I was diagnosed with Graves back in October 2021. No specialist appointment at that time, just a prescription left with GP receptionist to start taking ASAP. I was prescribed 100mg of Propylthiouracil. This was reduced to 50mg a day at my next check in (I can't remember when this was but not too long after diagnosis). Everything was going really well, I thought this medication was life changing as I'd been feeling unwell for years and told all tests were fine, I finally felt I had a really good quality of life again.
I had my regular bloods done in Sept this year, had a call from specialist to advise increase meds back up to 100mg. My next appointment is Tuesday 22nd (next week). I feel absolutely horrendous, I feel just as I did prior to being diagnosed (palpitations, swollen throat, pain in back/shoulder/hips/ribs, cannot sleep, dry skin, feeling of impending doom all the time! and quickly losing weight). I don't have my blood work results at present, I will request these to be printed out for me next week, but is it even possible with the dosage I am taking for these symptoms to be due to overactive thyroid?
I have been to my GP as I'm feeling so unwell but he prescribed me Propranolol for the palpitations and advised he xould see my blood results and thought they looked normal, but wait to see what Endocrinologist says.
I have only had 1 face to face appointment since diagnosis with very little explanation as to what this diagnosis means for me. What questions should I be asking at my next appointment?
I am reading all about vitamin tests which I was totally unaware of, should I be requesting these?
Any advice would be appreciated thank you
PS I am taking Propylthiouracil as been trying to conceive for many years and had a few rounds of (unsuccessful) IVF this year so understand this is the only safe medication for me?
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JerseyMiller
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JerseyMiller ' is it even possible with the dosage I am taking for these symptoms to be due to overactive thyroid?'
Anything is possible when it comes to thyroid disorders 😔 The symptoms you describe could even be because you've swung too far the other way into hypOthyroidism. Symptoms of hyper and hypo can be similar in some people. Or the Propylthiouracil isn't working for you and you need a different thyroid hormone blocking medication.
The only way to know for sure what's going on is to look at the blood results.
Gravs is an auto immune disease for which there is no cure - your thyroid is the victim in all this and not the cause as the cause is one of your immune system having been triggered to attack your body and with Graves it generally attacks the thyroid and eyes.
The NHS generally allocate a window of around 15-18 months for treatment with a Anti Thyroid drug such as Carbimazole or Propylthiouracil ( PTU ) with PTU recommended for younger women of child bearing age.
The idea is that the AT drug blocks further new own daily thyroid hormone production and literally ' buys you time ' while your T3 and T4 levels fall back down into range and your symptoms hopefully relieved, and while you wait for your immune system to calm down.
Some patients are treated with Block and Replace whereby a high dose of the AT drug is prescribed totally blocking their own natural production and also a measure of T4 thyroid hormone replacement is also prescribed so the patient's T3 and T4 do not fall too far through the ranges and experience the equally disabling symptom of hypothyroidism.
It can feel a bit like being on a seesaw of symptoms - it's exhausting - your body is under tremendous stress and your whole system overwhelmed, exhausted, tired and wired, weight loss, with a ravenous appetite, a total brain / body mismatch and a mental and psychological turmoil of thoughts and emotions.
With Graves there can be both blocking and stimulating antibodies driving your body into extremes of hyper and hypo symptoms and there will also be periods of relative wellness when these 2 extremes burn each other out leaving you feeling relatively ' normal ' for you.
The most recent research is suggesting that the longer the patient stays on the AT drug and better the outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...
The other options are invasive, a thyroidectomy or RAI thyroid ablation both of which result in your not having any natural thyroid function and reliant of medication for the rest of your life . ncbi.nlm.nih.gov/pubmed/306... - though not recommended if wishing to have children so you should not be considered for RAI thyroid ablation anyway but just for reference.
It comes down to the degree of inconvenience being suffered by the patient while we wait for the immune system to calm down and it certainly reads as though you have been through a lot of inconvenience and your health and well being in a downward spiral throughout this first phase of the disease.
You might like to read around Graves and you might find the sections on Elaine Moore's Graves Disease Foundation website on alternative and complimentary treatment options of interest - elaine-moore.com
You might like also dip into Thyroid Uk - the charity who supports this patient to patient led amazing forum. thyroiduk.org
I have Graves Disease and was treated with an AT drug and had RAI thyroid ablation the following year in 2005 but I am at the end of the age scale and at that time 56. I deeply regret this, though I wasn't given any options and told the AT drug was too dangerous too stay on long term so drank a toxic substance - I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and now self medicate and being ok.
This has given me a great insight thank you for the reply.
Did the RAI cause the eye disease? Would you have continued with AT meds if you'd had more options back then?
I feel so under-informed. My brother also has graves and has been able to come off all meds and doing really well so think I had tunnel vision of how this would be for me, glad I found this forum there's so much information to digest and seems like lots of support/advice available
I knew nothing and was totally compliant and trusted medical mainstream in 2003/4.
I became very unwell about 8 years after RAI and when I started my research - as I was left very unwell by the NHS and referred to as a conundrum, details on my profile page.
There is likely a genetic predisposition to Graves as we are looking at an auto immune disease and maybe looking a generation back from you, there is an uncle or aunt who have a thyroid health issue.
Finding the trigger to your immune system response and you are halfway to solving your own health issues - stress and anxiety are commonly seen as Graves drivers but everyone's journey with this poorly understood and badly treated AI disease will be different and why there's no straightforward clear path, like for like, for everybody.
So try looking into Elaine Moore's website - it is all a bit daunting - but just dip in and out as you feel comfortable - I found her first book Grave's Disease - A Practical Guide very hard to read - but then I am dyslexic - I think Elaine initially wr0te more for the medical fraternity and find her website more user friendly and with a worldwide following - and where there is an open forum much like here where patients can ask questions and she does answer to personal emails, if she is available as she has been unwell and post surgery and cancer treatment.
When metabolism isn't running exactly right for the individual - either too fast or too slow - core strength vitamins and minerals seem to nose dive through the ranges as no matter how well and clean you eat your body isn't able to extract key nutrients through your food.
I would ask the endocrinologist to run tests for your ferritin, folate, B12 and vitamin D if these haven't been actioned recently, and I would hope he is managing you on your Free T3 and Free T4 levels and not just a TSH reading.
There should also be paperwork confirming your diagnosis of Graves Disease and detailing which thyroid antibodies were found over range and positive and the justification for prescribing an anti thyroid medication.
There are 4 main thyroid antibodies and the 2 exclusive to Graves Disease are generally expressed as either a TSI or TR ab : though some people have Graves and Hashimoto's running together but treatment for Graves takes precedent as left untreated Graves is considered life threatening.
TPO - thyroid peroxidase : usually Hashimoto's AI thyroid disease.
TgAB - Thyroglobulin : " " " "
TSI - thyroid stimulating : Graves Disease
TRab - thyroid receptor blocking : " "
Hashimoto's AI thyroid disease initially presents similar to Graves but is not treated with AT medication and why it is vitally important to know which antibodies were found positive at diagnosis.
Had my endocrinologist appointment and she says my symptoms are likely anxiety and there's no way they are thyroid related. I will pop the results here for some help but it does look to me that they are pretty in range and now I'm questioning why I feel like this (I felt exactly the same for years prior to being daignosed) wondering if I'm going insane. There are no FT3 results here and I've not been tested for any vitamins as the posts above suggest.
So the result of September 2021 was when you were prescribed the AT drug and the following results are with you taking the Carbimazole.
What is the result of this TSI blood test ?
Did the endo know of and comment on why s/he is ignoring the TSI result ?
Your results do not look typical of Graves and I don't understand how an endo can treat or dismiss without a TSH, T3 and T4 result from the same blood sample.
I should talk to your doctor as s/he may be better informed and better placed to question this endo's assumption that you are not with a thyroid health issue.
This doesn't make sense as you say you have a letter stating you are TSI positive.
OK - so this page shows a TSH at 0.01 - with over range T3 at 7.40 and T4 at 25.80 :
So there is a history of hyperthyroidism within the family and apparently there are no eye symptoms being experienced and there is a palpable goiter.
So quite possibly it is the goiter is causing your over range readings and symptoms as it would seem you were undergoing test for infertility when Graves was diagnosed.
Your T3 and T4 are only just over range and most Graves patients have intolerable symptoms which take them to the doctors and with T3 and T4 levels much higher than yours.
I don't know about goiters - but this goes on to say that you do have a diagnosis of Graves and found with positive TSI antibodies - though there is no reading.
Your diagnosis was made due to undergoing tests for infertility and your treatment is to be continued with the PTU for around 15 months while you proceed with trying to conceive and you will be closely monitored and followed up should you become pregnant.
So this all sounds like standard treatment as far as this letter goes :
You may well be dealing with stress and anxiety because of the situation you find yourself in as under going infertility treatment - I don't know but would imagine I'd be stressed if this were me.
Ok - this this last page just details that your TSH has risen a little bit and your T4 has come back into range though there is no T3 result but they were both balanced when over range and just hope you T3 has dropped proportionately, but realistically a T3 should have been run as well.
So no, the dose of PTU is to be reduced so to stop your T4 dropping too far through the range as you will then likely experience the disabling symptoms of hypothyroidism.
As explained previous the PTU simply blocks your own new thyroid hormone production so now the T4 has dropped back down into range the AT drug is reduced down so to try and keep the T4 level balanced within its range.
Quite where in the range your T4 needs to sit for you to be well is the question and it can take great skill and much time to find a balance of T3 and T4 that sits right for you.
Ask your doctor to run the vitamins and minerals to you, you might be lucky, but if not, there are several companies listed on the Thyroid UK website :-
You mention feeling as though you are going insane - the thyroid affects most, if not all of your body's functions, including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism and as detailed previous Graves tends to be a stress and anxiety driven auto-immune disease.
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