Don't Be rushed Into Taking Thyroxine

I believe that the thyroid can become underactive during periods of stress when the adrenal glands are under extra pressure. I was in a very stressful relationship some 20 years ago and went to the doctor with terrible tiredness. My thyroid levels were checked and I was found to be borderline underactive. (as there's no definitive marker for under or over I can't understand how someone can be 'borderline'! but still) I was immediately put on to 100 microgram’s of Levothyroxine and then subsequently increased to 150mg which actually gave me chest pains. I have since gradually decreased the dosage to 50mg. (with my doctors agreement) I believe that if my doctor had waited and maybe asked a few questions as to my emotional state at the time, my thyroid could have been given the chance to recover. (once I got out of the relationship) Now of course because I've been on the drug for so long, I know that my thyroid would have stopped producing the hormones so I have to stay on the drug forever. I believe doctors should use caution when prescribing for a borderline underactive thyroid. It may just recover on it’s own.

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18 Replies

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  • Missdiagnosed,

    The markers for over or underactive thyroid levels are the thyroid blood tests. If your TSH was high in range or mildly over range it will often be described as 'borderline' hypothyroid. Ditto FT4 bottom of range or just below range.

    Most members have difficulty persuading their doctors to prescribe Levothyroxine to relieve their symptoms and certainly don't feel rushed into taking Levothyroxine.

  • Yes I believe that is more the case nowadays but I wish my doctor had given my thyroid the chance to recover. I understand from my doctor that the range from under to over active is very broad and what is natural for one person could be (slightly) over or under for another. Therefore I would still advise waiting and maybe investigating why the throid might be underactive.

  • Polymnia,

    TSH 0.27 - 5.0 is typically the euthyroid range but many members will feel hypothyroid with TSH 2.5 - 5.0. If someone has TSH between 5 - 10 they may be 'borderline' but if they are not symptomatic they could delay taking Levothyroxine. There is rarely improvement in thyroid levels once the thyroid gland has started to fail and 90% of hypothyroidism is caused by autoimmune thyroiditis (Hashimoto's) which progressively destroys the thyroid gland.

  • I guess it is all very subjective. My doctor wished to class me as borderline with a TSH of 10.3 and T4 only just scraping into range.

    I think what is imperative is that we have all the information available to us when making decisions regarding our health. It cannot be left alone to the health care professionals as their agendas can be in conflict with ours: we seek to regain our health, to be capable of work and living a good life - their objectives are to cut patient times and save money.

    I was adamant that with such a high TSH level I wanted treatment straightaway. Being financial well off has enabled me to have more choices with regard to treatment and I am very aware that not everyone is as fortunate as I am.

    I would like to see people taking responsibility for their own health, joining forums such as this and challenging GPs.

    In an ideal world I would also like to see different treatment options available on the NHS for those who simply do not have the funds to support alternate treatment options.

  • Hear hear. I also think that doctors should warn patients if they are put onto a drug that once started has to be for life. I think I ignorantly thought I would take the drug for a while and then I would be alright.

  • No, you've misunderstood that. It's not because you start the levo that you have to be on it for life. You have to be on it for life because your gland can no-longer make the necessary hormone.

    If you took levo when you didn't need it, it would give you hyper symptoms, and you would stop it, no problem. It doesn't do anything permanent to you, it's not a drug. If your thyroid is still capable of producing enough hormone, there's no problem with stopping levo.

  • My doctor told me (much later) that once you start taking thyroxine the thyroid will stop producing the thyroid hormones and shut down.

  • It will stop producing hormone, but it will not shut down. Stop taking the levo, and if you have a healthy thyroid, it will start function again. Even if it's not 100% healthy, it will start making hormone to the best of its ability.

    I don't care what your doctor said. Doctors have told me rubbish so many times that I've lost count! Do you believe everything he says?

  • I was told that my thyroid was "borderline underactive" in the early 1990s. There was certainly no rush to treat me. I didn't get my first prescription for Levo until 2013, when I was still being described as having "subclinical hypothyroidism" despite having practically every symptom under the sun.

  • I'm afraid you just had the bad luck to have a doctor who doesn't know the protocol. Levo should not be prescribed on the first over-range TSH test. You should wait three months, at least, and test again. And then, the starting dose is 50 mcg, with 25 mcg increments every six weeks. I'm afraid he got it wrong from A to Z!

    Your thyroid may have stopped producing hormone whilst you were taking 150 mcg (not mg!), but if you stop taking levo altogether, you thyroid will start producing again - if it's capable. The fact that you've been on levo for such and such a time, has nothing to do with it. Taking levo does not physically affect your thyroid, it just has a little rest. Levo is not a drug, and starting it doesn't mean you have to stay on it, that's wrong. The thing that means you have to stay on it is having a sick gland.

    You do not say how high your TSH was on diagnosis. But stress would not make it rise massively. Saying you were borderline is just the doctor's opinion, nothing scientific about it. And their opinions have been known to be wrong. Some doctors call a TSH of 10 borderline, but given that you are hypo when your TSH hits 3, I think that's stretching things a little. But, I do not think that stress would give you a TSH of 10. So, what was the actual number?

    If you really think you were misdiagnosed, stop the levo. Give your thyroid time to get going again - three months? - then get tested again and see. Healthy thyroids do not stop working permanently just because you take levo, they bounce back. That's one of the great things about them.

  • Exactly. Symptoms can be stress related, but maybe one off test was a) transient phase after viral infection b) error caused by numerous of reasons c) excessive iodine intake d) real

    So second test after certain time could have confirmed the diagnosis. Starting dose was too high and reducing possible because

    A) better absorption B) improved nutritional status c) different brand that works better d) losing weight e) and so on.

  • We are talking about over 20 years ago and I really can't remember what my TSH test result was. Yes I meant that I was on mcgs.

  • I always think of taking thyroid hormones, if you don't need them, as being a bit like being on the contraceptive pill. While you're on the pill, your ovaries don't do what they'd normally do. But it's not often you hear anyone say, "Oh, don't take the pill - your body won't be able to cope again without it", is it?

    If your thyroid was ok before you took the medication, it'll be ok if you stop, after a couple of weeks of adjustment. But if it wasn't, then in all likelihood you won't get that adjustment.

    For what it's worth, a healthy thyroid would probably produce more than 50mcg of levothyroxine. I hope your doctor is monitoring your blood results while you taper off to see if your thyroid is making up the shortfall. If not, you're likely to start feeling increasingly worse over the coming weeks and months. As long as you're taking levo you're artificially affecting the feedback loop between your pituitary gland and your thyroid and it may be that 50mcg affects that loop enough for your thyroid not to get the signal to make more thyroxine. Which isn't good at all - every cell in your body needs thyroxine. You might want to consider stopping altogether now, rather than confusing your pituitary gland any longer. The research I read on this recently suggests that if your thyroid is healthy, your levels will return to normal in about a fortnight, so long as your nutritional requirements - ferritin, Vit D, Vit Bs, selenium etc, are optimal. If your thyroid isn't healthy, well, put quite simply, your levels won't return to normal and it's likely you had a thyroid issue all along.

  • And er, just to clarify, are you Polymnia the same person as Missdiagnosed? It sort of reads as though you are...

  • Hello,

    I had similar experience, under similar stress, exhausted & hair also falling out. I suspected thyroid due to symptoms and when tested, tsh was 9. I was told I was 'borderline' when retested and my tsh was down to 5. After 12 years of feeling (very) ill (depressed, tired, aching joints etc), I was finally diagnosed with Hashimoto's (antibodies greater than 1000 and tsh 14). Stress can trigger genes for disease, so it might be worth finding out if you have antibodies to thyroid. Also, more recently, discovered autoimmune reaction to gluten (as in Coeliac's disease - paid for private test) that I must have had for a long time & could have contributed to Hashimoto's disease. Health is so complex!

    Please take the best care of yourself, and I hope you keep well x

  • I have no Thyroid so have to take Levo, 50 mcg plus Adcal -D3. This is my only prescribed medication.

    I have argued that 50mcg is too low for me but they go on my TSH readings which they want in range/ as low as possible. I believe it is around 1

    I have no T3 readings that I know of. I was taking Salvestrols but the company have failed to send the last lot. I have recently just started taking Super Cortisol Support for Adrenal Support as I was so fatigued. These are Herbal, I have now also added Sperovine to my list.

    My doctor under pressure from me (now in a wheelchair) and the likely hood of possible Addisons Disease has given me Prednisolone to keep me semi functioning until the date for my Addisons test comes through. Then I will have to stop Prednisolone 48 hours before the test !

    Just had my test date through 7th June.

  • I have no thyroid either Lilith_2 also on Alfa-calcidol. 50 mcg Levo is not sufficient for somebody without a thyroid. Perhaps you need to find a better doctor who knows what he is talking about.

    Good luck!

  • So agree. Stress is the culprit in many of our problems

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