Your Advice Needed for Dr appointment

[CernCrystal]

Quick recap - no thyroid. Last year lowered to 50 mcg from 75 with low TSH reading. Then very hypothyroid with awful symptoms. Challenged Dr and now on 75 and using your advice regarding supplements. Better but not fixed. I feel I was best on 100mcg.

Latest TSH = 0.24 miu/L (0.27 - 4.2)

T4 = 19.3 pmol/L (12 - 22)

(Very interested to note that at blood draw I complained to Nurse about ineffectiveness of TSH only test for me and she looked at notes, saw I hadn't a thyroid and said - I will make sure you get T4 tested as that should always be done if you've had a Thyroidectomy).

November Test TSH with different Dr = 0.22 (0.27 - 4.2)

T4 = 20.5 (12 - 22)

Which resulted in reduction from 75 to 50.

I am now using the Emis system for my medical notes and although not everything is on there I can see that my thyroid function tests before I had it removed (2013) all had a low TSH but no treatment offered. I had thyroidectomy when it grew so large and into my chest that it affected my breathing.

All = <0.1 miu/L (0.3 - 4 miu/L)

So would I be right in thinking that the TSH is not necessarily relevant to my dosage and how I'm feeling. I will fight against any lowering of dose but wondered if there was any particular advice anyone had in order to support my case.

I intend reminding her that NICE guidelines say that TSH is a guideline for majority of patients (NOT ALL) and that treatment should include listening to patient and noting/treating symptoms.

Any advice/help really appreciated. Appointment is Monday 26th. Thanks all.

[Hidden]

You need FT3 too. Dear Lord. What a crazy dose for someone without a thyroid. You aren’t ‘hypothyroid’ by the way. You’re very undermedicated.

You can swallow all the supplements you can find and make sure that vitamin levels etc are ok - won’t make a jot of difference with that dose

As a ‘guide/starter’ dose after a TT, you should be looking at about 1.6 mcg per kg of body weight!

[CernCrystal in reply to Hidden]

Thanks will use this - I'm a big bigger than normal so that would be 128mcg! Yes correct term I should use is undermedicated. 😀

[Hidden in reply to CernCrystal]

I’m without a thyroid too. I’m a bit ‘hefty’ too and 120 mcg works for me! For me, the 1.6 mcg/kilo was spot on although it took a bit of faffing about to get there.

I wish I’d listened when they tried to apply that formula to my medication. I just assumed they were always wrong 😑

[CernCrystal in reply to Hidden]

Yes can't believe how they've reduced my meds. Felt like I was dying. I am enjoying the weight slowly coming off (avoiding carbs and gluten where poss) without trying as I know I need to reduce my BMI and weight. Feels strange to say that my aim is to be overweight!! (rather than obese!). Creeps up on you so slowly too. Thanks to all replies I've some support to take to challenge Dr next Mon. Fingers crossed!

[Lalatoot]

An average normal thyroid makes around 100mcg T4 per day roughly. You have no thyroid so 100mcg per day of levo would seem a reasonable amount.

Also your low historic TSH results establishes a trend for how your body operates.

[CernCrystal]

Thanks, I can get her to look at the historic results - they weren't showing until recently for some reason, but useful to know.

[Hidden in reply to CernCrystal]

My thyroid was functioning perfectly before it was removed for thyroid cancer. They did my TFTs before surgery and they were great - and I felt good too. Strangely - or not - my current ‘feel good’ thyroid levels on 120 mcg Levo are more or less the same.

[SlowDragon Administrator]

Latest TSH = 0.24 miu/L (0.27 - 4.2)

T4 = 19.3 pmol/L (12 - 22)

Was this test done early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

ESSENTIAL to test TSH, Ft4 and Ft3 at every test

And to test vitamin D, folate, ferritin and B12 at least annually

Being on inadequate dose levothyroxine will result in low vitamin levels

Low vitamin levels results in poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

This results in high Ft4, low TSH and low Ft3……

We see this repeatedly

What vitamin supplements are you currently taking

When were vitamin levels last tested

You also need to know if thyroid antibodies were ever tested before thyroidectomy

Request coeliac blood test before trialing strictly gluten free diet

[CernCrystal in reply to SlowDragon]

Thanks Slow Dragon:

Was this test done early morning and last dose levothyroxine 24 hours before test

- Yes - followed your advice to T

Which brand of levothyroxine are you currently taking

- Accord (50), Wockhardt (25) - was intolerant of TEVA

ESSENTIAL to test TSH, Ft4 and Ft3 at every test

- Will ask and do myself when income improves.

And to test vitamin D, folate, ferritin and B12 at least annually

- Done - all within range now.

Being on inadequate dose levothyroxine will result in low vitamin levels

- Noted for Dr.

Low vitamin levels results in poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

- "

This results in high Ft4, low TSH and low Ft3……

We see this repeatedly

What vitamin supplements are you currently taking

- D3 capsules, B Complex, Fish Oils, Omega's, B12 sublingual, liver for folate, cyder vinegre

When were vitamin levels last tested

- Feb this year, all in mid or lower range. This was before your advice and I only took D3 (prescribed) and B complex then.

You also need to know if thyroid antibodies were ever tested before thyroidectomy

- Yes 6 kiu/L (<34kui/L)

Request coeliac blood test before trialing strictly gluten free diet

- Tested, all clear. I avoid gluten and carbs where possible which has improved things, and weight is consistently dropping off now.

This journey is so complex and there is so much to learn and find out about our bodies, it is like a really complex dot-to-dot that you may never finish......

Thanks for support and help.

[SlowDragon Administrator in reply to CernCrystal]

You also need to know if thyroid antibodies were ever tested before thyroidectomy- Yes 6 kiu/L (<34kui/L)

Presumably that’s TPO antibodies as range is usually <34

Were Thyroglobulin antibodies ever tested

NHS usually refuses to test TG antibodies unless TPO are over range

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of Hashimoto’s patients never have high thyroid antibodies

If you notice improvements on GF diet ….likely it is hashimoto’s

[Brightness14]

You must feel very ill on that dose without a thyroid your dose should be much higher. Always have your FT3 tested that is the important one not the TSH.

You would be better off taking a private blood test I only take mine once a year now.

If you could buy your own thyroid medication or find a different Endo or GP that would be good. After I had my thyroid removed I was put onto 100mcg Levo and became very ill. Although my Thyroid was growing like yours it was working perfectly and I had never been Hypo. After only 6 months I joined this site as I knew that something was wrong and I started myself on NDT. Why should you suffer for years, do something about it please.

[pennyannie]

Hey there again :

The TSH was originally introduced as a diagnostic tool to help identify someone who was hypothyroid and was never intended to be used once the person was a patient and taking any form of thyroid hormone replacement as then you must monitor and dose on the Free T3 and the Free T4 readings.

Though sadly in primary care it seems doctors only seem to know about a TSH reading being the most important and only blood test necessary and rely on the computer - who probably doesn't even know you from Adam - to furnish them with the correct feedback and necessary actions, so they are compliant, with the guidelines in place.

We generally feel at our best when the T4 is up in the top quadrant of it's range at around 80% as this should, in theory, convert to a decent level of T3 at around a 1/4 ratio T3/T4 and tracking behind the T4 at around 65%.

Since you have ' lost ' your own thyroid you have lost your own natural thyroid hormone production of T3 and T4 -

said to be - on a daily basis around 10 mcg T3 + 100 mcg T4 -

with T3 said to be around 4 times more powerful than T4 -

T4 is basically inert and a pro hormone and needs - like a switch - to be flicked to on - within your liver and converted to T3 - the active hormone that runs all your bodily functions from your physical, to emotional, mental, psychological and spiritual well being, your inner central heating system and your metabolism.

For me, introducing a little T3 to my T4 medication was like a light bulb moment and the mental fatigue and heaviness of head / brain immediately lifted.

Currently doctors can't prescribe T3 - Liothyronine and you will need a referral to an endocrinologist and depending on where you live it is a post code lottery as financial constraint from CG/ICB boards seem to take precedence over some peoples health needs.

I'm being a bit previous here as we haven't the appropriate blood tests to see how well your body can convert the T4 into T3 - but it just seems logical to me to replace lost thyroid function with as full a spectrum of thyroid hormones as possible.

[serenfach]

I know this is not correct, but judging by what the GP is doing, he does not know enough about the thyroid to help you.

"Dr, you are dosing by my TSH, but as I dont have a thyroid gland, this is wrong. You need to dose me by what is in my blood due to the pills I am taking, including the active hormone, T3. This wil enable you to give me the right dose to replace what my thyroid would have given me".

It may give the GP something to think about, including the fact that you know about thyroid hormones. Good luck!