LEVOTHYROXINE not working

Hi

I'm new here, I hope you can help me.

I have had been diagnosed with chronic fatigue after many years of going to my GP with multiple unexplained symptoms including extreme fatigue, very dry skin, dry eyes, head and body hair loss, brittle nails, slow gastric emptying, dysphagia, constipation, joint and muscle pains to name but a few. I have been to several specialist and had numerous blood tests all to no avail. My thyroid function came back at borderline normal, TSH- 5, T4 - 11.2, T3 - 3.9. My GP very kindly prescribed a trial course 50mg levothyroxine but I am afraid it has had no effect, if anything I feel slightly worse with increasing muscle fatigue and aching joints. I think I may benefit from a small addition of T3. Where can it be purchased from? My GP will not consider prescribing it to me and I am afraid all medical help has now been exhausted. Help!

9 Replies

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  • Have you got the ranges to go with those tests please?

    How long have you been on 50mcg? Do you take your levo with only water, on an empty stomach, 30 mins to 1 hour before food?

    Louise

  • Welcome to the forum, LadyAnne,

    Your thyroid levels should be retested 6-8 weeks after starting Levothyroxine to see how well you are responding to 50mcg. Post the results and ranges (figures in brackets after results) in a new question for advice.

    As well as the information Louise requested please post the results and ranges for ferritin, vitamin D, B12 and folate if they have been tested.

  • Do you know if you also have had your thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO and high TG, but negative TPO and raised TG is possible, though much rarer.

    If you have Hashimoto's then gut symptoms are common. Can be low stomach acid, or gluten intolerance. Many find adopting 100% gluten free diet can really help reduce symptoms. Get GP to test for coeliac first.

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests both antibodies and vit D, folate, ferritin and B12

    This is a finger prick test you do at home, post back and they email results to you couple of days later. Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

  • You may very well end up finding that you benefit from T3, in addition to T4. However, you have not been on thyroid hormone replacement for that long, and 50 mcg a day is a starting dose for most, not a maintenance dose. Like others have suggested, do you have new labs to post here, to see what your levels look like on your current dose of levo?

  • Do you and your doctor know that 50 mcg is just a starter dose, and it's supposed to be increased by 25 mcg every six weeks until you feel better?

    It's not surprising that you don't feel better on 50 mcg, it's much too low. But, with hormones, you have to start low and increase slowly. Unfortunately, some doctors don't seem to know that. A few increases in dose will probably be all you need, and you won't have to go to the bother or sourcing T3. :)

  • Thankyou everybody for your replies. I have a very long medical history, so bear with me.

    Over the last 10 years I have been tested for various ailments including Lyme disease, hypothyroidism, autoimmune diseases and everything else in between. I've had colonoscopies, endoscopes, scans, X-rays and ultrasounds. Nobody has been able to explain why I feel so awful most of the time.

    DOB 1953

    2003 - TSH 4.8 miu/LL (0.3 - 6.0 miu/L)

    Cholesterol 5.7 mmol/L Serum triglyceride 1.98mmol/L (0.3 - 1.7mmol/L)

    2004 - TSH 2.71miu/L (0.3 - 6.0miu/L)

    2007 - TSH 4.79miu/L (0.3 - 6.0mui/L) FT4 12.7pmol/L (9 - 26pmol/L)

    FT3 3.7pmol/L (2.5 - 5.5 pool/L)

    2008 - TSH 4..26miu/L (03. - 6.0miu/L) Ferritin 40ug/L (10 - 2990ug/L)

    50 micro grams Levothyroxine prescribed rising over 6 months to 100 micrograms

    2009 - TSH 0.37miu/L (0.3 - 6.0 miu/L) FT4 13.9pmol/L (9-26pmol/L)

    I felt very ill and shaky so Thyroxine was discontinued

    Jan 2010 - TSH 10.6miu/L (0.3- 6.0 miu/L) FT4 11pmol/L (9 - 26pmol/L)

    Cholesterol 6.4 mmol/L triglyceride 2.28 mmol/L (huge increase!)

    Thyroid peroxidase antibody - normal

    Thyroxine 75 micrograms restarted

    April 2010 - TSH 1.26miu/L (0.3 - 6.0miu/L) FT4 13pmol/L (9 - 26 pool/L)

    Had another bad reaction to Thyroxine - aching muscles, migraines palpitations, digestive upsets - discontinued

    Aug 2010 - TSH 5.31miu/L (0.4 - 6.0miu/L)

    B12 291ng/L (170 - 730ng/L), serum folate 5.3ug/L (4 - 19ug/L)

    2011 - TSH 3.47miu/L (0.3 - 5.0miu/L)* lower upper range*, B12 220ng/L (170 - 730ng/L)

    B12 injection prescribed with a slight improvement to symptoms

    2012 - TSH - 8.41mui/L (0.3 - 5miu/L) FT4 11.6 pool/L (11 - 23pmol/L)

    July 2012 TSH 2.94 miu/L Nov 2012 TSH 3.42miu/L (0.3 - 5.0miu/L)

    B12 394ng/L

    2013 - TSH 3.08 miu/L (0.3 - 5.0miu/L)

    serum ferritin 54 ug/L ( 10 - 290ug/L)

    2014 - TSH 2.64mui/L (0.3 - 5.0miu/L) ESR 18mm/h (2.0- 10mm/h)

    2015 - TSH 5.79miu/L (0.27 - 4.2miu/L) *different lab* FT4 11.2pmol/L

    (12 - 22.0pmol/L) FT3 3.9 pmol/L ( 3.1 - 6.8pmol/L)

    Serum ferritin 21ug/L (10 - 290ug/L) - prescribed iron

    50 micrograms Levothyroxine restarted yet again as symptoms point to hypothyroidism

    May 2016 - TSH 6.325miu/L (0.34 - 5.6miu/L) FT4 11.1pmol/L (8.0 - 18pmol/L) Serum ferritin 38 ug/L Vit D 48.9

    Sept 2016 - TSH 2.753miu/L (0.34 - 5.6miu/L) FT4 12.0 (8.0 - 18pmolL)

    Serum Ferritin 54 ug/L Vit D 42.9 (down even though taking supplements)

    Doctor thought that my TSH and T4 were well controlled and within range and refused to increase Thyroxine ( maybe because it has made me ill in the past so he is walking a tightrope really)

    Meanwhile my fatigue , aches and pains, dry skin etc are just getting worse

    Sorry for the length of this post but my medical history is quite chequered.

    Any help will be gratefully received

  • It looks as though you've been hypo from the first result onwards. If you have positive antibodies, which is likely - every so often your thyroid dumps extra hormone into your blood stream and you get hyper-type symtpoms for a short time. If your ferritin, floate, B12 and D3 are not optimum, you won't be able to use thyroxine/levo and that can make you feel ill. You really do need a dose increase, but it could be the fillers in the tablets that are a problem - you try taking an antihistamine before the levo and see if it helps.

    Your symptoms all point to undermedication. As your vitamin levels seem to be dropping even with supplementation, it would be worth trying digestive enzymes and HCL with meals (and being tested for gut problems, eg coeliac, bacterial overgrowth).

    Most people need TSH under 1 so that FT4 and Ft3 are in the top quarter of their ranges (at least 15.5 for FT4) - your FT4 is not even middle of the range so your Ft3 is probably even worse. No wonder you feel bad!

  • Thankyou for your reply

    I hadn't considered I might be allergic to the fillers in the Levothyroxine, I will certainly look into that. I am going to get up to date blood tests for folate, B12, ferritin and D3 next week. I'll will try to get those up to optimum levels and then see how I feel then. It very difficult to maintain my ferritin levels in particular. The doctor doesn't seem too worried though

    I drink kefir every day and I am careful not to overload with sugar. My diet is quite sparse as I tend to pile on weight very easily so I am extremely careful. I'll try digestive enzymes and HCL and hopefully they will help

    It is so good to get advice from people who are going through similar health problems. Thanks for your advise

  • When you find a brand of Levo you are happy with then request that dose. The pharmacy should put it in your notes but if not ask your doctor to put it in your prescription. Try to take it at the same time each day as well. I try to keep as many things static if I can then if something goes wrong it's easier to work out what could be doing it.

    Do t. E too frugal with your diet. If your body feels it's not getting enough then it hangs on to all it can. Also Vit D is one of the things we are often low in and need to be higher to help the thyroid but it is fat soluble so we can't go without taking some fat to belt that. It does take time with all the testing etc but it's nothing's we can speed up so patience is needed.

    It might. E an idea to keep a diary to keep tabs of any changes you made and your results as you go along plus in the early weeks your diet and mark down if you change things as well. Hope you soon are feeling better.

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