Hashimotos help. ... Please

Hi I'm new to your forum. In 2009 diagnosed with hashimotos prescribed levothyroxine since. Latest bloods tsh 0.04, t4 18.5 so GP reluctant to change current dosage of 125mg. Problem is I'm still VERY symptomatic, never felt much better on levo. GP not interested so referring me to chronic fatigue syndrome people as advised my thyroiditis is not responsible. Never seen endocrinology. Does this seem appropriate? Would be grateful for any advice

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  • Well, it doesn't seem appropriate to me. But, then, I'm not a great believer in fibromyalgia. Most of the time, it turns out to be badly treated hypo.

    If your doctor is only testing TSH and FT4, then he doesn't even know half the story. I would advise you to invest in your future health by getting tests done privately. The tests you need are :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    It could be that you are not converting the levo you are taking into the active hormone, T3. And/or that you have nutritional deficiencies, which will not only cause symptoms, but will mean that you cannot synthesize the hormone you are taking correctly. Or, you could have antibodies, which also cause symptoms.

    You can get all those done by BlueHorizon, with a finger-prick test (details on the main page of TUK) except the vit D.

    But, whatever you do, you do not want a 'diagnosis' of fibro hanging round your neck, because no-one will ever take you seriously again. Everything you complain of will be attributed to the 'fibro'.

  • I am very grateful for your reply. Frightened of being labelled as hypochondriac / trouble maker / attention seeker. Will order tests. Have bought several books but GPs keep dismissing any suggestions. I'm not especially assertive.

    Can't thank you enough

  • You're welcome. I'm afraid, when we're hypo, we have to learn to be assertive! :(

  • Hello and welcome,

    I have had to write my post again due to this stupid site not allowing me to edit it.

    Have you had your ferritin, folate, vitamin B12 and vitamin D levels tested? If you have do you have the results and ranges? If you never had them tested it is worth asking your GP to test them as lots of people with hypothyroidism are deficient in these nutrients. You need your nutrient levels to be optimal for your thyroid hormones to work effectively.

    If your GP refuses to test them then it would be worth you doing a private Blue Horizon plus 11 finger prick test and then depending on the results supplementing if necessary. Link - thyroiduk.org.uk/tuk/testin...

    Be aware that GPs are only trained to treat, and the NHS guidelines they are given only allow them to treat nutrient levels that are so low they will cause serious illnesses. This means in some cases the NHS fails to treat people who levels of a nutrient for example iron falls below the WHO recommended guidelines and recent research findings. Your GP can get taken to the GMC if they don't follow the NHS guidelines and this has happened to a few doctors who have tried to help patients. Those who have research posts find themselves disciplined and rubbished in other ways.

    Also be aware CFS is a list of symptoms it is not a disease. And it is easier for a GP to just say you have CFS then give you anti-depressants and/or talking therapies rather than treat the underlying problem, so it is up to you to read up about your illness.

    If there is stuff you don't understand people on this forum are happy to discuss it and give you suggestions. (We come from a wide variety of experiences and educational backgrounds.) We will also give you links preferably links from sites we know the NHS recognises if you need to ask your GP to do something.

    Your first port of call is to start reading the site thyroiduk.org.uk/tuk/ which this is the forum off. The reason for this it has very useful information. Then try and get your blood tests done by your GP.

    Finally Thyroid UK is a recognised charity for those with thyroid disease by the NHS. There is a link to Thyroid UK through NHS Choices. These bits of information is important to know if you are telling your GP "I read this through the Thyroid UK Charity website" (it is best not to mention the forum) as a lot of them think anything they haven't learnt at medical school or on a CPD course is quackery. On the other hand specialists realise they don't know everything so some of them are more open minded.

  • I'm very grateful for your advice. Will order tests and join Thyroid UK to support their work. Feel quite disillusioned with medical profession and quite anxious about the future. Thank you again

  • Once you start reading and learning, your anxiety should go down.

    Also feel lucky that you have seen some of the worst of the medical profession before you have got to a life and death situation.

    In regards to the assertiveness - it is your life and your health so you need to be selfish and look after number one.

  • Thank you seems very inadequate for how I'm feeling after reading your message. I feel believed and understood. I hope there will be something I can contribute in return once I get to grips with things. x

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