INCONCLUSIVE FNA ON THYROID

FNA 22 Sept got result over phone have to go through it all again. Apparently I am borderline. I am so p..d off with the NHS. It was debatable at the clinic if the nodule warranted biopsy. Decided to do it. Was assured that it would probably be benign and only doing it for routine. Have hashimos. Told if you took 100 people off bus 10 have nodules. There TSH is not at 12 with T4 now a 19 I said to no reply. I am not on meds did not get on with thyroxine. I do think a lot was to do with the low level I was on and fact not increased quick enough. Consultant told me if we were to put you on meds your TSH would come down but t4 increase its just something you have to put up with. I feel dreadful. Huge weight gain spend most of day in bed, blood pressure increased, I have a young family dreading half term. Then I see letter consultant sent to GP saying patient is asymptomatic! From what I have gleamed from Internet once these results come back inconclusive th next result is same and they recd removal which I don't want. Any advice greatly received x

[vajra]

Hi C. This may not help much - but I had a total thyroidectomy for a thyroid cancer in 2005, and did a bit of looking at the topic. This is all informal, non expert and doesn't amount to advice.

It seems that if it was a needle biopsy then anything other than a positive result is in effect inconclusive anyway since it may just mean that the wrong part of the thyroid was targeted. i.e. it could have missed a localised abnormality.

Should the needle enter a cancer, then each biopsy brings with it some small risk of seeding it outside of the thyroid - by leaking/dragging cells outside of what was a peviously encapsulated volume.

Another issue seems to be that there can be major uncertainties involved in the interpretation of the cellular changes in the samples that suggest a cancer.

There's a paper out there documenting a retrospective study of stored frozen sections from thyroids removed over a period of years in a major US hospital because of cancer diagnoses. This by a panel of US and Japanese pathologists. There was unanimous agreement by the group that only quite a small proportion of the samples actually were cancerous - suggesting that quite a high proportion of positive diagnoses may be questionable - or down to individual pathologists taking no chances.

Which if true likely has major implications for published numbers on survival rates for thyroid cancer too. i.e. many of the survivors may not actually have had a cancer as such.

Hashimotos seems eventually to destroy the thyroid, so if its advanced it may or may not be possible to reverse it. There's a few that suggest that it is possible, and a few more that suggest that it's possible only if caught in good time - and many that advise a thyroidectomy beyond a certain point.

Either way treatment seems to entail a mixture of squeaky clean mostly organic diet, avoidance of problem foods, supplementation of defiencies, treatment of specific metabolic, auto immune, gut and other problems, lifestyle changes, mind and energy work etc etc. It's likely to be a long haul...

I'm sorry, but it's a case of researching what's out there as i've no proven suggestions.

The benefit or otherwise of removal of the thyroid is a bit of a tough question to decide too.

There's a faction that suggests that once thyroid auto immune disease gets established that it's best out of there sooner rather than later - that the resulting antibodies etc mess with thyroid metabolism and interfere with achieving proper thyroid replacement during the often long period when the diseased thyroid is still present, but is not producing enough hormone. Or may over produce hormone, and as a result require other less than satisfactory treatments.

The result in either case is likely to be years of hypo or hyper symptoms and feeling unwell.

There's another that argues that it's best not to end up dependent on replacement hormone, and that it's worth going to enormous lengths to seek recovery of the thyroid.

The thyroidectomy was positive for me in as much as i'd not been able to get my hypothyroidism diagnosed and as a result had struggled for over 15 years years with steadily worsening fatigue and illness - it at least moved me into a place where the system was gangbusters to prescribe hormone.

Against that it's a bit scary to think that i live in a small country, and am dependent on avalability of imported synthetic hormone for survival - and that this supply line is likely to prove pretty fragile in the event of a major war or anything like that.

It's not bad, but I'm not convinced that replacement does quite the same job as the natural thyroid either.......

ian

[ThyroidThora in reply to vajra]

Hi Chickens12

This does not sound like good care. I had the right lobe of my thyroid removed in February because a calcified nodule was found there when I had a CT scan for an unrelated problem. I had a fine needle aspiration done to remove cells for biopsy, an ultrasound scan and camera up my nose and down my throat to check everything. I was told that it was unlikely to be cancer but I knew from my own research that there was a 60% chance that it was cancer. When I had the FNA the registrar was very dismissive until I gave him what for and told him that it was probably cancerous and he rushed the ultrasound scan through and the other blood tests. It took less than 3 weeks and my result came back scale 5 meaning 100% cancerous but they down graded it to scale 4 meaning 80% cancerous. I said 80% is cancer and they referred me to a specialist and I had my right lobe removed less than 3 weeks later and was told it was follicular variant of papillary thyroid cancer 2 weeks later when it was biopsied. In my experience and from making friends with a lady on the American thyca website Hashimoto's can lead to cancer. My American friend had undiagnosed Hashimoto's for about 12 years and they finally diagnosed it at the the same time they diagnosed cancer. Kick up a stink and don't hang about. If they suspect cancer they have targets and deadlines to meet to ensure that you are treated quickly and responsibly. You could ring Macmillan Cancer Care and they will tell you what the time scales are and what you will need to do. They also have a booklet about thyroid cancer that's very useful in preparing you for what might happen. Knowledge is power and feeling empowered is better than waiting for things to happen to and feeling not in control.

Good luck and I hope this post hasn't caused you any worry.

Keep your pecker up

[Hidden]

Thank you. I have calmed down now. The nodule was solid, has an increased central blood flow, these are all indicators of malignancy. My concerns are with the way it has all been handled. I was told results in four weeks. It has been over three weeks and because I had heard nothing I thought no news is good news. I telephoned the number I was told to ring left several messages yesterday and was not telephoned back. When I did get hold of someone told need to speak to consultant first before can give out results. I had to phone again this morning left two messages and when she did answer I was told over the phone and informed inconclusive and borderline. Borderline for what? Letter in post. Secretaries only work Tues, Wed and Thursday there is no letter in post. There will be tonight possibly. If it was not for this website I would know nothing about my condition. I was only told I could have hasimos in June when first ultrasound. I just can't believe the apathetic approach consultants have. The secretaries are on answer phone, they don't phone back. You telephone for an answer to something and you have to hang on for 15 mins listening to awful music and then phone goes dead. I am not impressed. I feel as if just a statistic that is to be collated in some report somewhere.

[Mumtoboy]

You are right that they seem to be in no hurry. I had to wait 6 weeks for a repeat biopsy after what they called an inconclusive one. Then I had to wait 4 weeks for the results, which ruined my Christmas. I would call and keep calling until you get your answers and another appointment- tell them you can take a cancellation too ( if you can attend at short notice). It's really not fair to keep you waiting and from experience, chances are the letter you get sent won't give you much information either. I had f n a biopsies for 9 years before having my thyroid out and there was never any urgency in getting the results to me- used to really annoy me!

[Hidden]

It makes me wonder if you are diagnosed with hashimos and have really high antibodies is removal not the best option?

[vajra in reply to Hidden]

There's as above a definite view to that effect C - it was fairly widely held by the ladies on the Thyca site around 2004/5 when i was looking in there. Not so much to do with the cancer risk, more because it was regarded as messing with replacement.

I saw a couple report having not felt well until they had a completion thyroidectomy...

There's no doubt that (while it may take a lot of time/not happen at all?) Hashimotos can progress to a cancer. I was never diagnosed with thyroid auto immune disease despite testing several times for anibodies - but the pathology report after the thyroidectomy in 2005 listed advanced auto immune disease.

The right lobe of the thyroid had grown down under my RH collar bone into the chest cavity - but despite this doctors had been missing it for years and years. Luckily the cancer had remained encapsulated and hadn't got into the blood supply or lymph nodes.

It was Hurthle cell - a type of follicular cancer. Maybe like Thoras.

The communication issues described were exactly what i experienced - i thought that happened only in Dublin.

I guess the problem with Hashimmotos and cancer is that as posted above it's (a) often takes a long time for the cells to finally transition into malignancy, and (b) that the diagnosis is very unreliable/difficult - so they likely call anything that looks a bit risky as malignant when it may not be.

Which might explain the rather leisurely approach.

Quite apart from whatever the risk is i hated the way the whole issue was left hanging over me for so many months. Also the next to impossibility of getting any clear information on what the risks were pre-thyroidectomy.

The fact is that in my own case the situation only became clear after the patholgist got to review my thyroid after it was removed.

The consultant (who may or may not have had more information pre op) sure as hell wasn't letting on - despite direct questioning. Perhaps this was also related to the seemingly high level of undertainty with diagnoses of this sort - maybe he didn't want to create any hostages to fortune...

ian