Is this normal?

Hi all

I have been on the increased dose of 50mg Levothyrozine for about 2-3 weeks now, but I still have no improvement in my symptoms. Still got pain and pins and needles/tingling. Keep forgetting words or saying the wrong word for things. Exhausted all the time and headaches. The pain and discomfort seems worse when I'm at rest!!! Is this normal, I'm due to have my next blood test in November.

Any advise to help me cope till then.

I work as a nursery nurse in a private nursery full time, too.

Thanks

19 Replies

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  • Tanngales You need to be patient. As mentioned in reply to your previous post, it can take months to find your optimal dose and for all your symptoms to improve. It takes 6 weeks for each dose increase to be fully absorbed and make a difference.

    You were also advised to get vitamins and minerals tested as these are very important. All need to be at optimal levels for thyroid hormone to be able to work. Have you had them tested yet?

  • Doctor won't test for vitamins. I am taking vit c and electrolytes, (separate tabs) effervescent each morning. Supposed to take iron too. Prescribed.

    Was considering taking those well women tabs too.

  • Do you mean a multivit? Waste of money! And, you shouldn't take some things without getting them tested first - you could do yourself harm! If your doctor won't test vit D, vit B12, folate and ferritin, get them done privately. If they are low, you are going to continue suffering. If you don't take enough you will continue suffering. If you take them when you don't need them, you could poison yourself. So, you really should get them tested. :)

  • Ok

    Thank you I will look into a private test, just not sure I would be able to afford it.

  • Even if you can only do them one at a time, and start supplementing one at a time, that will be better than not doing anything.

    Some things you can take without testing : vit C - you can take up to 5000 mg. Magnesium up to 450.mg. Selenium up to 200 mcg. Zinc 15 mg. But, you must test vit D, vit B12, folate and ferritin. :)

  • But if you want to get well and for thyroid hormone to work properly, they need to be tested and any deficiencies/low levels addressed.

  • How long have you been supplementing vitamin D and what dose do you take. Do you know how low it was before being prescribed. It needs retesting

    Pins and needles can be due to low B12. And word muddling. This needs testing along with folate.

    Ferritin needs testing, as you are already on iron supplements

  • Never tested, doctor just prescribed it. To be honest not taken it for a while.

  • Dr would never have prescribed vitamin D without testing it first, so I suggest you find out exactly how low it was.

    It would also have to have been pretty low for Dr to prescribe (probably under 25) . If it's only slightly low (25-50) they usually advise you to buy your own supplements.

    How long ago were you first prescribed, ring and ask receptionist if it wasn't too long ago

    Or ring and ask if the practice has blood tests online if you register for online access to your medical record

    Alternatively for £28 get private test including free oral spray Vitamin D supplements

    With Hashimoto's you need it at least above 70nmol, around 100nmol is better

  • Hello sis

    Your still getting your dosage settled as such, it's a bit of a time process, that said Levo (T4) might not be working well for you but it's a bit early to tell right now to be honest. Your body has to get used to a metered dose of synthetic hormone rather than a natural release due to your Thyroid defect and this will cause further fluctuations that will settle down in time .... bit of a git I know and we all know all too well how horrible you can feel ...

    Once again I'd suggest the private Blue Horizons Thyroid + 12 blood test in the future as there are other aspects that might be in play here that the NHS completely ignor such as Hashimoto's desease (That's what I have) T4-T3 conversion ratios, RT3 levels and so on .. But it's a bit early for all that yet. You could ask to see an Endocrinologist who may look at other things like your Cortisol levels BUT they completely ignor will NOT check for RT3, lie about and manipulate T4-T3 conversions ratios (so they can get out of prescribing T3 as they are cowards who only care about their obscene NHS salary, in case they get in trouble with the NHS who are trying to remove T3 from prescription totally due to the company that owns the patent for T4 also have the monopoly of thyroid medication in the UK and charge £9.00 per pill of T3 when it can be sourced for less than £10.00 for 100 pills from foreign sources so that they can make millions from their T4, it's VERY unethical but that's what goes on) and only treat Hashimoto's with T4 anyway ...

    I also suggest you review Seasidesusies replies too concerning vitamins, minerals etc as they can help the Thyroid medication work more efficiently, also consider a total gluten free diet ...

    You will get there sis! Just be patient .. Try NOT to bow to the symptoms too much but don't fight them to the death either .. Eat well and healthy, keep yourself well hydrated. Your job gives you a bit of exercise which is VERY important .. As said we all know that it can feel like your doing SAS selection everyday that you wake up but if you don't you'll put on loads of weight, not look after yourself etc and make it all a lot worse!!

    You will NEVER be free of it totally .. Even with a settled dose of T4 or T3 ... I still get symptoms and have days where I feel like I have been trampled by a herd of elephants, even though I'm now well medicated and have TSH levels less than 1 ... Learning to live with it is also a very important part of it all ...

    We will help you sis I promise .. 👍🏼👍🏼❤️❤️

  • Will see how it goes, I can't afford the private blood test.

    So will need to rely on the N.H.S ones :(

    Didn't know gluten was an issue, I am practically lactose free, due to IBS.

    I hardly eat bread, or pastry.

    X

  • IBS with Hashimoto's is pretty likely due to gluten

    Many find strictly gluten free diet helps a lot

    thyroidpharmacist.com/artic...

    thyroidpharmacist.com/artic...

    amymyersmd.com/2017/02/3-im...

    chriskresser.com/why-changi...

  • Hashimoto's?

  • Hashimoto's is also called autoimmune thyroid disease. In UK about 90% of hypothyroidism is due to Hashimoto's.

    To confirm diagnosis GP should test thyroid antibodies. If raised this is Hashimoto's.

    As you and your brother both have it, and your brother definitely has Hashimotos it's almost certainly you have Hashimoto's too

    Private test would confirm it too.

    Useful to measure antibodies periodically especially when on gluten free diet as it encourages you to stick on it, as it shows levels falling.

    NHS will only ever test antibodies once, and even that is rarely done

  • Oh right

    I will push for it to be tested, and tell them about my brother having it and that I need to confirm if it is.

    Thank you

  • I wouldn't even bother with the rT3 test unless there is a reason to suspect this might be a problem. Usually it's a high dose of Levo, high FT4 and lowish FT3. It's an expensive test.

    Not sure how generous you are to your sister at Christmas Quasarlis but perhaps you can contribute towards the £99 needed for a Thyroid Plus Eleven (BH) or a Thyroid Check Ultravit (Medichecks, which is often on offer at £79). Or get the family to contribute towards it, and give it as a joint present!

  • I mentioned the text for future reference if she doesn't feel any better. As with my Blue Horizons test you saw that I had Hashimoto's, low T4-T3 conversion and high RT3 ... This may well be the case for my sister. Also she may start converting the Levo to RT3 in time ... But as we say it's all a bit early for all that yet .. Tracy, I'll happily contribute to the price of the test if you feel it's needed in the future. I have had HYPO THY for many years with no real help from taking 225-250mcg of Levo and being forsaken by the uneducated, coward GP's and Endo's and I'm glad I did .. I take T3 now and I do feel much better, have my bad days of course still but your circumstances may be different, you may do well on Levo, just too early to tell yet.

  • Thank you so much

    I will give it time, maybe I'm being too impatient. If the private test is essential I will find the money somehow.

    Thanks bruv but I will get help from hubby if I really need to.

  • Thank you everyone, and if needed I will get the money from somewhere, thanks Dan. Maybe I should give it time and see how my body does.

    Hashimoto's ?

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