Private endo: After many years of suffering with... - Thyroid UK

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Private endo

Desperate-Suzi profile image
13 Replies

After many years of suffering with severe depression chronic fatigue - my psychiatrist ( who I have to pay for) suggested I see a private endo and made a referral for me. I have my first appointment with this endo on Friday. Is there anything I need to mention (specifically ) apart from my obvious symptoms.

I am currently taking 150mcg thyroxine which my Gp wants to reduce as I had a blood test ( which I wasn’t expecting ) and my tsh was under normal range. ( I had taken my thyroxine that morning ) when usually I don’t take it the morning I have my bloods done.

Any advice would be appreciated. I am desperate for some improvement in my symptoms as an array of anti depressants have not relieved my depression.

Many thanks 😊

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Desperate-Suzi profile image
Desperate-Suzi
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13 Replies
Km27 profile image
Km27

Get them to do an insulin stress test. This will show how your body reacts under stress and what hormones work and is the only way to see if you have growth hormone deficiency. I had this done 3 years ago and they found out I have hypopituitarism. My pituitary gland doesn’t work so therefore I take various different hormones. I also had depression and no quality of life. I had an mri before they did this as it was thought I had a pituitary tumour but didn’t, luckily they persisted and did the stress test. It will show cortisol levels too. I always get a call from my gp after a blood test telling me my tsh is low and I am over medicated, however with a pituitary problem they should know to disregard tsh readings!!!

Good luck 😉

Desperate-Suzi profile image
Desperate-Suzi in reply toKm27

Thankyou so much for this advice I will definitely bring this up on Friday x

JAmanda profile image
JAmanda

I'd get the tests done again - privately if necessary - with tsh t4 and T3 - so you have all the right info (plus your report on your current symptoms) when you see the Endo. Obviously don't take your meds before the test! 😏

McPammy profile image
McPammy

When you speak with your Endo in Friday request a T3 test along with T4 and TSH. You might not be converting very well. Low T3 can cause depression as well as many physical symptoms.

You could also do the DIO2 gene test through Regenerus Laboratories. They will check if you have this faulty gene. If it’s positive which means you are a very poor converter T4 to T3 then you’ll definitely need T3 medication. I did this and now have T3 which has transformed my life. This gene test is simple to do costs £165 approx if you have the test plus a qualified person to call you interpretating the result. I’d never heard of it before I joined Thyroid UK nor had my GP! It’s been a life saver for me being prescribed T3.

T3 can only be prescribed by a psychiatrist or an endocrinologist. So there lies to issue that T3 can effect you mentally as well as physically.

Looking at a previous post of yours,your T3 is too low!!

Desperate-Suzi profile image
Desperate-Suzi in reply toMcPammy

Thankyou I will take the gene test - I’m happy for you that you have got a result and are feeling better - it’s so debilitating being exhausted with no motivation. I’m a single parent and I have to force myself to do what’s right for my son life’s just so hard x

TSH110 profile image
TSH110 in reply toMcPammy

I think cardiologist can prescribe it too, as it has a powerful effect on the heart

McPammy profile image
McPammy in reply toTSH110

My cardiologist didn’t know about prescribing T3 when I saw him after a multitude of heart tests. They thought I may have had bradycardia but it was under medicated thyroxine.

I think some are worried about it if you are taking high doses. Mine was fine with my prescription and that it made me so much better than I’d been in years.

TSH110 profile image
TSH110 in reply toMcPammy

That’s great news. My heart pains really reduced once I started on NDT, they had become progressively worse on Levothyroxine monotherapy worse than before treatment and they were not great even then. I am sure I had problems because of unstable T3 levels as my thyroid croaked and then inadequate T3 on T4 only hormone replacement. I don’t need any endocrinologist to accord or tell me otherwise.

SlowDragon profile image
SlowDragonAdministrator

We always recommend getting FULL thyroid and vitamin testing...ideally do so BEFORE consultation (as usually cheaper) plus important to test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

But not enough time to do that now

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Desperate-Suzi profile image
Desperate-Suzi in reply toSlowDragon

Thankyou I think it’s probs too late now to do tests ! Maybe I can ask him if I can get the tests done myself so I don’t have to pay full whack x

SlowDragon profile image
SlowDragonAdministrator in reply toDesperate-Suzi

Good plan......especially if they want to test at or after appointment

If taking any supplements that contain biotin you need to stop these a week before ALL blood tests (good excuse to get own testing done)

Very important to test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

shaws profile image
shawsAdministrator

Tell GP to give you another test and tell him/her that your results are wrong due to you taking your thyroid hormones shortly before the blood test. (I doubt the majority of doctors are aware that TSH is highest early a.m. and drops throughout the day.)

Dillongirl profile image
Dillongirl

Wow! this is ringing so many bells with me. Sometimes I get a sensation under my sternum and at the base of my throat, especially when tired towards the end of a busy day. This is unsettling as it is almost similar to the arrhythmia I got before having a pacemaker.

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