First Timer. Please be Gentle

[Yarn_]

Hi there,

I shall apologies in advance that this is a long post.

To summarise my journey so far.......

30th September 2022

Health assistant, blood pressure and EKG tests. Pulse rate 102, BP 120/80, EKG Normal. Told stress effects our bodies and to be kind to myself. When I pointed out that this is most possibly the most stress free period of my life, I was told that she could hear the stress in my voice; this from someone I’ve never spoken to before.

6th October 2022

Managed to get an appointment to see a doctor, symptoms hadn’t improved and that I’s lost 17lbs in weight since May 2022.

Pulse rate 102, BP 140/90, EKG Normal

Blood Tests requested

7th October 2022

TSH 0.01 mIU/L (0.35 - 4.94) -7.4%

Free T4 (fT4) 13.4 pmol/L (9 - 19.1) 43.6%

Free T3 (fT3) 5.7 pmol/L (2.4 - 6) 91.7%

T4:T3 Ratio 2.351 

Folate - Serum 9.8 ug/L (3.1 - 20.5) 38.5%

Vitamin B12 (active) 55.7 nmol/L (≥ 34)

Ferritin 71 ug/L (23 - 300) 17.3%

ALP 148 u/L (30 - 130) 118.0%

GGT 43 u/L (9 - 36) 125.9%

11TH October 2022

Diagnosed as Sub-clinical Hyperthyroid. Doctors would normally have prescribed Beta Blockers but can’t as I’m Asthmatic, so prescribed Carbimazole 20mg per day

3rd November 2022

I received a letter sent from Hospital to GP reducing dose to 10mg. GP Surgery never contacted me to advise of this. Good job I’d been cc’d in.

Mother-in-law died this evening; okay I have some stress now.

Originally symptoms no longer an issue, but developing a whole new set of symptoms, including issues with balance.

22nd November 2022

Blood Test – Not tested for T4 or T3

TSH 20.52 mIU/L (0.35 - 4.94) 439.4%

ALP 158 u/L (30 - 130) 128.0%

GGT 107 u/L (9 - 36) 363.0%

1st December 2022

Blood retested, requested by GP Surgery.

TSH 23.19 mIU/L (0.35 - 4.94) 497.6%

Free T4 (fT4) 7.5 pmol/L (9 - 19.1) -14.9%

Developed central chest pain when moving. Not high on pain threshold, but enough for me to contact surgery, to discuss all these extra symptoms. (No other signs of heart issues). Told to go to A&E instead. Outcome – Heart fine, but A&E doctor concerned about my balance issues and advises I need to go to GP surgery with them

A&E Blood Test taken at 17:45

TSH 32.5 mIU/L (0.27 - 4.2) 820.1%

Free T4 (fT4) 4.6 pmol/L (12 - 22) -74.0%

ALP 142 u/L (3 - 130) 109.4%

2nd December 2022

Saw a different doctor at the GP surgery.

He thought it may be orthostatic hypertension, but it turns out my blood pressure was going up when standing and not the expected down.

Was offered travel sickness pills to help but was also told that they’d possibly have unwelcome side effects, so declined. Now holding out for Hospital appointment.

5th December 2022

Telephone consulate with doctor at surgery. Was told that 10mg is the lowest dose of Carbimazole and therefore to stop taking them. By this point I was feeling so rough, I didn’t even think about it and stopped (they’re 5mg pills, how is 10mg the lowest dose).

Tried to discuss the possibility of auto-immune and he agreed to antibody blood test.

12th December 2022

Thyroid Peroxidase Antibodies (TPO) 13.2 IU/mL (≤ 34)

ALP 147 u/L (30 - 130) 117.0%

GGT 57 u/L (9 - 36) 177.8%

Only tested for TPO and liver function. At this point I would like to mention I drink about 3 glasses of alcohol a year if that, so liver function is not alcohol related.

18th January 2023

Blood test requested by Hospital for first consultation on 20th January (this has been moved from in person to be telephone).

TSH 5.05 mIU/L (0.27 - 4.2) 121.6%

Free T4 (fT4) 11.0 pmol/L (12 - 22) -10.0%

Free T3 (fT3) 6.1 pmol/L (3.1 - 6.8) 81.1%

T4:T3 Ratio 1.803 

Questions: -

How long does it take for thyroid level to return to personal normal after stopping carbimazole?

Is it usual for T3 levels to be a higher percentage than T4?

Thank you for your patience and any advise.

[pennyannie]

Hello Yarn :

So, just a few things :

There is more than one thyroid antibody and if there is no obvious swelling in the thyroid area and you have no additional breathing or swallowing issues when eating - you could have a 'thyroid hyper ' nodule causing this disparity between your T3 and T4 or you could have one of two autoimmune health issues - Hashimoto's - thyroid AI disease or Graves an AI disease that tends to be diagnosed when it starts to attack the eyes and or thyroid.

It just seems to me that you have been left too long on this 10 mcg dose of Carbimazole as this anti thyroid drug simply blocks your new daily hormone production.

Taken over any length of time this drug will distort your Free T3 and Free T4 readings and needs regular titration of dose as your T3 and T4 levels must not fall too far through the ranges as then your are likely to experience the equally disabling symptoms of hypothyroidism.

I think the lowest dose of Carbimazloe is a 5mcg tablet -

but many people cut this dose in half or quarters as they need just a daily smidgeon to alleviate any untoward symptom while they wait for their immune system response to calm down if an Auto Immune Disease has been diagnosed.

Sometimes patients are prescribed an AT drug, just to ' buy time ' while waiting on further, medical investigations:

Have you had a thyroid scan ?

Have you asked for the other thyroid affecting antibodies to be run TgAB : TR ab : TSI : ?

P.S. Generally speaking ' healthy results ' would express as a higher Free T4 to Free T3. and roughly around a 1/ 3.50-4.50 ratio T3/T4 once the T4 reading was up in the top quadrant of its range.

[Yarn_ in reply to pennyannie]

Thank you for the reply.

All I've had to date is blood tests and more blood tests. It's really hard to actually see someone at the doctors surgery and although the GP Registrar I saw in person in October is very sympathetic and enthusiastic, I get the feeling that thyroid knowledge is minimal. So have been holding out for the referral appointment.

Referral appointment with the hospital is tomorrow and that's been changed to a telephone appointment

I will ask tomorrow about further antibody tests and scans.

Thank you

[PurpleNails Administrator]

Welcome to forum.

Wow, sorry you are having such a terrible time.  - from health assistants who can diagnose you from -how you sound- to doctors not knowing 5mg carbimazole is lowest dose, or having the imagination to take every other day for example - your treatment has not been good. 

Your original results in October which prompted “sub clinical hyper” diagnosis was based on low TSH - your thyroid level were not over range.

A repeat test with antibodies including TSI & TRab (Graves antibodies) would have been appropriate.  Not immediate carbimazole & not at 20mg.  This is probably why hospital reduced it.  

Carbimazole halt’s production of NEW hormone.  It works within hours but the alteration to levels can be affected longer (up to 8 weeks) hormone that wasn’t made might cause levels to be lower for this long.  

Once your in range FT4 & FT3 level were “used up” they crashed down - causing you to be hypothyroid causing a whole new set of symptoms.   This occurred within a month so quickly, your natural level may have been “diving” 

TSH was 20.52 mIU/L (0.35 - 4.94). - Carbimazole should have been completely stopped. 

Usually replacement is started for those with TSH over 10 this is deem overt hypothyroidism.   Once carbimazole has been stopped levels should gradually rise.

By December your results show this  - with under range FT4

TSH 23.19 mIU/L (0.35 - 4.94) 497.6%

Free T4 (fT4) 7.5 pmol/L (9 - 19.1) -14.9%

&

TSH 32.5 mIU/L (0.27 - 4.2) 820.1%

Free T4 (fT4) 4.6 pmol/L (12 - 22) -74.0% (You must be feeling terrible) 

Recent results still show over range TSH, very low FT4 but high FT3

TSH 5.05 mIU/L (0.27 - 4.2) 121.6%

Free T4 (fT4) 11.0 pmol/L (12 - 22) -10.0%

Free T3 (fT3) 6.1 pmol/L (3.1 - 6.8) 81.1%

Thyroid Peroxidase Antibodies (TPO) 13.2 IU/mL (≤ 34) negative, you need TGab tested.  

NHS only test of TPO positive.  

Is it unusual for T3 levels to be a higher percentage than T4, But this can occur with autoimmune & if the body is prioritising FT3 reserves to “keep you going”.

If doctors suggest carbimazole again insist of establishing the cause of hyper & confirm if it transient or continuous. Further thyroid antibody would be a start.

TGab (Thyroglobulin antibodies)

Thyroid-Stimulating Immunoglobulin (TSI)

 TSH receptor antibodies (TRAb) 

[Yarn_ in reply to PurpleNails]

Thank you for the reply.

I think I shall certainly be discussing establishing a cause and the further antibody tests.

As it's been 6 weeks since I stopped the Carbimazole, Would it be worth asking for another TFT in a couple of weeks time before any treatment?

I've been reading this forum for a couple of months now and even though this is the first post I've made, it's helped massively to know it's not been me losing the plot.

[PurpleNails Administrator in reply to Yarn_]

Yes, test in another 2 weeks.  

This will mean your levels are natural with not after affect of carbimazole.

Try and ensure you have TPO & TGab tested & FT3 as well as TSH, FT4 & key nutrients. 

 A full test in 1 go will be best way to make progress.  Arrange privately if necessary.

You included lots of information in post, I could tell you had learnt lots already, but sometimes you need fresh eyes on the information & some support confirming you’re on the right track.

I always found telephone consultant more convenient than visiting a hospital  but I did have a first initial face to face.   

They usually have nurse weigh & take BP. So they will be going by previous results.  

They may ask regarding symptoms, but they really want a short 1 line answer.  When I’ve tried to list all my concerns before, they’ve cut me short - so  start with the most serious eg quite a few the most troubling……and say how you are affected, not the symptom.  If you are fatigued say, I’m am falling asleep during day.  I think they like the clues not the answer.  I once said I didn’t want to discuss my symptoms, they are the same as always & they are always put down to thyroid.  I never been so pressed for details! ….. basically they have usually decided how you are & what treatment is planned, based on blood test results. 

Hopefully you will have someone helpful & knowledgeable, but be prepared for a less than thorough appointment.  If you have aims - list them top to bottom.  They are experts at breezing over things you want to discuss.  

[Yarn_ in reply to PurpleNails]

Thank you again. Really helpful to have an approach for tomorrow, instead of relying on the consultant to lead it all.

As I mentioned in another reply, reading the posts on here have been most helpful at an emotional level.

[SlowDragon Administrator]

Autoimmune HYPOthyroid disease (also called Hashimoto’s) frequently starts with transient hyperthyroid results and symptoms

Your October results are typical early stage Hashimoto’s

Carbimazole was not correct treatment for Hashimoto’s

Carbimazole should only be prescribed if you have Graves’ disease - autoimmune HYPERthyroid disease. This should have been tested for TSI or Trab antibodies tested

So your initial transient hyperthyroid results rapidly switched to very hypothyroid

This would most likely have happened anyway but inappropriately prescribing Carbimazole exacerbated situation

There are two thyroid antibodies implicated in Hashimoto’s.

TPO and Thyroglobulin (TG) antibodies

Significant minority of Hashimoto’s patients only have high TG antibodies

NHS refuses to test TG antibodies unless TPO antibodies are high

Suggest you request endocrinologist test Thyroglobulin antibodies and organise an ultrasound scan of thyroid

And TSI or Trab antibodies tested for Graves’ disease

Also request vitamin D, folate, B12 and full iron panel test including ferritin

And coeliac blood test

If endocrinologist is unhelpful (most are diabetes specialists)

get FULL thyroid test done privately 6-8 weeks after stopping Carbimazole

all thyroid blood tests early morning, ideally just before 9am

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...

Only do private testing early Monday or Tuesday morning. 

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

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[Yarn_ in reply to SlowDragon]

Thank you also for the reply.

I certainly have a few things to be discussing and requesting tomorrow.

Interesting that you've mentioned diabetes specialist, as the local hospital clumps Endo in with the Diabetes Centre. I am slightly hopefully though, the consultant has a few thyroid research papers to her name. Fingers crossed!

[pennyannie in reply to Yarn_]

I don't think that necessarily means much !!

but do you have links to her research papers -

Keep us in the loop anyway :

Probably start a new post as any new information deserves a new question/thread as most posts are answered as fully as possible within the first 24 hours and then we need to keep moving on as the volume of new questions dictates.

We generally look back at previous posts to refresh ourselves so there's no need to give us all the information all over again.

[Yarn_ in reply to pennyannie]

researchgate.net/publicatio...

researchgate.net/publicatio...

I haven't had a chance to read them yet, as only found out yesterday who the consultant would be. I think I'll be reading a whole lot this evening.

Thank you all so much.

[pennyannie in reply to Yarn_]

Don't drive yourself made :

I'll do that for you now !!

Thank you for the links !!

[pennyannie in reply to Yarn_]

So my lap top crashed - was this on purpose - you may well ask :

I'm unable to understand the gobblegook and always go straight to the end conclusion chapter -

All I've learnt is that you are likely in the catchment area for Norfolk and Norwich Hospital Trust :

Update us as you learn more - take good care !!

[Yarn_ in reply to pennyannie]

Oh no, that can be so frustrating when that happens.

I'm in Norfok, but appointment is with West Suffolk Hospital. I assume she's either working at both hospitals or has moved since the papers.

I'll update with a fresh post tomorrow.

[pennyannie in reply to Yarn_]

Okie doke :

One paper talks about Graves - that's my interest and my diagnosis - and it reads more like an overview of existing treatments options and does not actually recommend anything changing :

though does mention how not all patients get follow up antibody testing before the AT drug is stopped - and how not all people respond in the same way ?

[Yarn_ in reply to pennyannie]

A little glimmer of hope and understanding then

[pennyannie in reply to Yarn_]

So - my journey into your links wasn't wasted as you've been ' let in ' by a local support group - but please keep us in loop as well !!

[Yarn_ in reply to pennyannie]

I will of course. Sharing of knowledge and experience can only help us all. I loitered around this forum for a couple of months gleening info. It's a wonderful resource for info and wellbeing.

I just hope I can return the favour at a later date.

[pennyannie in reply to Yarn_]

You will - I've no doubts :

[TaraJR in reply to Yarn_]

@Yarn_ as you're in Norfolk, do you know about Thyroid Support Group Norfolk?

If you're on Facebook, do join us! There may be a few people who can give you some suggestions.

facebook.com/groups/1469075...

[Yarn_ in reply to TaraJR]

Thank you. I've sent a request to join 🙂

[TaraJR in reply to Yarn_]

I've let you in!

[tattybogle]

Hi Yarn .. i will tag   PurpleNails for you .. she knows more about Carbimazole, and reasons for T3 higher than T4 than i do.

What i see from your results :

By the looks of it you should not really have been put on Carbimazole in the first place, as the T4/T3 levels were not high , perhaps it was worth a try at very low dose if they really couldn't use anything else to treat symptoms... but whatever ... you should certainly have been taken off it urgently as a result of that TSH in Nov 22nd 2022 ..the sky high TSH of 20 showed you had now become very hypothyroid,, which was confirmed 9 days later on 1st Dec by the fT4 test that was under range at 7.

I Don't know how long it took the GP's to see the results from 22nd Nov , but your symptoms from that point on were very clearly explained by becoming extremely hypothyroid due to the carbimazole reducing your production of T4 / T3 down to so low .

And they told you to stop on the 5th Dec.

GP saying 10mcg is lowest dose was incorrect .. people have 5mcg or even 2.5mcg (by taking 5mcg alternate days) but it looks like it needed stopping totally anyway.

How long to get back to personal normal ?.. well the carbimazolw is no longer having any direct effect on lowering your thyroids ability to produce T4/ T3 .. so those T4/T3 results are your 'true ' levels now .

But the TSH is always on a bit of a delay ..and it can take quite a while to get back ~ at least 6 weeks, and possibly quite a bit longer if it has been very high or very low ( due to "hysteresis" .. means it sort of 'gets stuck' for a while) .

So for the moment your fT4 and fT3 levels are a more 'trustworthy guide to your 'true' thyroid levels.

(The TSH is not a thyroid hormone, it's just a message to the thyroid from the pituitary, asking it to make more /or less of the thyroid hormones T4 & T3)

Regarding the higher T3 with low T4 ~ The thyroid gland produces both T4 and some T3. and the ratio of T3 made by the thyroid is turned up when low T4 causes the TSH to go high . So it may just be that .

There are other causes for 'higher' T3 , ( eg 'hot' thyroid nodules that make their own T4/T3 ) and a few people do naturally have T3 a little bit higher than T4 anyway, but not by as much as yours is now ..that's a bit weird .

Autoimmune Hypothyroidism (Hashimoto's with a goitre / or Ord's without ) often starts with a period of mild hyperthyroid levels , before then becoming hypothyroid .. which may be what is going on with you .

The positive TPOab confirm autoimmune thyroid disease , they can also be positive in Graves as well as Hashimoto's, but your T4 and T3 levels did not indicate Graves.. (carbimazole is needed to control the thyroid in Graves, but not in Hashimoto's/ Ord's where the T4/T3 levels are only temporary and will go down by themselves )

i hope some of that makes some sense .. i stupidly started writing it before having i had any coffee .. and the got 'brain-fade' somewhere in the middle , so there might be important stuff missing .. see what others who are more awake say.

edited ,to correct a couple of typo's p.s .... ask them tomorrow to consider testing TRab (Thyroid Stimulating Hormone Receptor antibodies) . and ? to consider arranging an ultrasound scan of thyroid to look for nodules .

(ultrasound can't tell if they are 'hot' nodules that are producing T4/T3 independently , or just normal nodules but i believe it's the first steop in looking for 'hot' nodules )

[Yarn_ in reply to tattybogle]

Thank you. Appreciate you taking the time before coffee.

I think I'm getting a handle on what I need to be asking, requesting, and disputing (hopefully not much) tomorrow.

[humanbean]

Is it usual for T3 levels to be a higher percentage than T4?

It is common in the early stages of hypothyroidism (underactive thyroid).

T3 is the active hormone that every cell in the body needs. When the thyroid starts to fail the thyroid prioritises the production of T3 over T4 for as long as it can.

T4 is the raw material required for the production of T3.

T4 is called this because it is a Tyrosine molecule with 4 iodine atoms attached.

T3 is called this because it is a Tyrosine molecule with 3 iodine atoms attached.

The official name for T4 is Thyroxine.

The official name for T3 is Triiodothyronine

All of the body's T4 is produced by the thyroid.

About 20% of the body's production of T3 is produced by the thyroid. The other 80% is produced by removing an iodine atom from T4 (and thus making T3), and this happens in various organs and tissues around the body e.g. the gut, the liver, the kidneys and probably some other places too.

You'll see lots of references on the forum and on thyroid-related websites to "conversion" and problems with it. This is in reference to converting T4 to T3 (the active hormone).

Some people have problems converting T4 to T3. One of the major factors in whether or not someone converts T4 to T3 very well is whether their nutrient levels are high enough. In particular the really important nutrients are Vitamin B12, Folate, Ferritin (iron stores) and Vitamin D. You'll see them referenced on this forum over and over again.

There are other nutrients that are important although not quite so important as the ones I've already mentioned, and they are given less attention e.g. Magnesium, Selenium, Zinc, Iodine (never supplement iodine without testing first - it used to be used decades ago to treat hyperthyroidism - overactive thyroid)

Another factor that is important in conversion is cortisol levels - too much or too little cortisol can cause problems. I would suggest that people concentrate on getting thyroid hormones and nutrients as close to optimal as possible before thinking about cortisol.

[Yarn_ in reply to humanbean]

Thank you for the reply.

Love the concise description of the T4/T3. I've been trying to read quite a bit on the old interweb and it's amazing how complicated some websites seem to make it.... Well to those of us that don't have a degree in Biochemistry

[humanbean in reply to Yarn_]

One thing I forgot to mention...

One of the effects of being hypothyroid is that it reduces the production of stomach acid.

Stomach acid is essential for breaking food down so that the stomach and gut can extract and absorb nutrients from food.

Anyone who is hypothyroid is much more likely than healthy people to have low nutrients because of the low stomach acid, and therefore poor conversion from T4 to T3.

Many of us take so many supplements we almost rattle.

.

Another problem we have is that doctors see a result for ferritin (for example), and it is in range. So they think this is fine and dismiss the patient's low iron symptoms.

But if you have three patients A, B, and C with the following ferritin results with a reference range of 30 - 200 (For example. Ranges vary) :

A - 30 (bottom of range)

B - 115 (mid-range)

C - 200 (top of range)

Many doctors will consider all these results to be fine because they are in range. But in reality patient B is likely to feel best, and patient A will feel worst. The optimal level for ferritin with that reference range (30 - 200) is approx 115 - 150 (roughly 50% - 70% of the way through the range).

We usually end up treating ourselves when we have low levels of nutrients, and then continue to take supplements at a lower level just to maintain optimal results.

[Yarn_ in reply to humanbean]

Thank you. Certainly plenty for me to be doing