nervous about starting Levo: As of January this... - Thyroid UK

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nervous about starting Levo

glutendairysoya profile image
11 Replies

As of January this year

TSH ; 7.28

Free T4: 11

TPO antibodies greater than 600

My history is in 2018( 56yrs old) I had acute thyroiditis, commenced Levo for a week, intolerant, so I went to functional Dr who recommended a diet for me Gluten,Diary and soya free, I have been stable since then.

commenced HRT in 2021 due to osteopenia.

since beginning of this month my thyroid is swollen and I am lethargic.

I have been 57kg for most of my adult life and today.

I am so frightened at starting Levo again due to past experiences, I felt extremely nauseated and faint on it.

Please help me with my next move as I am frightened.

Thank you in advance

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glutendairysoya profile image
glutendairysoya
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11 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Intolerance of Levo is often caused by low vitamin levels. If you have been hypo for any length of time then vitamin levels tend to plummet due to the low stomach acid caused by being hypo.

Have you ever had your key vitamin levels tested?

For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Starting on only 25mcgs Levo can cause some people issues temporarily as it isn't enough to replace what your own thyroid is putting out. 50mcgs is a better place to start but ensuring that vitamins are more optimal in the first instance can make all the difference.

glutendairysoya profile image
glutendairysoya in reply to Jaydee1507

thanks for your response. I can't quite see the text box you are referring too. what do I add to it?

Jaydee1507 profile image
Jaydee1507Administrator in reply to glutendairysoya

You can get to your profile by clicking on your own image icon, then the text box is below the banner at the top.

glutendairysoya profile image
glutendairysoya in reply to Jaydee1507

do you mean the "about info" I need to complete. I am on an applemac

Jaydee1507 profile image
Jaydee1507Administrator in reply to glutendairysoya

While we are here have you had your vitamin levels tested or are you supplementing?

Ref profile, click on your image icon and hit 'update '. It shouldn't matter which computer system you are using. Just add some of your thyroid background info.

update profile
glutendairysoya profile image
glutendairysoya in reply to Jaydee1507

calcium 2.36 jan 2024

Vit D 102 jan 2024

ferritin 128 June 2023

folate 5.3 June 2023

vit B12 110 oct 2021

I take iron spray/ vitamin D spray + capsules.

Jaydee1507 profile image
Jaydee1507Administrator in reply to glutendairysoya

When you write results you also need to include the reference range for each test, although vit D & ferritin are fairly standard. Other tests can vary depending on the lab.

Your folate is too low, depending on the range should be around 20.

B12 result, was it an active or serum B12 test? If active then its a good result. If its a serum test its terrible and you need to take action.

tattybogle profile image
tattybogle

Hi, if you can remember what brand of levo you were given previously , it is a good idea to ask for a different brand from chemist this time .... lot's of people feel iffy with one brand yet feel ok with another.

eg . TEVA brand is noted for making some people feel unwell but are fine on anything else , while some people actively prefer Teva and find they have issues on anything else.

Some brands have Lactose in them , some are lactose free. see helvella 's chart in replies here :

healthunlocked.com/thyroidu... ...some info may be slightly out of date as it's an old post, but just to give you an idea of what is available.

Also bear in mind that when starting levo /or changing dose , you may notice all sorts of odd effects in the first few weeks .. many of which will settle down once the body has acclimatised itself to a stable dose .... so when starting it again this time , if possible try to stick it out for 6 weeks before making mind up how it feels.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

helvella profile image
helvellaAdministratorThyroid UK in reply to tattybogle

:-)

It is better to link to the actual documents. The reason being that posts are never maintained. Whereas I do my best to maintain at least the UK document bang up to date. And correct any mistakes.

At this exact moment, I think the post is also accurate (though I have not checked in detail). But if someone comes along next month, next year, and follows your link, whatever the information is in the link might well be out of date.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

glutendairysoya profile image
glutendairysoya in reply to tattybogle

I don't recall it was awhile ago now! but thank you for this.

They only have Levothyroxine from a company called Mercurypharma at my local boots pharmacist as I have moved since then.

FancyPants54 profile image
FancyPants54 in reply to glutendairysoya

Try that one. It's not one I have heard many having issues with. I can't take Teva, but I was fine on Mercury.

You will feel odd at first. With a TSH of over 7, you really do need to provide your body with it though.

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