Still feeling bad

[Zizzy1591]

Been on Levothyroxine for 11 days now and still feeling bad, tired, breathless with palpitations and just feeling awful, on a low dose at present, booked in for another blood test on 2 August. Will this awful fatigue go as I feel my life is on hold.

[Zizzy1591]

Thanks for your info, I did ask him what other blood tests were done, he said they were all ok except the thyroid test and that I had clinical hypothyroidism, he also told me that a blood test was done in 2011 and my levels were not normal but no treatment was given, which is annoying as I have been suffering with different symptoms since then and wondering what the hell was wrong with me.

[Anthea55 in reply to Zizzy1591]

Get a printout of your test results and post on here for comments, including ranges. What docs call 'ok' or 'normal' is not the same as optimal.

If you want to learn more about it take a look at the ThyroidUK website at thyroiduk.org.uk/tuk/index....

All the best.

[Zizzy1591]

Many thanks for reply I will ask for test results, I am new to this and don't really understand what is happening to my health Dr seemed to be very dismissive about it as though it was no big deal.

[decembersignup]

Eleven days is not long, it takes time for the body to adjust and get used to it. When I took my first dose of levo, just over a year ago, just 25 mg, I was sweating, passing out from the heat, my eyes hurt a lot and all sorts, months later I was taking a higher dose with none of that.I still get breathless sometimes and this is a really big thing at times, cannot even go for a walk. But you need to work out how to adjust to the levo AND if there is anything else going on at the same time that needs to be dealt with separately. Unfortunately the doctors etc are quick to say that it cannot possibly be due to this or that and make out your imagining things or making too much of them rather thand eal with them. Sometimes a few days of steroids gets rid of the breathlessness for a bit and then it comes back, this proves that the levo has unbalanced your adrenal glands for a bit, but they usually adjust back again in their own good time. You can help it along with a lot of exercise - even if you are fatigued - sit on a chair and do what you can - and a better diet etc. If you feel tired it is often to do with adrenal glands.

[Zizzy1591]

Thanks that's really helpful

[Zizzy1591]

Many thanks that's very helpful just finding it hard dealing with symptoms

[greygoose in reply to Zizzy1591]

The symptoms will improve as your levels increase. Just make sure you get tested 6 weeks after any change in dose.

When you go for a blood test, make your appointment for early in the morning - before 9 am. Fast - just drink water - and leave 24 hours between your last dose and the test. And always ask for a print-out of the results, it's your legal right to have one, and you need to keep records.

Take your levo with a large glass of water, one hour before eating or drinking anything other than water; two hours before other medications or supplements; four hours before iron, vit D or estrogene; six hours before magnesium of any kind (this includes medication for indigestion). And avoid all forms of unfermented soy.

[Maggie45p in reply to greygoose]

That's really helpful to know, thank you. I had my levo increased from initial 25mcg to 50 last month and asked Dr how is best to take it, ie with food, drink. He said No, just take it in the morning. So I have been taking it with bisoprolol and a cup of tea. Reading your post, I shall start to do it properly!

[greygoose in reply to Maggie45p]

Doctors know very little about thyroid.

[Zizzy1591 in reply to greygoose]

Many thanks I will remember to do that, I'm wondering whether I will get some objection when I ask for a print out 🙂

[galathea in reply to Zizzy1591]

Legally you are entitled to all the info your doc has which he is keeping on his system.... The 1998 data protection act gives you the right to see everying including test results. He can ask you for a contribuition towards paper and ink....

Xx

[Zizzy1591 in reply to galathea]

Many thanks x

[greygoose in reply to Zizzy1591]

If you do, just remind them that they are breaking the law. The Data Protection Act gives you the right to have your results - they are YOUR results.

Just as a point of interest, here in France, the labs give one copy to the patient, and one copy to the doctor, and the doctor expects you to have read your results before you go to see him. Except in hospitals, where the left had has no idea what the right hand is doing, anyway! lol

[Zizzy1591 in reply to greygoose]

Many thanks x

[Zizzy1591 in reply to Zizzy1591]

Just back from Dr who was really helpful said symptoms should go and to wait for next blood test, gave me print out of results which mean nothing to me can anyone help to decipher:-

"Serum TSH level"

5.12 mU/L (0.30-4.40) "High"

"Serum free T4 level"

11.0 pmol/L (9.0-19.1)

Thanks 😎

[Zizzy1591 in reply to greygoose]

Just read your post about unfermented soy, I have been drinking soya milk for years, could that have any influence on this condition?

[greygoose in reply to Zizzy1591]

It most certainly could. Soy affects both the thyroid gland, and the uptake of thyroid hormones by the cells, and makes you hypo. If you give it up, you might find, in time, you no longer have a thyroid problem.

[Zizzy1591 in reply to greygoose]

That's really interesting I had no idea soya milk could cause problems. I will stop using it and see if things improve. Many thanks for your advice.

[greygoose in reply to Zizzy1591]

Yes, sorry, couldn't go into detail last night on my tablet. But what happens is, the soy impedes the uptake of iodine by your thyroid gland. So, with less iodine, the gland makes less hormone.

Then what hormone there is, cannot get into the cells because the soy blocks it. So, double whammy! If you continue like that for long, you become hypo.

Things should improve, given time, when you stop consuming the soy. But, give it time, it won't happen over-night because your stocks will be depleted, and you will have to build them up again.

[Zizzy1591 in reply to greygoose]

Fantastic info thanks for getting back to me 😊

[Olsbird]

I'm not so optimistic as some of the other posts and hope they are right and I am wrong but.... i had horrible side effects like the ones you list on 50 mcg of levo. Noone wanted to accept I had side effects and I suffered feeling increasing!y worse and unwell for 7 weeks until I could stand it no longer and paid to see a private gp on the thyroiduk list. He halved my dose to 25 and within 24 hours started to feel better. Subsequently my gp tried twice to increase me from 25 and each time within 24 hours of increasing the dose I started with side effects again. Eventually got referred to an idiot endo who won't seemingly contemplate offering me anything else to try and thinks I just have to get on living with thyroid symptoms. So I'm on the hunt for a less cretinous endo and failing that I will resort to trialling ndt and t3 myself.

As I say hopefully I'm wrong and the answer for you will be something more simple 😂. Good luck

[galathea in reply to Olsbird]

Ooh, i had an endo like that.... He said he didn't believe in t3,, I assured him i did not think that thyroid was a theological subject....

After seeing him I did get much better. I decided he knew so little, that i could do a better job self medicating. And i was correct!

Xx. G

[Zizzy1591]

Thanks for that, I can't believe how complicated this condition is, and how difficult it is to get successful treatment, I just hope I start feeling better soon as it's getting me down, so glad I came across this site. Hope your condition starts to improve as well.

[Ruthi]

Zizzy1591 don't despair. Most people do very well on Levo. It's just the few who don't that hang out here for any length of time. BUT it's a very slow acting medication, so it can take months to work. Just hang in there.

[Zizzy1591 in reply to Ruthi]

Thanks that's very reassuring.🙂

[Olsbird in reply to Ruthi]

So true. I think thyroiduk needs to rebrand itself victim support!!