Managing my own medication: Some advice please... - Thyroid UK

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Managing my own medication

Elaine22 profile image
20 Replies

Some advice please. Just visited docs, slightly low level vitD, 6.5. I'm on 50 mcg levothyroxine. Doc says that my thyroid tests normal, I questioned him on tsh being 4.55, saying that people feel better, when it's in the lower level. He said that, that is the levels they go by. He said what do u want me to do, obviously he has to go by them. So I asked him if I could up my levo to 75mcg. As a trial to see if I feel better. He said I can manage my own meds, that its down to me. Am I doing the right thing, I feel if I don't try the extra 25mcg. I'm not going to feel better, will be having bloods done in 8 weeks.

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Elaine22 profile image
Elaine22
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20 Replies
TTLady profile image
TTLady

Do it. Feel well xx

Elaine22 profile image
Elaine22 in reply to TTLady

Thanks, will let you know how it goes x

roslin profile image
roslin

Absolutely do it. I was on 200 with a tsh of 1.6 and my endo said I could increase it to 225.

(Still feel hypo though, think I have a conversion problem, but that is another story)

Roslinxx

Elaine22 profile image
Elaine22 in reply to roslin

Thank you, at least if I try this and it fails, I can move on to something else. Elainex

greygoose profile image
greygoose

Yes, 4.55 is way too high for someone on thyroid hormone replacement - well, too high for anyone, really. I'm not surprised you don't feel good. If you have the oppertunity to manage your own meds, DO IT! lol Not many get that chance. I would say you have plenty of room for manoevre and that extra 25 mcg might well do you good. Yes, you are doing the right thing!

Hugs, Grey

Elaine22 profile image
Elaine22 in reply to greygoose

Thanks Grey. It's a bit frightening, but I can't wait around. I'm getting on a bit now lol. We all want a better quality of life x

greygoose profile image
greygoose in reply to Elaine22

Why is it frightening? What's the worst that can happen? On an increase of just 25 mcg not very much is going to happen at all. And if you should find it's a little bit much for you, you just have to back down again and try maybe 25 on alternate days. Don't worry, you'll be fine.

Hugs, Grey

cal1971 profile image
cal1971 in reply to greygoose

I agree- great that he has let you 'manage' it yourself- perhaps an email with some reserach results with the TSH of under 1.0 might inform him? Or a change of Dr?

Best wishes.

shaws profile image
shawsAdministrator

Your TSH is too high and your GP is not knowledgeable about the thyroid gland as it should be 1 or below or suppressed. This is what Dr Toft ex of the BTA.

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This is a link to a similar question and you can see my answer in more detail.

thyroiduk.healthunlocked.co...

I believe a bit of experimenting with dosages is the only way to improve. I always make sure I have extra tabs for this purpose!

You need to educate your doc, your TSH is far too high. XX

Elaine22 profile image
Elaine22 in reply to

I told him that I've read lots on thyroid and people feel better when the tsh is the lower range. He said who r these people. So he asked me what do u want me to do. So I said if we up the levo. C how it goes. I said how long should I try them for. I don't know ask these people.

in reply to Elaine22

Good for you for sticking up for yourself !

I had to take the Anthony Toft "Understanding Thyroid Disorders" book (You can get it from chemists, I got mine from WH Smith, it's only £3.50) Mark the pages to show him/her that you should be in the low range ideally below 1 or even suppressed. I had to do this with my GP, she was keeping me at a TSH of 3! It's so obvious when you see their expression that they had no idea, lol! X

Heloise profile image
Heloise in reply to Elaine22

Maybe you should tell him to see for himself what these people are saying about their treatment by reading on this website. It could open his eyes.

Many people end up taking 125 mcg. of T4 so you may possibly be asking to raise your levo again after a few weeks.

Elaine22 profile image
Elaine22 in reply to Heloise

Thank you x

Jackie profile image
Jackie

Hi The obvious thing is that you need the "Proper "tests, TSH, T4 and Free T3, that may show a very different story. Apart from the fact that I think we would all disagree with the GP!! Can you pay for them on line?thyroiduk.org.tuk/te I use Blue Horizon, there or main site. quote TUK 10 then it costs £61 or finger prick easier and slightly more. The results come to you on line, well known Lab. Take them to GP and push for treatment.

Best wishes,

Jackie

Elaine22 profile image
Elaine22 in reply to Jackie

Thanks. I was thinking of getting all bloods done x

Jan49 profile image
Jan49

Have you shown him the Dr Toft book in the family doctor series. It states quite clearly that TSH should be <1. Don't let him put this responsibility on you if you feel uncomfortable, he is wrong in this instance. Apart from that, go ahead with the increase, hope you feel better soon x

Elaine22 profile image
Elaine22 in reply to Jan49

Thank you. X

polly3 profile image
polly3

Your TSH is tooooo high!.... do it!......x

MaryMary profile image
MaryMary

Have you got the range for vit D? On it's own it's hard to tell, but looks low. Maybe you could get the range from the surgery and re-post?

Mary

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