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Anyone have Pseudohypoparathyroidism
Hi everyone, hope all is well. I've just joined this and was wondering if anyone has Pseudohypoparathyroidism as I know it is very rare? I was diagnosed with it around 14 years ago when I was 10.
Hi!
I'm Pseudohypoparathyroid (and Hypothyroid) and I want to know more about the sort of thinking/visual problems you guys have! My Endo has no info at all.
My own experience, and what Raleigh18 has said (quoted below), sounds a lot like the pattern of problems with 'nonverbal learning disorder'? I'd love to know if others with Pseudohypoparathyroidism experience this pattern of problems too. [I don't have maths problems myself, but problems with executive functioning, visual memory, spatial skills & face recognition (& more)].
A good description is here: http://www.iag-online.org/resources/New-Items-2e/Misunderstood-Child--NLD.pdf
Raleigh18 said "I accept I have poor math, spatial skills and visual understanding & I will not overcome this by trying harder. It is embarrassing that people look so much alike to me that I have problems recognizing them. Even if I do, there's often an extending delay between seeing them and recognition. "
I'm Pseudohypoparathyroid (and Hypothyroid) and I want to know more about the sort of thinking/visual problems you guys have! My Endo has no info at all.
My own experience, and what Raleigh18 has said (quoted below), sounds a lot like the pattern of problems with 'nonverbal learning disorder'? I'd love to know if others with Pseudohypoparathyroidism experience this pattern of problems too. [I don't have maths problems myself, but problems with executive functioning, visual memory, spatial skills & face recognition (& more)].
A good description is here: http://www.iag-online.org/resources/New-Items-2e/Misunderstood-Child--NLD.pdf
Raleigh18 said "I accept I have poor math, spatial skills and visual understanding & I will not overcome this by trying harder. It is embarrassing that people look so much alike to me that I have problems recognizing them. Even if I do, there's often an extending delay between seeing them and recognition. "
Me to, i was diagnosed when i was 13 and all they wanted to do is send me off for blood test and as i had a neadle fobia as you can imagine this wasnt fun.
The surgeries were just to correct various problems, but not ones necessarily resulting from php.
I have Pseudohypoparathyroidism and was Diagnosed at age 4 1/2 or 5, which was about 34-35 years ago. I was diagnosed by the head of the neonatal dept at University of Cincinnati with Children's Hospital of Cincinati at the time. I have been on Calcium and a synthetic Vit D, which used to be 13 years ago- calderol and now I am taking Rocaltrol. I take both the Calcium and Rocaltrol along with making sure I eat a proper diet to make sure my Calcium levels are good. I had a Calciemic Seizure at 4 1/2 years old and have not had one since. My levels have almost always been good and I am living a great and productive life. I have been through 5-6 years of College and work as a LPN. I have been married for 10 year now and the Pseudohypoparathyroidism doesn't really affect that at all. Just have to keep going to the Dr's appt to make sure my levels are good that's it. So I don't know what you are talking about surgery because most of the time surgery isn't the answer unless you haver Hyperthyroidism to go with the Pseudo. In that case you may have a goiter and that may have to be removed. Hope you find good info in what I typed.
Thanks,
Thanks,
There are a few people who have PHP,it is quite rare moreso than Hypopara thyroidism.The symptoms I can relate with are the lack of energy and sleepiness during the day,which i find have been linked.I think the way to deal with it is simply take an hour nap during the day,that seems to help me alot gives me a new lease of energy .
As for the 'inexplicable thinking problems' I have had similar problems,reported to university academic support staff who labelled it as dyslexia.However it has been said of medical info on the internet that there is mental slowness/mentation in 50% of those with PHP,how to deal with it well,I think you have found your way to remember things,ie carrying a note pad,calender etc.
Be encouraged.
As for the 'inexplicable thinking problems' I have had similar problems,reported to university academic support staff who labelled it as dyslexia.However it has been said of medical info on the internet that there is mental slowness/mentation in 50% of those with PHP,how to deal with it well,I think you have found your way to remember things,ie carrying a note pad,calender etc.
Be encouraged.
In 1969, diagnosed chronic schizophrenia, GAD in 1991, in 1994 a psychologist said I was autistic, another doctor said I am bipolar, now a psychiatrist said I was so intelligent as to appear as if insane and I was guilty. I recall in 1983 having a bone spur removed. I found out I had a positive Chvostek's sign, Trousseau's sign, cafe au lait spots, knock-knees, slightly bowed long bones, short fat feet, I ate plenty of ice cream and food and gained no weight. During a camping trip with my family, I was happy, relaxed, awoke with a crick in my neck. It was a full body muscle contractions lasting all day long. My father asked me if I had polio? I said I don't know. Calcium has returned me to being highly social. I talk to people calmly now and I find I care about my church more. Linda Sharp, my new name is rickety sue.
I'm listing medical problems not to complain, but because I am curious if others with psuedo-pseudohypoparthyroidism and pseudohyoparathyrodism have these symptoms, and if so, what helped.
In answer to your question Kynbn, I often have quick, sharp pains, but to the back of the head, not often. I get them all over, but with consistency, under my left ribcage and lower abdomen.
I've relocated all my life because of the company my dad worked for, then because of my employment or my husband's. That has resulted in me having to change physicians far more often than other folks, My experience has been that docs in all specialties have little interest in providing help beyond the obvious and easy to diagnosis, regardless of the health problem. Being assertive does not change that they are unable or unwilling to try and help.
A decade ago, I sought a second opinion from a endocrinologist about an hour away from where I lived at that time. I wanted to see if a large nodule could be removed without also removing half my thyroid; answer was no. But the blessing was that he recognized I had PHP1A; I didn't know there was a name for what I had. I saw him once and since moved to a new location several hours away from him.
My health problems became far worse the past 5 years and I developed new problems, such as urinary track infections, despite drinking lots of water.
I am being treated for asthma, chronic sinus allergies to many things, high cholesterol, sleep apnea, daytime sleepiness, restless legs, sluggish thyroid and high blood pressure. I see a chiropractor for back and hip problems, plantar fasciitis and need to get bone spurs removed from feet.
During the past decade, my vitamin D has ranged from normal to way below normal.
They corrected with surgery hernias (when I was an infant) and with more than one surgery late in life, lazy eye and enlarged tonsils (yes, tonsils can actually grow back following removal).
If I could fix one problem today though, it would be the low-to-none energy. The next one would be inexplicable thinking issues. I am in menopause, but because of other health issues, hormone replacement may not be a good idea.
I accept I have poor math, spatial skills and visual understanding & I will not overcome this by trying harder. It is embarrassing that people look so much alike to me that I have problems recognizing them. Even if I do, there's often an extending delay between seeing them and recognition.
I cope with short-term memory problems by carrying notes and calendar info with me at all times and notes everywhere. I label the contents of drawers and closets with notes facing the outside. I do want to find a way to competently accomplish certain "no-brainer" tasks, such as collating papers.
Two years ago, I felt my mental capacities were much worse. I saw a neurologist for the initial tests (for brain seizures, MRI and can't remember other test), but that only indicated inflamed sinuses. I was put on thyroid meds for the first time after that, and that situation became a little better.
What I don't understand is that out of the blue, I will suddenly no longer remember how to do some task, but I think I am doing it correctly. This usually happens with a machine. I will operate the same office machine or vehicle for years with frequency. Then one day do not understand, why if turn on a switch, I'm not getting the desired results, because I don't realize I am now may be turning the wrong switch; this "I think I'm doing this correctly, but am not" can go on for days.
My glucose levels have always been normal and diabetes/high glucose levels do not exist anywhere in my family. But I've had the symptoms of diabetes (chronic dry mouth, frequent urination, fatigue, bruise easily, can't think straight if no food content for several hours) all my life, save for unexplainable weight loss. I had chronic dry mouth even when I did not take a single Rx. I believe the frequent nausea is because of the sinus drainage.
I've tried since I was 4 to control my weigh and most of my life, was able to no better than stay 20 lbs. above an ideal weight and less frequently, 10-15 above. Unfortunately, my weight began creeping up the past dozen years and I am now carry 85 extra lbs.
My parents had great shame over my feet; I was required to keep them covered if I was around someone other than immediate family. Overseas, even physicians tried to shame me over it. This included when I went to a specialist for chronic stomach problems when I was 15/16. He did no related tests, but began shrieking at me that I should be embarrassed, cited situations where my feet might be seen & take measures to not have kids.
I've not found much info on psuedo-pseudohypoparthyroidism and pseudohyoparathyrodism and thank you kynbn, because you are the first person I've made contact with who has had that diagnosis.
In answer to your question Kynbn, I often have quick, sharp pains, but to the back of the head, not often. I get them all over, but with consistency, under my left ribcage and lower abdomen.
I've relocated all my life because of the company my dad worked for, then because of my employment or my husband's. That has resulted in me having to change physicians far more often than other folks, My experience has been that docs in all specialties have little interest in providing help beyond the obvious and easy to diagnosis, regardless of the health problem. Being assertive does not change that they are unable or unwilling to try and help.
A decade ago, I sought a second opinion from a endocrinologist about an hour away from where I lived at that time. I wanted to see if a large nodule could be removed without also removing half my thyroid; answer was no. But the blessing was that he recognized I had PHP1A; I didn't know there was a name for what I had. I saw him once and since moved to a new location several hours away from him.
My health problems became far worse the past 5 years and I developed new problems, such as urinary track infections, despite drinking lots of water.
I am being treated for asthma, chronic sinus allergies to many things, high cholesterol, sleep apnea, daytime sleepiness, restless legs, sluggish thyroid and high blood pressure. I see a chiropractor for back and hip problems, plantar fasciitis and need to get bone spurs removed from feet.
During the past decade, my vitamin D has ranged from normal to way below normal.
They corrected with surgery hernias (when I was an infant) and with more than one surgery late in life, lazy eye and enlarged tonsils (yes, tonsils can actually grow back following removal).
If I could fix one problem today though, it would be the low-to-none energy. The next one would be inexplicable thinking issues. I am in menopause, but because of other health issues, hormone replacement may not be a good idea.
I accept I have poor math, spatial skills and visual understanding & I will not overcome this by trying harder. It is embarrassing that people look so much alike to me that I have problems recognizing them. Even if I do, there's often an extending delay between seeing them and recognition.
I cope with short-term memory problems by carrying notes and calendar info with me at all times and notes everywhere. I label the contents of drawers and closets with notes facing the outside. I do want to find a way to competently accomplish certain "no-brainer" tasks, such as collating papers.
Two years ago, I felt my mental capacities were much worse. I saw a neurologist for the initial tests (for brain seizures, MRI and can't remember other test), but that only indicated inflamed sinuses. I was put on thyroid meds for the first time after that, and that situation became a little better.
What I don't understand is that out of the blue, I will suddenly no longer remember how to do some task, but I think I am doing it correctly. This usually happens with a machine. I will operate the same office machine or vehicle for years with frequency. Then one day do not understand, why if turn on a switch, I'm not getting the desired results, because I don't realize I am now may be turning the wrong switch; this "I think I'm doing this correctly, but am not" can go on for days.
My glucose levels have always been normal and diabetes/high glucose levels do not exist anywhere in my family. But I've had the symptoms of diabetes (chronic dry mouth, frequent urination, fatigue, bruise easily, can't think straight if no food content for several hours) all my life, save for unexplainable weight loss. I had chronic dry mouth even when I did not take a single Rx. I believe the frequent nausea is because of the sinus drainage.
I've tried since I was 4 to control my weigh and most of my life, was able to no better than stay 20 lbs. above an ideal weight and less frequently, 10-15 above. Unfortunately, my weight began creeping up the past dozen years and I am now carry 85 extra lbs.
My parents had great shame over my feet; I was required to keep them covered if I was around someone other than immediate family. Overseas, even physicians tried to shame me over it. This included when I went to a specialist for chronic stomach problems when I was 15/16. He did no related tests, but began shrieking at me that I should be embarrassed, cited situations where my feet might be seen & take measures to not have kids.
I've not found much info on psuedo-pseudohypoparthyroidism and pseudohyoparathyrodism and thank you kynbn, because you are the first person I've made contact with who has had that diagnosis.
Pseudo Hypoparathyroidism is very rare and Im finding it to be a blessing in disguise because not many people have it and I am unique,so are all who have it as well.I have had PHP for about 20 years now diagnosed when 3 years old(i think).What I understand of PHP is that although all of us(PHP people)have common symptoms such as fatigue,lack of energy etc.However the intensity of such symptoms vary between each PHP individual,making it difficult for endocrinologist to actually put their finger on actually treating us patients.We are actually part of the medical team as I myself although having PHP have been interested by it and carried out personal research to put understand my illness,all PHP people ought to(if not already)seek to provide as much info(different unexpected symptoms) as possible to doctors by keeping a log book of all the different symptoms that have happened during the time of your last appointment.
I've indeed found my Type 1a PHP to be unpredictable and effecting my studies at Law School.Nevertheless Ive learned more about PHP during this time.Have any of you suffered such symptom of quick,sharp pains at the back area of your head?.
I've indeed found my Type 1a PHP to be unpredictable and effecting my studies at Law School.Nevertheless Ive learned more about PHP during this time.Have any of you suffered such symptom of quick,sharp pains at the back area of your head?.
I'm sure that any thyroid problem is only a part of what you are dealing with, but I suggest that diagnosing and treating a thyroid patient based on TSH alone is usually a big problem. That is because TSH is a pituitary hormone that is affected by so many variables that it doesn't even correlate well with the biologically active thyroid hormones, Free T3 and Free T4, much less correlate with hypo symptoms.
So I think it would be a good idea to request testing for FT3 and FT4, along with the TSH. If the doctor resists then you should insist on it and don't take no for an answer. Then the next thing you should be aware of is that the reference ranges used for FT3 and FT4 are so broad that just being anywhere within the ranges may not be adequate for your needs. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.
If you are successful in getting those tests done, then request a copy and post results and reference ranges here and members will be glad to help interpret and advise further.
So I think it would be a good idea to request testing for FT3 and FT4, along with the TSH. If the doctor resists then you should insist on it and don't take no for an answer. Then the next thing you should be aware of is that the reference ranges used for FT3 and FT4 are so broad that just being anywhere within the ranges may not be adequate for your needs. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.
If you are successful in getting those tests done, then request a copy and post results and reference ranges here and members will be glad to help interpret and advise further.
I am on Levothyroxine after half of my thyroid and parathyroid was removed in order to take out a large nodule, which was benign. I was put on that med when I was 45. My TSH was 3.3 in February 2011, which was .3 above normal range, but my doc didn't change my Rx amount. The feds changed the limit on that test to 3 in early 2003.
I have factors other than PHP1A that contribute to fatigue. I am on high blood pressure meds and antihistamines. I am being treated for sleep apnea, restless legs, very severe chronic sinus allergies and asthma.
I am also seeing a chiropractor for back, hip and neck pain and a podiatrist for plantar fasciitis and heel spurs, so while I used to get enough exercise, I have not been able to do so in recent years.
I'd like to hear from other folks who have PHP1A or closely related disorders, learn of books/websites that has info not just aimed at physicians and any thing people with PHPP1A have found that has helped.
I have factors other than PHP1A that contribute to fatigue. I am on high blood pressure meds and antihistamines. I am being treated for sleep apnea, restless legs, very severe chronic sinus allergies and asthma.
I am also seeing a chiropractor for back, hip and neck pain and a podiatrist for plantar fasciitis and heel spurs, so while I used to get enough exercise, I have not been able to do so in recent years.
I'd like to hear from other folks who have PHP1A or closely related disorders, learn of books/websites that has info not just aimed at physicians and any thing people with PHPP1A have found that has helped.
From those symptoms, I just wondered if you have ever been adequately tested for thyroid. If you have been tested, could you please post the results and reference ranges shown on the lab report?
I posted this two weeks ago, but am reposting in hope of getting a response.
I'm nearly 50, but was about 40 when I learned I had PHP1A. I want to hear from people who have it or know about the condition, including anything that helped them, or can direct me to books/websites with that info. Almost everything I find on the Internet is aimed at medical professionals.
I found out after I saw an endocrinologist in another city for a second opinion on a surgery. He diagnosed me as having PHP1A, but noted that I don't have soft issue calcification, which would best fit pseudopseudohypoparathyroidsim.
I had been to another endocrinologist in a major city few years earlier and it was a wasted trip. Following the diagnosis, I met with the only endocrinologist in my region accepting new patients, and he could tell me literally nothing. Returning to the one who diagnosed me is not a good option because I have since moved to another state from him.
I have multiple health conditions and learning problems. However, my bone scan indicated normal density. My Vit D ranges from normal to very low.
The most frustrating condition is being chronically tired, followed by the difficulty losing and maintaining weight loss. In recent years, these problems have gotten much worse. I do see physicians regularly, including specialists, who have been unable to provide much relief.
Even as a pre-schooler, I had trouble sleeping at night and wanted to nap during the day. I am treated now for sleep apnea and restless legs, which helped slightly.
Hope you all can help me find more.
I'm nearly 50, but was about 40 when I learned I had PHP1A. I want to hear from people who have it or know about the condition, including anything that helped them, or can direct me to books/websites with that info. Almost everything I find on the Internet is aimed at medical professionals.
I found out after I saw an endocrinologist in another city for a second opinion on a surgery. He diagnosed me as having PHP1A, but noted that I don't have soft issue calcification, which would best fit pseudopseudohypoparathyroidsim.
I had been to another endocrinologist in a major city few years earlier and it was a wasted trip. Following the diagnosis, I met with the only endocrinologist in my region accepting new patients, and he could tell me literally nothing. Returning to the one who diagnosed me is not a good option because I have since moved to another state from him.
I have multiple health conditions and learning problems. However, my bone scan indicated normal density. My Vit D ranges from normal to very low.
The most frustrating condition is being chronically tired, followed by the difficulty losing and maintaining weight loss. In recent years, these problems have gotten much worse. I do see physicians regularly, including specialists, who have been unable to provide much relief.
Even as a pre-schooler, I had trouble sleeping at night and wanted to nap during the day. I am treated now for sleep apnea and restless legs, which helped slightly.
Hope you all can help me find more.
I know exactly how you feel! I was diagnosed 9 years ago when I was 14. Everyday is a struggle for me. I'm still to this day trying to get my meds regulated so I feel good. Its hard. I'm always aching. I'm always tired. My family sometimes forgets that I'm sick and gets tired of me never feeling well. There are so few people with this disorder its hard to find anyone who understands.
Again, I'm so sorry you have to deal with this issue. And again, as above, I recommend the website: hypoparathyroidism.org.
Good luck.
Good luck.
I have found that because it is a rare disease and because I don't actualy look ill it is hard to explain to anyone the effects it can have on your everyday life but it would be nice to talk to someone who has the same problems.
I was also diagnosed with pseudohypoparathyroidism about 19 years ago I was treated a bit like a guinie pig have you experienced the same.
Debbie
Debbie
Are you familiar with this website: hypoparathyroidism.org? They have pseudohypoparathryoidism (phew, that's a long one) described on their page of definitions. They too have a forum that you can join and throw out questions to. Perhaps if you don't get any responses here, you can try there. I do hope you hear something here though. But you're right - it's rare.
Good luck.
Good luck.
1 Comments
My daughter has just been diagnosed with it, she is 10. We are yet ti find any support groups
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