T3 drama

Morning all, having a bit of a dilemma. By some miracle my private Endo prescribed me T3. He wants me to take 10mcg in the morning and 10mcg 6 hours later. The problem is the NHS GP will not provide a prescription for them and I cannot afford the private one. The GP actually said it would cost them £1600 pm.. An absolute lie. She was so smug when she said I had to go private for them. You can imagine how angry I was. I do have some from Cyprus but they are 25mcg so I cannot take the dose how the Endo is reccomending. I am currently doing 2 quarters in the morning and 1 in the afternoon. Does anyone know where I could get the 20mcg pills from? Please PM me details? Also I wanted to know effective b12 lozenges are? And if I already have 400mcg in a multi vit whether I still need them? My bloods are on a previous post (can't get to them now as don't wanna lose this post)?

Thanks all,

CBann

21 Replies

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  • CBann,

    Some CCGs insist on a recommendation from a NHS endocrinologist before GP's can prescribe T3. Your GP is exaggerating the cost which is circa £258 for 28 x 20mcg Liothyronine.

    I'm not aware of any 20mcg T3 available without a prescription. 18.75mcg (3/4 of a 25mcg tablet) is as close as you're likely to get to 20mcg.

    B12 464 is sub optimal according to PA Society which recommends around 1,000 is optimal. I would supplement 1,000mcg methylcobalamin sublingual lozenges or spray.

    ________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thanks clutter, yes I did see the price to the NHS as being £193, that may well have gone up since the article but not by £1400!! 😡I did fear that that might have been the case regarding self source T3. Have you tried the b-12 lozenges/spray? I just thought it had to be done by injection

  • CBann,

    Injections are required for B12 deficiency but other forms are fine for raising sub optimal levels. I used Boost B12 1,200mcg spray which doubled B12 level within 8 weeks. I've subsequently switched to 1,000mcg methylcobalamin sublingual lozenges.

  • Thanks again for your advise - I'll look into giving those a shot.

  • I take T3 only once daily, when I get up and it has removed all of my clinical symptoms and I feel fit and well on it. Unfortunately, like many others, T4 didn't do anything for me and I assume my body doesn't like T4.

    Unfortunately T3s from elsewhere are for 25mcg which is around 100mcg levo. I don't think it will harm you if you take a 25mcg daily dose. 5mcg is neither here nor there and you can explain to Endo.

    I wish you success on T3 but he shouldn't keep you on too low a dose.

    Just for info, this is a link which may be a bit helpful.

    web.archive.org/web/2010103...

  • Thanks shaw, I'm on T4/t3 combo at the moment. Advise was t4 75mcg and 20mcg.. Should I adjust my T4 if I take 25mcg t3?

    My Endo was quite good and has suggested the following plan-

    Step 1- 2/3weeks t4/t3 and if no good;

    Step 2 - armour - does this also cost a lot on private perscription?

    Step 3 - t3 only

    I was quite pleased he recognised the use of T3/NDT at my last visit

  • He sounds an excellent endo and if you didn't get his name from Thyroiduk.org.uk email Louise.Roberts@thyroiduk.org.uk who keeps a list of sympathetic doctors.

    Personally, I'd just take 25mcg with your levo as 5mcg is a very small increase from 20mcg T3 - it has been posted that the 'effect' of 25mcg can be between 75mcg and 100mcg of levo on different people, so I don't think it will be too much. However, your pulse should be a guide and if it goes too high or you feel very uncomfortable just reduce dose next day (3/4 tablet). Mind you I always had a fast pulse with levo and all is calm with T3.

    I'm not medically qualified but had a long road to travel with regard to finding the hormones to suit, like many of us on this forum.

    I wish you success.

    I believe Armour is the most costly but there are other NDTs cheaper and members have good results. You'd have to post a new question asking for a Private Message to be sent to you with information.

    Armour is the original NDT and I think the most expensive. Members will let you know if they've bought it.

    Many people respond well to T3 being added to T4.

  • Thanks shaw, to be honest this forum is the best resource tool for those with thyroid problems. It's amazing to have such a support network. Without it a lot of us would really be struggling - inc me! I did get my Endo off the list from Louise, and it definitely paid off. Just the crappy NHS to deal with. I've been on the t3/t4 combo for just under a week and I think I'm doing ok. Aches and pains still there a bit but reduced - maybe I do need to do some exercise as I haven't for a long while. Hair still falling out, still have fatigue at certain points in the day but very reduced and I've only just started sleeping ok since I started T3 and some slight discomfort/bloating in my tummy. But all of this is way better than t4 alone. I think I'd be alright with the 25mcg. I'll see how I go. Thanks again

  • Forget exercise till you're well, i.e. no clinical symptoms. Gentle walking at present should be sufficient. It has taken years for our gland to very gradually fail, so it takes some time to build up again.

    The addition of T3 is very helpful and some get well with the addition. That's because T3 is the only active hormone required in our receptor cells and then it's work begins and one dose lasts between one to three days.

    Exercising before on an optimum reduces our T3. T4 is inactive and its job is to convert to T3. Some don't convert T4 efficiently into T3.

    hormonerestoration.com/Thyr...

  • CBann What a horrible attitude from your GP :( They seem to delight in refusing us help and keeping us ill.

    I'm not sure but I don't think we can get 20mcg tablets through the usual sources that those of us who self medicate use, certainly not at a reasonable price. I think the extra 5mcg a day would possibly not be a big problem so I think you could continue using your 25mcg ones. If you did find it too much then you could just use the three quarters the same as now and that would be just 2.5mcg less.

    This is what I would do in your situation:

    Contact your endo and tell him exactly what your GP has said. Put the ball back in his court and ask him what to do. You could outline that your GP seems to be leaving you with the only alternative which would be to self source from a reliable source and explain that they are 25mcg tablets and ask for his guidance.

    OR

    You could tell your GP that if she won't prescribe then the only way you can follow the endo's instructions is to self source them and will she support you in that case.

    I've just reread your post and seen that your endo is private. My GP refused to support me when I saw a private doctor, wouldn't even do my blood tests, so be prepared for that.

    As for your B12, your level was 464. You need to get that up to 1000 (recommended by the Pernicious Anaemia Society) and you were advised to start with 5000mcg daily until your level is up (and then you could go onto 1000mcg daily as a maintenance dose). The 400mcg in your Multi isn't anywhere near enough to build up your level so yes, you do need the separate B12 lozenges.

  • Thanks seasidesusie, the GP really infuriates me.. They have zero compassion for how we feel. The quicker they can get you out the door the better. I am worried about fessing up to self sourcing at the moment (well to my GP) since due to fertility struggles they said they would fund 1 round of IVF once my thyroid level is stable and I really don't want to jeopardise that, just incase I need it ( trying to keep positive tho that once the thyroid is stable I will be able to conceive naturally - it's just taken so long to get this far). Thanks for the advise, I will sort out the b-12 and probably speak to my Endo and tell him I am self sourcing - I just didn't want him to think i was a cheapskate but I seriously cannot afford £230 odd a month

  • CBann I totally understand that you don't want to rock the boat because of the IVF, so maybe just see what the endo says for now. I think the 25mcg ones will be fine, maybe just a bit of tweaking but that could soon be sorted. I don't think the endo will think you are a cheapskate, they must understand financial restraints (we don't all earn as much as them!!).

    I've just seen your reply to Shaws. Armour is THE most expensive of the NDTs. There are much cheaper alternatives available without prescription which you can self source and from what people have said who use them they are just as effective, contain the same amounts of T4 and T3, the only difference would be the fillers.

    Good luck with this, and with your IVF when the time comes :)

  • I already s-thyroid in my cupboard 😁 I just worry about the pregnancy thing and being safe - if it was just me to think about I wouldn't worry as much. Oh well one step at a time. I'll talk to the Endo, going to try a slightly more sympathetic GP at the same surgery first as it wasn't my usual and he might be more sympathetic . (Banging head against a brick wall comes to mind)

  • Unfortunately the problem is the British Thyroid Association's guidelines in which they state that only levo is to be prescribed. Also that the TSH is the 'guide' as to what dose we get, whereas when we were prescribed NDT (the only thing that was available before levo/blood tests) we were given sufficient NDT until all symptoms were relieved.

    One Doctor, Dr Skinner (deceased) tried to get all of the BTA to talk about the very low doses prescribed nowadays plus the non-diagnosis due to the TSH alone and the nonsense that TSH dictates our dose which used to be between 200/400mcg. They've also made False Statements re NDT and never did reply to the following doctor (also deceased now) when he sent the following to them, despite three yearly reminders. Why do they ignore scientific evidence? What have they to gain when many patients suffer continuing illhealth and prescribed 'other' meds for the remaining symptoms? It puzzles me.

  • I think the worse thing about it, is its got to be down to money!! But I think that is so short sighted. I've lost count of the amount of times I've spoken to the GP since I've been diagnosed.. I'd been about 2/3 a year before that. It's crazy but it doesn't seem to be getting any better. I was just about to walk into a round of IVF before I got diagnosed, as a friend said due to my fatigue that I should get my thyroid tested. I really think they should of put 2 &2 together a long time ago for me. Maybe before 2 years of ttc and then a year of fertility testing. I remember going in 1 day saying I had really bad periods, mood swings, fatigue, fainting attacks and they tested me for a bladder infection. Sorry I am ranting now!!

    Anyway thanks all

  • That's what happens when we, eventually, find out we have a dysfunction of our thyroid gland.

    For me, I had 'other' diagnoses and even an 'op' to 'remove' something from my throat - when I came round I was told I didn't have anything in my throat - this was despite a Barium Swallow showing something. I asked 'what is/was it then and got no answer and on and on I went.

    Yes, we are right to be angry. Before blood tests were introduced we were diagnosed on our clinical symptoms alone but that skill has been lost by doctors and the 'modern' method is TSH alone and sometimes it doesn't rise sufficiently for a diagnosis.

    There are many stories like yours on this forum. That's why its important that we, the patient, have to read/learn in order to recover our health and I'm sure you will become pregnant. This is a link +:-

    web.archive.org/web/2010103...

    hypothyroidmom.com/

  • Thanks again shaws, that makes good reading. It amazes me how little we can rely on GP's for anything useful these days. the thing that is distressing me at the moment is my hair falling out. I thought the T3 would stop this, do you have any ideas of what I can do?

  • The problem for us is that doctors aren't trained they way they were before the introduction of blood tests. Previously they used their skills and recognised the clinical symptoms - now they don't appear to know one and also some patients' TSH doesn't rise high enough. In the UK the 'powers' say not to medicate until it reaches 10 - yet in other countries they prescribe around 3.

    I think your Endo will realise why you have to outsource. After all, we have a life-long serious condition if not medicated.

  • I have read Dr Peatfields book and yeah it is really disappointing GP's don't consider symptoms. TSH in range then you have to deal with the rest.

  • Hi - just wanted to say that my endo told me that I would have to get off the T4/T3 therapy for a month before IVF and go on T4 only as it's not safe to take T3 while pregnant. I'm thinking about IVF too but want to get health back on track first. I seem to have a problem converting so started the T3. If I can get back to 'normal' I will proceed by switching back to T4 only a month before IVF. Don't know how that will work.....

  • Hi Bluemaxx, I think that is another controversial subject - I had the same conversation with my Endo and he said he would do some further investigations on the subject but he had never taken anyone on the combo through pregnancy. He admitted that they don't know enough about it therefore preference is to take you back on to T4. my view, for what it's worth and I have done a bit of research online on "t3 and pregnancy" is that if something makes you feel better, why would you take it away during such a crucial time. Why wouldn't a baby need T3 too. It could be worth getting a second opinion.

    all the very best of luck, this is the hardest emotional roller coaster I have ever been through.

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