How long until results are stable?: I’m not... - Thyroid UK

Thyroid UK

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How long until results are stable?

MissSusan profile image

I’m not entirely sure how to word this question so apologies if this doesn’t make any sense.

On 25th September my levothyroxine was increased from 50mcg to 75mcg.

On 6th November I had another blood test and my results were:

TSH 1.6 miu/L [0.27 - 4.5]

T4 level 16.8 pmol/L [11 - 23]

I’ve been told to remain on 75mcg and to have a repeat blood test in 12 months time.

Is it likely that my TSH and T4 will continue improving for the duration of those 12 months or is 6 weeks between the increase and the blood test the most improvement that you’re likely to see?

I’m going to the drs tomorrow to request an increase as I really don’t want to wait 12 months feeling the way I am.

10 Replies
SlowDragon profile image

It's unlikely 75mcg is high enough dose of Levothyroxine

Your previous posts show you have Hashimoto's

Suggest you print this List of hypothyroid symptoms off, tick all that apply and go see GP.

They will almost certainly want to retest bloods before agreeing to any further dose increase

Are you on strictly gluten free diet? If not, ask for coeliac blood test (to rule it out) and vitamin D, folate, ferritin and B12 levels retested along with TSH, FT4 and FT3

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 Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine

Suggest you print out and highlight this. Request 25mcg dose increase in Levothyroxine or, if they refuse, a referral to endocrinologist (of your choice)

Email Dionne at Thyroid UK after Jan 3rd for list of recommended thyroid specialists.

But strictly gluten free diet and optimal vitamin levels are essential before considering adding T3.

I was diagnosed in feb 2017 (admittedly with a tsh of 147) and it’s only the last blood test that showed my dose should stay the same. I’ve had bloods taken every 8 to 12 weeks since diagnosis.

MissSusan profile image
MissSusan in reply to Emyloulou

Blimey, mine was April 2018 and I went from 25 to 50mcg relatively quickly but stayed on 50mcg until I requested an increase.

Emyloulou profile image
Emyloulou in reply to MissSusan

By comparison to a lot of people I have ended up on a large dose. I take 125mg of levo and 50mcg of Liothyronine. Luckily my gp and endo test ft3 and ft4 and don’t mind my tsh being below range and long as the others are in range. It’s taken a long time but I finally feel good.

Ziburu profile image
Ziburu in reply to Emyloulou

Ooh that’s nice. How would you describe good? What has changed Emyloulou and are you in the UK?

Emyloulou profile image
Emyloulou in reply to Ziburu

I’m in the UK yes.

I did have another major blip last year just after I started on t3 when I was very ill again but that wasn’t thyroid related it was eventually found to be adrenal insufficiency and I now take steroids as well.

I feel relatively normal, can work full time and do everything I want to without the overwhelming tiredness and brain fog I had. I’ve even managed to lose another 3 stone following SlimmingWorld, that’s despite taking steroids.

Ziburu profile image
Ziburu in reply to Emyloulou

Wow, that sounds really good. Am pleased for you.

How, did the adrenal prob present? My endo tested my adrenals but they were ok. I’m 5’ 6” and 9 stone. Before I got married at 32 I was 8 1/2 stone.

The major prob for me was 18 or so months ago when I think I went hyper and couldn’t sleep or relax. I had an awful feeling of dread as was on the point of just walking into casualty. I did counselling, found an endo I was happy with and finally dumped T4.

Emyloulou profile image
Emyloulou in reply to Ziburu

It’s definitely the t3 that has made the difference thyroid wise but also exacerbated the AI. I started with occasional hypoglycaemia first but when I went onto t3 I became very ill with constant nausea, occasionally vomiting, tremors, no energy at all to the extent I had to lie down after having a shower, low bp and zero appetite. I actually lost over 6 stone in the time it took them to work it out as my initial testing came back ok(just!). Thankfully I needed to as I’d put so much weight on in the time my previous Gp was telling me my thyroid was ok when in fact I had a tsh of 7.8 5 years before I was finally diagnosed.

Both me and my now fantastic new Gp think it was all those years of my body trying to compensate buy pumping out adrenaline that have caused my AI issues.

MissSusan profile image
MissSusan in reply to Emyloulou

I desperately need to lose weight. I successfully lost 5 stone a few years ago and have gained 20lbs since my diagnosis despite my eating habits remaining the same. I doubt I’ll be able to lose the weight until my dosage is correct. I feel like I’m drowning to be honest.

Emyloulou profile image
Emyloulou in reply to MissSusan

It wasn’t until my levels were spot on that I could intentionally lose weight. I did lose a lot when I was ill with the adrenal insufficiency but once that was treated it was hard work.

It’s taken me a lot longer than someone without a thyroid problem but it is going.

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