endocrinologist

[Loud22]

so finally get to see someone after14 months after having my thyroid removed so I have questions but need help what blood tests to ask for What should your levels be to be right as am all over the place with side affects Just need guiding

Side affects

Burning chest after meds

Sick feeling

Dizzy

Burning feet

Burning hands

Dry flaky skin

Hair loss

Brain fog

Heart racing out my chest

Sad depressed

Massive weight gain

Throat feels like something stuck in it

Teeth moving

Jaw clicking

Dry gritty eyes

Over heating

I think that I have had hasimotos for 30 years never picked then cancer I think my body is not converting t4 to t3 at all as stomach it off just need to go in with the right questions to hopefully get the right help Thank you everyone this group is a life line xxxx

[PurpleNails Administrator]

Do test show you don’t convert? 

I see you posted some TSH & FT4 tests in last post.  but you need full testing to really know.   

The TSH is low which may be by design - to suppress any thyroid remnants.  

The FT4 would be height if range but not over. So we need the range.

Most symptoms are from  if you have the right FT3.  

If GP/specialist/ lab can’t/won’t test can you manage to arrange private? 

Nutrient testing would be good too. If you can show you have low FT3 with poor nutrients contributing make a case for T3 replacement. 

Having the evidence to support your theory of low FT3 is often the only way others have made progress.  

If the results were emailed, they can’t be trusted - always obtain printed copies with ranges or copies taken from online access to results. Even the most well intended makes typing errors.

[Loud22 in reply to PurpleNails]

thank you will hopefully try get them to do these tests if not I will pay thank you so much

[Jaydee1507 Administrator]

Some of your symptoms may be due to not being on an optimal thyroid replacement dose but others due to low vitamin levels. Hypo people have low stomach acid which causes malabsorption of nutrients.

You would get faster and better results from your Endo appointment by having private tests done to take with you.

You need a standard set of thyroid labs: TSH, FT4 & FT3, also ferritin, folate, B12 and D3.

[Loud22 in reply to Jaydee1507]

yes I think I have low acid as when I eat very small amount it sits in my chest for most of the day x

[pennyannie]

Hey there again :

Is this endocrinologist through your doctor and NHS and when is the appointment ?

If the referral is through your doctor ask if they are running a full thyroid panel in preparation and on the instructions of the endo you are seeing as obviously this will save save time.

The minimum they should run is a TSH Free T3 and Free T4.as I doubt you'll get the vitamins and minerals run as well, but you could try.

The alternative is to run a full thyroid panel including the vitamins and minerals as advised on your first post and then post the results and ranges on here and you will be talked through what it all means and be advised on what questions to ask the endocrinologist. at appointment.

The NHS are not obliged to accept private blood tests - but it's best to go prepared with questions and some facts and figures that likely substantiate your unwellness which they can look at as well as discuss your symptoms.

Do you know how to find your original post ?

[Loud22 in reply to pennyannie]

it’s at the cancer specialist hospital as the hospital by me was not great hopefully I can get them to do the test if not will pay see if they will accept them xx

[pennyannie in reply to Loud22]

Well just a thought - if there is time to run the full panel before the appointment and you post the results and ranges on here before hand we can then advise of the questions you need to asl.

There are a list of the private blood companies recommended on the Thyroid Uk website thyroiduk.org - some offer a home nurse visit so probably the less stressful way, and I get my results within the week is I have Monday / Tuesday blood draw - just depends if you want advice on results before you see the endocrinologist.

[Buddy195 Administrator]

To alleviate the dry gritty eyes use preservative free drops liberally such as HycoSan or Hyloforte.

[Loud22 in reply to Buddy195]

thank u will get some today x

[SlowDragon Administrator]

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Are you currently taking any vitamin supplements

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

STRONGLY Recommend you get FULL Thyroid and vitamin testing done yourself privately BEFORE consultation if GP can’t/won’t do all tests

Can be waste of consultation if you don’t have full test results to take with you

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning.

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Loud22 in reply to SlowDragon]

hi I have tried different brands north star accord alums all feel the same am on 125 mon to fri 150 sat sun this endo is at the cancer specialist hospital I have managed to get it all there as the other in my normal hospital was not to good I take. B12 liquid D3 liquid magnesium pill vit c pill Viridian brand or vimergy there the only brand I use thyroid med first thing and it’s at night before bed. Xx

[SlowDragon Administrator in reply to Loud22]

Test thyroid levels early Monday or Tuesday morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Suggest day before test is 125mcg dose ….so test on a Tuesday

Watch out for postal strikes

Waste of your time to turn up at consultation without getting full thyroid and vitamin testing done before hand

Don’t expect hospital to do full testing….very unlikely to

Essential to test folate, B12 and ferritin at least annually

Test vitamin D twice year when supplementing

[Batty1]

I had my thyroid removed (cancer) 6 years ago and I had all your same issues you listed except for burning chest … I was having burning feet and hands was diagnosed with small fiber neuropathy (no cause) one day it just disappeared no idea why had it for 4 years and the weight gain is horrible and only thing Im told is cut back on eating as somehow its my fault that Im gaining weight breathing…. I will be very interested to hear what your Endo has to say and it’s awful you had to wait 14 months.

[samaja]

IT's also useful to do the saliva cortisol test as a lot of these symptoms might be due to cortisol too. Your endo will not accept these most likely but it's one of the basic tests to do whether you are on levo or T3 or anything else as poor adrenal function really impacts thyroid meds.