Total Thyroidectomy

[Gigi62]

Any one had experience? I had a total after five subtotals. I do feel my GP hasn’t a clue!

[pennyannie]

Hello Gigi

Can you please give us more information :

When and why and what medication are you taking - and have you any recent blood test results and ranges to share with us.

[Gigi62]

I’ve been on 200mcg for decades. Had my total in 1992, when I lived in England. I still feel like it makes no difference. Just wondering what to ask for at the next test. As I have no thyroid at all I assume I’m neither hyper nor hypothyroid?

[pennyannie in reply to Gigi62]

Hey there

Well, a fully functioning working thyroid would be supporting you on a daily basis with several thyroid hormones, trace elements of T1 and T2 and calcitonin plus approximately 10 mcg of T3 + 100 mcg of T4.

T4 - levothyroxine is a storage hormone that needs to be converted by your body into T3 which is the active hormone that the body runs on. T3 is about 4 times more powerful than T4 and read the average person needs about 50 T3 daily just to function.

Your body's ability to convert the T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels so would suggest in the first instance to arrange a full thyroid blood test panel to include TSH, T3, T4 thyroid antibodies and the vitamins and minerals as detailed above.

When with the results start a new post with the results and ranges and you will receive a considered opinion on everything - this is where I started a few years ago and this amazing forum has been instrumental in my recovering my health after thyroid ablation for Graves disease back in 2005 and my becoming seriously unwell in around 2014.

As you haven't a thyroid, like me, you are hypothyroid and presumably dealing with disabling symptoms that you do not find relieved by your dose of Levothyroxine.

Arrange a blood test for first thing in the morning, refrain from taking your Levothyroxine before the blood test, thereby leaving 24 hour gap between dose and blood draw, and just take water on the day of the blood test, thereby providing as clear a picture as possible of your levels.

There is much to read and suggest you take a look at the Thyroid uk website where you will find all the information necessary to start your journey back to better health.

[Gigi62 in reply to pennyannie]

Thanks. I was diagnosed with Hashimotos years ago went I went into thyroid storm. I’ve just never found that medication has made any difference. Lethargic weight gain hair loss hoarse voice. Feels like I’m at day one ! Will arrange the full test and report back. I take Vit D as we are geographically challenged!

[SlowDragon Administrator in reply to Gigi62]

Do you always get same brand of levothyroxine

Which brand

What vitamin supplements are you currently taking

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 had autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

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...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Please add most recent results and ranges if you have any

Or come back with new post once you get full results

[jgelliss in reply to Gigi62]

I'm so sorry you had to have TT. I too had TT and was dosed on very high dose of T4 sole. I experienced many symptoms . Palpitations insomnia, fatigue, weight issues , irritable , anxiety,jaundice, fatty liver etc. I had to become pro active with my thyroid journey. Since I was getting no satisfactory resolutions from Dr's/Endo.

With time I read a lot and joined this great forum and got empowered to switch Dr's that where open minded and out of the *Box* and where willing to listen that I was not feeling well with T4 only. I am not a good T4 to T3 converter. A healthy thyroid has T3 T4 and more . I no longer had my own thyroids and now I was reliant for my thyroids in a bottle. The heart has a big receptor sight for T3 that my heart was just not getting enough of . It was very concerning and debilitating to say the least.

Gigi62 I would advice you to look for a Dr if your current Dr does not want to work with you.

Best Wishes.

[Gigi62 in reply to jgelliss]

Unfortunate I live remotely and have no choice of GP. You have just listed all my symptoms. I think I need to be armed with knowledge and make them listen to me.

[jgelliss in reply to Gigi62]

It's true that getting empowered and and getting a great handle of our situation with perseverance will get you where / how you personally need to feel . I feel your pain . But don't get discouraged . Ultimately your symptoms are telling and not some lab results. Lab results are just a snap shot the moment your labs where done. Symptoms are cellular results. Keep journoling your symptoms . Get copies of your lab results write on them the dose you where on at the time. Hold on to the lab results for future references. Get yourself familiar with the numbers of FT4 FT3 TSH and how you feel.

Best Wishes.

[Hidden]

Congratulations, I had a mere 3 operations!

Having no thyroid at all gives you the equivalent of hypothyroidism, when all the essential hormones normally provided by a healthy thyroid are totally absent.

In that state it is normally accepted that you will only ever regain any form of normal life without symptoms if you start taking NDT.

It took 8 years for me to discover that fact. As soon as I took NDT I recovered immediately, within just a few days.

[Gigi62]

No idea what brand as they are all dispensed into my pill box. I take 9 other meds at the same time so that’s probably wise advice to separate them off . I think last thing at night makes far more sense for me.

[helvella Administrator Thyroid UK in reply to Gigi62]

You can always identify them by their markings.

Just post the markings (both sides).

[Gigi62 in reply to helvella]

T and Tc

[helvella Administrator Thyroid UK in reply to Gigi62]

Sorry for the delay.

That is Accord 100 microgram levothyroxine.

(Formerly branded Actavis.)

[pennyannie in reply to Gigi62]

It is important to know what these other medications are and what they are prescribed for as this may have a direct bearing and interact with your thyroid hormone replacement medication.

P.S. Where are you living now ?

[Gigi62 in reply to pennyannie]

I’m in Shetland taking stroke meds and painkillers so it’s hard to find a window to take separate med!