Introduction and advice: I'm most grateful to... - Thyroid UK

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Introduction and advice

Offshore profile image
14 Replies

I'm most grateful to have found this site and as I new member have already read many useful posts. Thanks to all the people who have taken time to give advice and comment, its so helpful.

I am seeking advice for my wife who was diagnosed Hypothyroid some years ago.

She is on Levothyroxine and has begun experiencing worse symptoms which suggest her current dose is not satisfactory. Her GP ordered the usual NHS blood test and all came back fine. We are not convinced.

Of course we accept the need to go private etc and one of the first things I intend to do is order a private pin prick blood screening, as recommended in many posts here, to get a proper grasp of all the levels. Once we have these, would it be best to take the blood screening result to a private endo or GP to analyse things?

If so, is it any more likely that she might be able to obtain a prescription the T3 (which we suspect she has needed for years) .

I am aware this will all cost a considerable amount but its worth it if it yields better health in the medium and long term for my long suffering wife,

Thanks again,

Dave

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Offshore
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14 Replies
MissGrace profile image
MissGrace

Hi Dave, I’m sorry to hear your wife isn’t well. There are lots of people on here who will give you advice about private blood tests and I’m sure they will reply with information - particularly the administrators. I have a private endo who helps his patients source T3 and who will give you a private prescription. He also monitors me closely and advises my GP. My GP always follows his advice and even does the blood tests he requests (fortunately for me - my GP recommended this private endo, so I suppose he has to follow his advice!) if you give people on here the area you are in, they will be able to recommend an endo if they know one in that area. I hope your wife gets the help she needs and feels better soon.

Offshore profile image
Offshore in reply toMissGrace

Thank for the good wishes and quick reply Miss Grace, much appreciated!

It sounds like you have been well advised and cared for by your endo and GP, which gives me hope to obtain this for my wife. Good to hear things are going well for you.

I see I already have a further reply (from Seaside Susie) and will follow her advice.

Once we have the full screen I will post this on HU and can then ask for recommendations for private endos in the area. I will post again with the test results and take things from there.

Thank you and very best wishes

Dave

SeasideSusie profile image
SeasideSusieRemembering

Offshore

The best test to get is the full thyroid/vitamin/mineral bundle which can be done by fingerprick or venous blood draw

Medichecks UltraVit is best value at the moment as it's on special offer. If the offer has finished by the time you order, then during September you can use code MED99 for 30% off any tests not on special offer

medichecks.com/thyroid-func...

Post results on here for interpretation, it's free :) then you can decide where you go from there.

In the meantime, you can send for the list of thyroid friendly endos from Dionne at ThyroidUK

tukadmin@thyroiduk.org

You can also make a new post asking for recommendations for endos in your area. Replies will have to be by Private Message so the post will get closed to replies but you will get notification of PMs sent to you. You may be lucky and be able to see the one MissGrace uses, they are very few and far between though!

Offshore profile image
Offshore in reply toSeasideSusie

Hi Seaside Susie,

Thanks so much for the quick response. much appreciated.

That is most useful information, especially the type of test most appropriate (and not forgetting the voucher code :) )

Once we she has the result back I will post it on here for interpretation. I have the list already from Thyroid UK.

Thank so much and best wishes,

Dave

SlowDragon profile image
SlowDragonAdministrator

As SeasideSusie says, first step is full thyroid and vitamin testing privately

Come back with new post once you get results and ranges for advice

If you email Dionne at Thyroid Uk in the week at

Admin@Thyroiduk.org.uk

Request the list of recommended thyroid specialists to see if there’s one near you

You can put up a post asking for private messages from anyone on any specialist you think you might wish to see

Offshore profile image
Offshore in reply toSlowDragon

Hi SlowDragon, thanks so much..

Yes good advice there by Seaside Susie.

I will come back and post once these tests have been done. I had previously emailed another lady at T.UK who sent me a list of NHS and private Endos, I guess this will be the same information you refer to here?

There appeared to be only one specialist in our area (Somerset). We will obtain results and take it from there.

Best wishes,

Dave

jgv2018 profile image
jgv2018

Has the manufacturer of your wife's levo tablets changed ? Some manufacturers have changed the formulation of their tablets. Teva have changed the formulation of their tablets and replaced lactose with mannitol, this has caused me huge problems, despite having taken levo for over 30 years. In France Merck changed their formulation changed to include mannitol and there 9000 adverse side effects reported between March and September 2017. It may be worth your while to check that the pharmacist hasn't given you a different make of tablet with different ingredients.

Offshore profile image
Offshore in reply tojgv2018

Thanks for getting back to me jgv2018. I was not aware of that and as we have a really good pharmacist locally I will check this out with him. Thanks very much!

Sorry for your troubles. Whatever you do please post the blood test results with the ranges on here there are very knowledgeable people here who will help your wife.

Offshore profile image
Offshore in reply to

Thank you Bunnyjean. I will definitely come back on here and post the test results, great knowledge and support and advice.

You probably know this already but just in case. Take the test first thing in the morning on an empty stomach. Leave of the Levo for 24 hours prior to the test.

Offshore profile image
Offshore in reply to

I did read this somewhere before but most useful to have your kind reminder. I will make sure she is aware of this before taking the test. Thank you!

SkyBelle profile image
SkyBelle

Post 2 yrs Levo treatment, am Hypothyroidism due to the Cancer treatment, certainly not complaining, am lucky to be alive. But!! I am listening to my body, luckily I am supersensitive, cannot tolerate a cheap brand of Levo, am on WOCKHARDT Levo.

It seems I was over medicated, I believe, the Blood TSH results don't suit every one. I have halved my dose, am walking 5 miles daily. It took me a while to get this far. Spoke with many Chemists who knows what is happening out there. Anyway, my research has worked for me. Just keep going, check out the fillers. Ugh!

Offshore profile image
Offshore in reply toSkyBelle

Hi SkyBelle,

You must have been through a lot, so glad you are still with us and making some good recovery by the sound of it.

Its great you have been able to establisg exactly what was wrong in your medication and make the right change. So glad its helped you feel better.

We will keep going and check for fillers etc. Many thanks

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