Graves gloom

[Weary1]

Feeling lost. My thyroid has gone from severely hyper to severely hypo. Consultant has stopped my 15mg carbimazole and propranalol immediately. Not sure if I have a tummy upset coming off tabs or if I've a bug or gallbladder attack ( I'm waiting to be well enough to have gallbladder removal). I feel my loved ones are tired of my illness as I am. I was diagnosed beginning of August.

[PurpleNails]

Welcome to forum 

What were your levels on diagnosis? 

You need TSH, FT4 & FT3.  

Was TSI & or TRab positive.    

Thyroid antibodies levels should have been confirmed before diagnosing Graves.

There are other reasons for low TSH / high thyroid levels.  

15mg carbimazole isn’t a high starting dose.  Were you tested in September? You should have been if started on carbimazole in august- Leaving you until now is far too long. (No wonder your hypo now)

Do NOT stop propranolol abruptly.  Some need to reduce very slowly.  What dose were you on? 

I had migraines when doctor told me to stop suddenly.  GP resumed it & still take low dose as migraine preventer.   Took many months to go from 120 to 30 mg split daily dose. 

Please post on main thyroid forum. Many more members & many who are knowledgeable about hyper & hypo.

[TaraJR]

I agree with PurpleNails . Definitely do not come off propranolol quickly. I had terrible migraines when I did that. The next time I had to do it, my GP advised I came down by a quarter of a tablet for a week or so, until I was down to nothing.

Always get copies of all your thyroid test results. You're legally entitled to them and they're free. Or download them if you have online access. You need to know you are definitely Graves by checking those TSI or TRAb antibodies.

I think people can have a swing from hyper to hypo with Hashimotos (underactive) autoimmune thyroid disease. Antibody tests show what you have and treatment depends on this.

[Weary1 in reply to TaraJR]

They (gp, endo) just seem to prescribe/withdraw meds and leave you hanging. I have a letter from Endo confirming Graves saying I have gone from displaying profound thyrotoxicosis July to profoundly hypothyroid nov.

7 July

Free t4 32.8

Free t3 13.9

Tsh less than 0.01

Tpo 16.1

Tsh receptor antibody levels 6.79

Gp Started carbimazole 20mg ,

Started propranolol 40mg

11 Nov

Tsh 97.03

Free t4 undetectable <5.3

Gp Reduced carbimazole 15mg then 10mg

15 nov

Endo Stopped 10mg cabimazole and

stopped 40 mg propranolol

I see endo again in 2 months

Did you request your results by letter to your Gp ?

[TaraJR in reply to Weary1]

What's the reference range for the tsh receptor antibodies?

[Weary1 in reply to TaraJR]

Hi that's all the info I have, it's just a letter from endo to gp. Do you have to request the data by letter to your gp ?

[TaraJR in reply to Weary1]

We recommend that you always get copies of all your test results with their reference ranges. You're legally entitled to them and they're free. Ask your surgery for copies of all them since you were diagnosed. Or download them if you have online access to your records.

[Weary1 in reply to TaraJR]

Thank you I'll ask them Monday

[pennyannie]

Hello Weary and welcome to the forum :

I too have Graves Disease but mine was diagnosed around 3 months after being physically and verbally abused by a man I employed as my assistant manager .

Graves is an auto immune disease and something has triggered your immune system to go on the attack and play havoc with your thyroid and the symptoms experienced can be very uncomfortable and you do need medical intervention as you can't manage Graves yourself.

Graves is initially treated with anti thyroid drugs, like Carbimazole, which blocks further thyroid hormone production and slowly your T3 and T4 levels should fall back down into range and your symptoms relieved.

The AT drug then needs to be titrated down as if your T3 and T4 levels fall too far through the range you will experience the equally disabling symptoms of hypothyroidism.

The AT drug basically puts you into a holding position, life an airplane waiting to land, while we wait for your immune system to calm down and hopefully this is just a blip and your immune system reverts to the job it's meant to do.

As already suggested best to post on the Thyroid UK forum as we are many more of us there and where you find many more knowledgeable forum members.

You might like to read further o Thyroid Uk - thyroiduk.org

The Elaine Moore Grave's Disease Foundation website is the most well rounded of all my research but it is all a bit overwhelming and when not well probably a bit too much so just dip in and out and try not to get too stressed as Graves is said to be driven by stress and anxiety.

elaine-moore.com

[pennyannie]

and here you are on the Thyroid UK forum :

Please ensure that an antibody test has been actioned and that you have over range and positive Graves antibodies generally detailed as :-

a TSI - a thyroid stimulating and or a TR ab - a thyroid receptor blocking - antibody -

over range and positive blood test for this poorly understood auto immune disease.

We can explain any blood tests you may have and help explain how the relate to how you feel.

[Weary1 in reply to pennyannie]

Hey pennyannie I'm penny too

[Weary1]

Hey purplenails, tarajr & pennieannie. I will get copies of t3 & t4. Aug gp put me on 20mg carbimazole. Then beginning Oct I think he started propranolol 40mg at request of my Gallbladder consultant. At the same time gp reduced carbimazole to 15mg It's a confusing blur. I improved from Aug, but slipped right back during Oct. Sent back to gp 2 weeks ago when gp said bloods showed id swung the other way and reduced carbimazole to 10mg. Had my first endo consultant appointment this week. I've never spoken to such a rude and shouty Dr before. I was sent my letter back in August for my appointment 16th November for a video call. According to his phone call, id failed to attend his clinic, his clinic had done away with video calls so I couldn't be telling the truth. He told me to stop both 10mg carbimazole and 40mg propranalol immediately. I got to see him again january. Do you think I should see gp about propanalol? I've been off them 5days?

[pennyannie in reply to Weary1]

To reply to certain people you must ensure their name is ' highlighted ' when you reply - on a one to one this is straightforward but writing to 3 people together you need to highlight all 3 names by pressing the @ and then adding each name and you should get a list up of same name as you type it out :

So, I'll just do   TaraJR and   PurpleNails for you :

I'm sorry you were met with such rudeness, could be he has the antibody blood test results back and has realized you are on the wrong medication , and if in a cynical mood I could write welcome to most endocrinologists but that is unfair and can only speak from my experience.

Since this endo has suggested you stop both the AT drug and beta blocker I do wonder exactly which antibodies have been found over range and positive - please check this out with your doctor.

There are 2 thyroid auto immune diseases and both initially start off the same way and why the antibody test is essential so to determine if you are dealing with Graves or Hashimoto's as Hashimoto's is not treated with an AT drug.

For all things Hashimoto's auto immune disease which is diagnosed by either TPO or TgAB antibodies being over range and positive - thyroidpharmacist.com

[PurpleNails in reply to Weary1]

Your endocrinologist sounds awful. 

There’s aren’t many (any) thyroid specialists, the treatment it restricted - they have no flexibility.  Even if invested in offering tailored treatment they would be discouraged. 

 I think these doctors have other real interests but as part of the endocrinology service they are “made” to help out with the “Tuesday afternoon thyroid clinic”   

Hopefully you never see him again, I’ve never seen same one more that once.  

40mg isn’t too high a propranolol dose.  I say if you feel well otherwise it might not be an issue.  As you are unwell it might be difficult to pin point symptoms. Propranolol lowers heart rate - so if you feel anxious / tense or stressed it may be due to the propranolol withdrawal. 

If managing ok its ok to stop.  Not everyone is adversely affected. 

Definitely obtain your results.  Do not accept verbal / hand written - typed (emailed) results - they must be lab results with range.  Printed or online copies.  

Keeping track of your own levels is often only way to ensure they are actually - properly kept in check, doctors will pass off to specialist, delay organising retests or communicating results & actioning adjustments.  

GPs say they can’t test all thyroid antibodies.  Specialist often arrange Graves antibodies & we often learn many members haven’t had the right (or any) anti body testing done at all.   Doctors focus on TSH which isn’t appropriate & diagnose hyper Graves based on low TSH, not always checking FT4 & FT3.  

There are private options for blood tests.   (Lots of information on main forum about this) 

There’s several companies with different options.  Some are for basic thyroid function, some with key nutrients (folate, ferritin, B12 & vitamin) all which can be affected if thyroid an issue and thyroid Antibodies.  

See link below which lists companies - Some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.  

Is that something you think you could manage?

Here a list of the thyroid antibodies: 

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) 

TSI (Thyroid-Stimulating Immunoglobulin)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TPO & TG are associated with Hashimotos (autoimmune thyroiditis) and ALSO present with Graves. 

TSI & Trab - Graves.

Any eye issues? 

Many with autoimmune thyroid issues have gluten allergy or intolerance any gut issues? 

[Weary1 in reply to PurpleNails]

yes to gut issues, I'm intolerant to gluten and dairy and I have gastritis and a huge gallstone that my gallbladder has contracted around, I'm waiting for graves to stabilise enough to have gallbladder removal op. I'm new to chats/forums, I'm social media shy. This a maze to this foggy head. I do have eye pressure but as endo said it's my fault for smoking

[PurpleNails in reply to Weary1]

When gluten is an issue it’s an all or nothing situation any trace of gluten will cause an issue.

Took me a while to get used for forum, reading & learning from post can really help.  

Don’t be shy. No question is too silly, we are a helpful understanding bunch. 

Autoimmune Thyroid can sometimes cause eye issues.  More common with hyper, Dry, gritty eyes or bulging appearance, pressure pain, especially when moving eyes,  can be signs.  Needs to be managed by separate specialist.  

It’s true smoking can worsen the severity but saying ocular pressure is your fault for smoking is very unfair & unhelpful.  

Some Doctors just like lecturing patients & passing blame onto them - Ive never been a smoker but have been given lectures about how I shouldn’t smoke.  

[Weary1 in reply to PurpleNails]

I have numbers! It's a letter from consultant to gp tho. Says July showed thyrotoxicosis with free t4 of 32.8, free t3 of 13.9, tsh of less than 0.01, tpo levels 16.1 and tsh receptor antibody levels of 6.79. Started 15mg carbimazole daily which was reduced to 10mg when found to be hypothyroid Nov 11th when tsh levels were 97.03 with free t4 undetectable at less than 5.3. continues with propranolol 40mg (started sept I think). You (gp) have reduced carbimazole to 10mg (Nov 11). Now advised to stop carbimazole and propranolol (15 no)

[PurpleNails in reply to Weary1]

They never include ranges between doctors - which is most unhelpful.  Typical FT4 ranges might be: (7.5 - 21.1) (8 - 21)   [9 - 19.1] (12 - 22) - There are many more.

So by most ranges FT4 & FT3 were high. TSH undetectable. Expected with high levels.  

Not testing between July & November was a mistake - TSH 97.03 & FT4 under 5.3 is very severe.  I’d guess you felt as terrible hypothyroid then when first diagnosed, if not worse?

Do you have another test schedule to check the levels don’t creep up too high again? Test again if symptoms alter or worsen and even if feel ok - still test within about 6 weeks to check levels, gradual changes can go unnoticed but you need careful monitoring.  

By most ranges TRab positive & TPO negative. So it possible high levels haven’t  resolved yet.

[pennyannie]

The eye pressure is well documented with Graves Disease and it's important to be referred to a Thyroid Eye Disease specialist or a Graves Ophthalmologist.

I have Graves Disease and now post RAI thyroid ablation and i have eye pressure and have never smoked :

There are TED clinics attached to most major hospitals throughout the country and suggest you also check in in with the Thyroid Eye Disease Charitable Trust who can signpost you to your nearest specialist, clinic amongst other things. tedct.org.uk

If using any eye drops, sprays or greasy overnight products to ease symptoms please ensure that anything and everything is Preservative Free even those prescribed on the NHS.