I was referred to endocrinology in September last year and have my first appointment with them next week.
Got my blood test on Monday and TSH still less than 0.01 (0.35-5.00) and T4 is 14.5 (9.0-21.0). I’ve been taking propylthiouracil 200mg daily since November.
I feel absolutely fine now.
What should I be asking the endocrinologist?
Have you had thyroid antibodies tested
TSI or Trab antibodies for Graves’ disease
TPO and TG for Hashimoto’s (and Graves’ disease)
TSH, Ft4 and Ft3 tested together ….test early morning ideally before 9am
You really need to get vitamin D, folate, ferritin and B12 tested too
My GP will only check TSH and T4? I had positive TRAB and TPO antibodies in September. Just not sure what to expect from the endo appointment and if there’s anything I should be asking?
So ask endocrinologist to retest everything
Ideally you would have got full thyroid and vitamin testing done yourself privately before test
Didn’t realise I should have had other tests. Will ask him next week to test
Hello again ;
It's good to read that you feel absolutely fine now and it will be interesting what ' absolutely fine ' looks like in relation to where your T3 and T4 sit :
Too low a level of T3 for you and you will start to experience symptoms of hypothyroid just as too high a level of T3 for you and you may start to experience symptoms of hyperthyroidism.
If any doubt, there is a full list of both hyper and hypo signs and symptoms on the Thyroid UK website who are the charity who support this forum.
The NHS generally allocate around a 15-18 month window with treatment of anti thyroid drugs for this first phase of this disease and the hope is that within this time frame, you find remission and can come off all medication.
You spoke about adding some T4 back into your medication in one previous post and i explained this is called Block and Replace and this treatment option maybe offered to you when you see the endocrinologist.
Keeping your AT drug, PTU at a high level totally blocking your own thyroid hormone production would eventually cause your T3 and T4 levels to fall too far through the ranges with you becoming hypothyroid and suffering equally disabling symptoms - adding back in some T4 thyroid hormone keeps your T3 and T4 levels at a measured level within the ranges which should keep you with the minimum, if any symptoms.
Graves is an auto immune disease and your thyroid is the victim in all this and not the cause as the cause is one of your immune system attacking your body.
The NHS consider Graves Disease life threatening and believe that long term being hypothyroid is a better option and that you will be better managed in primary care.
Graves is said to be a stress and anxiety driven AI disease and there is likely a genetic predisposition maybe with someone within your family a generation away from you who had/has a thyroid health condition.
Graves can be triggered by a sudden shock to the system, like a car accident or the unexpected death of a loved one, or it can come on, totally out of the blue, and currently there is no cure for this poorly understood and badly treated AI disease.
You might like to read around Graves Disease - elaine-moore.com
other links you may find interesting ; thyroiduk.org
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
Thanks for replying. I lost a close family member to Covid a couple of months before being symptomatic. My twin has autoimmune hypothyroidism and my Mum has Rheumatoid Arthritis so maybe predisposed to autoimmune disease? I’ve stayed on the same dose of PTU since November and don’t seem to have gone hypo amd have been having blood tests every 8 weeks or so. My TSH is still below 0.01 but my T4 is in the normal range?
The TSH is irrelevant - what is important is your T3 reading :
Graves Disease antibodies will be distorting your TSH readings as they can tend to ' sit on ' TSH receptor sites driving down the TSH which causes the over production of the thyroid hormones.
T4 is inert, and a storage hormone - T4 needs to convert in your body to T3 the active hormone which the body runs on, and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Please also arrange to get your core strength vitamins and minerals tested as these tend to nosedive when your metabolism isn't running exactly right - and you need your levels of ferritin, folate, B12 and vitamin D checked out.
If you want you can share your blood test results and ranges with forum members and everything and anything can be explained to you if you wish.
P.S. What is your sister dealing with Hashimoto's AI disease ?
Ok, so why do they not test T3 when checking blood? Surely if they know you’re hypo or hyper thyroid then they should test it?
My twin has been hypothyroid since she had her first child 28 years ago. She was told it was autoimmune and hormone related? She takes 200mcg of thyroxine a day. I’ve become autoimmune hyperthyroid while menopausal. Not sure if hormone levels make a difference though.
Hi
Because most doctors are totally fixated on TSH levels, Its how they determine dosage of meds, and if yours is in range then any persistent symptoms are imaginary. If you're lucky they might include FT4, but they rarely test FT3. I don't know if it's also a cost issue. Sometimes it's the labs themselves who will refuse an FT3 even if a GP has requested it.
Its stupid, it's irrational but that is how they are taught to treat thyroid in medical school. Despite thyroid issues being extremely common the training doctors get on how to treat it is passing at best.
It’s unforgivable with Graves disease
It's generally women who experience these issues and mostly diagnosed at around puberty, or after giving birth or at around menopause so at times of considerable change within the human body.
The endocrinologist will need to see a current TSH. T3, and T4 blood test result and you might get this full set prior to the appointment - so if you do, if you post it on here it can be explained to you.
You can organise your own blood tests, many of us do as in primary care it seems doctors just work from TSH values which are not comprehensive and if a TSH is in range no further action is deemed necessary, despite the patient still not feeling well.
Currently doctors in primary care are not allowed to prescribe T3 - Liothyronine - so even if the blood test showed a T3/T4 imbalance and a medical need - you would need to be referred to an endocrinologist to sanction a trial - this all costs more money and with my cynical hat on I think if they can't see the problem then there's nothing to treat.
20 odd years ago doctors could run all the relevant blood test and prescribe both T3 and T4 and restore balance to these two essential, vital hormones.
The guidelines talk of ranges, and if your results fall in the ranges you are considered ok - but - it is not that simple as it is about where in the ranges you feel well that matters.
The differential within the ranges is the difference between being unwell, exhausted, with labels of chronic fatigue / fibromyalgia suggested to being full of energy, happy, and having a full life and being optimally medicated.
What were your blood test results at diagnosis - prior to starting on Carbimazole did they run a T3 then - I can't remember ?
My first results were
TSH - <0.01 (0.35-5.00)
Free T4 - 30.4 (9.0-21.0)
Total T3 - 6.6 (0.9-2.5)
Thyroid Peroxidase antibodies - >1000 (<6.0)
TRAB - 6.9 (<2)
I’m in Scotland and they only do total T3
Ok - so it seems you are dealing with both Hashimoto's and Graves as both sets of antibodies are showing over range and positive - TR ab for Graves and TPO for Hashimoto's AI thyroid disease.
There is no treatment for Hashimoto's and as the gland is systematically damaged by this AI disease causing erratic swings and levels of thyroid hormone production the gland becomes too damaged to work well and the patient needs the support of thyroid hormone replacement, firstly with T4 - Levothyroxine and likely T3 - Liothyronine when the gland becomes totally disabled.
As mentioned before Graves is seen as ' life threatening ' and must be treated with AT drugs to block your T3 and T4 thyroid hormone levels from keep rising.
The antibodies ' sit on ' your TSH receptor sites forcing down these receptors, forcing T3 and T4 levels up : bit like keeping one's foot down on the ' gas ' pedal :
Your T3 and T4 are over range and next time your have all 3 blood test results you'll likely have a low, suppressed TSH if the antibodies haven't gone away, and you should see a lower T3 and a lower T4 - maybe ' in range ' as this all depends on the severity of the antibodies in this first phase of the disease, for which the NHS allocate around a 15-18 month window of treatment with anti thyroid drugs.
Yes, I've noticed that in Scotland they use total T3 - rather than Free T3 - and I do not know how this correlates with a Free T4 reading - however both these are over range - and that's the point.
P.S. Do you have any issues with your eyes ?
PPS : thyroidpharmacist.com
My optician said my eyelids were retracted. My eyes seem ok but I’ve developed eye bags and some puffiness above one of my eyes. My endo appointment is on Monday. My last bloods were taken on Wednesday
OK - so here is another question for your endo next week, explain about your eyes, and hopefully you will be referred to a Graves eye consultant - or at least someone who has dealt with these issues before :
If your eyes are dry, burning, or weeping, you may find relief with OTC products but please be sure everything you use is Preservative Free :
Do you have a copy of these results from last Wednesday ?
TSH still less than 0.01 (0.35-5.00) and T4 is 14.5 (9.0-21.0)
Ok - so your TSH will be low suppressed and your T4 is down from 30.40 at diagnosis to 14.45 - so just over halved - after around 7 months on 200mcg PTU daily.
So your T4 is now 45% through it's range.
If your antibodies are still raging it's likely that you still need to block your own thyroid hormone production - the question is now, by how much PTU ?
As you feel very well at this level of T4 you don't want it falling any further as it will likely be compromising the T3 reading that we haven't got.
Looking bck I see you said you had a goitre - is that restricting you in anyway, eating, breathing, or has it disappeared since being on the AT drug PTU ?
This needs to be mentioned to the endocrinologist - along with your eyes - so we have another question for you for this coming week -
I’ll definitely ask about my goitre and my eyes tomorrow and will update after my appointment
Not convinced I had a good appointment with the endo! I was in and out within 10 minutes. He checked my thyroid and confirmed I have a goitre, also checked my pulse rate and looked for a tremor. He said any weight I’ve lost will be gained again.
I’ve to stay on the same dose of PTU until TSH starts to rise. To have repeat bloods in 3 months then again in 6 months.
He’s not concerned about my eyes.
I asked if I can have t3, B12, Folate, Ferritin and Vitamin D checked but he said there’s no need.
If my TSH stays low he says I’ll need surgery or radioactive iodine. I’ve to see him again in 6 months although he was a locum so probably won’t be there by then!
Sounds like not only does he not have a clue - he’s not going to be sticking around long enough to deal with the consequences of dismissing all your concerns.
Sorry if that’s blunt - but he’s really just looked at TSH and because that’s low he not taken into account how much your FT4 has dropped. Is he not concerned the FT4 (& FT3) will drop making you hypothyroid and causing you symptoms ? (no he’s probably not, he rather your TSH got into range, and how you function & feel won’t concern him.)
Sometimes the TSH doesn’t respond that quickly. (Or at all) mine hasn’t and it’s years later.
He says your eyes are ok - but he’s not a specialist, would he really know? He should know about TED but as it’s not his “department” he’s probably not focused on it.
He doesn’t want to test FT3, Folate, ferritin, B12 or vitamin D tested. FT3 is usually the overall source of symptoms. High FT3 = hyper, low FT3 (Even with high FT4) = hypo. He’s only interested in the TSH this is why -you- don’t need it.
Poor nutrients = thyroid working less well & TSH appearing low or lower than It should. Being hyper deplete these nutrients and will contribute to symptoms. How can he claim they are not needed?
Saying any weight you have lost will be gained again is just not a kind or positive way of putting it. We’ve all different any way, many do regain the lost weight not everyone. We are advised to be careful having become accustomed to larger appetites.
By the sound of is he already has the mindset you’ll need RAI or surgery. RAI should not be considered if your eyes are an issue.
I think I’d test privately for FT3 & nutrients.
I got no help with my eyes either. GP said take up with endo. Endo said my hyper want caused by autoimmune and I didn’t have antibodies. Go back to the GP. GP didn’t understand. In the end the optician wrote letter supporting referral. Had 1 video appointment made in hospitals error. Was told by self called “expert” I couldn’t have corrective eyelid surgery as TED complicated it. I explained I’d been told TED wasn't an issue and wanted to know cause of eye issues & she said the notes has mentioned TED. Back on wait list. That’s been a year now.
You do have the confirmed antibodies having been diagnosed with Graves. Ask again for a referral. See GP and ask, go to optician and ask for a letter, don’t give up - early treatment for eyes can make a difference.
As I had next to no help with my eye issues, I self manage. I took 200mcg for 6 months. Then reduce to 100mcg . Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
I found warm compresses helped with this & very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water.
If you like to moisturise near your eye area use water based clear gels not cream/lotions. I did this as developed milia white spots round eye. I found the swelling reduced when I switched.
Thanks for replying. I felt he dismissed my concerns very quickly and as you said I’ll probably never see him again. After waiting 9 months to be seen I thought it would be useful to see the specialist for advice but the appointment felt rushed.
Since my initial blood test when my levels were high I feel I’ve been left alone to deal with it…my GP doesn’t seem interested either and I’ve had to ask for blood tests. When I’ve called for results I’m told the doctor has marked them normal. If I hadn’t come across this group I’d have had no idea what to expect or even know to ask for the numbers of my blood tests.
Feeling fed up with it all to be honest.
Sorry you had a rubbish appointment .
Contact the Thyroid Eye Disease charity tedct.org.uk and you should be sign posted to a specialist TED eye unit within your area.
I read that within these units you may well meet an endocrinologist with an interest in actually helping patients find the best medication levels so as to not make the eyes worse, and who can order the blood tests, adjust doses and take the lead where patients feel failed by a non specialist medical professional.
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