Wish I could say I was doing well but I can't. Get fatigued easily, feel week at times, my large muscles - mainly thigh muscles break down...like when I climb stairs or walk for 10 min. It's really similar to before surgery except then I was exhausted all the time. Now I'll hit a day where that happens too. NOT good. Just started up on calcium again as Kelly ( Dr. Norman's clinic ) and I have been emailing back and forth.
How are things with you?
How are things with you?
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Hi texgranny and Kodger99 and anyone else who is interested. I had MIRP on the 21st with Dr Larian in Los Angeles. I can't say enough about how nice Dr Larian is and how good Cedars Sinai Hospital is. I have had no problems at all and would do it again in a minute.
I never had high calcium and scans didn't show anything. If Dr Larian hadn't offered to talk with my endocrinologist I would never have gotten to surgery. We all knew that I had a very large thyroid nodule; it had been biopsied and was not causing a problem at this point. He said that as long as I was having surgery, the nodule and the left thyroid lobe need to come out before they did cause problems. Voila! the adenoma was hiding behind the nodule and would probably never have showed on a scan. I knew it wouldn't be a 20 min surgery because of all the thyroid stuff but was surprised when I woke up and found that it had taken about 3 hrs! The only pain medication I needed was Tylenol in recovery. The ice pack felt good a couple of times but I could have done without it. He wanted me to stay in the area for a few days and we even stayed a couple of extra days to visit friends and sightsee.
Kodger99 - why do they think you are still feeling so bad? I'm sorry to hear that things are still tough. mass
I never had high calcium and scans didn't show anything. If Dr Larian hadn't offered to talk with my endocrinologist I would never have gotten to surgery. We all knew that I had a very large thyroid nodule; it had been biopsied and was not causing a problem at this point. He said that as long as I was having surgery, the nodule and the left thyroid lobe need to come out before they did cause problems. Voila! the adenoma was hiding behind the nodule and would probably never have showed on a scan. I knew it wouldn't be a 20 min surgery because of all the thyroid stuff but was surprised when I woke up and found that it had taken about 3 hrs! The only pain medication I needed was Tylenol in recovery. The ice pack felt good a couple of times but I could have done without it. He wanted me to stay in the area for a few days and we even stayed a couple of extra days to visit friends and sightsee.
Kodger99 - why do they think you are still feeling so bad? I'm sorry to hear that things are still tough. mass
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I wished I knew! New cocktail consists of multi-vitamin + 2 Citracal + 2000 iu Vit D.
Current blood work shows normal pth, normal calcium, low phosphates (hypophosphatemia) and low Vit D.
Clueless!
Have an apt with a neurologist March 8th
Current blood work shows normal pth, normal calcium, low phosphates (hypophosphatemia) and low Vit D.
Clueless!
Have an apt with a neurologist March 8th
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Hi Kodger99 and mass. Sounds like good news and bad news. mass I am so glad your surgery went well. By any chance are you now having to take thyroid meds? Kodger99, seems like that is a lot of Vit D for it still to be low. I have had a set back too..been having anxiety attacks. Never before. Dr put me on meds and they just about did me in...lol..I just wonder if Vit D has anything to do with depression and anxiety. Mine is low, but Dr Norman didn't want me to take supplement. I am taking calcium with D and multi vitamin. I don't get in the sun much as I have a reaction to the sun when I do. I have had some problems with muscle cramps and I have read this could be because of the hypothyroidism I now have. I am not feeling as well as I would like and I am sure the weight gain has a lot to do with that too.
Good luck to you Kodger on seeing the new Dr and mass I hope your recovery goes well. Sounds like you had a good surgeon. Stay in touch..txg
Good luck to you Kodger on seeing the new Dr and mass I hope your recovery goes well. Sounds like you had a good surgeon. Stay in touch..txg
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You all are in serious need of iodine. You felt crappy before the surgery because you were deficient and now after the surgery you are still deficient and you thryoid is recovering from an all out attack. You wanna feel better? get off the pharma drugs and start giving your body what is NEEDS.
You can find more info at theiodineproject.com
Hope you all are feeling better soon, I know I did.
You can find more info at theiodineproject.com
Hope you all are feeling better soon, I know I did.
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Texgranny - Dr Larian is a great surgeon and I could write a book about how nice he is. I would recommend him to anyone. I have been taking 50 mgc of Synthroid for about a year and the tests have been exactly where they should be. When I have follow up blood tests in a few weeks they will know if the Synthroid needs to be adjusted. I haven't felt any effects at all that I could attribute to the thyroid part of the surgery. I'm hoping that someday I'll get to the point that I don't need to continue with the endocrinologist then I know that the osteopath who referred me to her would let me take Armour instead.
I'm so sorry that you are having such a tough time. The really frustrating thing is that nobody agrees with anybody else about all this stuff. There's so much that they just don't know. I do hope that you can find someone who can help. ---mass
I'm so sorry that you are having such a tough time. The really frustrating thing is that nobody agrees with anybody else about all this stuff. There's so much that they just don't know. I do hope that you can find someone who can help. ---mass
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mass: Thanks for the reply. What is Armour? Are you hypo or hyperthyroid? txg
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texgranny - I was just slightly hypothyroid and we'll just have to see what happens with the surgery. Armour is thyroid hormone from pig thyroid. Not many MDs will use it now that they have developed the synthetic hormone. All thyroid hormone supplement needs to be monitored closely as too much hormone decalcifies the bones. Aagh! just like too much PTH.
The surgeon called today and said that the pathology report shopwed two small cancers in the thyroid nodule that was removed. It was biopsied a year ago and nothing showed up. It was a surprise but anyway it's all out and we didn't even know about it. I'm just glad tht I didn't let my endocrinologist keep monitoring the parathyroid situation as it would probably have kept growing while we were waiting for high calcium or positive scan.
Are you feeling better, I hope. - mass
The surgeon called today and said that the pathology report shopwed two small cancers in the thyroid nodule that was removed. It was biopsied a year ago and nothing showed up. It was a surprise but anyway it's all out and we didn't even know about it. I'm just glad tht I didn't let my endocrinologist keep monitoring the parathyroid situation as it would probably have kept growing while we were waiting for high calcium or positive scan.
Are you feeling better, I hope. - mass
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mass: Thanks for the info. I too had a nodule removed when I had my surgery. I never had an abnormal thyroid lab until 5 mos ago. My concern is that the thyroid was "disturbed" in surgery and now I am hypo.
Will you require further treatment for thyroid?
It is so hard to believe you never had high calcium? That is what made me so sick. My PTH was always on the very low to normal. That is why this disease is so hard to diagnose.
My best wishes for you to have a speedy recovery. Your case is interesting so please stay in touch....txg
Will you require further treatment for thyroid?
It is so hard to believe you never had high calcium? That is what made me so sick. My PTH was always on the very low to normal. That is why this disease is so hard to diagnose.
My best wishes for you to have a speedy recovery. Your case is interesting so please stay in touch....txg
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texgranny - I'm told that most people have thyroid nodules and most of them do not cause a problem. A few cause hormone imbalance and a few are cancerous. I don't know about disturbing the thyroid, I've never heard of that being a problem. Lots of people are a little hypo. Keep watching it. I've known people who took Synthroid for years then a different doctor decided that they didn't need it. I don't like medications but have to go along with it for now.
In a couple of weeks it will be time for followup blood tests then we'll see if the Synthroid needs to be adjusted. As far as the cancer goes - Dr Larian said that many doctors would immediately remove the rest of my thyroid but he didn't think that was the right course for me. We'll do an ultrasound in 6 months and then periodically to watch for new nodules or cancerous growths.
I had calcium of 9.9 once but all the others were 9.4-9.6. Two ionized calciums were normal and two 24 hr urine were normal. We think that is why my symptoms were milder than most people - I felt crummy so I can't imagine what others feel like. PTH ran 69-128. We don't know why the disease didn't progress as rapidly as most. The adenoma was good sized and likley had been there for quite a while.
I wish you well.
mass
In a couple of weeks it will be time for followup blood tests then we'll see if the Synthroid needs to be adjusted. As far as the cancer goes - Dr Larian said that many doctors would immediately remove the rest of my thyroid but he didn't think that was the right course for me. We'll do an ultrasound in 6 months and then periodically to watch for new nodules or cancerous growths.
I had calcium of 9.9 once but all the others were 9.4-9.6. Two ionized calciums were normal and two 24 hr urine were normal. We think that is why my symptoms were milder than most people - I felt crummy so I can't imagine what others feel like. PTH ran 69-128. We don't know why the disease didn't progress as rapidly as most. The adenoma was good sized and likley had been there for quite a while.
I wish you well.
mass
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Texgranny,
In your post you stated that Dr. Noman didn't want you to take any Vit D supplement. Is that right? Did he know your Vit D was low? Did he say why you shouldn't? I was taking 2 citracal + 2 vit D along with multi-vitamin and I had 3 bruttle days of muscular symptoms. I dropped to 1 Citracal and am wondering about the Vit D. Kelly said to take 2 calcium and multi Vitamin but nothing about Vit D. I'm just doing what my local doctor told me to do because I have insufficient Vit D levels.
In your post you stated that Dr. Noman didn't want you to take any Vit D supplement. Is that right? Did he know your Vit D was low? Did he say why you shouldn't? I was taking 2 citracal + 2 vit D along with multi-vitamin and I had 3 bruttle days of muscular symptoms. I dropped to 1 Citracal and am wondering about the Vit D. Kelly said to take 2 calcium and multi Vitamin but nothing about Vit D. I'm just doing what my local doctor told me to do because I have insufficient Vit D levels.
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Texgranny the Vit D question in the last post is from Kodger99.
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Kodger99: If my memory serves me right my Vit D was low on my first lab work 5 weeks post surgery. My pcp wanted me to take Vit D and I emailed Kelly (nurse) and Dr Norman said to continue with the calcium with Vit D and no extra D supplement. The labs were faxed to him so that is what I have done. I get 500 IU Vit D in the Citracal and 800 IU in the vitamin. My Vitamin D levels have not been checked since. About 10 months. I can't remember with certainty WHY, but it seems it had something to do with my calcium at that time was still high. I was 5-6 months post surgery before calcium levels were normal. I just don't understand the anixety attacks. Never had them before and they too can be bruttle. The med was the worst. Sorry to hear about the muscular symptoms you are having. I had those too before surgery, but realized later it was from the Lipitor I was taking. Statin drugs can do that to you.
It is so confusing when the Drs don't agree on treatment. When do you see the new Dr? Feel better soon...Stay in touch...txg
It is so confusing when the Drs don't agree on treatment. When do you see the new Dr? Feel better soon...Stay in touch...txg
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Kodger: Please check out the book UV Advantage by Dr Michael Holick. I looked at the website and it is very interesting...txg
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Texgranny:
I did check it out. Quite interesting! Are you going to try to take extra Vit D?
What do you think is triggering your anxiety attacks? How have they been?
Kelly emailed me back again this week and feels that I haven't been taking enough calcium. Even though my blood work says level are normal, my body is "starving for calcium" as she put it.
Do you notice any differnce if you take less or more calcium?
It seems to affect me quite noticeably. Still have lots of figuring out to do though. Will be seeing an endocronologist too for help.....but not till March. Socialized medicine and all. Maybe she can figure things out.
I did check it out. Quite interesting! Are you going to try to take extra Vit D?
What do you think is triggering your anxiety attacks? How have they been?
Kelly emailed me back again this week and feels that I haven't been taking enough calcium. Even though my blood work says level are normal, my body is "starving for calcium" as she put it.
Do you notice any differnce if you take less or more calcium?
It seems to affect me quite noticeably. Still have lots of figuring out to do though. Will be seeing an endocronologist too for help.....but not till March. Socialized medicine and all. Maybe she can figure things out.
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