Adult Hypophosphatasia
Posted , 20 users are following.
Hello is there anyone out there in the UK with adult Hypophosphatasia. If so I would be grateful to hear from you as I am searching for support and answers. Many thanks.
Elderberry.
0 likes, 48 replies
juliana14
Posted
Snap! Yes, fatigue and also autoimmune thyroiditis. I'm not sure that the fatigue is due to the hypophosphatasia (HPP) though although many people do complain of fatigue. I think its hard to prove the connection, especially being hypothyroid which also cause a slowing down of everything. I suppose its worth making sure the thyroid is being correctly treated. If you are being treated by the TSH alone for this then its worth bearing in mind that the UK reference range of 'normal' is much higher than many countries and there is a debate that anything over 2.5 should be treated. Do you know your T4 & T3 levels?
Re the vit D, I hope your doctor is monitoring your calcium and phosphate as vit D can raise these and in HPP it is very important to keep these as close to normal as possible. Vitamin D is usually contraindicated although I take a low dose but have it monitored every 3 months.
This website may be of interest if you haven't already spotted it:
http://www.hypophosphatasia.com/sources-support/rare-disease-organizations
All the best to you.
Elderberry
Posted
I too have fatigue. I think is due to the constant pain. I don't get the fractures but I get build ups of calcium on my bones and down my tendons. I have had two operations to remove 8mm hooks this year. I also have adult hypophosphatasia. It would appear there are many different variations in symptoms. I agree that the link to the above site given by Juliana is great. I don't know of anything in the UK as yet although I have just been taking part in some research into the effects of HPP on my daily life by Alexion. Best wishes to you all.
kimcon Elderberry
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kimcon Elderberry
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Cator1956 Elderberry
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i have hypophosphatemic osteomalacia and looking on line these seem to be similar in many ways. I am in the UK. I don't know about you but I find most doctors have never heard of this.
How is it affecting your daily life? Mine is badly disrupted and I am unable to work.
kimcon Cator1956
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Cator1956 kimcon
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if you look back on the hypophosphatemic osteomalacia thread I have given a short explanation of what I believe this cursed bone condition does and the mechanics of it.
kimcon Cator1956
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I'm sorry you are suffering. I'd like to know truthfully what I could expect to happen to me physically. And I will look into RUDY. Thank you so much.
kimcon Elderberry
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Elderberry
Posted
there is now the RUDY study in the UK. It is researching a lot of rare bone diseases in the UK. Have a look at the link https://research.ndorms.ox.ac.uk/rudy/home
it would be wonderful if you were able to sign up. Especially HPP patients as we are short on numbers for the study
all the best
elderberry
andrew17396 Elderberry
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michael24940 andrew17396
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lisa14551 andrew17396
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michael24940 lisa14551
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You should reach out to Dr. Michael P. Whyte in the U.S. (St. Louis to be exact). He is currently the worldwide HPP expert, I will be seeing him within the next few weeks to discuss my recent diagnosis.
vicky50822 Elderberry
Posted