Levo..... Can you buy it legally online without a prescription?????

[blue999]

TSH now 0.3

Endo said I have to reduced my 150 levo to 125 as will affect my heart bones etc.

Told Endo I feel great -better than in years -had lost 1/2 stone in 6 weeks!

I said I'm not happy at all with this -only managed to persuade him to let me have 150 one day then 125 the next .

Next appointment is in 3months!

Have put the weight back on in 2 weeks and not feeling so energised -So tempted to try to buy online to top up to 150 per day again.

Would really appreciate your comments.

Cheers.

Blue.

[PinkNinja]

Do you have your blood test results? It would be interesting to know what your endo's argument was for reducing your dose. I might be able to find a paper that could persuade him to increase your dose back up again, but that depends on your TSH. I found a paper the other day that stated that having a TSH below range is better than having a TSH above range. There is no increased risk of atrial fibrillation or osteoporosis from having a low TSH whilst on thyroxine provided that your TSH is not below 0.04 (I think!) There is an increased risk if your TSH is above 5 or below 0.04 according to this paper. If your TSH is above 0.04 you may be able to persuade your doctor with this paper if I can find it again.

Carolyn x

[blue999 in reply to PinkNinja]

Hi carolyn,

Would very much like a copy of that paper - I do not have my results as endo said he would post!!!!

gp's said not got results -this was 2 weeks ago!-will chase them again.

So miffed as was feeling great on 150 -all endo seemed to care about was that I had lost weight so must be over medicated.

Do I wait 3 months to see endo again with this paper and stick to his recomendations (getting chunkier by the day!)

Or try to buy online? and fess up when I go for my next appointment?

[PinkNinja in reply to blue999]

I just took me ages to find it again. I thought I had saved it somewhere but hadn't! It's not the complete paper but the results and conclusion clearly state that the risks are increased with a TSH that is above range or suppressed but there was no increased risk of a low TSH provided it is not suppressed (i.e. below 0.04)

ncbi.nlm.nih.gov/pubmed/199...

Of course, he shouldn't just be going on TSH because there are other factors that can affect TSH including lower than optimal B12, cortisol issues or pituitary dysfunction. If T3 is within range there should be no problem with increasing your dose.

You could also get a hold of Dr Toft's book 'Understanding Thyroid Disorders" which is published in association with the BMA and clearly states that some patients may require TSH to be below range and T4 above range but that this is ok provided T3 is unequivocally normal. Dr Toft is former chair of the BTA who are responsible for the current treatment guidelines.

In answer to your question, it is not illegal to import levothyroxine for your own use but you can't buy it in this country because it is a prescription only medication. You may also find you can't get it from Europe for the same reason. I should add that Thyroid UK do not advise self-medication but understand that for some it is a last resort.

Perhaps talk to your GP, armed with your 'evidence', and see what he says about continuing to prescribe your 150mcg. Do try and get your blood test results. You could phone for them, stating that you are entitled to know your results.

I hope you get your 150mcg back, whatever the method.

Carolyn x

[blue999 in reply to PinkNinja]

Thankyou so much!

I'm going to take this with me.Hopefully GP will increase my dose for me as I don't really want to have to buy it if I can persuade him to put me back up to 150mcg.

Will also insist on getting a copy of my test results .

Cheers

Blue.x

[blue999 in reply to PinkNinja]

TSH 0.3 is only result I currently have.

[PinkNinja in reply to blue999]

A TSH of 0.3 is fine. There is no increase in risk, according to the research, until TSH goes below TSH 0.04.

Regardless of what you decide to do, going back up to 150mcg every day should be fine. I hope your endo agrees so you don't have to buy it yourself.

You could always make sure you haven't taken your thyroxine dose before your blood test. If you took your thyroxine before your blood test it could have given a low reading. Also it is best to have the test done first thing in the morning while your TSH is highest.

I hope that helps

Carolyn x

[Fruitandnutcase in reply to PinkNinja]

Just been reading your article. Very interesting - My TSH started off at <0.03 and two months later TSH was 7, when asked if I had any questions I said I was a bit worried about my heart and was dismissed with 'No, no, no problem at all'.

[PinkNinja in reply to Fruitandnutcase]

If your TSH is 7 you are at an increased risk of cardiovascular disease, atrial fibrillation and osteoporosis. I hope you got treatment to get that down!

Scary how some doctors are unaware of the risks of subclinical hypothryoidism...

[Fruitandnutcase in reply to PinkNinja]

Yes, they came down once the levo was added, I reached 7 when they stepped up my carbimazole and I waited another two months for my hospital appointment but reading that article I feel annoyed that my perfectly reasonable question was poo poohed!

As you say, scary.

Liz x

[dylansmum]

It just seems to be that once we start loosing weight, feeling good, our gp's just want to mess it up, and insist we reduce the levo dosage. I my opinion it's best to ignore going for check up blood tests if you feel ok and happy on the dosage you are on, otherwise they will reduce your levo, because that's what they do! Albeit to save money or maybe they just don't understand the blood test results.

[shaws]

If you cursor to the question dated January 25, 2002 in the following link you will see why your medication shouldn't be adjusted according to the TSH (they should ask 'How do you feel' and if fine, leave well alone).

web.archive.org/web/2010112...

[rosetrees]

Interestingly my last lab results in June was TSH = 0.2. The lab has printed on it "abnormal. No action required"