Update and more advice please

Ok so I saw my GP yesterday and as expected he wouldn't up my Levo dose, he seemed quite pleased that I'd had some minor improvements and although I explained I felt I'm slipping backwards again he gave me a prescription for another four months of 25mg of Levo and said we will review again then as it's still early days. So I'm not sure whether to just up my Levo myself as I have now have five boxes so I could double the amount to 50mg a day and see how that goes and then I could always source my own additional Levo or should I just keep on the 25mg until I can go and see the private clinic I want to see. The thing is I've just found out I can't have time off work until July and so even though I can get an appt before then I can't go because work won't let me have time off.

The other thing is over the last week or so I've been feeling really spaced out and just off I've also been getting headaches which I thought might have just been down to lady hormones but I'm now thinking it might be the Levo as today and yesterday they've been horrible and I feel like I'm in a bubble. I think it's the Levo as I took my tablet this morning and my head was really bad a couple of hours after but as the day is going on it seems to be easing up a bit.

I just feel a bit trapped really, I'm definitely not going to just put up with being on 25mg of Levo it's pointless and my GP has obviously just put me on it to appease me!

So I'm not sure if upping the Levo would help in the short term as I know I can see the other people in July which is only a couple of months away or whether I'm better coming off it altogether or just staying on 25mg until I can go the the clinic and hopefully get some NDT.

Any advice would be great.

thanks

14 Replies

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  • Munchlet,

    Do you have the results of your thyroid test on 25mcg?

  • Oh no I forgot to say that was the other thing , he didn't mention any blood tests at all which I only remembered once I'd come out but I haven't had any done since I've started Levo. I thought my surgery would automatically do one to check the levels.

  • Munchlet,

    I don't see how your GP can say you don't need a dose increase if a thyroid test wasn't done. It is usual to do a thyroid test 6-8 weeks after starting Levothyroxine and after any dose adjustment.

  • No I have to say I had so many things written down and when I came out it dawned on me that he hadn't given me a blood test form to get the levels checked. I think I'll sort out the appt with the natural clinic, get a blue horizon 11+ done and go to them with the results, at least that way I can hopefully get treated on the day. I feel a bit disappointed, as I was optimistic with my GP but I now feel he's just put me on 25mg knowing it won't really do anything and probably has no intention of increasing it, hence not doing the blood test. I think he probably feels I don't need it as I fall within the "normal range!"

  • Take your health into your own hands. At least if you have results of a blood test members can advise and help you. You can then go back to GP with your evidence (if he takes any notice of it) who may then increase your dose. If not you may have to 'go it alone'.

    Remember blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and also leave a gap of 24 hours between your last dose of levo and the test and take it afterwards.

  • Thank you Shaws I think I might just slightly increase my Levo to see if it makes any difference I'll have enough tablets to see me through to July even if I double it and then I can get to see the Natural Clinic and hopefully get switched over to NDT. I was tempted to self treat with ND but I think I'd rather go to a clinic to source it and also just so they can go over my blood tests do any other tests if necessary. I suspect I have other hormonal issues going on so at least they can look at the whole picture and hopefully get me on the road to recovery.

    I figure if I take an extra half of Levo every day to start with and then if that's ok just up to 50mg, which hopefully should be better than nothing!

  • The normal starting dose of levo is 50mcg and every six weeks/eight weeks an increase of 25mcg each time until you feel much beter.

  • Hi Munchlet, are you in the UK? Last time I checked they are leagally obliged to release you for necessary medical appointments that cannot reasonably be booked for your day off (eg weekends) and waiting 2 months for necessary evaluation and medication review is not reasonable There would have to be extraordinary circumstance ie some essential task could not be performed without you.. The only kicker is they do not have to pay you for time missed for the appointment, most reasonable employers would allow you to use some paid leave hours up though.

    It would be worth checking employment regulations or go on ACAS and pose the question, mention it is in relation to hypo as again I believe certain conditions receive some protection but I havent been on for a while or since diagnosis so I could be out of date!

  • I am in the UK and we can get time off but we have to show evidence ie Hospital appt or Dr's appt card and we are generally expected to go back to work after the appt. As this appt is in Winchester I'd probably need most of the day off and when I mentioned it to the Deputy Mgr she said as it's our busiest time of year I couldn't really take it as it was something I'd chosen to do!!! I'm in a school so it works slightly differently as we obviously get the school holidays off, although having said that we have to work some half terms as our contracts require us to work some of the holidays. It's a shame they aren't open Saturdays otherwise I'd just go then.

  • Hmm, I would dispute you are 'choosing' to do it. You are seeking specialist treatment after receiving inadequate treatment from your GP as evidenced by the fact he has not tested you as required after putting you on levo!!!! I would be inclined to see another one ASAP , I went through 4 before finding a keeper.

    Schools are covered by the same basic employment law as everyone else, I work as a civie for the boys in blue and my role is considered essential (it must be covered 24/7), they still have to release me though (granted they might say no during a riot! and do require adequate notice to arrange cover if necessary).

    They have no excuse for refusing to release you during half term as there are no children to be affected and surely you could swap a day if they are that pedantic.

    Definitely speak to ACAS &/or join a union! You are only at the beginning of your journey and are likely to spend a lot if time getting yourself sorted initially, it took me a year to get properly medicated and stable even with a decent GP. If they dont they run the risk of you being unfit for work and then where will they be, idiots.

    PS I have come to the conclusion GP's and employers assume you are laying it on thick/exagerating so if you dont.......

  • Thanks Phoenix I will speak to them again. I am a member of the Union already and didn't even think of that so if I don't get any joy I can contact them.

  • The union reps at my place are completely biased and use prases like 'thats not very fair on the company', I dont care whats fair(within reason) I care what is legal ( it wasnt!) If you have concerns contact local branch for an independant rep and explain why. Put those subs to good use. As bluebug says dont go in too hard and fast and point out a little consideration now will ensure a fit, happy and productive member of staff for many years to come 😁😁

  • Sorry, left out a relevant bit! As far as I am aware they cant refuse you just because you have decided to go private so providing them with proof of a private appt should be no different to a GP one (in relation to the above on basic rights). If your GP has re done your prescription (especially as he has acknowledged it has given an improvement in symptoms) he has also acknowledged you require thyroid med treatment, I am assuming you have a medical exemption card now and school should accept that as proof of need for ongoing medical treatment for a serious condition and timely appts... I advise also not over sharing details with employers ( and sadly, colleagues), if GPs dont understand the definition of optimally medicated employers definitely dont and if you tel them that GP has used that nonsense word 'normal' they are likely to take it at face value, mine did until even they could see I was so unwell ' normal' was cobblers.

  • Hypothyroidism counts as a disability if it effects your day to day life long term, which it would do if you weren't on medication to stop it, so speak to your union rep.

    However be careful how you then phase it to the head as I know schools are often run by heads who will push teachers out if they have a disability even if it is a hidden one that is managed by medication.

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