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Long time away

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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)

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Re: Long time away

Post by Admin on Thu Oct 15, 2015 6:32 pm

@Amanda Lynne wrote:How is everyone doing ? X

Getting closer to dialysis, unfortunately :-(

My PTH is now over 80 and my renal consultant does not want to do surgery to get the PTH down at the moment, as my Urea level is high, which is why I have done a lot of bleeding following all three operations this year.
She wants me to start dialysis to get the Urea down, then PTH surgery.

Ho-hum

Edwin

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Re: Long time away

Post by Amanda Lynne on Fri Oct 16, 2015 11:45 pm

Thanks Tigerlily I've emailed my eye Dr about iron overload causing eye problems, he has replied saying he has not heard of it but has asked his labs at spire Harpenden to investigate and will get back to me. I also have my Appt with Endo Colin Johnston there on Tuesday.
Sorry to hear that Edwin will that mean permanent dialysis or is it just to get the urea down before surgery ?
Amanda xxxx

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Re: Long time away

Post by Admin on Sat Oct 17, 2015 1:55 am

@Amanda Lynne wrote:Sorry to hear that Edwin will that mean permanent dialysis or is it just to get the urea down before surgery ?
Amanda xxxx

Not sure at the mo, but I suspect that my consultant will want it to be permanent, as she has been dropping very large hints for the last few months.

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Re: Long time away

Post by Amanda Lynne on Sat Oct 17, 2015 8:25 am

Hi Edwin
That's rough for you Edwin will you have to travel far for that and will it be daily dialysis.
Will it improve how you feel. Sorry you are going through so much, makes my problems seem minor compared to what you are going through.
Sending love to you and Nelly xxx

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Re: Long time away

Post by Amanda Lynne on Sun Oct 18, 2015 9:36 am

Any advice for my appointment on Tues with Endo.
Should I take all my previous blood tests etc or should I take some and let him check me without too much previous influence.
I don't want him to be influenced by previous Endos dismissive approach after diagnosis of FHH so I'm don't think any comments from her will be helpful.
I was thinking of taking all blood tests results including syncanthen test results also Rheumy comments saying autoimmune tests all clear. I also have hormone test results for menopause saying nothing obvious on that. 
What do you think will be helpful ?
Thanks for any help.
Amanda xxxx

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Re: Long time away

Post by Amanda Lynne on Sun Oct 18, 2015 11:33 am

Feeling very dispondant now just googled him and it looks like he's one of the TSH doesn't lie brigade. I maybe wasting my money.
A

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Re: Long time away

Post by Hadleigh on Sun Oct 18, 2015 8:51 pm

Hi Amanda

It would be an idea to have it all handy but I would wait and see how things go before showing him past history, maybe pick and choose which bits of info to tell him. They do tend to like having there own sets of results so you may be in for a redo of everything.
Hopefully he is a symptoms rather than numbers man !
Good luck

Nelly

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Re: Long time away

Post by Amanda Lynne on Sun Oct 18, 2015 10:39 pm

Thanks Nelly, there may be a glimmer of hope just watched utube and there's 3 clips of him doing seminar on thyroid. All very the figures don't lie but when he gets to hypo he did say that sometimes with people with borderline results a trial of thyroxine is occasionally worth doing and this was in his NHS mode.
A xxxx

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Re: Long time away

Post by Admin on Sun Oct 18, 2015 11:16 pm

@Amanda Lynne wrote:Hi Edwin
That's rough for you Edwin will you have to travel far for that and will it be daily dialysis.
Will it improve how you feel. Sorry you are going through so much, makes my problems seem minor compared to what you are going through.
Sending love to you and Nelly xxx

It will be 3 days per-week, 4-hours per-day at Exeter Hospital, initially.
That's around 1 hour 15 mins when there's not much traffic.

Once I start, I can get on the waiting list for one of the nearer satellite dialysis centres.

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Re: Long time away

Post by Amanda Lynne on Mon Oct 19, 2015 2:12 pm

Gosh Edwin that's a lot of hours on dialysis and an awful lot of travelling. I do hope if you have to go on it you get to go to the nearer satellite centres quickly.
Amanda xxxx

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Re: Long time away

Post by Admin on Mon Oct 19, 2015 6:34 pm

@Amanda Lynne wrote:Gosh Edwin that's a lot of hours on dialysis and an awful lot of travelling. I do hope if you have to go on it you get to go to the nearer satellite centres quickly.
Amanda xxxx

We are also considering home dialysis, which is better for me and significantly less travelling and time for Nelly, but it means creating a new room so that there is space for a bed, the dialysis machine (about the size of a large printer) and the supplies (lots of space needed, apparently).

Been considering a garden room (not my favouirite) or an extension with re-shuffle of the kitchen and dining room (very expensive).  No decision yet.

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Re: Long time away

Post by Tigerlily on Mon Oct 19, 2015 8:42 pm

Hi Edwin and Nelly - I do hope you'll be able to arrange for treatment at home somehow. It would be much less stressful for you both than having to do so much travelling.

Love from Tigerlily xx

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Re: Long time away

Post by Hadleigh on Mon Oct 19, 2015 11:01 pm

Hmm not sure, problem with doing it at home is we have to go it alone, no medical backup at all other than a phone call to Exeter during working hours for emergency advice and if the machine goes wrong it will be a call to USA for tech advice. Out of hours we will be stuffed Neutral
Ho hum, never easy.

Nelly xx

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Re: Long time away

Post by Admin on Mon Oct 19, 2015 11:26 pm

@Amanda Lynne wrote:Feeling very dispondant now just googled him and it looks like he's one of the TSH doesn't lie brigade. I maybe wasting my money.
A

It may be worth you having a read of this and take a copy in case he shows signs of open-mindedness?
https://www.nahypothyroidism.org/deiodinases/

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Re: Long time away

Post by Amanda Lynne on Tue Oct 20, 2015 7:09 am

Thanks Edwin
I'm not sure I understand all of it but I will take it with me. Thank you.
Amanda xxxx
Just so I don't lay myself open for a diagnosis of fibromyalgia what is the difference in symptoms.
Xxx

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Re: Long time away

Post by Hadleigh on Tue Oct 20, 2015 8:39 am

The symptoms of fibro can be very similar to those of under active thyroid, this is why so many people are misdiagnosed. A lot of people are told they have both but in reality it is more than likely they simple have undertreated hypot, so with proper treatment the fibro/thyroid symptoms will improve.
Have a google of both sets of symptoms then hopefully you can avoid falling into the fibro trap.
Nelly

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Re: Long time away

Post by Admin on Tue Oct 20, 2015 9:25 am

An interesting point about Fibromyalgia is that this "disease" did not exist until doctors stopped diagnosing Hypothyroidism by symptoms and started diagnosing by TSH level in the 1970s.

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Re: Long time away

Post by Amanda Lynne on Tue Oct 20, 2015 9:35 am

Thanks Nelly, yes they bandied fibro about a lot before I was diagnosed with pth, I have
discussed it with rheumy and I think he did a test where he lightly touched certain points in neck etc and I don't think he was convinced it was that, although he did say if nothing else is proven then the diagnosis is usually fibro !!!!
I don't think the dry hair and thinning hair is fibro or the disappearing eyebrows and weight gain.
I will check it out.
Yes Edwin it does seem too much of a coincidence and the easy way out. Surely it would be better to give people a trial of thyroxin to see if any improvements happen than to waste years of NHS money with people back and forth to hospital with something that they say can't be treated. I have read that some people diagnosed with fibro have been given thyroid replacement and have improved, surely that's not just a coincidence.
Amanda xxxx

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Re: Long time away

Post by Tigerlily on Tue Oct 20, 2015 11:02 am

It's those disappearing eyebrows that are the clincher for me, Amanda. Loss of outer third of the eyebrows is frequently quoted as a marker for hypothyroid - and you'd be amazed how often you see this in pictures of people on TV, in the papers etc.

Sorry to hear home dialysis is so fraught, Nelly. I expect you will have to make the journey for a while to get used to all the technics. Good that you both have such fine brains to be able to take all this on board!!

Love from Tigerlily xxxx

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Re: Long time away

Post by Hadleigh on Tue Oct 20, 2015 1:00 pm

Hahaha yesterday when I couldn't do a Pilates move my instructor said my brain had turned to custard, not wrong there Rolling Eyes

Yep eyebrows are a classic, mine disappeared yonks ago, I get whats left tinted sometimes but always worried it will go wrong and it will look like 2 slugs are walking across my face Shocked  Laughing

Nelly

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Re: Long time away

Post by Admin on Tue Oct 20, 2015 1:52 pm

@Amanda Lynne wrote:Yes Edwin it does seem too much of a coincidence and the easy way out. Surely it would be better to give people a trial of thyroxin to see if any improvements happen than to waste years of NHS money with people back and forth to hospital with something that they say can't be treated. I have read that some people diagnosed with fibro have been given thyroid replacement and have improved, surely that's not just a coincidence.
Amanda xxxx

Agreed, but there is still the issue of TSH being used as the reference for determining the level of Thyroid hormone replacement, which commonly results in under-medication and a continuation of symptoms.  Also, Levothyroxine does not suit everyone, especially if there is inadequate conversion to T3, in which case the Levo may need to be supplemented with some T3 (extracting blood from a stone comes to mind on this second point).

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Re: Long time away

Post by Tigerlily on Tue Oct 20, 2015 2:46 pm

I get loads of corkscrew ones in what's left!

Pats to Hadliegh - Love from Tigerlily xx

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Re: Long time away

Post by Amanda Lynne on Tue Oct 20, 2015 11:02 pm

Complete waste of time and money, I'll keep it short. Wanted to see previous blood tests, realised it was going wrong when he referred to previous Endo by her first name. Said all results fine, I questioned the one out of range Ft4 and the other ones that are borderline. He said he didn't trust them as they had been done by a lab he didn't know !!!! Said he didn't know why I was ill, I need more sleep !!!! Wrote prescription for amytriptaline and said I don't think you need to come back. Try these.
A x

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Re: Long time away

Post by Hadleigh on Tue Oct 20, 2015 11:23 pm

Oh Amanda I'm so sorry it didn't go well, so disappointing.

I guess all you can do is keep having thyroid tests and hope that TSH will go out of range before to long.

One glimmer of hope is that info about the TSH test being useless is begining to filter through to GP's, they just need to take note and change their ways.

Take care and keep soldiering on I love you

Nelly x

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Re: Long time away

Post by Amanda Lynne on Wed Oct 21, 2015 5:56 am

Thanks Nelly
Been up most of the night totally stressed out. I'm concerned that he will completely scupper any chance of anyone else even thinking about giving me a trial. Some of his comments were, there's no evidence of anything physically wrong I took copy of Rheumy letter saying I have plantar fasciitis and also us report saying bursa in foot. He checked my feet and painful tendons which I jumped every time he touched a tender spot. He said he didn't think I should have steroid injection which I agree with but throughout the whole time he really didn't seem interested. He said I'd had everything checked and in his words"nothing serious has shown up" so "you won't die just yet". He also said I shouldn't have had adenoma removed because of FHH. He said the reason I have osteopenia is that I've been reasonably slim all of my life !!!! His solution was to have put on weight.!,,,,
What I fail to understand is the symptoms I have are classic hypothyroid and as the eye dr said if you are showing symptoms why not trial thyroxine to see if it makes a difference. I did say same to Endo but he said NO it's definitely not thyroid related but he couldn't say why I was unwell. He really thought it was all brought on by lack of sleep and worrying about being ill. Kept saying are you depressed do you have feelings of self harm.
No I'm not and I could have done him some harm and I'm paying for the pleasure. I will email my eye dr today and let him know how it went and book another appt with him to see if he can at least help with my eyes.
A x

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