Carbimazole and prednisone together: I wish I... - Thyroid UK

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Carbimazole and prednisone together

L154C0 profile image
31 Replies

I wish I could tell you my latest bloods, but GP is sitting on them. However, she wants me to start carbimazole 5mg and prednisone 20mg (for 3 days). She mentioned my T3 was 6.3 and T4 was within range but that’s exactly what it was last month so I’m not even sure that’s the up to date result. I also have hashi ABs so this could all be the transient hyper phase of that.

I’m very wary to start meds before absolutely knowing the results. Also, slightly worried it’s a GP prescribing and not an endo (can’t see endo til May 2025).

Would you take meds and see if symptoms improve or wait for more specialist diagnosis?

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L154C0
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31 Replies
TiggerMe profile image
TiggerMeAmbassador

I'd insist they print out your results, which you are legally entitled to, then share them with us 🙂

Ask the receptionist rather than the Dr

L154C0 profile image
L154C0 in reply toTiggerMe

I did ask, but they have to be reviewed by a Dr first. It’s soooo frustrating.

TiggerMe profile image
TiggerMeAmbassador in reply toL154C0

I wouldn't do anything until you have seen them, fT3 at 6.3 is in range assuming 3.1-6.8

Lolota profile image
Lolota in reply toTiggerMe

You have to know the range, otherwise it doesn't mean anything.

TiggerMe profile image
TiggerMeAmbassador in reply toLolota

This is true, hence the guessed range (fT3 range seems to vary less than fT4)

L154C0 profile image
L154C0 in reply toLolota

ft3 range 3.5-5.8. Mine’s 6.3 down from 6.4 a month ago.

T4 range 7.0-20.0. Mines 15 down from 18.9 a month ago.

TSH range 0.3-5.0. Mines 0.01 down from 0.02 a month ago.

Lolota profile image
Lolota in reply toL154C0

Your ft3 is above range, and your tsh is ok but Doctors can panic with a very low tsh and advise too quickly to a much lower dose. I don't think it's worrying. Your t4 is alright as it's going down. How are you feeling? A high t3 can cause anxiety and have consequences on your general well-being. I wouldn't take other medications personally as your ft4 is going down and on a good level. Do you still take thyroid medication? Maybe you can lower the dose and see how you feel and retest again in 3 weeks.

LindyMc profile image
LindyMc in reply toTiggerMe

Just about to say the same thing!

tattybogle profile image
tattybogle

have you had another GP blood test since the medichecks one then ?

tattybogle profile image
tattybogle in reply totattybogle

i put this on your other post but i'll copy it here ,, it's useful for others to see timeline , previous results etc .

looking back

3 months ago:

TSH 3.8 ( no T4 done).

2 mths later :

TSH: 0.1 (0.3 - 5)

T4: 15.7 (7 - 20)

Ferritin: 130 (15 - 20) interestingly, results from 2 months ago showed ferritin at 57.

symptoms still there including hoarse voice, hair dropping etc/ A&E vist , tachycardia/. According to the scales in A&E I’ve lost 6lbs in 4 weeks without trying, lost appetite.

prescribed beta blockers ,,, helping with palpitations / tremor

2 wks later (medichecks):

TSH 0.05 [0.27 -4.2]

fT4 25 [12-22]

fT3 5.8 [3.1- 6.8] TPOab 250 [<34]

high cortisol.

then endo letter : healthunlocked.com/thyroidu... ~ asks GP to retest in 2mths to see pattern.

So .... apart from beta blockers which you have already , there is not much to do but wait for next test unfortunately..... regardless of whether this is early /mild graves that is potentially worsening and might end up properly hyper ... or just early hashimotos that is wobbling around a bit and will eventually go hypo at some point later on , it doesn't actually make any difference in practical terms at this point...... even if they did a TSI test today and it was positive , they (presumably) won't risk giving you antithyroid drugs unless T4/ T3 are shown to be consistently over range ... (because they risk potentially serious side effects on liver) and you obviously don't need any levo at this point .... so what happens next will depend on the results of the next test .

The only tools they have to fix thyroid problems ( whatever the cause is) are antithyroid drugs , levo , beta blockers , or remove / destroy thyroid ..... or wait and see ... that's the lot.

when you get next test in ? about a month .... it should hopefully be clearer what is happening .

L154C0 profile image
L154C0 in reply totattybogle

Hi. Yes. Had one 4/11/24

TSH: 0.02 (0.3-5.0)

T4: 18.9 (7.0-20.0)

T3: 6.4 (3.5-5.8)

TPOab: 356 (0.0-9.0)

I’ve had another one on Monday but am awaiting results…

helvella profile image
helvellaAdministrator

If, in the end, you do take Carbimazole, I offer this link to a blog I wrote.

helvella - Splitting Carbimazole Doses

A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.

Last updated 14/09/2024

helvella.blogspot.com/p/hel...

However, I agree with TiggerMe about getting results before making your final decision.

L154C0 profile image
L154C0 in reply tohelvella

Have you heard of 3 days of prednisone being prescribed alongside starting carbimazole? I’ve tried to google it and can’t find anything.

helvella profile image
helvellaAdministrator in reply toL154C0

No.

This is a Summary of Product Characteristics document for one prednisolone product approved in the UK. I can't see a single relevant indication for its use alongside carbimazole.

mhraproducts4853.blob.core....

There are a few hits on the link below - but for things like:

Carbimazole-Resistant Graves' Disease Responding to Oral Prednisolone: A Case Report.

europepmc.org/search?query=...

L154C0 profile image
L154C0 in reply tohelvella

I’m just wondering why she’s added that in the mix? I guess that’s me hanging on the phone for another hour tomorrow waiting to speak to a GP!

SlowDragon profile image
SlowDragonAmbassador

You need to get copies of results

Plus test vitamin D, folate and B12 too

Have you had coeliac blood test

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too.

Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

L154C0 profile image
L154C0 in reply toSlowDragon

Thanks for this. Would TPOabs not be this high if it were Graves? I know my T4/T3s are normal/just over so that kind of rules out Graves according to @greygoose.

That’s why I’m reticent to take carbimazole from GP when it’s potentially going to flip-flop about due to Hashimotos. I already suffer hyper/hypo symptoms as it is!

SlowDragon profile image
SlowDragonAmbassador in reply toL154C0

It’s not cut and dried

In theory high levels of TPO antibodies suggests Hashimoto’s

Mildly raised could be Graves or hashimoto’s

I would see endocrinologist first

Fruitandnutcase profile image
Fruitandnutcase

I’ve heard of beta blockers being prescribed alongside carbimazole but when I was diagnosed my GP started me off on carb and booked for me to see an endo she said I couldn’t have beta blockers because I have asthma, but something makes me think people who are given them would probably take them for more than three days. The three days sounds very strange doesn’t it.

When I was first diagnosed I came home to a message from my GP to say that my thyroid was very hyperactive with antibodies, she had (1) booked me to see an endo, (2) had left a prescription at reception for me and (3) come back after four weeks for more blood tests.

It was three months before I eventually saw and endo but my surgery file shares with my local hospital and after four weeks I had blood tests done and I got a letter from my endo telling me to get more carbimazole and double the amount I was taking so there was some contact with the endo even though I never saw her. Perhaps it’s the same with your GP and that could be why your GP has prescribed the carb. As for the prednisolone I have no idea about that and I haven’t heard of it before. . Have you been booked in to see an endo?

You need to get and keep copies of all your tests. You are entitled to them.

pennyannie profile image
pennyannie

Hey there again :

i can't say much more than I wrote a month or so ago -

You look to have Hashimoto's but now appear to be ' seen ' as Graves though we have no proof of diagnosis -

The Carbimazole is an Anti Thyroid drug which will semi-block your new own daily thyroid hormone conversion - the result of which will start suppressing your T3 and T4 levels -

but as I understand it - we have no results / range to base this suggestion on -

your T4 is said to be in range ? with a T3 at 6.30 :

If your heart is involved causing horrible symptoms what about a beta blocker until you see the endocrinologist ?

I would have thought your initial blood test would have been further analysed for antibodies Graves - and if it was a positive for Graves it would already be on your medical records.

If you press your Profile Icon - sitting on this screen alongside My Hub - Chat - Post - Alert - Menu options- this takes you back to all your posts and all your replies from the start of your posting on this forum.

I have no understanding of Prednisone - why in particular has this been suggested ?

L154C0 profile image
L154C0 in reply topennyannie

From what I’ve managed to find out from receptionist (“but I’m not medically trained”) this weeks results are

ft3 range 3.5-5.8. Mine’s 6.3 down from 6.4 a month ago.

T4 range 7.0-20.0. Mines 15 down from 18.9 a month ago.

TSH range 0.3-5.0. Mines 0.01 down from 0.02 a month ago.

I’m still waiting for TRab and latest TPO

These results are what the GP’s prescription of carbimazole is based upon

So, to me, it looks like there’s a tiny downward trajectory on ft3 and a bit more on T4 without any medication. I was given propranolol for heart palps/tremor but it has made me quite breathless and I’ve now developed an annoying dry cough. Maybe that’s the reason for prednisone?? GP didn’t say

I’ve got an ultrasound next week to rule out nodules etc

helvella profile image
helvellaAdministrator in reply toL154C0

Propranolol has some impact on T4 to T3 conversion. Are you still taking it?

L154C0 profile image
L154C0 in reply tohelvella

No, it doesn’t seem to agree with me. Even at 10mg it’s making me very breathless and now have dry cough.

So, currently, I’m unmedicated, none the wiser (from NHS not everyone here!) and getting quite frustrated.

pennyannie profile image
pennyannie in reply toL154C0

Well that's some good news as the ultrasound should rule out some causes -

I tend to think you are still looking at Hashmoto's as I wrote a couple of months ago - which is not treated with an AT drug -

there are other beta blockers rather than a steroid - I had a quick look at the side effects of Prednisone and wasn't encouraged !!

L154C0 profile image
L154C0 in reply topennyannie

No, me neither. I won’t take it until I know why it’s been prescribed. I’m also holding off taking AT drugs until I have a definitive diagnosis.

pennyannie profile image
pennyannie in reply toL154C0

Good if you can - have your symptoms reduced or you're just able to tolerate them better ?

L154C0 profile image
L154C0 in reply topennyannie

Symptoms are flip-flopping between hyper and hypo. Freezing cold, heart palpitations, finger tremors, anxiety (not surprising!) fatigue, mentally foggy, slightly breathless.

pennyannie profile image
pennyannie in reply toL154C0

Sounds like you need something to offset some of these awful symptoms.

L154C0 profile image
L154C0 in reply topennyannie

Maybe that’s why my GP wants me to take carbimazole? But my fear is, if this is a transient phase of Hashimotos, taking an AT would seem crazy if it’s possibly going to drop anyway. I guess it’s like tattybogle said… watch and wait.

I think im going a bit crazy here trying to figure out what to do for the best.

Thank you for all your guidance pennyannie

pennyannie profile image
pennyannie in reply toL154C0

Well - if you took the AT drug or a beta blocker - for that matter - and then found you need not be on them - you would stop and your thyroid would revert to its normal function -

it might just ease some symptoms in the short term until you know for sure what you are dealing with -

as surely you can't work in this state of flux.

B12again profile image
B12again

You can use the following example I’ve made out for such a need. Adjust it accordingly or read it as a script by phone. I ring for my results to the receptionist and I’ve received them within an hour, mine are very helpful and accommodating in this respect. There’s no reason not to have sent yours or if preferred printed out and go and pick them up.

Subject: Request for Copies of My Medical Records and Blood Test Results

Dear [Practice Name or Administrator’s Name],

I hope this email finds you well.

I am writing to formally request copies of my medical notes and blood test results as I am entitled to under the General Data Protection Regulation (GDPR) and the Data Protection Act 2018. As per these regulations, individuals have the right to access their personal data, including medical records, through a Subject Access Request (SAR).

I would appreciate it if you could provide me with:

1. A copy of my medical notes held by the practice.

2. Copies of all blood test results in my records.

Please confirm receipt of this request and let me know how long the process will take. I understand that under GDPR, requests should be processed without undue delay and within one calendar month. .

If any further information is required to process my request, please do not hesitate to contact me via this email or by phone on [Your Phone Number].

Thank you for your assistance. I look forward to your response.

Kind regards,

[Your Full Name]

[Your Date of Birth]

[Your Address]

This email should ensure a professional tone and clarity while referencing the laws that grant you access to your records. Let me know if you’d like adjustments!

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