From Hypo to Hyper - I know this is not possible so what's going on?

Hello, I would really welcome any words of wisdom. I am a little confused by my latest blood test. In February I was diagnosed with Hashimoto's thyroiditis after 2/3years of various symptoms.

24th Feb - TSH - 12.703

(0.550-4.780)

28th Feb

TSH - 7.191 (0.550-4.780)

T4 Libre 10.36 (11.50-22.70)

TPO 433.3 (<60)

After these results in March I was put on 25mg of levo for 2weeks, increasing to 50g)

My next blood test was 12/05/2017 and was TSH - 5.383 (0.550-4.780) - I was given an increase to 62.5mg

During June I began to feel 'normal' but I had a relapse in July and felt awful.

My next appointment was 13/07/2017 - and next blood test just before the appointment was TSH 1.534 (0.550-4.780)

Much against the endrocologist advise I was given an increase for Levo to 75mg. I really argued the case for it because I was feeling rubbish and was thinking I would feel better if I could get down to 1.

Since then I have beginning to feel better but had started to have major hot flushes and sweats, losing weight, not sleeping at night...I had written a post about it and it was assumed I was having a Hash flare up as 75mg is not a high dose.

To date the sweats and hot flushes have gone and I am feeling ok but still tired and not sleeping.

I had a blood test today and on the paper from the clinic they have written I am Hyperthyroidie as my TSH is now 0.060 (0.550-4.780)

I am confused by this - should I cut my medication back to 62.5mg which presumably will take my TSH back to 1.5mg? I am just fed up of feeling tired all the time, being forgetful and emotional amongst other things. When I was on that dose I still didn't feel well. I would really welcome any clarity or thoughts. I have found my doctor and endrocrinologist unsympathetic and knowing little about Hashimoto's.

?

24 Replies

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  • It does suggest a possible Hashi's flare, but impossible to say without the FT4 and FT3. If it is a flare, you just need to stop your levo for a while. Don't reduce the prescription, because the flare is only temporary, and you will become hypo again afterwards. But, you cannot presume that your TSH will go back to its former level, if you cut your dose back to your former level. The TSH is unpredictable, and as such, should not be used for dosing. It really doesn't matter how low it goes. Neither your GP nor your endo know very much about thyroid at all, do they.

  • Should I stop levo all together? And can you tell me about FT4 and FT3 - I don't know why they don't test me for this? What do they show? Thanks for your help😀

  • You mean stop it permanently? Lord no! You're going to go hypo again. Just stop it for a while, and see if you feel better. If you do, stay off it until you start feeling hypo again. If it doesn't make you feel better, continue with it.

    T4 and T3 are the actual thyroid hormones. TSH is a pituitary hormone.

    When the pituitary senses that there is not enough thyroid hormone in the blood, it produces more TSH to stimulate the thyroid to make more T4 and T3. When the pituitary senses there is enough hormone in the blood, it lowers the level of TSH it produces. That's putting it simply, it's a bit more complicated than that.

    T4 is a storage hormone made by the thyroid - the test is called Free T4 (FT4) - it has to be converted into T3.

    T3 is the active hormone, needed by every single cell in your body, to function correctly - the test is Free T3 (FT3). When there isn't enough T3 to go round all the cells, you start having symptoms, your TSH rises, and you are hypo. The FT3 is, actually, the most importent test to show thyroid status.

    So, why do they only test the TSH? Basically, because it's the cheapest test. Therefore, doctors have been brainwashed into believing that it is the only test they need to do to tell exactly what is going on with your thyroid. The idea is laughable, but, there you go. That's modern medicine for you. It's all about money, not about the well-being of the patient. :(

  • Thanks for that great explanation! There is no way I'm going to be able to explain that in french!! I will ask my doctor for a t3 test but I have a pretty good idea she won't go there... maybe I can get one privately done...

  • LOUPS,

    TSH 0.06 doesn't mean you are overmedicated as long as FT3 is within range. I wouldn't reduce dose from 75mcg unless you feel overmedicated.

  • Sorry! I didn't realize greygoose had kindly answered those questions... that reply has just come in.

  • Ok, thanks. I do feel ok - tired and not sleeping and periods seem to have disappeared again... but I feel so much better than I did in February. I have never had a F3 test. What does it indicate and why don't they usually automatically test it? I know the endocrinologist will want cut back the levo dose again which is worrying me.

  • LOUPS,

    If you are replying to greygoose you need to use the Reply button underneath her post so that she gets an email and on-site notification that you have replied.

  • I'm totally useless- I always forget that! Ggrrrr!!!

  • By the way, is there anyway of knowing if it's a hashi flare or over medication? I'm not sure which one it is...

  • LOUPS,

    If you've been on 100mcg say for a while with in-range results and test suddenly shows suppressed TSH with high out of range FT4 and FT3 it could be due to levels buidling up and making you overmedicated, or it could be due a Hashi flare dumping hormone into the blood stream. If it is a Hashi flare thyroid levels should drop after a few weeks. If thyroid dose was reduced levels could then plummet making you hypothyroid. That's why it is essential to have follow up thyroid tests 6-8 weeks after any dose adjustment.

  • Ok thank you for the information. I think I may alternate 75mg and 62.5mg and see if that helps (I have another blood test in 2 weeks) and I will ask the doctor for FT3 and FT4 tests.

  • LOUPS,

    Not much point in switching dose if you have a blood test in 2 weeks. Better to wait and adjust dose after your blood test.

    FT3 is rarely tested in primary care. You can order private thyroid tests via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

  • Thanks again - I was going to adjust because of the results I had today - but if you think its better I will wait and see if the results differ whilst I am still on the same dose in two weeks. The TSH tests are so close together because I have been away and couldn't get the first one day at the end of July. I will get the FT3 and FT4 done privately. Do you know an address for France?

  • LOUPS,

    I'm confused. Why are you having blood tests in 2 weeks if you had blood test results today?

  • I saw the endocronologist in July and she gave me a prescription for TSH and vitamins etc. And a second prescription for TSH to be done the end of September before my appointment with her. She was off on holiday and told me to see the doctor with the results of the vitamins. I was going away the next day so I had the vitamin tests done that afternoon, but I couldn't have my TSH because I had already had the levo that morning. I finally got back at the weekend and had the TSH test today because I have an interim appointment with the doctor to discuss the vitamin results on Wednesday. So I stil have the perscription for the second test to be done at the end of the September. She really reluctantly gave me the increase to 75mg in July and I know she will see the result of the latest TSH and insist I cut the dose. She said at the last appointment I was on my way to being hyper because I cried at the appointment and seemed anxious. Which I guess I was not because I was hyper but because I felt so unwell and I was stressed after she had gotten cross and had taken down her book to prove I was in range and didn't need an increase. Sorry for rambling on!

  • LOUPS,

    I still don't understand why you are retesting TSH in only 2 weeks. I said earlier that TSH 0.06 does not mean you are hyperthyroid as long as FT3 is within range. Perhaps you can persuade your GP or endo to test FT3 to check.

  • I will try to do that. I was only retesting because I had the prescription, but if the result is pretty much going to be the same I won't bother🙂

  • Sorry, I don't know where you can get FT3+FT4 labs in France but greygoose may be able to advise.

  • Ok, thanks Clutter I will ask.

  • So, you live in France? It's easy, when you go to get your TSH done, next time, just ask them to test the T4 libre, and the T3 libre, and say you will pay. I don't know how much it will cost you, but it won't be a fortune. :)

    That endo of yours sounds pretty useless! Is she in France, too? Why not go and see a different one? You don't need a doctor referral, in France, you just ring and make an appointment.

  • Thanks for that info greygoose - I'm going to ask for t3 and t4 libre from my doctor on Wednesday. I live in really rural France - I think the endocrinologist I see knows very little about hashimotos - I have asked about diet changes and things I can do to help myself - she told me there was nothing I could do - just be healthy... I'm going to ask my doctor if there anyone else I can see because I haven't found anyone else in the area. I am willing to travel if I can get a good referral - that would be Montpellier (about 1hr40mins away) . I don't suppose anyone knows a good endocrinologist in Montpellier? m?

  • You can buy Levothyroxine OTC in France without prescription, less than 3 euros a pack. Just saying that if the doctor cuts your meds it's possible to keep the dose as you want it, if you have to.

  • Ah good to know. Thanks!

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