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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 Amanda Lynne on Fri Nov 27, 2015 4:36 pm

Thanks Edwin that's a massive help. Amazing you can give me this info yet the GP just wrote the prescription and didn't offer any advice. He said nothing about blood tests or coming back to see him either. 
Still at least I got it and I know I can ask here for advice.
How are you doing Edwin ? 
Thanks again, Amanda xxxx
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Re: Long time away

Post by Hadleigh on Fri Nov 27, 2015 5:19 pm

Amazing result Amanda,

I take mine first thing in the morning then try to wait an hour before breakfast, doesn't always work out ! main thing is to take it at the same (roughly) time every day then your bod will adjust and get used to it, may take a while and don't be surprised if you feel a tad worse to start with.

Even if you haven't felt any great improvement after the 6 weeks I would tell a porky and say you have because you really need longer than 6 weeks and more than 50mcg to give it a fair go, 12 weeks at least.

We are here to help if you have any questions, I so hope this is the start of you feeling better, lots of luck  bounce 

Love
Nelly
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Re: Long time away

Post by Amanda Lynne on Fri Nov 27, 2015 7:40 pm

Thank you Nelly you are so kind I really appreciate yours and Edwin's support and everyone else's on this site.
I'll take them when I wake up before I get up.
Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Sun Nov 29, 2015 2:15 pm

I'm getting really bad reflux, not sure if it's anything to do with the thyroxine, any advice ?
Thanks Amanda xxxx
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Re: Long time away

Post by Hadleigh on Sun Nov 29, 2015 3:21 pm

If it has happened since starting the Levo then it is possible. Reflux is a symptom of hypothyroidism and some symptoms can get a bit worse when you first start Levo.

Which brand of Levo were you given ? I'm guessing it was Mercury Pharma as they are the only 25mcgs available. Some people are sensitive to the fillers in Levo (quite common with MP brand ) so have to find a brand that agrees with them. It may be that you just need a bit of time to adjust to the thyroxine. If you are really struggling you could ask your GP to change the brand to Actavis 50mcg (usually less problems with Actavis) and cut them in half to give you the 25mcg. Also make sure you take the Levo with lots of water so it doesn't dissolve in your throat and cause a problem.

Taking a ppi can be a bit of a minefield when hypo and on Levo so you may need to look into that side of things at some stage.

Don't despair, early days.

Love
Nelly xx
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Re: Long time away

Post by Amanda Lynne on Sun Nov 29, 2015 3:31 pm

Hi Nelly
Yes they are, the 50mcg are Actavis so I'm hoping they maybe better, reflux had been a bit iffy before I took them, it's always up and down (pardon the pun). It's pretty bad today so I'm going to try to eat very carefully and see if that helps. I tried gaviscon but that seemed to make it worse. I'm hanging on in there x
Amanda xxxx
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Re: Long time away

Post by Hadleigh on Sun Nov 29, 2015 3:48 pm

Have you got Gaviscon Advance, I find it better than the plain bog standard variety. I also find that sipping water throughout the day helps and steering well clear of tea, chocolate and polo mints, not easy  Rolling Eyes

You could try taking the Levo every other day for a week then go back to daily, sometimes slowly slowly works best.

Nelly xx
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Re: Long time away

Post by Amanda Lynne on Sun Nov 29, 2015 4:10 pm

Thanks Nelly I'm going to stick it out a bit longer to see if it's that and maybe try breaking the 50mcg ones in half if it doesn't get better, then I can ask GP for more of those. I'll get some gaviscon advance and try it as well. 
Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Thu Dec 10, 2015 7:16 am

I'm pleased to say taking the Levo has got easier, it's not perfect but I can manage without having to take any extra ppi or gaviscon, the worst time is when I wake up but taking the tablet then doesn't seem to cause agony any more.
I increase the tablets to 50mcg on the 19th !!!
Hope you are as well as can be expected.
Love Amanda xxxx
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Re: Long time away

Post by Hadleigh on Thu Dec 10, 2015 12:26 pm

Are you feeling any benefits yet ? 50mcg should have a bit more effect, lets hope so anyway.

Plodding on here, just got back from Exeter where I saw a new Urology Consultant, really nice lady, she wanted to check my calcium as she is pretty sure that is what caused the stones, not sure if they will do pth as well, so had bloods done and now have to wait for a CT scan then a plan of action. Edwin is having his isotope scan on Monday, lord only knows what that will reveal Rolling Eyes

Good luck with the Levo increase.

Nelly
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Re: Long time away

Post by Amanda Lynne on Thu Dec 10, 2015 2:45 pm

Thanks Nelly I think I feel slightly better in general, nothing specific but I don't feel like death warmed up quite so much and feeling a bit brighter in myself but I guess it's not even 2 weeks and I'm on very low dose.
I'm glad you have found a new urologist who looks like they may be of help, good luck with the results. Send my best wishes to Edwin I hope all goes well on Monday and it doesn't show up anything you don't already know about.
Love Amanda xxxx
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Re: Long time away

Post by Hadleigh on Thu Dec 10, 2015 3:11 pm

I would say if you are feeling something that is very positive, if you didn't need the thyroxine you would be feeling worse, so its looking good.

If you start the 50mcg and feel a bit buzzy you can always drop back down to 25 for another week or so then try 50 again. In the past we only increased after 6 - 8 weeks but these days some docs say 2 weeks which is sometimes a tad too fast for some people, slowly slowly is usually best with thyroid stuff, just see how you go Wink

I will pass on your good wishes, thank you I love you

Love
Nelly xx
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Re: Long time away

Post by Tigerlily on Thu Dec 10, 2015 4:03 pm

Glad to hear you are seeing some improvement, Amanda - really good news!

Love to you and Nelly and Edwin - take care of yourselves, y'All.

Tigerlily xxxx

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Re: Long time away

Post by Little Audrey on Fri Dec 11, 2015 5:32 pm

I haven't been here for quite while, and I am not trying to get caught up with ll of our stories.

Amanda, I am absolutely thrilled that you are finally getting some help for your symptoms!!     The symptoms did all sound like thyroid symptoms to me.    I have many of them myself, and I'm hoping to get my levels optimal eventually.    It is awful to be so sick and feel so awful and not have a doctor who is interested in helping.  It sounds like you have finally found one!     Let's hope your doctors can now get this all straightened out for you!    You're on the way now!

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Re: Long time away

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