I am allergic to Levothyroxine, does anybody know what else I can take for hypothyroidism please?

I have tried all of the Levothyroxine preparations available in the UK, including liquid forms that do not contain lactose or acacia and have had a bad allergic reaction to all of them. After just one dose of 12.5 mg my breathing becomes VERY laboured and.I have to take an allergy tablet to get my breathing back to normal. Any suggestions please?

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  • Hi I cannot take Levo, tried 4 different makes originally. I have always taken armour,( or Erfa) it contains T4 and T3 so that is good. however, unless a wonderful GP they will not prescribe it "not on the list". I have to have mine on a private script. I use Springfield in London , by post I find them always the cheapest 020 8255-8096 Dedicated line, MOn, Tues, Thurs and Fri, 10am to noon. Price varies slightly according to rate of exchange.Some people buy it abroad or on the WEB, although it is only made by Forrest USA. Personally I would only have it on a script.

    I hope that helps.

    Jackie

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  • Hi Jackie, Thanks for the info, does that mean that if I just ring up the clinic in :London they will automatically give me armour or do they still have to have confirmation from my endo or gp? Thanks Sharon

  • Sharon,First you need a private script, from any doctor, then phone the pharmacy for a price , and pay on a card. Then send the script, it is just a few days. If seeing an endo who they know, they will accept a faxed script from said endo.First try the GP either NHS or she is allowed to write private script Mine will not, I see a private endo and she gives me a script. Some lucky people, with good/nice GP`s do get it NHS via GP.Only then pay for it yourself. It is much cheaper than buying T3 as some people do, and that is really expensive, also I think armour etc safer.Like Levo ,usually started on a fairly low dose and increased on tests but it just clicks in much quicker than Levo, a week at the most.I would retest after a month.

    If not clear, get back to me. Try the GP first.

    Jackie

  • Very clear thanks Jackie. Seeing the endo next week so I will speak to her first I have recently moved house and the GP Is new to me and doesn't know my history. Doesn't help that they've been waiting for my notes since January 2013! Thanks for the help I'll let you know how I get on. Take Care Sharon

  • Sorry Jackie, One more question approximately how much would I expect to pay for a private script and getting it through the clinic that you use please?

  • Hi It does vary slightly according to the dollar. Last lot I had was100 2 grains were £61. I take 2 and a half grains now as I also have 20mcg of T3 ( for low FreeT3) from the GP..If even this is no good some endo`s ( including mine) give just T3.Although that is also synthetic so may be a problem Armour is natural.

    Best wishes,

    Jackie

  • Sorry to keep asking but I am really trying to get it clear in my head. My T3 and T4 are normal it's only my TSH that's high 9.84 My endo won't give me any T3 because my Free T3 is normal so do I fit the right criteria to receive Armour? I was given T3 by another endo a couple of years ago and I felt great on it but everybody Including 2 endos and a GP have said I can't have it because my T3 is ok so I don't need it - confused. My argument is if it makes me feel better why not let me have it, all they keep saying is there is a risk of heart problems with prolonged use of T3. Oh God I am so fed up.

  • Hi That is fine. If your Free T3 is not at the top of range although in range, the T3 should make you be much better, symptoms wise and it may ( not always) lower your TSH just slightly Mine was below range to start with, years ago. No T3 then and cannot take Levo, so I was on armour. Before treatment my TSH which was 0.01 with treatment it went so low that it could not be measured. My endo knows that is how I need it. A good endo ( or any good consultant) only uses the blood test as a guide. It would be more dangerous to take T3 if FT3 was above range It is a very potent drug but safer in armour.or other NDT.Also make sure you have your blood tests and ranges, they all vary but still the same guide ( it is different assays at different labs). If endo has not given them ask his/her secretary for a copy + ranges and a copy of the letter to the GP. You are entitled to,. Also GP tests are from receptionist, they check with the GP, while you are waiting, in case they think you are mad! other wsie standard practice. I am sure you know not to take any thyroid meds ( or Beta Blockers) before a thyroid test on that day , until afterwards.

    I hope this is clear, you are welcome to get back to me if I can help.

    Best wishes,

    Jackie

  • Thank you very much for your very kind help. I really appreciate you taking the time to explain. My only problem now is that the endo I see was a consultant physician and has only just become an endo, so I don't think she's experienced enough to deal with somebody like me that is not a standard case. I have already prepared myself mentally for a battle with her because last time I saw her 5 months ago my TSH was she just kept spouting its got to be over 10 before I can do anything. If I ask for a second opinion I will have to wait another few months to get to see somebody else. Oh God I am so tire of this endless fighting just to try and get myslef well. Take Care Jackue Have a good Easter. X

  • Hi All consultants, apart from surgeons are consultant physician and their own speciality,You will always find it in their letter heading. It is why it is always better to see a consultant physician...... than a surgeon, who does not have the sane general medical knowledge.If the endo knows you have a problem ,it should be OK.If TSH that high you certainly need T3 or something like armour with T3 in it. T3 is fairly recent and endos are especially keen on it. My endo uses Levo + T3 ( separate) if that suites, if not armour, ( I also have a little T3 as very .low FT3 )If that no good she uses just T3, She tests for everything connected to thyroid disease. as all good endos should, first visit and as needed. I would make sure you have the GP letter from your endo after the last consultation , also all the blood tests he did( with ranges). If you have not had them automatically, then phone the endo`s secretary.You are entitled to them.

    Also next time take a list to use to remind you of everything you want to say.

    I hope that helps. Send me PM anytime, if you want to.( Click on my name)

    Jackie

  • Thanks Jackie, I'll keep in touch. Take Care Sharon

  • There are two natural dessicated thyroid hormone which are hypoallergenic. One is Nature-throid and one is Westhroid.

    thyroiduk.org.uk/tuk/treatm...

    thyroiduk.org.uk/tuk/treatm...

    If your GP is willing, especially as you are allergic to levo, he can prescribe for you on a named-patient basis, details above.

    Nature-throid has been in use for 75 years. I use it and it is the best for me. Westhroid is also made by the same company and neither have ever been recalled due to inconsistancy, of T3 and T4, which the British Thyroid Association claims about all dessicated thyroid gland hormone products.

    As Dr Lowe said - they make false allegations.

  • Thanks alot for thisa info. I am going to see my endo next week so I will have a word with her about a "Named patient" script. Hopefully as you say because I am allergic to levo she will want to help and I will get it on the NHS - but knowing my luck I won't hold my breath. Thanks again Take Care Sharon

  • She may be be more familiar with Armour Thyroid (which is the original dessicated thyroid hormone) but I believe Boots dispense Naturethroid.

  • Thanks for letting me know, I have read that people had good results with Armour so I think I will try and get her to go down that route. Thanks again.