Test results: Hi Been on levo 100mcg over a year... - Thyroid UK

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ali2341 profile image
11 Replies

Hi Been on levo 100mcg over a year, still have symptoms of tiredness , find it hard to lose weight and depression, also in the morning i feel sick when brushing teeth and need to eat something first to do so, can someone please help with these results thanks.

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ali2341
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SeasideSusie profile image
SeasideSusieRemembering

ali2341

You are currently undermedicated and need an increase in your dose of Levo, 25mcg now and retest in 6-8 weeks.

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

You should ask your GP for an increase in your dose and use the following information to support your request:

gpnotebook.com/simplepage.c...

Target level for TSH during thyroxine therapy

Fine tuning of the dose could be necessary in some patients

* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article which contains this quote from ThyroidUK

Email : tukadmin@thyroiduk.org

and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.

Your raised TPO antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's, so the cause of your hypothyroidism is autoimmune.

Fluctuations in symptoms and test results are common with Hashi's.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.

ali2341 profile image
ali2341 in reply toSeasideSusie

Thanks for the reply,i am getting vitamins and tsh tested by nhs tomorrow will add results, i still have bad symptoms im thinking that 1.6 mcg per kg is right dose for me as i weigh 120kg and only take 100 mcg ?

SeasideSusie profile image
SeasideSusieRemembering in reply toali2341

ali2341

Yes, you need an increase in dose but please don't get hung up on "I should take X amount of Levo because I weigh Y".

The dose by weight is in the new guidelines as an estimated starter dose for some people with recommendation to adjust dose where necessary. It is not set in stone that you need to dose by weight. We need what we need and it's how we feel that should be our guide.

You need to increase your Levo gradually in 25mcg increments every 6-8 weeks, maybe eventually fine tuning by a smaller increment to get your optimal dose where you feel well, as an example I feel better on 107mcg daily rather than 112.5mcg. Your eventual dose may or may not equate to the dose by weight you refer to.

ali2341 profile image
ali2341

thank you, but i am really desperate to lose weight and feel better, i do not feel good on this does and i am going to take 200mcg from now and will monitor my levels every month , if doc agrees thats fine but i am going to do it with or without his help.

Jazzw profile image
Jazzw in reply toali2341

Nooo, please don’t double your dosage—that’s not going to help you solve this. It’s more likely to give you very unpleasant symptoms of over-dosage—rapid heartbeat, feeling very unwell, loose bowels etc.

While you are definitely undermedicated, you’re not as undermedicated as all that—you may end up needing somewhere between 125 and 150mcg levothyroxine.

Your doctor is unlikely to disagree to you trying an increase in dosage—ask for 125mcg to be prescribed.

SeasideSusie profile image
SeasideSusieRemembering in reply toali2341

And you will set yourself up for problems. Increases should only be 25mcg at a time, the body needs to get used to the new dose of hormone, allowing time to settle before increasing again. This way you will find your sweet spot. Take 200mcg now and you will be doubling your dose, your body wont like it and you may very well end up overmedicated and experience symptoms of "hyperthyroidism" and, at best, overshoot your sweet spot and will have to reduce again to feel well, this will take even longer than being patient and going slowly. Please take the advice of the many experienced hypo patients here and have patience, you cannot rush it.

ali2341 profile image
ali2341 in reply toSeasideSusie

ok but i dont think 125mcg is going to bring down my tsh under 1 , but will speak to doc to increase my dosage

SeasideSusie profile image
SeasideSusieRemembering in reply toali2341

but i dont think 125mcg is going to bring down my tsh under 1

No it won't, but as has been pointed out you need to increase slowly at the correct rate. This will be the start and you retest 6-8 weeks after this increase then increase again, and repeat until you reach your optimal dose.

RoboTh profile image
RoboTh in reply toali2341

My TSH was 0.38 approximately then went to over 3. Within a few weeks of increasing from 75 to 100 mcg it is back down to 1.38. honestly it will do the job. I'd collapse if I doubled my dose. I can only just manage the 25mcg increment

Litatamon profile image
Litatamon in reply toali2341

Please don't Ali. My endocrinologist pretty well doubled my dose in one swipe - knowing it was against protocol, and it has been a hellish experience. And I am still not in normal range, even after all the suffering. Yes you might need a much higher dose but let your body get there at a proper speed. So it can adjust.

All the best to you.

JAmanda profile image
JAmanda

The real measures are t3 and to an extent t4 - I think you’ll find they’ll go up nicely if you add in an extra 25 levo (a 25% increase).

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