Diagnosis

[Suegore]

I saw a private Endo tonight who was very thorough and informative . He gave me the diagnosis of Graves . I am to stay on Carbimazole and it will be reduced gradually as my levels come down . I am likely to be on it for about 18 months . Once off there is a chance of relapsing , then I may be offered radioactive treatment or possible surgery .Hopefully over the next few weeks I will start to improve as I have felt unwell for months .

[SeasideSusie Remembering]

Has he done, or is he arranging to do, all the antibody tests explained by greygoose to confirm this diagnosis?

[Suegore in reply to SeasideSusie]

Yes I got the results of Trab antibodies which were high , along side extremely suppressed tsh and high levels of T3 and T4 and ultrasound of enlarged thyroid . My grandma had it and my mum had Rheumatoid arthritis , both auto immune disorders . At least I’m in the right treatment of Carbimazole .

[SlowDragon Administrator in reply to Suegore]

Essential to test vitamin levels too

With Graves and hashimoto’s low vitamin levels are extremely common

healthunlocked.com/thyroidu...

Gluten free diet frequently helps many, many patients too

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

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

[Suegore in reply to SlowDragon]

Thankyou for info , I tested negative for coeliac but have had IBS for years so avoid gluten anyway !

[SlowDragon Administrator in reply to Suegore]

So even more reason to regularly retest vitamin levels

Many patients need to supplement to maintain optimal vitamin levels most of the time

[Suegore in reply to SlowDragon]

I've been put on a high dose of vit D by the doctor as it was really low!

[Marz in reply to Suegore]

Low VitD could indicate your Folate - B12 - Ferritin could also be low.

Are you taking important co-factors with the VitD ? I would test VitD again at the end of winter to establish a maintenance dose ...

[SlowDragon Administrator in reply to Suegore]

You are legally entitled to the actual results

Are you being prescribed LOADING DOSE

300,000iu over 6-8 weeks

Local CCG guidelines

clinox.info/clinical-suppor...

Vitamin D

GP will only prescribe to bring levels to 50nmol. But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function

It’s trial and error what dose we need, with hashimoto’s or Graves we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Magnesium is important co-factor

gluten free diet is very low in magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Getting B12, folate and ferritin tested

[Suegore in reply to SlowDragon]

Thankyou for the info 😊

[pennyannie]

Hello Sue

You might like to take a look at the Elaine Moore Graves Disease Foundation website.

This lady has Graves and went through RAI in the late 1990's finding no help with her symptoms thereafter wrote a book to help others who might be in the same position.

She is a medical researcher by profession and is at the forefront and leading research into this poorly understood and badly treated auto immune disorder.

As detailed the anti thyroid medication is blocking your thyroid hormone production and bringing you back down into range and hopefully, in a week or two, you will feel more comfortable.

Your TSH may stay stuck down at 0.01 as the TSI/TRab antibodies can ' sit ' on the TSH driving it down, and over producing thyroid hormone output, giving you symptoms of overactivity, hyperactivity. It's a bit like your foot being stuck down on an accelerator.

Your body clock has been running very fast and has been unable to turn off, bit like a pilot light that doesn't cut out. Your metabolism has gone into overdrive and though you may have been eating, for one or 3 people, loosing weight and having a fast bowel. It is essential during this period that your core strength is maintained and would suggest you get your ferritin, folate, B12 and vitamin D tested, and these need to be kept t optimal levels.

Graves is an auto immune disease that can be triggered by a sudden shock to the system, like a car accident or unexpected death. There probably is some genetic predisposition a generation away from you, and Graves thrives on stress and anxiety and so please try and relax and if working, get signed off sick and cut yourself some slack.

It will be interesting and important to start retaining copies of all the blood test results from the original diagnosis. In this way you will start to understand the ' seesaw ' you are now on as your T3 and T4 reduce and react as the doses of AT drugs are adjusted to put you back down into range and to a level of wellness acceptable to you.

This can take time and needs a skilled endocrinologist at the helm.

If you are happy on the AT medication ultimately, on a low dose, there is no evidence that long term these drugs can't be continued, and personally this has to be the better option than thyroid surgery or ablation, and it has to be in your best interest to keep this major gland which is responsible for your full body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

I have Graves and had RAI treatment in 2005, which I deeply regret, and became very unwell some 8 years later, purchased Elaine Moore's book, and learnt of my own situation, back to front.

Thanks to this amazing site in the most part, I'm now ' back in the room ' and getting on with my life, but I am having to self medicate as the NHS, when hypothyroid after thyroid treatment, do not replace the full thyroid hormone support that you once enjoyed when you had your own thyroid.

[Lora7again in reply to pennyannie]

Here is the link for Elaine Moore's site ... she diagnosed me when Doctors had told me I was suffering from the menopause

elaine-moore.com/

[Suegore in reply to Lora7again]

Thankyou 😊

[Suegore in reply to pennyannie]

Thankyou for you information , that is very helpful 😊

[Suegore in reply to pennyannie]

Thankyou 😊

[Goldengirl01]

I had similar, felt really unwell so had appt with Endo who prescribed carbimazole for next 12 months, dosage was changed several times over the year, after that, he did say you may have a relapse and I did, 5 years later but my GP refused to believe anything wrong as tsh was ok. He could not understand my symptoms of generally feeling ill with fast heart beat so rang hospital and I was advised to go to AMU when consultant said you must have infection as tsh ok. I begged him to do bloods for t3&t4 and he also said tsh is fine. He then came back and said he would add t3&4 to bloods as I’d had this problem before, the t4 range was 12-24 my result was 95 so sent me home with a bottle of carbimazole. I’m saying this because some drs and endo’s Haven’t a clue so arm yourself with knowledge. Iv had TT since then and have had to fight for T3 which I only just got 2 weeks ago because I’m a very poor converter. All the best to youX

P.s. endo at hospital did say that if I had not gone to Drs and then been sent to hospital it could have been a different story as I would have ended up blue lighted to hospital, (but would they have picked up on it there if they just looked at tsh.....scarey)

[Suegore]

How awful for you , I will bear what you have said in mind , very important information Thankyou x

[Goldengirl01]

Your welcome