New to Graves

[GreenAvo]

I was diagnosed just before March 2023. Started 40 mg of carbi from 1st of March. I wonder how often would you normally get bloods and followup appointment? At the beginning of Graves? My first results before starting carbi were :TSH 0.01 (0.27-4.2) FT4 42 (11-26), FT3 10.37 (3.9-6.8). I have private endo through AXA but doctor always requests bloods thought letter to my GP. I got the first follow up in May with results: TSH 0.017 (0.35-4.9)

[PurpleNails Administrator]

Welcome to forum.

Are you saying since starting 40mg carbimazole in March, you had 1 test in may showing TSH only?

You should be having FT4 & FT3 tested too, 6 weekly with dose adjustments until your levels are stable.

TSH is unreliable - knowing TSH is 0.017 is no indication of where your FT4 & FT3 may be, you could have become very low or remained very high.

In most cases 40mg carbimazole is reduced after first 6 weeks.

Has Graves been confirmed with positive TRab or TSI antibodies? There are also reason so have hyper including transient hyper.

How are you symtoms? Have they improved? Worsened? Changed?

[GreenAvo in reply to PurpleNails]

Sorry haven't completed the post receptor antibody 6.23To continue post.. test and results: TSH 0.0.17 (0.35 - 4.94) FT4 8.8 (9.0-19.0) FT3 3 (2.9. -4.9). (Tested 24th of April, review 12 of May.Before this appointment at the end of March I had sore throat and endo was not available therefore I had to go through GP, after FBC in A&E I was told to continue taking Carbi.

Like I mentioned the first appointment to discuss results was 12 of May on the quick phone call were I expressed feeling very tired and having cramps in my neck and legs. At that time I was getting forgetful and experiencing brain fog. My period in May was very heavy. Endo asked about my weight and sleep which were not changed plus heart rate, witch dropped. My only 2 symptoms from the beginning were heart rate increase and tremble. Doc told me to take some vitamins to feel better, not specifying what exactly. Further instructions were to reduse carbi to 20mg for next 4 weeks and then again reduse to 10 for following 4 weeks, before doing follow up blood test and appointment. The letter with instructions sent to my GP saying that I do feel much better in myself, my weight and sleep stabilised, however I experience cramps. Next blood test was planned on 7 of July with follow up on 19 of July. However I had sore throat again at the beginning of June and I have started experiencing higher heart rate poor sleep. Lost appetite. Very bad night sweats. My endo was off again until July. Therefore same story as per end of March repeated. Finally I have seen my endo 5th of July for short appointment and I was told to stop carbi for 5 days and when go to 5 mg dose per day and follow up again in 8 weeks. However in the letter to GP doctor enclosed results from June A&E: TSH receptor antibody measured 2.4. TSH- 4 FT3- 3 FT4-10.3 eGFR>90 WBC 3.9. My endo sent this to my GP without ranges plus instead of 8 weeks in the letter for GP doc requesting follow up in 3 months as bloods are continuously good.

[PurpleNails Administrator in reply to GreenAvo]

This all sounds dreadful. You can not predict how levels will respond and pre plan a staged reduction of carbimazole.

Stopping & starting carbimazole is also not a good idea, it should always be a case of testing regularly levels and adjusting appropriately. Allowing levels to get low to stop & restart can be avoided.

It takes a minimum of 6 week for a dose change to fully manifest. So I’m not surprised you aren’t feeling well with so many alterations and I don’t understand why a specialist would approach treatment like this. Seems his focus is getting the number to look right as quickly as possible, rather than accounting for how that might affect your symptoms.

TSH- 4

FT3- 3

FT4-10.3

eGFR>90

WBC 3.9.

Can you please add ranges to any test result, ranges can vary so also needed. & can be different between hospital / gp in same area.

The FT4 & FT3 look particularly low (hypothyroid). The doctor has likely thought stopping carbimazole will allow them to rise, but long term they will take off again, as is the nature of Graves. Re starting 5mg carbimazole will hopefully keep stable.

TRab also look to be positive level. Again lab range required to confirm.

Is WBC low?

You need to test vitamins to know what level to supplement. For example, multi supplement aren’t recommended. As often contain cheaper poorly absorbed forms. Insufficient to treat a deficiency. So such as iodine / calcium/ iron should only be taken if know to be deficient.

[SlowDragon Administrator]

Just testing TSH is COMPLETELY INADEQUATE

Make an appointment/email GP

Request/insist on TSH, Ft4 and Ft3 tested

Plus vitamin D, folate, ferritin and B12

Has GP actually tested TSI or Trab thyroid antibodies to definitely confirm Graves’ disease

all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors

[e-mail]

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

[GreenAvo in reply to SlowDragon]

Thanks for the tip, I will make sure to do the tests early in the mornings! And than you for all the links ❣️

[Buddy195 Administrator]

As others have advised please do get correct antibodies tested to confirm Graves. I was initially diagnosed as Graves by my Endo BUT, following advice here, I found I actually am underactive with Hashimotos.

I initially saw my Endo via AXA PPP but they refused to pay for appointments after my 3rd visit, as a thyroid diagnosis is a chronic condition. My advice; do check the small print of your policy! I’ve also found that it’s cheaper (& saves time) to conduct blood tests yourself via Medichecks (or similar) and take copies to endo appointments rather than have tests at private hospitals.

[GreenAvo in reply to Buddy195]

My policy is the same and it won't cover chronic condition. I don't see the point paying for the current doctor that I have if AXA won't cover. I am debating to use NHS or look for other private endo

[SlowDragon Administrator]

TSH receptor antibody measured 2.4. TSH- 4 FT3- 3 FT4-10.3 eGFR>90 WBC 3.9. My endo sent this to my GP without ranges plus instead of 8 weeks in the letter for GP doc requesting follow up in 3 months as bloods are continuously good.

Ft4 and Ft3 look very low….possible below range

Obviously results without ranges are pretty meaningless

Recommend you test yourself FULL thyroid and vitamin levels 6 weeks after being on 5mcg Carbimazole daily

Request/insist GP test vitamin D, folate, B12 and full iron panel test including ferritin NOW

cramps in my neck and legs.

Suggests low vitamin D

At that time I was getting forgetful and experiencing brain fog.

Could be low thyroid levels and/or low B12 /folate

My period in May was very heavy

Heavy periods will result in anaemia

[GreenAvo]

Thank you for advice 🙏 I will try to arrange all possible vitamin tests now. Also full thyroid test in 6 weeks. Any recommendations where I can get reliable thyroid test?

[PurpleNails Administrator in reply to GreenAvo]

have a look on link to companies, some have discount codes

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

Medicheck advanced thyroid good option, include function, TPO & TG antibodies & key nutrients- also CRP inflammatory marker.

[SlowDragon Administrator in reply to GreenAvo]

Links in my first reply above

Medichecks or Blue horizon

[GreenAvo]

Thanks, I will have a look ❤️

[PurpleNails Administrator in reply to GreenAvo]

Just so you know - When you reply directly under someone’s reply, they get notified of your reply to them. When you reply at “the top” or your post its a reply to your thread. It’s a bit confusing & not always easy to explain.

[GreenAvo in reply to PurpleNails]

Thanks for helping out, good to know 🙂

[pennyannie]

Hello GreenAvo and welcome to the forum ;

Graves is an Auto Immune disease for which, currently, there is no cure, and tends to get diagnosed when the thyroid and eyes become attacked by your immune system turning and attacking your body rather than defending it.

Quite why your immune system has been triggered to attack your body is the 64 million $ question and you are the person best placed to play detective.

There is generally a genetic predisposition with maybe a relative, a generation away from you, with a thyroid health issue and every persons journey with Graves is unique to them which makes it poorly understood and badly treated AI disease by mainstream medical - though stress and anxiety do seem to be common triggers

The thyroid is a major gland and responsible for full body synchronisation which includes your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism - so symptoms can be diverse, some alarming whilst others simply a bit ' odd ' :

Graves is considered life threatening if not medicated and an Anti Thyroid drug is prescribed, along with a beta blocker if your heart is involved.

All the AT drug does is block your new daily thyroid hormone production while we wait or your over range T3 and T4 levels to fall back down into range and hopefully your symptoms relieved.

As your T3 and T4 fall back down the AT drug is titrated down as otherwise your T3 and t4 can fall too far through the ranges and you then experience the equally disabling symptoms of hypothyroidism.

When metabolism s running too fast as in hyperthyroidism - or too slow as in hypothyroidism - your body will struggle to extract key nutrients through food, no matter how well and clean you eat - and low core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D will compound your health issues even further.

How are you feeling - have your symptoms been resolved, have new symptoms appeared ?

The most recent research we have is suggesting the longer the patient stays on the AT medication the better the longer term outcome for the patient :-

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

You can read further around all thyroid health issues on the Thyroid UK website - thyroiduk.org - which is the charity that supports this forum :

I found the books and website of Elaine Moore most interesting - elaine-moore.com though 10 years too late for me as I had RAI thyroid ablation for Graves way back in 2005 - a treatment I deeply regret - but I knew nothing back then and simply went along with what I was told.

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

Check out the sections on Elaine's website as to the more holistic and alternative / additional treatment options for Graves and what you can do for yourself in the way of relaxation and stress/life / work balance :

[gset]

I too was diagnosed with Graves following AF and all the other markers of graves in the blood and hospitalisation two months post Severe covid. However I can trace my symptoms back to earlier that year following my first Pfizer covid vaccine, before I had Astra Zeneca. Apart from getting the tests on antiboidies, you need to get monitored regularly as in just two months between my appointments earlier this year whilst on high dose of carbimazole 30 mg I went the opposite way, severely underactive. The delayed symptoms were aching inability to walk or exercise, having to wear 6 layers to keep warm, hair and. I also not growing, eyelashes fell out. And on top of that whilst I never had a cholesterol issue I developed a score of 5.8, my blood sugars went low and I was shaky. I got depressed and honestly felt I was going mad. On top of that I just put on weight around my middle uncontrollably and ended up 19 lb heavier. My specialist just said to me that I was hyper sensitive to the drug and now you know what people who are underactive go through! I have returned through lower doses to get back to normal ranges and am working hard to diet to get that extra weight and visceral fat which is so dangerous off. Please keep your graves well monitored so what happened to me doesn’t happen to you,

[GreenAvo in reply to gset]

I did trace my resting heart rate increase from normal 62-64 BPM to above 70 BPM , and it did start after second Pfizer COVID jab without any other changes in my life. Shame this did not trigger me earlier. I have discussed this cause of AI with family friend who has medical background and she confirmed that autoimmune disease might be triggered by any vacation. However the highest increase of my resting heart rate to above 80 BPM and kept on climbing after HSG (x-ray using iodine). Now reading about procedures were iodine is used it's clear that it can worsen thyroid problems. Well done for getting yourself back on track after everything you went through.

I do feel mentally bad, anxiety and depression kicked in, where last year I was feeling better than ever.

[gset in reply to GreenAvo]

hop you feel better soon, I feel great now and I may even be heading for remission. Stick with it but question everything so you are comfortable and have regular blood tests so what happened to me doesn’t to you. I got depressed when underactive on too much meds. Thinking of you

[pennyannie in reply to gset]

So sorry to read this :

I believe there is a known increased incidence of Graves Disease post Covid vaccine :

I hope you get some acknowledgement through the appropriate channels - though shall not hold my breath.

[gset]

partially but it’s so hard to prove as the AF and hospitalisation came 7 months later as a result of Apple Watch detecting af. However I did have thyroid results at about month 4 that indicated becoming hyperthyroid and was referred but then the nhs hospital I was referred in ( as seen there for blood condition) refused me three months later ! By then I had been urgently hospitalised!

[TLVR]

Re covid vaccinations and thyroid problems: correlation is not causation.