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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 Sun Oct 25, 2015 10:08 am

Amanda you may already have seen this from NICE, useful info to show your GP

http://cks.nice.org.uk/hypothyroidism#!scenario:1

Nelly
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Re: Long time away

Post by Amanda Lynne on Sun Oct 25, 2015 1:41 pm

Nelly that is so interesting. It says the magic number of TSH over 4.5 which I don't have but it is a very very interesting article and when I've plucked up the courage to go back to see DR's I think I will take this with me. My TSH IS rising. 
Thank you xxxxx
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Re: Long time away

Post by Hadleigh on Sun Oct 25, 2015 1:55 pm

Coming from Nice he can't really dismiss it, hope he sees sense.

Love
Nelly xx
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Re: Long time away

Post by Amanda Lynne on Sun Oct 25, 2015 2:33 pm

It mentions a Mark Vanderpump Endocrinologist. I've looked him up and there are a few articles on him saying that symptoms are as important as blood results. He runs surgery in London. I've found an email address and just sent quick note asking if possible hypo with my blood results. I've mentioned GP said no but I've not said about Endos. He may not reply without appt but I've said I'd be prepared to see him if he thought I may have it.
Long shot but who knows and I don't want to shell out another £200 + if he's going to say the same.
Amanda xxxx
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Re: Long time away

Post by Hadleigh on Sun Oct 25, 2015 2:51 pm

I know the name but not much about him so must have a google, definately worth a shot.

Hope you he replies with some helpful info, will keep everything x

Nellyxx
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Re: Long time away

Post by Amanda Lynne on Sun Oct 25, 2015 3:51 pm

Thanks Nelly you are such a massive help, it's really appreciated.
Xxxx
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Re: Long time away

Post by Amanda Lynne on Mon Nov 09, 2015 6:21 pm

It's me again xxxx
I'm having a horrible feeling of something stuck in my lower throat/feels like someone is pressing on it.
I've had a cold and thought it was due to that but it's not like a sore throat and the cold has gone now.
Amanda xxxx
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Re: Long time away

Post by Tigerlily on Mon Nov 09, 2015 6:34 pm

Hi Amanda - sorry to hear this. I get it sometimes too, as if you have an inside out sore throat? And the soreness is inside your neck but on the outside of your actual throat tube???

As I have Hashi's, I'm never surprised at the throat feelings I get. I get episodes of this as then it dies down a bit. Hopefully it will pass with you as your cold fades.

Have you had a reply from Mark Vanderpump yet? I really hope he responds soon for you.

Love and Hugs meantime from Tigerlily xxxx

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Re: Long time away

Post by Amanda Lynne on Mon Nov 09, 2015 7:26 pm

Hi Tigerlily 
The cold has completely gone now and it feels like my throat is a bit constricted very strange. I will see how it goes if it's not gone in a week I'll try and get DR's appt.
The only contact I've had from Mark Vanderpump is an email from his secretary saying if I want an appointment to contact them. As his appointments cost upwards of £250 I don't want to go and be mad to feel like I did at the last one so I'm putting it off at present. I hope you are doing ok.
Love Amanda xxxx
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Re: Long time away

Post by Tigerlily on Mon Nov 09, 2015 8:12 pm

Thanks, Amanda. Doing OK but with plenty of bone lumps and bumps giving me gip, to use an old-fashioned phrase! I had to give in an accept Gabapentin from a new GP who offered it - it's a nerve block which is supposed to give my pain receptors a bit of a rest for while, and then I can discontinue it hopefully. It seems to do the job, so I'll see what happens.

Still dreamin' of The Ritz - perhaps we should go anyway to cheer ourselves up - the road to wellness seems a little over-long sometimes!

Love from Tigerlily xxx

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Re: Long time away

Post by Hadleigh on Mon Nov 09, 2015 8:24 pm

Amanda, I'm only guessing here but it's possibly a touch of thyroiditis caused by your cold, if your thyroid is struggling then it may be the virus was enough to irritate things slightly. As Tigerlily said, with Hashi's, throat symptoms come alongside a flare up but I think Hashi was ruled out for you wasn't it ? as your antibodies are not raised.

A goitre is another reason for throat symptoms but it should have shown on previous scans if there is one unless of course it's new.

Hopefully it is just the remains of the cold and not something new for you to deal with.

Shame Dr MV didn't reply, maybe keep him on the back burner until you feel sure about seeing him.

Hope you get over the throat probs soon,
Love
Nelly xx
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Re: Long time away

Post by Amanda Lynne on Mon Nov 09, 2015 8:58 pm

Thanks Nelly
My throat does look a bit swollen  but I'm not going to jump into anything just yet, I'll see how it goes.
A xxxx
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Re: Long time away

Post by Tigerlily on Tue Nov 10, 2015 8:59 am

Good thinking, Amanda. 

Sorry to keep on about that James Ahlquist, but he was recommended by FP and does have a specific interest in calcium metabolism, which should include managing FHH, as well as thyroid.

I'll be seeing him myself if things don'rt settle down on the bone front very soon!

Love from Tigerlily xxxx

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Re: Long time away

Post by Amanda Lynne on Tue Nov 10, 2015 3:06 pm

Hi Tigerlily
Sorry to hear you are suffering, hope the Gabapentin does some good. I have thought about JA but I'm so scared of going and being made to feel like last time, it's really made me feel very very down so I'm not sure about seeing anyone who may be singing from the same hymn sheet blood test wise.
Thanks for your advice, always greatly received xxx
Love Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Mon Nov 16, 2015 10:19 am

I've just been to private eye dr again, he said they are definitely not right, inflammation and swelling, there is something fundamentally not right with me, I have too many symptoms and is writing to GP recommending I have a trial of thyroxine for 6 weeks as he feels hypo could be the answer and if not at least it will rule it out. He's not a fan of guidelines and said people in grey areas still need to be treated and it's not like it's going to kill me, if I feel worse I stop.
I've tried to make appt for next week but nothing available so I will have to go on telephone consult and pray that they let me have it. Or give me a justifiable reason why not.
Any advice f I get a knock back.
Thanks Amanda xxxx
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Re: Long time away

Post by Hadleigh on Mon Nov 16, 2015 10:55 am

Sounds hopeful Amanda, ideally you need to try Levo for longer than 6 weeks, 12 weeks would be better as it can take that long for your bod to adjust but if your GP does agree to a trial then just take whatever he is willing to give you, if it does improve things then he can't refuse to keep prescribing.
If he won't play ball with the trial then possibly all you can do is bombard him with studies that show in your case given all your symptoms and dodgy results a trial of Levo is justified.
Good luck, I really hope this works out for you.
Love
Nelly xx
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Re: Long time away

Post by Tigerlily on Mon Nov 16, 2015 11:51 am

That is such a breakthrough, Amanda!! I'm so pleased that you have someone on your side who is willing to take on your GP! We should put some flags out here for you for this and I hope this unexpected move forward makes you feel somewhat better.

Keep calling the surgery for an appointment - they will eventually squeeze you in somewhere just to stop you calling in for a cancellation each day!

Love and Big Hugs from Tigerlily xxxx

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Re: Long time away

Post by Amanda Lynne on Mon Nov 16, 2015 10:29 pm

Thanks Ladies I do feel grateful that at least one dr is on my side. I just hope that the GP will agree to the trial. I think if they don't then they need to prove to me that my symptoms especially my eyes are due to something else and definitely not thyroid.
I will have to wait until they get DR's letter before I get appointment. I will keep you posted on this, keep everything crossed for me.
Love Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Fri Nov 27, 2015 12:54 pm

I have at last received the copy letter which has gone to GP. In it the eye dr says on the basis that individuals do not necessarily fit int chemical numbers, I would suggest trying her on six week course etc etc. I would be grateful if you would prescribe this for her. I've sent copy to rheumatologist who rang me and said he was more than happy for me to do this trial before we do any steroid injections to see if it's the answer.
I have appt next week with the very difficult GP !!!!! Only appt available for 3 wks, wish me luck.
A xxxx
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Re: Long time away

Post by Tigerlily on Fri Nov 27, 2015 1:04 pm

Grrreat news, Amanda! Let's hope this does the trick for you, to at least rule out the simple thing first, i.e. low thyroid function.

Best of Luck and many Hugs from Tigerlily xxxx

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Re: Long time away

Post by Hadleigh on Fri Nov 27, 2015 1:11 pm

I really hope this works Amanda, maybe the GP will be in jolly Christmas mode and in a good mood Smile

Love
Nelly
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Re: Long time away

Post by Amanda Lynne on Fri Nov 27, 2015 2:08 pm

Omg he's just rung me and said I've got letter I'm writing prescription 21 days 25mcg then 21 days 50 mcg. He didn't say much more no advice or what to do when I've finished but I'll take that.
Amanda xxxx
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Re: Long time away

Post by Amanda Lynne on Fri Nov 27, 2015 2:12 pm

Any advice of when to take, what with and when to take ppi, I usually take that in the evening.
Thank you A xxxx
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Re: Long time away

Post by Tigerlily on Fri Nov 27, 2015 4:12 pm

I think the main thing is to take the thyroxine at least one hour away from any food, which is why I take it last thing at night, but I'm sure Nelly will give you the best advice, Amanda.

What a result!!

Love and Hugs from Tigerlily xxx

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Re: Long time away

Post by Admin on Fri Nov 27, 2015 4:22 pm

Great news :-)

Levothyroxine is absorbed in the gut.

To maximise absorbption, you should take Levo with water only and at least 1-hour away from food, other medication and any drink other than water.

Some medication can inhibit the absorbption of Levo, so it is a good idea to check for contra-indications.

Levo will take between 4 to 6 weeks to take full effect.
25mcg is a typical starting dose.
You may initially feel a little better after around 2 weeks, but this is likely to wear-off and you should then be looking to increase the dose in 25mcg steps until your Free T4 blood level is in the upper half of the range.

What is important is to ensure that your FT4 is tested in addition to TSH.
The target is to get TSH below 1 and the FT4 between 18 and 22.


I find it more effective to take my Levo at night, even though the recommendation is to take it in the morning.

Most hypothyroid people will feel much improved on around 75mcg - 100mcg of Levo.

However, around 15% have complications, which can limit the conversion from T4 to T3, and/or the absorbption of T3 at a cellular level.
If this happens, it is important to also test the Free T3 level.
Unfortunately, there is currently no way to measure absorbption of T3 at the cellular level.
Blood tests on their own do not give the full picture, so symptoms are also very important.

Edwin
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Re: Long time away

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