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

Long time away

Page 4 of 11 Previous  1, 2, 3, 4, 5 ... 9, 10, 11  Next

View previous topic View next topic Go down

Long time away

Post by Amanda Lynne on Tue May 19, 2015 9:13 am

First topic message reminder :

Hi All
I'm afraid I have been away from the forum for quite a while, I've been feeling really quite unwell and not able to contribute. I'm sorry I've missed all your happenings and it will take me a while to catch up. I do know Nancy has had her op, well done Nancy hope you are recovering now, sending you much love.
I hope any other members who have had their ops while I've been absent are all doing fine and enjoying their newly found health.
I'm still in limbo land rheumy is desperate to put me on autoimmune treatment but as none of my blood tests have shown anything remotely inflammatory, every test done 3 x and nothing, whereas when I had vasculitis 19 years ago it was showing up on every test done and then cleared completely. I'm reluctant to agree at this stage.
I myself am querying possible Thyroid, my Endo  so let me give you guys my symptoms and see If it rings any bells, sorry it's quite a long list.
Extreme tiredness
Aching joints- hips, knees, feet, hands, neck, lower back
Stiff muscles
Sore eyes
Dry skin
Blotchy/reddish skin
Sore edge of heels so painful I can't rest on it at night
Burning feet.
Feel like death in morning
Palpitations 
Brain fog
Thinning eyebrows
Flakey nails
Headaches
On off blurry vision
Feel cold most of the time
I'm sorry it's not parathyroid related but since that operation I've actually got worse not better and as they have ruled out pth causing these symptoms I'm struggling with a diagnosis. Everyone is adamant FHH is not the problem.
I have had one low T4 test but was told as it didn't show again that this was just a one off.
Thanks in advance for any help, I'm at my wits end.
Love Amanda xxxx


Last edited by Amanda Lynne on Tue May 19, 2015 9:14 am; edited 1 time in total (Reason for editing : forgot something x)
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down


Re: Long time away

Post by Amanda Lynne on Wed Jun 10, 2015 9:13 am

Received letter from Endo.....
She says all bloods done in Jan 15 are within range also thyroid antibodies done in Sept 14 were normal.
She says if eye problems were related to thyroid this would be due to antibodies affecting thyroid and eyes and a trial of thyroxine would not help eyes she would not advise giving thyroxine unless thyroid function indicates under active thyroid.
I've got blood test of thyroid, TSH receptor antibodies & thyroid antibodies so she is being thorough but has said if negative it's not down to thyroid.
Last blood results from her are.
TSH 3.19
FT4 11.6
FT3 4

Sept 14
Thyroid peroxidase <33
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Wed Jun 10, 2015 9:43 am

Your results still show a problem.

There was a study done by the American Thyroid Association that found 5% of patients diagnosed with Hashimotos Thyroiditis had negative antibodies so were classed as having a milder form of thyroid disease where antibodies were to low to show on tests.

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-7-issue-9/vol-7-issue-9-p-10-11/

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Admin on Wed Jun 10, 2015 11:14 am

Hi Amanda

To anyone that understands these things, your TSH and FT4 resuilts clearly show that you have an underactive thyroid.

Unless you can find a sympathetic GP, you may have to consider going private.
If so, this is a good place to start: http://www.thyroiduk.org.uk/tuk/diagnosis/private_doctors.html
avatar
Admin
Admin

Posts : 435
Join date : 2014-03-29
Age : 66
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Wed Jun 10, 2015 11:36 am

Thank you both so much, I definitely do not have a sympathetic GP !!!! I'll get bloods done and I see Endo on 16/7/15 so if I don't get any help from her ( which is very unlikely) I will definitely go private. I can't just pretend I'm well when I really am not.
If anyone can suggest a private Endo who really knows what they are doing I'm open to suggestions and I will look on thyroid UK.
I know it's another symptom whic may not be related but for the last 3-4 weeks I've had a sore/twingy pain in gland under jaw and front of throat. I thought it was a sore throat but it's not come to anything and hasn't gone away.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sat Jun 20, 2015 1:43 pm

Hi Nelly & Edwin
I'm picking your brains again.
I've got a copy of all my bloods from Endo and have noticed a raised haematocrit !!!
Range 0.315 - 0.44
28/7/14 - 0.41
4/9/14   - 0.42
9/1/15   - 0.45

I'm presuming that having the ferritin in Dec14 has pushed it over the level it should be or maybe I'm wrong. Do you know any connection between this and my sudden sore eyes/sore tendons etc in feet. 
I've got more bloods to do before I see Endo so I presume this will be done in full blood count. I've tried to look up to see symptoms of high haematocrit but can't find anything really.
Thanks for your help.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sat Jun 20, 2015 2:09 pm

Hi Amanda

Don't really know anything about this but from what we can see on the link below the most likely cause would be dehydration, obviously something to keep an eye on
http://labtestsonline.org.uk/understanding/analytes/pcv/tab/test

Another site says many times there is no obvious cause which is not what we want to hear but sadly often the case, my high liver function results remain a mystery after all these years Rolling Eyes

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sat Jun 20, 2015 2:17 pm

Thanks Nelly
Yes I guessed it may be another mystery problem, I've looked back on older tests and not one is raised. I'm going to make appt with GP (not the one I recently saw) just to ask again if they can join the dots up between all of my results and I will ask if this could have any side affects as its timing along with sudden sore eyes, does seem a bit of a coincidence. I'll probably be told no but I'll ask anyway.
I had rheumy appt booked for end of Aug as requested by Rheumy so it came just after Gastro appt but today I've got letter in post saying sorry it's been moved to 16th December !!!! I'm going to have to try to get it brought forward again, such a pain.
A xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sat Jun 20, 2015 2:58 pm

Know what you mean about appts Amanda, my yearly gastro appt was due in May, got an appt in June but had to change it so now end of Aug but no doubt that will change again and with all Edwin's stuff going on I  probably won't make it anyway. Full time job keeping track of what is when and where Rolling Eyes

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sun Jun 21, 2015 8:31 am

A post on the thyroid forum came about raised haematocrit and the gist of the replies was that in 95% of cases it is a faulty gene, the rest are cancers, sleep apnoea or dehydration.

The key is how high the levels are, if very high over range there could be a problem but if only high in range or slightly over it is almost certainly dehydration, which comes in the list of hypot symptoms, for some.

Hope that helps

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sun Jun 21, 2015 9:06 am

Thanks Nelly
It is only just slightly over range so I could well be dehydration but I'm drinking as much water as I can without having to visit the loo every 10 mins. Not sure what else I can do.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sun Jun 21, 2015 10:00 am

I honestly wouldn't worry about it Amanda as your levels are still in the range and the one just outside could be due to many things like how the blood was taken, transported, stored, the way it was tested and so on, I doubt your doc will be worried. As I have found out from experience levels of most things have to be way out and for a fair amount of time before they want to investigate and even then the chances are nothing shows.

I always have several results on the top edge or over, some have been investigated some not but as long as they remain more or less stable at whatever level the docs don't worry, my ALK and GGT are way over range, ALK by hundreds but it has stayed about the same for 10+ years so gastro con is happy to ignore.

Don't go overboard on drinking or you may mess other things up and stress your kidneys, next time you have it tested make sure you are well hydrated beforehand and see what the result is then but for now I think you can relax Wink

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sun Jun 21, 2015 11:12 am

Thanks I do think I may be generally dehydrated I get very dry skin in general, my hands tend to get very bad and unless I put loads of cream on they get sore as do my feet, this is over last year.
I'm wondering if it's menopause.
I'm not over concerned about this being slightly over, I guess I'm just looking for answers as to why my eyes are constantly sore/inflamed more than anything else. With the endo and rheumy constantly passing the buck it doesn't help as ophthalmologist has said he can only treat symptoms and the underlying cause needs to be found.
Very frustrating.
A xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by NancyMi on Mon Jun 22, 2015 12:54 am

Hi Amanda, 
     I read your posts from the past month and am so sorry you are having to deal with this.  I can relate to a few of your symptoms like the sore eyes,  occasionally, and reddened eyes (don't know if you said that).
     I have thought about you and what you said in the past about the sensation of a stick or something in your eye.  I have had that too sometimes.  Like you, I have been tested for Lupus with the ANA test twice which has been negative and the c-reac protein which was low. 
     I just hate that you are going through this and that you don't feel well.

I am about 6 wks after the parathyroid surgery.  Now, I have to worry about trying to keep the calcium up.  It was actually under 9.0.   I have to be very careful about the type of calcium I use.  I need to make sure as much as possible that it is gluten free. 

I kept running to the bathroom before the surgery and thought for sure this would stop but it hasn't so maybe that was not coming from a parathyroid problem. 

Keeping you in my thoughts Amanda and hoping you get some answers. 

xxx,  Nancy

NancyMi

Posts : 169
Join date : 2014-04-05

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Mon Jun 22, 2015 10:18 am

Good to hear from you Nancy, not so good you have calcium problems, do the docs think it might settle down at some stage ?

The forum is very quiet these days which is a shame but we will plod on, do pop in when you can, good to catch up on news and progress Smile

Take care

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Mon Jun 22, 2015 11:58 am

Hi Nancy
Yes sore eyes are really distracting, I'm still hoping someone decides why it's persisting despite me being on low dose steroid drops. I'm not holding my breath !!!
I've had every inflammatory marker test done numerous times and they are always negative so I'm not sure if there is an autoimmune problem which could escape all this testing and not show up. I was hoping the consultants might be able to work this out !!!!!! Especially as it's not the only thing going wrong with me.

I'm sorry you are having problems with your calcium and hope that it starts to behave very soon.
 
Thank you for your kind thoughts sending you lots of love.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Little Audrey on Tue Jun 23, 2015 2:10 am

Well, it's nice to see Amanda and Nancy back too!    The gang is still around!!    I think we've all just been busy with appointments, research, and such.    That, and trying to get on with normal every day things just seems to take up all of my time.    I've missed being on here!

Amanda, I'm sorry you're still having trouble with your eyes.    I have trouble with very dry, burning eyes.   My ENT doctor thinks it's allergies.  I think it's something more.   I'm blaming it on the thyroid, since I'm still having trouble with some edema and itchy ear canals, which I keep hearing and reading are also hypothyroid symptoms.   I hope you get some relief soon!!

Nancy, I'm sorry to hear you're struggling with the low calcium.     I have never had that problem.   Actually, I wish mine was a bit lower.    It's not high, but I'd just feel better if it was a little lower.    I do hope you can get yours up a bit before much longer!

Nelly, you are absolutely right about drinking too much water.    My nephrologist recently told me to stop drinking so much water, because it was too hard on my kidneys.   I told him I had been drinking 8-10 eight ounce glasses of water a day plus 2 glasses of milk.    He told me I should continue drinking the milk, but cut back to no more than 6 glasses of water daily.   This isn't easy to get used to, but I'm trying.  I'm doing pretty well with it.

It is so nice to chat with you all again!!    I've really missed it!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sat Jul 11, 2015 9:34 am

Just a quick update. Had CT of abdomen letter from Gastro saying a query over thickening of small intestine so need barium follow through. I had that done yesterday, I asked what the radiographer thought and he said in his opinion nothing at all showing all looks good, phew !!!!
I've had bloods done and am seeing Endo on 16th I can't imagine that she will suddenly decide I have hypothyroid problems but I will keep you posted on that.

Hope you are all as well as possible and enjoying the sunshine.
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sat Jul 11, 2015 10:16 am

Lovely to hear from you, glad the tests have come back ok. I would push for a 3 month trial of Levo to see if that helps, good luck and keep us posted.

Sunshine good but windy here, just off on a flying visit to Devon to see eldest daughters new cottage, it's in the middle of nowhere across a field of cows so hope we can find it.

Love
Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Little Audrey on Sat Jul 11, 2015 2:10 pm

I too am glad the scan looked good, Amanda!   It's always nice to rule things out.  Although, when you're feeling like crap, sometimes it's nice when they find something, isn't it?   As long as it's something that can be fixed!!

It does sound like a thyroid problem to me too.   I hope you can get that all squared away soon.

As for enjoying the sunshine, it has been VERY rainy here!!!    For the past couple of months it seems to rain 6 or 7 days, and then we get 1 day of sunshine!     Today happens to be our sunny day.   Hadn't seen the sun in 8 days this time, I think.    This is the strangest, rainiest summer I've ever experienced here!     I've lived here my entire life, and I've never seen a summer like this!      It's gotten to where we all go outside in the rain to take care of our chores, because otherwise they will never get done!   The other day I was coming home from somewhere.    My neighbor was out getting her mail.   I hollered over to say hello.  She came over to my car and stood there talking for several minutes in the rain with no umbrella.   We sort of just ignore the rain now.    It is so pretty today, I have to get out there and enjoy it!   More rain on the way tomorrow!

Nelly, your daughters new place sounds wonderful!!    We used to have a field of cows behind our house.   I grew up 2 doors down from where I live now.   There was a farm behind these houses.    I used to LOVE hearing the cows mooing out in the fields during the summer.   The old farmer died, they sold his property, and some idiot thought it would be a great idea to build rows and rows of townhouses!!!   Crying or Very sad   Now that's what we have to look at!     I sure do miss those cows!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Mon Jul 13, 2015 7:23 am

Thanks Audrey hope the rain has stopped x
Nelly my last letter from Endo says all blood tests normal and if eye problems were related to thyroid, it would be due to antibodies affecting both thyroid and eyes and a trial of thyroxine would not affect eyes. She said she would not give thyroxine unless bloods indicate I have under active thyroid !
I've had loads of bloods done last week and am seeing her/someone !! on 16th so I guess it all depends on what bloods show.
Hope you had a great time in Devon your Daughters cottage sounds lovely.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Mon Jul 13, 2015 8:23 am

Yes she is right in that thyroxine won't help thyroid eye disease, other than steroids or in extreme cases surgery, there is no treatment for ted, it is active while the antibodies are high so has to run its course, usually it takes around 2 years to die down but will flare again.

Its very difficult when tests keep coming back borderline hypo, some doctors will treat but most stick to the guidelines and won't treat until tsh is over the top. A lot of people decide to self medicate and monitor themselves with private blood tests, not something I would be happy doing but if I was desperate then maybe.

The cottage is lovely and in a great position surrounded by farmland, literally sheep knocking on the back door ! her boyfriend works on the farm a few fields away so he can walk to work and she will be closer to the surgery and the livery yard where she keeps her horses, so slightly less miles for her to drive. Lots of tidying up to do in the barns which are full of past residents clutter and the paddocks are a wilderness but once cleared she will be moving her sheep in.
It takes us just over an hour to get there so near enough to zip down and help with the big tidy up and painting before they move in. Wish it was ours !

Keep us posted and good luck

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Mon Jul 13, 2015 9:31 am

The cottage sounds idyllic and good that you are near enough to help with all the messy stuff.
I did ask the eye consultant if he thought it was ted but he said he didn't but thought it could possibly, if thyroid was messing around be causing irritation and dryness.
I guess I'll see what happens on Thursday.
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Wed Jul 22, 2015 9:02 am

Hi All
Well I had my appointment with the lovely Endo and to cut a long story short she has told me she doesn't think any of my symptoms are thyroid related, she said all my bloods are normal (I didn't get a chance to know what they were as when I asked levels she specifically said NORMAL!!!) I have asked for copies of all blood test results she said they would be sent to me. I do know my vit d is 66 so it's not down to that. She said oh and it's definitely not due to FHH. When I asked her if she had any suggestions what they were due to she said no.
She has now signed me off for 1 year.
I do think the vit d increase has helped a bit, I don't feel quite so much muscle pain or stiffness but I'm still left with extreme tiredness, very dry skin, pain in feet and lower legs, achey hands which tingle, back ache, very painful edges of heels, sore eyes, cold hands and a battle not to put weight on which at the minute I'm winning but I'm eating a lot less than normal and I've always had a very healthy diet and never over eaten.
I've now been thoroughly checked for inflammatory bowel disease. Double endoscopy, CT and barium follow through !!!!! and according to the last radiographer all looks fine so I don't think it's related to that.
I see Gastro early Aug and then Rheumy but as nothing has ever shown on inflammatory markers in blood tests I'm not sure how this is going to pan out.
Feeling rather confused and fed up that there doesn't seem to be an answer. I will post thyroid blood results when I get them. 
Nelly & Edwin how are you hope things have settled down a bit.
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Wed Jul 22, 2015 10:40 am

Hi Amanda

Not sure what I can say to help, you have classic hypo symptoms but your blood results are taking time to show it. Your vitd is still low end of the sufficient level so if you can get it higher it might improve things.
Do post your results when you get them, be interested to see if there is any change from last lot. 

We are ticking along thanks,  Edwin has the second op on his arm this Friday, as long as it doesn't knock him back again it may be possible to put dialysis on the back burner for a while as his kidney function is slightly better, will have to wait and see what happens. I'm having blood test on Monday so can't wait to see where calcium and PTH are, also thyroid as I suspect that might still be squify Rolling Eyes 
Keep us posted and good luck with your next appts.
Take care 

Nelly
avatar
Hadleigh

Posts : 799
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Wed Jul 22, 2015 12:20 pm

Thanks Nelly
I'll post them as soon as I have them. Endo seemed delighted with my vit d results and said they were excellent !!! Just shows how skewed her judgment is. I've been having a few dizzy spells over the last few days not sure what that is all about. Oh forgot I did get told lates calcium level which was 2.57 their range is up to 2.55 so that's not too bad.
Give Edwin my best wishes for Friday I hope it all goes well x
Hope your blood tests come back showing things are settling down.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Sponsored content


Sponsored content


Back to top Go down

Page 4 of 11 Previous  1, 2, 3, 4, 5 ... 9, 10, 11  Next

View previous topic View next topic Back to top


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