Awful Levo : I've been taking Levo for around a... - Thyroid UK

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Awful Levo

19 Replies

I've been taking Levo for around a week. My 3rd try. This stuff is poison to me, it makes me sleepy, bloated, anxious, achey and tired.

My fts are in range but my TSH is not. I feel good, I feel healthy, I'm slim. Is it really necessary that I take this ? Are there any dangers to not taking it ? i don't look or feel hypothyroid. But a few times I've posted on here I've been told I'm getting worse I'll get sick and that I have an autoimmune disease that will never go away and generally just bad doom and gloom vibes about the whole deal.

Does anyone not take Levo and feel ok? Or anyone's levels corrected themselves ?

Thank you x

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19 Replies
Peanut31 profile image
Peanut31

If you have antibodies present and an autoimmune disease (Hashimoto’s) you will not get better without medication.

There are certain things you can do to help yourself with Hashimoto’s, going gluten and dairy free, take 200 mcg of selenium daily, and make sure your vitamin levels are good, vitamin D, B12, iron, Ferritin.

You have said your TSH is out of range which is why you have been prescribed Levothyroxine.

A starting dosage is 50mcg and it takes time for your body to adjust to the medication then you must have another blood test 6 weeks later with an increase of 25mcg each time.

I speak from personal experience I was diagnosed by Hashimoto’s by a Endocrinologist, but said no medication would help, within a few months I got worse and my TSH was raising.

I was put on Levothyroxine when I went to my GP for help and by that time my TSH was 12.2 and I felt absolutely dreadful.

I’m now on 100 mcg of Levothyroxine, I’m getting better, but not on the correct dosage yet.

Best wishes

Peanut31

You say that your thyroid hormones are in range, but are they in the top quarter of their ranges where they need to be - high TSH suggest that they are not. If they are, and you still have high TSH, you need an endo referral to find out why. If you had no symptoms, why were you prescribed levo? You might be sensitive to some of the excipients in the pills - eg acacia powder - did you have the same brand every tome and did you stick it out for at least 6 weeks before stopping?

in reply to Angel_of_the_North

I don't have any symptoms. He actually said I don't need Levo, it's me that was so disturbed by the comments on here that I need it, so I take it. I don't have any symptoms at all. I gained weight when I stopped smoking a year ago, but it's slowly coming off.

My endo said what's happening to my thyroid is a normal process.

But when I come on here I'm told if there's anti bodies I need Levo. She told me antibodies can be present in any thyroid disease. Even transient

X thank you guys

Angel_of_the_North profile image
Angel_of_the_North in reply to

Not all thyroid disease has antibodies, but generally antibodies mean that your thyroid is slowly being destroyed. I still don't understand why your thyroid was tested if you have no symptoms. If you have no symptoms, no need to take replacement hormones now, but you might need them in the future. If you go gluetn free now and supplement selenium (and keep vitamins a a good level) you might be able to stop any further damage, but that tends to be only when TSH is still around 3 - still, you might be OK.

in reply to Angel_of_the_North

Thank you for this reply x

My TSH is 11. My doctor told me come back in 6 months ! But because I have anxieties over what I'm being told on here, I demand to take Levo thyroxine home with me.

My FT3 is over the range.

My FT4 is within but low

X

Angel_of_the_North profile image
Angel_of_the_North in reply to

Most people would probably have many symptoms with those levels, but there is a small subset of people who can get by with a higher TSH - perhaps you are one of them. Does show that your thyroid is struggling, though, so you need to give it all the support you can. Unless, of course, you were taking a B vitamin or another supplement containing biotin which could make the test results invalid. I think you will need replacement hormones soon.

in reply to Angel_of_the_North

I'd like to take them, because I'd like to live feeling as good as I can.

But I don't know why I gain weight taking it and feel so sick and run down. I also get a lump in my throat

I feel like I'm stuck between a rock and a hard place

My doctor doesn't listen when I tell him how Levo affects me.

It's not easy to take something that saps my energy when I have two young children, it's summer, and I work 2 jobs. I want to be full of energy, not lounging around because of some pill.

I also can't gain weight. Aswell as can't lose it.

Well everytime I've put a post in here I'm told it's Levo or the highway :-( guess I'll have to take it and get fat

Angel_of_the_North profile image
Angel_of_the_North in reply to

What about trying NDT?

in reply to Angel_of_the_North

Yes that's a good option to try.

Do you think it's possible I need I start on 25 and build up? Could that b a reason I can't tolerate it because Ive been going in at 50, 75 and even once 100

in reply to

I get seriously bloated, I look pregnant , puffy face, can't go in the sun painful belly kind of bloated x

Angel_of_the_North profile image
Angel_of_the_North in reply to

Very few people seem to feel anything but worse on 25mcg. 50mcg is Ok as a starter for most, but you also need decent b12, folate, ferritin and D3. have you tried digestive enzymes with your meals and/or an antihistamine before levo (to see if you are sensitive to any of the fillers). You could start on half a grain of NDT which is about 30-35mcg levo equivalent. It might be making you feel worse as your thyroid is heaving a sigh of relief and going to sleep now it's got some help (but your dose isn't yet high enough to replace what you were making).

in reply to Angel_of_the_North

I haven't but I'm making a list of your suggestions.

When I bloat it feels like I have too much stomach acid, it comes into my throat a lot and I feel that's why I bloat.

Without ndt, is your recommendation to start 50 along with making sure vitamins are high enough? It's so hard to push through the bloat and sleepiness. Maybe it gets worse before better

Do you take Levo?

Angel_of_the_North profile image
Angel_of_the_North in reply to

I take T3 only, but I have secondary hypo and low FT3 and TSH, so situation is a bit different. More people have low stomach acid than high - not digesting food makes you bloat and have reflux, so try digestive enzymes (not necessarily Hcl, you might need help with carb and fat digestion as well as protein). The normal starter dose for levo is 50mcg, so I'd try that, together with supporting gut and digestion and optimising vitamins and see how you are after 6 weeks.

Justiina profile image
Justiina in reply to

That type of values could be related to iodine deficiency. That could explain why you feel fine , t3 keeps you going until T4 drops low enough and then you get symptoms. I had low ft4 but highish ft3 and felt somewhat ok and for me the cause was low iodine. Iodine normalised my thyroid values.

To me it worked , not saying it is fix for all. But if none of the thyroid hormones suits you and you feel no benefit from any type of thyroid replacement and there is no reason not to take iodine ,id try that.

in reply to Justiina

Hi Justiina,

Thank you too for taking the time to reply to me

I also have a high FT3, actually over the top end

And my t4 is low , but has risen a little over the last three months. But so has my TSH

I've bought some kelp tablets will that be enough?

Justiina profile image
Justiina in reply to

I only needed 150 mcg but i had to increase slowly over the weeks as iodine made me feel sick. I had just iodine tablets , i dont know how much kelp has iodine.

If i felt awful my doctor recommended to decrease or take a break and then try again, my thyroid levels were controlled to make sure nothing bad going on. I had tried iodine before but took too much (upto 500 mcg which was way too much for me). Iodine didnt improve my wellbeing but had to be done as TSH kept rising. And i wanted to ,easier to fix than try thyroid hormones. In long run iodine deficieny causes full blown hypo and i hope i have dodged to bullet at least for now!

So if u try iodine be careful with it and have yourself tested so you know what is going on and is iodine working for you.

Gambit62 profile image
Gambit62

The problem with kelp is that it is very difficult to guage what the dosage is - and there have been problems with people overdosing on very low levels of kelp - though having said that I've used kelp for years.

GPs - and I suspect most endo's - don't manage to get their heads around how complex thyroid is. TSH is actually a hormone produced by your pituitary gland to regulate thyroid function - so it is a secondary measure and may be that the problem with TSH is more related to your pituitary if your T3 and T4 are okay.

If your biotin levels are high (eg through supplementation) then the tests for thyroid antibodies may not be accurate - as they find it difficult to distinguish biotin from the antibodies.

I went to GP because I was feeling a little run down and having some problems with bowel movements (though more on the diarrhoea than the constipation side). My TSH levels weren't particularly elevated but a second test showed antibodies so agreed to go on levo (there are two schools of thought about whether you wait for symptoms to become bad or start immediately).

Between the two tests I'd actually been taking higher levels of kelp and found myself feeling much better so increasing intake of iodine can help but the danger is that it may actually accelerate the auto-immune response and the destruction of the thyroid - though the genetics involved in that are quite complex and a long way from being understood - so definitely a 'could' rather than a 'will'.

I was started on 25mcg and that just made me suicidal ... couldn't get through to doctor so just started taking 50mcg which was still awful but not so bad. Had TSH tested and pronounced OK ... which I wasn't so being the patient from hell who really doesn't trust GPs to deal with anything that doesn't involve structural problem (eg trapped nerves, bumps, grazes - and not entirely convinced on those). I did slowly increase dosage - now on 100mcg. However, the body isn't very responsive to changes in T4 levels so it tends to take weeks for levels to really build up and the body respond so, unfortunately, it is a slow and often (literally) depressing process.

It may also be the timing of taking the levo - many take it in the evening/night to avoid the sleepiness that can result - and there are plenty of studies that show that many patients do actually benefit from taking it in the evening rather than the morning.

in reply to Gambit62

Thank you so very much for this reply. Thanks for taking the time to help me !!

With it being summer and eveyones out and busy and late nights I am noticing much more that I am not normal compared to other people. For instance I got home at 1:am after a lovely day and night out, it's now 12pm the next day and I'm exhausted still and very sleepy. Where's my friends are up and out at the gym, the thought of that makes me tired !!

So I'm going to have to suck it up and start the pill. It's so difficult to wake up everyday and take a pill that I know will make me look pregnant and bloat me up, even in the face. I feel a lot of stomach acid when I take it, does that sound usual?

My t4 is low , but in range.

They must think I'm the patient from hell too, but what do they expect when for a year they told me I'm not developing hypothyroidism, and it's all in my head etc, then when my TSH hit 11 he said I need it 😂 ! Told me it's not related to quitting smoking , but it started straight after. They're full of crap and I don't trust him. It's his fault I'm on here looking for help because he just gave me the thyroxine and sent me on my way, didn't tell me when or how to take it, any possible side effects, when I should be feeling better etc. So I come on here trying to find reassurance and positive stories !

X

Gambit62 profile image
Gambit62 in reply to

the stomach acidity is unlikely to be related to the levo - certainly not something I have experienced but may be others on her that are

if you are getting acid reflux then I would suggest getting vitamin and mineral levels tested - particularly B12 - it may be higher levels of bile caused by low stomach acidity rather than high stomach acidity and that is a symptom of the main cause of B12 deficiency - PA. Its quite common to have both PA and hashimotos ... and GPs aren't any better with PA than they are with hypothyroidism.

More on PA on this forum

healthunlocked.com/pasoc

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