Stand your ground on thyroxine : Just been to my... - Thyroid UK

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Stand your ground on thyroxine

Simplyred57
Simplyred57

Just been to my GP this morning ready for a battle ; last 2 blood tests showed my TSH suppressed ( so overmedicated ) my T3 & T4 within range T4 -78% through the range & T3 - 33% ( gained this information from you lovely people on here.) He again said we should reduce dose, but I was having not of it - told him I was comfortabley in the range and was feeling well , so NO I’m not reducing- tumbleweed moment - then he said ok I can stay on the higher dose with blood tests every 6 months ( but just TSH ???? ) one question if I buy T3 Will it affect my TSH level when I get retested?

29 Replies

Taking ( not 'buying'...sorry couldn't resist) T3 will affect your thyroid blood results, obviously depends on how much, and what you do with levothyroxin( same dose or reduced)...but it is likely TSH will go down further. I went DIY with T3 with levothyroxin, this spring, and realise I will probably have to admit it to my Gp with my annual diabetic review , when TSH is also done....but then I do feel better than I was with hypo and fibromyalgia - I was hardly walking!

What level, exactly, is your TSH? You just say 'suppressed', but that could be anything from 0.1 to zero. If it's near zero, then it can't go much lower, can it. :)

TSH was 0.21mu/L in July then the latest 0.19mu/L (range 0.35-5.5) free T4 - gone up from 20(range 9-23) in July to 21(same range ) T3 done in July was 4.5pmol/L ( range 3.5-6.5 )

OK, so you do have a conversion problem. But, taking T3 will bring your TSH down a lot lower. So, although the T3 is necessary, it will involve a lot more hassle from your GP!

So now I really don’t know what to do ? I got the impression he would support me on this one staying on a higher dose ( 100mcg ) but not sure what would happen if I took T3 ?

Well, you have to make up your mind which is most important - pacifying your doctor or getting well. It's all very well for you doctor to object to a low TSH - which is totally illogical, anyway - but he doesn't have to live with the consequences. Do you know his opinions on T3? A lot of them are anti-T3 - out of ignorance, of course. But, only you can decide what to do next. I know what I'd do - what I did - just told the doctor that I needed T3 and I was going to take it, at a dose that suited me, and to hell with the TSH. He didn't know what T3 was, anyway!

When I mentioned self medicating, he certainly new about it, and said he wouldn’t recommend it, as you don’t know what you will be taking? I was so happy this morning because he agreed , and now I’m in turmoil again. He insisted as I was on a higher dose than he wanted me to be on, he wants to monitor me every 6 months instead of 12. More serious thinking or me , I do feel ok on this dose, but how much better would I feel????? That’s the question.

Well, you won't know until you try.

When you 'mentioned' self-medicating, did you mention T3?

But, quite normal that he wasn't happy about it, because he loses power. Although he's quite wrong that 'you won't know what you're taking'. That is a rediculous argument! I'm sure you wouldn't buy from just any old site - and certainly not from a body-building site - but a site recommended by others that also use the T3 from there. Trouble is, doctors take us all for idiots!

The dose you should be taking is not the dose he wants you to take, he is not inside your body, it is the dose you feel well on. And, it's about time he learnt the difference. He should not be dosing by the TSH, and that's all there is to it. Even the man that invented the TSH test said it was just a diagnostic tool and should not be used on its own, and should not be used for dosing. So, does your doctor think he knows better than the inventer of the test?

Yes I did mention T3 and he knew about ordering it from abroad.

OK, so he's been warned. But, I very much doubt he understands the effect T3 has on TSH. When taking T3, you can expect a suppressed TSH and low FT4. So, looks like it's just down to a battle of wills, then.

Sharcott
Sharcott in reply to greygoose

Thought it was free T 4 that affected TSH?

greygoose
greygoose in reply to Sharcott

It's both, but especially T3.

Sharcott
Sharcott in reply to greygoose

But my T3 is just in range but Free T4 high and TSH zero

greygoose
greygoose in reply to Sharcott

Well, obviously if you have a very high FT4, your TSH is going to be low. But there is no direct correlation between Free levels and TSH levels. You cannot say 'if FT4 is at level x, TSH will be at level y'. It doesn't work like that.

You obviously have a conversion problem, too. So, you would need to reduce your levo, and add in T3. But, your TSH will more than likely still be suppressed.

Sharcott
Sharcott in reply to greygoose

Just got this of thyroid UK not sure I fully understand it

TSH measurement, meaning that a small increase in the free thyroxine (FT4) level is accompanied by a much larger decrease in the TSH level and vice versa. However, recent research1 has shown that the relationship between the TSH and FT4 levels is not fixed as previously supposed and can at any time change permanently due to such things as illness or stress. It is also affected by body weight and whether or not you are having levothyroxine therapy.

The TSH measurement doesn’t actually tell you very much - it won't tell you if:

you are converting enough T4 into T3

you are converting too much T4 into reverse T3

your thyroid is being attacked by antibodies

you have T3 receptor resistance

greygoose
greygoose in reply to Sharcott

That's pretty much what I just said. The relationship between FT4 and TSH is not fixed, and the same goes for FT3. Nor is the relationship between FT4 and FT3.

For a start, the TSH changes throughout the day - highest very early in the morning, dropping throughout the day, and then rising again in the night.

FT3 also changes, only not as much as the TSH. It's highest point is about 2 hours after the highest point of the TSH. So, you can see that there is very little correlation. The FT4 is more or less static throughout the day. So, you cannot guess in advance by how much a certain quantity of levo is going to reduce the TSH - and sometimes it might even go up.

Well done and congratulations Simplyred57!

Yes, T3 suppresses TSH but greygoose has an excellent point!

It’s squandering of NHS resources these TSH tests - I’ve been having them for 20 years (all the same, suppressed). You should have fT3 and fT4 tests if you’re taking T3.

Think GP will have a responsibility to check fT3 if you’re taking T3. But others will be able to advise on this.

Hoxo
Hoxo in reply to Aurealis

That’s exactly what I thought as well about wasting resources. Loads and loads of TSH results - all come back as suppressed - such a waste of time!

Hidden
Hidden in reply to Hoxo

If TSH (Thyroid stimulating Hormone) is suppressed it simply means the thyroid doesn't need stimulating because you are on the right dose of thyroid hormones!

As long as we feel OK and don't start getting hyperthyroid symptoms, what's the problem? Why can't the GP be happy if the patient is happy and feels well???

SlowDragon
SlowDragonAdministrator

Couldn't see any recent test results for folate or B12 in previous posts

These need testing and often require supplementing to bring to optimal

Vitamin D, could be higher at around 100nmol

What's current ferritin levels?

Getting vitamins optimal first.

If FT3 remains low, suggest you get DIO2 gene test

As soon as you add any T3 then TSH likely to drop and GP then wants to reduce Levo

Ferritin 160.0 ug/L ( range 30.0- 400.0 ) Not sure if B12 or folate was done (full blood count done ) in July. What is the best vitamin D to take please.

SlowDragon
SlowDragonAdministrator in reply to Simplyred57

Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 1000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Get GP to test folate and B12. Both are often too low when hypothyroid and under medicated

SlowDragon
SlowDragonAdministrator

As you have had RAI in past you are likely to need addition of T3 or suppressed TSH and high, above range FT4 in order to have high enough FT3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

I printed both articles and left a copy marked private addressed to him and asked the receptionist to give him them so he could read it before my appointment today, guess what he didn’t t get it and I have to say he was furious ( think someone is in big trouble ) so I gave him my copies I had taken with me , so he has the information. I highlighted everything in the article that was relevant to me. Think I will have b12 and folate done privately.

SlowDragon
SlowDragonAdministrator in reply to Simplyred57

At least he was keen to read .....and learn....hopefully

Hi slowdragon thank you so much for all that information, is it better to have the vit D spray with the vit k 2 included ? I already take a magnesium supplement.

SlowDragon
SlowDragonAdministrator in reply to Simplyred57

I don't as I need high dose vitamin D (4000-6000iu daily)

I prefer to take K2 Mk7 separately - brand Healthy origins

Hey there Simplyred 57

From one Graves Disease patient to another, I've been where you are and am currently self medicating trying NDT. and feeling like I'm getting back on track.

Graves is for life, the thyroid being the victim not the cause. It's an autoimmune disease.

Having had RAI 1-131 treatment will skewer all the blood tests and your body.

We have TSI antibodies controlling our TSH and so will appear overstimulated on a much lower dose of Levothyroxine than other hypothyroid patients.

We now have to try and manage both Graves, hypothyroidism and if you were unlucky, thyroid eye disease.

There does not appear to be any special guidance as to our management.

It is imperative that your blood test monitoring includes T3 and T4. and the relevant vitamins and minerals as detailed on this site.

I paid for my own T3 and T4 through the doctor and she refused to increase my Levothyroxine until my tests were back, as she wanted to see where I was -

ironic really, as she'd told me the tests weren't necessary. And so it goes on !!!!

This site was, and is, my learning curve and, wow, I've gone round and around the NHS with no help, support or acknowledgement of my health issues.

At the risk of asking you to suck eggs :-

Elaine Moore - Graves Disease A Practical Guide Book plus website :

Dr Durrant- Peatfield's Book - Your Thyroid and how to keep it healthy :

Barbara Lougheed's Tired Thyroid - from hyper to hypo to healing - breaking the TSH rule :

I see you went armed with Prof Toft's counterblast - I tried that with both my doctor and the one and only endo I have ever seen in the past 12 years.

I listened to the dogma that with a suppressed TSH I'm overmedicated, despite a T3 reading of 4.5 and a T4 of 22.

Graves is stress and anxiety related, I'm at a impasse with all people medical, and feeling a lot better.

There's a lot to take in, and if suffering with the " brain fog " read and read again, it will come right, and you'll be stronger for it,

Take good care

Thank you pennyannie I think I need to do some reading on graves, so will take a look at the recommended literature- graves should be definitely treated by experts , will read up and go back to my GP and look into NDT .

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