Levo help 😢: Hi, new to this forum- and... - Thyroid UK

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Levo help 😢

Melodica8 profile image
Melodica8
•11 Replies

Hi, new to this forum- and potential hypothyroidism.

I’ve struggled with weight gain most of my life, and feelings of lethargy, mind fog, anxiety and depression. I got fed up of not getting anywhere with the NHS so decided to go private. I saw an endocrinologist back in September, who said although my T4 was in the ‘normal’ range, it was down the bottom end (14) and decided that with my symptoms it’d be worth trying levo for 3 months & seeing how I felt.

So I started taking 50mg of TEVA levo. Now I know that TEVA has a reputation, and I’ve had a bad reaction to TEVA sertraline (I’m on 100mg) in the past. But I was hopeful this wouldn’t happen with the levo.

There’s been a remarkable improvement in my mood, my energy levels and brain fog- I feel like the lights have been turned on, I can get out of bed in the morning, I’m much less anxious and irritable. BUT I’ve gained so much weight, about 10lbs in 8 weeks. And I’m eating less than I was before. It doesn’t come down even when i reduce my intake. My breasts are also really sore and swollen. In fact I felt swollen generally. I’ve been feeling so depressed about my weight, (a stone and half in total since August) that I decided to stop yesterday. I’ve lost over a lb already, my breasts are less sore BUT I feel awful, like I did before. I’m seeing my endo again at the beginning of December.

Is it possible that it’s the TEVA brand that’s causing the problems? Or that I’m just not agreeing with T4? I’ve asked for a T3 blood test and he’s also agreed to try me on T3/NDT but has warned me it’s not available on NHS. Can anyone advise? Could it even be an interaction between sertraline & levo? Is there a natural thyroid stimulating supplement (other than NDT) I could take? Any advice gratefully received.

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shaws profile image
shawsAdministrator

Welcome to our forum and if you could copy and paste some of the above information onto your Profile (where it just states your name) history so that members don't have to ask you the same questions and can read about your background.

There have been some complaints re the 'new' Teva by a number of members.

Unexplained weight gain is the commonest question and it is distressing for those who are told off by their doctors/endos that their weight gain is the patients fault as they must be eating the wrong foods.

For a start they are very wrong - they know no clinical symptoms and weight gain is distressing as it is placed at the patients' door. Actually it is a clinical symptom of hypothyroidism and can also be due to levo, as both lower our metabolism.

Taking thyroid hormone replacements is supposed to raise our metabolism but not if we are on an insufficient dose (maybe by doctor who takes account of the TSH alone and adjusts dose according to TSH.)

Some need T3 added to T4 to raise metabolism to bring FT4 and FT3 towards the upper part of the ranges (these are rarely tested).

restartmed.com/levothyroxin...

stopthethyroidmadness.com/h...

When you get blood tests for thyroid hormones it has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

GP should test B12, Vit D, iron, ferritin and folate. Everything has to be optimal. The aim is a TSH of 1 or lower with FT4 and FT3 towards the upper part of the ranges.

Doctors don't usually check other than TSH and T4 but we have labs which will do private postal pin-prick tests if you wish.

Definitely GP should test B12, Vit D, iron, ferritin and folate - all have to be optimal.

Melodica8 profile image
Melodica8• in reply toshaws

Thank you for your reply. I think I’ve updated my profile now?

I had a panel of bloods done in July, here are some of the results:

Free T4: 14 umol/L (12-22)

Serum TSH: 2 mu/L (0.27-4.20)

Iron: 15.7 umol/L (5.8-34.5)

Cortisol: 458 nmol/l (133-537)

B12: 252 ng/L (197-771)

Folate: 7.3 ug/L (1.9-25)

Vitamin D: 77 nmol/L (15-120)

I’ve come across the first website link, which is very interesting. I don’t know what to do, I feel so awful- what’s worse, the weight gain & sore breasts or feeling totally exhausted 😔 is it worth asking my endo to give me another prescription so I can try a different brand? The T4 is clearly helping but it unerves me how my body is reacting to it. And is sore breasts a known side effect?

How much are the pin prick tests, and do you know how expensive t3/NDT is?

greygoose profile image
greygoose• in reply toMelodica8

Can you add the ranges to those results, please? They don't mean anything without the ranges, and ranges differ from lab to lab.

I think I should point out that levo, T3 and NDT do not stimulate the thyroid. Stimulating a sick gland is the worst thing you can do anyway. Levo, etc. are thyroid hormone replacements, replacing the hormone that your gland can no-longer make.

What were you taking when those labs were done? You're obviously under-medicated with a TSH of 2. Did you have your ferritin and antibodies tested?

Melodica8 profile image
Melodica8• in reply togreygoose

Hi,

Sorry ranges now updated.

Oh sorry getting mixed up- I knew t4 & t3 are hormone replacement. Just thought if there was something that could help my thyroid produce more.

Those b/t’s were done before I started anything. I’m going to have TFT repeated in 3 weeks before my next endo appointment, will adjust if necessary. No I’ve not had antibodies tested- is that for Hashimotos? And no ferritin either. I’m able to see the last few years of T4’s & TSH I’ve had on a graph- the T4 has been decreasing & the TSH increasing- interesting I thought. T4 never be higher than 15.5ish.

I’ve managed to get a different generic levo, Mercury pharm thus time. Felt so much better within half an hour if taking it. Let’s hope it doesn’t make me blow up again 😩

greygoose profile image
greygoose• in reply toMelodica8

It could be that your TSH is increasing at the same time as your FT4 because you are converting less.

Your FT4 is pretty low - I would have expected your TSH to be higher. But, we don't know what your FT3 is, and that could be making the difference.

I think it's pretty unlikely that you would find anything to force your thyroid to make more hormone long-term. And, it wouldn't really be a good idea to try. :(

Melodica8 profile image
Melodica8• in reply togreygoose

That’s ok, it was just a thought. I think because I wasn’t sure if I should even be on the levo, that maybe just helping my thyroid work better might be all I needed. But actually stopping it made me realise quite how unwell I have been feeling for so long. I’m just gonna have to accept the possible weight gain until I see the endo again and see what the next step will be then.

greygoose profile image
greygoose• in reply toMelodica8

The weight gain will stop when you're optimally medicated. That's something that not many doctors understand. Most of them have such a horror of 'fat' women that they blame all the symptoms on the weight-gain, rather than understanding that it is just another symptom of low thyroid. :(

FancyPants54 profile image
FancyPants54• in reply togreygoose

Oh! Don’t they just! My private hormone doctor and the endocrinologist I saw the other week totally laid the blame for my weight at my door. The hormone doctor has been vociferously going on and on about it for well over a year. Ignoring the fact that my TSH kept climbing once on Levo because she wasn’t giving me enough! Still blaming me. Harping on about low carb diets and the need to exercise. Just climbing the stairs exhausts me on the bad days.

greygoose profile image
greygoose• in reply toFancyPants54

Tell her that exercise and low carb diets are not recommended for hypos, because they negatively impact conversion!

FancyPants54 profile image
FancyPants54• in reply togreygoose

You mean tell them as I have hit this issue with at least 3 doctors now. As for tell them it hits conversion, you are presuming that they actually know T4 needs to be converted to T3 to actually give you some metabolic response. I'm not sure I'm going to give them that much benefit of the doubt.

greygoose profile image
greygoose• in reply toFancyPants54

You're probably right. They probably don't know!

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