Endo appt results

[Aslangal]

I don’t want to be negative but what a waste of time that appt was! I didn’t see the same Doctor as last time, they STILL didn’t have any details of my RAI treatment so we were still in the dark.

He was a nice enough chap but the same answer to every question was very ambiguous so I’m none then wiser on many fronts.

I had a folder with all my results in it. He kept going by what he could read on the computer.

In short:

B12 300.10 (he says in range so wouldn’t supplement)

TSH 2.14 (you are In range so that’s good)

FT4 25.1

They didn’t have my FT3! I asked him why because that’s pretty important. He was just very vague. 🙄

I asked if I had Hashimoto’s? Answer was no. There are no markers for Hashimoto’s.

With various other vague responses, I got my private test results out. He looked at them and said ‘Oh you might have Hashimoto’s’. Oh for goodness sake! I felt like saying,can I see your qualifications?😂

On to Vit D deficiency. No he wasn’t going to take bloods to check levels after loading dose of 300,000 iu I just finished. Asked why not? Answer was no point. GP will check in a year. I’m now taking a daily dose of 800iu.

He did take bloods to check my thyroid receptors? What does that show?

All in all, an unsatisfactory appt. I must check and see if he is a Diabetes Consultant as opposed to thyroid. I’ve been discharged back to the GP.

On another note, I have a late onset hearing loss and have a Hearing Dog. He seemed more interested in my dog! Not his fault but his accent was very strong and he kept talking to me with his back to me, while reading the computer screen. I gave up saying ‘Sorry - you need to look at me when you speak’. So the whole appt was very disjointed and useless I thought.

🙄

[Aslangal]

... oh and Coeliac Test was negative. I asked if switching to a gluten free diet (or mostly) would be advantageous? His response was ... ‘well??? Maybe? Maybe not? There’s not much evidence it helps.’ 🙄

[greygoose]

He did take bloods to check my thyroid receptors? What does that show?

I've never heard of such a test. What's it called?

Doubtless he was so vague because he knows nothing about it. If they actually know something - or think they do - they can't wait to flash off their knowledge.

[Aslangal in reply to greygoose]

I wrote it down exactly and got him to repeat it ‘Thyroid receptor antibodies’

[SeasideSusie Remembering in reply to Aslangal]

‘Thyroid receptor antibodies’

This is most likely the antibody test used to confirm Graves disease - TSH receptor antibodies (TRAb)

As you had hypo/hyper swings which led to RAI and Hashi's was queried, you know from your private TPO/Tg antibody tests that Hashi's is present as confirmed by the positive results.

B12 300.10 (he says in range so wouldn’t supplement)

It may be in range but plenty of people with B12 in the 300s have been found to need B12 injections.

Go back to my reply to your private test results in this thread: healthunlocked.com/thyroidu...

Your Active B12 result is low enough to warrant testing for B12 deficiency and your folate result confirmed folate deficiency.

On to Vit D deficiency. No he wasn’t going to take bloods to check levels after loading dose of 300,000 iu I just finished. Asked why not? Answer was no point. GP will check in a year. I’m now taking a daily dose of 800iu.

I mentioned in previous reply that NHS rarely retest Vit D and that you should retest this yourself (link given to lab who do fingerprick blood spot test) and that you should come back with new result for further advice on new dose after loading doses were finished. 800 or 1000iu will not be enough, especially for someone who had a level of 24.7nmol/L two months ago.

No surprise it was such a disappointing consultation, if you look him up I'd put money on him being a diabetes specialist.

[Aslangal in reply to SeasideSusie]

Thanks. I rang the Clinic this morning asking for his name as I missed it. I will go back and check those out as you suggested. It’s ridiculous that we don’t get testing we need on the NHS isn’t it? If I take a B12 supplement, is it only injection? Is it dangerous to overdose?

[SeasideSusie Remembering in reply to Aslangal]

If I take a B12 supplement, is it only injection? Is it dangerous to overdose?

Don 't just take a B12 supplement yourself. With your low Active B12 you need testing for B12 deficiency. You may have Pernicious Anaemia. Find out what you're dealing with first. You'll either get B12 injections from your GP or you may be able to self supplement, but you need to do it right.

[Aslangal in reply to SeasideSusie]

I actually asked to be tested for pernicious anaemia and B12 on 26/11 in a letter to GP. My private tests in November showed my B12 active was 45.300 pmol/L (range >37.5)

[SeasideSusie Remembering in reply to Aslangal]

My private tests in November showed my B12 active was 45.300 pmol/L (range >37.5)

Yes I know and this is what I am referring to again.

I said 2 months ago when you posted your results that an Active B12 result below 70 suggests testing for B12 deficiency (link to that thread given above in my previous reply).

If your GP hasn't responded to your request then chase it up and cite the information I gave from Viapath at St Thomas' Hospital who suggest testing at this level - link to Viapath's information also given in that reply linked to above. St Thomas' is an NHS hospital so there's no reason that a GP would reject the suggestion for further testing.

[Aslangal in reply to SeasideSusie]

You know what - I am going to write in with copies of all I have printed off (all that you suggested). If I am having problems getting answers and treatment and I am proactive - what do people get who just take the Dr’s word for it?!

[SeasideSusie Remembering in reply to Aslangal]

what do people get who just take the Dr’s word for it?!

First course of action - Check for signs/symptoms of B12 deficiency and list them if you have any. I gave you a link in my reply in your previous thread. Doctors should take more notice of symptoms than numbers when it comes to B12.

Second course of action - take someone assertive to the appointment with you who will speak up and ask why there is no follow up testing when it's recommended by St Thomas' Hospital.

If no joy the third course of action is to do private testing, Medichecks do the appropriate tests.

[fuchsia-pink]

Go back to your GP and ask to be referred to someone else. Explain that you couldn't hear him properly. You can see ANYONE in the country - so may be worth getting the list from Dionne at thyroid UK to see if there is someone near you who is a bit better - or google all the individual endo biographies at all the hospitals near you to see if anyone actually mentions thyroid rather than just diabetes.

Good luck x

[Aslangal in reply to fuchsia-pink]

Got the list from Dionne but only one Dr near me

[DippyDame]

Sorry you had such an unsatisfactory experience....just proves how little the"professionals" know about the thyroid.

TSH should be close to 1

FT4 without the range means little....different labs use different ranges

Did he check antibodies for Hashi's? If not what "markers" was he referring to.

Vit D

The maintenance dose of 800 IUs is not guaranteed to be enough....and probably isn't.

vitamindsociety.org

B12 -

300.1 is in range but you may benefit from an increase

<145 deficient

145 - 250 insufficient

> 569 consider reducing dose

As for "thyroid receptors" test....never heard of one.

Many people with Hashi's benefit from a gluten free diet. Intolerance is not the same as being allergic.

I'm just another fellow traveller along this long bumpy thyroid road!

Good luck

DD

[Aslangal in reply to DippyDame]

I asked if 1000 iu of Vit D daily would be an optimal target rather than the 800 I’ve been given ... a shrug 🤷‍♂️ of the shoulders and ‘could be’

[SlowDragon Administrator in reply to Aslangal]

On levothyroxine you are almost certainly going to need TSH well under 2.5

Most important test ....FT3 wasn’t done

As you say .....a completely useless appointment

Many of us with hashimoto’s who test ourselves regularly find we need at least 2000-3000iu daily

Endocrinologists frequently know almost zero about the importance of OPTIMAL vitamin levels

They seem disinterested in reading recent research

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

The only way to know is to try strictly gluten free diet for 3-6 months

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

[Aslangal in reply to SlowDragon]

Those articles are brilliant thank you. I have printed them all off for a more in-depth read.

[SlowDragon Administrator in reply to Aslangal]

See your GP for full testing for pernicious anaemia before starting on a good quality daily vitamin B complex

Increase vitamin D supplement

Trying strictly gluten free diet

Get FULL Thyroid And Vitamin testing in say 1-2 months making sure to do blood test as early as possible in morning before eating or drinking anything apart from water ....and last dose Levo 24 hours prior to test

[Aslangal]

Thanks will do