Overactive Thyroid - Carbimazole and reduced immune system

[middleaged]

Hi - I was diagnosed in 2018 with an overactive thyroid. I'm currently taking 15mg of carbimazole daily and I have to say it's not agreeing with me at all. I've had 12 months of tiredness, brain fog, forgetfulness, aches and pains and generally feeling unwell. I've had two colds and on both occasions they have led to a severe chest and water infection. I've been the doctors again today and have been told that the carbimazole will be affecting my immune system ! Has anyone else experienced this? are there supplements you can take to help reduce symptoms and boost your system? any advice would be appreciated, thank you for reading.

[pennyannie]

Hello Middleaged

What have you been diagnosed with ?

Do you have any blood tests results to share with us ?

I'm with Graves Disease and had RAI in 2005, ablating my thyroid, and giving me thyroid eye disease and hypothyroidism as well as Graves which is an auto immune condition.

There are alternatives to Carbimazole.

Your vitamins and minerals need to be optimal as your body clock has probably been running very fast, and now might be going too slow, it's a fine balance, metabolising.

I would suggest in the first instance you should ask your doctor for a blood tests for thyroid to include T3 and T4 as well as TSH and for ferritin ,folate, B12 and vitamin D as detailed on this amazing site and then people better able than me will be able to talk you through the next steps to take if necessary.

[middleaged in reply to pennyannie]

Hi pennyannie,

Thank you for taking the time to reply. I'm due for bloods next week, however, looking at the request they're asking for :

Biochemistry :

Liver FunctionTests - U/E Creatinine, Thyroid Function Test

C- Reactive protein

Bone Profile

Hb A1c

Lipids

Haemotology - FBC, ESR

My Doctor has also requested an appointment with Endocronology, I did see them last year and have been having bloods done every 3 months.

I'll note the ones you have listed and request them also. It was only after I pushed with the Doctor that the Carbimizole isn't agreeing with me that he admitted that it does affect your immune system.

Once I receive the results etc I'll share.

Many thanks

[pennyannie in reply to middleaged]

Ok then, but since you aren't comfortable on Carbimazole and it's known side effects, ask your doctor about the alternative medication - Propylthiouracil - commonly referred to as PTU.

I would imagine you're 3 monthly tests will have been TSH, T3 and T4 results

[middleaged in reply to pennyannie]

I'll definitely ask them for this, thanks, in the meantime, are there any vitamin supplements you would recommend? I do eat plenty of fresh fruit and vegetables but this constant tiredness, lethargy and so ill when I get a common cold is really getting me down. I have a demanding job and home life and to be honest I've just taken the medication prescribed to me without really looking into what an overactive thyroid is all about. This second cold in 6 months, which has resulted in antibiotics and steroids, has finished me off! I've always been fighting fit until last year when I was diagnosed.

[pennyannie in reply to middleaged]

Well your body clock has been running fast, and now it may be running too slow. So it's important to get checked out for ferritin, folate, B12 and vitamin D as these essential body building blocks need to be optimal to support you through this difficult time. You may not be metabolising your food so no matter how well you eat, it may be going straight through, giving symptoms of loose, fast bowel, or you may have slowed down too much giving the opposite symptoms.

You will be tired, your body is running to fast and isn't turning itself off.

Bit like a kettle with a dodgy switch and doesn't turn itself off when it reaches boiling point.

Have you had a diagnosis of Graves Disease and do you have a positive blood tests showing TSI and or TRab antibodies ?

[middleaged in reply to pennyannie]

They haven't officially given me the Graves disease diagnosis. I do go to the toilet more often than before, sometimes not long after a meal. I'll ask about all the other tests as, judging by what the Doctors have sent me, they've not been included.

I feel like I'm racing all the time, can't relax, and, as I've previously suffered with anxiety, the thyroid problem seems to exacerbate the symptoms.

Do you think taking vitamins, while I wait for more tests, will help? I've read about magnesium glycinate, vitamin b and c and cod liver oil?

[pennyannie in reply to middleaged]

Reading your post, you say you have a demanding job and home life.

You know you are racing - you need to try and reduce your responsibilities now.

is it time for a sick note or two ?

You are exhausted and your body has gone from 100 miles an hour down to 10 but your brain hasn't yet caught up yet and is still lapping the race track.

You can't keep all these balls in the air, and feel well with Graves Disease.

You need some time for yourself, your results show hypothyroidism and that needs to be managed to bring you into a more comfortable position for recovery from your hyper stage.

I don't know a lot about vitamins and minerals and tend to follow a few reliable people on here.

I'm with Graves and had my thyroid ablated with RAI in 2005 - I wouldn't recommend that to anybody. I now have Graves, thyroid eye disease and hypothyroidism to manage and became very unwell about 5 years ago. I found this amazing site some 3 years ago, and now am getting my life back.

You might to take a look at Elaine Moore's Graves Foundation website in the States. She has the disease and found no help in her journey back in the late 1990's so wrote a book, Graves Disease A Practical Guide, and has devoted the rest of her life to helping other people with this disease. Medical protocol is slightly different but it is a well researched and respected platform with open forums much like this one,

[middleaged in reply to pennyannie]

Thanks for the advice, I just rang my GP and they emailed me my last results, which were taken in March.

SERUM TSH Level 3.75 mu/L

SERUM T3 LEVEL 3.8 pmol/L

SERUM T4 LEVEL 11.7 pmol/L

When I was first diagnosed, this time last year, my levels were :

SERUM TSH Level -.10 mu/L

SERUM T3 LEVEL 26.3 pmol/L

SERUM T4 LEVEL 50.5 pmol/L

I had been ill for a bit, losing weight and tremors, but put it down to stress and anxiety. It was only when the Hospital rang me at 2 in the morning to tell me to go there asap that I realised the seriousness.

Obviously the readings are greatly reduced, however, the carbimazole is not agreeing with me.

[pennyannie in reply to middleaged]

Ok these look like you are now very hypo - the opposite of where you were.

Graves is stress and anxiety driven, losing weight, tremors, all well documented symptoms along with insomnia, loose bowel, and dry gritty eyes.

I notice Slow Dragon has picked up on these blood tests and has given you excellent advise, and obviously now, whatever dose of carbimazole you are on it needs to be reduced down.

[SeasideSusie Remembering]

middleaged

What were your results when you were diagnosed with overactive thyroid?

Were thyroid antibodies tested?

TSI and TRAb for overactive (Graves disease)

TPO and Tg for underactive (Hashimoto's)

What are your current results, with reference ranges, for

TSH

FT4

FT3

Antibodies

Vit D

B12

Folate

Ferritin

[middleaged in reply to SeasideSusie]

Hi SeasideSusie,

Many thanks for taking the time to reply.

I'm due for bloods next week but the lab request only asks for Biochemistry and Haemotology tests.

Biochemistry - Liver Function Tests, U/E Creatinine, Thyroid Function Test.

C-reactive protein, Bone Profile, Hb A1c, Lipids

Haemo - FBC, ESR

I've noted the ones you have mentioned. My Doctor has contacted Endocronology for a further appointment. He mentioned surgery and radiotherapy, which horrifies me.

Kind Regards

[SlowDragon Administrator in reply to middleaged]

You are legally entitled to printed copies of your blood test results and ranges.

You need to know EXACTLY what was tested when Graves' disease was diagnosed. And equally important to know what has not been tested

We see far too many people who have Hashimoto's labelled as Graves' disease

Low vitamin levels are common with both Hashimoto's and Graves. Improving these can improve symptoms

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Thyroid antibodies and which need testing

thyroiduk.org.uk/tuk/about_...

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Gluten and antibodies

chriskresser.com/the-gluten...

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

[middleaged in reply to SlowDragon]

Thanks for the advice, I just rang my GP and they emailed me my last results, which were taken in March.

SERUM TSH Level 3.75 mu/L

SERUM T3 LEVEL 3.8 pmol/L

SERUM T4 LEVEL 11.7 pmol/L

When I was first diagnosed, this time last year, my levels were :

SERUM TSH Level -.10 mu/L

SERUM T3 LEVEL 26.3 pmol/L

SERUM T4 LEVEL 50.5 pmol/L

I had been ill for a bit, losing weight and tremors, but put it down to stress and anxiety. It was only when the Hospital rang me at 2 in the morning to tell me to go there asap that I realised the seriousness.

Obviously the readings are greatly reduced, however, the carbimazole is not agreeing with me.

[SlowDragon Administrator in reply to middleaged]

You need to add the ranges on these results

Every lab is different

Obviously FT3 and FT4 were very high

Likely it is Graves' disease, as levels were very high, but TSI or TRab antibodies should be tested to confirm that

Results now look like you are hypothyroid and need dose reduction in carbimazole

TSH should be under 2

FT4 in top third of range

FT3 at least half way in range

Likely to have low vitamin D, folate and B12

Also need ferritin tested

Ask GP to test thyroid antibodies and vitamins and coeliac blood test

[Fruitandnutcase]

When my Graves was being treated I took 1000mcg slow release vitamin c with zinc every day - my pharmacist told me to take it. Also tested and made sure my ferritin, folates and B12 and vitamin D were all up at the top of their ranges. I ate a good diet, lots of fish, vegetables, nuts and seeds, no junk food or fizzy drinks and eventually I went totally gluten free.

CRP tests for inflammation and HbA1c is for diabetes so your doc seems to be covering all sorts.

[Alexkjones]

Hi. I’ve had graves for 5 years now. After lots of trial and error I manage to keep my tsh around 1.3. Anything up over 2 give a me the symptoms you describe. So you need to titrate down your carbo to lower your tsh. I found a whole 5mg tablet a day for me was too much years half a tablet was too little. So I now do one week of 5mg a day and then a week of 2.5mg a day alternatively to keep my tsh at 1.3. So reduce carbo get regular blood tests for tsh and when you reach about 1.3 try and find the right dose/regime that keeps you there. I have a lot less symptoms at this level. I too have a big job and busy life but manage to function and still climb mountains etc Alex

[middleaged in reply to Alexkjones]

Thanks to everyone for your advice and information. I'm feeling a bit overwhelmed today to be honest, don't really know what to do about the carbimazole...should I take half the dose and see how it goes? I'll definitely be contacting my doctors on Monday to ask for the other blood tests you all have advised me to have.

To top it all I've also gone through an early menopause, I'm 50 in February 2020 but haven't had periods since I was in my early 40's...my body just doesn't feel like my own anymore! Seriously need a full mot.

I actually work for the NHS, not as a nurse, I work in Procurement. It is a very demanding role, which I used to love, but at the moment I really don't have the energy for it, which really gets me down as I've always been so positive.

I suppose getting the right balance takes time, I'd just had the tests and taken the meds without really thinking too much about it. It's only now when I've taken a weeks leave and been ill with a cold that I realise just how much my body is telling me to sort it out !!!!

[ling in reply to middleaged]

Hi middleaged.

1. Please have TraB or TSI antibodies tested to confirm Graves.

2.In Graves, there is an urgent need to destress. You write that you have "a demanding job and home life". These would be the reasons why you have hit the wall and become even more ill despite already being on carbimazole, assuming this is Graves.

The exact same thing happened to me. I thought as well that taking my carbimazole meant I was medicating and on my way to being well. The doctor conveniently did not say anything about having to make lifestyle changes and getting rid of stressors. I continued to work at the same pace and lived as I used to. Soon my body gave out under me.

3.Get your meds sorted out first and that would put u on the right track to recovery. Simultaneously make lifestyle changes and totally destress. Then supplement as necessary and improve your diet to fix your immune system. All this will take time to work so you should not expect any quick fixes.

Wishing u well.

[middleaged in reply to ling]

Hi Ling,

Many thanks for taking the time to read my post and for your advice. I'm glad that it wasn't just me who thought that once diagnosed take a pill and it will be all sorted. The last thing I want is for my body to give way.

I'm going to contact my doctors tomorrow and request further bloods.

Due in work tomorrow as well, been on a weeks leave and had a nasty cold instead of enjoying days out with my granddaughter.

I'm going to have a chat with my boss and explain that the pressure needs to come off while I sort this out otherwise I'll be off on long term sick, which I really don't want to do.

[ling in reply to middleaged]

It's great to hear you are being proactive! If at all possible, take time completely off work. And when at home, rest relax eat well destress. Do not be at home and do more house work.

Remember both mental and physical stress count in Graves. So do not over exercise or over do physical activities like cleaning the house or the garden.

Knowing your TraB and/or TSI antibodies levels will be a very useful gauge of Graves disease activity in your body, and will also let you know when you should or should not come off your carbimazole.

I started a low dose of Vit D and omega 3 supplement in the early stage of my diagnosis and they have been more helpful than I expected. But I had atrocious dietary habits so I'm sure my nutrient levels were wanting. Remember, if u have not tested your levels, go easy on the supplements and start with low doses, give the body time to adjust.

Immune system. One thing tried and tested for our family, in boosting the immune system, is cooking with fresh condiments like garlic, ginger, onion. These are natural immune system boosters. A little every day will work its wonders over time. My mother in her 80s, who was constantly sick with the flu, has not come down with the flu at all, once her boosted immune system kicked in. Voila : )

[Alexkjones]

Don’t worry. You’ll get there. Its one of those conditions you have to take charge of cause the drs just have to keep you in the safe range. The problem is the range is broad and you can feel like crap at either end of the range. I’m not a dr myself so discuss with dr before changing your meds. But be strong in requesting to reduce dose. If you are on 15mg a day now I would drop to 10mg a day and get a repeat blood test in 1 months time. Ask the dr to come on the titration journey with you and agree to test your blood monthly for 3 months. Get that tsh down to 1.3 ish and then try and stabilise there. You can always do a blue horizon private test as a sanity check whenever you want. Costs about £100 for the full home Thyroid bank of tests but at least you have a line in the sand and can see where you are and you get the results in about 48 hrs. It also tests all your important vit levels. Good luck. Alex