Help please!: I was diagnosed hypothyroid 5 years... - Thyroid UK

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Help please!

janiebell profile image
12 Replies

I was diagnosed hypothyroid 5 years ago in my early 40's and now take 125mg of levothyroxine. I have always tolerated it well and when the dose is right feel more energetic and optimistic. I have hashimotos and avoid gluten and night shades (really does make a difference) and generally do what I can to help myself. I have bupa which I can just about afford but to see a consultant I have to pay consultancy fees which really add up on top of excess. I made an appointment to see an endo at the London Clinic because my gp won't test anything other than tsh and it's always a struggle to get ferritin, vit d etc tested. I am menopausal with hot flushes and other delightful lack of Eastrogen symptoms! I have been feeling tired and irritable and also a sense of everything being a bit too much so I don't socialise in the way I might want. I'm not depressed and I look after my adrenals by not taking on too much but this procrastination, rather sit at home feeling is horrid and not me. New physical symptoms are aching hands that are numb and tingly in the mornings with stabbing pains in fingers and feeling wiped out, ie falling asleep in the bath after a busy day. It's hard to know what is just age, menopause related and how good I can expect to feel at 50!

If I'm going to splash out valuable cash on the endo I need to make it worthwhile. What tests should I ask for? My tsh usually sits below 1 but no idea about t3 etc so I'm having a full thyroid panel done. My ferritin and b12 are never optimal so I'm asking for those along with vit d. Any other thoughts? This really is my chance to get a full picture.

Many thanks.

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janiebell
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12 Replies
humanbean profile image
humanbean

Instead of paying out good money on an endocrinologist just to get tested thoroughly, why not pay for the tests yourself without seeing an endo? Then you can decide what you want tested. Since you have insurance I may be wrong and the endo works out cheaper than ordering tests of your own.

The two tests that I get done when I want a thorough check are these two :

1) gdx.net/uk/product/140 Take a look at the analytes and requirements and also the links in the Additional Resources box.

2) privatebloodtests.co.uk/ I get the Comprehensive Plus V test done (listed near the bottom of the page). To keep the cost of this one to a minimum, register with the site and use the coupon code given in the banner at the top of the page. You have to live within travelling distance of a Spire Hospital to get this one done.

In both cases you need to give Thyroid UK as your doctor or practitioner.

See here for more info : thyroiduk.org.uk/tuk/testin...

janiebell profile image
janiebell in reply tohumanbean

Hi, thanks so much for the links. As bupa will pay for any tests I'm in a position to get everything done! It's just the consultation fees but I've managed to swing all the tests first and then see him in the evening for a consult and the results. They have a fantastic endo lab at the London clinic where all the the tests are done and results are back that day mostly.

shaws profile image
shawsAdministrator

Humanbean's suggestions are good. Also don't pay out for an Endocrinologist who may not be able to help you - particularly if they stay strictly to the guidelines which may not be helpful to us, the patients.

Email louise.warvill@thyroiduk.org and ask for a list of sympathetic endos.

janiebell profile image
janiebell in reply toshaws

I need the endo to proscribe t3 or up my levo if needed.

shaws profile image
shawsAdministrator in reply tojaniebell

Yes, you definitely need someone who can prescribe accurately for you as we are all different. What dose suits some doesn't always suit others.

Jayneywales profile image
Jayneywales

Have you tried asking the Endo to ask the GP to do the tests? He may respect their professional opinion?!?

Jayneywales profile image
Jayneywales

Have you tried asking the Endo to ask the GP to do the tests? He may respect their professional opinion?!?

Jayneywales profile image
Jayneywales

Have you tried asking the Endo to ask the GP to do the tests? He may respect their professional opinion?!?

Jayneywales profile image
Jayneywales

Have you tried asking the Endo to ask the GP to do the tests? He may respect their professional opinion?!?

janiebell profile image
janiebell in reply toJayneywales

It's not my GP it's the lab they use. Most nhs labs won't test further if tsh in range:(((

lucindajethol profile image
lucindajethol

Maybe your dose of Levo needs adjusting now. Menopause is a different ball game and may be adding to your problems. The physical symptoms you are experiencing at the moment were mine just before I was diagnosed with Hypo and given Levo, but I was way past menopause when I presented at my GP,s with these symptoms so no confusion there. I think its time for new blood tests to ascertain you are taking the right amount of Levo. You will also find work more tiring when you are on the menopause, and probably feel a bit more moody than usual. Be kind to yourself and give yourself plenty of ME time to relax and pamper, there is a light outside the tunnel you know. Take up some form of exercise as soon as you feel ready, you will be amazed at how much better you will feel in body and mind, I promise. If you don,t fancy exercise ie weights, or aerobic type exercise. Take up swimming it is a great all round exercise and targets every muscle in the body.

janiebell profile image
janiebell in reply tolucindajethol

Thanks so much. Really good advice:))

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