Update on Endo appointment

[Sweetpea1157]

Have received a call from the hospital today and am seeing an Endocrinologist tomorrow ( 8/2/19) , but not holding up much hope as unfortunately it's an NHS endo , can anyone please advise me as to what I should be asking or telling the endo please .

[SlowDragon Administrator]

Sorry you didn't get any replies, this is very busy forum

Hope the consultation went ok?

Was this a recommended endo off the Thyroid UK List?

Perhaps write a new post, once you get blood test results etc from endo

[Sweetpea1157 in reply to SlowDragon]

Hi Slowdragon , not to worry , we know this forum is very busy .

As for seeing endo , not sure if he's on the list , not checked , but don't think it went as well as expected, this was an NHS endo, refered to by gp .

He never done any examinations , and never took a single drop of blood , he was basing everything on blood tests I had had done several months ago . He also said that my symptoms were nothing to do with my thyroid ( even though they are very similar to what I suffered 11yrs ago ) ie swelling , lumps in neck , very fatigued , full body totally aches all the time , hair breaking off , changeable appetite, very sore , gritty , puffy eyes , always catching colds which take up to 2 weeks at a time to get better and they always knock me for 6 , and that's only a few of the symptoms, he just wasn't interested, he just kept saying it's nothing to do with my thyroid , so obviously been left totally taken aback by this , though he has said he is going to give me a 2 month trial of T3,

That will be 20mcg a day along with 50mcg levothyroxine. Am very sceptical , especially as he kept on emphasising that this drug is very expensive .

We have read on the forum about Dr Anthony Toft , and are wondering if it would be worth while trying to get an appointment to see him , what do you think ??

Any feedback would be greatfully received

[SlowDragon Administrator in reply to Sweetpea1157]

BEFORE starting on any T3 absolutely essential to get FULL Thyroid and vitamin testing

Getting vitamins optimal is essential FIRST

Do you have Hashimoto's? Diagnosed by high thyroid antibodies

If so are you on strictly gluten free diet

How much Levothyroxine are you currently taking?

I would recommend starting T3 very slowly. 2 x 5mcg or even 2 x 2.5mcg. Sticking on 2 x 5mcg for 6 weeks then full Thyroid blood tests

T3 tablets are fairly easy to cut into 1/4 or even 1/8th using sharp craft scalpel knife

[SlowDragon Administrator]

Previous test results

healthunlocked.com/thyroidu...

FT3 clearly too Low

B12 was too low

Folate borderline

Ferritin too low

Vitamin D marginal

Looking to supplement a good quality daily vitamin b complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D supplementing to bring up to around 100nmol

Ferritin, your GP should be running iron panel to see if iron is also low

Eating liver or liver pate once a week plus other iron rich foods plus daily vitamin c to improve absorption

Selenium supplements can help improve conversion of FT4 to FT3 too

[SlowDragon Administrator]

Your GP could have increased Levothyroxine to 100mcg on past test results. Your FT4 was only half way in range

You also need TG antibodies tested

Personally I would get full private testing first

Depends on results, but if FT4 similar to previous test, I wouldn't reduce Levo, or certainly only to 75mcg daily. FT4 wasn't very high in range. Reducing Levo will just drop FT4 too low

Then endo is likely setting you up to fail on T3 test

Bloods should be retested 6-8 weeks after any change in dose

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

If/when also on T3, make sure to take last dose 8-12 hours prior to test

So perhaps reducing Levo to 74mcg daily, adding in 2 x 5mcg T3 (waking and mid afternoon)

Assuming goes ok, .......look to adding 3rd 5mcg dose of T3

Some of us find 3 split doses per day, waking, mid afternoon and bedtime (8 hours gap) works well.

Personally I now take 10mcg waking, 5mcg mid afternoon and bedtime, plus 112mcg Levothyroxine at bedtime. Vitamins optimal and strictly gluten free diet. Tested positive for DIO2 gene variation. More on my profile

Others can manage 2 x 10mcg dose (12 hours apart). I tried it, found couldn't tolerate it

[Sweetpea1157 in reply to SlowDragon]

Hi SlowDragon, thx for getting back to me . I agree with you , i think it would be silly for me to start T3 without proper blood tests being carried out first , so i have booked an appointment with a private endo for tomorrow midday, which I am paying for myself .I have self increased my levothyroxine to 100mcg daily and am stopping K2 and B12 till after blood tests .

As for the question you asked " do I have hashimotos? " to be honest I don't have a scoobies, never been told or explained to me , just know i have graves . I was only told this quite sometime after my RAI , but as said , no one sat me down and took the time to explain it to me , being nieve at the time , thought docs knew what they were doing , so just got on with it perhaps putting too much trust in them . And also , no , I am not on a gluten free diet , but do try and eat some gluten-free products at times , and generally cook my meals from scratch , so i know what's in them .

Can you possibly advise me as to what I should be looking for or asking for from this private endo please , also , I will be fasting , but would it be safe for me to have my breckie ?

Thanks for your help SlowDragon

Hope to hear from you soon ☺

[SlowDragon Administrator in reply to Sweetpea1157]

Vast majority on here just get full private blood tests direct with Medichecks or Blue Horizon

You may find endo won't test everything

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Many people with Graves or Hashimoto's find STRICTLY gluten free diet helps or is essential

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

But many medics are dismissive of diet connection

As your appointment isn't early morning, suggest you eat breakfast as normal

Next time just get private blood tests direct with Medichecks, Blue Horizon or Thriva

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw or a nurse visit at home

Ideally testing before 9am,

Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Sweetpea1157 in reply to SlowDragon]

Thanks once again for getting back to me SlowDragon , will look into the diy blood tests next time , definitely think it would be cheaper than this endo consultation .

Am beginning to pick up a bit more on here information wise . Am still trying to find a good book that is not too heavy reading and easy to understand .

Thanks once again to yourself and this forum , i am learning more and more all the time , and my eyes are being opened quite a bit to the treatment we all recieve , which in this day and age , is very sad , anyway , will be in touch when I hopefugly get some answers from endo

Thanks again ☺

[Sweetpea1157 in reply to Sweetpea1157]

Hi slowdragon, dont know if you've been keeping up to date with my recent posts but as promised here's the update : Don't think all went as well as i had hoped , the only information I managed to get from him is as follows :- 1 , he thinks the thyroid was not completely destroyed by RAI as i was started on levothyroxine too quickly after procedure, and 2 , the only blood results he has given me ( which don't include any ranges ) were , free T4 and T3 were satisfactory at 14.6 and 4.4 pmol/l respectively . Serum TSH was low but detectable at 0.104mU/l . The TSH receptor antibody was not detected and this is reassuring . So annual testing is all that is required . Those were his exact words , and to think that is going to cost me over £300 , well i guess we all learn by our mistakes eh ?? 😕

[Sweetpea1157 in reply to SlowDragon]

Hi slowdragon , it's me again , would there be any chance you could have a look at the reply I just sent greygoose and get back to me with some advice please . Thankyou