New thyroid patient

[mrneduc]

I had half my thyroid removed on 21 June this year. 6 days post op I became ill with very high blood pressure and weakness and blood test showed TSH 10.6. Been on levothyroxine 50 MGM for 1 week and feel desperately ill each time I take it. Will it get better? I get shaky, weak, headache, eyes are difficult to focus and am spending most of my day lying down in a darkened room

[shaws Administrator]

First, I am very sorry you had half your thyroid removed. It does come as a shock when we first take levothyroxine and feel much worse. Your dose is a starting dose and, hopefully, as it is raised by 25mcg around every six weeks or so you will begin to feel an improvement.

Many on this forum will commiserate with you but many doctors/endos seem to be unaware how some patients feel.

When blood tests are due always have it at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This allows our TSH to be at it's highest as doctors/endos are apt to treat us according to it and may adjust reduce dose unnecessarily.

It is a learning curve but at least you will get responses of some who've had an op such as you have had.

Always get a print-out of your results, with the ranges (these are important as labs differ and it makes it easier to comment). Also ask GP to test B12, Vit D, iron, ferritin and folate. We are usually deficient.

Levo should be taken first thing on an empty stomach with one full glass of water and wait about an hour before eating (food interferes with the uptake). Or you can take it at bedtime as long as you've last eaten about 3 hours before (if meal contains protein).

[Katepots]

Hopefully you'll start to adjust to it soon, although that is a starting dose so it should be raised every six weeks until its optimum and you feel well.

Saying that some people are sensitive to the fillers so you could have a chat to your Dr and see if there's other brands he can switch you to.

Have you considered NDT (Natural Dessicated Thyroid?

[mrneduc in reply to Katepots]

I dont know anything about NDT except I've heard it is a problem to get from the GP. I don't mind trying it and if It's not too expensive paying for it. Worth it to feel well. Bit overwhelmed at the moment and trying to process information

process

[PMRandRA in reply to mrneduc]

I couldn't get NDT on the NHS. But seem to have hit the sweet spot with Levo now. It does take time and a lot of trybthis, try that ( amounts)

One thing potential NDT users should take note of is that it is made from pigs thyroid. So beware of that for religious reasons. 🌺

[Katepots in reply to mrneduc]

Yes sadly you won't get it from the Dr but we are working on that! Have a look at the ITT campaign on Facebook. Have you signed the petition?

I'll PM you with a link to where I get my NDT from.

It's about £60 for a years supply. I feel so much better on it pretty much normal (whatever that might be!)

See how you go with the Levo once you're on a more optimum dose then if it's not for you there's an option.

[mrneduc in reply to Katepots]

That doesn't seem too expensive but how do you determine your dose?

[mrneduc in reply to Katepots]

I can't seem to find the link but could be my tech incompetence

[Katepots in reply to mrneduc]

I've pm'd you again.

[mrneduc in reply to Katepots]

I don't know why but the pms are not coming through. I press the 'message' button and nothing from you or anyone since my initial welcome from admin

[Katepots in reply to mrneduc]

Oh there's lots or replies, msg admin. Really need to sort that.

If you put a search for thyroid s on Facebook the site comes up.

[jimh111]

If you feel ill on taking it this will not be due to the levothyroxine as it takes many days to build up in your system and also to pass out. Any effect on taking it is likely to be due to fillers or placebo effect.

[SilverAvocado]

I had my thyroid removed in 2 separate operation in 2013. Like you, I couldn't manage on just half a thyroid, but I found doctors were extremely reluctant to believe that was the case - it goes against all their assumptions.

You have an additional difficulty in that thyroxine takes quite a long time to leave the body. The blood test you had a few weeks ago will make things look much less bad than where it would have settled down to in a few more weeks. So it can be a hard road to getting the help you need. 50mcg is a bit of a Mickey mouse dose I was given similar between my two operations, and I never got much improvement on it.

Everything goes slowly in thyroid replacement. There is not much you can do except make sure you get retested regularly and have your dose adjusted. Best practice is every 6 weeks, but I was only offered every 3 months.

I was in bed most of the time at first, too. Things were so bad that it was only once I got a bit of improvement that I could see how bad it really was. I think it's important to go really easy on yourself, give yourself permission to rest and just take each day as it comes.

[mrneduc]

Thanks for feedback everyone. I know it's early days but I have never felt so ill in all my 70 years as the first 4/5 hours after taking the Levo. I seem to feel better late afternoon and evening. I don't know if it's being hypo or the meds or both but I had assumed it was the Levo but maybe that's not the case after all. Seeing GP tomorrow so will see if I get anywhere

[gabkad in reply to mrneduc]

You could try taking the levo in the evening on an empty stomach and see how that works out.

[mrneduc in reply to gabkad]

Yes I'll give that a go -thanks

[lilmama16]

I was ill also like this in the morning...imagine trying to work. I decide to take the medicine in the evening and I feel a whole lot better. I still have other issues that I deal. I have less headaches when I take the medicine at night. I hope this help you! Keep fighting....very serious illness!

[mrneduc in reply to lilmama16]

Saw gp today who has never heard of anyone having a reaction to Levo in the way I seem to have. I'm seeing her next week after some trials re dose and timing. Also my Bp has been really low - unusual for me- so trying to leave out one of the meds. Wonder if low Bp is a feature of low thyroid ?

[helvella Administrator Thyroid UK in reply to mrneduc]

Hypothyroidism can be a cause of high or low blood pressure.

[Katepots in reply to mrneduc]

I have a really low BP think there's definitely a link.

[helvella Administrator Thyroid UK]

There are several thoughts:

It could be the specific make of levothyroxine. In the UK we have four makes (Teva, Mercury Pharma, Actavis (also sold as Almus at present) and Wockhardt). Some people, quite a few, find they cannot tolerate one or other make.

When you are on an inadequate dose, it looks as if your body goes into catch-up when thyroid hormone is available, but then relapses into hypothyroidism when it runs out. (The peak blood FT4 from taking a tablet is usually after about two hours.) It isn't that literally all the T4 disappears after 12 or 18 hours, but it can seem like it.

I have no idea what happens to thyroid hormone levels during and after a half thyroid removal. Sorry.

[mrneduc in reply to helvella]

Because it's early days for me GP said don't take Levo for next few days and see what happens. Could be my remaining thyroid will compensate- somehow don't think so . Mind you my almost thyroid cancer (90% chance) turned out not to be- I put it down to prayer so why not be hopeful

[SlowDragon Administrator in reply to mrneduc]

Ask your GP to test your vitamin D, folate, ferritin and B12. If these are too low we can't use the thyroid hormones

What brand thyroxine have you got? If it's Teva ask to try another brand - lots of people have found Teva upsets them

Taking Levo at bedtime, lots of usfind much more effective and easier to tolerate (no food or drink other than water 2 hours before) -

[mrneduc in reply to SlowDragon]

Any particular brand to replace Teva or will any do? I suppose it's an individual thing

[mrneduc]

Yes I've checked it is Teva. Will speak about this and other stuff mentioned to GP next week. I didn't like taking it at night as I woke up with nightmare and pounding heart but will try again in a week or so - thanks

[helvella Administrator Thyroid UK in reply to mrneduc]

The sensible UK alternatives are Mercury Pharma and Actavis. (Wockhardt is only available in 25 microgram tablets.)