Introducing t3 ... confused

Hi All

I feel so frustrated and confused. The more I read the more confused I seem to feel.

I was diagnosed hypothyroid 30 years ago and ceoliac 18 years ago. I was on 150mg for 25 years, still with symptoms. 5 years ago they reduced me to 125mgs and won't put it back up. Since symptoms have been worse, particularly my weight, brain fog depression and fatigue. In my teens, twenties and early thirties I had crippling issues with my female hormones / pms with appauling depression and mood swings. So bad that I had a hysterectomy at 33 without having had children.

After seeing the 'trust me I'm a doctor' programme I realised there was more than just levo. I found a bodybuilders website and ordered some t3 , before finding this forum. The tablets finally arrived a week ago but were 50mg tablets as opposed to the useual 25mg. I have since ordered some from a website recommended from helpful people on here, just waiting for them to arrive.

I was so keen to start feeling better and loose some weight I foolishly ignored the regularly stated advice on here to start low and slow. And started on 1/4 of a tablet twice a day = 2 lots of approx 12.5mg. Within 3 days I started to feel quite strange. So have dropped down to one small 1/4 in the morning with my levo. I know its early days, but I'm still feeling worse than before I started. More depressed more tired etc. When I was on the higher dose I definitely had a couple of cortisol crashes. So I'm wondering if I have a problem with my adrenals ? Also had a few 'liver flutters' after taking t3. I've read the liver plays a big part in t3 & rt3. But have had a liver scan and it was fine.

I am waiting on blood results from the doctor ( from before taking t3 ) but the test was only t4, they wouldn't test t3. I am currently on the sick with depression and anxiety so currently can't afford the necessary private bloods.

I eat a healthy gluten free diet. Take vit b & d supplements, eat brazil's for selenium. Also on sertraline for depression.

Any advice / your experiences greatly appreciated. I just feel soo confused and upset as I was hoping introducing t3 would be life changing for the better.

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31 Replies

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  • Kitti1,

    What were your TSH and FT4 results and ranges?

  • Hi Clutter

    I'm waiting on my most recent test results. That were taken a few days before starting t3. Previous results I haven't been given details of. So sorry can't help with that at the mo.

  • Kitti1,

    Write a new post when you have the results and ranges. Members can't advise without them. It's possible the T3 is over medicating you and that will make you feel very unwell.

    Perhaps you could order a private FT3 test too via thyroiduk.org.uk/tuk/testin...

  • I've just phoned the surgery and got my results.

    TSH 5.9. range 0.35 - 5.5

    T4 13.4 range 10 - 20

    Advice appreciated

  • Kitti1,

    You are under medicated to have TSH over range and that's why you have been gaining weight. If you ask your GP to increase Levothyroxine dose until TSH is 1.0 or lower you may not need to take T3.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    If you prefer to continue taking T3 without increasing Levothyroxine dose try 6.2mcg daily (a quarter of 25mcg tablet) for a week or two and when comfortable add a second 6.25mcg dose. You could possibly increase to 18.75mcg daily but you should have a FT3 test 6-8 weeks after increasing to 18.75mcg before increasing further.

  • Kitti1 My advice - dispose (safely) of those T3 tablets you got from the body building site. You don't know if they are genuine and 50mcg tablets are not what are available from the reliable, recommended sites members use. T3 from bodybuilding sites have been known to be fake and made people very ill.

    Those results indicate under medicated with Levo.

    There's no way of knowing if your conversion is poor and whether you need to add T3 unless you get FT3 tested at the same time as FT4. You should get a test done with Blue Horizon or Medichecks.

    Brazil nuts won't provide any selenium unless the packet says they are grown in selenium rich soil. The only sure way to know what you're getting is to buy a decent selenium L-selenomethionine supplement.

    It would help timber all recommended vitamins and minerals tested ie

    Vit D

    B12

    Folate

    Ferritin

    These all need to be optimal for thyroid hormone to work properly. These tests can be done as part of a thyroid bundle with either Blue Horizon or Medichecks.

    As you are supplementing with Vit D, what was your level when tested and how much are you taking? Are you taking it's important cofactors K2-MK7 and magnesium?

    It's worth checking to see if setraline has any effect on Levo.

  • Thank you Clutter & Seaside Susie for all the advice.

    I've stopped taking the t3 as after a week of it I feel ( under the duvet ) depressed and exhausted. I did read lots of reviews of the site and its meds on numerous forums. But have decided to ditch it. After finding this forum and the original order not materialising for weeks, I did order from a site recommended by members on here. Although over a week after dispatch that hasn't yet arrived.

    I have asked my doctor in the past if my levo dose needed to go up but been told my levels were fine and there was no need to change my dose. I've been to register with a new doc today as I think I'll be banging my head against a brick wall with my current gp.

    Re the blood tests, I guess I'm going to have to try and save up and get one done. As I'd been told my levo levels were fine, before getting them off the receptionist yesterday and being horrified at my tah level. I was hoping to be able to add t3 slowly and judge from how I felt. But I think your right and I need a proper check. Although I am guessing I may need a little t3 as even when I was on the 150mg of levo I wasn't symptom free. Just desperate to be well 😔

  • Kitti1

    "I did order from a site recommended by members on here. Although over a week after dispatch that hasn't yet arrived."

    If this is the Greek supplier of Unipharma then mine were despatched on 29th March by express mail and the track and trace shows it was at Heathrow on 3rd April, nothing else showing yet.

    My previous order took between 2-3 weeks.

    A few weeks ago I ordered something else from Greece (nothing to do with this supplier), two small parcels were sent on the same day by the same person. One arrived in less than a week, the other took 3 weeks. It's either Border Control/Customs or Royal Mail that delays them. Hopefully we'll both get our delivery within the next few days.

  • Thank you that is reassuring as mine is a Greek supplier despatched on the 29th by express mail. So fingers crossed for us both ☺

  • Kitti1 I think it is the same supplier. They should have given you the tracking number in the email when they confirmed despatch. Copy and past the whole number and put it in here

    m.royalmail.com/h5/track_item

    It should tell you where your parcel is at the moment.

  • Hi Seaside Susie

    Sorry for the late reply. Thanks for the link. Unfortunately still no info or parcel. How about you ?

  • Kitti1 Did you put your tracking number into that Track and Trace link? What is it telling you?

    There are two of us, that we know of (you make 3), that had our orders despatched on 29th March, Track and Trace is showing our parcels arrived at Heathrow on 3rd April, no other information showing and neither of us have received our order.

    I've rung Heathrow Distribution Centre and they tell me that mail is scanned twice, once when it arrives at Heathrow and again when it arrives at the local delivery office. As I understand it, Royal Mail itself (even though Heathrow DC is part of Royal Mail) don't get involved until it gets into their domestic mail network so can't apparently do anything.

    I was told there could be many reasons for the delay and to wait a bit longer. If it doesn't show a second scan to say it's with the local delivery office then I assume it's stuck at Heathrow, maybe this batch of mail has been misplaced somehow. If yours says that it arrived at Heathrow at 12.20 then they've arrived together and are probably still there somewhere. I doubt they'll still be in a mail bag as they've been scanned, but it does seem strange that at least three parcels all the same (probably bubble type envelopes) have disappeared. I wonder if any other members are waiting and we don't know about them.

    At the moment it's been two and a half weeks. I'm going to allow 3 weeks (as it took that long last time) plus a couple of extra days because of Easter, then if still no sign by 21st April I will contact the supplier. I don't know what they do in these circumstances but I'm guessing that as they paid for the tracking service they have to initiate any investigation into any problems rather than us this end. Hopefully they will resend rather than wait for any investigation as I will have run out by then and I know the other member has already run out.

    If you want to ring Heathrow Distribution Centre the number is 0843 504 7203 and you choose the option for international mail, if I remember correctly.

    Do let me know of any further development, by PM if you'd rather, or on here, I don't mind.

  • Hi Seaside Susie

    Thanks for the message. Yep mine arrived at Heathrow at 12.20 on the 3rd also. I'll give Heathrow a ring tomorrow and see if I can get anywhere with them Thanks for the number, very helpful. I did email the supplier on the 6th so they are aware I haven't received my parcel.

    If your last parcel took around 3 weeks let's cross our fingers for some action this week. 👍

  • Kitti1 So it looks as though whatever came in on that flight, in that mail bag, has been mislaid somewhere :(

    Did the supplier reply when you emailed on the 6th?

  • Hopefully its just a backlog ? They did reply saying their tracking showed it arrived in the UK on the 3rd. And also said Royal Mail don't display any information most of the time lol ! I said I would message them when it arrived. Which obviously I have not. Surely someone at Heathrow should be answerable. Otherwise there is no point to a tracking service. Just a little worried they might have stopped them because they were tablets ?

  • Kitti1 There's no problem with receiving tablets:

    I believe it is the UK Medicines Act which says:

    Quote

    "It is illegal to buy prescription-only drugs without a prescription or consultation in the UK, whether on or offline.

    **This law currently does not apply to websites based abroad as long as you're buying for personal use.**

    The same rule applies if you were to bring them through airport customs here......

    ........ It is legal to import non-prescription drugs provided you are not selling them on without the appropriate licences."

    Unquote

    So it is fine to buy them from this supplier and have them sent from Greece.

    My worry is that because the tracking is showing that they have arrived in the UK, then the supplier now can say their job is done. I don't think (but I don't know for sure) that we can instigate an investigation with Royal Mail as to their whereabouts as we didn't send them (we didn't purchase the mail service originally). Whether the supplier is willing to do this I'm not sure.

    I will give it a few more days for the postal service to get back to normal after Easter and then if no sign by the 21st I will email the supplier to see what happens now. I dare say this isn't the first time it's happened.

  • Could I ask to be sent a message with the name of the place in Greece I can order T4 and T3 from? Site I use to use is no longer in operation. Also was a Greek supplier but mainly dealt in bodybuilding products. There is also a lab in the UK that can test medications for what they really contain.

  • Matt8394Alien If you post a new thread with your request, and include your latest thyroid test results and Levo dose, members are more like to share their sources and offer guidance on dosing.

    You probably realise from these posts that there is a problem that at least 3 of us are experiencing with receiving our supply at the moment, and until that is resolved satisfactorily I don't feel inclined to recommend the supplier. I am worried that I have wasted a lot of my own money, I don't want to be responsible for wasting anyone elses.

  • I concur. I'll email the supplier again this week also.

  • Hi. I've just spoken to royal mail on the number you gave me. Apparently you can't speak to Heathrow directly.

    One of the first questions she asked was what is in the parcel. I said it was tablets four personal medical use. She asked if theory were prescription our prohibited and I said no, as they don't need a prescription in Greece. She said they were probably being investigated by customs and this is what is causing the delay.

    There is a 20 day limit to this delay / delivery time. And she advised me initially to contact the supplier after 20 days after their dispatch date to notify them that I hadn't received the product ordered. Then suggested I phoned them again on Saturday ( opening times 8-1 ) if I hadn't received my package by then.

    So let's hope we receive them before Saturday

  • Kitti1 I put a new thread up this morning so all affected would hopefully see it, my delivery arrived this morning so they have been released and they're on the way.

    My Track and Trace is still showing the one scan when it arrived at Heathrow, it's not showing the scan that is supposed to tell you it's arrived at the local delivery office.

    Hopefully you will get yours in a day or two.

  • Hi SeasideSusie Kitti1

    I hope Kitti your package has arrived by now too. I'm wondering, after reading your conversation on here, if this is a problem in the pipeline - not that we need any more to be worrying about right now. But in trying to figure out the reasoning behind this proposal to remove t3, (I don't believe it is just because of the price hike, you have probably already seen posts were I've voiced my concerns at this being somewhat 'orchestrated' as it plays straight into the hands of NHS (in crisis).

    The supplements I have been taking for years, alongside t3, to boost thyroid and adrenals, have also had problems getting into the country. The shipment was turned back, due to tighter legislation or something. So what are they turning it back for? Is it the medication has changed or the import rules?

    Are they checking all medicine entering the country - lets face it, they will get records of where it is coming from...so protecting sources may become irrelevant.

    I wonder if there are not bigger moves afoot to block individuals from buying any t3 or NDT, perhaps any medication, from abroad too? Are they going to start targeting all medicines coming into the country, outside of the NHS umbrella? That way the NHS has more control?

    I know this is very pessimistic view but I can't shake this gut feeling that we have a bigger problem than we already think we have. And that because of it we have to be drumming up momentum to deal with it and fast, before things happen behind everyone's back.

    This 'proposal' has already stopped new patients getting t3 (How is that a proposal) I'm wondering-knowing that they are likely tightening up at import, at what else is being slid in behind the closed door?

  • Could this be a result of Brexit? One would assume that UK would want to tighten the borders since its leaving the EU. I wouldn't mind tighter control if we could get our free prescriptions on the NHS.

  • I don't know UrsaP . The mind boggles. Apparently we have been able to import these medications because of "a loophole in the law". Maybe plans are afoot to close this loophole. Who knows.

    One thing that I find concerning is how freely the supply of T3 and NDT is discussed on here. This forum is not moderated in any way. Plus, the original posters don't always lock their threads to 'community only' (this one isn't locked) so they are easily found on search engines which just may have pointed people who want to shut down supplies in this direction. They could then join as a new member posing as someone who wants to try T3 and asks for details and, as I mentioned in another post the other day, there were a few members last year who were happily sending details out willy nilly to any new Tom, Dick or Harry without asking them to share their background or thyroid journey.

    I'm not saying that we shouldn't help out, of course we should, but I think that more caution could be applied if the person's first and only post is to ask for supplier details. If people are willing to tell us more about their thyroid story then we might have more faith that they are genuine.

    I have had a few people PM me out of the blue for supplier details. I check out their profile and if I see that they are new and haven't made any posts then I don't respond.

    It's very worrying. Even if T3 does miraculously become more easily available on prescription here at some point, there's no way I would get it (and I'm guessing a great many other members too). My GP is TSH obsessed and unwilling to discuss anything beyond that. I have only managed to keep my current prescribed Levo dose because they don't give a sh1te about their patients and haven't noticed that I'm three years overdue for a thyroid re-test. And as I know what the endos are like at the two hospitals used in our Health Authority area, then I know what the outcome would be there too. I won't put myself through the endo experience again that I had to endure 15 years ago. I am happy to monitor myself and do so sensibly.

    I honestly believe that there are some hypothyroid doctors (or their spouses) who don't do well on Levo alone. And I believe that these doctors are medicating with something else, either T3, T3 added to their Levo, or NDT, and I expect they are getting it through the NHS. I don't believe they are being left to suffer like we are. And I also believe these doctors won't stand up and be counted so the majority of us have no hope of being treated as we need to be by the NHS.

    I'm afraid I'm beginning to despair ... or maybe I'm just having a bad day :(

  • SeasideSusie,

    Apparently we have been able to import these medications because of "a loophole in the law".

    Are you sure about this?

    I thought the 'loophole in the law' thing is to do with obtaining doctor issued prescriptions via the internet or phone without a face to face consultation. It's a service offered by some pharmacies who have an in-house doctor to do the consult (which might only be a form to fill in). The pharmacy will then supply you with the medicine this in-house doctor prescribes.

    I'm fairly sure it's not a loophole that allows us to buy small quantities of non-controlled medicines for personal use, without prescription, from outside the UK.

  • RedApple Maybe I worded it wrong, I was trying to remember rather than look at my saved information.

    From a website where you can ask questions about UK Law (don't have web address, I just saved this)

    Q: What is the UK law regarding importing prescription medication.

    A: It is illegal to buy prescription-only drugs without a prescription or consultation in the UK, whether on or offline. This law currently does not apply to websites based abroad as long as you're buying for personal use. The same rule applies if you were to bring them through airport customs here.

    There is currently a loophole in UK in the Medicines Act 1968 which means that although many drugs can be dispensed only after a patient has consulted a doctor, the consultation need not be face-to-face. Therefore quick online consultations with net doctors make such dodgy transactions legal.

    Therefore, in response to your question, it is legal to import non-prescription drugs provided you are not selling them on without the appropriate licences.

  • That seems to confirm my comment above. The loophole pertains to the 'net doctors' thing, not the purchase of meds from outside the UK.

  • Indeed it does, like I said I was trying to remember saved information rather than look it up.

  • SeasideSusie,

    This forum is not moderated in any way. Plus, the original posters don't always lock their threads to 'community only'.

    Admins do the best they can, given that we have no control over who joins the forum, membership is anonymous and we have no facility to pre-moderate posts before they become public.

    If you see a post that you think should be locked to community, feel free to use the report button to ask an admin to lock it.

  • RedApple It wasn't a criticism in any way, shape or form of Admin and the job they do. I was merely pointing out that caution is needed because this isn't a moderated forum.

  • And of course this is why we absolutely do not allow the supplier info to be posted on forum. At least we have some control over that :)

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