Just diagnosed

[Cp12]

Hi I've just been told I have hyperthyroidism. Tsh 0.1. T4 32.3 and t3 16.5. They have prescribed propranolol 10mg 3 x a day for symptoms. Have been having trembling in legs, increased heart rate and palpitations. I'm waiting to start carbimazole 10mg 2 x a day. My question is how long does this take to work and have people had side effects? My gp has put me off as he gave me a long list of side effects!

[PurpleNails Administrator]

Welcome to forum.

Do you have lab range for results, ranges vary between labs. By most ranges your FT4 & FT3 are well above range & TSH very low. Graves is not the only cause of hyper, it can be transient.

Have you had any thyroid antibodies tested to confirm Graves diagnosis?

Carbimazole can have some side affects & doctors should make you aware of symtoms to be vigilant for. Most have no or minor side effects which fade but if troublesome or a red flag symptoms speak to your doctor again.

Read the patient information carefully & re read so you are clear.

It’s dangerous to have untreated hyper & safer to treat with anti thyroid.

Carbimazole lowers what your thyroid produces, so the remaining levels reduce gradually. Most say they feel better by 6 weeks & then continue to improve. but it takes time to fully recover.

Thyroid function should be retested at 6 weeks & dose adjusted often lowered to keep levels in range & do not go too low.

Important to test folate, ferritin, B12 & vitamin D, and gluten issues common with thyroid autoimmune. Has dr screened for gluten allergy?

Propranolol is often prescribed temporarily alongside carbimazole to help relieve symptoms until levels are at a lower level. Do not stop it abruptly, reduce slowly when stopping.

[Cp12 in reply to PurpleNails]

Hi purple nails.The ranges are as below. I couldn't get a photo, so just free text them.

Tsh should be 0.38 to 5.53

Mine is 0.01

Free t4 should be 3.8 to 6.0

mine is 32.3

Free t3 should be 3.8 to 6.0

mine is16.5.

Advice from endriconolgy was to start the cambrizole and have another blood test in 6 weeks including the antibody test and they will see me sometime this year. Gp said they can alter dose if needed once bloods come back. I just have another question. Has anybody lost their appetite? The gp said they thought I would be hungry but I'm really not. Eating very little.

I havent started the cambrizole yet as now we're has it in stock hopefully should have it by Monday.

[PurpleNails Administrator in reply to Cp12]

I think FT4 range not correct. You put same as FT3. Likely to be 12 - 22 or similar.

I’ve never lost my appetite, even when hypothyroid. but I have heard of others getting it with Graves.

Medics should really be confirming Graves sooner rather than later. If your levels naturally drop & you have additional treatment to lower it further, by the time you are retested you would be very hypothyroid.

[Cp12 in reply to PurpleNails]

Yes I apologise the ft4 range is 11 -23. I was thinking that. I will give it a week see if appointment comes through if not I will give them a call.

[helvella Administrator in reply to Cp12]

If you read the link in my reply on this thread, you will see that I refer to the cost of different dosages of Carbimazole.

5 milligram are of the order of £2 to £4 for 28.

10 milligram are of the order of £100 for 28.

15 milligram are of the order of £250 for 28 tablets.

20 milligram are of the order of £2 to £4 for 28.

(Even within these prices, there are some utterly unbelievable variations.)

This link takes you to a list of approximate current NHS prices:

bnf.nice.org.uk/drugs/carbi...

The relative expense of 10 milligram tablets is likely one reason they have been harder to find in stock. And I am actually surprised that any NHS prescriber would choose to prescribe 10 milligram tablets when they are so much more expensive. Most of those prescribed Carbimazole would likely have little problem in taking two 5 milligram tablets rather that one 10 milligram tablet.

[pennyannie]

Hello Cp12 and welcome to the forum :

Can you please share with forum members the ranges for these blood tests and do you have any thyroid antibodies results /ranges there - generally written as either a TPO - TgAB - TRab - TSI - and / or anything saying a TSH Thyroid Receptor antibodies + a single number ?

There is nothing on your Profile page apart from the fact that you are a woman - can you please share a few details age - medical issues, if any etc :

Propranolol is a beta blocker that ' slows the conversion of T4 into T3 ' so should help with symptoms and the Anti Thyroid drugs - either Carbimazole or Propylthiouracil - are prescribed once that we have a diagnosis and the medical evidence of which antibodies were positive in your blood test.

You should feel better after a couple weeks on the AT drug - and all this drug does is semi block your own natural daily thyroid hormone production- and ' buys you time ' while we wait for your immune system to calm back down again and your thyroid reset itself without the need for any drugs,

Quite why your immune system has turned and started attacking your body rather than defend it, is of course the question and you are best paced to likely know the answer, if there is one.

The AT drug is usually prescribed when there is a diagnosis of Graves Disease and whilst no 2 peoples journey with Graves is the same - stress and anxiety tend to be common triggers - is this your diagnosis ?

Most recent research if with Graves :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The NHS generally allocate a treatment window with an AT drug for 15-18 months with the view that if you do not ' find remission ' in this period definitive treatment is recommended with RAI thyroid ablation being the first line treatment option.

The AT drug will need to be regularly monitored through blood tests every 6-8 weeks and as your T3 and T4 fall back down into their ranges the AT drug is titrated / reduced down -

so your T3 and T4 do not fall too far through the ranges you -

as then you can experience the equally disabling symptoms of hypothyroidism -

which is when your T3 and T4 are not high enough in the ranges to give you back your health and well being -

so it's a bit of a balancing act - and ideally - once in the ranges T3 and T4 should be maintained at around mid point during this first phase of Graves Disease.

The most rounded of all I researched is that of Elaine Moore - books and website - and check out the alternative, more holistic treatment options that may help in your understanding of this poorly understood and badly treated Auto Immune Disease - elaine-moore.com

Are you eyes ok ?

I don't understand your doctors comments regarding the AT drug - can you please expand on this please ?

[Cp12 in reply to pennyannie]

Hi Pennyannie.

These are the ranges, I couldn't get a photo so Free text it.

Tsh should be 0.38 to 5.53

Mine is 0.01

Free t4 should be 3.8 to 6.0

mine is 32.3

Free t3 should be 3.8 to 6.0

mine is16.5

I've not had the antibody test yet. Endriconolgy said to start the carbimazole and blood test including antibody in 6 weeks. So unsure if graves disease. One of my symptoms has been extreme anxiety this has claimed with the propranolol. My eyes are fine. Thanks for you help. I will update profile now.

[pennyannie in reply to Cp12]

Ok then - we can all read what you are writing so there is no need to duplicate the blood tests etc - but thanks anyway - very important that the antibodies are run sooner rather than later and in the meantime good to know the Propranolol has helped with some symptoms.

The common assumption is that you will be eating for England and loosing weight -

being hyperthyroid takes on many guises and why I asked about your doctor's thoughts on the negative aspects of taking the AT drug - as if with Graves - there is no immediate option - but to take the AT drug - as Graves is considered life threatening if not medicated as if the T3 and T4 keep rising - this can cause serious complications.

Many write of being anxious, nervous, jumpy, unable to turn off and sleep, some eating too much, others not eating much, with something of brain / body mismatch with your brain very active but your body totally exhausted sitting on the sofa -

Keep reading around on the forum - it probably all reads double Dutch but don't worry it all becomes clear given time -

If you get lost - just find and press the Profile Icon on the screen alongside My Hub - Chat - Post - Alerts and Menu sections and this takes you back to your front page -

if you want to read anybody else's Profile - simply press their icon which sits alongside any reply they have made to anybody :

We are a patient to patient open forum - supported by the charity Thyroid Uk - thyroiduk.org - where you can read about all things thyroid and so much more :

We try to answer every new question/post within around 24 hours and any new information deserves a new post/question so we all have an opportunity to read and help support you.

[pennyannie in reply to pennyannie]

Please try and eat - healthy, cooked from scratch food -

it is very common when metabolism runs too fast as in hyper, or too slow as in hypo, that the body struggles to extract key nutrients from food and low levels of the core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary -

Please ask for blood tests for these vitamins and minerals so we can advise where optimal levels should be -

Being within NHS range simply means you don't qualify for a prescription and some ranges are too wide to even be sensible - and what we need are optimal levels s within NHS these ranges - on which we can advise.

[Cp12 in reply to pennyannie]

Thank you.

[helvella Administrator]

I've tried to pre-empt some of the common questions those in your situation might want to ask.

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...

[Cp12 in reply to helvella]

Thank you I will have a read.

[Teaforthesoul]

Hi

I have also been diagnosed with hyperthyroidism mine is postpartum induced.

I had loss of appetite, really bad anxiety, night sweats, hot flushes, basically felt like I couldn't switch my brain off and I had funny vision too, high heart rate

I started to to take carbimazole 40mg 1 x daily and I split my dose because I found I started to feel worse 12 hrs later my T4 is 24 but have high TPO antibodies >1300

I've been on it now for 3 weeks it seems to be reducing some symptoms although I still feel very anxious/ low

Worried I'm going to go hypothyroid now

I have a 6 week bloods and appointment with endocrinology on 25th of the month.

Other than meds wearing off I didnt get any side effects from carbimazole other than when they were wearing off. I was really worried about the side effects as I dnt usually like taking meds

I also got prescribed propananol

I'm not sure if high tpo antibodies indicate autoimmune disease graves disease or hashimotos?? I'm still confused about this aspect of my results

[pennyannie in reply to Teaforthesoul]

When the thyroid comes under attack from your immune system there can be an overlap of the antibodies found within your blood sample -

It is not uncommon to have both Graves and Hashimoto' antibodies positive and over range =

the difference is Graves is considered life threatening if not medicated as thyroid hormones can keep rising higher and higher putting extreme undue stress and strain on your heart - and the treatment is with the Anti Thyroid drug - either Carbimazole oe Propylthiouracil ( PTU ) -

if Graves antibodies - generally written as a TRab ot TSI - are not positive -

but high TPO / TgAB are - this is indicative of Hashimoto's AI thyroid disease - Hashimoto's is not treated with the AT drug as the high thyroid hormones - T3 and T4 - fall back down into range by themselves and do not keep building, higher and higher. as in Graves.

Overtime , if with just dealing with Hashimoto's the thyroid becomes less able to keep producing a sufficient levels of thyroid hormones to meet your needs and you will be prescribed T4 - thyroid hormone replacement to build back up your T4 levels and hopefully relieve the symptoms of hypothyroidism then being tolerated.

[Cp12 in reply to Teaforthesoul]

Hi , Thanks thats good to know. I dont really like taking meds either. Do you still take the propranolol alongside carbimazole? It says on the box not to just stop it, I'm wandering when I should start reducing it or is too be taken alongside. If I'm honest I can't wait for appointment with endriconolgy to find out if graves/ the reason. Its all very confusing at the min.

[PurpleNails Administrator in reply to Cp12]

Do not start reducing propranolol until you know thyroid levels are stable & fallen back into range.

Some do stop quickly & are not affected but I was told to stop a high dose abruptly by specialist & carbimazole was halved at same time.

Drs should know it shouldn't be stopped abruptly and I was quite unwell with migraines. GP put me back on them for permanent migraine prevention. I was able to lower to very low dose, but never off completely.

[Cp12 in reply to PurpleNails]

Hi thank you. Oh god that's not what you want. I feel so crap as it is don't want to feel worse.

[Teaforthesoul in reply to Cp12]

I do, I only take 10mg 2 x daily when i take the Carbimazole because I'm scared of taking them I know that sounds ridiculous but I just am. I'd say just keep taking until you are advised by endocrinology at your apt. My GP has said I can request a blood test before the 6 weeks if needed If I start to get hypo symptoms.

I feel the same I'm very confused and anxious about it all. I can't wait to see endocrinology too. I've always been pretty healthy and never really had to take meds. I've just been for the weekend to my inkaws who have not been sympathetic at all infant t sniggered when I was telling a family friend about what I'd been going through since having baby's and it eas nice that she could relate to me and how bad it makes you feel as she had it when she was 39 and can really sympathise with me but It does get better and easier to manage

[Cp12 in reply to Teaforthesoul]

I will keep taking them. They are helping now. Don't want to feel like I did before. I'm same as you pretty healthy. You hear people say the have over or underactive thyroid and you don't think much of it till your in that situation. It's a awful feeling. Hopefully once the meds start to work we will both feel better.

[PurpleNails Administrator]

To clarify terms for thyroid antibodies

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab - TSH receptor antibodies

TSI - Thyroid-Stimulating Immunoglobulin

These are considered diagnostic for Graves.

TPO & TG antibodies can be present with BOTH Graves or Hashimotos.

 TPOab - Thyroid Peroxidase antibodies

TGab - Thyroglobulin antibodies

Positive TPO & TG confirm thyroid autoimmune activity - but highest elevation with Hashimoto’s.

Cp12 Teaforthesoul