Aa
my story - parathyroid, thyroid and low D
I can trace a majority of my health problems to nearly seven years ago, after I birthed a premature infant. Slowly, my energy started to decline. I blamed it on the stress of raising a new baby. But as my child grew older, I grew more tired. Daily naps were a necessity. Other symptoms started to slowly trickle in. Gastro issues. Depression. Anxiety. Weight gain. Weight loss.
In the summer of '08 I became very lethargic and I began breaking out in rashes. My naps increased from one to three hours daily. One doctor told me it was Shingles. But this so called 'Shingles' came and went at least twice a month. Sometimes on my arms, legs, chest and scalp. Shingles only occurred in one spot. But I couldn't get my doctors to run more tests.
Doctors told me to sleep less and I'd lose the weight. Doctors told me my depression was making me tired. Finally, last winter, I was so sick, I thought I was dying. Doctors ran every type of blood test. We discovered my D was an 18. My parathyroid hormone was also slightly high at 67. My calcium tests came back at a 10.4 and a 10.0. One doctor suggested I had parathyroid disease and sent me to an endo.
This was when the real battle ensued. This endo, and his senior doctor, both had to reassure me nothing was wrong with me. It was just a vitamin D issue. But I live in a sunny state. I had been sick for quite a while, even during the summer months when I sat outside and watched my daughter swim in the pool. I was getting plenty of vitamin D then, and I was very sick. I knew I had more than just a vitamin D issue. After going to the parathyroid website and reading about the link between vitamin D and parathyroid, I honestly thought it was parathyroid disease.
I found another endo who gave me an ultrasound, looking for a parathyroid tumor. What she found was a multi-nodular thyroid goiter. I had no idea at the time what that meant. She felt no reason to run thyroid labs as my previous TSH score was only a 2.74. She ran another parathyroid lab. This time, my PTH jumped to a 71. After much begging, I got her to write a referral to the parathyroid surgeon from the website. By this time, it was mid-summer, and I was sunning at the pool again. My D was finally in normal ranges. The surgeon had me get two more calcium and PTH labs. Both came back normal. After paying the $1500 fee, in less than 30 seconds he told me I was barking up the wrong tree. He told me to get tested for Hashimoto's.
I asked why my PTH and calcium had gone up. His answer was, "Two years ago it snowed in Florida."
By this time, I'd researched the TSH scores my endo and the fist two endos had looked at when they'd ruled out thyroid disease. I'd discovered that many people with Hashimoto's have TSH levels beteween 2.0-3.0, and that the current lab ranges many labs used were obsolete.
In late August, as my hair began falling out in clumps, I went back to my endo and asked her to run the antibodies for Hashimoto's (TGab and TPO). I also asked her to run the FreeT3 and FreeT4 tests to determine my thyroid levels. My TPO came back at a 221, which is much higher than the threshold of 35. My free thyroid hormones were also very low. She diagnosed me with Hashimoto's and put me on a thyroid hormone called Synthroid.
When I look back at the myriad mistakes my doctors had made in failing to diagnose me, I just want to scream. Why did it take so long? I had so many of the signs. Many people with Hashimoto's suffer from low vitamin D, depression, fatigue, weight gain and gastro issues. Why couldn't some doctor at some point run the antibody tests?
If you have a vitamin D issue, take my advice. Don't let a doctor rule out thyroid disease based solely on your TSH. TSH is a pituitary hormone, not a thyroid hormone. Only the antibodies and a thyroid ultrasound can tell you if you have thyroid disease. And measuring the frees can tell you exactly how much hormone your thyroid is producing. Don't ever let a doctor sweep your health under the rug and dismiss your concerns. This is your body. Your life. Demand wellness!
By the way, I've switched endos again. The last one should have run the relevant thyroid tests when she noticed the nodules and goiter. Because she failed to do this, and left me in misery for an extra four months, I surely don't trust her to treat my Hashimoto's disease now.
My new endo said that parathyroid and calcium levels can rise slightly in the face of low vitamin D. This was the case with me. I never had a parathyroid problem. My parathyroids were doing exactly what they were designed to do. My endo also said that TSH in a healthy thyroid averages at a 1.1. I wish he had been my doctor seven years ago.
:) Tamra
In the summer of '08 I became very lethargic and I began breaking out in rashes. My naps increased from one to three hours daily. One doctor told me it was Shingles. But this so called 'Shingles' came and went at least twice a month. Sometimes on my arms, legs, chest and scalp. Shingles only occurred in one spot. But I couldn't get my doctors to run more tests.
Doctors told me to sleep less and I'd lose the weight. Doctors told me my depression was making me tired. Finally, last winter, I was so sick, I thought I was dying. Doctors ran every type of blood test. We discovered my D was an 18. My parathyroid hormone was also slightly high at 67. My calcium tests came back at a 10.4 and a 10.0. One doctor suggested I had parathyroid disease and sent me to an endo.
This was when the real battle ensued. This endo, and his senior doctor, both had to reassure me nothing was wrong with me. It was just a vitamin D issue. But I live in a sunny state. I had been sick for quite a while, even during the summer months when I sat outside and watched my daughter swim in the pool. I was getting plenty of vitamin D then, and I was very sick. I knew I had more than just a vitamin D issue. After going to the parathyroid website and reading about the link between vitamin D and parathyroid, I honestly thought it was parathyroid disease.
I found another endo who gave me an ultrasound, looking for a parathyroid tumor. What she found was a multi-nodular thyroid goiter. I had no idea at the time what that meant. She felt no reason to run thyroid labs as my previous TSH score was only a 2.74. She ran another parathyroid lab. This time, my PTH jumped to a 71. After much begging, I got her to write a referral to the parathyroid surgeon from the website. By this time, it was mid-summer, and I was sunning at the pool again. My D was finally in normal ranges. The surgeon had me get two more calcium and PTH labs. Both came back normal. After paying the $1500 fee, in less than 30 seconds he told me I was barking up the wrong tree. He told me to get tested for Hashimoto's.
I asked why my PTH and calcium had gone up. His answer was, "Two years ago it snowed in Florida."
By this time, I'd researched the TSH scores my endo and the fist two endos had looked at when they'd ruled out thyroid disease. I'd discovered that many people with Hashimoto's have TSH levels beteween 2.0-3.0, and that the current lab ranges many labs used were obsolete.
In late August, as my hair began falling out in clumps, I went back to my endo and asked her to run the antibodies for Hashimoto's (TGab and TPO). I also asked her to run the FreeT3 and FreeT4 tests to determine my thyroid levels. My TPO came back at a 221, which is much higher than the threshold of 35. My free thyroid hormones were also very low. She diagnosed me with Hashimoto's and put me on a thyroid hormone called Synthroid.
When I look back at the myriad mistakes my doctors had made in failing to diagnose me, I just want to scream. Why did it take so long? I had so many of the signs. Many people with Hashimoto's suffer from low vitamin D, depression, fatigue, weight gain and gastro issues. Why couldn't some doctor at some point run the antibody tests?
If you have a vitamin D issue, take my advice. Don't let a doctor rule out thyroid disease based solely on your TSH. TSH is a pituitary hormone, not a thyroid hormone. Only the antibodies and a thyroid ultrasound can tell you if you have thyroid disease. And measuring the frees can tell you exactly how much hormone your thyroid is producing. Don't ever let a doctor sweep your health under the rug and dismiss your concerns. This is your body. Your life. Demand wellness!
By the way, I've switched endos again. The last one should have run the relevant thyroid tests when she noticed the nodules and goiter. Because she failed to do this, and left me in misery for an extra four months, I surely don't trust her to treat my Hashimoto's disease now.
My new endo said that parathyroid and calcium levels can rise slightly in the face of low vitamin D. This was the case with me. I never had a parathyroid problem. My parathyroids were doing exactly what they were designed to do. My endo also said that TSH in a healthy thyroid averages at a 1.1. I wish he had been my doctor seven years ago.
:) Tamra
Heather, you MUST read this book: www.thyroidbook.com
It explains the root of the cause. I have hereditary Hashi as well, but my mother, aunt and I all have one thing in common prior to diagnosis and any Hashi symptoms. Bloated stomachs. IBS, etc. I can remember it as a child. In Dr. K's book referenced above he contributes diet to the decline of the thyroid. The molecular structure of gluten is similar to that of the thryoid. We may be gluten intolerant, even if we do not test positive for celiac. After years of consuming gluten, it destroys the gut lining and seeps into the bloodstream, then the antibodies attack the gluten, eventually attacking the thyroid.
Since giving up gluten three months ago, I've had to cut back on my thryoid hormone intake by 1/3. I was maxed out on hormone, Synthroid 150 and Cytomel 10. Now I am on Synthroid 125 and Cytomel 2.5. Why? My stomach is working better and able to convert T4 to T3 again.
Hashimoto's is not just a thyroid issue. It is an auto-immune disease affecting our entire bodies- gut, liver, kidneys, adrenals, brain... Have you had your adrenals tested with the 24 hour saliva test?
Have you had liver, kidney, cholesterol, vitamins D, B12, Iron tested?
Many hypos will have adrenal fatigue. Even women over 40 without hypothyroidism will be at risk, especially if we consume caffeine.
A T4 drug alone will most likely not make you feel better. I wonder if your endo treats only your TSH and leaves your FT4/FT3 in the low ranges. Shame if she does.
:) Tamra
It explains the root of the cause. I have hereditary Hashi as well, but my mother, aunt and I all have one thing in common prior to diagnosis and any Hashi symptoms. Bloated stomachs. IBS, etc. I can remember it as a child. In Dr. K's book referenced above he contributes diet to the decline of the thyroid. The molecular structure of gluten is similar to that of the thryoid. We may be gluten intolerant, even if we do not test positive for celiac. After years of consuming gluten, it destroys the gut lining and seeps into the bloodstream, then the antibodies attack the gluten, eventually attacking the thyroid.
Since giving up gluten three months ago, I've had to cut back on my thryoid hormone intake by 1/3. I was maxed out on hormone, Synthroid 150 and Cytomel 10. Now I am on Synthroid 125 and Cytomel 2.5. Why? My stomach is working better and able to convert T4 to T3 again.
Hashimoto's is not just a thyroid issue. It is an auto-immune disease affecting our entire bodies- gut, liver, kidneys, adrenals, brain... Have you had your adrenals tested with the 24 hour saliva test?
Have you had liver, kidney, cholesterol, vitamins D, B12, Iron tested?
Many hypos will have adrenal fatigue. Even women over 40 without hypothyroidism will be at risk, especially if we consume caffeine.
A T4 drug alone will most likely not make you feel better. I wonder if your endo treats only your TSH and leaves your FT4/FT3 in the low ranges. Shame if she does.
:) Tamra
I didnt add I am only 33 and have been dealing with this since i was 23-24.
My story is the opposite...I have a hereditary Hash and have been treated for that for years now and I am starting to wonder if it is more. I am so tired of not feeling normal again...although i dont remember what normal would be. I did get my endo to switch me to Synthroid recently after a couple of years of asking. It took me that long for her to listen, I am wondering how long it will take for her to do more then tell me i have to lose weight and that is my issue. Sad thing is, she has Hash also...but with my medical she is my only choice.
My hair is falling out and I gain crazy amounts of weight on a diet and exersize plan, constantly tired, bad memory, dry skin. I have had pains in my right side that drops me to my knees and before finding this place, i didnt realize there could be a correlation between the two. It is nice to know I am not alone in my constant battle with the endo and my own body.
My hair is falling out and I gain crazy amounts of weight on a diet and exersize plan, constantly tired, bad memory, dry skin. I have had pains in my right side that drops me to my knees and before finding this place, i didnt realize there could be a correlation between the two. It is nice to know I am not alone in my constant battle with the endo and my own body.
Wow, Thanks for writing your story. I am newly diagnosised with hypothyroid and Vit D and B12 deficiency, and reading your post is like reading what my life has been like for the past few years, almost. I have been steadily gaining weight-and no amount of diet or exersice would help me lose it.Pluse I have had so many headaches and digestive problems and depression. I work in a high stress field, and all the doctors would tell me is take a vaction or change jobs. My TSH would be normal up until this last blood test.
Now I am finally getting treatment. I am on Levoxyl, Vitamin D and B12. I am still tired and haven't lost much weight yet-but I'm not as depressed or stressed out. I have found a good endo, so I hope things work out for me.
Thanks for posting your story. It has made me realize this is a common problem. Maybe doctors should start reading these-then they could diagnosis their patients better!
Now I am finally getting treatment. I am on Levoxyl, Vitamin D and B12. I am still tired and haven't lost much weight yet-but I'm not as depressed or stressed out. I have found a good endo, so I hope things work out for me.
Thanks for posting your story. It has made me realize this is a common problem. Maybe doctors should start reading these-then they could diagnosis their patients better!
The other rashes I got were on my scalp. I only get those when my free levels are too high. Example, when I was on too much Cytomel or when I had nodules that would leak hormone. My nodules have shrunk on the hormone and I no longer get the scalp rashes. I did get the scalp rash a few months ago when I needed to decrease my Cytomel.
BTW - For the leg and arm rashes, some Hashis also find more relief by taking a combined beta blocker I and II. For example, a heartburn pill like Zantac and an allergy pill like Zyrtec. I take a Zantac in the afternoon and a Zytec in the morning. I don't take any pills/vitamins within four hours of my thyroid hormone.
:) Tamra
BTW - For the leg and arm rashes, some Hashis also find more relief by taking a combined beta blocker I and II. For example, a heartburn pill like Zantac and an allergy pill like Zyrtec. I take a Zantac in the afternoon and a Zytec in the morning. I don't take any pills/vitamins within four hours of my thyroid hormone.
:) Tamra
Hashi rashes are commonly on the arms and legs. Typically summer heat and sun trigger these rashes. Please print this and show it to your mom. You NEED the Tgab and TPOab tests. I would get these rashes. I still get them if I sit in the sun too long. However, they are about 1/10 as bad now that I am on thyroid hormone.
:) Tamra
:) Tamra
Ugh. The more I read your posts, the more I see the similarities between your problems and my current ones. Basically the only difference is my hair isn't falling out in clumps. My Vitamin D levels were at 18 too. I've been taking the pills for awhile and feel NO difference. And all I keep hearing from my doctor and parents is you eat too much junk food and don't get up off your fat you-know-what. Question though. What were your rashes like? Almost every spring or summer for the past two years (especially bad last May) I have gotten a poison-ivy like rash on the inside of my arms and a red painful rash on my legs. The funny thing was I could not think of any contact with poison ivy. It would not go away no matter what I did--calamine lotion or alcohol. It ended up drying up on its own. I had to run my arms under scalding hot water to get relief from the itching. I'm dreading this summer...
You must join this user group in order to participate in this discussion.
You are reading content posted in the recovery after vitamin D deficiency Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
