Hello everyone

[Ponkysue]

Newly diagnosed in Feb with Graves. Interested to hear everyone’s stories

[pennyannie]

Hello Ponkysue and welcome to the forum :

Do you have any blood tests to hand and can confirm that you have positive and over range Graves antibodies which are generally written as a TSI ( worded as a thyroid stimulating ) and or a TR ab ( worded as a thyroid receptor blocking ) antibody.

What mediction are you now taking, and how are you feeling ?

Do you also have your original blood test at diagnosis and have a TSH, T3 and T4 results and range please so we have an idea where you are in this first phase of this disease.

We ask this question as there is more than one reason why you have become hyperactive :

The only way to distinguish which auto immune disease you have, if you have one at all, is by the antibodies present in your bloood test result - and we have seen people being diagnosed with Graves but then found when their antibodies were analysed not to have Graves Disease.

Graves is an auto immune disease that attacks the thyroid :

The thyroid is the victim in all this and not the cause :

The cause is your immune system attacking your body and read Graves can be caused by stress and anxiety ?

I do have Graves Disease and am post RAI thyroid ablation back in 2005 and just wish this forum existed when I was looking to understand what had happened to me.

You might like to start reading up of the Thyroid uk website who are the charity who support this amazing forum.

[Ponkysue in reply to pennyannie]

hello thanks for the welcome. My original blood test back in Feb was Free T4 87; Free T3 30.1; No Serum TSH at all. Later confirmed to have TSH receptor for Graves at 25.6. After initial high treatment with Carbimazole I dropped down to T4 of 20 but this has recently gone back up to 40 with symptoms back too. I have neck goiter.

[pennyannie in reply to Ponkysue]

Hey there :

So as I'm catching up you do have Graves and have a goiter and soon to go onto Block and Replace treatment with a consultant wanting to operate and remove the thyroid.

Is the goiter currently pressing on your wind pipe and causing problems for you, and were you even aware that it was there ?

Graves is an auto immune disease and while your TR ab antibodies remain high and over range there is little point in reducing the anti thyroid drug so Block and Replace is applied. In this way while your own thyroid hormones are Blocked by the anti thyroid drugs, a measured dose of T4 thyroid hormone is prescribed to Replace so you shouldn't fall too far into hypothyroidism and have even more debilitating symptoms.

The root cause of Graves is not well understood in medical mainstream and Elaine Moore has worked extensively on the subject as she too has Graves and went through RAI around 22 years ago and finding no help with her continued symptoms looked to herself to find some answers.

She is a medical technologist and has written and published several books and runs the Elaine Moore Graves Disease Foundation website and offers an open platform, much like this amazing forum, as well as offering one to one advice to anybody dealing with Graves Disease, and you might like to dip into the website and start reading up.

I see in another post you were asking about Dr A Toft - please check out him out :

I haven't checked that you have this article though it is available on here somewhere : Thyroid Hormone Replacement - A Counterblast To Guidelines was written by him in his retirement years from the NHS :

The contents of this article apply to all of us currently living with a thyroid health conditions and it is a bit wordy and needs reading several times ( but that could be just me - as I'm dyslexic ) but so relevant and I quote from page 3 :

" I am so concerned about the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism."

I don't know the severity of your goitre, nor the complications of this added issue.

What I do know is that I would have preferred to stay on the AT drugs long term, but I think my age at 56 decided my fate.

I knew nothing of Graves, I was well on the AT drugs and continued to work, but told the AT drugs were to dangerous to stay on long term and was told I was to have RAI the following year and I would be better, but possibly hypothyroid but that if that did happen it was more easily treated.

I have been very ill with the long term consequences of RAI treatment and only started my understanding of Graves some 12 years post this medical intervention when I found no help nor understanding of my continued ill health through the NHS.

Ultimately once triggered, Graves is for life, it waxes and wanes, it seems stress and anxiety driven for some, and we need to learn how to roll around, rub along, with this poorly understood and badly treated AI disease that doesn't go away even when you have lost your thyroid, and for some people, the medical interventions simply compound their problems.

I am now self medicating and buying my own full spectrum thyroid hormone replacement having been refused anything other than T4 thyroid hormone replacement through the NHS - and am much improved thanks in the most part to Elaine Moore, Thyroid uk and this forum.

[PurpleNails Administrator]

I’m hyper for another reason. I have my history on my profile.

Do you have any questions or can we offer you any help?

Let us know what test you’ve had to get diagnosed and what treatment are you having?

When a newcomer joins and says they been diagnosed Graves the most important point is was diagnosis confirmed? As doctors often treat all apparent hyper as Graves with confirming by way of antibody test or even full thyroid function.

Obtain your test results a print out with ranges or via online access. You can post on here for further advice.

This is what information you need.

TSH

FT4

FT3

Folate

Ferritin

Vitamin D

B12

TPO antibodies

TG ab

And if Graves suspected

TRab or

TSI

Generally carbimazole treatment is given for around 18 months as hyperthyroid can be transient and Graves can go into remission. Medics then tend to recommend definitive treatment such as surgery or Radioactive iodine treatment. Such treatment result in hypothyroid and referral back to GP for management. Medics view hypothyroidism as an easily managed condition (and the majority of the time it).

NHS usually offer Radioactive iodine treatment as 1st option which ablates the thyroid, if you have contact with young children, pregnant women or eye disease this treatment wouldn’t be suitable.

Do all the research you can and don’t be rushed into a decision.

This link will take you to the thyroid uk hyperthyroid information section.

thyroiduk.org/if-you-are-hy...

Elaine Moore is also very informative.

elaine-moore.com

[Ponkysue in reply to PurpleNails]

thank you for the welcome

[Ponkysue in reply to PurpleNails]

hello thanks for the welcome. My original blood test back in Feb was Free T4 87; Free T3 30.1; No Serum TSH at all. Later confirmed to have TSH receptor for Graves at 25.6. After initial high treatment with Carbimazole I dropped down to T4 of 20 but this has recently gone back up to 40 with symptoms back too. I have neck goiter.

[PurpleNails Administrator in reply to Ponkysue]

Was your carbimazole dose altered? Is common to start high and reduce down often by half. It can take some time & quite a few dose adjustments to get a stable level.

Do you have repeat tests scheduled. I was tested 6 weekly initially, then covid postponed regular monitoring and the specialist wrote to me and said as I’m “more or less stable” I should be ok to test in a few months time…

What are your symptoms? Were you offered any other medication to help with symptoms? eg propranolol?

[Ponkysue in reply to PurpleNails]

Hello I was at 20mg with Carbimazole ... had been on that for about 3 weeks having come down from 40

[PurpleNails Administrator in reply to Ponkysue]

FT4 Was 40 you had 20mg carbimazole for 3 weeks and it was retested at 20?

It would continue to drop quite quickly at that rate. I think it should have been adjusted to at least 15mg per day if not 10mg and retesting.

Do you have the range with your results (ranges vary between labs) FT4 may be in range. Was FT3 are tested too

[Ponkysue in reply to PurpleNails]

Sorry to be clearer:End Feb T4 was 87; TSH 0.003; Serum free Tri was 30.7

Went onto 60 mg carbim per day.

Brought down to 40mg after two weeks.

Blood test mid March T4 was at 20 so dropped to 20mg per day.

Next test it had gone up to 40

[Ponkysue]

So now have been put up to 40mg per day with Thyroxine starting in 2 weeks

[PurpleNails Administrator in reply to Ponkysue]

Ok so titration hasn’t done the trick they are now attempting block & replace… the levels are fluctuating unexpectedly so the higher dose will totally block your thyroid while thyroxine replaces.

[Ponkysue in reply to PurpleNails]

I think that’s the idea. But my consultant thinks that I would be better off just having thyroid removed and be done with it.

[PurpleNails Administrator in reply to Ponkysue]

How do you feel about that idea? Has the consultant discussed what options are available and if they have a recommendation?

[Ponkysue in reply to PurpleNails]

I am nervous about surgery because it’s so definite and doesn’t meant the Graves Disease goes away.

[PurpleNails Administrator in reply to Ponkysue]

It much easier for the doctor to remove your thyroid as being hypothyroid is deemed safer & easier to treat than being hyper, which needs more careful monitoring and specialist management. After surgery your care can be passed back to be managed by GP with less frequent monitoring of TSH and prescribing thyroxine. I do believe that in most cases the outcome is good, on here we see the examples of difficult outcomes.

You might decide surgery early on is right for you but it must be in your interests with consideration your own circumstances taken into account, not on the doctors terms…. Doctors are adhering to a standard protocols written with cost & efficiency factored into the equation.

I was contacted shortly after first hospital appointment & was informed during a 2 min phone call that RAI was my treatment plan. I been taking carbimazole less than 3 months. The doctor wouldn’t discuss options or any of my queries, saying it would all be on the paperwork…..it wasn’t.

I phoned various departments and eventually spoke to a technician in the nuclear department, he told me the safety instructions I was after would be advised at the time of the treatment. Not very helpful when I have both work commitments and am the main carer for family members with complex needs.

So I filed away that form & it’s still there 2 years later, unsigned, with 4 of the - out of date - British Thyroid foundation hospital patient information leaflet they keep sending to me.

While I’m well & managing on carbimazole I don’t intend to return that consent form.

[Ponkysue in reply to PurpleNails]

Thanks for your reply. While I do think that “get it over” would be good I am very nervous of the putting on weight after the op - a lifetime of eating disorders mean that it weighs heavily on me and affects my mental health hugely.

[NIKEGIRL]

Hi. Welcome. I am with Graves as well. TSI, TPO and trab antibody positive. My levels are just as high as yours. How do u feel on the carbimazole? How do u feel with regards the condition and what do want to happen?