Update on me

Mondays blood test showed pth has just crept in to range, calcium 2.49, phosphate high normal.

Saw Mr. M this afternoon and he breathed a sigh of relief as he was worried about my very hypop results post op. He thinks i have only 1 parathyroid left so it should be ok. I am to have another blood test in 2 weeks and that should be it, he has signed me off. However he is referring me to a Nephro Con for the kidney stone, he agreed it should be dealt with as hpth will have affected it since last years scan. So I am still tied to Southmead flipping hospital, I could have gone to a nearer hosp but I prefer he refers me to one of his chums.

So that is that, I still  don’t feel well as my thyroid levels have been thrown out of whack but he thinks they should stabilise in a few more weeks, I still have a very puffy neck and some annoying pain, agony to sneeze ! swallowing and voice are not quite right but he said it will take time to recover.

This is not an easy ride, I have had major abdo surgery in the past which was much easier to get over and because this messes with numerous hormones and electrolytes it can cause a big shift in levels.

So im yet to be convinced this will make me feel any better but its done.

Battery about to die so will go before I lose this post.

Nelly

Hi Nelly, glad to hear you're ok and although it's a pain to have to go to and from Southmead, they've been good to you, so perhaps they should be the ones to sort out your kidney stone. Good luck with that. Hopefully your thyroid levels will sort themselves out soon so you can feel better.

Your calcium level is better than mine   Mine's at 2.29 so perhaps I should drink some more milk. I'm having trouble with my white blood cells which are low. Apparently I have neutropenia so whilst I carry on feeling like a piece of crap, the docs are still agreeing that there's something wrong but no one knows what it is and no one makes an attempt to fix me, but instead keep taking blood tests and urine tests and what-have-you. I'm surprised I have any veins left for them to trap my blood I've had so many blood tests. Honestly, I preferred being pre-op pHPT: I felt better then than I do now.

I'm sorry your neck is so painful. Mine looks ok and the swelling has mostly disappeared. Even the evil bruise below the scar has faded away. There's a very numb bit to the left of the scar and a very sore bit to the right side but it looks to have healed well and I'm putting bio oil on it so hopefully you should end up hardly seeing it. 

Take care of yourself and keep plodding onwards.

Love and hugs

Brigitte xxxx

Brigitte i also felt better pre op than i do now.

 It does sound like you might need some calcium and probably some Alfacalidol to help your absorption. Do you know what your pth is ? If its below the range then there is a problem, your remaining paras may still be sleeping so you need help while they are waking up.

My calcium could crash again but i should hopefully be able to spot the signs and i have the dreaded calcium supps on hand if needs be.

I really hope your team can come to some decision on what ails you very soon, you must be so peed off.

Nelly

I'm very sorry you are both struggling so badly with recovery. No, it is not an easy journey, is it? We would like to hope the struggling is over once we have the surgery, but for so many of us it is not. I do hope you both feel better very soon! Chins up! Better days are ahead!!

Audrey

Hi Nelly,
Just wanted to ask how are you doing now?  I sincerely hope that things are improving and that you are feeling a whole lot better as each day goes by.  I do understand that it can take a while for everything to normalise especially when thyroid is involved on top as well.  Anyway I hope things are getting better for you now.
Take care, Sue

Hi Sue

I'm doing ok thanks but I can't say I feel hugely different to how i was pre op. I have another calcium and pth test next week so will know more after that. I do still get tingles but I think its probably more to do with my stupid body not liking normal calcium levels rather than low calcium.

My GP is being her usual unhelpful self regarding thyroid being whacko, she thinks because I am still in range everything is dandy, I politely told her that I know where my levels have to be and they are not there right now, will see what next test shows then demand an increase if needs be.

How are you doing ? 

Nelly

Hi Nelly,
I know how that goes re Thyroxine levels, had that battle a few years back but always got told my bloods were fine and therefore no change in dose.  I managed to get mine increased when the GP left and the new one was ahem a bit muddled.  Good luck with your tests next week.
I am up and down, good days and bad, get tired easily.  Frustrated that things do not seem to be moving forward etc.
I had the appt mid Sept with the horrible locum who basically said I had FHH, to come back in six months to clinic and no mention of blood tests in the mean time. He refused to work out my CCCR but agreed to refer me to Mr P at the Hammersmith.  That letter was sent at the end of Sept and is a very poorly written referral.  I did get a copy from my GP.  I have heard nothing from Hammersmith.  I also am still waiting for my next appointment for endo clinic here but maybe they are still doing the you will get it just before it is time to come.  
I did get a phone call from the nice endo a week ago saying he has looked at my test results and feels they are suggestive of HPTH and not FHH.  He has sent me a blood form to redo blood tests at the beginning of Nov when I have taken the D for 3 months.  He said it was unfortunate that I was seen by the locum and also that the appt was not when he requested it.  He feels that as my mothers bloods and urine calciums were normal prior to her osteo treatment that FHH is unlikely.  
I have tried contacting the Hammersmith both by phone and email and as yet have heard nothing, either answerphone all the time or no response to emails.
I have an appt with the gastro tomorrow re the reflux that has increased over the last year, it is becoming a real problem and GP says they will probably do a gastroscopy.  I am taking Zantac which does help but I still feel a bit nauseous at times.
I saw the oral locum two weeks ago and got the lip biopsy results which is negative for Sjogrens.  He says the MRI shows a polyp in my L maxillary sinus but they will leave it alone, even though it does give me symptoms. He discharged me from his care and 4 days later my R submandibular gland all swelled and the duct blocked so now hace problems on both sides.  I think it is calcium silt clogging the duct, lots of fluids and massage and finally it went down.  My mouth is getting bad again with the OLP, it has been very sore and I think my D levels are falling now as we head  towards Winter despite taking the low dose D.  I still have my neck swelling but it does seem a tad smaller,  it is still showing as a reactive lymph node.  My tongue is starting to feel very dry again and developing lots of deep fissures and I am drinking lots all the time!  I think the anxiety has been better the last couple of months but I have days when I feel really frustrated that a year on and apart from blood and urine tests, very little has happened.  I just feel like I am left hanging.
Thanks for asking and hugs back
Sue

Blimey Sue you have so many things going on, no wonder you are cheesed off with the lack of action, it becomes so tiring trying to keep up with it all, been there and got the t-shirt 

I have a few other non hpth related health probs going on but my GP can only cope with one problem at a time so until the kidney stone stuff is sorted I have to put up with the other things. I think she is a bit miffed that my para surgeon has referred me to a kidney bod as her opinion was it didn't need sorting, surgeon said otherwise !!

I need to see my private endo sometime so will no doubt be upsetting GP once again 

Good luck with your Gastro appt, hopefully you will get the reflux sorted and will be able to cross that off your list.
Keep us posted on any progress, hang in there Sue 

Nelly

I am sorry Neely that your still feeling unwell. If your calcium is good [I think I remember it was] maybe backing off any calcium supplement may help. You don't have to listen to me as I am still pre op. lol

Sue what made your doc lean towards phpt instead of Fhh? My doc is off the FHH bandwagon with me and I think since my pth on my labs in May were 99  that US numbers, of course he says it is always in the back of his mind. I guess I am curious of what changes there mind. I know they usually just say labs now I wonder which blood test are they looking at that would change there mind. Hope that makes sense. xxxxx Kathi

I'm sorry your GP isn't wonderfully helpful and understanding,  Nelly, but it seems they generally aren't. I'm also sorry you didn't get a miracle cure along with the parathyroid removal, but perhaps you and I need to wait a bit longer or something. Maybe one day we will wake up and feel so wonderful we will be overwhelmed! There's always hope, but it just hasn't happened yet. 

Sue, I'm so sorry you're going through all that. Surely if FHH was ever suspected, you should have been tested for it so it! It's ridiculous how you have been messed around. I hope you get referred to FP and find out what's happening soon. 

Love and many hugs 

Brigitte xxxx

Hi Brigitte

I was just replying on your other post and blinking tablet deleted it all Arghhhhhh so will try again on here.

I'm sorry you still feel rubbish as well, from what I have researched it is not unusual for things to take a long time to settle down and our bodies don't like the lower calcium so all the hormones and electrolytes have to adjust. I have good and bad days, today being a crappy bad day and to be honest I don't know what it is to feel well as I have had chronic stuff going on since I was about 12

This is all made so much harder when our doctors have no clue and can't/won't help, I think I have hit a brick wall with my GP, I seem to have too many things going on for her to cope with so once again I might have to bypass her and go straight to a Consultant which is what I did with the pth stuff, she is still miffed about that but tough toodles.

Have you thought about taking some vitd and sticking to a high calcium diet for a while ? might just give your calcium levels a kick start. My calcium was 2.42 last time so bang in the middle but my surgeon still advised extra milk and yogs (yuk) to keep calcium up as it can take a dive anytime after surgery. 

I hope you get some answers soon Brigitte it is so annoying and disappointing to be post op but no better. Hopefully you will get there very soon

Nelly

Thanks for your input Nelly. Yes, I have made sure I'm on a high calcium diet and always take Vit D. The Endo wants to see how the Vit D adjusts over time since I've had problems with it before and he's hoping that it was down to the HPT rather than being affected by an anti epileptic. There are far too many things which may be linked to that already, or linked to the other disease also. Since my GP doesn't know what to do any more he's hoping the hospital will take over. We shall see I suppose. I've also looked in to post op recovery and realised that there's a lot to get settled in the way of hormones and electrolytes etc. Whenever I'm unwell, my headaches get worse as well which doesn't improve my outlook on the world. 

I'm sorry you're having another bad day, but don't give up hope. Life isn't bad all the time (I hope)! 

Love and hugs 

Brigitte xxxx

Hi Nelly,
Bad crap days are the pits, the only consolation is that maybe tomorrow will be better.  This disease does horrible things to our bodies but the fact is none of it shows.  I get a lot of "well you look alright" or "If it is that bad surely they would do something?"  It is no fun and now I don't talk about it to friends, instead I have all of you to whine too.  I have been pretty well all my life apart from a thyroiditis after ds was born, then perimeno hit and everything went pear shaped.
I do have a good GP, at least he listens and takes me seriously but he is not a specialist and when I ask questions he often says he doesn't know the answer.  If it wasn't for him redoing all my bloods in January then I would be still ignorant to the fact that for 8 years my calciums have been raised whilst under the so called care of Rheumatology.  I have lost faith in the locums that wash up in the local hospital, here today gone tomorrow etc so no continuity of care. 
How are your new wheels???  It is a beautiful day here, lots of sunshine and I have wallflowers to plant then go for my gastro appt.  I hope you are feeling a little better now but wanted to give a gentle hug  and say I understand.
Hugs from Sue x

Hi Brigitte,
I really do think that it can take a lot longer to feel more normal than we are led to believe.  I suspect it can take a while for the remaining para's to wake up and start working again.  I think the ones that immediately feel great post-op are the minority and that other conditions/medications have an impact as well.  I do so wish that both you and Nelly will start feeling the benefits, that is what I pray for and that it is sooner rather than later.
A gentle hug for you too,
Sue x

Hi nelly I hope your doing okay! I am just wondering what a comfortable calcium level is? Do you think it is in in the midle of the range say 2.4 or closer to higher normal? Just wondering at what levels people feel comfortable at
rachel x

Anywhere in the range is considered normal but where in the range you feel ok at is I think individual. In theory you should feel ok as long as your calcium and pth are within that range and working as they should, its only when one or both go out of range that symptoms can happen. Not everyone will get symptoms even with really whacko levels yet others with only slightly off levels will.

My last calcium was 2.49 and Mr M said it was perfect, my pth was 1.7 so still a little low but just in range. I don't feel great but I'm used to higher levels so will take time to adjust.

As with thyroid we all need different levels, so I know I need my tsh to be well under 1 but someone else might need theirs to be 1 or a little above to feel well. This is why it is so difficult to get the doses right as doctors will insist on going by the numbers.

How are you getting on with the Cinacalcet ?

Nelly

That's really interesting.  Like you said I guess everyone is slightly different as an individual. Glad Mr M has given you the all clear. 
I'm still I think having problems with my thyroid. I've even upped my dose too 100mg as I know 50 wasn't enough. I just don't feel with it like everything is passing me by around me. Almost in a daydream. 
I had quite a low white blood cell count but i guess this ties in with any auto immune problem. I'm starting to wonder if I will ever feel okay again haha!!!
As for the cinacalcet I've only been taking it a few days and have had no side effects. I can't figure out how I feel and what's going on I'm so confused. I have a 28 day supply of cinacalcet but my next appointment isn't until the end of November so I will have run out. 
I'm guessing that a person with normal calcium range wouldn't do too well on cinacalcet and it could go to low. So I'm keeping an eye out for symptoms but i struggle to differentiate between thyroid symptoms.

2.49 sounds good!  But like you said your body ma have got used to and adjusted to the higher calcium levels. 
Rachel x

Rachel if you have gone from 50 to 100mcg thyroxine in one go it may be too much, usually we only increase or decrease by 25mcg at a time or it can be too big a jump for your body to handle, this could be giving you symptoms. You might want to cut back to 75mcg for a 4-6 weeks, only a suggestion so of course up to you.

Also trying to change to many things at once can be a problem so upping your thyroxine as well as starting the Cinacalcet is possibly confusing your body but I do think with your thyroid levels where they are you will still be getting thyroid symptoms so you are in a difficult situation, can you run it by your Endo as going it alone is not easy and you will need a thyroid blood test at some stage if you change your dose.

Nelly

Meant to say the spaced out daydream feeling is definitely a classic thyroid symptom.

Thanks Nelly I'm just so confused at the moment to what's going on. Think like your said my body is just adjusting or trying to adjust to things. 
I may go back to my gp as my endo is away for 10 days and I worry about bothering her alot. 
I'm trying too look out for low calcium signs also but don't want to get them confused with hypothyroid symptoms. 

I've also read an interesting article on thyroid and calcitonin  www.yourhormones.info/hormones/calcitonin.asp

Rachel x

That link isn't working but I'll try and look it up.

I would think the only low calcium signs you might get would be tingling fingers as the other symptoms are only with severe calcium deficiency and tingling wouldn't be connected with thyroid unless you had a carpal tunnel problem which you would know about. Lots of people with low calcium don't even know it so don't assume you will have raging symptoms if you drop lower, you never know you might feel amazing when it goes down

My advice would be to call your Endos sec and see if you can get an appt as soon as she's back to talk all this through, if your GP is typical of most GP's this will be out of his/her comfort zone so won't be much use

Nelly

Very true, my gp isn't very bothered by anything even when my tsh was 9.... i go from feeling completely strange to okay through out the day. 
I wonder how long the cinacalcet will take to have effect and if I feel any difference. In the mean time I'm just going to stick to the 50mg like your said my body is probably thinking whats going on! Thanks for the advice I really appreciate it. I need to be less impatient but I'm desperate to know what's going on. My pth levels make make me question a few things, but I've heard of cases where it's in the normal range. 
It's interesting how some people feel no different at higher calcium levels and others feel terrible.
anyway I hope your doing okay and gradually things will settle 
rachel x