Thyroid UK
87,554 members102,268 posts

Problem with levo

If I take my Levo 2 hours away from food and drink and take it with water and leave 8 hours to take medications and other supplements then why are my levels so poor on 200mcg please? Thank you

TSH 5.9 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.2 (3.1 - 6.8)

Diagnosed 2011 with under active

Symptoms

Nausea

Stomach pain

Muscle cramps

Thyroid feeling "fizzy"

Aches in bones

Headaches

Tiredness

Tinnitus

Dizziness

Weight gain

Heavy periods

44 Replies
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First thought (late at night). I suggest that you are a poor converter. Your free T3 is very low and that's the active hormone which powers your body. T4 from levo (or otherwise) is not an active hormone but must be converted to T3 to be of any use.

You still seem to be undermedicated. You may need T3 or NDT.

What are the other medications that you take? Some other medications don't go with levo.

Further info will help us to help you.

All the best.

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No other medications but if I did take any I would keep them 8 hours apart

Thanks

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I don't think conversion is your problem, because your FT4 is also low. I think you probably have low stomach acid.

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Conversion was poor when I was taking higher doses and T3 sorted it

Thanks

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Well, yes, it would be. Because the higher your FT4, the more that is converted into rT3 and less to T3.

But that does not distract from the fact that you are not absorbing much of your levo. To have a TSH of 5.9, and an FT4 of 14.6, on 200 mcg levo, means that not much of it is getting into the blood. Therefore, you have low stomach acid, leaky gut, or some other form of gut problem that makes breaking down of the tablet, and absorption of the hormone, difficult.

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High cortisol and low iron interfere with levo or any hormone. Also you need high levels of D for the other hormones to work because it is a pre hormone. Your TSH is much too high. If you can get some testing to figure out what is standing in the way you can make the changes. Otherwise you could try adding T3 to your levo which will raise your dose.

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Or NDT as Anthea commented above. NDT has higher t3 than human thyroid and in stable form.

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Endo has refused to prescribe NDT

Thanks

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Well, if you get desperate, you can buy it without a script from some sources, e.g. in Thailand

24. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.

Full Guidelines can be found here:

healthunlocked.com/thyroidu...

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I have vit D deficiency and iron deficiency and folate deficiency and B12 deficiency. T3 was removed in 2016.

Thanks

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These deficiencies will hinder conversion. Are they being sorted out? It's really important that they are well up in the range. It takes time for supplements to work. Your endo should have addressed that.

T3 was being removed mainly due to cost, but the recent campaign by Thyroid UK has made them change their minds.

I can't find the link, but if you go to the Thyroid UK home page at thyroiduk.org/index.html

and look at Recent News, there's an entry for 30/11/2017 for 'NHS England decision on deprescribing of liothyronine'.

Quote from that link referring to T3 ....

"Now is the time for patients who have been de-prescribed to go back to their GP/Endocrinologist and show them the NHS England decision and push for having it represcribed again."

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Thanks no they are not being sorted

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See detailed advice in my post below from SeasideSusie on how to improve vitamins

They are essential to get sorted

Your current endo is probably a Diabetes specialist, certainly knows absolutely nothing about Hashimoto's if they think TSH of 5 is fine

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:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

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

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I don't have hashimotos thanks

TPO antibody 3000 (<34)

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jnpa Doesn't high antibodies mean you have hashimoto's?

If so, addressing nutrient deficiencies, improving gut health, & going gluten free may help you feel better.

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I was told by GP my antibodies need to be in range to be positive. So they are not?

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I don't have hashimoto's & only know enough from skimming posts on here, but if your's are 3,000 & less than (<) 34 is the normal range, I'm wondering if your endocrinologists got their qualifications from a lucky bag.

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Your GP is 100% wrong. It is over-range antibodies that mean you have Hashi's. Honestly! What do they learn in med school these days!

So, yes, you do have Hashi's, I'm afraid.

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These vitamin deficiencies are direct result of having T3 stopped

Thyroid hormones can not work properly if vitamin levels are too low

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Here's some previous similar posts

T3 removed, advice on how to get back

healthunlocked.com/thyroidu...

Why T3 should not be stopped

healthunlocked.com/thyroidu...

Typical posts after T3 stopped showing dire vitamin results

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Essential to get vitamin levels up first

But you are going to need your T3 back

Would strongly recommend getting. DIO2 gene test done as means of arguing your case (assuming you test positive)

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

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

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org.uk/tuk/get_in...

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These all sound like big reasons you may have problems! You need good levels of all these vitamins.

Have you had better looking thyroid blood tests in the past?

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How long after taking levo should I leave before eating /drinking?

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AnnieGam leave at least an hour before or two hours after food, & at least 4 hours between thyroid hormones & any supplements or medication. Avoid anything other thn water for at least an hour, too. It's also good to take with water containing a little citric acid or aple cider vinegar to enhance digestion & absorption. I've been adding a slice of lemon to my glass of water at bedtime. :)

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Thank you👍🏻

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because you are not converting from T4 to T3 in your body, you need a referral, your TSH is too high, please ask for one

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Endo says my TSH is fine.

Thanks

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jnpa your endo doesn’t have to live with it. The TSH is NOT fine it is indicative of undermedication and that is making you ill

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Looks like it could be worth trying to swap 50 mcg levo for half to one grain of desiccated thyroid or 5-8 mcg synthetic T3......? 2 hours after or before food and drink? 2 hours after may not be enough time for empty stomach and small intestine...... Also.... suggest you consider finger prick blood test at home for free T4 and T3 and TSH at midday and then as near to midnight as you can to show your circadian high and low thyroid levels (both tests at least 6 hours away from thyroid medications.....

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What's this finger-prick test for free T4, T3 and TSH? Sounds amazing. I would like to know more.

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Medichecks.com :)

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This test should be done early morning on an empty stomach leave Levo off for 24 hours prior to test.

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Thanks for all this info, bunnyjean. :-)

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Several things need addressing. Let is look at any readings you have for Vit D, B12, folate and ferritin and if you are supplementing let us know how. These 4 are very important to help our thyroid, the things that have to be at high enough levels to help withvconversion. They will also help generally and with some of the symptoms you are having. Your dose is also too low. The aim is to get the TSH lower, most feel better around one and the FT4 and the FT3 need to be in the top third or even the top quarter of their respective ranges so you are nowhere near that. So getting the vits etc right anfcincreasing your meds will go along way to making you feel better. It may need some tweaking as you progress. I theory youmay not need to add any T3 as correcting the things already mentioned could well solve it and often throwing T3 into the mix just because your level is low won't be stable long term as you need to sort out the reasons as well.

It's not going to happen over night depending on how deficient things are. I took 5 months correcting mine but very well worth the effort.

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200mcg levothyroxine too low?

Much research and authoritative opinion frequently suggests less is more! Too much free T4 suppresses conversión to T3 by negative feedback.

Separately, Poor conversion of even the theoretically appropriate T4 dose is a real thing for some people and small additions of T3 eg vía desiccated thyroid supplements are possibly more effective than just optimizing co-factors and hypothyroid collaterals like vitamins and minerals without getting the T4 T3 dose right. Except for the possible exception of selenium which could be limiting conversion in cases of serious selenium deficiencies. You can test it!

Optimize everything to save guesswork.

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We have just received the results of my wife's DI02 test, and as I always suspected, she has a D2 gene variant, meaning that she does not convert T4 properly. She is currently on T4 +T3, but I know from empirical testing that she actually feels a lot better on T3 only, but the medics refuse to prescribe that way, as they are locked into the Big Pharma, Big Medico schtick of "Only T4 works, and only the tsh test works, and if you really push, we might give you some T3 as well"

I suggest that you get the DI02 test done, to confirm your gene status.

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Endo says no need because I have high TPO antibodies

Thanks

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jnpa wheres the logic in that? Your endo spouts a lot of 💩 I’m afraid and appears to be both ignorant and cruel, which makes me furious I’d like to give them a piece of my mind.. You should get your T3 and your health back. Fight for it or buy some in line.

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I agree it does help when visiting an Endo being able to prove via the DIO2 test. They might just agree to restart your T3.if you have a positive reading.

I am sure that many of my family have the gene I am getting tested when I visit the UK

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Endo says no need because I have high TPO antibodies

Thanks

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jnpa i can’t see the connexion your endo is just talking rubbish to fob you off - getting properly medicated might help to get them down!

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That is something entirely different. Go on thinking that all Doctors and Endos are there for your best interest. Good luck with that way of thinking.

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Do I have to prepare for it?

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I am now considering it. Thanks

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Blue horizon currently have £60 off the dna testing for thyroid genes until the end of January. I'm currently dithering over whether to have it done as I have never been prescribed t3 and had heard it was not possible to get it on the NHS at the moment so not sure it is worth it or not for me but it could help you.

bluehorizonmedicals.co.uk/t... enter BLUDNAJAN to get £60 off in January (so it costs £139)

Hope you feel better soon!

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Thanks I am now considering it

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