Please review as want to visit endo armed!! - Thyroid UK

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Please review as want to visit endo armed!!

richard123 profile image
5 Replies

Hi I am seeing an endo in Monday with

results as follows

Tsh 3.80 range 0.5-4.0

T4 16 unsure of range

Tpo antibodies 887 range 0-39

I am symptomatic tiredness, weight gain puffy

Am I wasting my time going for appointment as I note

Hashimotos with high antibodies and normal tsh

Is rarely treated

Thanks for input..

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richard123
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5 Replies
Moggie profile image
Moggie

No I don't think you are wasting your time at all. Your TSH is to high at 3.8 and needs to be treated. You condition will only get worse without treatment as your body will continue to attack your thyroid.

It will all depend on what endo you see and what his views on TSH ranges are - its clear you are at the top of the range but if he is a "your in range" sort of endo then you'll have to battle to get treatment.

My TSH was 2.36 not so long ago as my meds were reduced and my endo told me this was fine. I looked at him like he was mad and almost told him so "fine, what do you mean fine. I have every hypo symptom in the book and your telling me I'm fine. No sorry not having that, my TSH needs to be under one for me to feel anything like normal" He didn't say much to this and went on to another subject. Ten minutes later he said "well your TSH is a little high so lets increase your meds" - I just smiled but I know if I hadn't stuck up for myself I would have gotten nowhere.

What I'm saying to you is that you may have to fight for what you want. You know how ill you are feeling, you know that with high antibodies that your condition will only get worse and you know what you need treatment so be prepared to fight for it.

Do as much research as you can, if you don't understand something ask questions on here until you do and go to the appt with a positive and determined attitude.

Did your GP refer you to an endo or is this a private appt?

Moggie x

richard123 profile image
richard123 in reply to Moggie

Thank you for your reply, Gp referred me only as I said I had strong family

history. She said I doubt they will treat you but because I can't answer your questions I will refer you! I'm going to the homerton hospital east london.

Moggie profile image
Moggie in reply to richard123

Good for your GP - that's rare in itself but I cant understand why she didn't start you on treatment herself. She is obviously not willing or able to start you on treatment whilst you TSH is still, only just, in range.

With a strong family history, high antibodies and high TSH I don't know what more evidence your endo would want to start treatment. If I remember rightly the earlier you have your TSH test done in the day the higher the reading will be so maybe remember that for next time - always book an early appt for bloods and your TSH will be higher - which will help your cause. If I've got that wrong I'll come back to you or someone else may correct me. Can you remember what time you had your bloods done?

I can only stress again that you may need to fight your corner and maybe, IF he/she refuses treatment, ask how ill you will have to become before he/she will consider it.

Ask the endo to test your B12, vitD, iron and ferritin for you as these can often be low. That may be easier said than done as different endo's again have different views on testing. My endo has thrown ever test under the sun at me but others on here have reported that their endo's refuse, but if you don't ask you don't get - mention that you have heard that people with this illness/high antibodies can be low in the above and that is why you are asking for them.

You may be pleasantly surprised and the endo might know the obvious - if he doesn't treat you now you'll only be back with 6 or 12 months - and start you on treatment straight away.

Do as much research on the condition as you can so that you can hold your own with him and you'll be fine.

Good luck and let us know how it went.

Moggie x

richard123 profile image
richard123

Hi I had this blood test at 9am previous test at 8.30 3 mths

Ago and it was 4.1 so earlier the better seems right.

About 10 yrs ago I had a thyroid test and it was 0.3

Dr said he would treat and I said no I felt fine had loads of

Energy was always really slim but now I'm sluggish and have gained

A stone and a half in 18mths Gp says its my age! 40 anyway will post

How it went with endo.

Thank you

Cinnamon profile image
Cinnamon

My suggestion would be do a couple of sheets of info for the endo. Test result history, any relevant medical history, family history if any, plus tests you think would be useful (and go the full monty on this -- anything you think would be of use, eg, adrenal insufficiency, B12, Vit D).

I did this for my endo visit (2 sheets) and not only did I get everything I wanted out of the visit, she commented on the usefulness of the info in her letter to my GP (I think the NHS computer files of our results are incredibly hard to read through).

I do think the endo I saw was more responsive than many people have written about here, but it is still worth the effort. Oh, and she was 'happy' with a TSH of 0.45. My GP would have wanted to keep it more to middle of range. I feel much better with this level.

Good wishes.

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