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Been away too long - sorry!

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Been away too long - sorry!

Post by Tigerlily on Thu Aug 13, 2015 7:16 pm

Hi Everyone

I've been away for ages, I know.

It's been a bit of a bumpy ride with Addenbrookes calling in my PTH "remains" from the Hammersmith to examine before agreeing to the genetic testing for MEN1 (which they refused). FP told me the 3 glands he removed were hyperplastic and the fourth one that he left "appeared normal". But Addenbrookes finally said that it wasn't "the right type of hyperplasia" to indicate MEN1 testing, and anyway they saw no evidence of Primary Hyperparathyroidism either!!

FP wrote a very diplomatic letter to me (copied to all concerned) saying it defo was pHPT, and with the Hammersmith doing upwards of 230 PTH-ectomies annually their path lab should be well used to seeing its manifestations. But when I had a follow-up meeting with the Geneticist and Dr Helen Simpson who appears to "be" the PTH department at Addenbrookes, they said they would be disregarding his letter and standing behind the original diagnosis made by their consultant Dr Diana Wood - of secondary HPT due to Vit D deficiency. A scenario almost straight out of the Vitamin D pages of parathyroid.com !!

Poor FP has total patient fatigue with me now as I had to ask him so many questions about this, bless him.

What I'm struggling with now however is an increase in the facial/jaw swelling that was evident 6 months before the PTH surgery. I had hoped it would go away after the op and for 4 blessed months after surgery in December I felt wonderful. The scar healed beautifully and the area under my chin was so flat that I joked with Mr T-L that FP had given me a bonus face lift to boot!

Then at the end of April I noticed the swelling again at the angle of my jaw. And the lymph nodes there and under my chin are well up and painful. I've had an MRI and US of the area courtesy of the Oral-Maxillary Clinic who tell me there is nothing in the jawbone or the soft tissue. I myself can see some lumpy bits in the sub-mandibular US shots so I have yet to get to the bottom of what they are.

My frustrated GP has sent me to the Pain Clinic where I saw a wonderful doctor who prescribed some Linocaine-infused stick-ons that seem to help and is sending me some small electrodes for use with the TENS machine I have to use to get some relief from the aching pain in the jaw area. But all this is just masking the problem in my view.

Luckily my GP agreed to my request to be seen at the Head & Neck Clinic but of course that's at Addenbrookes as well (and not tille September) - so I expect they will take one look at my recent notes and dismiss me yet again as "that anxious patient".

The pain in/under my jaw radiates as a stiffness/spasm across the roof of my mouth and I'm now getting pains in my head on the same side. (Hello - Amanda! I think you've posted recently on this sort of scenario.) It feels as if something is sticking into my throat and I have trouble swallowing sometimes (mainly rice, or soft foods). I've also got a painful swollen area on the inside of my right elbow (same side), and a swelling behind each ankle that looks like "a second ankle" both sides.

It's looking like a lymph issue to me. All comments or suggestions welcome!

Something I'm trying to find out at the moment is if "sinus histiocytosis and paracortical expunction" is a normal finding in neck lymph nodes. The Hammersmith Histopathology report on the PTH glands removed at surgery described this finding in the two lymph nodes that were taken out along with the PTH glands. Needless to say, the Addenbrookes report noted no such thing, and didn't even mention the state of the lymph nodes.

So that's where I am at the moment, free of a lot of the pHPT symptoms I must say, but left with this jaw/neck pain to sort out, and as I had it (to a lesser degree) 6 months before the PTH surgery I don't feel that it can be down to scar tissue or the operation itself.

As I say - all thoughts and comments would be welcome.

Love from Tigerlily xxxx

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Re: Been away too long - sorry!

Post by Amanda Lynne on Thu Aug 13, 2015 7:38 pm

Hi Tigerlily
I'm so sorry you are going through all of this, it's so unfair that you are having to fight all the time (I do know how you feel) it's too stressful.
Anxious patient !!!!!! I'm not b****y well surprised, they would be anxious if they were going through what you are.
I'm sorry I can be of practical help with this but I'm sending lots of hugs to help you get through it. Keep fighting.
Lots of love Amanda xxxx
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Re: Been away too long - sorry!

Post by Tigerlily on Thu Aug 13, 2015 8:16 pm

Oh, thanks, Amanda - I love hugs!

So sorry to hear that you are having such aches and pains as well. Glad that the gastro consult is behind you (whatever it was he was saying ...) and hope you get some better answers soon.

If you can't get the thyroxine as a trial, you could always investigate "the glandular extracts". When I can find the contact details, I think there is a Dr Peatfield in Surrey with a website about using these instead of synthetic thyroxine. Might be worth checking it out.

Also, make sure you are not deficient in Selenium as a lot of thyroid function depends on your having a goodly supply.

Many Hugs back to you (and thoughts of The Ritz, cured or not!) - Love from Tigerlily xxxx

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Re: Been away too long - sorry!

Post by Hadleigh on Thu Aug 13, 2015 9:45 pm

Oh for whatnots sake, I just typed a long message and lost it

Now my battery is about to die so will have to do it again when I'm charged up, dratted tablet  Evil or Very Mad

Nelly
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Re: Been away too long - sorry!

Post by pilipala on Thu Aug 13, 2015 10:47 pm

Hi Tigerlily,

Isn't it bad enough we have to fight our own glands? And yet we have to fight the health system too. 

I know I totally sound like a 'me too' hypocondriac but I also get a stabbing pain on the left side of my head. Just back from the temple. It fortunately doesn't last long but it's very sharp. Only started this year and only every so often. But in exactly the same place.

One day we'll hopefully get some answers. Til then more hugs.

Love
Dee
xxx

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Re: Been away too long - sorry!

Post by Hadleigh on Thu Aug 13, 2015 11:48 pm

So what is going on with these head pains, I am getting the same thing, last 2 or 3 weeks either a headache or sudden stabbing pain affraid really getting tired of it.

Nelly
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Re: Been away too long - sorry!

Post by Amanda Lynne on Fri Aug 14, 2015 8:13 am

Nelly
I know how you are feeling, this stabbing pain is horrible and im sending sympathetic hugs to you. Xxxx
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Re: Been away too long - sorry!

Post by Lucycatnaps on Fri Aug 14, 2015 10:51 am

Hi everyone and me three!
I have been having the pain in my mastoid area just above my ears and tracking around to the back of my head for many years, it started in 2006 and radiates into my ear and makes the upper ear lobe feel like it has been boxed.  It comes and goes and I was told it was referred pain, although I found if I rubbed a small amount of steroid cream on my upper ear it would ease.  It was worse during menopause but then changed to a three day headache every month so my GP said it was hormonal.  Sometimes the top of my head is extremely sore as well, just brushing my hair is painful.  I did notice a pattern over the last year, the headache would wake me up around 4am, persist for 3 days despite trying ibuprofen, paracetamol and co-codamol, all they do is damp it down a bit and then on the third day it goes.  I went to my GP again this April as that time it lasted five days and I felt like my "stroke" was imminent.  He thinks they are migraine headaches ( I did have migraine in my teens and early twenties with aura but then they stopped), anyway he has given me Migard tablets.  Since then I skipped May and June but got a bad head again in July and the Migard only eased it for a day but it still came back again.  It also makes me feel very light headed and a bit spaced out so maybe it is migraine.  I wonder if it is related to my neck cervical area as that cracks a lot but I sympathise with you all as they are horrible.  I massage the area around my ear and sometimes that eases it.  
Amanda I hope your head feels a bit better this morning, and TigerLily I will write another post re your jaw as it may be shots in the dark but I wonder about a couple of things it might be worth looking at, you can discard if not relevant!
Hugs for everyone, Sue xx
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Re: Been away too long - sorry!

Post by Tigerlily on Fri Aug 14, 2015 11:01 am

So glad to hear I'm not alone in the head pain department - but sorry to hear that you all have it too.

I had the tempro-mandibular joint checked out as I was getting stabbing pains down the same side of the face as the jaw swelling that would have me almost jump off the sofa (not easy with your feet up!), but now the pain is more localised to the top right and sometimes top left head/skull area.

The neurologist I was referred to jumped on the fact that I had had migraine-type headaches as a child and into my 30's and 40's, but these have reduced somewhat since. She said the current problem was "atypical chronic migraine" which I felt was a bit of a cop-out, as I know what migraine-type headaches are, and this is not that.

Yes, it is intermittent, but quite sharp, and my cervical area cracks a lot - probably due to disc dehydration, osteophytes and bone cysts seen recently on an MRI at C5/C6 and C7/C8 (I wasn't expecting that!).

Thanks everyone for making me feel less alone with this - and I'd be happy to hear your thoughts on the jaw thing, Sue, as soon as you like!!

Love and Hugs to Everyone, Tigerlily xxxx

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Re: Been away too long - sorry!

Post by Lucycatnaps on Fri Aug 14, 2015 12:13 pm

Hi again,
Sorry Mr L is interrupting this morning, I am the gofer!  Re the migraine headache, mine is also nothing like what I had in my teens, I think it is a combo of hormones/dehydration or rather electrolyte imbalance due to raised calcium but they really are debilitating at times.

K here goes, as you know I have a neck lump on my left, initial scan showed a 1.8mm reactive lymph node done in Nov 13, there is also swelling above the gland.  I also had a neck MRI in Jan 14 which showed unspecific neck mass but that was it.  They concluded it was infection or inflammation.  I had a skin rash on both my wrists for three years prior which I was told was psoriasis which suddenly went on its own and then a year later at the start of all this decided to take residence in my mouth on my cheeks, it is auto immune and no cure but it tells me things are in turmoil in my immune system.  That was when they told me my calcium levels were raised and had been for years since 2006.  It was then that my thirsty phase started, the more I drank, the more I passed, yet still felt thirsty.  I think this electrolyte imbalance has caused a lot of symptoms plus the low Vitamin D as well.  They checked for diabetes but that was fine.  They took a biopsy of my mouth which blocked my salivary duct as it healed and made my mouth dryer.  I had pain down my throat and wondered about Eagles, I could feel my epiglottis and it was tender especially at the side.  I even had the lump in throat sensation which I knew was anxiety due to stressing and waiting long times for appts etc and my neck.  I had an MRI of my parotid as the exit was inflamed as well and that noted my Rt Tonsil was much bigger than my Lt, also I had an antrochoanal polyp in my left maxillary sinus but they would do nothing. I had my tonsils removed when I was 9?  So last summer I saw ENT snd he said that sometimes they grow back and in my case the Right side had grown again, told him the pain down the throat , neck lump etc and he did a very rough and quick up down nose with camera and said everything was fine, would not operate and my calcium was "not that high" and bye bye.  This was before I was told it was FHH.  I still had the pain down my throat and I noticed I kept getting white spots on my small rt tonsil, there is nothing on the left to see.  I have to massage my left submandibular gland as that swells up at times and thought that was maybe connected to my neck lump but oral guy said no.  So I have a dry mouth especially at night, I wake up unable to breathe through my nose as it is totally blocked and I sound like I am full of cold but it is sinuses swollen.  It goes into my eustachian tubes as well and makes my ear ache at times or tinnitus or feel blocked.  
So I kept finding these white spots on my tonsil and found out they are tonsil stones, never had them before and they are gross, did some online research and found out they are a mix of food and calcium that gets trapped in tonsil crypts and build up.  A few weeks later I found a white spot behind the anterior pillar where my left tonsil should be and condensed version is over three days I managed to remove a large tonsil stone from a tiny sinus/crypt.  The pain down my throat has eased and the swelling in my neck has halved.  I am now checking every week and removing them as they appear.  I had never heard of them before but I suspect my saliva is full of calcium.  
The other thing I came across was a bacteriall infection that causes a lumpy jaw called Actinomyces, it is an anaerobic bacteria and can bury deep into tissues if conditions are right, it is naturally found in our mouths and is an opportunistic infection but it does cause abscesses.
Sorry for waffling so much and I know it probably isn't relevant but I was surprised at how much stuff was down where my tonsil should have been, I used a cotton bud, and lots of gagging and because it was below and behind anterior pillar not easily seen.  I just thought it may be worth checking especially as I have seen ENT twice and no-one found it.  I was going to show the oral guy last week the small sinus but it was a locum for a locum and he was convinced I have Sjogrens despite me telling him I had all that work up last Sept and it was negative.
Take care and I hope you find some answers soon,
Hugs Sue xx
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Re: Been away too long - sorry!

Post by Tigerlily on Fri Aug 14, 2015 12:23 pm

Sue - you have no idea how useful this is to me!

I need to read it over again several times, but I'm so grateful that you took the time to write it all out. I know what a drag that is when you don't feel at all well.

I came across the tonsil connection only last week.I had mine out at 16 - and how gross was it that the boyfriend came and visited me in hospital afterwards - probably put the poor off girls for life!

My tonsils used to fill up with the same type of white grunge as well, which is why the decision was taken to have them removed.

This is all pointing to an auto-immune root to me at the moment, esp as my Anti-TPO antibodies are around 1003 (range is 0-60, I believe).

And I came across Sjogrens as a possibility last week as well. It can have quite a complicated symptom-picture, not just dry eyes, as I understand it.

Off now to check out Actinomyces - thanks for that. I have also noticed that Giardia Lamblia crops up a lot in the research I've been doing, in case that is of any help to you. I might ask my GP to check and see if I am producing antibodies to this as well. 

I'll be back as soon as I've re-read your post, Sue - thank you so much for making the effort to post it.

Love and GBH (Great Big Hugs) from Tigerlily xxxx

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Re: Been away too long - sorry!

Post by Hadleigh on Sat Aug 15, 2015 8:21 am

Tigerlily high Tpo is commonly autoimmune thyroiditis ( Hashimotos) but can be seen in Sjogrens, Lupus, Rheumatoid Arthritis and Pernicious Anemia.
Nelly
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Re: Been away too long - sorry!

Post by Tigerlily on Sat Aug 15, 2015 6:02 pm

Thanks, Nelly - I do have Hashi's, so I hope it's just from that. Lupus has cropped up a lot in my reading lately as well as RA. I had hoped the Rheumy would have been able to distinguish between RA, Osteo-Arthritis and pHPT bone problems, but he seemed disinclined to - saying it was all "normal" degenerative changes.

I appreciate your input, Nelly, as always.

Love to you and Edwin, from Tigerlily xxxx

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Re: Been away too long - sorry!

Post by Hadleigh on Sat Aug 15, 2015 7:19 pm

As antibodies go up and down with Hashi your current level most likely  just indicates an active phase which will pass, hopefully that's it and nothing new going on.

Nelly
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Re: Been away too long - sorry!

Post by Tigerlily on Sat Aug 15, 2015 7:22 pm

Yes, hope so, Nelly - hope you are both having a restful weekend - Love from Tigerlily xxxx

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