Recently Diagnosed

I've just been recently diagnosed with an under active Thyroid. I'd been going to the doctors with recurring mouth ulcers for over 2 years, but they were getting really bad and not healing, I was wondering if anyone else had this symptom. I'd had loads of blood tests last year, including my Thyroid but nothing showed up, but I'm sure I've been getting a lot of these symptoms for well over 2 years, does it not always show up? It was just a routine health check, that notice my cholesterol levels had gone up slightly and they were going to check my Thyroid and then the penny dropped. I went online and I had 8 out 10 of the symptoms. I'd been going back and forth to the doctors with different symptoms but not 1 doctor linked them together, very frustrating because now the symptoms are quite bad. I was wondering how long before I start feeling better?

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  • Hi Kathy, welcome to this forum.

    As you say, 'nothing showed up', but the difficulty is that most doctors won't diagnose a thyroid problem if your results are within their range, but many of us here know that their ranges are misleading.

    For example, my first thyroid test showed the TSH at 6.4 (range 0.25 to 5) so I was just over the range and was treated. If it had been 4.9, just within range they might not have treated me, but I would still have been unwell as my TSH (thyroid stimulating hormone) was having to work too hard. There is a difference between a test result which is 'in range' and one which is 'optimal'. Different labs (where the blood is tested) may have different ranges, and other countries have lower ranges.

    Ask your GP's surgery for a printout of your tests, then post them here (with ranges) for people to advise you. If they don't want to give them to you say that it's for your own records. You are entitled to have them.

    As you say you've been diagnosed, what have they prescribed for you?

    Learn as much as you can. A good place to start is the ThyroidUK website at

    thyroiduk.org.uk/tuk/index....

    All the best. There's always someone here to answer any queries or bend a listening ear if you feel like a good moan.

  • How are your B12 levels ?

  • Don't know they didn't say.

  • Am afraid you have to ask for the test - along with Ferritin - Folate - VitD. Then ask for copies of the results.

  • I had all those done last year and my VitD was low, but do you think the others will have changed like my Thyroid?

  • What were the results of the others ..... ?

  • Thank you so much I will ask.

  • I'm on 50mg of levothyroxine.

  • If you have low Vit D, B12, folate or ferritin your body will struggle to convert the levothyroxine (T4 inactive hormone ) to the T3 your body can use. Your dose is a starting dose and you need to aim for a TSH below 1, not just in range.

  • Thank you, I'm going to book to see my Doctor today if I can.

  • I had terrible mouth ulcers when my B12 was low. It was in range so the doctor told me all was fine. On here I learnt that this was not the case so started supplementing high dose B12. After a couple of months the ulcers got better. A year after starting to supplements, I now have none.

  • I had a similar experience, Kel8.

    In my case I didn't have B12 deficiency I actually had lots of serum B12. In the end I had so many symptoms of B12 deficiency despite the high serum levels that I started supplementing with high dose methycobalamin out of desperation. I also take adenosylcobalamin a couple of times a week instead of the methylcobalamin.

    Based on my reaction to the B12 I appear to suffer from what is called a functional deficiency of B12. In other words I have plenty in my bloodstream but not enough of it gets into the cells.

    I actually found my mouth ulcers got substantially worse before they got a lot better than they had been in years. It took about 3 months before I got to that stage.

    As well as my mouth ulcers improving (eventually) I also got benefits with some other conditions - my lifelong eczema and spots have reduced and virtually vanished. I also have a problem with my balance and that has improved with treatment too.

    It is a good idea to take a good quality B Complex along with the B12 - one which contains methylcobalamin instead of cyanocobalamin (which should be avoided), and methylfolate instead of folic acid.

  • Thank you that was really helpful. I'm going for more blood tests this week, I'll see what they say.

  • Kathy,

    This may/not apply be relevant to you -https://www.ncbi.nlm.nih.gov/pubmed/10459117

    And Vitamin D info -https://healthunlocked.com/thyroiduk/posts/131207988/dr.-mercola-interviews-endocrinologist-prof.-holick-re-vitamin-d

  • Mouth ulcers can also be a symptom of Coeliac Disease. It is possible to have CD without showing any bowel symptoms. Symptoms can be vague like low vitamins & minerals and things like mouth ulcers. Also it is worth recognising that many of us have more than one auto-immune condition sadly

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