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Nath27 profile image
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Hello everyone, I’ve been diagnosed in October 21 with Hypothyroidism/Hashimoto’s. TSH was 42,140, range: 0.35 -4.94 mUI/L. TPO: 306UI/ml. I started on 50 levothyroxine.After 6 weeks, went on 75 , a few weeks later, went on 100 levo. I was better but I still had many bad days and I was hoping to have my dosage increased. But on the 29th of march, my Tsh was 0,084 ( range: 0.35 -4,94 mUI/L, my FT4 was 12, 87 ( range: 9,00 to 19,08pmol/L), my endo decided to reduce my levo to 88. I don’t feel well at all, tired, headaches… Yesterday, I did my blood test.: Tsh: 0,892. (0,35 to 4,94mUI/L), FT3 : 4,19 ( 2,43 to 6,02 pool/L),FT4:11,71pmol/L ( 9,00 to 19,08). Today, my endo refused to increase my levo, told me that my results were better and to stay with 88 levo until mid June when I have my next appointment with her.Can someone look at my results and tell me what they think? Much appreciated.

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SlowDragon profile image
SlowDragonAdministrator

Were tests done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Ft4 is very low

FT4: 11.71 pmol/l (Range 9 - 19.08)

Ft4 only 26.88% through range

FT3: 4.19 pmol/l (Range 2.43 - 6.02)

Ft3 is unusually higher at 49.03%

Are you only taking levothyroxine, not T3 as well?

Essential to regularly test vitamin D, folate, ferritin and B12

Have you had these tested?

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested yet for autoimmune hypothyroidism also called Hashimoto’s

Or ultrasound scan of thyroid

Nath27 profile image
Nath27 in reply toSlowDragon

Thanks for the reply. I’m only taking levothyroxine. I did the test at 8 am, took my previous dose 24 hours earlier. I have not been tested for folate.

My vit D (nov 21):39ng/mL ( range:30-60). Take vit D 50000UI /once a month

Ferritin (March 22): 51/mL (range: 12 to 150) Take supplement as well.

Vitamin B12 (March 22): 858 pool/L (range: 138-652) .Take noe suppl every other day.

I had my antibodies tested in October,

Anti-thyroperoxydase: 306Ui/ml N:<34UI/ml

Anti-Thyroglobuline: 670UI/ml. N:<115UI/ml

I also had an ultrasound back in October , damaged thyroid, no nodules…

SlowDragon profile image
SlowDragonAdministrator in reply toNath27

So high thyroid antibodies confirms autoimmune thyroid disease

Have you had coeliac blood test done yet

If not get tested BEFORE considering trial on strictly gluten free diet

Suggest you get folate tested too

Nath27 profile image
Nath27 in reply toSlowDragon

No, haven’t been tested for coeliac. GP or endo haven’t even spoken about it. (To test ferritin, b12… or coeliac). I asked for it.

I will ask for folate .

Was the endocrinologist right to reduce my levothyroxine at the end of march ?

Nath27 profile image
Nath27 in reply toNath27

Thank you for your help.

My endo doesn’t want to increase my dosage, I’m stuck. I need to find another endocrinologist.

tattybogle profile image
tattybogle in reply toNath27

Was the endocrinologist right to reduce my levothyroxine at the end of march ?

Perhaps not , since ft4 was only 38% .. but you can see why they did reduce slightly , because TSH had gone below range.

It does make sense to try and find the lowest dose needed for any patient .. so trying 88 is a fairly reasonable thing to try.

Also, if it was only reduced at the end of march, then realistically you can expect to not feel not right yet , (even if 88 is going to be OK for you) , because in my experience the first 5 week after any dose change , particularly a reduction often feel a bit rubbish/ undermedicated ... so the endo's advice to stick with 88 for a bit longer and see how it feels once it's settles in properly is also fairly reasonable.

I found i first felt quite undermedicated, got a bit constipated etc. .... but then started to improved gradually from about week 5/6 onwards,, and by 3/4 months , i felt a lot better than i had before on the slightly higher dose ... so don't be too quick to decide 88 is not enough.

Also your blood results may be a bit different after a few more weeks on 88 , and if 88 really isn't enough the results may hopefully show that by TSH having gone up a bit again .. or fT4 going lower .

So you might be right thinking you need more than 88 , but you might not , it's maybe a bit too soon to tell.

crimple profile image
crimple

Nath27, your Endo was probably only interested in your TSH(which is a pituitary hormone) like so many other medics. Your TSH is below the range and therefore she thinks you are over medicated when in fact she should be looking at your T3 and T4 (which are the thyroid hormones) which need to be higher. So it's not just English Endos that get things wrong. Having Hashimotos (raised antibodies) means that your levels will fluctuate. I found a Gluten free diet helpful in stabilising things somewhat. Will probably help with your absorption and vitamin levels too. Do hope you can get back to a higher dose of levo and that things will improve for you. I am not a medic but thanks to this site I improved my thyroid health to the point that I can now function. It is not easy to try to turn around the thinking of medics, especially when you are trying to inform yourself!

Nath27 profile image
Nath27 in reply tocrimple

Hello Crimple, I can confirm that in France, we have issues with our doctors. I started a gluten free diet in January, I feel less bloated. When I had my blood test end of March, I felt really unwell. I ‘ve lost weight since January, but I ‘ m still in the overweight category. I don’t think 88 levo is enough. I’ m getting more headaches/migraines on this dosage. I need to find a good endocrinologist (maybe in Paris), if someone knows anyone , please let me know (in private).

This is all new to me, I’m reading a lot about it. I can appreciate that it can take a while to find the right dosage but right now, I feel that I have taken a step back.

Many thanks for your reply. I don’t feel on my own when I’m on this site.

SlowDragon profile image
SlowDragonAdministrator in reply toNath27

If already gone gluten free, no point testing for coeliac

Glad to hear gluten free diet is helping

Get bloods retested 6-8 weeks after any dose change or brand change in levothyroxine

Test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Likely to now need dose increased back up

Capella1 profile image
Capella1

hi welcome here peeple are nice and helpful

Nath27 profile image
Nath27 in reply toCapella1

Hi, thank you. I already notice it, it’s nice to have some support.

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