Graves disease symptoms

[G172125]

does anybody else still get symptoms from graves diesese months after being on medication? I was diagnosed in September and I am still suffering from palpitations. Shakes, anxiety and a sore mouth?

[PurpleNails Administrator]

Welcome to forum.

Sounds like the medication might not be at the right level to ensure your thyroid levels are in the right place.

How long since your dose was adjusted?

You might need more medication if levels still high. Or you might need less if being pushed into hypothyroidism. Symptoms can be surprisingly similar at either end of the scale.

What are your blood test results? TSH. FT4. FT3. Was Graves diagnosis confirmed with correct antibodies testing ?

Sore mouth ? Is this a new symptom? Mouth ulcers can be a sign or greater issues if on carbimazole or PTU. You need to check with doctor for a full blood count to check white cell count. This should be explained fully in patient information leaflet.

[SlowDragon Administrator]

very important to test vitamin D, folate, ferritin and B12 too

Are you currently taking any vitamin supplements

Palpitations and anxiety can be symptoms of being hypothyroid ……perhaps Carbimazole needs reducing

Essential to test thyroid levels early morning…..TSH, Ft4 and Ft3

Have you definitely had Graves’ disease confirmed by high TSI or Trab antibodies

Important to also test TPO and TG antibodies for autoimmune hypothyroid disease (hashimoto’s)

[Buddy195 Administrator]

Welcome to the forum !

Just checking that your Graves was confirmed by correct antibody testing, as outlined by SlowDragon and PurpleNails ? I was initially diagnosed as Graves, largely due to symptoms (including TED) but, after encouragement from members here, I tested privately and found I’m actually hypothyroid with Hashimotos.

Anxiety is the worst thyroid symptom for me and is always worse if my thyroid medication or key vitamins are not optimal. I also experience fast pulse/ palpitations when medication is either under (or conversely over) range. As others have said, do test key thyroid vitamins.

I’ve had lots of mouth issues in the past and followed forum advice to test vitamins and supplement accordingly. A good B Complex raised my folate and alleviated mouth issues. I find that a magnesium supplement also helps with anxiety; I take glycinate, as I fine this gentle on the stomach, although other types are available.

[G172125]

SlowDragon PurpleNails Buddy195

I was diagnosed in September 22 when I was admitted in to hospital. Blood tests were :

TSH <0.01

FT3 33.4

FT4 82.6

Thyroid peroxidase AB 316.6

Thyroid autoantibodies 10.50

I was started on 60mg carbimazole but started having an itchy rash 3 weeks later so was switched to PTU

14th oct bloods

TSH <0.01

FT4 17.8

Doctor halved my dosage after this blood test.

28th oct bloods

TSH<0.01

FT4 15

28th November bloods

TSH 6.81

FT4 6.9

Dr asked me to stop taking medication for three weeks so my levels could go back up and then start taking a smaller dose.

Bloods 10th jan

TSH <0.01

FT4 19.8

FT3 9.7

I’ve had a full blood count done multiple times now because I keep getting mouth ulcers and a burning sensation in my mouth and loss of taste . But my dr said they all came back within normal range apart from haematicrit which was just below normal? I thought I would be feeling better by now but I’m still getting a lot of palpitations, shaking, ringing in my ears, brain fog, ulcers, cracked tongue, burning mouth loss of taste and brittle Nails. I’m having my bloods done again at the end of the month and the dr is testing vitamin d and b12 this time. I have had a vit d and b12 deficiency twice before

[PurpleNails Administrator in reply to G172125]

Can you add ranges please. Ranges vary between labs - Usually shown in brackets eg 

TSH       <0.01                (0.35 - 3.50)

Antibodies are often shown as (0 - 34) or <34

In November you were very hypothyroid.  When levels fluctuate greatly symptoms can linger past that time, ie it takes time to recover from being very hypo or very hyper - jumping between the two can be worse than gradual changes. 

Stopping & starting antithyroid is best avoided, best to stay on very low dose - but once hypo I see why doctor stopped & restarted on lower dose. 

Frequent monitoring should help adjust doses more appropriately.  Always arrange a test 6 weeks after a dose change - until stable levels are found then longer may be acceptable. 

It’s good they monitored white cell count & that is not affected.  

Burning mouth a B12 symptom so good it being tested.  

Change in taste likely medication side affect.  Hopefully that should ease. 

TSH not reliable focus on FT4 & FT3.  Is FT3 high again on last test? 

PS forgot to add

TPOab (Thyroid Peroxidase antibodies) & TGab (Thyroglobulin antibodies) signify autoimmune and are not specific to Graves.

Doctors are assuming it Graves based on high thyroid level but transient hyper occurs with autoimmune thyroiditis (Hashimoto’s) the damage ultimately results in under active thyroid.

Thyroid-Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb) are associated with Graves & therefore should be tested before assuming you have continuous Graves hyper not transient hyper.

[G172125]

PurpleNails

TSH ( 0.49-5.23)

FT4(11.5-22.7)

FT3(3.5-6.5)

Thyroid autoantibodies (<1.80)

Thyroid peroxidase ( 0.0-59.0)

I did have my b12 tested in September aswell and that was 234 (211-911).

Yes t3 was high again in last blood test but t4 was in normal range?

I have an appointment coming up soon with the endocrinologist so I will ask about hashimotos and ask for trab and tsi test .

I had no health problems before this. Do you know what could have caused this?

[PurpleNails Administrator in reply to G172125]

FT4. 19.8 (11.5-22.7) 74.11%

FT3 9.7 (3.5-6.5) 206.67%

As you can see from % comparison - FT3 disproportionately higher that FT4.  

This means as PTU lowers levels your FT4 is likely to go under range before the FT3 get down to range.  PTU has more of an affect on reducing FT3, but is still an issue.  

FT3 driven Graves occurs in around 15% of cases. 

Option: discuss “block & replace” regimen.  Higher dose of PTU to block all function then a replacement dose of levo (L-T4) restoring FT4 level & balancing out FT3 levels.  

Don’t use the term “Hashimoto”, In UK doctors use the reference “autoimmune thyroiditis” although they ignore the autoimmune aspect.  

It’s not known what causes Graves to occur but many report it often starting after a “trigger” physical trauma or loss or stressful time.  

Many benefit from strictly gluten free diet.

Your B12 is extremely low in ranges.  Optimal is over mid point if range.  Hopefully someone more knowledgeable will see & advise. 

[pennyannie]

Hello G172125 and welcome to the forum :

Graves is an auto immune disease and something has triggered your immune system to turn on you and attack your body, rather than protect it.

There is generally a genetic predisposition and maybe there is someone in your family, maybe a generation away from you with a thyroid health issue.

Graves is known to be a stress and anxiety driven AI disease and can be triggered by a sudden shock to the system like a car accident or an unexpected death of a loved one - or possibly appear totally out of the blue.

Graves is usually diagnosed when it starts attacking the thyroid and / or eyes - and is said to be life threatening if not medicated and an Anti Thyroid Drug, either Carbimazole or PTU prescribed.

All the AT drug does is ' buy you time ' while we wait for your immune system response to calm down and hopefully then your thyroid hormones fall back down into range and your thyroid reverts to normal and your symptoms are relieved.

It can be a bit of a roller coaster of symptoms as with Graves you have, at any given time, either stimulating or blocking antibodies driving your T3 and T4 production, causing extremes of symptoms and there can also be period where these two burn each other out with you feeling relatively normal as your immune system calms down. but then, your immune system may well " take off " again.

The most recent research is suggesting that the longer the patient stays on the AT medication the better the outcome for the patient -

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

It seems we are still waiting on a formal diagnosis of Graves with either a TR ab or a TSI - antibody readings being positive and over range.

There is another thyroid AI disease Hashimoto's which actually starts off the same way as Graves and why we do need to know which antibodies were positive as Hashimoto's is not treated with an AT drugs - and Hashimoto's is positive TPO or TgAB antibodies.

When metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food, no matter how well and clean you eat.

We need to maintain a strong core strength to support us through illness and suggest you ask for ferritin, folate B12 and vitamin D blood tests as if these vitamins and minerals are low they will likely compound your health issues further.

You might like to read around a little until we know for sure what you are dealing with :

For Graves - elaine-moore.com

For Hashimoto's - thyroidpharmacist.com

[G172125 in reply to pennyannie]

There is a family history of overactive thyroid on my mums side of the family but I don’t think it was autoimmune. I wondered if it could of been triggered by my pregnancy 5 months before i was diagnosed. My discharge notes from hospital say confirmed graves thyrotoxicosis and my endocrinologist said it was grave’s disease but I am definitely gunna ask for further tests at my next appointment now just to make sure

[PurpleNails Administrator in reply to G172125]

Non autoimmune hyper is unusual. Was it a toxic nodule or multi nodular goitre, do you know how it was treated?

I have hyper nodule & my dad also had hyper. But he was never told cause & had early surgery (didn't know there was medication or RAI).

[G172125 in reply to PurpleNails]

My Nan had a goitre and had an operation to have her thyroid removed. Her sister had RAI and my uncle is on medication but none of them have said it’s graves or autoimmune

[PurpleNails Administrator in reply to G172125]

Thyroid peroxidase AB 316.6. R ( 0.0-59.0)

Thyroid autoantibodies 10.50 (<1.80)

Well you definitely have some form of autoimmune - TPOab are over limit (positive) “Thyroid autoantibodies” also appear to be positive too. - Is there more description of this test as I’m not entire sure which antibody it’s testing.  Either Thyroglobulin antibodies - or TSH receptor? 

I think it might be TRab, in which case it is accepted as evidence of Graves’ disease.

If it’s TGab it’s insufficient for confirming Graves.

[pennyannie in reply to G172125]

Does this discharge note from the hospital detail which antibodies are positive and over range ?

[G172125]

this is the letter

Letter

[pennyannie in reply to G172125]

Ok - there is a result there - bottom line - a thyroid receptor antibody - and this is a positive for Graves Disease - commiserations -

and Thank you :

[pennyannie in reply to pennyannie]

You might like to read around Graves Disease on the Elaine Moore Graves Disease Foundation website - elaine-moore.com

I found Elaine's books and research the most well rounded of everything and everywhere I searched.

Her books are a little technical and i think the focus more towards the medical profession and her website much more patient oriented and in much smaller ' chunks ' - there is a section on complimentary and alternative and more holistic treatment options and thoughts on life/stress work balance and what you can do for yourself to help in your understanding of this poorly understood and badly treated auto immune disease.