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No luck with endocrinologist, feeling really low

(9 Posts)
Okite Fri 26-May-17 17:58:58

I had Ann appointment this morning with an endo, having had a blood test with slightly raised tsh and raised anti-thyroglobulin antibodies. She's not convinced it's my thyroid. Actually what she said was, I'm not saying it's not thyroid, but we wouldn't treat until your levels are way out of range just to be sure. 😟
She's testing for Addison's disease as well, but I don't have any symptoms of that. It's really depressing, I was pinning hopes on being able to start a trial of thyroxine and hoping to start feeling better.
I feel like the doctors just aren't taking it seriously at all. I don't know what to do next

Pleasemrstweedie Sat 27-May-17 20:20:15

How 'slightly raised' is your TSH?

Okite Sun 28-May-17 08:29:36

4.64 - range goes to 4.3.
She said their upper range is around 7 and they wouldn't treat below that.

Inbetweenus Mon 29-May-17 21:01:01

I think you should be treated as subclinical - SCH. cks.nice.org.uk/hypothyroidism#!scenario:1
Ejen my Tsh was 4.5 and my ft4 wsd 12, i aakwd to be put on a trial of medication. It wss successful and gradually adjusted to make me optimal. I wrote to my endo and asked based on NICE guidelines.
You do need to check your fettitin, vit D, folate and B12 are optimal for best effect.

Inbetweenus Mon 29-May-17 21:02:30

Sorry about typos! Fettitin should be ferritin!

summerson Mon 29-May-17 21:04:52

As I understood it any raised antibodies means hashimotos?

My endo would disagree that 4.something is "slightly raised". I feel on top of the world now I am on thyroxine for prior 4.2 tsh

Okite Mon 29-May-17 22:08:59

It was a hugely frustrating appointment, she was adamant I shouldn't have a trial of thyroxine because it can cause fatigue, breathlessness and heart palpitations...all of which I already have anyway.
She wants me to be tested for Addison's disease, but I don't have any particular symptoms of that. And apart from that, I've just got to wait until my thyroid levels get worse and reach a point at which they'll treat me. In the meantime, living half a life because I'm just too knackered to do anything.

Inbetweenus Tue 30-May-17 08:06:31

Please ask to see another doctor. The symptons are insidious as they creep up and take your life away. When they got my treatment right, it was light someone turned the power back on. If she wants to test you for addisons, that should be done quickly so you don't have to be left in this half life.

aggiebelle Thu 08-Jun-17 01:04:08

Hi I've been hypothyroid for 10 years, I can really relate to your feeling deflated after seeing an unhelpful endocrinologist! It is very hard going when you feel exhausted every day but there is hope! YouTube is a massive source of information and posts from American Functional Chiro's are extremely helpful - dipping in to some will enable you to understand that the established cut offs for tsh may well not detect some cases. I have found Dr Barry Durrant -Peatfield's book very helpful and although a private practioneer he is a staunch advocate of listening to the patient and not just 'treating the labs'. Keep connecting with other sufferers they have walked the talk, they understand what it is to feel so exhausted and have often had to deal with very unhelpful attitudes from doctors/specialists. There are helpful doctors/specialists out there however I saw Dr English at Derreford Plymouth - although your tsh may be fine you may have very high reverse t3 or a problem with your body's conversion of t4 to t3 neither of which show up in standard blood panels. One of the thyroid societies (sorry can't remember which) produces a leaflet on Endocrinologists in the UK, details of the blood screen and gives patient feedback. I really hope this helps - I feel for you!

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