NHS Endocrinology appointment with results of NHS T3 tests. Are latest bloods in my favour or will they work against me?

[ChronicTonic]

Hi All,

I am hoping to have T3 prescribed on the NHS (aren’t we all?!) or at least to have an understanding Endocrinologist. I am also hoping to increase T3 (See * below)

My new NHS Endocrinologist I saw last month asked for me to take my morning NHS T4 and self-prescribed T3 as usual, then 2-4hrs later have my blood tested to see how the T3 affected me.

I took my usual T3 dose the evening before, and my usual T4 & T3 the next morning. My bloods were taken 4 hours later. These are my results:

Serum free thyroxine 
16.4 pmol/L

Range: 11.1 - 22 pmol/L


Serum free triiodothyronine
 5.6 pmol/L

Range: 3.1 - 6.8 pmol/L

Serum thyroid peroxidase Ab 
<9.0 iu/mL 
Range: 0 - 34 iu/mL 


Serum TSH 

0.01 mu/L

Range: 0.27 - 4.2 mu/L

As expected my TSH is suppressed due to the T3, but how about the rest of my bloods?

The endocrinologist I saw was very stern but actually listened to my T3 plea AND ordered the right tests, so I would love to know how they went.

I am seeing her tomorrow and it would be helpful to know how to defend my position and petition my case. All input gratefully received!

Thanks,

Abi

* Aside 1:

Last year I was asked by a different NHS endocrinologist to decrease my self-prescribed T3 so she could increase my NHS T4.

My thyroid symptoms have increased tenfold since then, and I’m desperate to reinstate my higher T3 dose as, although I didn’t feel great on it, I felt far better than I do now on less T3 and more T4.

Aside 2:

For reference, These were my previous test results on Medichecks the previous month. The new endocrinologist has seen them but wanted to have bloods from her NHS lab that she could monitor properly.

I was taking the same dose of T3 and T4 as now, but didn’t take either before the test:

TSH. Range: 0.27 - 4.2

0.02 mIU/L

Free T3. Range: 3.1 - 6.8

4.1 pmol/L

Free Thyroxine. Range: 12 - 22

12 pmol/L

Thyroglobulin Antibodies. Range: 0 - 115

21.9 kIU/L

Thyroid Peroxidase Antibodies. Range: 0 - 34

9.6 kIU/L

Ferritin. Range: 30 - 150

122 ug/L

B12 Active. Range: 37.5 - 188

54.3 pmol/L

Vit D. Range: 50 - 250

66 nmol/L

(^ I can see my B12 and Vit D is low)

CRP HS. Range: < 3

12.3 mg/L

[TiggerMe Ambassador]

They do this to try and catch your peak which is a bit sneaky as it soon drops off with fT3

Free T4 (fT4) 16.4 pmol/L (11.1 - 22) 48.6%

Free T3 (fT3) 5.6 pmol/L (3.1 - 6.8) 67.6% 

I would think this is giving you a slightly false rise on your fT4 compared to the post 24 hour result of 12, how long before the previous test had you taken your T3 dose and how much?

For me I need to keep my Ft4 above 50% to feel well, it dropped to 24% a few months after adding T3 and I felt awful... even though T3 had made a world of difference

With results like these she ought to be happy enough taking over the T3 prescribing, I managed to get it have already been self treating

Must admit I stick with our testing regime when doing Endo tests regardless of their requests as less likely to be made to reduce... it's just hoop jumping

Personally I'd get on and get you B12 and Vit D up and add a little more T4 which might nudge everything up a little and hope she gives you at least your current dose of T3 🤞

By getting prescriptions filled early once in a while you can get some wiggle room to experiment 🤗

[ChronicTonic in reply to TiggerMe]

Argh! Reply was lost

To summarise: Agree wholeheartedly on everything and thank you for your reply. Most insightful!

[TiggerMe Ambassador in reply to ChronicTonic]

Go get em 🤗

[TiggerMe Ambassador in reply to TiggerMe]

p.s. have you tried taking your T3 as one dose? I've found 15mcg first thing worked better than 25mcg split

[ChronicTonic in reply to TiggerMe]

Wow! Interesting. Used to take it 7am and the. 3pm-6pm but kept forgetting, and when I did remember it was tricky not eating around those hours! Just went for bedtime because it’s easier

[TiggerMe Ambassador in reply to ChronicTonic]

I'd recommend to everyone trying different timings before changing your dose size as it makes a surprising difference, split dosing makes me more tired 🤷‍♀️ and like you say it's a pain to remember 🤗

[ChronicTonic in reply to TiggerMe]

Interesting!

I’m not sure I would have the oomf to get out of bed if I didn’t have some T3 the night before. But I’ll give it a try!

[birkie in reply to TiggerMe]

Hi Eyesore100❤️

I'm interested in this endocrinologist doing the bloods 4 hours after ingesting the thyroid medication, hope you don't mind me asking but I'm seeing the endocrinologist on Dec 27th (full thyroidectomy in 2019)

The reason is mostly because all the thyroid medication I've been on T4 both tablets /liquid and T3 give me awfully stomach /bowle problems (colitis /lactose intolorent).

At a recent visit to a parathyroid surgeon in Liverpool (for primary hyperparathyroidism) she also did thyroid bloods.

Here's how it was done:

First I had no idea she was doing a thyroid blood test, As I was travelling to Liverpool from Cumbria our train was at 5.30am, so I took my 10 micrograms of Roma T3 at 5am I was taking 25micrograms split 10, 10, 5)

The bloods were taken at 10.45am,she called me back a few days later saying I was over medicated as my T3 was 11.4...and my TSH was. 0.25 T4 low due to T3 only.

Range...T3...3.10..6.80

Range..TSH.. 0.30..4.50..

I explained I'd only taken 10 micrograms at 5am

She went on to say she would not have expected my T3 level to be 11.4 (over medicated result) after around 6 hrs, she then reduced my dose to 20micrograms.

After 8 wks I had another thyroid blood test at my surgery and my TSH was now 11.59..range (0.30...4.50)

No T3 bloods taken😠

Same regime as my bloods at Liverpool, no food or drink, only water early morning .

I went ballistic as they didn't do my T3😠 so I demand they do it again as I was on T3 medication.

2Wks later... T3... 4.7...range (3.10.. 6.80)

No TSH done, I had to go with the 11.59 done previously 🤦‍♀️.

But the Liverpool surgeon rang me back to obtain the new results, she said something is going on with you and this medication.

We need to clarify... You had a level of 11.4 T3 in your blood stream at 10.45 after ingesting 10 micrograms at 5am, at what time would you have taken your next 10?

12.30 I said.... So you would probably have a high level of T3 in your bloods stream at 12.30 then your going to take your next 10 pushing your T3 higher.

She then said I need to see the endo, which I am Dec 27th.

But I have no idea how to pitch the stomach /bowle issues let alone this issue of the T3 staying in my blood stream for that length of time🤷‍♀️

The surgeon said one... I could be hypersensitive to it... Or it's pooling in my system not getting into the cells🤦‍♀️.

Sorry for the long post but I'm truly anxious at the thought of this appointment.. And she's actually a diabetes specialist 🤦‍♀️

[TiggerMe Ambassador in reply to birkie]

Hi Birkie 👋

Sounds like the Liverpool 11.4 was a rogue result? Did you ever see a copy of this result... are you sure they weren't looking at the wrong thing? 🙄

How have you been feeling since the dose reduction?

Have you done any private tests to find a pattern?

With you being T3 only 20mcg is a low dose

[birkie in reply to TiggerMe]

Yeah got the results with my primary hyperparathyroidism ones..PTH.. 7.4...range.. 1.60..6.90

CAL...2.65..adj 2.61...range.. 2.10...2.60

Diagnosis... Primary hyperparathyroidism

T3..11.4

TSH.. 0.25.... Over medicated on 10 micrograms 6 hrs after ingestion.

I've got to admit I'd sooner trust Liverpool than my surgery as Liverpool did things by the book

Parathyroid hormone in EDTA purple top tube, drawn before calcium, sent to labs within 3 hrs to also contain magnesium and phosphate.

Did T3, T4, TSH vits and minerals.

Where my surgery are quite bad at taking bloods🤦‍♀️always missing out key tests like they just did... T3 and TSH 2wks apart 🤷‍♀️. Trully I've never felt well on any of the thyroid drugs, I've always felt hyper, sweating buckets, shaking, tremors, heart palpitations, insomnia, fatigue, body pain, headaches the list goes on, but the surgeon in Liverpool is trying to workout which symptoms are due to my primary hyperparathyroidism and my thyroid medication.

I also wee for England, thirsty, have bad vision, these are associated with primary hyperparathyroidism but some can cross over so it's difficult to separate them🤦‍♀️

[TiggerMe Ambassador in reply to birkie]

Hmm.. did anything improve at all with the lower dose?

It's so tricky isn't it with 2 things going on, have you tried skipping a dose? I'm afraid you probably need to guinea pig yourself 🙃

[birkie in reply to TiggerMe]

No... Certainly not the diarrhea, cramping, inflammation in the bowles, I just can't get past 25mg even splitting them and taking it in one go was even worse no elimination in symptoms of what I call hyper, and I know what hyper feels like I was graves thyrotoxicosis in thyroid storm in hospital, I really feel hyper.. This is my dilemma, obviously there must be an absorbtion problem to as I have bad diarrhea, but I know that both T4, T3 (lactose free) don't suit me..Here's why... Every time I take it 10 in the morning with plenty of water I get stomach ache, bubbling noises, acid wash back my stomach feels like it on fire and I feel sick, I wait around 1 1and a half hours then have breakfast and pass it right thru 🤢

I sometimes don't eat especially when I have to go out because I know I'll need the toilet urgently.

I've done everything tried taking it in one go.. At night, split, nothing is working and my bloods are all over the place.

But on a recent F18 pet scan a mass of thyroid tissue was detected (14 x 7 x21) in or next to my thyroid bed, it lit up on the scan (uptake in that area) I was just wondering if it could be producing thyroid hormone perhaps showing a high T3 🤦‍♀️don't know if that is at all possible, but I do known if any thyroid tissue is left it can regenerate 🤷‍♀️

[TiggerMe Ambassador in reply to birkie]

It certainly sounds like you could try skipping it for a day or two and see how that feels, it could well be that your thyroid is fighting back!

Have you tried taking T3 with food as that might help, it isn't as fussy as T4

[birkie in reply to TiggerMe]

🤣 I've done the week off them both T4 and T3 the only symptoms that decrease are the stomach and bowle, no diarrhea, no cramping, inflammation goes, it feels great I've tried it with food to but it's the same as soon as the food hits my stomach I get the gurgling, bubbling, pain cramp then run to the toilet the pain is the worst l can only describe it as the same as contractions during birth😖... But I still have these sweat flafe ups with heart palpitations, tremors, shaking irritability.Hyper symptoms 🤷‍♀️or that's what it feels like,

[TiggerMe Ambassador in reply to birkie]

Where are you with your sex hormones? Have you explored that avenue?

[birkie in reply to TiggerMe]

Post menupausal 62 years old... Both myself and the surgeon in Liverpool discussed the menupause she said maby you could try HRT patches to see if some of the symptoms are elevated by the patch.I got some Evorel 50 patches (Estradiol) 50 micrograms

I'd been having some problems with my left eye so the same day I got these patches off the gp 11am appointment I went home and immediately stuck one on.

I went for the eye appointment at 2.30pm and was told I had blood clots behind my eye with optic disc swelling (obviously this was not due to the patch too soon) but I was diagnosed with thrombosis, clots in my right eye some years previous (eye stroke) and taken off the contraceptive pill and told I probably wouldn't be able to take HRT.

I informed the optician I'd just popped a HRT patch on today, she immediately told me to take it off until I see the eye specialist at the hospital the next day, she said the same take it off.

I went bk on them my choice as these symptoms are awful, I lasted 11 days, no change in symptoms, but on taking the day patch off (change every 4 days)when I was cleaning the area for the next patch I noticed a large bruise where the patch was, right inside that area, I'd not knocked myself and that area is flabby 😌 on my stomach, so I discontinued them until I see hematology, I'm at the eye clinic again today 🙄 don't know if I should mention the bruise or not I've been diagnosed with a eye stroke AGAIN 🤦‍♀️

[TiggerMe Ambassador in reply to birkie]

Oh blimey 🫤 it does make me quite envious of other cultures that treat the whole body... quite tempted to seek out an Ayerveda Practitioner

[birkie in reply to TiggerMe]

I just keep wishing the Aliens would take me and cure me aboard there ship... 😂😂😂😂😂🛸🛸 The fantasy lengths I go to.. 😂😂😂😂

[TiggerMe Ambassador in reply to birkie]

Do you wear a special hat so they can find you easily? 🤣

Oh the bragging rights you shall have 😁

[birkie in reply to TiggerMe]

😂😂😂😂😂🛸🛸🎩 Its like that scene in star trek, where a patient looks dead with a incurable diagnosis, and bones the Dr waves a metal wand over them, and hey presto there back at there post, non the wiser... I want that wand.. 🤣🤣🤣🤣

[TiggerMe Ambassador in reply to birkie]

I hope you aren't saying this out load or they will cart you off to Psychology 😆

[birkie in reply to TiggerMe]

I know... Could you imagine me saying this to my endocrinologist... I'd be on a mental ward before the day was out... And she'd get out of treating me again 🤣🤣🤣🤣🤣🤣

[TiggerMe Ambassador in reply to birkie]

Might be a blessing, she doesn't seem much use 🙃