any help and advice appreciated😉

[Forumjunkie]

originally diagnosed with hypothyroidism, now confirmed I have Graves, just had my carbimazole reduced from since originally starting in January which was 20 mg daily.two weeks ago reduced to 10g and from tomorrow 5mg, I’m struggling with bad aching legs, does anything else struggle if so what do you do to ease the struggle ? I haven’t really had any discussions with a gp as it’s all done on my gp.com, just looking for any advice really, do I have Graves for life? Am I exempt from prescription payments ?

[PurpleNails Administrator]

Welcome to forum.

How long were you hypothyroid?

Was your Graves confirmed? What were your TSI or TRab levels & lab range.

Those on continuous Levothyroxine can apply for medical exemption.

If on carbimazole you have to pay for prescriptions, unless you qualify for other reasons.

I set up a prepay so pay set fee as I have several prescriptions per month.

As you still have symptoms it might be your levels are still not quite right. Do you have recent thyroid function TSH, FT4 & FT3.

[Forumjunkie in reply to PurpleNails]

hi, thankyou, I was diagnosed with Hyperthyroid in January, I am taking Carbizamole, my first bloods my ts level was 57.7 but last one was 12.5, Graves was confirmed last month, I have had numerous bloods for just about everything but no discussions about them so I assume all ok, it’s just the leg pain I’m struggling with, I am happy to pay for my prescription it’s just a friend said I may be exempt as it’s for life, I have asked the pharmacist she said to ask my GP, I will next time I’m having bloods but I thought someone may know, many thanks for replying 😊

[PurpleNails Administrator in reply to Forumjunkie]

When you were originally hypo were you taking levo? If so how long?

What is TS levels? Could be TSH in which case you’d be seriously hypothyroid, or TSI. You need your exact results & lab ranges.

Never assume everything that should have been tested has, & that doctors / admin staff have properly checked the results.

Have you been referred to a specialist?

[Forumjunkie in reply to PurpleNails]

Yes the specialist but only by phone, she was the one who arranged all bloods and that’s how Graves’ disease was confirmed, always been on Carbimazole.

Jan

Serum free T4 level 57.0 pmol/L [11.0 - 23.0];

Outside reference range

Serum TSH level < 0.01 mU/L [0.27 - 4.5];

April

Serum free T4 level 15.5 pmol/L [11.0 - 23.0]

Serum TSH level 0.02 mU/L [0.27 - 4.5];

[PurpleNails Administrator in reply to Forumjunkie]

Results show high FT4 but no antibodies confirming Graves.

Hyper can be transient, it’s unusual to be hypo prior.

FT3 hasn’t been tested.

[Forumjunkie]

I think I ought to push for an actual GP appointment, I haven’t had any I got or advise given, I’m not sure if this is how I should be feeling, hopefully I will get more info and answers, I really appreciate your help and advise

[PurpleNails Administrator in reply to Forumjunkie]

GP can arrange thyroid function , but not Graves antibodies. specialist likely to do this.

Testing every 6 weeks is important to review levels & adjust dose, so you due another test if tested last April.

[pennyannie]

Hello Forumjunkie and welcome :

Carbimazole is an Anti Thyroid drug and semi-blocks your own daily thyroid hormone production so as you can see your T4 has now come back down into range and hopefully your symptoms subsided.

Unless there is a visible swelling of your neck or you have trouble swallowing, eating or breathing we are left with the possibility that you may have a thyroid Auto Immune health issue.

There are 2 AI diseases that attack the thyroid - Graves and Hashimoto's - and they both start off the same way and an antibody blood test must be run as the treatment is different.

Do you have any results there detailing either a TPO : TgAB : TRab : or a TSI : antibody?

The unique antibodies for Graves are expressed as either a Thyroid Receptor Blocking or a Thyroid Stimulating positive and over range number / range :

Auto Immune disease is when your own immune system has been triggered to turn and attack your body rather than defend it -

and currently mainstream medical have no answers as to how to solve this immune system malfunction but can prescribe drugs, such as Carbimazole, to offset the symptoms experienced while we wait for your immune system response to calm down.

Invasive treatments for Graves Disease, whether a thyroidectomy or RAI thyroid ablation will result in your being hypothyroid which is a long term chronic health condition and when your prescription is free.

elaine-moore.com for all things Graves and Auto Immune :

thyroidpharmacist.com - for all things Hashimoto's :

Should your diagnosis be Graves and you have positive, over range TRab or TSI antibodies :

The most current research is here :

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

ncbi.nlm.nih.gov/pubmed/306...

[Forumjunkie in reply to pennyannie]

lol I am also useless on posts but I think I have posted my blood results somewhere 😂

[pennyannie in reply to Forumjunkie]

I can see everything you have written so far on this open forum so if you are referring to your reply further up - yes i see a T4 dropping from 57 to around 15 - which is because you are taking the Anti Thyroid drug, Carbimazole, which is blocking your own natural daily T3 and T4 thyroid hormone production.

What we need to see is the medical evidence of the diagnosis and which antibodies were found over range and positive in your blood.

When I was diagnosed back in 2004 all my results were all back within 48 hours -

I understand delays are occurring but we do need this piece of the jigsaw puzzle and in fact, your T3 reading from this first blood test with the range when your T4 was at 57.

[Forumjunkie in reply to pennyannie]

I thought I had posted photos of my most current results but obviously haven’t lol I have loads !!!!

Haemoglobin 117-149g/L

138

Vitamin B12 197-771 ng/L

270

TSH 0.27- 4.5 mU/L

1.1

Free T4 12.8 11-23pmol/L

[Forumjunkie in reply to Forumjunkie]

Free T3. 3.1 - 6-8 Pimlico/L

Thyrotropin receptor antibody 0 -1.74 U/L

3.39

Vitamin D

25 Hydroxy Vitamin D Nmo/L

52

[Forumjunkie in reply to Forumjunkie]

This was my diagnosis after these results in January

Serum free triiodothyronine level 26.90 pmol/L [3.1 - 6.8]; Confirms hyperthyroid biochemistry.

Outside reference range

Serum free T4 level 57.0 pmol/L [11.0 - 23.0];

Outside reference range

Serum TSH level < 0.01 mU/L [0.27 - 4.5];

Outside reference range

[Forumjunkie in reply to Forumjunkie]

on Monday had more bloods resulting in Carbimazole being reduced to 5mg Daily

< Back

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Serum TSH level 2.0 mU/L [0.27 - 4.5]; Please note that thyroid hormone, tumour markers, haematinics, hormone, troponin, HCG, BNP and digoxin

assays may be subject to interference in patients

receiving biotin therapy.

[pennyannie in reply to Forumjunkie]

I'm guessing that Thyrotropin Receptor antibody is the TRab as detailed earlier and that the range is 0-1.74 and your result was 3.39 :

So a positive for Graves Disease.

[Forumjunkie in reply to pennyannie]

yes that’s correct

[pennyannie in reply to Forumjunkie]

How much Carbimazole were you started on and has this now been titrated down as your T4 is now near the bottom of the ranges which means you are likely feeling more hypothyroid than you need to :

Do you have a Free T3 reading to go with the Free T4 reading of 12.80 ?

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

Then your core strength vitamins and minerals tend to nose dive through the ranges leaving you depleted further of wellness- compounding your health issues.

We need optimal vitamins and minerals to support us through this first phase of ill health and suggest you look to getting your ferritin level to around 100 - folate to around 20 - active B12 75++ ( serum B12 500 ++ ) and vitamin D to around 100.

What symptoms took you to the doctor and are you finding these symptoms now relieved, and or, with new symptoms popping up ?

Do you have any issues with your eyes, dry, watering, light sensitive ?

[Forumjunkie in reply to pennyannie]

I was originally on 20mg a day, two weeks ago dropped to 10mg and Yesterday to 5mg I am using drops for dry eye .

I initially felt loads better shortly after starting Carbimazole but then it kind of returns, fatigue aching legs all of which initially made me see the GP as the fatigue was very abnormal .

Free T3

4.82. 3.1- 6.8 o ok/L

[pennyannie in reply to Forumjunkie]

Please ensure any eye drops, sprays, lotions, or even the heavy duty overnight gunkier preparations in tubes are all Preservative Free - even those prescribed by the NHS.

Yes, your symptoms are now sounding similar to those tolerated when hypothyroidism but your body has been in a very heightened state and you may well feel extremely ' shattered ' :

Are you being managed at the hospital - and check ups now scheduled for every 6 weeks or so ?

You might like to take a look and Thyroid UK which is the charity who support this forum - thyroiduk.org

You might also like to pop over to the Thyroid Eye Disease Charitable Trust as there are now, specialist eye clinics attached to hospitals throughout the UK where you can find specialists in this field alongside endo's who advise on treatment options and dose titrations to try to mitigate further damage to the eyes.

tedct.org.uk

[Forumjunkie in reply to pennyannie]

thank you so very much for all of your time and information today, I certainly have a lot of reading over the weekend, thanks again

[pennyannie in reply to Forumjunkie]

With Graves you can experience either blocking or stimulating antibodies and these 2 extremes of symptoms are interchangeable and at any one time you will have one set dominating over the other -

and there will be phases when they have burnt each other out - leaving you exhausted -

and you just have to hope they don't want a replay.

All the AT drug does is buy you time while we wait for your immune system response to calm down.

Quite why this has happened to you now is the 64millio $ question and you are the best placed person to know the answer.

Everyone's journey with Graves is unique to them - though stress and anxiety do seem to be common triggers and Elaine Moore - you have the link above - has sections on alternative and more holistic treatment options and suggestions on life/work balance and relaxation techniques.

There is likely a genetic predisposition, probably an aunt or uncle a generation away from you with a thyroid health issue ?

[Forumjunkie in reply to pennyannie]

thankyou 😉