Why has Levo stopped working?

This is my first post. I am 59. After many years of undiagnosed Thyroid related illness, I was finally diagnosed with Hashimotos in 2015. My father had the same late diagnosis. He died just five years older than I am now, aged 64 of a massive Stroke. At the end he was morbidly obese, with very high blood pressure. He had all of the usual thyroid symptoms. He also had significant hearing and sight loss. I have two younger sisters. They were both diagnosed around 15 years ago, one with Hyper and the other with Hypo. They have never been given an Antibodies test. I had been tested a number of times over the years, but my bloods always came back as 'normal'.

I was finally found to have Hashi's following a collapse at a hospital. I had gone to be with my son, who was having an operation. I suddenly became very dizzy, was profusely sweating, had violent vomiting and then fainted. I was taken to A&E, where they found that my body temperature had drastically dropped too. I recovered after a couple of hours. A week later I had blood tests taken at my GP surgery. My TSH was over 100 (range: 0.34 - 5.3) and my T4 was 3.3 (range: 7.1 - 21.1). I had gained 6 stones in two years. My blood pressure was very high. I was pre-diabetic and I felt absolutely terrible. I was referred to an Endo, who prescribed Levo. He gradually increased the dose over a year or so because it wasn't improving symptoms. He then added 10mg T3 to 75mg of Levo. I lost 5.5 stone and felt a lot better for the next 12 months or so. He took out the T3 due to NHS costs.

I started my own Cleaning business a year ago. I've had to push myself very hard, five long days a week. The old symptoms have come back. I have gained three stones and am running on empty. My blood pressure is rising and I look and feel awful. I've raised my Levo dose to 100, then 150mg. No difference. I have a bottle of T3 tablets left, and have added T3 back in. Still no difference. I'm Vit D deficient. I've been supplementing this plus B12, magnesium, selenium, zinc, K1, K2 for a month.

I am terrified that I am heading for the same untimely end as my father. Can anyone help with what's going on, and potentially what I can do to get better? Thank you for reading my very long Post!

My blood test history (roughly every 3-6 months since 2014.

TSH (range - 0.34 -5.3) T4 (range - 7.1 -21.1) T3 (range -4.3 - 6.8)

0.05 12.6

0.51 17.1

>100 3.3

0.08 Levo started 14.9

0.03 15.5

0.17 Levo + t3 added 8.9

0.02 18.2

0.01 t3 stopped No test

0.01 latest test 23/03 12.6 5.2

100mg Levo/no t3

9 Replies

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  • Hi Redsusan57

    I'm having trouble understanding your blood test results' i'm not sure if its just me being thick but can you state what your current TSH, FT4 and FT3 results are.

  • I tried to show my results as a table, which looked ok until I posted! Sorry about that.

    As you look at the list under blood test history, it's TSH result (range - 0.34 - 5.3), followed by T4 (range - 7.1 - 21.1). I've only ever had one T3 test. That was a couple of months ago. 5.2 (range - 4.3 - 6.8). At that point my TSH was 0.01 and T4 was 12.6).

    Could there be a problem with my pituitary? (Low TSH even without Levo?)

  • When you were diagnosed, your TSH was 100, so, no, there can't be a problem with your pituitary.

    TSH is very unpredictable, there's no knowing how much of what it's going to take to lower it. But, had you had a pituitary problem, your TSH would never have reached 100. :)

    It's not that the levo has stopped working, it's just that you're not taking enough of it. 100 mcg is not much more than a starter dose. And, if your endo added in T3, one assumes you don't convert very well. You would, therefore, have to take a lot of T4 to get your FT3 high enough to make you well. It's low T3 that causes symptoms, not T4 or TSH.

  • Welcome to the forum, Redsusan57.

    If your latest results are TSH 0.01, FT4 12.6 and FT3 5.2 there is scope to increase dose.

    How long have you been taking 100mcg Levothyroxine and how much T3 have you added back in and for how long?

  • I've been on 100mg for around 4 months. I added back the t3 (10 mg) around a month ago.

  • Redsusan57,

    You could increase T3 to 20mcg if you have enough. It would be an idea for you to buy some T3 online before you run out as your endo has stopped prescribing.

  • Hi Susan

    Hashie's must go Gluten Free forever, Sugar and Lactose free until their adrenal system's can recover. A good diet to follow for 3 month is FODMAP diet, developed by researchers at Monash University.

    As you said you were stable on a combo of synthetic T3 and T4. . It sounds like you don't convert T4 very well and need the T3 daily. Possibly the reason you didn't respond to T3 recently is your adrenal system is now so messed up, T3 isn't helping yet.

    My guess is you will need to reduce your stress levels significantly, get on a reliable combo of T3/T4, make time for a 60min daily brisk walk and eat within your guts ability for absorption. I would consider NDT or Synthetic T3/T4 combo. You will probably have to import privately and pay $3-4 perday for the privilege. But really it's only the cost of a takeaway coffee, and it keeps you alive.

    When you get the combo right you will loose weight and have 90% of your former energy.

    J

  • Do you have your Vit/Min results? You may not be supplementing enough for your deficiency. Did you have Ferritin and Folate tested?

  • Thank you all so much for your help...it's really appreciated and makes me feel far less alone. I will increase the T3 to 20mg, and will look into buying this online. I haven't had ferritin or folate tested, so will organise that. I don't have the range for my vit d test. My result was 28 (deficient). I took 10000 mcg every day for 4 weeks and now 10000 every other day. I have been gluten free for the last two years, and will certainly look at the FODMAP etc. Stress reduction is hard but I will do all I can to improve this situation and will also walk much more. I am also much clearer on what's actually happening e.g. Pituitary not involved.

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