Update 1st endocrinology appointment

[Nikki31uk]

Well mixed feelings really, endo couldn't really tell me what is causing my symptoms. Mainly relied on gp blood tests and as tsh was normal wouldn't do any other blood tests. She did however refer me for thyroid and lymph node scan and has referred me to ENT. She wasn't really interested in my list of symptoms and said they weren't thyroid related 😡. She wanted refer me back to gp but as gp had referred me to her to find the problem I said that wasn't acceptable which is when she referred me for scan. I feel back to square one and in meantime I just feel worse 😞

[Lalatoot]

That's about par for the course with endocrinology. You are in the same limbo as me - endo only looking at blood tests and dismissing other symptoms. At least you got a scan and referral. Mine told me to go to gp and ask for referral to ENT.

[Nikki31uk in reply to Lalatoot]

That is awful so sorry to hear you're in limbo too. Its awful isn't it. Think she only suggested scan and ent due to get rid of me x

[Lalatoot in reply to Nikki31uk]

Mine was a phone consult. The endo has never seen me. She could hear my problem though as all but have lost my voice as a result of the problem. A kind GP told me the endos were only interested in blood results. I might also add that the phone appt was for 3pm. The endo actually called at 10am the following day. No explanation given

[Nikki31uk in reply to Lalatoot]

That is awful. Have you done private blood tests? My gp and endo will only look at tsh

[Lalatoot in reply to Nikki31uk]

The endo and GP do TSH, FT4 and Ft3 - they are obliged too as I am prescribed levothyroxine and liothyronine by them. My hormone levels are good on my current doses. I am happy with the levels. I think the problem is something to do with the actual gland or a cyst or a goitre which swells and gets inflamed.

[Nikki31uk in reply to Lalatoot]

Both endo and gp wouldn't test T4 or T3. I'm still trying to get diagnosis x

[greygoose]

Doctors almost always say that about symptoms, because they don't know what hypo symptoms are. They don't understand that as every single cell in the boy needs thyroid hormones, if there's not enough in the system to go round, symptoms can be just about anything and everything.

Most - perhaps all - endos are diabetes specialists who think hypo is easy to treat: just give levo and get the TSH somewhere back within the range = job done. We all know what a phalacy that is! But they don't. So, when they find that things are still going wrong, instead of looking for the problem, they get rid of the patient by passing them on to someone else. That also equals job done!

What is your TSH result? Have you had FT4 or FT3 tested? Or antibodies?

[Nikki31uk in reply to greygoose]

Tsh was 3.17 and and T4 was 12

[greygoose in reply to Nikki31uk]

OK, so that TSH is not 'normal' by a long chalk! A 'normal' (euthyroid) TSH is around 1, never over 2, and at 3 you are hypo. So, you are still hypo and that's what is causing your symptoms. It's so obvious but...

Can't comment on your FT4 because you haven't given the range, but it looks very low. 12 is often the very bottom of the range.

[Nikki31uk in reply to greygoose]

Think range is 12 to 22 x

[greygoose in reply to Nikki31uk]

Well, then, your FT4 is much, much too low. Should probably be more like 18, but everyone is different, so can't say for sure what would be right for you. Doubt if 12 is high enough for anyone!

[SlowDragon Administrator]

Post from 8 months ago showed dire vitamin levels and thyroid levels, but negative thyroid antibodies

healthunlocked.com/thyroidu...

Ferritin 24.5. 13-150

Magnesium 0.93. 0.7-1.0

Cortisol 521.0 6am - 10am 113-456

Tsh 3.17. 0.27-4.20

Total T4 90.3 66-181

Free t4 12.0. 12.0-22.0

Free T3 4.43. 3.1-6.8

Anti thyroid peroxidase 11. <34

Anti thyroglobulin 11. <115

Vit D 64. 59-175

Vit B12 209. 145-300

Serum folate 17. 8.83-60.8

You were working on improving low vitamin levels by supplementing

More recent post

healthunlocked.com/thyroidu...

Did you get FULL thyroid and vitamins tested again BEFORE seeing endocrinologist?

If not order retest now

Remember to stop taking any supplements that contain biotin a week before all blood tests

Stop iron supplements a week before testing ferritin

Always test thyroid levels as early as possible in morning before eating or drinking anything other than water

At least you are having ultrasound scan

[Nikki31uk in reply to SlowDragon]

Vitamins are all okay for now

[PurpleNails Administrator]

This is typical for endocrinologist…I recently made the point to my endo why bother asking my symptoms again when I’m told they aren’t thyroid related, even though my GP says they must be and they are listed as typical text book symptoms associated with thyroid issues? She persisted I tell her (which I was a bit surprised about) but I think because she sensed I didn’t want to discussing it, It made her want to know. So I repeated some of my concerns & of course she said before I had even finished thats not thyroid related. Even saying - do I understand? and speak to GP for referral to different department…and just to stop me speaking further I got a “do not smoke” lecture even though I have never smoked, ever.

I will say she wrote an update to the GP and the GP used the info on the letter to support the referral….It was the first referral made in months that wasn’t declined.

[Buddy195 Administrator]

How are you getting on with improving key vitamins Nikki31uk?I only started to feel better when these were optimal….. plus following forum advice to go gluten free made a huge difference to me.

[Nikki31uk in reply to Buddy195]

Key vitamins have improved and are fine now after supplementation. Neither gp or endo will look beyond tsh blood result and will not do any other thyroid test x