Hashimoto's and graves

[Cablogin]

Has anyone seen an endo for hashimoto's and graves on the NHS? I'm wondering what to expect? My symptoms have become a lot worse lately it's like I'm jumping between both..

[Jaydee1507 Administrator]

I've had a look back on your previous posts and can't see anything mentioning Graves. Why do you think you have that?

Is the Endo you are seeing one from the list? You can email Thyroid UK at [e-mail] for a list of T3 friendly endo's.

You would be best getting private bloods done to take with you to the appointment although they may want to repeat them.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception..

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

[Cablogin in reply to Jaydee1507]

I'm already gluten free and eat a high protein and high fibre diet I eat very little processed food now.

I have done a private blood test which shows I have graves and hashimoto's it's been a long time since I last posted and o ly found out I have these in 2022 June through thriva blood test.

A doctor has said I need to see an endo I just need to provide my blood results which I am doing on Monday. I do not have any current blood results right now, I have been tested for hla b27 which one came back as slightly low that could indicate I'm having another autoimmune problem too

I've had joint pain, a rash, and hypo/hyper symptoms changing randomly.

[Jaydee1507 Administrator in reply to Cablogin]

So which antibodies were positive for Graves?

If you are currently under replaced then it is common to have 'hyper' like symptoms.

This is also the case if you have less than optimal vitamin results. Highly recommend getting vitamins tested and posting results here for comments.

Peoples experiences vary a lot with Endo's. Unfortunately as most are diabetes specialists they can often be a disappointment.

You might tryalso removing dairy from your diet. By that I don;t mean lactose, I mean actual dairy, so any milk product, also appears on food labels as whey, casein and more.

Do you always get the same brand of Levo at every prescription? People often find brands are not interchangeable. You can ask your GP to write the name of your preferred brand in the first line of the prescription so you always get that brand.

[Cablogin in reply to Jaydee1507]

My antibodies are thyroglobulin (graves) at 137.8 and peroxidase antibodies (hashimoto's) are 600+ I felt really well through the summer until winter hit and I went down hill very fast 10 weeks of joint pain, fatigue, rash, crazy hunger (without weight gain to add) I have lost 150lb so I understand cal in and cal out I was overeating without any weight gain.

I'm currently dealing with mood swings, I've had 2 periods in 9 days apart I'm having bursts of energy to nothing and same with my hunger.

[Jaydee1507 Administrator in reply to Cablogin]

Thyroglobulin antibodies are not specific to Graves. They are a marker for autoimmune thyroid disease and positive in 85% of people who have Hashimoto's.

southtees.nhs.uk/services/p...

The two types of antibodies linked with Graves’ disease include TSI (thyroid-stimulating antibodies) and TBII (thyrotropin binding inhibitory immunoglobulins).

You could visit a local contraceptive clinic that might be able to help you with mood swings and period issues.

You sound terribly undermedicated and likely have a low FT3.

[Cablogin in reply to Jaydee1507]

Okay I thought one of those meant graves, but my symptoms are definitely bad or worse in the winter.

Period issue is a new one never had issues with my cycle before but they've been a bit weird last 3 times.

Hopefully I can see someone in the future to help me get my levels on track. Thanks

[Jaydee1507 Administrator in reply to Cablogin]

Worse in the winter likely to mean you are under replaced.

What many people who struggle with hypothyroidism find out is that they have to fight for what they need to feel well. You need to get a bit clued up about the condition and what will help you. Find some solid information like medical papers, quotes from NICE guidelines, print them off and take along with you to your appointment to try and educate your doctor. This goes for Endo's as well as GPs unfortunately.

Taking time to have a good read around here will be a good start. There are some pinned posts with good evidence, it will also make you feel a lot less alone.

Good luck.

[helvella Administrator Thyroid UK in reply to Cablogin]

I think someone has misinformed you.

Thyroglobulin antibodies do not define, or cause, Graves. Thyroglobulin is a protein substance which is inside our thyroids. When our thyroids are damaged - and that is often due to autoimmune issues - some of the thyroglobulin ends up in the bloodstream and the immune system makes antibodies to remove it.

Graves is caused by TSH-receptor antibodies (TRabs). Some TSH-receptor antibodies affect TSH receptors very much like having very high levels of TSH.

There are three families of TSH-receptor antibody. Some stimulate, some block, and some seem to do next to nothing. It is the stimulating ones which cause Graves and should be used to diagnose it. Also called Thyroid Stimulating Immunoglobulin (TSI).

You can get both Thyroid Peroxidase antibodies and Thyroglobulin antibodies along with TSI in people who have Graves.

[SlowDragon Administrator]

Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

EXTREMELY important to test vitamin D, folate, B12 and ferritin at least once a year

What vitamin supplements are you currently taking

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...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Graves Disease antibodies test via Medichecks

Private blood draw required

medichecks.com/products/tsh...