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On the fringe

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On the fringe

Post by Lucycatnaps on Tue Aug 04, 2015 2:24 pm

Hi to everyone as well.
I have not been around since being told I have FHH in March as I felt I needed time to try and function and adapt my life to fit in with all my aches and pains that I am living with.  Once labelled with FHH it is very difficult to get anyone to take you seriously as FHH is supposedly benign and surgery is never going to be an option for me.  I had a nasty bout of costochondritis from coughing back in March which took a long while to settle and my shoulder and leg pain has continued.  I saw my endo in April for a courtesy consultation after getting my genetic results and basically he said he was discharging me as they do nothing for FHH, not even annual blood tests but as I had not been given a sestamibi and I still have my "neck lump" on the left which I am told is a reactive lymph node, now coming up 2 years, he would discuss with radiology to see if they would ok it.  I also asked if I could trial Cinacalcet as a Danish study showed it improved quality of life but apparently it is not licensed here for FHH so the answer was no.  I had my scan on June 2nd and finally got my results today.  He is managing me via mail it seems but it is better than nothing.  He increased my Thyroxine to 100mcg daily and I still feel tired and achy and no different but he is against giving me T3.  My bloods show a drop in TSH to 0.99 but my FT4 is still low in range at 12.9

My sestamibi is negative, shows no evidence of parathyroid adenoma but as he puts it,

On a separate note they noticed an incidental discrepancy on the right side of my neck below the thyroid gland.  It could represent ectopic thyroid tissue and they are going to organise a further radio-iodine thyroid scan to look into this and to await an appointment.  He suggests I carry on my thyroid dose and await the results of this next scan before making any further changes to my thyroxine.  

So am plodding on, still feel blah, developed a rough white spot on my gum and seeing orals next week, been waiting since May for this as well.  My mother has been having a rough time as well, she has fallen twice in the last couple of weeks and now has a lifeline pendant but she is still fiercely independent, had a consult with her GP last week for pain management etc .

On a brighter note, we have a new kitten, we think she was dumped and I found her in my hedge, she is a real sweetie and now clear of her unwelcome visitors and has started her jabs.  I wish I had a few of her beans!  Had my son and new wife to stay for a week so it has been busy.

Am catching up on everyones news and am sorry to read that you are still going through the mill Edwin, I hope things improve soon. Hope everyone is enjoying the better weather whilst it lasts and hugs to all.
Sue xx

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Re: On the fringe

Post by Tigerlily on Wed Aug 05, 2015 8:09 am

Hi Sue - so lovely to hear from you again!! I've been absent from the forum myself for some time, but am getting myself back together again after a few ups and downs. I keep promising to post here on all this and then something else crops up.

So glad to hear that something has shown up on the US (sad though that we have to rejoice over these things) and someone was smart enough to notice it. I wonder if there's an outside chance that it could be an ectopic PTH gland? I think the jury is still out as to whether you can have FHH and pHPT - it has been heard of though.

I read recently that costochondritis can crop up often with FHH - it must have been painful though so I hope it's cleared up for you now.

I sympathise about the neck lump. I have something similar and have had it since May 2014. A reactive lymph node was also seen in the area on one of my US scans, and you have to wonder exactly what it is reacting to. I still have the swelling in the side of my face just above it but am hoping to get it clarified sooner rather than later.

I hope you can get the white spot checked out soon as well. Do let us know how things progress.

A new kitten-cat will help most things, in my view - enjoy her, and give her a stroke for me!

Keep us posted, Sue, we don't want to lose you.

Love from Tigerlily (and Tiger and Lily Cats) xxxx


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