What more can I do : Hello! I’d love some insight... - Thyroid UK

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What more can I do

Naturemama profile image
16 Replies

Hello! I’d love some insight into t3/trying to conceive and uncontrollable weight gain..

Im currently on 100 of Levo, seems my numbers are in range/ “optimum” and I am feeling a lot better with fewer symptoms. All great so far it’s seems!!...

BUT.... My weight is increasing something ridiculous (ONLY since being on Levo) , I am active, eat well, I am gluten free (due to hashimoto antibodies)

What have people’s experiences been? Im toying with a trial of T3?? (I understand I would need to source this myself)

We are trying to conceive our second baby and would love to be in optimum health, including being a “healthy weight”

Love some support I’m really down about this now

Thank you...

Here are my most recent lab tests

TSH 0.34(0.27-4.2)

FT4 16.5 (12-22)

FT3 5.4 (3.1-6.8)

All other vitamin etc numbers are good!

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Naturemama profile image
Naturemama
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SeasideSusie profile image
SeasideSusieRemembering

Naturemama

You don't need T3, your T4:T3 conversion is absolutely fine. Your FT4 is 45% through range, your FT3 is 62% through range, excellent conversion.

Your problem is that you are undermedicated with your Levo to have such a low FT4. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

Dr Toft, leading endocrinologist and past president of the British Thyroid Association, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org print it and highlight question 6 to show your doctor to support your request for an increase in dose.

Are all your vitamins at optimal levels:

Vit D - 125nmol/L (recommended by the Vit D Council) or 100-150nmol/L (recommended by the Vit D Society)

B12 - top of range for serum B12 with a minimum of 550pg/ml, or well of 70 for Active B12

Folate - at least half way through range

Ferritin - half way through range with a minimum of 70 for thyroid hormone to work properly

Naturemama profile image
Naturemama in reply toSeasideSusie

Thanks for your input, okay I’ll have to revisit the dreadful Gp!! I battled hard to get my Levo upped!

So In short my t4 needs to be even higher than 16?

Sorry I don’t really fully understand from my bloods about coming to a conclusion that t3 wouldn’t be beneficial, still relatively new to all this!

Rest of my bloods good but will take your info and just double check those.

Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply toNaturemama

Sorry I don’t really fully understand from my bloods about coming to a conclusion that t3 wouldn’t be beneficial, still relatively new to all this!

T4 is a pro-hormone, a storage hormone. Some T4 is converted to T3. T3 is the active hormone which every cell in our bodies need. If we didn't produce any T3 we would be very symptomatic indeed, it's low T3 that causes symptoms.

Free T4 and Free T3 measures the amount of hormone available to be taken up by the cells.

If Free T3 is low and Free T4 is high, that would mean conversion is poor and the addition of T3 to Levo would be beneficial.

Your Free T4 is fairly low in range, your Free T3 is a fair bit higher than your Free T4, so your body is converting T4 into T3 very well indeed. If you added T3 to your Levo you would take your Free T3 level over range and you would most likely get symptoms of overmedication (similar to symptoms of hyperthyroidism).

The key is to get the right balance of FT4 and FT3 for us individually. Some people may be fine with your levels. You still have a problem with weight. That is often due to undermedication. If you increase your Levo that will raise your FT4 and will also raise your FT3 (because you have good conversion).

Some people are under the mistaken impression that T3 is a weight loss drug. It's not.

If your GP is reluctant to increase your dose because of your TSH result (increasing Levo will reduce TSH so it will go under range) then use the Dr Toft article to reassure him that the UK's leading endocrinologist suggests this is fine.

Naturemama profile image
Naturemama in reply toSeasideSusie

Fab, thank you so much, this makes things much clearer in my head.

I think as we are trying for a Baby I want to ensure all is as good as it can be and with a few lingering symptoms (weight being thebhardest to “battle”, but a few other niggles!) I just couldn’t understand why this may be as my “fresh eye” so to speak thought these results were good!

Thank you again I am much better informed now x

Naturemama profile image
Naturemama in reply toSeasideSusie

Sorry can I also ask.. RT3 - is this potentially causing issues ?

SeasideSusie profile image
SeasideSusieRemembering in reply toNaturemama

Have you had rT3 tested?

Naturemama profile image
Naturemama in reply toSeasideSusie

They will not test it, no.

Naturemama profile image
Naturemama in reply toNaturemama

I had to battle for ft3

SeasideSusie profile image
SeasideSusieRemembering in reply toNaturemama

I'm surprised you asked about rT3 if you haven't had it tested.

Don't worry about it. You have a good level of FT3 so you're not making rT3 rather than FT3. FT4 would have to be very high and FT3 low to suggest the possibility of rT3

And rT3 can be made in times of severe illness or strict low calorie dieting as a mechanism of preserving energy. So even if someone tests and has a high rT3 result, the test doesn't tell them what's caused it.

Article worth reading verywellhealth.com/reverse-...

Naturemama profile image
Naturemama in reply toSeasideSusie

Why are you surprised by this?

I ask as rt3 / lack of knowledge / testing of rt3 and the t3 added is Discussed relatively widely as benefit to many thyroid patients and to only treat on the numbers alone is often not good enough (as I have indeed already experienced)... I will read up further on this to better understand before making any decisions.

SeasideSusie profile image
SeasideSusieRemembering in reply toNaturemama

Why are you surprised by this?

You asked "can I also ask.. RT3 - is this potentially causing issues ?", which to me made me think you knew you had a rT3 problem because you had tested and that's what prompted your question, and I was surprised when you said you hadn't had rT3 tested.

rT3 is a bit of a red herring. It can be caused by by a build up of unconverted T4 and make rT3 rather than FT3 but there are many other reasons that cause rT3. So even though we can test for rT3, if it comes back high the test doesn't tell us why it's high. My own experience bears this out.

When I first did a whole barrage of tests, I had very over range FT4 and mid-range FT3 in blood tests, suggesting poor conversion. My rT3 was at the very top of the range (but not over). A urine thyroid test confirmed poor conversion. I added T3 to a lower dose of Levo, my FT4 reduced, my FT3 improved. A few months later, I retested rT3. My FT4 was low at 35% through range, my FT3 was 75% through range and my rT3 was way over range this time, it had increased considerably. Obviously I couldn't equate the high rT3 to a build up of unconverted T4 this time as my FT3 was so good, and my FT4 very low in range, so obviously there was something else causing the rT3 but the test couldn't tell me what it was. All my nutrients were either optimal or close to optimal so it wasn't that, but it could very well have been my adrenals as those have been, and continue to be, a problem.

Naturemama profile image
Naturemama in reply toSeasideSusie

Thank you for your insight

danym profile image
danym in reply toSeasideSusie

has you rt3 decreased since, what did you do to decrease it?

SeasideSusie profile image
SeasideSusieRemembering in reply todanym

I have no idea if it's decreased. I'm not wasting any more money on a test that can't tell me why the result is what it is. As I said, the reason for the very high rT3 in my second test certainly wasn't excess T4 not converting.

Things that can cause high reverse t3 include selenium or zinc deficiency, cortisol issues, stress, dieting, low iron, chronic inflammation, liver issues, physical injury, Illnesses like the flu, poorly treated diabetes, Lyme disease, fever, chronic fatigue and any other chronic health issues.

I know what I can say definitely didn't cause my rT3, there are some things in that list that are a possibility.

But my thyroid hormones are now balanced and that isn't causing rT3. If I still have it due to one of the other reasons then it will be tempoary and will sort it self out.

Legoparis profile image
Legoparis

I appreciate you and Susie have been exchanging lots of brilliant thoughts on subject

But in meantime ( as someone with similar experiences) look at sleep and cortisol

I was getting so stressed about weight gain and other family issues I couldn’t sleep well and had ( I later discovered high cortisol levels)

By just accepting where I was and decided on not stressing about weight and started some gentle yoga ( boring I know) I have to say I feel more in control and without trying I’ve lost weight?

So just realise that the baby will come when your body is ready ( my second child was conceived when undiagnosed overactive thyroid ) at 29 she is struggling with health issues and could be connected so Better I think to focus on accepting yourself as you are now -your subconscious is amazing tool and can make or break your life

I wish you every luck in your journey

Naturemama profile image
Naturemama in reply toLegoparis

Thank you,

We haven’t particularly been stressing about the situation but I am aware my health is certainly not at its optimum.

Sleep isn’t an issue, will arrange to see GP to discuss cortisol.

I think my wonder for t3 is because rt3 issue can be due to chronic inflammation (exactly what is found in autoimmune conditions, my anti bodies are very high- this inflammation is inevitable)

Thanks

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