Follow up question

[Fran6500]

I posted last week and Seaside Suzy was very helpful in responding. I have been thinking about what Suzy said and not sure what to do now.

My question is - do I try and source T3 to take in conjunction with the T4 Levo prescribed? Or not??

Here are my latest results:

MOST RECENT RESULTS: 19 May 2018

T3 free 2.92 pg/ml (2.70 to 5.30)

T4 free 1.21 ng/dl (.80 to 2.20)

Reverse T3 0.15 ng/ml (0.09 to 0.35)

TSH 0.64 mUI/L (0.47 to 4.68)

D3 44 ng/ml (sufficient 31-100)

Following a recent consultation the doctor wishes me to reduce my dose of thyroxine to 75 mcg 3 days a week, and 50 mcg 4 days a week. I live in Portugal and she says she cannot prescribe T3 but if I can source it elsewhere is happy to monitor and advise me on the use of it. Do I need that? Should I reduce my dosage of T4?

Would appreciate some advice about this. Many thanks

[Aurealis]

I don’t see any reason to reduce your dose...

[Aurealis]

What is GPs reason for proposing a reduction in dose? How are you feeling?

[Fran6500 in reply to Aurealis]

I think because my TSH has lowered successfully over the past 5 months. I haven't reduced it yet. I feel a lot better than I have done for the last few years but still fatigued often, cannot find words for the end of sentences, remember names or similar and am often hoarse when I am tired. Also, weight hard to lose although I am only just overweight, not obese.

[Aurealis in reply to Fran6500]

You don’t need a reduction in dose, an increase sounds more suitable. It doesn’t sound like your doctor really knows what she’s doing. Sorry ...

[Fran6500 in reply to Aurealis]

She was a lot better than the Endo I paid 100 euro to for nothing! Probably the best I can get and overall she is great.

So, do you think T3 would be helpful or needed?

[Aurealis in reply to Fran6500]

Personally I don’t think you can tell until you’ve taken the Levo dose higher. I wouldn’t advise taking T3 unless you have to as it’s a bit tricky to get adjusted right, worth it if you have to go that way though.

[Fran6500 in reply to Aurealis]

thanks. I will give a higher dose of Levo a chance before doing anything with T3.

[Jazzw in reply to Fran6500]

If you reduce your dose, you’ll go back to feeling really rubbish again. Levothyroxine isn’t a treatment - it replaces the hormone you can no longer make. It doesn’t cure you. So that comment about “because my TSH has lowered successfully” doesn’t make any sense! If anything, because your FT4 is also quite low in range, you’d benefit from a raise in levothyroxine, which might even result in you not needing T3. If your FT4 was higher in range, your body might be able to convert more of it to T3 naturally and you’d feel better.

I’d pursue getting more levothyroxine before trying to source T3.

[Fran6500 in reply to Jazzw]

thank you for responding. I have plenty of Levo so will increase my dosage gradually and see how I feel.

[endomad in reply to Jazzw]

Totally agree its not like taking paracetamol for a headache, this is a daily requirement for good health and natural function. My thyroid was removed and my dr thought if removed my body didnt need it (yes really) and friends who say, isnt that fixed, sorted, done etc etc no it is a daily thing. I am on t3 only and its no picnic when everything not balanced, i have cortisol crashes, which with low cortisol i cant handle, adrenaline rushes to compensate, im still easily fatigued so its no magic cure thats for sure.

I think your dr is bonkers reducing your dose but that seems the big experiment these days just how little can you survive on, not what actually makes us well....rant over x

[Angelic69 in reply to Jazzw]

Can it be guaranteed that it will convert to T3 and not rT3. And if so wouldn't a horse voice be a tell-tale sign that it was creating a testosterone increasing manly scenario fuelled by rT3 .

[Jazzw in reply to Angelic69]

I think that because FT4 is low in range, it’s not very likely to turn to RT3. RT3, as I understand it, is a mechanism designed to get rid of any excess T4 knocking around. There doesn’t seem to be any excess here.

And re a horse voice being connected to raised testosterone, nay. I guess it’s a possibility but an unlikely one. Hoarse voices are usually inflamed larynxs or something pressing on the larynx, like a swollen gland or a goitre.

[SlowDragon Administrator]

You more likely need a dose increase, not dose reduction. Both FT4 and FT3 are low in ranges

FT4 needs to be in top 1/3rd and FT3 at least half way in range

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

[e-mail]

Do you have Hashimoto's? Diagnosed by High thyroid antibodies

What about vitamin B12, folate and ferritin levels?

Your vitamin D is good

40 ng/ml is about 100nmol

endmemo.com/medical/unitcon...

Increasing Levo is first option.

[Fran6500 in reply to SlowDragon]

thank you for responding. All really helpful.

My antibodies are really high. More than 1300.

I have had B12 injections and got well into range but not had any for more than 2 months though still have stock of medicine. Am thinking of continuing with that once a month.

Ferritin was low but in range.

I will increase my dosage of Levo gradually and see how I feel.

thank you

[SlowDragon Administrator in reply to Fran6500]

Taking a daily good vitamin B complex, one with folate in, not folic acid. (Eg Igennus Super B complex or Jarrow B right) Plus possibly a sublingual B12 can both help

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Ferritin, eating liver or liver pate once a week can help improve

Strictly gluten free diet can give significant improvements. You don't need any gut symptoms

[Fran6500 in reply to SlowDragon]

Liver pate is a good idea. I can eat that.

Tried gluten free but fail each time we travel which is quite frequent at the moment.

Not taking any vitamin B complex but am taking selenium and magnesium.

thanks for taking the time to respond. Much appreciated

[Sylvia22 in reply to SlowDragon]

I took this booklet with me when I saw endocrinologist. He looked exasperated and then ingnored it.

[SlowDragon Administrator in reply to Sylvia22]

Which booklet?

One by Prof Toft ?

[helvella in reply to SlowDragon]

See healthunlocked.com/thyroidu...

[SlowDragon Administrator]

Ideally ask GP for coeliac blood test first or get coeliac blood test online before going strictly gluten free

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Fran6500 in reply to SlowDragon]

It was the doctor who advised me to go gluten free but she didnt suggest the coeliac blood test. I did have an operation in March 2017 and have had colonoscopies and nothing was noted about the lining of my intestines being damaged. I understand Coeliac disease damages the intestines if left untreated/gluten is not cut out?

[SlowDragon Administrator in reply to Fran6500]

Ok don't bother with coeliac test then

With Hashimoto's we more commonly have gluten intolerance, not coeliac. It's similar, but doesn't necessarily have same visible gut damage

It's does need to be absolutely, strictly gluten free. Watching out for cross contamination, chopping boards, separate toaster, don't share butter, jam, marmalade etc

It does take a while to get use to, thinking ahead, if eating out etc.

Each time you eat gluten it can take weeks or months to recover levels. See Chris Kresser link

[Angelic69 in reply to SlowDragon]

Did anyone watch that series that was on the television a while back called Victorian kitchen and bread crisis in times of war. Well they started to put cement and all kinds of stuff in with the bread to bulk it all so that it would go further. With all the cuts this country is having perhaps we are not gluten intolerant maybe we are polyfiller intolerant.

[Fruitandnutcase in reply to Fran6500]

Good that your doctor suggested it. I went totally GF a few years ago. I didn’t test for coeliac first though but it won’t make any difference. My thyroid antibodies have plummeted since I started, I was intending giving it three months to see what happened but there was such a difference I never went back to gluten/ wheat foods.

I don’t find travelling all that difficult. Most restaurants are quite clued up about gluten these days. I found snacking the most difficult to begin with - no much of that sort of thing involves gluten -so I always carried a little tub of nuts and seeds with me or I would buy a pack of cooked chicken -GF of course! - from a supermarket.

Other than that it’s good old fashioned home cooking but I thicken with cornflour or GF gravy mix sort of stuff. I joined Coeliac UK when I startedand got their very usefulhandbook of GF products and general advice. It’s worth doing that when you start. Like Slow Dragon says - you’ve got to plan ahead. I look at online menus to check that the places we want to eat have good GF choices and I make sure to have nuts or something GF in case I need to grab a snack.

[Fran6500 in reply to Fruitandnutcase]

Thanks for the ideas when travelling. I can see that I need to think laterally - you are correct, it is the snacks that seem difficult. Will try again

[SlowDragon Administrator]

There’s also a website - coeliac travel I think

You can download a card in virtually any language that explains what you can’t eat (proved very handy on holidays)

[SlowDragon Administrator]

Here is Coeliac travel cards

celiactravel.com/cards/

[Fran6500 in reply to SlowDragon]

Thanks very much. Will ave a look at the website and also those travel cards.

I know I need to make more of an effort because mainly, my digestive system is very dodgy! And when I went gluten free and dairy free in the early part of this year, I had so much more energy.

Thanks for all the help everyone.