No better on trial of 25 mg levothyroxine, now getting hot flushes which I didn't have before!

A GP in my practice is finally listening to my symptoms and not the blood test results. He has given me a trial of 25mg levothyroxine but I really do not feel any better after many weeks. If anything I now have bad hot flushes keeping me awake at night. I wake up with a very bad headache. I am still taking Premarin (lowest dosage) every other day, which the GP said keep taking together with Levo. Obviously I would love to come off Premarin after over 10 years but the hot flushes and other symptoms are awful. I take the Levo with my breakfast as the GP said do not take on an empty stomach. I tried that when I was first prescribed and I felt awful driving to work! Am due at the Dr's tomorrow lunchtime any advice would be greatly appreciated.

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  • I suggest you have a read of a blog I posted very recently - and the comments.

    thyroiduk.healthunlocked.co...

    You might also care to read a poll here about when people take their levothyroxine:

    thyroiduk.healthunlocked.co...

    I do not know what to say about the Premarin side - hopefully someone with experience will come by soon.

    Rod

  • Hello there Valeria...I found 1000mg evening primrose oil dealt with horrid oestrogen-like side effects within a week. Feel like new person. As someone who use to work in the drug industry I highly prefer natural gamma linolenic acid (GLA = omega 6). There's lots of conflicting info on this. The drug industry/medical websites have differing views amongst themselves; talk of clinical trials etc...but never seem to fully reference the clinical data and argue it has no effect. Conversely functional medicine talks of oestrogen dominance and beneficial effects on natural GLA. I write this based on my own quite extraordinary experience as someone from the drug industry who hates taking medication. Have been on levothyroxine for 10 years and was at the end of my tether - conflicting symptoms, feeling rubbish, crushing tiredness. Systematically (with help) I've eliminated most of the causes AND symptoms. My first change was to start EPO after a nurse at the hospital suggested it. Did some research, tried it out. Bingo! A suggestion; that's all. Always good to get a full view of all your results and symptoms otherwise hard to know what the whole picture really is. Good luck. Kx

  • Thanks for your reply. I did try EPO before I started taking Premarin (over 10 years ago) it worked for a while but then my symptoms were bad. would love to come off Premarin, am taking one every other day but feel dreadful if I miss more than 2 days. Will discuss with 'sympathetic' GP tomorrow. Am a little confused are you still on levothyroxine or do you just take EPO now?

  • I'm amazed to hear that women are still taking Premarin. I thought it had been discredited years ago. I've only ever heard bad things about it but would never try it myself. Try reading about it here :

    en.wikipedia.org/wiki/Premarin

    My doctor said one should never take estrogen by itself, but always with some progesterone.

    But how long have you been on 25 levo? It is just a starter dose, just enough to stop your thyroid from producing its own hormone, but not enough to make you feel well. Your doctor should have tested you and increased your dose after six weeks. Plus the fact that your Premarine could be interfering with the levo, I doubt your body is getting much thyroid hormone at all. No wonder you don't feel good!

    And I agree with Rod, taking your levo with food really isn't a good idea as so many things in what you're eating could interact or bind with the thyroid hormone. Actually, I doubt if you are getting any into your cells at all.

    It's a shame, your doctor may be listening, but he really doesn't know the first thing about treating thyroid. The way he's handling it, it's not much of a trail at all. He's set it up to fail. In your place I would tell him I need an increase, and try taking it at night.

    Hugs, Grey

  • Thanks for your quick reply. Have taken 25 levo for a month, GP wasn't happy when I mentioned taking it atnight, he said I would be awake all night! He didn't agree taking it on an empty stomach as he said it needs food to do it's job (or words to that effect!). What I would love to do it come off Premarin completely (I take one every other day) but as soon as I miss two days I feel awful my hot flushes are all the time, day and night, rising up to my head leaving me wit a thumping headache. I have severe ood swings etc. I had a hysterectomy at 30 years old (long story) and I lasted many, many years and then my GP gave me Premarin over 10 years ago. I am 56 now. I will discuss as much as I can tomorrow at GP surgery but will probably come out not knowing what to do. A year ago I had a hospital appointment and the Dr got very angry at me for 'wasting her time' as my blood results were 'in the normal range'!!! I came out crying and had to be consoled by the receptionist, not like me a all.

  • Hi Valeria. I can't comment about the Premarin as I don't have knowledge of this.

    However, it is really concerning that your doctor knows so little as to make statements that thyroxine has to be taken with food to do its job. For goodness sake what are these doctors like.

    The patient information leaflets that come with the medication clearly state that thyroxine should be taken with water before food. You should have one in the packet with your tablets - perhaps your GP needs to read it and learn. Has he been responsible for your treatment over the last 26 years?

    You should make sure your thyroxine is taken only with water and clear of any food and drink for at least 30 minutes. Also some medications and supplements should be separated from taking thyroxine by 4 hours for example iron, calcium and indigestion remedies which block absorption of thyroxine.

    Hope this helps xx

  • As I said, your doctor knows less than the average about thyroid. Taking it at night might keep you awake, but you won't know til you try. Lots of people take it at night with no problem, and some of them even say that they sleep better than ever that way.

    And he really hasn't understood about taking it with food. What it needs to do its job is stomach acid to seperate it from the sodium molecule it's attached to in the tablet to make it stable (I think that's right, please someone correct me if I'm wrong). If you take it with food and it binds with calcium or iron in the food, it becomes unusable by the body.

    OK so you've only been taking it for about four weeks (you said 'many weeks' lol) so that's ok, two to go before it's reasonable to have a blood test.

    As for the Premarin, are you planning to take it all your life? Because whenever you come off it, you are going to have to face up to the menopausal symptoms. It's very irresponsible of your doctor to have allowed you to take it for 10 years... Could he not find you something a little more... user-friendly to help you with your symptoms and get you off the horse urine? But it could well be that if you manage to get your thyroid sorted out, the symptoms will lessen, I don't know...

    I had a hysterectomy at 40 but nobody gave me anything afterwards, I was just sent home and left to get on with it! I now know that the hysterectomy could have contributed to my thyroid problems by further unbalancing my hormones. And that the symptoms that led to my hysterectomy were actually hypo symptoms. Ah, well, we live and learn!

    Hugs, Grey

  • Best to wait an hour before eating after taking your levo.

    Grey

  • Hi

    I don't know anything about Premarin, but when I started on Levothyroxine I was also taking HRT for hot flushes and just could not leave it off. I was only taking half an HRT pill a night, but it was the only thing that controlled the hot flushes. I increased up to 100mcg of Levothyroxine, but although it help the hypo symptoms I still had a lot of anxiety, panic attacks, negative thoughts and hot flushes.

    I am now on Erfa NDT only having slowly increased during the last 9 mths to two and three quarter grains and no longer take HRT. All the hot flushes have gone. Anxiety is down, much calmer and negative thoughts are not bothering me.

    I've still got a way to go with achieving the right dosage, but I never thought I'd say that I feel pretty good.

    Hope you get things sorted soon.

    :)

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