2100mcgs in a day!!!

I hope someone can help me. I have been Hypo for 10 years now and my meds have been increased over the years to now 300mcgs a day. I am not absorbing the Levothyroxine and after explaining to my GP that I am taking it an hour before food he has spoken to the Endo at the hospital. They have told him to advise me to take all my Levothyroxine on one day of the week which adds up to 2100mcgs!! I am terrified of taking this amount in one hit as I'm worried what t will do to my heart. The GP says it OK, but I'm just to scared to do it. I have lost faith in my GP/Endo as they won't even consider an alternative medication like NDT despite the obvious issues absorbing the Levothyroxine. Has anyone else experienced this?

28 Replies

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  • I must admit that I would be scared to take such a high amount in one weekly dose but apparently Dr Toft had an article somewhere stating the same as the above Endo. It was quickly removed soon after.

    I would suggest that the reduce your levothyroxine, you have been on it for ten years and it would seem you are still struggling. If levo doesn't suit you, what's the point in prescribing it? Ask if you can reduce your levo by 75mcg and add 20mcg of T3 on a trial basis for 3 months! Surely they cannot refuse.

    This is an excerpt re weekly dosing:

    Weekly L-T4 dosing may be helpful for patients that have difficulty taking medications on a daily basis.

    which states if patients having difficulty taking daily doses. I think it's the fact that you are not feeling well you want the offer of at least a trial of an alternative, so it's worth asking for a trial of T3 to a reduced T4.

    This is a link which is self-explanatory.

    web.archive.org/web/2010073...

  • Thanks, they won't give me T3, I've begged. They won't trial an alternative. They just keep saying to keep taking the Levo. To be honest, I feel rock bottom with it all at the moment. I can't face another 10 years of this, it's hell.

  • Can you change GP? We so need Dr Skinnerx

  • My Gp kept increasing my Levo but I don't convert T4 to T3 and so my T4 went way above range. I eventually went elsewhere and got T3 which worked. You must try anything to get the help you need. Good luck x

  • If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's online Pulse Article. Question 6 says doctors can add 10mcg of T3. Dr Toft was President of the British Thyroid Association.

    You may have no other course, if they are dead set against T3 to add it yourself.

    I am on it alone and feel very well. Levo was awful for me - more unwell than before diagnosis. 10mcg was added to T4 but it was Eltroxin and that was an immense improvement. Eltroxin has now been unavailable for a while and I know lots don't feel so well on generic levo.

    Ten years is far too, too, long to be on a road going nowhere. We need doctors who are willing to make us well.

    On this link you will see that Cytomel (T3) has no known side effects. That's the USA version of ** T3 ** [ originally said T4 - a simple typo ] but ours may not be so good.

    web.archive.org/web/2010111...

    web.archive.org/web/2010073...

    If we are not prescribed sufficient medication to bring back good health because instead of an optimal dose which makes us well, we are apt to be given medications for the symptoms rather than a proper dose of thyroid hormones. I just don't understand this method of prescribing. Plus we are always unwell - it doesn't make sense.

    [ Edited by admin to correct a slight typo. ]

  • I thought Cytomel was T3 our liothyronine x

  • No, our T3 is liothyronine produced by Amdipharm (aka Mercury Pharma). Far more expensive than Cytomel or Cynomel. I believe these are produced in the USA and Mexico. Ours is 20mcg and the others, I believe are 25mcg.

  • But in your post you have put that Cytomel is the US version of T$

  • Sorry should say US version of T4 not T$ !!!

  • I read an article in a USA site so assumed it was also made in the USA. Maybe it is produced in several countries. This is an excerpt and have omitted a part of it:-

    Cytomel (T3) like that which you buy in the USA is a lot stronger than Synthroid (T4). Usally at a ratio of 4:1 STRONGER. That's why Cytomel is distributed in quanities of (mcg, micro miligrams). I noticed "MG" for Cynomel. That would be milligrams and way too powerful if it was the same as our CYTOMEL. But the bottle it comes in says 100 tabs of 25 mcg. Which would be correct. Using my own comparison I find the Cynomel stronger than prescription bought Cytomel.

  • I simply cannot afford to buy T3 for myself as I've been off work unwell now for 10 months. I can't change GP as it's the only surgery :(

  • Ask the people around here how they buy it online. It's cheap.

  • I rather suspect that nothing is cheap after being off work, ill, for 10 months.

  • No helvella, nothing is cheap. I'm so exhausted now I can't work and have other symptoms like chronic nausea. I can't afford to buy food most of the time now, let alone meds. I have begged in tears to my GP to add the T3, but he wont, just keeps increasing the dose and telling me to take before food. Also, when I told him I was depressed due to the situation, rather than review the treatment again, I have been reffered to the Mental Health Team!!! I'm set to lose everything due to this illness and nobody wants to help me with the treatment that I need.

  • I found out at the conference on Saturday that nutri do a supplement to help conversion from t4 to t3. Maybe not a long term solution but may provide a boost while trying to sort out longer term replacement therapy.

  • I'd be interested to know what's in that supplement, Churchie. Did they say?

  • It is called t-convert by nutri advanced. I tried to post a picture here of the leaflet to let you know what is in it but can't. Not sure if you can't post pictures or operator error!

  • No, you can only post pictures on the original post or question.

    I shall Google it. Thanks for the information!

  • OK, so here we have it :

    health4youonline.com/nutri-...

    It's not much different from any other thyroid support type thing. Very much the same as the one Thora mentions below. Except they've given it a different name (conversion help, rather than thyroid help - which it is more likely to do, to be honest) and that the ratio copper/zinc is more doubtful. And it's more expensive. But at least it doesn't contain iodine.

    There are also a lot of 'may help's and 'thought to help's. Doesn't sound very convincing to me.

  • I think it is all different for different people. A case of try and see. I was please with my blood tests today that showed a reduction of TSH from 12.8 to 8.9 and ft4 up from 9.9 to 10.5 in three weeks when the difference is taking nutri adrenal extra and nutri thyroid. I'm not taking any medication on top of that but starting a t3 trial.

  • Yes, we certainly are all different. But that doesn't mean that some things aren't good for anybody.

    I didn't get on with Nutri Thyroid at all. It gave me bad stomach aches. But a lot of people thrive on it.

    Hope you do well with your T3 trial.

    Hugs, Grey

  • Hi,

    Your GP and Endo won't prescribe T3 at all probably because of the cost. T4 is very cheap at about £1.30 per pack of 28 tablets whereas T3 is over £100.00 for 28 tablets. I've been on T4/T3 combination for 6 months after being on just T4 for a year following thyroidectomy to remove thyroid cancer. Neither regime has improved my symptoms and so my endo has prescribed me Armour thyroid today at 1 grain and he will be writing to my GP to try and get him to prescribe it for me. He has said that my GP might refuse to prescribe and I might have to buy it on a private prescription. I've checked the cost of Armour for 50 days supply at the Boots pharmacy in the hospital and it costs £38.90. You can buy it cheaper online and probably at other pharmacists but I'm going to use this cost as a bargaining tool when I see my GP in a couple of weeks when I've had a chance to try it and see if I feel better. Hopefully, he will then prescribe Armour when there will be over a £60.00 difference in price. If not I will have to have a private prescription and buy my own even though I've lost my job because of the cancer. Perhaps you could try this tack and you might get somewhere.

    Good luck and please PM if you need some help.

  • ebay.co.uk/sch/sis.html?_nk...

    This is the link a fellow member sent me so that I could buy my own NDT.

    Please feel free to PM.

  • Thora, that is not NDT. It doesn't contain any hormone. That is a supplement conceived to support (stimulate) your thyroid, containing iodine. It also has copper. Neither of these should be taken on a whim.

    You really should get your iodine tested to see if you are deficient before supplementing because too much iodine is as bad - if not worse - than too much. And that is rather a high dose.

    High doses of copper will lower zinc. I know it's only a tiny dose compared to the zinc - the ratio should be 1.10 - but most people are copper dominant anyway. You really should get your copper and zinc checked before taking it.

    I know all the ingrédients are necessary to produce thyroid hormone, but that doesn't mean you should shovel them in. All things in moderation - i.e. the correct doses. But if your thyroid is beyond the stage of being stimulated, it really isn't going to help. You need replacement hormone.

    And it says that if you are on thyroid hormones, to consult your doctor. Are you on thryoid hormones? Did you consult your doctor? Personally, I wouldn't take this.

    Hugs, Grey

  • Hi Greys,

    Are you confusing me with someone else? I have been taking T4 and T3 since March this year and prior to this was on T4 only therapy for a year after having half my thyroid removed to remove cancer. I'm starting on Armour thyroid tomorrow and on the patient leaflet it definitely states that it is made from porcine thyroid hormone and says the mcg for both T4 and T3.

    Regards,

    Thora.

  • Whoops!!!!!!! Just checked the URL I posted above and it's changed. It did show Armour thyroid when I posted it but, it's obviously changed links.

  • Ahhh OK! Ouf! lol I thought you were taking the wrong thing!

    Anyway, naughty girl! You're not supposed to post things like that on here. lol

    Glad that's sorted out because that might have confused a lot of people! lol

  • Thanks for being so vigilant and noting my error.

    As regards not posting URL links, it was a link from someone on this forum who'd PM'd me a few months ago and I'd just cut and pasted and, in my haste, didn't think my actions through. Whoops once again!

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