Stopping levothyroxine

I am a new member and looking to stop my levothyroxine because whatever I take does not change how I feel. Diagnosed in 2014 with underactive. Se thyroid peroxidase antibody conc. 604.5 (<34) dose 175mcg levothyroxine but have symptoms of cold hands/feet, tiredness, puffy eyes, weight gain, losing hair, muscle cramps, pins and needles in feet. Thank you.

TSH 2.66 (0.2 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

18 Replies

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  • I am sorry you feel so bad ZaraC but you cannot stop levothyroxine until you find some other replacement.

    If we do not take replacement hormones - either levothyroxine, natural dessicated thyroid hormones or T3 added to T4, or T3 only we will die slowly as our body cannot function without thyroid hormone replacements.

    At present you aren't on sufficient as your TSH is nearly 3 when it should be 1 or below. Your FT4 and FT3 are low and should be towards the upper part of the range, not below (FT3 should be nearer 6 than 3. It could be you aren't a good converter of T4 to T3.

    Levothyroxine is T4 only. It is inactive and has to convert to T3. T3 (liothyronine) is the only active thyroid hormone required in the billion T3 receptor cells.

    You must also have checked - everything has to be at optimum - B12, Vit D, iron, ferritin and folate. Antibodies can be reduced by going gluten-free and help prevent the antibodies attacking your gland.

    All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water. Allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards.

    Get a print-out of your results with the ranges and post for comments.

    We can get well but we have to do it ourselves by reading, learning and asking questions.

  • I lost my login sorry

    Ferritin 7 (15 - 150)

    Folate 1.8 (2.5 - 19.5)

    Vitamin B12 101 (190 - 900)

    Vitamin D total 24.3 (<25 severe)

  • That very low everything. Need supplementation.

  • You are under-medicated, that's why it doesn't change how you feel. It's not just taking it, that counts, it's taking enough of it.

    Your TSH is much too high, when on thyroid hormone replacement, it should be one or under. And, your FT3 is way too low - most people need it up the top of the range to feel well. How much are you taking?

    I don't really think you've ever learnt about your disease, have you? There's so much you need to know. Are those all the labs you've had done? No antibodies or nutrients? They're all important, too. It's not just about hormones. :)

  • I lost my login sorry

    Se thyroid peroxidase antibody conc. 604.5 (<34)

    Ferritin 7 (15 - 150)

    Folate 1.8 (2.5 - 19.5)

    Vitamin B12 101 (190 - 900)

    Vitamin D total 24.3 (<25 severe)

  • So, you do have Hashi's, therefore you need your TSH suppressed. And your nutrients are absolutely dire. Best reply to SeasideSusie with those results, and she will explain what to do about them. But, they're all under-range, so what does your doctor say about them? It really isn't any wonder that you feel so ill. But, believe it or not, stopping your levo is going to make you worse, not better.

  • ZaraC1 I think you get the prize for worst ever set of results!

    I am assuming your GP has done nothing about them and nothing has been prescribed, my reply is based on that. If you have had something prescribed then please say what and we can see if it is sufficient.

    **

    Ferritin 7 (15 - 150)

    I'm hoping you've had an iron panel, full blood count and haemoglobin test to see if you have iron deficiency anaemia. If not, make an urgent appointment with your GP and ask for them to be done.

    I will give you information about iron deficiency anaemia as I suspect you do have it.

    NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines)

    cks.nice.org.uk/anaemia-iro...

    Have a read through but this is the treatment:

    How should I treat iron deficiency anaemia?

    •Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

    •Treat with oral ferrous sulphate 200 mg tablets two or three times a day. ◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

    ◦Do not wait for investigations to be carried out before prescribing iron supplements.

    •If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

    • Monitor the person to ensure that there is an adequate response to iron treatment.

    So you should be given tablets for this, Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

    Due to your low ferritin you really need an iron infusion which will raise your ferritin within 24-48 hours, tablets will take months. So ask your GP for one and fight for it!

    The recommended level for ferritin is half way through it's range, and it needs to be an absolute minimum for thyroid hormone to work properly.

    **

    Folate 1.8 (2.5 - 19.5)

    Vitamin B12 101 (190 - 900)

    Check for signs of B12 deficiency here b12deficiency.info/signs-an...

    You are folate deficient with below range B12. Please go over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice. Post these results, your ferritin result (and iron information if you have any), and any signs of deficiency. I think you will probably need testing for Pernicious Anaemia, I'm pretty sure you'll need B12 injections. See what they say and hot foot it to your GP and demand some action!

    I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

    "In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

    And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

    "We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    That's good enough for me and I keep mine around 1000.

    **

    Vitamin D total 24.3 (<25 severe)

    You can see you are severely deficient. NICE treatment summary for Vit D deficiency:

    cks.nice.org.uk/vitamin-d-d...

    Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

    For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

    Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and demand that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount to bring your level up to what's recommended by the Vit D Council which is 100-150nmol/L, and then you'll need a sensible maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

    There are important cofactors needed when taking D3

    vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

    Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

    naturalnews.com/046401_magn...

    Check out the other cofactors too.

    **

    If your GP has seen these results and ignored them, I suggest you take someone to the surgery with you when you go to discuss them, someone who is assertive if you are not. Doctors are more likely to be helpful if there is a witness there.

    And if he has ignored these results please give very serious consideration to reporting him for negligence. Goodness know how much more unwell you would have become had you not been told of these deficiencies, and I dread to think how many people this GP is keeping sick. He may even end up killing someone by neglect one day.

    You may wish to see a different GP in the surgery, and you may wish to change your GP.

    **

    Se thyroid peroxidase antibody conc. 604.5 (<34)

    I commented on these in my earlier post, which is below.

    **

    Please come back and let us know how you get on.

  • I concur completely w/this advice.

  • SeasideSusie, what a great reply and layout....very good advice and explanation. ❤️❤️❤️

  • ZaraC My sympathy to you . greygoose is so very right that thyroid patients need to educate themselves with symptoms both hypo and hyper . And to learn about thyroid meds and how it helps us . I had TT many years ago and was totally depended on what Dr's told me . BIG MISTAKE . I never even thought of questioning their ways of dosing me knowingly that I was having palpitations for starters . When I would ask the Dr about palpitations he would tell me to skip the next days dose and reassured me that my TSH and FT4 where fine . I was on T4 only and many more and new symptoms would pile on . Weight gain , panic attack , insomnia , muscle cramping, jaundice , anxiety , lower back pain later to only learn that it was adrenal insufficiency paying the price of not being adequately dosed . Adrenals and thyroids work in unison. When patients are not sufficiently dosed adrenals pick up the slack . In my case that I'm a TT patient being dosed on very high T4 for suppression purposes and not being a good converter . Our thyroids make both T3 and T4 . I was missing T3 . Joining thyroid forums as this great one helped a lot . I'm very grateful . Nutrients are very important with our thyroid meds to work for us more efficiently . Vit"D" Selenium , B-12/folate , Iron if needed it . Magnesium , Vit"C" and B-5 for adrenals . The T4 that I was on I learned later had fillers that didn't agree with me nor the dyes . I now dose with dye free T4 and less and different fillers . I was also added some low dose NDT for the T3 mix . Prior to dosing with NDT I tried synthetic T3 but caused me surges . NDT is much smoother delivery of T3 for me . Thou many do very well on synthetic T3 with T4 or just T3 and even NDT only and some do very well with T4 only if they are great converters which I'm not . I learned to trust my body . I journal my symptoms they are very telling . Symptoms are cellular results and labs are serum and it fluctuate . I journal my blood pressure pulse, anxiety , brain fog , skin cracked dry heels , skin out breaks , stomach issues , constipation , hair falling out more than usual . I learned to tune in . Trust me it will help you to identify hypo /hyper symptoms .Labs have a place too if your FT4 or FT3 need to be tweaked .Go slow and low when changing doses up or down give your body enough time to acclimate to new changes .Always ask for a copy of your labs and write on it your dose that you where on at the time of labs . So you have what to compare to in the future . Keep them in sheet protectors . Read as much as you can to familiarize yourself with thyroid issues . Exchange thoughts and concerns you have with this great forum . Everyone is so nice and very helpful caring and sharing .

    Best wishes for finding your optimal real soon .

  • ZaraC Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.

    The antibody attacks cause fluctuations in symptoms and test results.

    You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

    Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

    Gluten/thyroid connection: chriskresser.com/the-gluten...

    It's very common to have gut/absorption problems with Hashi's so this could prevent your Levo from working properly and can also cause low level of nutrients. Best get the vitamins and minerals tested that Shaws has mentioned, then post the results on the forum for commen and suggestions to supplement any where necessary.

  • Zara has now posted her DIRE results above :-) OMG

  • Oh lordy, lordy, most likely the worst I've seen :(

  • Think you should start a Forum for low vits and minerals and we can refer them all on :-) !!!

    When will Docs wake up to this dreadful situation. Time to bring back school dinners - liver once a week ! - and start teaching pupils about Nutrition as Domestic Science or Home Economics. It was the former in my day. Maybe call them something like - How to Save Your Life - classes or any other dramatic name.

    I think this Forum is a good example of how important nutrition is as everyone having problems seems low/deficient.

    Keep up the good work !

  • I think the GP should be reprimanded - no wonder she feels awful and struggling with why she feels so bad.

  • Try brand name Synthroid. My ending says she can't get stable results w/levothyroxine or find a natural practitioner willing to try Armor thyroid. Good luck!

  • Synthroid is just a brand name for a levothyroxine product with a very big advertising budget.

  • Synthroid has BIG PHARMA in the pocket .It's called follow the MONEY ....

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