Worried about girlfriend

Hi this is my first post on behalf of my 31 year old girlfriend. She has under active diagnosed 2013 and she takes levothyroxine though was on T3 and felt well on it. She had 2 ultrasound scans, first one showing an enlarged thyroid gland and second one showing damage to the thyroid gland.

She has throat tenderness and she says when she feels the front of her neck where her thyroid is she can feel one lobe sticking out more than the other. She has difficult swallowing as well and she has gone from 47kg to 53.6kg within a month.

Her endo has dismissed her symptoms as generalised anxiety and this has upset her.

Advice would be appreciated.

7 Replies

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  • Firstly I am not medical at all, but wanted to say how wonderful you are for caring about your girlfriend and taking the time to post something like this. I hope others more 'medically minded' can offer you better advice.

    Sadly my experience with the Endo is much the same - they put it down to anxiety, depression and yet they must realise, by dismissing us it makes us feel worse and of course can cause further anxiety. You didn't say how long the scan was, or give any recent results of tests if you have any. People on this site are very good with understanding test results and would be more than happy to advise. Is your gf still on T3 or anything else?

    I am on Levothyroxine at present and awaiting blood tests. Blood tests from a GP that test your Thyroid Function, D vitamins, B12 and iron are a good indicator of what could be happening. Regarding difficulty swallowing etc. I have always felt self conscious about my neck and had problems swallowing. I found being on Levo and being completely gluten free has helped - although I appreciate it may all have been in my head and I am awaiting a scan.

    I would suggest she go to the GP if possible - if she has continued symptoms of Hypothyroidism she can ask them for a further blood test to review results. If she has difficulty with swallowing etc, maybe they can provide a further scan. I wish you both all the best in the world. It's not easy dealing with GPs and Endos etc. Some are sympathetic, have understanding and want to do the best, whilst some others are fast to dismiss and somewhat ignore - probably because it's not them. Best of luck for you both. If you have any results please post because I know there are loads of great people who can better advise out there. xx

  • Thanks, the first ultrasound done 2012, second one 2017. She is no longer on T3 and she has bloods done a month ago.

  • So an endo has removed T3 from her? How long ago. Was this different endo than the one that started her on it?

    It's being removed under false pretences due to cost. They are are trying to disguise this

    Does she have Hashimoto's also called autoimmune thyroid disease- diagnosed by high thyroid antibodies - usually only TPO tested, but may have TG antibodies tested too

    An endocrinologist is not a psychologist and not in a position to diagnose a mental health issue.

    Symptom of under medicated thyroid is often anxiety and dealing with difficult endo doesn't help!

    Can you post recent blood test results since T3 removed and tests when on T3 if you have them

    Also very important are vitamin D, folate, ferritin and B12 - these need to be at good levels for thyroid hormones to work and when T3 is removed these often nose dive

    Post if you have them, including ranges

    There have been many many patients turn up recently with similar ill health after T3 has been stopped - it's a financial decision due to outrageous price increases

    m.imgur.com/a/U42vD

    dailymail.co.uk/health/arti...

  • Thanks she had her T3 taken away by the same endo 2 months ago. Her antibodies are raised and I will post other results now.

  • I don't know why Endocrinologists are so hard and insensitive.

    I will give you the following link and you and your girlfriend can sign. Also make an appointment to see and complain the her MP. I believe it is within this link.

    healthunlocked.com/thyroidu...

    The fact is that if we have a clinical need of T3 it should not be withdrawn. Many of the authorities have taken this chance to withdraw T3 from everyone, which they shouldn't have done because it makes us unwell and have symptoms.

    T4 - Levothyroxine - is an inactive hormone.

    T3 - Liothyronine - is the only active thyroid hormones required in the fillions of receptor cells in our body.

    Some of us cannot convert T4 to T3 and we remain unwell.

    It is the Endocrinologist's suggestion that has caused your girlfriend to be generalised anxiety, so would he be anxious if he'd have the Active Thyroid hormone removed from his/her prescription.

    She could try increasing her dose of levo at present, or sourcing her own T3. If she wishes to do that you'd have to put up a new post asking where to source it as we don't permit it on the open forum.

    When she has a blood test it has always to be at the very earliest, fasting (she can drink water) and allow an hour's gap between last dose of levo and test. This keeps TSH higher and that's all Endos look at.

    I would also get a private blood test and we have two private labs who do home pin-prick tests. It will also show if her Free T4 and Free T3 are low.

    She should test, following above advice, at the earliest, TSH, T4, T3, Free T4, Free T3, and thyroid antibodies.

    GP should test B12, Vit D, iron, ferritin and folate. Everything has to be optimal not 'normal'.

    thyroiduk.org.uk/tuk/testin...

    These are home postal blood tests.

  • Thanks she has had all blood tests done.

  • Might be worth testing for DIO2 gene variation.

    thyroiduk.org.uk/tuk/testin...

    Only available privately and it may help get her T3 back on NHS (not definitely though)

    NHS consultation link - to fill in and say how beneficial T3 was

    engage.england.nhs.uk/consu...

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