First post !

First post !

Just a little intro I forgot to do on joining last month. A friend advised me to join the forum for good advice and tips as I was at my wits end trying to find answers to my constant health problems I'm sure you are all aware of. She has helped me with information she received herself and I decided to come off levothyroxine for the first time since being diagnosed underactive. It's frightening stopping the meds I've been on for years but I did it a week and half ago and I am beginning to notice little things so I'm pleased with myself that I decided to see what will happen. For one I seem to have more energy, I don't have such a 'foggy brain' and that's a big plus for me! I hope things just settle to 'normal' as I can be, and believe this will happen now. I love reading everyone's comments and find it helps me. Wish I'd known things a lot earlier as I would've dumped levothyroxine where it belongs!

18 Replies

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  • Zion2 Welcome to the forum and I hope you find it's helpful and answers a lot of questions you might have.

    As you are hypothyroid, this usually means your thyroid has stopped working for whatever reason and no longer produces the hormone thyroxine. Your Levothyroxine (T4) is prescribed to replace that hormone. T4 is a storage hormone which converts to T3 which is the active hormone and every cell in our body needs it. You may feel OK now without your Levo but there will come a time when you will start to struggle and feel very unwell. Think about an insulin dependent diabetic, take their insulin away and they will be very ill.

    It could be that Levo is not the right medication for you. There are alternatives which may be more suitable - either a different brand of Levo, maybe Natural Dessicated Thyroid (NDT), possibly T3 alone, or a combination. Levo has a half life of 7 days and takes about 6 weeks to completely leave your body. At some point you are going to start feeling unwell through lack of thyroid hormone.

    Do you have your latest thyroid test results you can share? If you're in the UK you are legally entitled to a print out of them so just ask your surgery, post the results on the forum (include the reference ranges) and members can comment.

    Have you ever had thyroid antibodies tested to see if you have autoimmune thyroid disease?

    Have you had vitamins and minerals tested to see whether you have any deficiencies? Low levels can mean thyroid hormone can't work properly. The ones we always suggest are

    Vit D

    B12

    Folate

    Ferritin

  • Hi. Well I had my bloods done nearly two weeks ago. Anti bodies and vits all ok but I have very low ferritin levels which gp has now put me on iron tablets twice a day. Plus they found bacteria H Pylori and I'm on triple level antibiotics. T4 was 'normal' ( I don't believe the lab tested this as it's just got 'currently on T4' ) my T3 was sent to another lab for some reason my gp doesn't know he said he doubts he will get those results now. I have to have bloods done again in Feb because of the H Pylori. I came off levothyroxine because I'm on Thiroid (NDT) now. I had been on levo for 34 yrs previously. I know if I was taking no thyroid I would be in trouble and would've known it by now as it's been a week and half so I am keeping a good eye on how I'm feeling, but so far I'm doing ok. No foggy brain in the morning even seem to stay asleep longer, and I've more energy. I know having H Pylori drains your body too but the antibiotics should be dealing with that too. I'm looking forward to feeling human a bit more 😄

  • Zion2 I'm relieved to hear you're on NDT, you had me worried that you'd come off all thyroid meds completely :) . I hope you do well on it. Don't rush to increase your dose, do it gradually and you'll find your sweet spot, do it too quickly and you'll miss it!

    I've no knowledge about H Pylori so can't comment on that, but I hope that your treatment works. As you're on antibiotics, hopefully you're taking a good probiotic as well.

    You're right to not believe 'normal', you need to know the levels so always ask for a print out of your results. Your GP needs to chase those T3 results, if he's asked for a test then it is his responsibility to ensure it's done. When on NDT you need FT3 testing, it's the most important test anyway and the one that we need to keep within range at the level which suits us best.

    Is your GP on board with you taking NDT and will monitor you or are you going it alone? I have self sourced T3 to add to my prescribed Levo, my GP doesn't know and I have no intention of discussing it with her as she only doses by TSH and appears to have little knowledge of thyroid so I do my own thing, keep an eye on my levels, and avoid the hassle of GP being involved.

    I have been on thyroid meds for over 40 years, and last year I was determined to get to the bottom of why I never feel well. I did a lot of private testing and discovered all my vitamins and minerals were deficient except for B12 which was adequate. This seems to be a common theme for us hypos and all deficiencies need addressing to optimal levels, not just OK. Do you have the results for your 'OK' levels?

    With your iron tablets, are you taking 1000mg Vit C with each tablet to aid absorption and help prevent constipation? Are you taking your iron 4 hours away from your thyroid meds and any other meds and supplements as iron affects their absorption.

    I also discovered my adrenals were struggling and my sex hormones were all rock bottom - adrenal problems are quite common with long term under treated hypothyroidism. All these hormones are connected. I am now addressing everything.

  • I'm on multi vits/multi mineral tablets, omega 3 with added vit d, multi b vitamins, calcium, biotin, inulin powder and iron. I have no constipation problems. I take my ndt (1grain) in the morning and iron midday 4 hrs later. I then have the other half a grain about 3pm. I take my other vitamins after evening meal. I also have probiotic drinks. I've started having Yokebe vitamin shakes and take cider vinegar drink. My antibodies are within the limit but I didn't get my T3 results as my gp said the lab he sent to informed him they'd sent them to another lab to be done ??? I've never heard of that before. He said in other words I'm not going to get them so I can't tell you. I said so now what, he said let's finish your antibiotics then come back beginning of Feb and we will try and get bloods done again ( he basically had to lie to the lab about how long I'd been on levothyroxine as he said they will never do the checks he wants if he don't. He told me the labs think they are a law unto themselves and I've heard this so many times now.

  • Zion2 Multi Vit/Min supplements are generally a waste of time and money. They usually contain too little of anything to be of use and frequently use the cheapest/wrong form of the ingredient. It's much better to get tested and spend your money on decent supplements where deficiencies are found.

    Vit D shouldn't be supplemented unless you know you need it. Excess Vit D is stored, the body can't excrete it so it can build up to toxic level. Calcium should never be supplemented without knowing you are deficient. Vit D aids absorption of calcium from food so when taking D3 we need K2-MK7 which directs the calcium to bones and teeth where it's needed rather than it being deposited in arteries and soft tissues/organs where it can cause problems like kidney stones, calcification of arteries, etc.

    In your position, especially as your GP is having problems with the FT3 test, I would be considering getting a private fingerprick test done through Blue Horizon. Their Thyroid Plus Eleven tests all the important vitamins and minerals, both types of antibodies and all thyroid tests including FT3. That will give a full picture of everything you need.

    bluehorizonmedicals.co.uk/T...

  • With the multi vits and minerals etc, I buy from holland & Barrett and been taking them for years because I have to ? I had half my stomach removed 4 yrs ago and can't eat much food so don't get my vits and mins any other way. Consultant told me I have to take them for rest of my life to keep levels up? My gp knows what ones I'm on ? Shall I incorporate vit K2? The vit D is in the omega 3 tablets I take so not a separate vit D only.

  • Zion2 If you have to take vitamins and minerals then it's best to get tested, see what you need and buy a decent quality supplement. Is your consultant, who told you to take them for life to keep your levels up, testing to keep an eye on your levels?

    Your GP hasn't been trained in nutrition and will have no real idea of what is a decent supplement.

    Should you incorporate K2? What is your level of Vit D. How much D3 is on your omega 3 supplement.

    H & B own brand supplements are generally a waste of money. They usually contain the cheapest and least absorbable form or the wrong form of ingredients. They are made cheap to be sold cheap.

    I don't know which one you take, bit for example this one hollandandbarrett.com/shop/... contains:

    Calcium carbonate - one of the highest concentrations of elemental calcium (35-40%), but is not high in bioavailability and requires the production of extra stomach acid to be absorbed globalhealingcenter.com/nat... and are you deficient in calcium to need to supplement it?

    Ferrous Sulphate - do you need an extra 12mg iron in addition to the iron tablets prescribed? Is your GP retesting ferritin/iron panel to ensure you don't go too high which is as bad as not enough?

    Magnesium oxide - one of the worst forms, cheap and least absorbable naturalnews.com/046401_magn...

    Folic acid - synthetic and cheap form of folate, the best form is natural methylfolate.

    B12 is cyanocobalamin and we should avoid that form and only take methylcobalamin naturalnews.com/032766_cyan...

  • I took calcium myself as I was getting pain in my teeth, if that makes sense and before I came off levothyroxine?

  • You really shouldn't take calcium unless you are deficient. Unless calcium is directed to the right place ie bones and teeth, then it can end up in the arteries causing calcification, and organs and soft tissues and cause kidney stones etc.

    Vit D aids absorption of calcium from food which is why we need K2 to direct calcium to bones and teeth when taking D3. We need to make sure we don't take more calcium than we need.

  • Ok thanks for that. I will stop taking the calcium

  • I always thought h & b were the best. Can you suggest where I can go in future?

  • No, H & B own brand is to be avoided, as are cheap supermarket supplements, Boots, etc. When you check the ingredients of cheap brands you'll find a lot of the cheap ingredients that have poor absorption.

    Best place to buy is on the internet. Ask for recommendations of good brands. Some I use/have used are -

    Cytoplan

    Nutri Advanced

    Doctor's Best (some)

    Thorne

    Solgar (some)

    Swanson (some)

  • I've heard /had solgar before. I will take a look

  • I really think you should get some vitamin and mineral tests done before you spend good money on decent supplements.

    If your consultant is saying you need to take vitamins and minerals for life he needs to back that up with testing and telling you what you need. But I guess he isn't trained in nutrition either but you can ask what he thinks you should have and ask for tests. You can always out your results on here and members will comment, identify deficiencies and make suggestions for supplements and doses where necessary.

    Private testing can be done, frequently used by members is Blue Horizon, sometimes Medichecks is cheaper and they do both fingerprick tests and tests requiring a proper blood draw. Genova Diagnostics also do some tests but you need to go through ThyroidUK as your practioner for them.

  • Any patient who has had gastric surgery, are told to supplement with vitamins as we can no longer eat what we did before therefore dont get the vitamins we used to.

    They wont do my bloods for me and my GP is going to do them again in Feb and i will be asking him to do my vits as well as T3 T4 TSH etc, although i havent heard about my T3 results still as the lab had sent them to another lab for some reason. But my GP did say he dont think hes going to get them. I just cant believe the labs who do they think they are? Im a pensioner and cant afford private testing, it seems so expensive. If i was working it wouldnt be a problem.

    I will leave out the calcium, as i have done today, and will look at sourcing from the list you gave. I will have to finish the mutli vits and mins i have as they are full bottles but will sort it out in the end. Im becoming overwhelmed with the tests and tablets etc recommended to take, when for years all i did was take a levothyroxine tablet and that was it. Im on the bottle step of the ladder but will get this right. Im feeling ok so far on my 1 and half grain, next week i will up it to 2 and then keep an eye on how i feel. Im two weeks in now on NDT, so early days.

  • If our TSH is 'normal' some labs wont do others even if the GP requested. I think it is also due to financial aspects of 'unnecessary' tests, even if we the patients have symptoms.

    I'm glad you are taking NDT as I thought, like SeasideSusie you had stopped hormones altogether.

    Do you know to increase dose slightly every 2 weeks until you are at an optimum.

  • Yes I'm increasing slowly. This is 14 days in and I'm on 1 and half grains. Can't say I'm feeling great but I'm not any worse than I was. Don't feel so foggy in the morning and bit more energy but can't say anything else has changed. Still numbness in hands and in this weather I'm extra freezing. Had headache bad the other day I couldn't shift it but that seems to have gone.

  • Oh boy. I have to go check all this. The consultant who advised on multi vits and mins was the one who operated on me. Not my local GP.

    The vit d level in the omega 3 is 5ug (200 i.u). The iron the gp gave me is ferrous fumarate 210 mg twice a day.

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