Hopefully useful observations from first endo meeting

Hi All - thought those with test results similar to mine, horrible symptoms / feel like you're dying, but experiencing non-interest / treatment from their GP, may find my experience today at the endo useful.

- my TSH looks 'normal' but my fT4 and fT3 are right at the bottom of the range:

TSH 0.91 (0.27 - 4.20) IU/L

T4 Total 74.3 (64.5 - 142.0) nmol/L

Free T4 12.23 (12 - 22) pmol/L

Free T3 3.54 (3.1 - 6.8) pmol/L

- I have Hashi antibodies:

Anti-Thyroidperoxidase abs H 131.2 <34 kIU/L

Anti-Thyroglobulin Abs 19.3 <115 kU/L

1. The 'normal' TSH but low fT4 and fT3 may indicate pituitary issues so I've been sent for an MRI on the pituitary.

2. My disturbed sleep and other symptoms may indicate an adrenal issue so a 9am blood cortisol test has been ordered.

3. He sees the Hashi antibodies as a separate strand and may be a hereditary factor as my Dad had a goiter when young.

3. The endo described this as 'central hypothyroidism', previously known as secondary hypothyroidism.

4. He noted that GPs are not trained to diagnose this, and will be unlikely to treat me with this profile. However he is happy to commence treatment, once the pituitary and cortisol tests have been done.

5. He said my ferritin and folate are actually very healthy and indicative of a good diet, even though I'm slightly over range (he said ferritin can go up to 300) and note I have low inflammation:

CRP 1.10 (<5.0) mg/L

Ferritin H 190.4 (20 - 150) ug/L

Serum Folate H 45.40 (10.4 - 42.4) nmol/L

6. However he said my B12 was too low, even though I'm mid-range. As others on here say, it needs to get up to 700:

Vitamin B12 414 (Deficient <140 pmol/L

, sufficient 140 - 250 consider reducing dose >725)

7. He told me to keep a diary of the date/time/activity of the 'hard heart beat' I'm experiencing.

8. On diet, he recommended low carb, low-ish fat, high-ish protein which was interesting.

9. It was an excellent interaction - he was extremely patient, kind and attentive. He seemed very pro-active to get to the bottom of the cause, and also very keen to treat the problem. He agreed that 'wait and see' approach by my GP is not appropriate given that I feel dreadful. He was also dismissive of me being offered anti-depressants and said there is no test for that so he wasn't at all sure why the GP would have reached for that treatment at this point.

10. He was pro-active to save me money - advised shopping around for an MRI and gave me a cheap clinic in London. Said that if I need the drugs privately if my GP won't prescribe then not to worry as they are cheap drugs.

11. All in all a 5* interaction - I felt listened to, understood and that he was motivated to help me feel better. He gave me hope, which can feel like a distant memory as I know you have all experienced.

Hope this is helpful.

9 Replies

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  • So pleased for you. Now moving in right direction.

  • He sounds hopeful. But I disagree with him on the low-ish-fat diet.

    As I understand it, secondary hypo is when the fault lies with the pituitary, and tertiary hypo when the fault is with the hypothalamus. Central hypo is a term that covers the two, when you don't know which one it is, just meaning that it's not the thyroid gland at fault. None of this has anything to do with Hashi's. Hashi's is where the immune system destroys the thyroid gland. :)

  • Thank you greygoose, that is a concise summary of what he said. I think he intended the pituitary / cortisol tests to sharpen the diagnosis. Agree, he saw the Hashi's as a separate issue.

    Yes I was surprised at the low-ish fat comment, and I certainly blame my high carb / high sugar / low fat / high exercise previous existence as contributing to my current health woes.

  • OK, but if the pituitary tests don't come up trumps, don't let him forget the hypothalamus. :)

    Your high carb ect. diet won't have contributed to your Hashi's, although it's not the healthiest of diets. But the high exercise will have temporarily left you with very low T3.

  • Hi greygoose, isn't the cortisol test aimed at testing disturbance in the hypothalamus-pituitary-adrenal axis? Or is there another aspect to the hypothalamus that I haven't picked up on? Many thanks.

  • The 8/9 am serum cortisol test - if that's what it is - only tests how much cortisol you have in your blood at that particular time. I don't think it gives you any information on the HPA axis.

    I'm afraid I don't know much about the hypothalamus, except that it stimulates the pituitary to secret TSH. But I do know that you can have high or low cortisol without it having any bearing on the hypothalamus.

  • Got it right...thank you. I'll try to ensure we dig into this to get to the root cause and will let you know if I glean anything useful. I'll also have a read around, sounds interesting.

  • I'm so pleased it went so well for you richar03

    Depending how things go with your cortisol test, there is always the 24hour saliva adrenal stress test done through Genova Diagnostics which is a more detailed test but sadly not done by NHS doctors.

    Can you email louise.roberts@thyroiduk.org.uk and let her have details so she can add him to the list of thyroid friendly endos which gets sent out to members who request suggestions for a good endo.

  • Hello SeasideSusie, thank you for your kindness and suggestion re the saliva adrenal stress test. I'll follow that up if necessary. Yes I will contact Louise Roberts now with my info.

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