Thank you to everyone who helped me with my last post on this board regarding DNR. I’m relieved to say that my father was released and is possibly back on track to regain some of the weight lost at hospital. Still waiting to hear if it’s lymphoma.
As for me I am feeling kinda kicked down this week. My GP is not only angling to stop B12, but also HRT. Helpfully though has arranged an ultrasound for my neck. NHS wasn’t available for months apparently so had a private one in London this week only to discover the NHS one is due next week.
So it was a surprise to find I have three solid vascular parathyroid/thyroid nodules at grade U3. Its the first tangible evidence after 2.5 years of seizures that I self manage with calcium. It also explains my increasing painful neck. I’ve already been informed that a FNA is required even though small but with the comment that NHS won’t until it becomes stage 4 or 5. I probably will have to wait for growth regardless of symptoms.
I had hoped to get a review by a private endocrinologist just because my situation is rare. As we know in the PA community rarity is a real problem because things require specialist knowledge. In my case a 5 to 15% chance of malignancy of parathyroid (not great news) Sadly just as I was thinking my other half is in work and it’s possible to afford one or two appointments we received the news of job loss.
It’s a really tough time at the moment with my parents and husband in difficulties I can’t add to the worries just now by letting them know. Also it’s a quiet time for me before the various reactions possible with this kind of news.
If anyone else has had a similar situation of not knowing and likely to be put on watchful wait while increasing symptoms I would love to hear how you coped with it? I know it is not PA but the community is familiar with the NHS responses being less than helpful to rare things.
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RoseFlowerDew
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Is it any wonder you feel kicked with so much going on ? Lets hope your father gets the all clear. My Drs ripped me off my HRT years ago due to my having a sticky blood condition. I felt great when on HRT but they wouldn't listen and took me off due to my Aps.
Now regarding your Endo and your noduals, providing they are not malignant and not causing you issues they are best left alone at this stage. Have they checked your vit D3 ? It's one hell of a burden to carry this on your shoulders.
I have a rare parathyroid issue ( not surgical but genetic ) and as you rightly say it's not easy to get the specialised care needed. I used to attend the London hospitals for my care but not well enough to travel the distance anymore. Does your Endo have specialist nurses you can contact if necassary - or do they even still exist ? The NHS is offering very little care now days and everything seems to be a battle.
Insist they leave your B12 in place and tell them you will be very ill without it and to remove both your HRT and B12 would be putting you at risk - be firm if you can find the strength to do so.
As for your hubby lets hope he steps into another position soon. I shouldn't think he is feeling too great himself. Such a lot of stress for you all and all I can offer is a warm friendly hug. 🤗 💐
I have just reread your post - your self medicating with calcium ! Has your endo not prescribed calcitriol ? You need your D3 to be able to absorb the calcium. Seizures where an obvious sign something was wrong and find it hard to believe the conection to your parathyroids wasn't picked up on before now - saying that nothing surprises me these days. The Aps simply adds to our complicated picture.
No wonder you feel overwhelmed , I felt overwhelmed too reading your post. But you have shared with us and we are all here to support you. This forum supports me and knows more about me and my PA issues than those around me!!!
You sound like me in some ways, a carer by nature it would seem, so definitely time to make some time for self care. I have had to do the same as I care for my mum who now lives with us.
I find mental boxes for each stress helpful - I mentally label them and open and close the lid. When an unwanted stress creeps into my thought I pop it back in its box! Amazingly it tends to work. 😂😂
Regards to your care I would point out to GP that you are a carer for your dad and also as there is so much on your plate at the moment, ask to postpone changes to B12 and HRT until you are better placed to discuss and cope with any consequences. I hope you have a GP you can talk to. “Postponing “ buys you time and should keep your GP on side as you are not disagreeing as such … that comes later when you are in a better position!
I suspect Hubby’s situation will produce a silver lining - once over the shock, he will probably find rewarding opportunities as mature, knowledgeable and committed staff are sought after - but it is a numbers game so his temporary job will be applying for jobs - I have just helped my son and daughter do the same and it’s hard work but rewarding.
Regarding your neck - I would give you a medal 🏅 as you have been amazing and the self help seems to be working. I would keep a diary of your neck symptoms, activity treatment etc including any topical measures you may try. Take this info to your appointment and it almost certainly will help you make best use of that first long awaited appointment - I have always done this and the consultants have always seized on the info. It will also help you track what’s happening as it is so easy to forget and I use my diary to look back and often spot patterns that I use going forward
Finally, take time every day for only you time - even if it’s a cuppa sitting quietly where you feel peaceful and watch and listen - that’s my meditation if you like - I have watched flies, spiders, birds and more recently one of my houseplants which “talks” by constantly making little leaf movements!! Every day too do something mindful with hubby - I say mindful as it’s not going out, or doing something together at an agreed time as I find that doesn’t work. I just make him a cuppa and go find him and just be there 100% for him for 10 mins. Sometimes he talks, sometimes he just asks me things and sometimes we just spend the time in silence. But it’s our time.
You are a strong woman and you will get through this. 🤗🤗🤗 and we are here!
This may not be a RoseFlowerDew but maybe a close relative.
Oh that is defiantly a tough time you are going through. I really can't help much on your condition as I've no experience there or dealing with NHS as I'm in the US.
I do LOVE what Wwwdot said about spending time with yourself in nature. During my very tough times these past few years I've found it super helpful to just go sit in my backyard very early in the morning just before the birds start singing and meditate. Lol I've never meditated before in my life before I was ill with PA and it sort of sounds funny for me to be suggesting that to someone else. But I find great solace in spending this time with myself and just reflecting. I too sort of commune with nature and its so interesting how we humans have disconnected ourselves from the intricacies of what's going on around us. So maybe try that, sit quietly and as Wwwdot said just observe nature, the bees, the ants, and spiders, the birds, the leaves blowing in the wind. That always helps calm me and make me ready for the tough challenging things I have to face that day.
How wonderful you have these special restorative times. Sometimes my kids come up to me and ask what are you doing mum? And I just say I am just being. Sometimes they come sit with me and “be” too - no words just two people being! We must look odd because sometimes someone will come along and ask have we fallen out as we sit in silence!! 🤗🤗🤗
Beautiful RexZ. Nature is the best medicine. Infact I have not slept all night and just came in from listening to the birds and smelling the cool morning air. It is so healing. And I do it barefoot so I can feel the earth on my feet. (What I am still able to feel) I'm sorry for your very difficult time recently too. If others only knew all of our silent battles just to survive or even get through one day, they would not believe it. 🦋
I am so very sorry that you're going through so much. It is so hard to keep a positive attitude during times like this when so many major things are coming at you at one time. These aren't tiny little things. They're pretty significant and they could really wear you down. So maybe you could lean on your loved ones a little bit. You can't carry the whole burden yourself. If you can handle it, they can handle it, and together you could handle it all. You're not well enough to be taking on such a burden by yourself. You need to have support and loved ones around you. If you can't or don't want to burden your dad or your husband, maybe you could find a friend or counselor you can unburden yourself too and find support.
I wish you all the best and remember you might have a 5 to 15% chance that it's cancer but you have a 85% to 95% chance that it's not. 🦋 Sending hugs.
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Need a rant feeling fed up
UPDATE ON 'FROSTY' ENDOCRINOLOGIST & GP
Feel sick and dizzy!!
Update on blood test - sorry long post
Update on Visit to Doctor
