Advice please

[RachelatSkyfall]

Hi All, I was diagnosed with an overactive thyroid in January 23, I had felt unwell during 2022 but thought it was all menopausal, I had cancer removed from my face and my best friend died all in the October and I had covid in the December, I had become very anxious, hot, angry, tired hungry and started having palpitations and breathlessness which is when I went to the doctor, I was started on Carbimazole but developed a severe rash on my face and all over itching so was stopped and referred to an Endo who put me on PTU, I continued itching and the rash became worse so was told to have definitive treatment Rai or surgery, I opted for surgery which after a few cancellations I am now down for the 30th of this month.My question is do I need surgery I really do not want, I have been on sick leave since February as the rash on my face was so bad and I felt so ill, I did pay private to see a consultant dermatologist who gave me a 4 month course of antibiotics and said I had roscea and was not convinced it was the thyroid medication. After reading on this site I have gone gluten free and try not to have artificial sweetners and I am looking in to the vitamin side of things. I have emailed my Endo asking if I can continue being monitored if I do not have surgery but have not heard back. I have included my test results but would really appreciate some advice as I just don't know what to do, and at the moment I am not feeling to bad in myself. Thankyou for any advice.

TPO Antibody (0.05-25.0), and Trab 6.84( ≥ 3.10 IU/L: Positive)

12th JAN

TSH 0.05 (0.27-4.2)

T3 8.6. (3.1-6.8)

T4 25.2 (12.0-22.0)

27TH FEB

TSH 0.05

T3 13.4

T4 32.1

13TH APRIL

TSH 0.05

T3 7.9

T4 22.4

18TH MAY

TSH 0.05

T3 6.1

T4 17.7

14TH JUNE

TSH 0.05

T3 5.4

T4 16.2

24TH JULY

TSH0.05

T3 4.6

T412.5

1ST SEPTEMBER

TSH 0.2

T3 4.1

T4 13.5

25TH OCTOBER

TSH 0.74. Did not test T3/4

[PurpleNails Administrator]

Welcome to forum.

Please add lab ranges - they vary between labs.

Your last TSH was normal by most ranges. What a shame your FT4 & FT3 wasn’t tested.

It’s possible your levels are lower than September which are far from high by most ranges.

After a period of hyper your TSH can remain low & an inaccurate reflection of thyroid levels.

You have positive TRab & that confirms Graves, what was your TPO? You included range (but I don’t see results). TPO often positive with Graves but very high elevations could indicate you have Hashimoto’s as well.

How long have you been untreated? as within 6 weeks you can see if your hyper appears continuous or if it has hopefully settled in the normal range.

At present your levels do not look high.

If level’s ultimately rise it it important to treat it as long term untreated levels is not healthy. if medication can’t be used permanently options.

Have nutrients been tested, folate, ferritin, B12 & vitamin D? Often low when thyroid abnormal.

[RachelatSkyfall]

Many thanks PurpleNails, apologies my TPO was 61 (0.05- 25.0), I have added the ranges as I only put them. On the January results12th JAN

TSH 0.05 (0.27-4.2)

T3 8.6. (3.1-6.8)

T4 25.2 (12.0-22.0)

27TH FEB

TSH 0.05 (0.27-4.2)

T3 13.4 (3.1-6.8)

T4 32.1(12.0-22.0)

13TH APRIL

TSH 0.05 (0.27-4.2)

T3 7.9 (3.1-6.8)

T4 22.4 (12.0-22.0)

18TH MAY

TSH 0.05(0.27-4.2)

T3 6.1(3.1-6.8)

T4 17.7(12.0-22.0)

14TH JUNE

TSH 0.05(0.27-4.2)

T3 5.4(3.1-6.8)

T4 16.2(12.0-22.0)

24TH JULY

TSH0.05(0.27-4.2)

T3 4.6(3.1-6.8)

T412.5(12.0-22.0)

1ST SEPTEMBER

TSH 0.2(0.27-4.2)

T3 4.1 (3.1-6.8)

T4 13.5(12.0-22.0)

25TH OCTOBER

TSH 0.74. (0.27-4.2)

I have not taken ant PTU since July as I felt so depressed in mood and now I wonder if it was because my T4 was so low? The Endo would like me to take 50mg twice a day of PTU, she is aware that I have not taken anything since July but appears to ignore that and at the moment because I feel like my self for the first time since I don't know when I don't want to restart them at the moment, but I don't forget how I felt at the beginning and that the tablets did help. I just really want to give my Thyroid a chance I was at my lowest point when offered the definitive treatment and would of done anything to feel better and even though it was supposed to be urgent since March ,the op has been cancelled 4 times and now after reading other people's stories and the replies I wonder if I could prolong the surgery. I am due to have bloods this Monday. I was last tested for B12 folate in January and told it was normal.

B12 309 ( 180-1000)

Serum folate 8.1 (>4.0)

That's all I have had tested, the g.p is not interested as I am under the Endocrinologist and I have only met her once in March , I have to email her secretary to get any results which is usually about 3 weeks after the test, which is very frustrating.

[pennyannie in reply to RachelatSkyfall]

Your B12 is very low - yes it is in the range -but at the bottom end - we need optimal viamins and minerals and look to be a good 50% through any NHS range - as a starting point -

I now aim for a serum B12 at around 500++ ( active B12 around 75++ ) - folate around 20 -

ferritin at around 100 and vitamin D at around 100:

You can edit an existing post by just pressing the More button -

You can reread everything written by you and all your replies by pressing the icon top right on this screen saying Profile :

Conversely you can read anybody elses' posts and replies by pressing the icon alongside their name in any reply they make to you.

We can all read everything you are writing on this question and generally speaking most posts are answered as fully as possible within around the first 24 hours of posting and any new information deserves a new pst/question so all forum members get to try and help and support you.

[Torquaygirl]

Rashes especially on the face are seen in auto immune disorders and you are more prone to other auto immune disorders once you have one. It may be worth GP doing bloods for disorders like Sjogrens/Lupus and rheumatoid just to exclude. Have a look at versus arthritis website for more info on these disorders. All of these can make you feel rotten. It took me over 10 years to be diagnosed with Sjögren’s, the average is about 7 years, as the symptoms can be quite obscure and blamed on a lot of other things! Good luck and hope you feel better soon.

[RachelatSkyfall in reply to Torquaygirl]

Thankyou Torquaygirl, Thats interesting, I was tested for lupus and was negative, but I will look in to the others, I don't think people realise the impact the thyroid has on the whole body and mind, its been a roller coaster of a ride so far! I hope you are feeling well it sounds like you have been through it to.

[Torquaygirl in reply to RachelatSkyfall]

Thanks, not been so good over last few months, unfortunately. Getting there just waiting to get off the heart pills so I can have thyroid scan to see what’s going on. Unfortunately that pill is adding to thyroid problems .

Good luck with tests

[pennyannie]

Hello Rachel and welcome to the forum :

Graves is a stress and anxiety driven auto immune disease and you cetainly have had a lot to contend with and can see how your immune system has been triggered by all of these upsets in such a short space of time.

Graves is poorly understood and badly treated AI disease for which there is no cure -

but time to allow your immune system respnse to calm back down -

and Graves can be life threatening if not medicated -

and the NHS start the patient on a Anti Thyroid drug to block the T3 and T4 rising higher and higher putting the patient into a ' holding position ' -much like a plane waiting to land - while we wait for your immune system response to calm down.

We do now have research suggesting the longer the patient stays on the AT drug the better the long term outcome for the patient -

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

However if you can't tolerate the AT drugs there is no option but RAI thyroid ablation or a thyroidectoomy on the NHS.

So - first question - have your Graves antibodies been run again ?

Have yor eyes been affected - swollen, dry, gritty, painful, excessively watering. ?

Some people seek out alternative, more holistic treatment options - Thyroid uk - the charity that supports this forum - hold a list of specialist thyroid consultants -

maybe email admin at thyroiduk.org - asking for the patient to patient list of recommended specialist as there maybe someone on there who can advise.

I 'm with Graves post RAI thyroid ablation 2005 and didn't start my learning curve until round 2015 when very unwell and with no answers forthcoming from the NHS.

I found Elaine Moore's first book - Graves Disease - A Practical Guide alarming since I had already had this RAI treatment - and now Elaine ( post RAI treatment herself for Graves ) is acknowledged as a leading researcher into all things Graves and AI - and her website has sections on alternative and more holistic treatment options and there is an open forum - much like here - but it' s Stateside - but definately worth dipping into.

elaine-moore.com

[RachelatSkyfall in reply to pennyannie]

Hi Pennyannie, Thankyou for your reply, no I have not had the graves antibodies done again, back in March I agreed to a urgent thyroidectomy and have really been left to it since , If I had not insisted, and sometimes had to use the duty of care line, I would not have been having regular blood tests. The consultant dermatologist I paid to see about the rash on my face was not convinced it was the Thyroid medication that had caused it but diagnosed Roscea, which I read somewhere that there was a link between the two. I just don't understand if I have not been medicating since July and my levels are OK is it necessary to have surgery and give my Thyroid a chance ? My op date is creeping nearer and I want to.make the right decision armed with all the facts.

[pennyannie in reply to RachelatSkyfall]

Well - I would understand an urgent thyroidectomy to be within a week or two of the decision - so don' t quite understand why you are still waiting some 7 months on ?

But this has given you time to reflect, and understand better what is entailed and that living without a thyroid may not be the only option for you.

So, according to the dermatologist - maybe the AT drugs can be tolerated.

I would check out Thyroid UK list of specialist and just see if any offer more holistic treatment options and read around Graves as with or wthout a thyroid you will need to become your own best advocate.

Graves can wax and wane throughout one's lfe once triggered -

but if without a thyroid the symptoms are not life threatening - only life life limiting - and in my experience totaly ignored by mainstream medical.

If you doctor is unable to run the Graves antibodies there is a private company listed on the Thyroid uk website who can - Medichecks offer it as a one off blood test - think it's listed as a TSH Receptor Stimulating Antibody :

Do you have any other readings for your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D as these all need to be up and maintained at optimal to support you through this first phase of Graves - and ultimately for the rest of you life- whatever you decide to do.