I wish I hadn’t been referred to an endocrinologist 😒

[Redrosegirlie]

Just seen an endocrinologist for the first time.

I asked the registrar to treat me according to my symptoms rather than my TSH level and he had to think about it for a while before saying I suppose we could consider that.

When I said I am aiming to have a TSH around 1 with FT3 & FT4 in the upper realms of ‘normal’ he said I will then be in danger of being ‘hyperactive’.

Then the consultant came in the room and said that in approx 6 months time he wants me to do a trial of no medication in order to see if I have had temporary thyroiditis and hopefully my thyroid will kick in again and be normal.

This is because prior to diagnosis I had a Hashimoto’s flare with “slightly raised T4 & T3 and low TSH, on 2 occasions I had a mildly tender thyroid area and my TPO antibodies are only slightly elevated”.

I think I could cry 😢

[MissGrace]

In danger of being ‘hyperactive’ - oh lordy - what do they teach these people? This can be added to my long list of ridiculous things endos have said to people on here. My favourites are ‘Levothyroxine is addictive’ (yeah - like crack - we just want more and more...) and NDT is a ‘hippy drug’ (that one kept me laughing for sometime.)

And the consultant is planning to see if you will get ill if he withdraws your meds - is he a sadist? Hashis means your thyroid is being destroyed.

Oh dear.

🤸🏿‍♀️😱

[Redrosegirlie in reply to MissGrace]

Awful isn’t it MissGrace

Let’s see what my blood results are like in 6 months. Then I will argue my case.

[Jazzw]

But your TSH was 26!! I can see that you went overactive first - but you’ve swung so wildly the other way, I seriously doubt it was a case of temporary thyroiditis. Did they ever test your thyroid antibodies?

[Jazzw in reply to Jazzw]

Oh yes, I see that they did, sorry. But they don’t seem to understand how antibodies work, do they??

[Redrosegirlie in reply to Jazzw]

They appear to think about it differently to most on here.

My understanding is (and do please correct me if I am mistaken) a TPO of 38 (0-24) is classed as positive rather than slightly/mildly raised.

My Gp also feels my antibody levels are inconsequential 😒.

[Jazzw in reply to Redrosegirlie]

I feel both your GP and Endo are inconsequential.

Oh, it’s just pants, isn’t it? No wonder so many of us end up self-medicating.

[Redrosegirlie in reply to Jazzw]

I’ve proper laughed at that reply 😂

But yes..... it’s pants

[Jazzw in reply to Redrosegirlie]

Well that’s something

Big hugs Redrosegirlie xx

[Redrosegirlie in reply to Jazzw]

And to you Jazzw 😊

[SlowDragon Administrator]

Your TG antibodies are very high

Obviously you will need bloods retested 6-8 weeks after your recent increase in Levothyroxine

Next step is to consider trying strictly gluten free diet

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

[Redrosegirlie in reply to SlowDragon]

Yes SlowDragon however the endocrinologist today indicated that my TG antibodies meant nothing significant!

He was only considering the TPO result.

I am going to re-test in 6 weeks as my dose has been increased to 100mcg today and I am also having CD blood tests in a couple of weeks so I’ll consider GF after then 😊

[SlowDragon Administrator in reply to Redrosegirlie]

Make sure to eat gluten at every meal until coeliac test

[Redrosegirlie in reply to SlowDragon]

I am. At least twice a day. In the form of very lovely carbs like tiger bread.

However, I am piling on the weight so I can’t wait until the 18th when I am getting my blood taken and I can stop the gluten obsession haha

[knitwitty in reply to Redrosegirlie]

If I were you I'd keep eating the gluten until you get the results of your blood tests because coeliac disease is usually confirmed following a gastroscopy.

If you stop eating gluten rich food and then receive a positive blood test result you will need to reintroduce gluten for about 6 weeks prior to the gastroscopy, it is much easier to detect damage to the cells in the duodenum if you maintain gluten in your diet.

Also if you stop eating the gluten you may start to feel better and be reluctant to begin eating it again prior to a gastroscopy and you may get an unreliable result.

As far as I'm aware, you need a gastroscopy to get a definitive result for coeliac disease as doctors are reluctant to diagnose without one.

You may have to eat gluten for a little while longer but if you do have coeliac disease it would be better in the long run to get a diagnosis written into your medical record.

Good luck I hope it all works out well for you

[Redrosegirlie in reply to knitwitty]

Thank you knitwitty. I hadn’t thought of that

If my blood test result comes back negative for CD I presume I can then go GF? Thanks

[knitwitty in reply to Redrosegirlie]

The blood tests aren't 100% guaranteed but if you get a negative result I doubt your GP would refer you for an endoscopy unless you have significant symptoms of coeliac disease so I would think you could cut out gluten and see if it makes you feel better.

My son had the run around for almost 3 years prior to his diagnosis of coeliac disease and he had every symptom known to man and was still fobbed off by a variety of doctors, we did look into a private gastroscopy but that would have cost around £2 000 , fortunately by then his new doctor was a bit better informed and had him fast tracked on the NHS, following his gastroscopy he went completely GF.

He is on the road to recovery and maintains a GF diet, despite being a student, I hope you find some answers and start to feel better very soon. PM me if you want any information about GF eating or places to get help, Coeliac UK are fantastic for advice and if you join you get a directory listing all foods that are GF in supermarkets, and they cater for anyone who needs to be GF not just coeliacs.

Good luck and best wishes

[Redrosegirlie in reply to knitwitty]

I’m so sorry your son had to go through years of poor care like that 😒 but I’m glad he seems to be getting better now.

And thanks for your offer of being able to PM you about going GF. I probably will do 😀 that is a total minefield!!

[Fruitandnutcase in reply to knitwitty]

That was my problem - I cut out gluten completely without testing when I developed inflammatory arthritis, it massively reduced my thyroid antibodies to the extent that nothing on earth would make me eat gluten containing foods again, the thought of your tiger bread has my mouth watering and after four or five years or however long I’ve beeb GF I still lust for a big fat fluffy fruit scone from my local garden centre.

[knitwitty in reply to Fruitandnutcase]

Forbidden fruit is always the most tempting!!

[Redrosegirlie in reply to Fruitandnutcase]

Honestly Fruiandnutcase you’re not missing too much considering you feel so much healthier being GF 😊

[SilverAvocado]

I suppose one option is just to miss or cancel your next Endo appointment so that you are 'discharged back to your GP'.

The practice of getting people off all hormone to see what their results will be is one of a few strange myths a small number of doctors believe in

[knitwitty in reply to SilverAvocado]

Very strange, it was tentatively suggested by the young doctor I saw in December that maybe I could stop my levothyroxine to see if I was ok without it, so I just asked if it was the department's policy to stop insulin in diabetic patients to see if they were ok.

We agreed that I'd stay on the levo for now!

[SilverAvocado in reply to knitwitty]

We hear about it on the forum occasionally!

Good response

[Redrosegirlie in reply to knitwitty]

Brilliant knitwitty!!

I will use that phrase if I have to

[Redrosegirlie in reply to SilverAvocado]

Yes I could haha. But he will have already written the letter stating his thoughts to my GP.

That will have done the damage

[Kalicocat]

They are idiots if they think antibodies are not important. I had postpartum thyroiditis (with positive antibodies) and went on 50 mcg levo for a number of years. Then I decided to check my antibodies and they had gone back to normal. So I went off of levothyroxine for 3 years and my antibodies remained negative and my thyroid labs were stable. My TSH stayed around 2 to 2.3 which is a little higher than pre-thyroiditis. We checked my antibodies every year, after they became positive again it took approximately 1 to 1 1/2 years before I needed to be medicated again. My TSH was swinging between 2.5 to 1 when it finally went up to 4 and I was feeling horrible. I was then put back on meds. My antibodies have been positive ever since and I have required increased meds ever since. Currently I'm on 75mcg levo and 12 mcg SR T3.

[Redrosegirlie in reply to Kalicocat]

Kalicocat I’m glad you were able to keep a close eye on your levels and treat them as soon as you needed to be treated.

I honestly don’t think I am subacute. I certainly have not just had a baby or a severe viral illness.

I think I have overt hypothyroidism and I will fight tooth and nail to stay on the thyroxine if I need it

[Kalicocat in reply to Redrosegirlie]

That's a good idea, because once you go off and it seems your thyroid is stable and within their crappy range, you will have a TERRIBLE time getting back on levo. So keep up the fight. Especially since you have positive antibodies.

[Redrosegirlie in reply to Kalicocat]

Thanks Kaliocat. You have made me even more determined 😊

[Redrosegirlie]

I need someone to “we need to get your TSH down to 1 etc etc and your T4&T3 up!”