After nagging my sister for ages she finally went to the docs and as I predicted I she's hypo and has been put on Levo (don't know which brand) . Now...I was very good and just told her to see if anything improved (keeping all the horror stories to myself) but sadly she is really suffering. She already has Arthritis and says her pains are now unbearable. She also says she's gained a fair bit of weight.
I'm not sure what dose she's on but she's been taking the same amount for three months so desperately needs an increase. I've advised her to go back ASAP re the increase and ask if they'll test her Vit D and B, plus get a print out but she says she's going to tell the doc she's not taking them any more and can't see the point of taking a higher dose when she's this bad on a low dose. I totally feel her pain (no pun intended) and I feel really guilty for being the one that made her go on this horrific merry go round in the first place
Obviously an increase may just help her but could anyone give me any advice please as to why she's suffering so much?
Thanks a lot x
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infomaniac
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Always difficult with family. You could try explaining that taking Levo could well prevent her from gathering even more conditions - raised cholesterol - blood pressure - so think of it as preventative medicine !
She needs the Full screening - TSH - FT4 - FT3 and Thyroid Anti-bodies - TPO & Tg. NHS rarely test all those and so many remain unwell. Private Testing available on the main website of Thyroid UK - under the heading - About Testing !
Meds should be reviewed every 6/8 weeks and increased accordingly and yes many of us felt worse before we felt better.
Good levels needed pf B12 - Folate - Ferritin - VitD - for thyroid hormones to work well in the body. Hope your sister perseveres and feels better soon ....
I can totally sympathise with your sister’s joint point.
I’m experiencing the same, especially my neck.
I’m currently on 100mcg of Levothyroxine, with blood tests due shortly ready for a further increase.
You need to ask your sister the following.
1: what dosage of Levothyroxine is she on
2: the make of it
3: she need those thyroid results including ranges.
She should of been started on 50mcg of Levothyroxine, many GP’s put you on 25mcg first, that dosage is for elderly patients or ones with heart issues and can make you feel worse.
She needs a blood test every 6 weeks testing TSH, T4 & T3, to see how how thyroid results are coping on that dosage. Three months is far too long to be on a dosage that is clearly not helping. She feels awful because she not got the right dosage yet.
Increases of dosage is 25mcg each time until she starts to feel better and results improve.
I was on TEVA Levothyroxine and it made me very ratty and angry. I changed makes when my dosage was increased and I’ve been better.
I’m learning that this thyroid business takes time.
It’s awful when you feel so ill everyday you just want to shut yourself away.
If the GP will not test full thyroid, then your sister will have to pay for private bloods. Medi checks or blue horizon offer this.
Always make sure that thyroid blood tests are taken first thing in the morning and don’t take Levothyroxine that morning. Only drink water and no eating. This gives the best thyroid results in order to gain that increase from your GP.
Your sister is entitled by law to a copy of the lab results from her GP, and they can no longer charge.
Don’t be fobbed off by the receptionist or GP, the results are normal or, they can’t release the results. That’s a load of 💩.
As you have said her vitamins need testing as well.
Has she had antibodies tested as well, as she could also have a autoimmune disease (Hashimoto’s) I also have this.
Once you have your sisters results post them on her, and the experts will help.
I suspect she has Hashi's Peanut as that's what I've got too. I keep asking her stuff about what she's taking but she's a proper scatterbrain! I'm hoping that an increase will help her but I can understand why she doesn't want to. I was diagnosed in 2011 and I really didn't show any improvement until I started T3 a couple of years ago.
Unfortunately she's in the UK and I'm in Spain. She thinks I'm the Oracle on all medical matters...but I've picked it all up from you good people. She couldn't believe I knew what medication she was on. Bless her! I've advised her to try and clean up her gut, which she is doing, so that's a start I think. Honestly I've been emailing her constantly telling her to get a print-out but STILL haven't seen it!
she's going to tell the doc she's not taking them any more and can't see the point of taking a higher dose when she's this bad on a low dose.
I think you need to explain to her that hormones aren't like aspirin. Her logic is faulty. With hormones you always have to start low and increase slowly, to give the body time to get used to them. And, very often, a starter dose - especially if it's only 25 mcg - will make you feel worse before you feel better. Her body has probably been running on low thyroid hormone for a long time, and has adjusted to it. Now, it has to readjust to having hormone again, and that's not always easy. And, the longer she was without it, the longer it will take her body to get used to it again.
But, the good thing about thyroid hormones is that, as you increase the dose, it gets better and better - if you do it slowly! But, if you stay on a low dose for too long, it can make things worse. So, the protocol is : start on 50 mcg, retest after six weeks, increase by 25 mcg and repeat the process until all the symptoms have gone, and you feel well. But, if you don't take it at all, you are just going to get worse and worse, and it's unimaginable just how bad you can get!
Does she know how to take her levo properly? On an empty stomach, etc?
She was actually put on 100mcg straight away which probably explains a lot. She feels loads better now she's off the Levo so I doubt I will be able to persuade her to go back on it...and to be honest I don't know if I would. She is borderline so maybe, just maybe she can turn it around somehow.
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11 years and counting, but still not under control
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