Levo and gluten free : Follow up post still not... - Thyroid UK

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Levo and gluten free

linda1313 profile image
14 Replies

Follow up post still not got hold of the right person for my thyroid results to be printed for me . I've been gluten free and low carb for 12 days now and feel so much better and actually lost 6lbs which is amazing as it has been near impossible to loose weight for a few years ..have so much more energy and sleeping better .still on 100 levo and not heard about appointment with endio yet but the difference in me is amazing . I'm hoping that he doctor will be right that i never should have been on levo .

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linda1313
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14 Replies
SeasideSusie profile image
SeasideSusieRemembering

Linda1313

"still not got hold of the right person for my thyroid results to be printed for me"

Why isn't a receptionist printing them for you? As long as a GP has seen the results then you can have them.

Speak to the Practice Manager, say that you understand that you are legally entitled to your results under the Data Protection Act 1998 and you will be along on XXXXday to pick up a copy so will s/he arrange for them to be available to you.

And from 25th May this year they can't charge you anything for them, under the new EU General Data Protection Regulations.

linda1313 profile image
linda1313 in reply toSeasideSusie

I've had this problem last year with my husband's consultant results in the end I got the right person and that did it straight away..they say its data protection ..they are my results I'm asking for don't see what there problem is .I said im intitled so if I come down and view them I will just dot down the info( it's finding time to get there while they are open)..just opened post and I have Endo appointment. Really hope he/she is someone who will actually listen as I've always been convinced my digestive system has something to do with how it feel .

SeasideSusie profile image
SeasideSusieRemembering in reply tolinda1313

Linda

Confirmation that you can have access to your medical records, therefore your results

nhs.uk/NHSEngland/thenhs/re...

ThyroidUK's article

thyroiduk.org.uk/tuk/NHS_In...

If your surgery is still difficult you can make a Subject Access Request - you can approach the Information Commissioners Office if your surgery has breached the Data Protection Act by denying you access.

Here are 2 articles confirming that no charge can be made

bma.org.uk/advice/employmen...

pulsetoday.co.uk/home/finan...

linda1313 profile image
linda1313 in reply toSeasideSusie

Thank you I'm off work Thursday i will pop in and ask then .maybe sit there untill they actually do it .even when they agreed last time took them a week to print so might be better if I sit and annoy them

Marz profile image
Marz in reply tolinda1313

Why not phone them today to say you will be in on Thursday to collect your results WITH ranges ... that you are legally entitled to have .... 😐

greygoose profile image
greygoose

Linda, you really shouldn't build your hopes up that you don't need thyroid hormone replacement. What that doctor said is pretty stupid. The fact that your results look good when taking 100 mcg levo, does not mean that you never needed the levo in the first place. They look good BECAUSE you're taking the 100 mcg levo. And it's far more likely that being hypo has affected your digestive system, rather than your digestive problem causing all your symptoms.

Good luck with the endo. :)

linda1313 profile image
linda1313 in reply togreygoose

Yes I know just wishful thinking.That is what I thought when he said I was ok from my blood results as surly if I didn't need it it would have made me hypo

greygoose profile image
greygoose in reply tolinda1313

Well, it would have made you over-medicated, anyway. :)

linda1313 profile image
linda1313 in reply togreygoose

I found these results today from 2 years ago ..(my consultant today has said he doesn't think index levo )

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Still non the wiser about my levo tests

linda1313

linda1313•12 hours ago

5 Replies

Been to endio today ( lovely man which is a bonus ) he is puzzled about my levels too and also said he wouldn't have prescribed levo with the results I have now .. cut down to 50mg for four weeks now and more bloods then to see how it is going ..found out that i have never been tested for antibodies ( which I asked them to do) also he couldn't see my first few blood results ( so annoyed as I asked my doctor if he would be able to view them and was assured he would) so if it's not my thyroid I will still have to find out what is making me so tired he did ask if I'd had a virus when this all started ( but it's 5 years ago when I first felt like this ) so I couldn't say for sure on that ..hopefully there will be more to go on in four weeks time ..sorry post is so long ..happy it's getting looked at but frustrated at not having much to go on

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SeasideSusie

SeasideSusieAdministrator

11 hours ago

linda1313

So what are your results? Please post them with their reference ranges.

said he wouldn't have prescribed levo with the results I have now

That's got nothing to do with anything. It's what your results were when you were prescribed Levo that count, and if your results are in range now it's because the Levo is working, you don't stop it or change the dose, you need the correct dose of Levo to give you results where you feel well, generally for us Hypos that is TSH 1 or below with FT4 and FT3 in the upper part of their reference ranges. And if Hashi's is present then it's best to keep TSH suppressed to help reduce the antibody attacks.

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linda1313

linda1313SeasideSusie

an hour ago

He has said he would never had given me levo as my one doctor has said as well . I've never really ever felt back to normal since taking it either ..I'm so confused now what to do .I think I'm going to try this 4 week on half dose ..if I feel worse in a week i will up it to full dose again

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linda1313

linda1313SeasideSusie

3 minutes ago

I've found two results from Jan 16 and march 16 ..in the January I had been on levo for three months and after Jan's results they increases from 50 to 100

Hope what I'm putting here is what your looking for... Really Interested what you think as I don't have a clue in what these levels need to be

Jan 2016

"Serum TSH level" 1.27 mU/L (0.27 - 4.20)

"Serum free levels T4 level" 14.4 pmol/L

(11.0 - 25.0)

March 2016 observations

"serum free T4 level" 21.8 pmol/L (11.0 -25.01)

I will get the more recent ones tomorrow as i will be at the doctor's

greygoose profile image
greygoose in reply tolinda1313

Well, those results are good. But incomplete. Without the FT3, we have no idea if you are converting the T4 to T3. So, they don't tell us very much at all. They certainly don't tell us if you needed levo in the first place. And, there are no antibodies, so we don't know if you have Hashi's. Those results just don't give us enough information to come to any conclusions.

linda1313 profile image
linda1313 in reply togreygoose

Hoping the more recent have more to show as I asked for everything to be checked. If the doctors are right and I didnt need levo what would taking It have done to me .

greygoose profile image
greygoose in reply tolinda1313

Nothing very much, because you weren't over-range. Just given your thyroid a rest! Do you not have your results from when you were diagnosed?

linda1313 profile image
linda1313 in reply togreygoose

Them two are my results when that gave me levo and then 2 months later Thursday increased after the second test..I have asked receptionist to print off all.my results since I started ..I just need to get them ..i asked last Friday so hope they are there when I go Thursday for celiac test ..I buythink I will ask nurse to do b12 test as well as seems even though I've asked in the past I may not have had one ..

elwins profile image
elwins

I am lucky at my doctors, once the doctor has seen them, I can pick up a copy of the results. Last time I rang up and half a hour later picked them up. They had printed them of and left them in a envelope at the front desk. Best of luck in getting a copy.

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