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It's a miracle

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It's a miracle

Post by rach260190 on Thu Apr 09, 2015 2:36 pm

I just want to say thank you to each and every one who has helped me as I wouldn't be this far without you all.
yester I went to my app with the surgeon I thought it was going to be cancelled but it wasn't ! 
It with the surgeon on his own and he put me on the list.
I am over the moon with happiness and excitement. 
The waiting list is very long but at least I know now I will be helped.
I want to ask to go on the cancellation list but I know that's a lot to ask as everyone probably does! 

Thank you all so much 

Rachel xxx

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Re: It's a miracle

Post by Hadleigh on Thu Apr 09, 2015 3:17 pm

Congrats Rachel cheers did Mr M say how long roughly? I waited 7 months for the op but that was when SM had just opened and everything was chaotic, mind you its still chaotic as far as I can make out Rolling Eyes

Nelly
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Re: It's a miracle

Post by rach260190 on Thu Apr 09, 2015 3:29 pm

Thank you so much !!!
He was so lovely to me yesterday it was in a totally different environment in the general surgey department. 
He said I can stay on the cinacalcet until the op. 
And he said my surgery would be later on in the year ? So I  have no idea how long that is. I guess I will recieve a letter and a pre op date. 
Is it worth going on a cancellation list ?

Eeekkkkk so excited ! He said he will do a sub total op if there is no adenoma which he doesn't think there is 

Xxxx

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Re: It's a miracle

Post by Little Audrey on Fri Apr 10, 2015 12:07 am

GREAT news, Rachel!!!! That is wonderful!!!! I remember that feeling so well! When I read Dr. Norman's email diagnosing me with this awful disease, I sat here and cried!!! Then I called everybody I could think of to tell them!!

It is a shame you all have to wait so long for the surgery though. Crying or Very sad I think it was about 2-1/2 weeks from day Dr. Norman emailed me until I was in Tampa for the surgery. I can't imagine waiting for months! That is awful!

But anyway, YAY for you!!!!! At least you know you will be well again now!!!

Audrey

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Re: It's a miracle

Post by Tigerlily on Fri Apr 10, 2015 5:48 pm

Hi Rachel - soooo pleased you are on the list for surgery! Doing a dance of celebration for you here as we "speak" !!

It's a good idea to ask them to offer you a cancellation if there is one. I'm sure they want to fill any spaces they might get. I told them I would take a cancellation and even go into hospital over Christmas, and they called the next week with a cancellation date for me!

Just one thing: What did the surgeon mean by:

"He said he will do a sub total op if there is no adenoma which he doesn't think there is "

Just curious.

Love from Tigerlily xx

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Re: It's a miracle

Post by rach260190 on Sat Apr 11, 2015 9:03 am

Hi tigerlily
thanks so much! None of this would have been possible I don't think unless it was for everyonea help and info. I am very great full. 

I'm assuming I will have to have the pre op before I could be put on the cancellation list and that could take a couple of Months.  But I will be asking and investigating. 
He said I either have a tiny adenoma or most likely 4 gland problem because of my age ect... I'm my mind all 4 calcium sensing receptors are faulty But I may be wrong.

In the mean time I have another battle commencing and if I could kindly ask Nelly for some advice. 
I was diagnosed with primary hypothyroidism. Then it when over active from December last year until Feb. It's been swinging about like this all my life i feel but the episodes have been getting closer together.
my last tsh 3.7 in middle of Feb. .. 4 weeks before is was 0.05 or 0.005 I think. 
I'm going to my god Monday to ask if I can go back on thyroxine when I have a hypo phase.
I checked my labs and there were some anti bodies present but not high. 
So is it possible that if I ask my gp she will let me go back on it..... I know 3.7 is in the normal range but I was having symptoms and they have got worse 

Rachel xxx

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Re: It's a miracle

Post by rach260190 on Sat Apr 11, 2015 9:26 am

*Gp haha not god

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Re: It's a miracle

Post by Tigerlily on Sat Apr 11, 2015 11:34 am

Hi Rachel - at least it sounds as though he's going to look at all 4 glands - that's another hurdle over for you - so pleased!

I'm sure Nelly and Edwin will reply about your thyroid issues - I have had great help from them myself.

There is some interesting research that seems to indicate that in some instances it is possible to become hyperparathyroid after treatment for hypothyroid with thyroxine. This appears to be what happened to me, but I can't be sure.

I'll dig out the links to this research - it was originally found by Simon on the old forum.

After I had told the Hammersmith that I would take a cancellation, they called the following week to ask me to go for the pre-op checks almost immediately as they had a cancellation the following week. Be prepared for it to happen quickly!

Love from Tigerlily xx

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Re: It's a miracle

Post by rach260190 on Sat Apr 11, 2015 11:42 am

Wonderful that's really helpful thank you. ...
yes I can seem to stabilise my thyroid. It's so frustrating. 
Imean worried when I go to my gp they won't let me start taking the thyroxine again because the tsh was 3.7 and I know some Dr's won't start treatment until it's higher. 
The swings happen so quick and I can feel it.
not sure what to say and how to ask to start it again.

I think if I remember rightly Nelly had a long wait for surgery.  Not sure if she was on a cancellation list. I think general surgery takes longer for a date because they do so many different ops.
maybe I should ask the Secretary if it is possible to go on the list. I guess I should wait for the pre op before doing this 

Rachel xxxx

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Re: It's a miracle

Post by Hadleigh on Sat Apr 11, 2015 11:44 am

Hi Rachel

He told me he would do a sub total op if no adenoma showed up so don't assume the worst just because he said that. Also remember scans can be wrong, the location of my adenoma was different than shown on the scans so although yours were negative you might just have something very obvious when he gets in there.

Now to thyroid, sounds like you may have hashimotos where you swing from hypo to hyper. You can't take thyroxine just when you are in a hypo phase because thyroxine doesn't work like that, it needs to build up in your body and takes 4-12 weeks to have full effect and about 4-6 weeks to come off it so you can see that wouldn't work just stopping and starting. As your levels went to far the other way when you were on it before you would need to possibly start on a very low dose 25mcg and stick on that for a good 3-4 months to see how it affects you.

The issue is that after your surgery your thyroid levels will likely change anyway so you may be better waiting until then to see if you are better or worse, its probably not something your GP can deal with unless he/she is very up in thyroid matters, can you run it by your endo ? not easy having the 2 problems running alongside each other and don't I know it Rolling Eyes my thyroid levels are still unstable after surgery but its impossible to get any doc to accept that.

So you could try thyroxine again but you have to take it all the time not now and again when you think you are in a hypo phase, if you have hashis then eventually your thyroid will be destroyed but that can take many years, in the meantime you have to deal with the ups and downs which is difficult.

Hope that helps, shout if you have any more questions.

Nelly
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Re: It's a miracle

Post by Hadleigh on Sat Apr 11, 2015 11:59 am

The nurse at my pre op said the op date would be in a few weeks, it arrived 6 months later !!!! I only just avoided having to have another pre op assessment as the first on was just about out of date.

As my op took a lot longer than planned there were several thyroid ops booked in after me that had to be cancelled so even getting as far as the operating table is hit and miss.You need to be first on his operating list to be sure of getting it done on the day Wink
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Re: It's a miracle

Post by rach260190 on Sat Apr 11, 2015 12:43 pm

Unfortunately I don't think I'm going back to my endo I've just been put on the waiting list.  So I guess I will heave to goto the dreaded gp for help. I think they have stopped my thyroxine pescription ! So I can't get anymore unless they agree to start it again and I don't think they will without the go ahead from my endo.
The swings happen quite frequently I'm all over the place. I don't even think my endo has considered it could be hashish but I'm pretty sure it is. 
So if I still have my diagnosis of hypo can I still have my thyroxine started again ? 
I have no idea how to ask my gp to start me on 25mg but I really need something. 
Ahhhhh I don't know what to say to her ! 
Rachel xxx

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Re: It's a miracle

Post by Hadleigh on Sat Apr 11, 2015 1:10 pm

If the endo stopped your thyroxine because she thought you didn't have a problem then your GP may not be willing to go against that decision. Can you be sure the symptoms you are getting are thyroid and not hpth ? both overlap with symptoms so very difficult to tell which is which and you don't want to be taking Levo if you don't need it.

Do you have TSH T4 and T3 results to hand ?

You could say to your GP that you still feel your thyroid is not right and could you try Levo again to see if it helps, he/she could call the endo for advice but I would think it quite likely they will want to wait until after the op, don't know you may be lucky.

Nelly
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Re: It's a miracle

Post by rach260190 on Sat Apr 11, 2015 2:39 pm

Very true ! It's hard to tell. I don't have my results with me at the moment. 
When I was diagnosed with hypo my tSh was 8.9 and free to 11.9 so they said it was borderline.
It then when hyper at 0.005 with a free to of 25.0 and free t3 of 6.9 which was just over I think. My free t3 has always been borderline high no matter what my free t4 was.
my last test was just tsh at 3.7 and I was having symptoms.
really bad heart palps and aches and tiredness. 
Mr m asked me about my thyroid and I said I wasn't taking it anymore he told me to get it checked every now and then. 
My endo said it may correct itself after surgery but it may not. 
So I'm going to give it a go on Monday and ask about starting again.... They are normally quite good and go with what I say but.......
like you said I don't think they will let me start it again if in my notes it's been stopped. But I do believe I need it at a low dose. 
I think this will be a tricky one as one don't really know what's going on and if after surgery it will get better. 
Rachel xxx

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Re: It's a miracle

Post by Tigerlily on Sat Apr 11, 2015 7:52 pm

Here are the details for the papers on links between hypothyroidism, thyroxine treatment, and hyperparathyroidism.

pubmed/6849322
pubmed/8441313
pubmed/1138158
pubmed/1138158

Love from Tigerlily xx

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Re: It's a miracle

Post by rach260190 on Sun Apr 12, 2015 1:39 pm

Thanks tigerlily. 
I will try and have a look. I don't think I will have much luck trying to ask if I can start thyroxine again with a gp. I just want something to control the swings.
is it possible a gp ill understand a swing from 0.005 to 3.7 in 3 weeks is right. ... I don't how that could be medicated. 
I'm worried of being left Unmedicated. 
How am I going to try and explain this one hahaha xxxx

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Re: It's a miracle

Post by Tigerlily on Sun Apr 12, 2015 5:23 pm

Yes, I can see how difficult that might be!

The other possibility is that the results were not right in one of those tests, so once again it might be a question of getting your GP to agree to regular testing of THS/Free T3/Free T4 and to throw in Calcium/PTH/Vit D to keep tabs on these at the same time whilst awaiting the surgery. I would ask for every 3 weeks or so, but you might have to agree to 4-6 weeks.

Let us know how it goes with the GP.

Love from Tigerlily xx

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Re: It's a miracle

Post by rach260190 on Sun Apr 12, 2015 5:56 pm

Thanks tigerlily
my gp is normally quite accommodating.  But on my.last clinic letter it says thyroxine stopped. .... so I very much doubt they will go against that. 
Maybe if I say I have already started taking 25mg. ahhh !!!
I am able to have my bloods checked regularly anyway but they don't seem to understand I still have hypo symptoms at a tsh of 3.7 the top of the range is 4.2 so my last one was within range but I was feeling pretty rough.
I have 4 boxes of thyroxine left as last time I tryed the repeat pescription it worked but it may now be rejected.
I've been collecting the thyroxine just in case ! 
It's one thing after the other and I really need to get it right. 
I need to plan what to say carefully but I doubt they will let me start it again Sad 

Rachel xxxx

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Re: It's a miracle

Post by Tigerlily on Sun Apr 12, 2015 6:07 pm

Good luck, my Dear !  Things worked out well with the surgeon, so they could well do again.

Tigerlily xx

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Re: It's a miracle

Post by Hadleigh on Sun Apr 12, 2015 6:58 pm

TSH naturally changes in everyone and its possible to get 2 different readings from the same blood test, you also can't compare results if done at different labs.

It would be very unusual for any lab to do repeat thyroid tests less than 6 weeks apart especially if the results are "normal" and you are not on any meds and changing dose, even then they would insist on 6-8 weeks, the labs call the shots and can and do refuse to do the tests.

Rachel you need to see what your T4 ans T3 are really as TSH alone is not a reliable test.

Nelly
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Re: It's a miracle

Post by rach260190 on Mon Apr 13, 2015 5:24 pm

I've just got back from my gp appointment I have a nickname of the complicated one. 
Thankfully I have been allowed to start 25mg of thyroxine with regular blood test for calcium. 
I explain my symptoms at a tsh of 3.7 tiredness and heart palps. .... she couldn't understand that hypo could cause heart palpitations ? Or maybe that just me and calcium swinging about. 
She said I have to be careful as most people feel better slightly over active and they don't Want that to happen again.
So I have a new pescrtption for 25mg and see how that goes.

Rachel xxx

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Re: It's a miracle

Post by Hadleigh on Tue Apr 14, 2015 6:09 pm

Well done, 25mcg is a very low dose so may not make that much difference but better to stay on that for a good 8+ weeks before even thinking about increasing.

GP is mistaking "slightly over active" with "the correct dose" ! they prefer to keep us all undermedicated !

Hope it goes well

Nelly
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Re: It's a miracle

Post by rach260190 on Wed Apr 15, 2015 8:53 am

Agreed!  I've found gp's to be very uneducated on thyroid matters. 
She did agree that I most likely have hashimotos because of the swings and I have a low white blood cell count. She also said I will most likely if I haven't already end up perminantly hypo.  So this maybe be another phase or finally I have settle in hypo.
she said it was usual for the swing to be so close together and going from hyper to hypo in a month is unusual. I think she may have thought It was a lab error and was reluctant to give me a new pescription. 
I just want the heart palpitations and thumping to stop when I'm hypo and sleeping in the afternoon. 
Confusing! !! Maybe thyroxine doesn't agree with me and something else would be better but that's a bother battle 

Rachel x

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Re: It's a miracle

Post by Little Audrey on Fri Apr 17, 2015 2:19 pm

It is so hard to get the thyroid levels just right for some of us.   

Rachel, I have no idea how your doctor is treating you with no T3 or T4 levels to look at.    As Nelly started above, you need those levels to successfully treat a thyroid issue.    

I will be posting something about my thyroid on my thread 'New Lab Results' very soon.    I can't seem to get mine right either, but I'm going to be trying something new very soon.    I will explain that in that other thread.

Audrey

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