Help before endo appt

Hi everyone

I've been hypo over 20 years with hashi. Was on 200mg Levo but still feeling awful - cold, very tired, depression, weight gain etc

After blood test doctor told me I was feeling bad because I was over medicated here are my results

T4 15.4 (7.5 - 21.1)

TSH 0.01 (1 - 3.2)

She reduced me to 150mg Levo

As you can guess I felt a lot worse. They refused to test my T3

I managed to change doctor and after a lot of persuasion they tested my T3

T3 4.5 (4.3 - 6.8)

After research I tried to explain it looks like I'm not converting very well can I try some T3 but as many of you know the doctor said no.

Lots of stressful appointments later I have finally been referred to an endocrinologist. I don't want to come to another dead end so I'm wondering if anyone has been in a similar situation and can give me any advise before I see the endocrinologist on Wednesday.

Many thanks , Helen.

8 Replies

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  • Are these the only blood tests? You say you've been diagnosed Hashi's? So has anyone tested Antibodies? Have you had Ultrasound scan of your Thyroid? Short Synacthen Test to check your adrenals? Perhaps Endo will arrange more thorough tests.

    I think I would make a list of all symptoms with approx dates of recent developments and worsening of symptoms / weight gain etc. I would also ask Endo explanation / reasons.

    X

    🐥

  • You need GOOD levels of B12 - Ferritin - Folate - VitD for an efficient conversion to take place and for you to feel well. Have you had yours tested ? Doubt an Endo will know this - so yes it could be a dead end.

    Are you taking any other medication ? Gut issues ? - which could affect absorption ?

    Private Testing at home is available through Thyroid UK - scroll down menu on the left ....

    thyroiduk.org

  • Read The Thyroid Pharmacist website

    Hashimotos is connected to gut health, food intolerances, (usually gluten) low stomach acid & low vitamin D (important to have very good levels of B12, folate, ferritin & vitamin D) Gut infections common too - H Pylori, candida etc

    Most endos don't seem to consider the gut at all, nutrient levels or the autoimmune aspect of Hashimotos. Many of us find changing diet, & improving vitamin levels improves symptoms & importantly lowers antibodies

    The Thyroid Secret documentaries (on you tube) are excellent

    Also websites by Chris Kresser

    Amy Myers

    Full private blood tests available - see Thyroid Uk website. Very many of us use the thyroid & vitamin test bundle (£99) from either Medichecks or Blue Horizon

    Blood should always be done early am, fasting & no Levo in 24 hours before (take straight after)

    Avoiding soya & fluoride can improve conversion of T4 to T3,

    selenium supplements can also help

  • As the Endo visit is so close look on the Thyroid Uk site and you will find a list of symptoms. Make a note of all the things you have as I'm sure you will have something that you don't think is thyroid related. Also write down your thyroid history, your concerns. Any family history etc the reason I say write it all down is that once we are there nerves can make us forget things and no harm in saying that you have done it as you forget things as that can be a thyroid symptom as well.Don't take your thyroid meds that day as he will do tests and also let him know what else you are taking medicine wise.

    A good endo should be making mores as you take and should send you for tests on the day so be prepared to be there a long time. I came out with a pile of requests for various departments, some like ECG to be don't there and then and some line thyroid ultrasound to make an appointment for. Hopefully you will get some help but beware they can vary a lot ask questions and if you can't understandwhat you are being told ask again! He should weigh you as well but don't over do the point of gaining weight as many think we are trying to get a quick slimming fix so yes it that's a concern then mention it but don't make it the main focus!

    Please let us know how you get on and what he says.

  • I am having exactly the same situation, I think my T3 levels are low and for 20 years I have suffered with hair loss and thin eyebrows. My doctors did think T3 would help but then when he saw the price refused to prescribe it. I have tried to buy it online but I am struggling to find a reputable supplier, does anyone know where I can get it from, as I would like to try and get my hair back

    Many thanks

    Claire x

  • Hi Hele, I've been on a similar journey. My advice is believe in yourself and if the outcome is not what you hoped for, keep going. The first endo I saw was worse than useless and would have made me worse but the second listened and has put me on new treatment.

    One thing I strongly believe is that our attitude influences the outcome and that if we start off with the belief that endos are disinterested even those who are caring may lose heart. If however we go in with a positive attitude of respect and gratitude for the specialist's time and care they respond to us well and are motivated to help.

  • I'm saddened that you've had such a rough time of it. Endocrinologists don't know much about nutrition, but this forum can help you there.. just make sure they give you a full blood profile to include vit D, folate, ferritin and b12.

    What they do know, or at least should know, are the various types of endocrine disorders and some drug interactions. For example, your very low TSH could be down to another illness or perhaps a medication (for the heart??), and it's good that you've finally been referred. The fact that your T4 and T3 are low doesn't correlate properly with an extremely low TSH and will be looked at (by any half decent endo). Your GP was clearly not looking at you, or your middling T4, but going on the TSH alone and that's been the problem. Ideally your endo should treat you as an individual. I always worry when any doctor says, 'The majority of people would do well if we tried this...' Hopefully your endo will take enough interest in you that they'll try to make some sense of it all.

  • Thanks for all your replies it's nice to know I'm not alone.

    I had full blood check about 3 years ago which showed hashimotos, high cholesterol and low iron. I was given diet advice and iron tablets (which made me even more constipated).

    I returned a few months later still feeling awful and asked for another test. She told me I can't keep having blood tests as it costs money and they have a budget to stick to. Finish the course of iron tablets and do more exercise! I could barely get out of bed and had to give up work due to exhaustion.

    I shall go to the endocrinologist with a list of my symptoms and a quiet determination. Thank you all for your help.

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