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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 Hadleigh on Wed Oct 21, 2015 9:27 am

Another endotwat, some pretty idiotic remarks he came out with, deserves a bunch of fives !

What about the nice endo FP recommends, can't remember his name, would it be worth writing to him for an opinion ? was it Tigerlily who saw him ?

Nelly
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Re: Long time away

Post by Tigerlily on Wed Oct 21, 2015 10:17 am

I didn't see him, Nelly, but I remember he was recommended by FP to someone on the forum.

James Ahlquist - works out of Southend on NHS (a bit of sea air is always welcome!) and London, too, privately.

FP said he was experienced in calcium imbalance (should include FHH) and his profile says as much + thyroid issues, I think.

Might be worth a try, Amanda. He's the guy I would go to in your shoes.

Love from Tigerlily xxxx

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Re: Long time away

Post by Amanda Lynne on Wed Oct 21, 2015 10:47 am

Hi Nelly & Tigerlily
What I don't want to do is end up sitting in a consultants office with them making me feel like I'm a total waste of space and then paying them for the pleasure. Also knowing how my GP feels getting a 3rd Endos letter hinting that I'm a paranoid hypercondriac will just about scupper any chance of me ever being taken seriously. 
I have emailed eye dr to let him know how it went and I'll make an appointment to see him as he said what ever happened he would still try to help me.
Amanda xxxx
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Re: Long time away

Post by Hadleigh on Wed Oct 21, 2015 11:47 am

Amanda I am not recommending any products or self medicating but if you look on Amazon there are thyroid supplements which I know people on TUK forum swear by, have spent a bit of time researching and actually I'm almost tempted to try one myself.

If you are interested I can pm you (simply because I don't want to put it on the forum !) the 2 which appear to be the favourites.

Totally understand if you going down that route is not for you.

Nelly
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Re: Long time away

Post by Amanda Lynne on Wed Oct 21, 2015 4:58 pm

Hi Nelly
Please PM me thanks xxx
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Re: Long time away

Post by Tigerlily on Wed Oct 21, 2015 5:43 pm

Nelly - could you also PM me with these? I'm still trying to get Armour prescribed but needless to say am having no success. It would be very useful to know what the TUK people recommend.

Many thanks!

Tigerlily xxxx

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Re: Long time away

Post by Admin on Wed Oct 21, 2015 6:01 pm

I realise that it will not help you feel better, but this is worth a read ....

http://drmalcolmkendrick.org/2015/05/01/treating-thyroid-patients-like-children/

Edwin
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Re: Long time away

Post by Hadleigh on Wed Oct 21, 2015 7:29 pm

Amanda and Tigerlily I have sent you both a pm, let me know if you don't receive it.

Nelly
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Re: Long time away

Post by Tigerlily on Wed Oct 21, 2015 8:50 pm

Received, Nelly - and many thanks for the info - have sent you a PM back.

Love Tigerlily xxxx

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Re: Long time away

Post by Amanda Lynne on Wed Oct 21, 2015 10:11 pm

Thanks Nelly I've got it and PM'd back xxx
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Re: Long time away

Post by Amanda Lynne on Thu Oct 22, 2015 8:21 am

When I was given the Chronic Fatigue Syndrome booklet by the lovely Endo although he had decided he didn't want to see me again, he asked me to read it and return it to him (don't even get a free leaflet !!!!!) with notes on if and how I think this relates to my "condition". 
Now I would like to return his leaflet (as he obviously is running short of funds !) any (sensible X) suggestions of what I could include so that I don't shoot myself in the foot (so that's what is causing them to hurt X)
I would like to point out that his dismissal of a hospital lab blood test results as not being reliable (just because they were the most indicative of thyroid problems) was concerning. Obviously I have to be careful what I say.
I also want to mention not thinking amytriptaline was appropriate. Weirdly despite feeling totally p****d off I slept from 10pm -6am only waking once but I'm in agony, feet are killing me and hands and shoulders very painful.
Thanks for any input.
Love Amanda xxxx
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Re: Long time away

Post by Tigerlily on Thu Oct 22, 2015 11:36 am

http://www.mayoclinic.org/diseases-conditions/hypothyroidism/expert-answers/hypothyroidism/faq-20057789

Amanda - I've just googled "foot, hand and shoulder pain in hypothyroidism". This and a lot of other stuff comes up, so it looks as though they are symptoms.

Make sure you keep a copy of the booklet for posterity! And as evidence of what this endo was thinking when you finally get to someone who knows what's going on for you.

Yes, the Amyltriptilene does give you a good night's sleep. As I said earlier, I take one once in a while if I think I'm not going to sleep and Sainsbury's herbal sleep tablets are not going to do it for me.

Back soon if I have more suggestions - Love Tigerlily xxxx

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Re: Long time away

Post by Tigerlily on Thu Oct 22, 2015 11:50 am

http://www.spirehealthcare.com/wellesley/our-facilities-treatments-and-consultants/our-consultants/dr-j-a-ahlquis

(There is a T on the end of his surname.)

Here is a link to the guy FP recommended - you can see from his profile that he is very thyroid and endocrinology oriented. No, he is not paying me to advertise him!! It's just that he seems well qualified in the areas you need.

In your position, I would put the other endo well behind you and get to see this guy. We shouldn't have to pay for the privilege, but hey that's often the system if you need to see someone pronto.

You've kissed a few frogs, Amanda (so have I!) - so sorry to hear you are in such pain.

Also have a look at the website "Stop the thyroid madness" for useful information (there is a book and a follow-up book of the same name - post-free from thebookdepository.co.uk).

Love and Hugs from Tigerlily xxxx

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Re: Long time away

Post by Admin on Thu Oct 22, 2015 11:56 am

I would be inclined to write back to the endo and say thay, having read the booklet, you are now even more convinced that you have hypothyroidism, especially after discussion with other people who have Hypothyroidism who all say that they felt much better when their TSH was 1 or lower.

Edwin
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Re: Long time away

Post by Amanda Lynne on Thu Oct 22, 2015 12:13 pm

Hi Tigerlily
I haven't taken any amytriptaline but thanks for all your suggestions. I think at the moment I'm too stressed from the last Endo appt to make anymore. I don't think I could take another put down like that. I've emailed eye dr and his reply was to say sorry it didn't go well, he is a respected senior physician !!! 
He said the problem was nothing is showing up on tests (maybe if they accepted borderline thyroid tests it would be obvious) so diagnosis is difficult ! Even for him and he can see symptoms.
He did say it might be worth a try of amytriptaline as a pain releaver not antidepressant even if it's to prove that it doesn't work. Then to make appt 2 wks time.
So I guess I will try it, it goes against all my principles on this. Is it really going to stop my breaking hair, awful dry skin, sore eyes, feet swelling and being agony, hands back neck hip pain etc etc.......I will keep an open mind about it.
However if it renders me a zombie unable to work or makes me feel worse I will stop it immediately. I can't just stop managing my business for an experiment.
I'll have a good look at everything you've posted.
Thanks Tigerlily xxxxx

Hi Edwin
Yes I was thinking how to go about that. I know whatever I say he's already decided what type of patient I am 
Xxxx
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Re: Long time away

Post by Admin on Thu Oct 22, 2015 5:46 pm

The sad thing about the Thyroid fiasco is that there are several medical papers written by neuro, cardiac and other specilists on the importance of sufficient T3 to ensure normal function of the brain, heart and other organs, and then we have Endo twits dismissing T3 as unimportant.

Makes be very angry when I think about it, which I do too often.

Edwin
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Re: Long time away

Post by Amanda Lynne on Thu Oct 22, 2015 6:09 pm

Yes Edwin, I don't propose to know too much about it all despite trying to read up but wouldn't it just make sense to save NHS time and money to actually treat people with hypo/hyper symptoms who have iffy blood results even if they are within range xxx
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Re: Long time away

Post by Amanda Lynne on Thu Oct 22, 2015 8:48 pm

I posted on thyroid uk and this was the reply from admin there, I'm Mandy on it.


Mandy, thyroid peroxidase antibodies <33 means you are negative for autoimmune thyroid disease (Hashimoto's).

FT4 has been at the bottom and below range and 8.6 is low in range. FT3 is also low in range. NHS won't diagnose hypothyroidism until your TSH is >5.6 or FT4 is <7.5. I'm surprised the private doctor you saw wasn't concerned about low FT4.

I'd say you are borderline sub clinically hypothyroid and recommend you ask your GP to retest in 6 months. Arrange the blood draw early in the morning when TSH is highest, and make it a fasting test (water only) as TSH drops post-prandially.

Email louise.warvill@thyroiduk.org.uk for a list of member recommended endos and private GPs.
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Re: Long time away

Post by Hadleigh on Thu Oct 22, 2015 9:11 pm

Yes we did spy you had posted on TUK Very Happy

I wouldn't wait another 6 months for a retest, and it is possible to be diagnosed before TSH hits 5.6, just depends on the doc. Clutter can be good but gets a bit above herself sometimes, she isn't actually Admin, just a member that has been given a job as moderator, although none of the modertors ever act on anything ! no idea why they call them Admins Rolling Eyes

You could email Louise for docs names but no guarantee any of them will play ball, possibly JA would be a wiser move.

Nelly
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Re: Long time away

Post by Amanda Lynne on Thu Oct 22, 2015 10:31 pm

Hi Nelly
I know it's just another opinion but I've been so wobbly since the Endo appointment, I've doubted myself, he's made me think that maybe I am paranoid and making myself ill, I've felt like just giving up the fight.
I know you have all been so brilliant and never doubted me because you have seen all my blood tests and I've told you everything that's gone on but feeling like there is no light at the end of the hypothyroid tunnel after seeing him has been rough. I just need to find a way to get my health back and not get worse.
I guess these things are sent to try us as you guys well know and have more than enough going on.
Love A xxxx
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Re: Long time away

Post by Hadleigh on Thu Oct 22, 2015 11:04 pm

Its good your replies on TUK confirmed what we all suspected, the more info you get the better to help you keep fighting.

I know how weary all this makes you, I am the same with my dodgy liver results, 6 years down the line and still I have no idea why and Gastro have lost interest, I have given up Neutral but I'm not having symptoms so easier for me to do.

You have so many classical symptoms and as Clutter confirmed, you are boderline hypo, some people don't get symptoms until levels are way off the scale but many many people like you will be suffering badly even though results don't show much, the forum is chocker block with people going through the same fiasco of trying to get someone to give them a chance to feel better.

You aren't paranoid, you just need a doc who can think outside the blasted guidelines.

Maybe take a break, gather some strength and perhaps email Dr Ahlquist for his thoughts.

Don't give up Amanda, you deserve to be well and we are all here to help if we can, shoulder or punch bag, we can do both Wink

Love
Nelly xx
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Re: Long time away

Post by Amanda Lynne on Fri Oct 23, 2015 9:12 am

Thank you Nelly
I do appreciate your support and I'm sorry you are experiencing your own battle with uninterested medics. Also Edwin has been brilliant and he's got loads going on as well.
I think I will go away and lick my wounds and I'll come back on after I've seen eye Dr.
Thank you again, it means a lot to me.
Love Amanda xxxx
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Re: Long time away

Post by Tigerlily on Fri Oct 23, 2015 9:21 am

Hang on in there, Amanda. Have a rest from it all, as Nelly says. It all seems to hinge on finding someone who can read the blood test results aright. But someone always pops up in the end. I had the same trouble with the PTH biochemistry - and as soon as there is one letter on your file saying you don't have something, then everyone else you consult lines up behind that first opinion. They did it with me with Mac da K. They were even using the same phrases as he had written in his letter!!

Rest up - then maybe ring JA's sec to see if you can email him your results/symptoms to ponder before making an appointment to see him?

Love and Hugs from Tigerlily xxxx

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Re: Long time away

Post by Hadleigh on Fri Oct 23, 2015 9:47 am

Amanda if you are not comfortable with the idea of taking thyroid supps and I totally understand that, I am the same, do some reading up on Selenium, many people take it for thyroid support. Apart from supplements a good source is brazil nuts amongst other things, have a google, it may just make a difference.
Love
Nelly x

Just had a quick scan through this info, seems to make sense, might try some myself

http://www.stopthethyroidmadness.com/selenium/
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Re: Long time away

Post by Amanda Lynne on Fri Oct 23, 2015 10:51 am

Thank you both, I'll have a read up and try some selenium xxxxx
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Re: Long time away

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