Test result advice please: Please could I have... - Thyroid UK

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Test result advice please

Crinkle1 profile image
21 Replies

Please could I have some advice on my latest test results, I have had a T. T 7 years ago, and I have Graves. I am currently taking 125 T4 and 50 T3. My latest results are T4 (12-22) 13.7. T3 (3.1-6.8) . 5.5 and TSH (0.27 - 4.2) . 0.01.

My Dr wants to reduce my T4 down to 100mg is this right?

Thanks in advance for your help

Chrissie

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SeasideSusie profile image
SeasideSusieRemembering

Crinkle1

FT4: 13.7 (12-22)

My Dr wants to reduce my T4 down to 100mg is this right?

Ask him why when your FT4 is close to the bottom of the range. His answer will be because your TSH is suppressed. Then tell him your TSH is suppressed because you take T3 and that's just what it does. Tell him that if your reduce your T4 dose it will reduce your FT4 level and will very likely go below range and are likely to feel unwell.

How do you feel on your current dose? If you feel good, no symptoms, then refuse to reduce.

Crinkle1 profile image
Crinkle1 in reply to SeasideSusie

Thank you for your very quick response 😊. I went to the Dr because I think I might be going through the change, (53 soon) I think they have mistaken my hot flushes and lack of periods for an overactive thyroid. I have called them and I have a telephone appointment on Tuesday with a locum Dr. Should my T4 levels be higher?

Thanks again x

SeasideSusie profile image
SeasideSusieRemembering in reply to Crinkle1

Crinkle1

I think they have mistaken my hot flushes and lack of periods for an overactive thyroid

Well given your age and your symptoms that's rather shortsighted of them. I would have thought that the first thing that comes to mind in these circumstances is menopause, but hey, what do I know, I'm only female, had a menopause, got thyroid disease and seen plenty of clueless doctors 🙄

Should my T4 levels be higher?

Unfortunately, when on combination hormone replacement - Levo plus T3 - nobody can tell you that, only you know where you feel best.

Some of us on Levo plus T3 need both FT4 and FT3 in the upper part of their ranges, some are fine with a lower FT4 as long as FT3 is in the upper part of it's range. So it's not possible to answer your question. Your current FT4 is low, if you feel fine with it there than that's OK, but if you reduce your Levo dose your FT4 level will go lower and possibly below range, in which case you may well develop symptoms.

Crinkle1 profile image
Crinkle1 in reply to SeasideSusie

You have made me laugh, I love your answer 😂. I do still have symptoms of an underactive thyroid extremely dry skin, loss of hair, very cold (apart from the hot flushes) very tired, cannot loose weight. Maybe I can convince him to put my thyroxine up to 150,Thanks again

Have a great weekend xx

pennyannie profile image
pennyannie

Hello Crinkle ;

Is your doctor with these results and aware you are taking T3 - or is he working from NHS thyroid bloods and likely working from just a TSH result :

Taking any form of T3 will lower / suppress a TSH and having Graves, there's the added issue of Graves antibodies still keeping your TSH in a falsely low position, which is anyway irrelevant after RAI thyroid ablation or a thyroidectomy as there is no thyroid gland to over produce anything.

If you feel well where you are there's little point in changing anything just to fit a NHS tick box exercise.

The TSH was originally introduce as a diagnostic tool to help identify a case of hypothyroidism and it was never intended to be used on patients taking any form of thyroid hormone replacement, as then T3 and T4 blood tests must be taken with the intention to keep a T3/T4 ratio of around 1/4 T3/T4 :

Crinkle1 profile image
Crinkle1 in reply to pennyannie

Hi Penny Annie,Yes they know I take t3, within a month of having my TT, they put me on t3, as they said my levels were dangerously low. They prescribed me T3 for 3 years then said I couldn't have it anymore because of the cost, that's fine I just buy my own, because it actually costs pennies. The blood results were all done at my Drs. I only went to find out if I was in menopause, thank you for all that information,

Have a great weekend x

pennyannie profile image
pennyannie in reply to Crinkle1

I find that totally ridiculous and you shouldn't be sourcing your own T3 :

Your endocrinologist saw that there was a clinical need and prescribed on the NHS what s/he believed the appropriate medicine for you after a TT for Graves Disease.

It may " just cost you pennies " but it wasn't pennies when I had to self source T3 and this just makes a mockery of the whole NHS system :

T3 is being taken away from forum members because of the cost - other forum members are refused T3 though there is a clear medical need whilst other patients are able to pay " just pennies " and reinstate their prescription for themselves.

I now self medicate with Natural Desiccated Thyroid as I feel less turbo charged than when I tried adding T3 to my T4 - I'm with Graves and after RAI thyroid ablation in 2005 I now manage lingering Graves, thyroid eye disease caused by the RAI, and hypothyroidism.

P.S. I think maybe you could teach the NHS to trick or two on procurement of T3 - Liothyronine as currently their " pennies " don't seem to be enough ????

Maybe you should become our procurement officer !!!

Crinkle1 profile image
Crinkle1 in reply to pennyannie

I buy mine from Cyprus I buy 800 tablets at a cost of £20.00 if I can do it I cannot understand why the NHS can't. I had a endo tell me that he had to stop my tablets because of the cost, I told him that they should not cost that much as they were cheap everywhere else except the UK, he just laughed and said you have no idea how expensive it is to make a tablet🤔

pennyannie profile image
pennyannie in reply to Crinkle1

I admire your tenacity and hope you didn't loose any money when looking for and sourcing a reliable supplier and you may well get asked to privately share your supplier details if any other forum members are following this post.

Crinkle1 profile image
Crinkle1 in reply to pennyannie

I don't use a supplier, I just go to Cyprus once a year for a week, go to any pharmacy and pick my tablets up. And the rest of the time catch up on some well needed vitamin D

pennyannie profile image
pennyannie in reply to Crinkle1

You are lucky you are well enough and able to travel :

Mamapea1 profile image
Mamapea1 in reply to Crinkle1

Good for you! A win win situation ☀️ We are literally living in the dark ages in this country with our health system regarding thyroid conditions...mostly due to pharma companies' price 'controls', and poorly educated Dr's. Good luck with getting through the menopause...another area they understand little about! I'm sure you'll be fine as you seem well aware of the pitfalls. It's always risky having an appointment about something else, as a lowered TSH will always be blamed...yawn!

BrynGlas profile image
BrynGlas in reply to Mamapea1

My diagnosis of hypothyroid did coincide with Menopause. And that - I think - delayed my diagnosis of hypothyroid.

BrynGlas profile image
BrynGlas in reply to Crinkle1

I buy mine online and it arrives to my door, when I am home in North Wales and/or if I am in Stoke with my family. Pay through my bank direct too.

BrynGlas profile image
BrynGlas in reply to pennyannie

I had to source and fund my own T3 as well. After being diagnosed in 1999 and having never felt well since I started on Levo - and I never was offered the chance to see an Endo either.

A new GP took over the practice, I was on 200mcg of Levo then and suddenly I began to be told by this new GP to reduce Levo. He got me down to 150 mcg then in 2019 I thought enough was enough.

I learned about my own treatment through TUK this Forum and soon realised that my GP thought my raised TSH levels were caused by his reduction of Levo and not to over medication.

I decided last year to try T3 and haven't looked back. My GP told me that he would not discuss that illegal drug with me would you believe???? Before I started T3 I asked for full blood tests and my GP rang me again saying that I was over medicated and needed to reduce my Levo again to 100mcg and I totally refused. I told him why I was not going to reduce it too. My FT4 was very low and TSH was high. I had to explain to him what that meant.

I am now on T3 only and feel so much better. Neither the NHS or most of it's GP's seem to understand the function of the thyroid. They only take note of TSH, which makes Hypo patient's treatment depend on the Pituitary alone. GP's don't get that at all.

My T3 cost me about £10.50 a box of 100 x 25mcg tablets, delivered to my doornand it has not risen since then to date.

That was before the reduction in price of T3 to the NHS as well, they were paying about £300 a pack. I would think that would have been for only a month's supply to patients too.

The NHS seemed to be tied into some sort of a contract to the Pharmas, which allowed prices to rise to sky high levels and the NHS seemed to have no way of buying T3 at the prices that mere mortals can find it at.

I can only thank God that I found my own supply, after over 20 years of Levo only treatment and GP's who have not been trained to treat hypothyroid properly, I owed it to myself to treat myself for as long as I could.

SlowDragon profile image
SlowDragonAdministrator

How do you normally take your T3

As single dose, or split as 2 or 3 smaller doses

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 and last dose levothyroxine 24 hours before test

On T3 - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test

Is this how you did your test

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

On levothyroxine and/or T3 we must have OPTIMAL vitamin levels

As you have Graves’ disease, have you had coeliac blood test done

Are you on strictly gluten free diet

If not already Gluten free, get coeliac blood test done BEFORE considering trial on strictly gluten free (something to try in New Year)

Crinkle1 profile image
Crinkle1 in reply to SlowDragon

Hi SlowDragon,Yes I do normally split my T3 but because I new I had the blood test in the morning I took them both together at 4 am as that's when I'm up for work so it was more than 24 hours. I have no supplements my last b12 test back in July was 400 so they said that's normal. And they never test for anything else. I am a life long vegetarian my b12 was as low as 176, and the same endo told me to eat more spinach 😂 luckily my gp gave me b12 injections for about 3 years, but I haven't had one now since covid

Thanks for your help 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Crinkle1

As a vegetarian it’s down to you to self supplement to maintain optimal B12 and iron and ferritin

Most Vegetarians need to self supplement B12 continuously

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

When supplementing B12 or on B12 injections

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

essential to test vitamin D and ferritin at least annually

As vegetarian Recommend getting full iron panel test for anaemia

medichecks.com/products/iro...

SlowDragon profile image
SlowDragonAdministrator

T4 (12-22) 13.7.

T3 (3.1-6.8) . 5.5

TSH (0.27 - 4.2) . 0.01

I took them both together at 4 am as that's when I'm up for work so it was more than 24 hours

So Ft3 is falsely low…..quite likely Ft3 would be over range if tested after 8-12 hours

Last 1/3rd of daily dose T3 should be 8-12 hours before test

You might actually be taking too much T3 and not enough levothyroxine

Many people find they need both Ft4 and Ft3 roughly 50-70% through range

Suggest you consider small 5mcg dose reduction in T3 and perhaps 12.5mcg increase in levothyroxine

Crinkle1 profile image
Crinkle1 in reply to SlowDragon

Thanks for all this information, it really is very helpful and making it easier to understand

SlowDragon profile image
SlowDragonAdministrator in reply to Crinkle1

Essential to test vitamin levels regularly and maintain at optimal levels

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