Hyperthyroid and Graves Disease

[Netball01]

Hi, I was diagnosed with hyperthyroidism in April with the underlying cause being Graves Disease diagnosed in July, Still trying to manage the right meds and decision on next treatment, but I regularly feel nauseous after eating, just wondered if anyone else experiences this. Waiting for next appointment date with consultant. TIA

[PurpleNails Administrator]

Welcome to forum.

Do you have results to see how your levels are being managed?

Which thyroid antibodies have been tested because only certain types confirm Graves.

Do you take carbimazole or propranolol ? Which & what dose?

[Netball01 in reply to PurpleNails]

I’m waiting for test results from two weeks ago. Not sure what previous ones were. TSH receptor 60.4. Carbimazole 20 mg increased from 15 mg after previous test results.

[PurpleNails Administrator in reply to Netball01]

Drs often go by TSH but dose needs to be adjusted by FT4 & FT3. If you levels are trouble some ie disproportionate level 1 high & 1 low or unexpected fluctuations doctors should consider block & replace method.

Have you been tested for gluten allergy?

[Forestgarden]

Hi there, if you've been diagnosed with Graves by antibody tests, then you need to stay on your carbimazole for the foreseeable future. At the moment, the aim will be to suppress your thyroid just enough (with the carbimazole) to bring your tsh, ft4 and ft3 back within the therapeutic range. The trick is to not 'over shoot' the point where you feel good. You will need to reduce your carbimazole at some point and find that ideal balance point where your thyroid output is enough to make you feel well. This can take many months.

[Netball01 in reply to Forestgarden]

Thank you for your reply. I believe my test results dropped too much hence why the dosage was decreased from 40 to 20 to 15 and now back to 20 and have been told it may be difficult to manage due to the Graves’ disease. I appreciate this will not be a quick fix. But was wondering if anyone had experienced the feeling of nausea after eating.

[Forestgarden in reply to Netball01]

Once you find the correct dose, you'll be OK. But the nausea... do you take the carbimazole on an empty stomach away from food? Are there any fillers in the tablets you might be reacting to?

[Netball01 in reply to Forestgarden]

Meds are taken with breakfast . But the nausea happens after all meals.

[Forestgarden in reply to Netball01]

Have you looked at the filler? Is this new, since you started the carb? Or could it still be due to being hyper, with faster gut motility?

[Netball01 in reply to Forestgarden]

This is a fairly recent issue so I don’t believe it is the filler but could be gut mobility. Was interested to see if anyone else has this symptom. Thank you

[pennyannie]

Hello Netball and welcome to the forum :

There is an alternative Anti Thyroid drug - Propylthiouracil - PTU - for short - if this sickness does not subside.

Graves is a poorly understood and badly treated Auto Immune disease for which there is no cure -

All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.

Quite why your immune system has been triggered to turn and attack your thyroid and or eyes, is the question, and you are probably best placed to possibly have an idea.

There can be a genetic predisposition, possible with a family member a generation away from you with a thyroid health issue and Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one, or maybe seems to have occurred simply ' out of the blue ' - no two people's journey with Graves is the same but we do know that stress and anxiety are common ' triggers ' .

The AT drug semi-blocks your new own daily thyroid hormone production and slowly your over range T3 and T4 thyroid hormone levels will lower and hopefully fall back down into the range with your symptoms hopefully eased.

It can be a bit of a roller coaster of symptoms - there can e something of a brain / body mismatch - with your brain in overdrive but your body too weak to do much at all - exhaustion, insomnia, eating for England and loosing weight with a metabolism running too fast - and your body in a ' heightened ' state, stressed, anxious and nervous.

The NHS generally allocate a treatment window with an AT drug of around 15-18 months and with regular follow up blood tests every 6-8 weeks the AT drug is titrated / reduced down as your thyroid levels fall back down the range and as your immune system calms back down again.

When metabolism is running too fast as in hyper/ overactive thyroid , or for that matter, too slow as when hypo / underactive thyroid the body struggles to extract key nutrients from food - no matter how well and clean you eat -

and just low nutrients can compound your ill health further than necessary so suggest you ask for your ferritin, folate, B12 and vitamin D to be run and we can advise where levels need to be for optimal health - as just being in a NHS range somewhere is not optimal and some ranges too wide to even be sensible.

If your eyes are sore, gritty, scratchy, light sensitive please ensure if using any OTC or prescribed drops or ointments that all preparations are Preservative Free.

We do now have some research you may like to keep for reference :-

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

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

The most rounded of all I researched is that of Stateside Elaine Moore - books and website elaine-moore.com - I only started researching 10 years post RAI thyroid ablation when much more ill than I had ever been - I particularly thought the section on life style, and holistic and more alternative treatment options very interesting and helped me understand myself better.

Hope that helps a bit - please register for online access to your medical records if you haven't already as then we can explain anything to you that concerns you - and rest up, cut yourself some slack, presume you are signed off if working, and do something you enjoy, for yourself.

[Netball01 in reply to pennyannie]

Thank you for your reply. Very informative. The consultant has offered block and replace or radioactive treatment so I need to make a decision. I am leaning towards the block and replace and hope this sorted out the issue! I am waiting for the results of the last blood test shortly. I will talk to the GP regarding the other tests your have suggested. I have had no time off work, eat well and exercise at the gym or playing sport 3 times per week as well as walking most days. Although I do listen to my body. It has come from nowhere but is likely to be a genetic predisposition as have a history of type 1 diabetes in my family. I think I just need to be a bit more patient but will discuss the alternative drugs at my next appointment

[pennyannie in reply to Netball01]

Block & Replace - no question -this means that the AT drug will be increased to fully block all your thyroid hormone production BUT a measured dose of T4 - thyroid hormone will be added to your prescription so your T3 and T4 levels do not fall too far through the ranges and you experience the equally disabling, if not worse symptoms of hypothyroidism.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 being the active hormone and which T4 converts into as and when needed within the body.

So your power supply is being completely Blocked with the AT drug and a dose of T4 prescribed so to try and Replace what you thyroid would be supporting you with on a daily basis just to keep you ' ticking over ' - while we wait for your immune system to calm back down and stop attacking your body, rather than doing what it is meant to do and hat is to protect your body.

The other option is definitive treatment - you have the research paper there - why would you lose your thyroid for an AI disease that you'll still have - if push comes to shove have the ' offending ' gland ?? surgically removed -

it's cleaner and much more precise than taking a toxic substance that is known to be taken up - to a lesser extent - by other glands and organs in the body - and known to carry an increased incidence of cancer to breast and small bowel.

Treatment for primary hypothyroidism is woefully inadequate - I am self medicating, running my own private blood tests and buying my own full spectrum thyroid hormone replacement as many forum members have been forced to do -

I have been refused both T3 and Natural Desiccated Thyroid through the NHS - though these treatment options were widely available on the NHS up until around the turn of the century and still widely available, at a cost, throughout most of the world.

[Netball01 in reply to pennyannie]

Thank you. I will read the papers

[pennyannie in reply to Netball01]

Can I suggest you register for online access to your medical records held at the surgery - if you don't yet have this facility - as it will help you track your own progress as you go through this first phase of Graves Disease. It is now our legal right that we can see all our medical records and hopefully you will be copied into any hospital / surgery correspondence - just ask the receptionist at the doctors for the relevant forms and take some form of official ID.

What symptoms were you dealing with when you went to the doctor in April and diagnosed hyperthyroid / overactive thyroid ?

Can you please share with forum members the very first blood test results and ranges run in April and the follow up blood test results and ranges which I presume were run before seeing the consultant in July ?

[Netball01 in reply to pennyannie]

I do have access to my records. These are the results on so far. I don’t have the July results but dosage was increased from 15mg to 20 mg and waiting for response from September tests. My TSH receptor antibody results from July was 60.4.

Symptoms were high heart rate and propranolol was prescribed and taken for about 4-6 weeks with the carbimozole. Irritability and found it hard to continue with sport and gym. Tiredness and hyperactivity as feeling overwhelmed in situations that I would normally handle without issue. I just could tell that something was not right as fairly in tune with my body.

Photo

[pennyannie in reply to Netball01]

Thank you - I was thinking you were initially symptom free - so yes these symptoms make sense and seen in Graves and just glad they have been resolved by the AT drug and you are back at work and enjoying your leisure time.

The Propranolol is a beta blocker which also tends to slows down the conversion of T4 into T3 - as it is too high a T3 causing the symptoms detailed - presume it helped - are you still taking it -

as I read Propranolol can be difficult to come off and it needs to be reduced down very very slowly, and presume the longer one has been on it, the more difficult this may be.

It is a bit disconcerting that your blood tests do not seem to be including a T3 ?

Ideally you should be getting a TSH + Free T3 + T4 reading / range as you track your progress going forward.

Ideally - once your thyroid hormones start falling you need to try and keep your T4 at around mid point in it's range with a slightly lower than mid point - in the range - T3.

Unless of course you have already on file some thyroid blood test readings from when you were well and know where in the ranges your T3 and T4 need to be - in the ranges - to give you back your health and well being.

[Netball01 in reply to pennyannie]

Not symptom free unfortunately, I feel better then some symptoms return. I believe the underlying Graves’ disease makes it difficult to manage. I was on the beta blockers for about 4-6 weeks and dosage was halved for the last couple of weeks then stopped completely. I had no issues but obviously took for a fairly short amount of time. I’ll check my full results with the consultant at next appt. Thank you for all the info you have provided.

[pennyannie in reply to Netball01]

Yes - when Graves is first diagnosed the AT drug is generally put at a higher dose to try and accommodate and block any further upsets and then slowly reduced down - as the immune system calms down.

The Beta blocker would have had some bearing, and slowed the conversion of T4 into T3 and so stopping this probably necessitated increasing the AT drug to compensate the Propranolol's action and why you haven't been symptom free.

Hopefully once the B&R kicks in - these ' hyper type ' symptoms should resolve.

[Netball01 in reply to pennyannie]

I was only diagnosed with Graves in July and beta blockers prescribed in April but definitely do not need them now. I am likely to opt for the B&R when I see the consultant next. I would like to hope that I go into remission but think that it may continue to flare up and will then have to discuss further options. Thank you so much for all the information

[nooneimportant]

hello

I’m on Carbimazole and I had this until I was on the right dose I also had zero hunger so it might be a side effect of the meds - maybe once you’re on the right dose and it can take a little while unfortunately you might find gradually things settle down x

[Netball01 in reply to nooneimportant]

Thank you. That’s good to know. I hope things have settled for you

[nooneimportant in reply to Netball01]

Yup only when I’m pushing quite low and a bit over medicated - for me - it starts me feeling nauseous again but atm I’m ok x

[Pasionaria]

Hi, nausea is a very common side effect of Carbimazole but in many people it settles after a while; it looks like this is not happening for you. Maybe you could ask your pharmacist or GP for anti nausea medication.

[Netball01 in reply to Pasionaria]

Thank you

[Doodlebug50]

Hi, yes I feel nauseous most of the time, not just after eating, had anti sickness meds from Doc, didn't make any difference. I'm currently on block and replace since last October, I suck mints to try and distract

[Netball01 in reply to Doodlebug50]

Thank you for your information. My consultant is reducing my dosage so I’m hoping that helps. I hope you get some relief soon

[Doodlebug50]

Thank you. That is interesting that your dosage is being reduced, I have been wondering if my Levothyroxine dose is too high, but they didn't test my T4 last time, as Doc swears it won't make a difference, even if I am being over dosed.... so fed up with it

[Netball01 in reply to Doodlebug50]

Hi, my dosage is being reduced as my last TSH score has jumped up. My understanding is that my levels will continue to fluctuate due to the Graves’ disease so I think the next step will be block and replace. I hope you get something sorted soon