symptoms, telling me that stress can cause fatigue and if I don't work out like a freak I can get fat easier than other people and maybe I'm not eatting the right diet! I could have clocked that jerk in the head! So hoping you have a better experience! Sorry so long.

Fezz

Report post

I am hypothyroid and have secondary adrenal insufficiency (adrenal fatigue is not a medically recognized illness). (Primary Adrenal Insufficiency is Addison's). I was diagnosed hypothyroid in my mid-20s and have been on Synthorid/Levothyroxin for 40+ years. I have no appreciable loss of bone density. I also take hydrocortisone daily as I am panhypopituiary due to a brain tumor and radiation. Have you had your growth hormone levels checked? If you are deficient, that can affect your bone density. Growth hormone therapy can reverse it. That said, hypothyroid patients are notorious for being Vitamin D deficient. Get your D checked. Your bones depend on it.

Report post

I'm looking for good endos in Minnesota to add to our doctor list. I get referrals looking for Board Certified endos all over the US. We don't have any from MN, and I was asked just last week. Who did you see at Mayo? I'm glad you chucked the first one. Have you been to any of the MAGIC Foundation's adult conventions? We added Cushies about 3 years ago and have doctors come in and present on Cushing's topics. magicfoundation.org is the site. We don't have the program up yet for next June, but check it out after the first of the year. I'm glad you got a good new doctor, although probably weren't happy with the result. I'm hypopanpituitary with secondary adrenal insufficiency now. You had a BLA? Or was tumor on pituitary?

Report post

I had Hashimotos for 30 years before my pituitary tumor. Had no problems. Every one sure is different. All the females in my family tree have Hashimotos (deterioration of thyroid). Some had part or all of gland removed. I've had small tumors come and go. Radiation finished off thyroid operation though, so can't get some readings. I've discovered, if it's not one thing, it will be something else. I wouldn't worry over much. You may want to keep an eye on your Vitamin D levels, which affect bone density too.

Report post

Sajwife, I'm very curious as to why your family members with Hashimotos, some had all or part of their tyroid removed? I was told to never get it removed unless it was cancerous, which is very rare. They said your thyroid gland may be greatly distroyed, but small parts of it may remain and work. I've found through the years my thyroid dosages have changed up and down. You've also had small tumors come and go? How do you know you have them and find them?

Regarding good Endochronologists in MN, I was advised to find a Neuro-Endochronologists, which really makes sense as the endocrin system also affects glands and hormones in your brain. I found only two doctors in the state of MN to meet that criteria. One at Mayo Clinic and the other in St. Louis Park, MN, whom I chose. His name is Dr. C. Rowan DeBold. This doctor was the best. He was open minded, listened, very thorough, didn't make any assumptions and noticed other symptoms just by observing me. He's very patient with my questions and takes the time necessary to explain anything I want further explanation on, but he did a really good job explaining in detail most of my whole ordeal with Cushing's Syndrome. I came to him feeling like I was slowly dieing, and I was. He's been dead-on with every perscription or advise as I continue to heal. He is truly the depiction of the kind of doctor that really cares about the people he helps and is extremely knowledgable in his field. His bedside manner is exemplory. I can't say enough good things about him.

Please tell me more about this MAGIC Foundation. I've never heard of it. I'd love to hear speakers.

To answer your other question, I only had one of my adrenal glands removed. The tumor had become very large for its type and basically took over the gland and destroyed it. My remaining adrenal is STILL showing only very low signs of life. :-( It's been 19 months now since my surgery and this remaining adrenal hasn't produced an adquate amount of cortisol yet. However, I remain hopeful. I believe it went into hybernation for quite some time as I went un-diagnosed for 8 years. My body really took a beating. Someone else in a similar situation advised me that it took them several years to really get back to 'normal'. The medical books and doctors typically tell you recovery in 1-2 years. But I feel like I'm the only living Cushing's survivor that when un-diagnosed for so many years!

Just to throw this out there.... do you or anyone else think I have grounds to take my original Endochronologist to court? I became anti-social, isolated, weak, unable to participate in family life or activities among many other symptoms. It destroyed me emotionally and physically. I feel I un-necessarily lost precious years with my family as my children were growing up. I very angry about that, very much more than the disease itself. I could have dealt with it much better if I had been properly diagnosed. However, this doctor was very money hungary. He always double booked patients, we all waited 45 minutes to see him, I continually complained about symptoms that were affecting my quality of life, I was physically changing dramatically in front of his eyes for years. When I finally left him, I requested a complete set of copied records. When I read through them, he didn't even acknowledge my complaints! When I demanded cortisol tests, he begrudgedly ran them. I always came out above the normal - high levels. I even brought a copy of what a woman with cushing's looks like from a drawing I found in a medical book. It looked just like me. He dismissed it. Do I have a case or do I just suck it in and take the moral high-road? Personally, I don't want him to rip off anyone else or cause them physical and mental harm by lack of proper care and attention. Thanks for anyones thoughts. Sorry so long!

Fezz

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Join the Cushing's Disease Community on Inspire Today!

Community leaders