So the carbimazole is working and I do feel less ‘fast’ .
My GP wants to double the carbimazole to 10mg and test in 2 weeks . Private Endo wants to remain on 5mg and test in 4 weeks NHS Endo (who I haven’t even seen yet) has told GP to tell me to stop carbimazole and test in 4 weeks.
All this coupled with US that found a Hashi-looking thyroid, many nodules (to be expected at 57) but one that looked different so FNA’d.
Any of this sound familiar to anyone? Hashimoto hyper phase? Toxic nodule? Subclinical hyperthyroidism?
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Your GP is not an expert ignore them and stick to your endocrinologist’s advice. If you get any trouble from them get the endocrinologist to write to your GP who does not specialise in anything except coughs and colds etc
Why would the private endo know more about it than the NHS endo? That doesn't make any sense. I would go with the NHS advice because it seems like the others are hell bend on raising the TSH, which is the wrong thing to do at the expense of the Frees. The OP will end up very hypo if she continues with the carbi - especially if it is Hashi's and not Graves'.
Most NHS endocrinologists are singing from the same hymn sheet. At least a private endocrinologist will act in your interest. Do you personally have experience of dealing with the NHS?? I have and I am entitled to express my opinion which is my own. She can make her own decisions who advice she wants to take!
I've had plenty of experience with the NHS. Not for thyroid, it's true. But for plenty of other things and I wouldn't trust any of them any further than I could throw them. But that still doesn't mean that a private endo is any better than an NHS endo - he probably does both, anyway. And it's not even about NHS vs private, it's about common sense: struggling to raise a TSH that possibly won't even rise at all is not good practice. The important numbers are the Frees and they are dropping rapidly.
How do you actually know it won’t rise?? Mine has in the past. Everyone is different and you should know this I know you have a lot of knowledge greygoose but stop talking down to others who don’t know as much as you asking nicely!
I will leave this thread now as can feel my blood pressure going up
Whether it rises or not is irrelevant because it's the least important of the three numbers. The most important is the FT3. And I didn't say it wouldn't rise, I said there was a possibility it wouldn't rise.
Sorry but I fail to see to whom I was 'talking down'.
Yes that is the problem you don’t think you are and you think everyone is suffering from Hashi’s. You thought I had it at one time remember? Well I don’t have it so don’t advise people who suffer from it I just share with them my experience and what worked for me
And what works for you? I have never seen any of your posts where you share your own personal experiences with other members. Just an observation
If you want to know what worked for me just look on my profile, it's all there.
If you think I'm talking down to you, that says more about you than it does about me. I just talk, and if you don't like the way I talk, don't talk to me.
Fine by me. I think you told me to stop speaking to you before. I have read your profile you take T3 only and are in your 70s and live in a village in France. Just now and again show some compassion for your fellow sufferers I do.
That was my take on it too as my frees look ok (T3 a bit high still). TPO over 300 so definitely positive, TG also positive, TRab unable to get in a primary care setting and NHS Endo refusing to get more hands-on in my care.
So, it sounds more like you have Hashi's than Graves'. Your GP made an unsubstantiated diagnosis and possibly put you on the wrong treatment. Doubling your dose would be madness. If it's Hashi's the levels will come down by themselves, anyway.
In any case, TRAB is not the definitive test for Graves' because it can also be raised in Hashi's. TSI is better.
Hi. Just read your bio and the more I read others’ on here I realise we are, in the main, in the hands of Dr’s who don’t understand thyroid disease. Scary. When I told my GP the nodule was on my isthmus she corrected me and said it was on my thymus - only a completely different location/glandular purpose but hey ho! I think our energy levels are compromised enough without added issues navigating NHS Drs’ shortcomings.
I am now realising I’ll probably never have a definitive diagnosis (GP said they can’t test TRab in primary care setting) so I’ll have to figure it out with the help of valuable experience from you all.
It is sad isn’t it. I have spent the last 15 years discussing thyroid disease with others in the USA and have joined loads of different sites to gain as much knowledge as I can
Can I just confirm there was a blood test for Graves which was a negative -
and we are looking at a nodule and Hashimoto's Auto immune disease ?
I'd be inclined to ignore your doctor - as it looks like they just looked at your TSH -
which is under the range - BUT with a T3 and T4 ' in range ' -
Your T4 is tracking at around 51% through its range with your T3 a little high at around 74% -
Ideally once on the AT drug - we need to manage / maintain thyroid hormone levels at around 45/ 50% through the ranges - where it's deemed you are likely to be ' as comfortable ' as you can be - and neither tolerating hyper nor hypo symptoms.
It's a fine call depending on what actual information one is working from - if with Graves you stay on the AT drug at the lowest possible dose to maintain your T3 and T4 at around mid-point in the ranges - if not with Graves I'd compromise between the Private and NHS doctor - and drop the AT drug by half - and take 2.50 mg daily - and see how you feel there :
Who do you intend to go forward with - NHS or Private - watch out for an ' ego ' or two !!
Your core strength vitamins and minerals need to be maintained at optimal levels to help support you through this phase of ill health - so please arrange and share here with forum members your ferritin, folate, B12 and vitamin D levels so we can advise where optimum levels tend to be - s if any of these are low in the range your health issues maybe compounded further than necessary.
Ok then - as I understand ' things ' - you complain of not being well - eventually a blood test is run - the Lab run what are called ' cascade blood tests ' and start off with a TSH - and if the TSH not in range - run a T4 test - and then a T3 test - and then will automatically run an antibody blood test so to diagnose from this initial blood test - and state what the medical evidence is - and advise what is going on and what is to be prescribed.
So, I'm sure the antibody test has been run and sitting in someone's computer which may even be saying - results not conclusive - arrange a thyroid scan / ultra sound for nodules.
So anyway - no one wants those hyper symptoms and if these are only just subsiding stay put until you feel comfortable with a view to reducing the AT drug further - when you feel ready - and if this is wrong - you are in the control seat and can just go back up to where you were more comfortable on the AT drug -
I'm afraid the NHS system seems backed up throughout the country and many are waiting much longer for O/P appointments -
P.S. Just remember blood tests tend to run a few weeks behind symptoms being tolerated.
As a rule - Hashimoto's is not treated with an Anti Thyroid drug :
0.01 to 0.1 is a rise. It’s still under range, but dr hasn’t looked at frees.
What was time of test. TSH is higher in morning & lowers throughout day.
You only been taking a months sometimes it takes 6-8 to fully settle. TSH might rise more yet. FT4 & FT3 might lower or balance might change.
I would stay on 5mg carb for now.
Was TRAb or TSI tested?
If scan shows hashis appearance more likely a hyper phase. Ultrasound won’t confirm if over functioning - toxic. A uptake scan would show if hyper funtioning but doctors tend to treat high levels often by TSH.
I would be useful to know because hashis will decline to under active levels and a toxic nodule will continuously produce.
Carbimazole temporarily pauses production of new hormone. So it helps if levels are high but not if they are naturally dropping. It doesn’t affect thyroid or antibodies so should confuse diagnosis.
Bloods done at good time.
Thyroid is quite a vascular organ & vascularity is usually present in most nodules. It’s often increased in thyroid in both hashis & graves autoimmune as it’s a sign of swelling / over stimulation of thyroid.
The stethoscope test is to detect a bruit - which can be heard or palpated as a “thrill” in 1 of the thyroid arteries (2 inferior 2 posterior). When the thyroid is very swollen & stimulated the blood flow is increase & this can be detected. Associated usually with graves.
When were vitamin D, folate, B12 and ferritin levels last tested
Have you had coeliac blood test yet
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
Thanks for the Medichecks Graves test link SlowDragon . I shall organise this for New Year now. I’ve had lots of ‘your numbers aren’t high enough’ but it’ll be good to know for sure.
Vitamins were done back in October - apart from Ferritin, all were sub-optimal. I haven’t started the vitamin route simply because GP is wanting to do bloods every 2 weeks since starting carbimazole. I’d be on/off B12s too much to get a gauge on anything.
There’s so much ‘horse before the cart’ when it comes to thyroid disease treatment. Crazy!
Then wait 10-14 days to assess before adding another
Starting with vitamin D assuming that was low
What were vitamin D, folate and B12 results
In week before blood tests, when you stop vitamin B complex, consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)and continue separate B12 until results are high enough
2000 vitamin D daily. That’s all. This test was done when my Thyroid functions were running high. Previously in July, when my TSH was 3.5, they were low. Wondering if there’s a correlation there?
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A new Endo with attitude
Grr
I`ve gone underactive with carbimazole - plz help with advice.
