Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use https://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

Join the forum, it's quick and easy

Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use https://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use
Hyperparathyroid Forum
Would you like to react to this message? Create an account in a few clicks or log in to continue.

Hmm not sure

4 posters

Go down

Hmm not sure Empty Hmm not sure

Post by Hadleigh Fri Nov 07, 2014 6:07 pm

Just got my latest results

Calcium 2.4 adjusted 2.34 more or less the same as last test (2.2-2.6)
Pth 3.5 last one 1.7 so gone up despite calcium staying the same Suspect (1.6-6.9)
Vit d 27 was 40 Suspect (2 away from severe deficiency again)
ALP and GGT still way over the top 

Any views on that lot ? Calcium is perfect but I think pth should be lower,  Vitd is so not good, I have loads of vitd supps but they don't agree with me Rolling Eyes

Nelly
Hadleigh
Hadleigh

Posts : 801
Join date : 2014-03-29
Location : Somerset, UK

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Brigitte0 Fri Nov 07, 2014 7:25 pm

According to most of what I've read and understood, the PTH levels can vary quite a lot for the first few months at least and I wouldn't worry about it too much much for the time being. The Vit D could be better of course, but then the sun isn't around much and winter is coming on. I haven't had my Vit D tested at all since the op, but everything will be done the week before I see the Endo in December. 

How do you feel in yourself, Nelly? Hope things have picked up for you by now. 

Love and hugs 

Brigitte xxxx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Hadleigh Fri Nov 07, 2014 7:42 pm

Mr M said it would take a few months for levels to normalise so I'm not too bothered, just seemed quite a jump from 2 weeks ago. As far as Mr M and GP are concerned I don't need calcium and pth tested again but I think I will sneak it onto my next thyroid test in a few weeks. 

Vitd is a huge problem for me as the supps make me feel crappy, I can only tolerate 800iu a couple of times a week, there is no chance of me taking the high doses I need. 

Not sure how I feel, still get very tired, brain fog, off balance, cold and now have another uti so on a longer course of antibs. I did a Pilates class this week and seriously over stretched my op scar so that has been quite painful and I still have swallowing difficulties which is annoying, I'm hoping its still swelling yet to go down.

How are you doing ? I hope you are feeling a bit better.

Nelly
Hadleigh
Hadleigh

Posts : 801
Join date : 2014-03-29
Location : Somerset, UK

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Brigitte0 Fri Nov 07, 2014 8:47 pm

It's always nice to know what your various levels are doing though, isn't it! You feel as if you have a tiny bit of control over something you have no control over whatsoever. Wink  

I'm sorry you're still not well and I hope the antibiotics kill off the uti with good haste. Having that sticking around won't improve the brain fog as some water infections can have a surprising effect on the mind. I hope also that your thyroid is behaving through all this hassle. 

I don't really know how I am either, though I do know I'm not right. The op seemed to throw my whole system into disarray and cause all sorts of problems I could do without. My GP has had an ongoing correspondence with the hospital ever since they sent me home and they haven't wanted to see me again. However, I've been having some sort of blackouts/absences after a gap of about 22 years, so he was going to refer me back to Neurology when I spoke to him today. My 2 yearly head MRI is the week after next, so perhaps they will see me this time,  rather than write another letter. My GP did say that the recent letters from consultants connected to my hospital stay had stated there was no reason why I couldn't drive after all (though they didn't own up to why there was a mistake on the discharge notes and the letter to the GP). However I then told him I was missing time in some instances and whether I'm blacking out or falling asleep, it's not right that I should be doing it at odd times in the day, so we agreed I should not drive after all. So near and yet so far! I also have that off balance thing going on as well and no one can tell me why that happens either. I had a kidney scan (finally) this week, but it could take some time to get the results because they go back to Clinical Genetics and not my GP. Nobody tells me anything, or if they do, it's had to go slowly through several channels first. 

I've never got back into my Pilates and I could only manage 10 minutes at a time with HPT so it would take me ages to get back into it. I am seriously unfit and can only manage 5 slow minutes on the exercise bike! I can only walk the dog if someone else is around at the moment, in case I have a funny 5 minutes so I feel a bit caged in at the moment. One of these days, I'm going to turn the proverbial corner and the pathway to good health will be lit up before me through the flowers!!  flower I hope that will happen for you as well, Nelly Smile 

Love and hugs 

Brigitte xxxx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Hadleigh Fri Nov 07, 2014 9:09 pm

I also have the off balance symptom, some days i find it difficult to walk straight, I've had it for years and have put it down to thyroid disease as it does appear to be a common symptom. 

I'm really sorry to hear you are still having problems, you must be well cheesed off, its always complicated when several things are going wrong at the same time and doctors struggle to get their heads round everything Rolling Eyes story of my life !

Hopefully better times are round the corner, keep smiling jocolor

Nelly
Hadleigh
Hadleigh

Posts : 801
Join date : 2014-03-29
Location : Somerset, UK

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Amanda Lynne Sat Nov 08, 2014 12:30 pm

Hi Brigitte & Nelly
I'm really sorry you are having such a crap time after surgery, it's not fair and doctors do not seem to think there is any hurry to get you completely diagnosed and on to better health. 
Brigitte I hope you get those answers about why you have the absences and you can get back to driving again, I know how hard it is for you if you can't.
Nelly I can't take the vit d supplements either they make me feel really bad. Have you ever looked into one of those light boxes (I don't mean literally) I don't know if that would help Vit d or not, just a thought.
Sending you both love and healing hugs and hoping each day you feel a bit better.
Amanda xxxx
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Hadleigh Sat Nov 08, 2014 1:16 pm

Apparently 5-10 mins on a sunbed every few weeks (6 I think) will keep Vitd topped up and its not long enough or frequent enough to cause skin damage. I did ask at a local beauty clinic and they said they have one lady who uses their tanning tower to keep her Vitd levels good. Will do a bit more research on that but as with everything some experts say yes and some say no Rolling Eyes

Have you tried the Better You Vitd spray Amanda ? I was sent a trial one but never used it as it was 3000iu so was a bit nervous about taking that much. I have loads of Fultium 800iu so might just take them on and off but I know I'll never get my levels into the replete range.

Nelly
Hadleigh
Hadleigh

Posts : 801
Join date : 2014-03-29
Location : Somerset, UK

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Amanda Lynne Sat Nov 08, 2014 2:08 pm

Hi Nelly
No I've not tried that, luckily my last vit d levels were up to 84 (all the gardening helped) but I didn't take any supplements as suggested by useless Endo, she wanted me to take 5000iu !!!!! levels were floating between 47-55 so I didn't do that and it just came up naturally. It was last taken in Sept so it's probably dropped a bit by now.
I would just keep yourself topped up on the 800iu and take as much as your body will accept without it making you feel worse than you do now.
Amanda xxxx
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Hadleigh Sat Nov 08, 2014 2:30 pm

Highest mine got to in the summer was 40 and I did spend a lot of time out doors. Maybe now the pth problem is supposedly "cured" my levels will improve, time will tell I guess.

Nelly
Hadleigh
Hadleigh

Posts : 801
Join date : 2014-03-29
Location : Somerset, UK

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Little Audrey Mon Nov 10, 2014 2:37 am

Geez, Nelly, you are going through a rough patch, aren't you? Sad I'm so sorry. Darn our stupid endocrine systems!!

Your PTH and calcium levels look ok to me. I converted them to US numbers so I could compare them to mine, and they are actually better than mine. My latest calcium was 9.7 with a PTH of 42. Your numbers converted would be calcium 9.6 and PTH 33.0. That is, if I calculated them correctly, but I think I did. So if you still have a problem, I most certainly do too! affraid I have entered my numbers into a couple different normograms, and they come back normal. I think we're both good.

Sorry about the UTI. I have LOTS of experience with those. I seem to be doing quite a bit better lately. I am now taking a few different supplements to prevent them, and I'm wondering if getting some of my hormones normalized is helping now too. I was getting them every 5 or 6 weeks for several months. My last 2 were 9 weeks apart, and it's now been 9-1/2 weeks since my last one. I am praying I can go for at least 12 weeks without one, as my urologist told me if I get as many as 6 a year, she wants me to start taking a daily antibiotic and use estrogen cream, and I don't want to do either of those things. I have been taking D-mannose, fem-dophius (a probiotic), and SagaPro (a supplement for bladder strength and health). I am really hoping I have finally found a way to avoid these darned things! I think getting my adrenal issue taken care of might have something to do with my little lucky streak. Between the thyroid problem and the adrenal issue, I think my immune system was just shot to heck! Oh, and let's not forget struggling with hyperparathyroidism for at least several years! I think it's going to take some time for my body to completely recover from all of these things. Is it any wonder I was getting UTIs so frequently?

I too have a LOT of trouble with balance. I fall over and crash into walls and various other things pretty regularly. A couple of months ago I tipped over when I stood up from leaning over my little pond. Thank goodness I fell away from the pond, or that could have been very embarrassing, not to mention very traumatic for my poor fish!! I have a lot of congestion in my nose and my ears. I think my entire head is congested. I am having a terrible time with edema. I'm hoping that might have something to do with all of this congestion. I keep praying it will all eventually go away! So sorry to hear so many others are also having so much trouble with this too. My goodness, aren't we a mess? Neutral

Yes, better days must be ahead for us all!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Hmm not sure Empty Re: Hmm not sure

Post by Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum