is this up and down normal with Levo?

[Hoop1888]

hi all. I was started on Levo in December 2022 and have since progressed from 50mcg to 75mcg.

When I initially went on it, I felt a lot worse than I ever did I.e. symptoms just got more severe. Then 10 weeks later, got a blood test and was moved up to 75mcg as, although my TSH had decreased, my T4 had stayed the same since starting treatment. I felt a positive difference after a fortnight of 75mcg, and felt like back to myself. Another 4 weeks later and I felt bad again ( but not as bad as I did on the original dose), and still feeling so. I’m due a blood test but really hoping they move me up. I just feel exhausted, depressed(even though on anti-D’s) quite hopeless. I miss the feeling of looking forward to life.

I’ve seen various mentions of optimal levels being correlated roughly with weight. Going by this , mine would be around 150 mcgg but I doubt they will allow that somehow.

Is it normal to feel improvements then go down again? And when optimal levels have been reached, will this be maintained?

[greygoose]

Yes, it's perfectly normal. It just means that you're ready for the next increase in dose.

I’ve seen various mentions of optimal levels being correlated roughly with weight.

Might be, but not certain. Some people need a lot more, some need a lot less. As you said, it's just a rough guide.

You cannot know for certain what dose someone is going to eventually need by their weight - their weight can vary enormously, for a start! The idea with any hormone is to start low and build up slowly, until you reach a dose that makes you well. And that's the key to it all: optimal is not a number, it's how you feel. So whatever anyone tells you about optimal numbers, if you don't feel well then it's not optimal for you.

With levo you should start with 50 mcg - or maybe 25 is you're older - and work up in 25 mcg increases every six weeks until you reach the dose that suits you best. Unfortunately, doctors don't seem to know that, and tend to dose by the TSH, which is 100% wrong! And can lead to yoyo dosing - and yoyo health. Don't ever accept a reduction in dose unless the FT3 is tested, never on the basis of a TSH alone.

[tattybogle]

Hi Hoop ,, yes it's absolutely normal.. most of us experienced that same issue of 'two steps forward / one step back' when we were going up through the doses.

don't be disheartened ... usually with each increase, the 'better' lasts for longer, and the 'worse again' is less worse each time. So stick with it . it takes time and it's very frustrating , but you are getting somewhere even if it doesn't feel like it .

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."

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It is possible to start on higher doses and just skip all the messing about of going up slowly , since most people will end up needing somewhere between 75mcg and 150mcg (125 is very common).

BUT..... the problem with doing that is some people who are started on eg 100mcg , it can be too much/ too soon , giving them symptoms of overmedication.. and they then have to go back to lower doses and start over again , which can make the whole process take even longer.......... and the problem is , there is no way to know in advance which people would be absolutely fine going straight from 50 to 100mcg after a few weeks and fine tuning more carefully from there , and which people will suffer overmedicated symptoms if they went to 100mcg quickly .

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This post will come in useful in if GP says they are reluctant to increase dose further "because your TSH is in range now" :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

and this one explains why getting TSH 'anywhere in normal range' is not necessarily good enough :

healthunlocked.com/thyroidu... ( the shoe size analogy)

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When doing blood tests and especially when looking for dose increase, you want to show GP the highest TSH of the day , and you want to be measuring the settled /base level of fT4 not the peak fT4 level that only happens for a few hours after taking the tablet.

So always do bloods early a.m (9 am ish) because TSH is highest then, (it falls gradually to it's lowest around 1-3pm)

delay taking that mornings tablet until after the test (take last dose 24 hrs previous to test) because there is a peak in fT4 levels during the first few hours after the tablet.

Do not have breakfast before test ..have just water . (eating breakfast can lower TSH by up to 30% in some people, but not in others)

Do this consistently for all tests so you can compare your results properly.

NHS don't see the need to give early a.m slots for thyroid tests , they will try to save the early appointments for official 'fasting ' tests.. there's no point arguing about this with receptionists , it's easiest to just say you can't make blood draw appointment later that 9.30 due to work commitments etc.

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hope some of that is helpful

[Hoop1888 in reply to tattybogle]

Thank you all, very helpful and re assuring

On a separate note, I was clearing out papers from my top drawer today and came across a letter from the doctor from 2017, which stated I had positive thyroid antibodies! I’ve read on here it means I have Hashitomos. I’d this true? And if so, docs didn’t feel it important enough to tell me.

[tattybogle in reply to Hoop1888]

Hi . yes over range thyroid antibodies (Thyroid Peroxidase antibodies) usually indicate some sort of autoimmune thyroid disease is present , it doesn't tell you which one though .... people with Graves Disease ( autoimmune HYPERthyroidism) often have raised TPOab too)

Doctors would not usually call it Hashimoto's . it is more usual for medical records to say autoimmune thyroid disease, if they say anything at all.

There is no treatment available for the autoimmune part of the problem , it is only the resulting hypothyroidism (or hyperthyroidism) that can be treated .

Not everyone who has raised TPOab will go on to develop overt hypothyroidism (TSH high / fT4 Low) , many don't, ........so doctors would usually just monitor your TSH occasionally ( annually ? ) as an early warning of hypothyroidism developing.

.and because they can't treat the autoimmune problem , they wouldn't usually tell you about it unless future blood tests indicated that hypothyroidism was developing/ had developed, and/ or you developed symptoms of hypothyroidism.

Thyroid Peroxidase is an enzyme from inside the thyroid gland .. when the immune system attacks the thyroid some thyroid peroxidase is spilled .. thyroid peroxidase antibodies fasten on to the spilled thyroid peroxidase as markers saying " this shouldn't be here , somebody clean it up please ". (and then some other part of the immune system comes along and clean it up ).

It is normal to have a small amount of Thyroid Peroxidase antibodies . they are part of the normal clean up system of the body (to deal with damaged /old cells) ... but if there are more then the normal amount , it is a sign that something has been damaging the thyroid...... usually autoimmune damage which is ongoing , but you may get 'one off' damage . eg seat belt type/ strangling injury.

just out of curiosity, how far over range were your antibodies ? do you have the 2017 result .

[tattybogle in reply to tattybogle]

p.s it would be interesting to find out why they were testing TPOab in 2017 though .. it's not a routine blood test,, they usually only do it if they already suspect a thyroid problem .. it is most often tested because they did a thyroid blood test for some reason and found the TSH was over range .. that then leads them to test TPOab to see if autoimmunity is the reason for the high TSH .

Did you have a thyroid blood test in 2017 ? (TSH / fT4 ) ?

What were the TSH/ fT4 results that led to them prescribing you levo ?

[Hoop1888 in reply to tattybogle]

Yes I’ve been having the odd thyroid blood test since like 2013. I had a test 3 months prior to that antibody test which I think came back with TSH of over 5 then when I got retested (including antibody test), it came down to 3.something.

When I got started on Levo at the end of last year, my TSH was over 9 but t4 was in range at 10 something. They said after the next test they MAY have to start me on medication but I went to the doctor to insist on getting a trial and they have me that. So I’m well over due a blood test next week to check my levels after 75mcg. After the initial 50mcg, my TSH reduced to about 6 but t4 stayed the same.