More advice ahead of GP apt pls?

[Arlie123]

Hi everyone, HNY!

Just wanted some advice ahead of a telephone appointment with the GP tomorrow following latest blood results (which they hadn't told me about, just happened to log in and see!).

Quickish summary:

I'm not medicated but after posting results here was advised I have Hashimoto's and have been feeling progressively worse. My TSH has ranged from 2.05 to 6.36, FT4 very low in range or below range and FT3 middle of the range but getting steadily lower, TgAb antibodies ranged from very high to high. I'm working on vitamins and minerals (were all just about in range but getting them higher) and will retest those in January to see where I am. Also will go strictly gluten and dairy free from tomorrow!

Previous GP appointment resulted in no action as I'm deemed to be sub-clinical. This time I went back and said I was trying for a baby (not strictly true) knowing the TSH threshold for that is 2.5. My blood results have come back showing TSH at 2.6 plus some abnormal liver ones suggesting Non Alcoholic Fatty Liver Disease. I know I should have pushed for FT4 and FT3 but I didn't All of my high TSH results and FTs have been done privately, though dr did note TSH's down in last apt.

I'm terrified it's still going to be a wait and see situation and wondering what I should prepare in advance to battle and try and get a trial of treatment.

Any suggestions welcome and gratefully received.

Thanks so much

[greygoose]

The problem is that the NHS would do anything rather than diagnose someone with hypo. So, they make up arbitary rules, like TSH has to be over 10 regardless of the range, and not recognising that high Tg antibodies can indicated Hashi's in the absence of high TPO antibodies.

The truth is, you have Hashi's and you are hypo. TSH jumps around because you have Hashi's, but in real life, you are hypo when your TSH reaches 3, and in some countries you would be treated at that level. Especially with high antibodies.

I honestly don't know what you can say or do to convince your doctor that you need treating. He probably knows nothing about Hashi's, and only goes by the so-called 'guide-lines' on TSH. But, I'll be keeping my fingers crossed for you that you find the right words. Happy - and healthy - New Year.

[Arlie123 in reply to greygoose]

Thanks appreciate the moral support!

[shaws in reply to Arlie123]

O.K. print out the following and say you've had advice from a 'support group'. Print out the following and leave with him/her - they may learn something although they will probably follow the 'advice they are supposed to give' i.e. do not confirm hypothyroidism until the TSH reaches 10 (in other countries we're diagnosed when TSH goes above 3).

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/diagno...

p.s. always get the earliest appointment for a blood test - fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones (if prescribed) and the blood test and take them afterwards. If not prescribed, still get the earliest possible appointment as TSH drops throughout the day.

[Arlie123 in reply to shaws]

Thanks I think I'm going to send her an email/ note with all this plus my bloods etc. Maybe written down she'll change her mind...

[SlowDragon Administrator]

Ask for FULL Thyroid testing...TSH, FT3 and FT4

Plus coeliac blood test....before giving up gluten

Non alcoholic fatty liver disease linked to hypothyroidism

endocrineweb.com/profession...

[Arlie123 in reply to SlowDragon]

Thanks - have been tested for coeliac while still eating gluten. Thanks for link - more ammunition hopefully.

[Arlie123]

Complete pile of ?&*!*. As predicted GP spoke to endocrinologist and has said blood tests came back in range so nothing needs to be done. I pushed back and said my TSH had been out of range several times I wanted to trial treatment due to symptoms but she wouldn't. She said we could order more blood tests to include FTs. Losing the will a bit so have asked her for a referral and will book privately - though can only really afford one appointment maybe two max.

Have been a long supporter of the NHS and still am but feel so let down. And also wondering if I'm a complete hypochondriac / imagining things?!

[shaws in reply to Arlie123]

No you're not imagining things - it is the people who 'dreamed up' how and when' we should be diagnosed by completely ignoring our clinical symptoms altogether.

Before blood tests were introduced along with levothyroxine (T4 alone) we were given a trial of NDT (natural dessicated thyroid hormones) according to our clinical symptoms - No blood tests were invented at that time. If we began to improve we were diagnosed and were on NDT for life.

[SlowDragon Administrator]

Ok

So reading through previous posts

You would be thinking of TTC in near future...therefore guidelines say you should be treated before starting TTC

TSH should be under 2.5.

FT4 is extremely low

See you are already almost lactose free ....it does need to be strictly free to be effective

Be interesting to see if Strictly Gluten free diet reduces symptoms

Getting FULL Thyroid and vitamin testing to see where your vitamin levels are

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

When you say TG antibodies are high....is that high above range?

Have you had thyroid ultrasound scan?

Remember bloods should be tested as early as possible in morning and before eating or drinking anything other than water

Research when within menstrual cycle gives highest TSH

[Arlie123 in reply to SlowDragon]

You would be thinking of TTC in near future...therefore guidelines say you should be treated before starting TTC

TSH should be under 2.5.

That’s what I said to her in the face to face apt. My TSH results came back as 2.6 this time and endo (don’t know who) said it was fine as it is and to come back when pregnant. I did these tests first thing and fasted / no coffee etc. But I wouldn’t really want to get pregnant while not feeling optimal. I’ve got the NICE guidelines handy that I will include in my note to her.

See you are already almost lactose free ....it does need to be strictly free to be effective

Be interesting to see if Strictly Gluten free diet reduces symptoms

Really hope so. I've not been great at sticking to it in the past but am motivated to really try as so desperate! Am doing all the supplements based on a mineral test in June, need to repeat it again now.

When you say TG antibodies are high....is that high above range?

Yes above range. In May they were 945 (range 0-115), in November they were around 194

Have you had thyroid ultrasound scan?

No I’ve not yet. When I went for the face to face appointment before Christmas she said she would arrange one. I’ve not had the letter yet but hoping thi will still go ahead despite what the endo said. She’s also sorting a liver scan as those results were abnormal. She didn’t make the hypo / liver connection but I will include it in my note.

Research when within menstrual cycle gives highest TSH

I read on here that it was mid-cycle so I rushed to do these last ones but I think from the tests I’ve done previously it might actually be beginning for me so will try again and see where I get to. She did say she’d look at private tests which is something I suppose.

[SlowDragon Administrator in reply to Arlie123]

So your TG antibodies are very high so this confirms you have Hashimoto's....but NHS won't diagnose on just high TG antibodies

ncbi.nlm.nih.gov/pubmed/303...