What can I do if Levothyroxine doesn't work for me despite my G.P telling me it does?

[Shredder]

Hi all unfortunately I have been put back on Teva levothyroxine as a health board who once prescribed the wonderful Armour now refuses to supply it as I live outside the area even though I have to attend their hospital for endo appointments. I have been put back on levo 100mcg and since being on them my weight has ballooned again and my hypo symptoms have returned with a vengeance plus I have horrendous insomnia. Are there alternatives please that work and do not cost hundreds oer month?

[dylansmum]

I think if you Google Teva, they have had problems in the past with their Levothyroxine products. I did contact them, without any success, to explain I didn't think their products were working! Like you all my original symptoms returned when on Teva. Unfortunately that's all I get prescribed now, I think maybe they are cheaper than the rest. I just take the tablet and hope they have improved.

[Hypopotamus in reply to dylansmum]

I find it ironic that one of the arguments against NDT is that it is not as consistent as 'artificial' thyroid hormones.

There should be research into why some brands of all the thyroid medications work for some and not others.

[Hidden]

With Teva I think it's the fillers that mostly cause problems for some people. How long have you been on that brand and why don't you try a different pharmacy to get your usual brand?

[Shredder in reply to Hidden]

Thanks for the reply. I have been on this brand on and off since radio iodine treatment nearly 4 years ago. None of the pharmacies in my area or the surroundings stock anything other than Teva.

[Fruitandnutcase]

Dare I say it - sounds like you’ve got a doctor who thinks that if you are ‘within the range’ you must be well! What nonsense.

Hopefully you will get some good advice on here - I was hyper with Graves and am in remission so I’m afraid I’m not much help.

[SlowDragon Administrator]

Looking at previous posts you were possibly switched on to far to high a dose when you tried T3

Are you lactose intolerant? Hence Teva?

Ask to retry adding T3 alongside levothyroxine

But first you need vitamin D, folate, ferritin and B12 at good levels

We need to add T3 incredibly slowly. 5mcg in morning and after week add second 5mcg dose, then hold at that for 6-8 weeks

[Shredder in reply to SlowDragon]

Thanks again for the kind response. I was prescribed liothyronine before Armour by my endo but the dose was indeed too high. The tablets were so small they were difficult to cut. I also managed to try another brand of liothyronine from Greece which were slightly bigger and easier to cut. These were decent but sometimes they turned up when ordered and other times they didn't. Armour just seemed to suit me the best and to be honest (without sounding too dramatic) possibly saved my life as I felt so awful previously I became a shell of a man and suffered awful depression (which I have never suffered from before) because of the condition and medication that clearly wasnt working. Sadly I am going backwards on this horrible stuff at a rate of knots.

[meme]

I would make a weekly or so appointment with your GP and take a list of your symptoms. Discuss each one at length. After a few appointments GP will be fed up of you and give you what you want! Also take someone with you, it always helps to get what you need I find. Good luck.

[Shredder in reply to meme]

My G.P is good in many ways but patients who do complain have been asked to find an alternative surgery unfortunately.

[Shredder in reply to meme]

Sadly my G.P would ask me to find another surgery if I did that. His hands are tied though because the health authority he works for won't presecribe even though my endo has written to them several times pleading with them on my behalf.

[pennyannie]

Hello Shredder

Can you challenge this switch in thyroid hormone replacement ?

It just seems totally ridiculous that you have been prescribed NDT by an endo but your surgery, presumably in a different post code, decides that you are better off being kept unwell, as they will be better off, not having to pay for your prescription costs, which for NDT are considerably higher than those of Levothyroxine.

I jumped the NHS ship almost 2 years ago now and self medicate with NDT.

It does necessitate purchasing from abroad which at the current time, isn't reliable.

In the first instance, if you are still under the endo who is happy with your progress on NDT can he not ' step in ' and help you with what seems to have become a financial rather than a medical decision ?

It does seem as though your health and wellbeing are not the first and the foremost issues being considered, but rather the surgeries balance sheet.

[Shredder in reply to pennyannie]

I have challenged it. I even wrote to my M.P. My endo also wrote to my health board withouy success. I even offered to pay the hospital where they were originally ptescribed the cost price instead of the nearly £200 per monyh I have been quoted privately.

[pennyannie in reply to Shredder]

It absolutely outrageous -

What ever happened to " first do no harm " ?