New results, anyone's thoughts please. - Thyroid UK

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New results, anyone's thoughts please.

knitwitty profile image
10 Replies

I have been taking levothyroxine since around June last year and am currently on 75mcg.

Last December I visited an endocrinologist as blood tests suggested poor conversion from T4 to T3.

My results in December were:

TSH 0.409 (0.27-4.2)

T4 18.5 ( 12-22)

T3 4.77 ( 3.1-6.8)

TG antibodies 374 ( 0-115)

TPO antibodies 11 (0-34)

Todays results

TSH 0.517

T4 18.9 ( 12-22)

T3 4.2 (3.1-6.8)

TG antibodies 329 ( 0-115)

TPO antibodies 11 ( 0-34)

I have been gluten free for around 6 months and I have had a really sore throat and a cough for about a week, so not sure if that will have had any influence on the antibodies.

I was told in December that I could not have T3 on the NHS and told that the antibodies were irrelevant ( I didn't believe that ). Was also told I could see the endo I originally was referred to privately and he would probably prescribe T3 and they would monitor me, or I could buy it off the internet and they would monitor me.

I am seeing my "thyroid friendly" GP on Thursday, she has returned to the practice, thank goodness.

If you were me would you ask her for a private prescription and obtain T3 through a German pharmacy whilst we are still in the EU?

Or am I barking up the wrong tree completely, I still think I am converting poorly, any thoughts would be appreciated. Thank you :)

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10 Replies
RockyPath profile image
RockyPath

You haven't described how you have felt on this hormone replacement protocol, but if I was still having hypothyroid symptoms I would trample my mother to get T3 from whatever source I could, without delay. [That's a borrowed echo of Emily Watson's line in the American theatrical film about Beatrix Potter]

knitwitty profile image
knitwitty in reply to RockyPath

Thanks for you reply, I don't feel very much better to be honest.

I had a hyper hashi swing last year and when my T4 was around 22 and my T3 was 7 I felt better than I have in years, it didn't last long of course as my levels plummeted very quickly, it did however give an inkling of how I should be feeling instead of how crap I had been feeling or a long time.

My T4 has risen quite significantly ( if my memory serves me correctly it was around 11 before treatment and my T3 was about 3) but my T3 much less so.

I don't know how I'll get on with the GP but i thought it was worth a try as she seemed more clued up than anyone else I have seen.

SlowDragon profile image
SlowDragonAdministrator

Absolutely ESSENTIAL to test vitamin D, folate, ferritin and B12 BEFORE considering adding T3

Perhaps ask GP to test vitamins and have a chat about T3 from Germany

If you have clinical need (likely if you have Hashimoto's and are gluten intolerant) then you should be referred to NHS endocrinologist and NHS T3 prescribed

Getting vitamins optimal can help improve conversion of FT4 to FT3

What supplements do you currently take?

please email Dionne at Thyroid Uk for list of recommended thyroid specialists

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Very difficult but not impossible to get T3 on NHS

Some CCG's are worse than others.

What CCG area are you in?

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Debates in parliament

theyworkforyou.com/search/?...

knitwitty profile image
knitwitty in reply to SlowDragon

Thanks for that comprehensive response Slow Dragon.

I have managed to get my Vit D up considerably since I started using the Better you spray.

In Dec Vit D was 90 nmol/L (> 70) it had been around 50 despite taking supplements, eating fish and getting out in the sun a lot last summer.

B12 767 ng/L (200-770) I take a B complex High strength

Folate 15.5 ug/L (3.9-26.8)

I am in Merseyside CCG and I was categorically told they do not prescribe T3 on the NHS.

I had an appointment to see an endo on the Thyroid UK list however he was not in the clinic when I went, but the Dr and more senior endo I did see, (when the first Dr could not answer any of my questions) said the hospital would monitor me on T3 if I obtained it myself on the internet or if I saw the endo I should have seen, privately who would most likely prescribe it for me. This really annoyed me but I felt as though I was up against a brick wall at that point.

I will read all your links tomorrow and print off the relevant ones to take to the GP.

Thank you for taking the trouble to list so much information, it is much appreciated.

Do you think it would be safe for me to take T3 with the above results?

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

See this website - clearly shows Liverpool CCG can and does still prescribe Liothyronine

openprescribing.net/analyse...

B12, folate and vitamin D look good

No ferritin test?

knitwitty profile image
knitwitty in reply to SlowDragon

Hi slow dragon thanks for getting back to me,

They didn't test ferritin but it was 109 (10-291) last April.

My previous T4/T3 levels were as follows. I took these with me when I asked if I could try T3.

7/18 on 25mcg Levo changed to 50 mcg in 8/18

TSH 2.78 (0.27-4.2)

T4 14.4 (12-22)

T3 4 (3.1- 6.8)

9/18 on 50 mcg Levo

TSH 0.85 (0.27- 4.2)

T4 18.7 (12 -22)

T3 4.3 (3.1 - 6.8)

10/18 on 75 mcg Levo following this BT

TSH 1.5 (0.27 - 4.2)

T4 17.2 ( 12 - 22)

T3 3.85 ( 3.1 - 6.8)

12/18 on 75 mcg Levo

TSH 0.409 (0.27 - 4.2)

T4 18.5 (12 - 22)

T3 4.77 (3.1 - 6.8)

3/19 on 75 mcg Levo

TSH 0.52 (0.27 - 4.2)

T4 18.9 (12 -22)

T3 4.2 ( 3.1 -6.8)

The actual wording in the letter following my consultation in December ( which I had to wait almost 8 weeks for and only got it then when my GP's surgery got involved!) was : "I have explained to Mrs **** that biochemically there is no rational ( i think it should have said rationale!) for increasing her Levothyroxine dose at this time. We have also counselled Mrs **** that T3 replacement is not available in this context.

The hospital tested me for coeliac despite me telling them I had been GF for about 6 months but did not test T3 or Thyroid antibodies even though my whole reason for going to the hospital was to ask for T3.

Very frustrating!!

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Then like thousands of others on here you need to get FULL Thyroid and vitamin testing privately as next step

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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

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

Come back with new post once you get results and ranges

Clearly your FT3 is too low at moment

knitwitty profile image
knitwitty in reply to SlowDragon

Thanks again,

Yes I do all my tests first thing in the morning and I don't take levo for 24 hour prior to the test. I have had antibodies tested on a few occasions and my thyroglobulin antibodies have been raised to around the 300- 400 mark (range over 115) TPO antibodies have been around 11 and 15 ( range > 34)

I am seeing the GP tomorrow, based on what you can see from my results do you think I would benefit from T3 or am I barking up the wrong tree completely?

I have spent hundreds of £ already on Medichecks blood tests as the NHS refuses to test anything other than TSH despite the GP requesting other things like antibodies and T3.

I will ask the GP if she will do a full vitamin check and I will probably have to do any TFT's myself in the future.

I don't feel much different to before I started treatment to be honest, when I had the initial increases I did start to feel a little better after about two weeks but the improvements seemed to tail off after 6 weeks on the increased dose.

I don't feel my T3 is improving anywhere near as well as my T4.

As I said earlier in the thread following a hyper/ Hashi swing I felt really well for a couple of weeks when I'm guessing that my T3 was between 6-7 and my T4 around 21.

If I can't get the GP to prescribe T3 privately I am thinking I shall have to go down the self obtaining route so I will be back for more information on that.

SlowDragon profile image
SlowDragonAdministrator in reply to knitwitty

Private prescription enables access to cheap T3 from Germany

Ideally pick a recommended thyroid specialist of thyroid UK list who is both NHS and private. Then can hopefully transfer across assuming initial private T3 trial goes well

knitwitty profile image
knitwitty in reply to SlowDragon

Thanks again for all your help, it is much appreciated:)

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