Not sure what to think about the Endo appointment

[bestbuddy]

Hi all. I went to see the endo as expected and was told from the outset that he was looking for hormone problems that may have been over looked by the consultant overseeing my recovery this past month. Fine I thought.

He asked me when I started on thyroxine to which I replied about 12 / 13 years ago.

When did I start to feel unwell of late? I wasn't sure I said as I am under a rheumatologist and an orthopaedic consultant for my joints, so I didn't know the headaches / double vision / high BP and palpitations were thyroid related. All I knew was that I was told I was high risk at my pre-op assessment.

I showed him the picture I posted of my swollen neck on here the other day. He said I don't need to see the photo I can see for myself that you have Hashimoto's Thyroiditis! I looked puzzled and said no one has ever tested me for thyroid anti bodies ...to which he replied 95% of patients are positive, so no need! I am so ignorant of this disease that I just thought it was an underactive thyroid?

he asked me why I was bothered by this news and I said emphatically that my Father died of thyroid cancer, his sister (my aunt) had half of hers removed, one of my own sisters has thyroid related disease and parathyroid removed.. oh, and there's haemochromatosis in the family! At this he turned to his computer and started asking me which bloods I have had done these past few years.

Forgive me for complaining but I thought he was rather unprofessional. When I told him about Thyroid UK and some of the information I had gained here on thyroid related issues (eg...Vit B12 deficiency) he said 'who said your vitamin B12 was deficient'? I told him I have been advised to have B12 injections and he said 'don't at the moment'...He sneered with the nurse and said 'don't go on the internet and that your B12 is fine at the moment' ... yet why has he included it in one of the blood tests he ordered!? When I explained that the organisation is a national body run by professionals he dismissed it out right! I am so sorry to all you wonderful people who work tirelessly to help people like me to better health. He also challenged me on my being vitamin D deficient too...'who told you'? Er, I had a test and I was 41nmol (40 being the lab ref for deficiency) so my GP suggested I self medicate to bring my levels up. I said then my levels went to 101nmol and he argued back and said 105 actually!

Then he organised for me to have a scan on my neck...for what purpose? You have just told me that by looking at my neck I have Hashi's. He must be worried about the thyroid cancer connection and also ordered many other tests including CA-19-9 (pancreatic?) and this one ..... CA- 125....er, I don't actually have a uterus or any ovaries so what a waste of NHS resources!

Coeliac panel too.... er I have been gluten free for 11 years! Another waste of NHS money. All he needed to d was ask me to find out.

I have got to see him again in 8 weeks (oh dear goodness) to discuss the (negative) coeliac panel and the neg CA 125!

Others he has included are:

chemistry profile

cortisol level

FSH/LH

Parathyroid

prolactin

Thyroid receptor (isn't that for graves?)

Any comments? Was it all a waste of time? PS....not tested for (TPOAB)

BB

[ROMM53]

Hi, he sounds a little arrogant but he has organised quite a number of important blood tests, that all sounds pretty much like a full hormone panel; so inspite of his manner, he's been pretty thorough (dunno why hasn't tested for antibodies though, or did your GP do this when you were first diagnosed hypo?) : )

[bestbuddy in reply to ROMM53]

No... As far as I know my GP did not do antibody test at the time.

[Clutter]

BB, endocrinology doctorates come with an extra helping of arrogance and sneer side order but I don't think it was a bad consult even if he's too dim to recognise our worth. None of us are professionals by the way, we volunteer, but TUK do have professional consultants and advisors on board.

He's checking your hormones thoroughly but its a shame he didn't ask you about gluten before ordering a coeliac screen and CA125 (unless your uterus and ovaries might have grown back ). He may be retesting B12 and doesn't want you to have B12 injections in case he wants to test for pernicious anaemia when the result is in. Or maybe he's just covering his arris.

He's right that over 90% of hypothyroidism is caused by Hashi's and it's unusual that he's ordered TRab although there are members positive for both Hashi and Graves. The scan will be to measure the size and type of nodules and their proximity to surrounding organs. Multinodular goiters are usually benign but a single nodule has more chance of being cancerous and will usually require fine needle aspiration (FNA) to rule it out.

I don't think it was a waste of time.

[shaws in reply to Clutter]

The old saying 'Manners maketh Man' is unknown amongst many of the medical professionals. i.e. definition = It means being respectful, treating others how you want to be treated, and using proper etiquette make a man a real man, a person truly deserving of living a full life.

[bestbuddy in reply to Clutter]

Hi clutter...I know that most of you are volunteers but I also knew that there are many advisers who are professionals on board too. It's like saying have nothing to do with the Red Cross or Mcmillan's cancer charity...ludicrous!

What I didn't post on here was his comment about my neck...I asked if it was fluid but he said no, it is a goitre. I am a little puzzled as it us just spongy and swollen and there is nothing hard to palpate. if I have been taking levothyroxine all these years, would it make my gland swell?

As I said last year when I joined, I have blithely taken this all these years and not educated myself...just became alarmed when my dad died of thyroid cancer.

BB

[Clutter in reply to bestbuddy]

BB, goiters differ, some hard, others soft and squishy. My single cancerous nodule was a small hard lump that appeared overnight. I'm sorry your father died of thyCa. Did he have a diagnosis prior to his death?

[bestbuddy in reply to Clutter]

Yes he did...he developed a lump in his neck in the October the size of a walnut...by Christmas it was like an egg....then it developed rapidly...it was enormous. The blood tests showed cancer immediately. They offered him an MRI which was very distressing for him. Then they offered surgery...then they said it was malignant and at 82 he declined...much to their relief I think as the radio / chemo would have taken him sooner. As it happened, my sister returned from New Zealand and between us and another couple if siblings when they could, we nursed him at home. McMillan got involved in the last 3 weeks of his life to give us a break. He died in the April and was told the cancer had spread to pancreas / liver x/ kidneys ( he had been type 2 diabetic for years). The whole this was harrowing to witness and be part of but he died with such dignity and grace. This was 3 years ago.

[Clutter in reply to bestbuddy]

I think I'd have declined treatment in those circumstances too, BB.

[shaws]

The old saying 'Manners maketh Man' is unknown amongst many of the medical professionals. i.e. definition = It means being respectful, treating others how you want to be treated, and using proper etiquette make a man a real man, a person truly deserving of living a full life.

It doesn't mean belittling patients and trying to appear superior.

[Chippysue]

I never mention the internet now as it just rubs them up the wrong way, we will never win a discussion with them.

Does your neck feel uncomfortable? Do you having choking sensations? Is your tongue enlarged?

It certainly sounds like you have been under medicated as you still have symptoms. I am so sorry to hear about your father. If you are not happy seeing this endo again, perhaps you could ask to see someone else? Maybe find out who is more sympathetic and will listen to your concerns. Where in the country are you?

Sue

thyroiduk.org

[Glynisrose]

Arrogant so and so!! Stay off the internet? I usually say things like 'Oh OK, that means not visiting the British Heart Foundation or any of the cancer sites? The internet is an information source and should be used. I was told at ________ hospital not to look anywhere except the BTA BTF sites which of course are about as much use as a bottle of chips!!

[Clutter]

I absolutely can't wait for a medical professional to tell me to keep off the net. The fishwife in me will be given free rein

[bestbuddy]

Yes you are right...because we want tests we go along with what they say.....the thing us, I never mentioned the internet...I said I had joined Thyroid UK (a national body) and he said 'who are they?'

I was only sent there because the consultant overseeing my medical care this pat month after being so unwell sent me to him as well as on ophthalmologist...just to check there was nothing overlooked. Every time I tried to say something, he interrupted me and changed the subject. Because the consultant who is orchestrating everything is being so thorough, I did not want to jeopardise any future consultations with him or be seen as uncooperative in any way.

Actually, I should have told him I have a degree and a post grad too... That should have put him in his place. However, I am just too complicit for my own good.

[FallenAngel]

I have very low cortisol I am taking mirtazapine I told my endo there are articles all over google that mirtazapine lowers cortisol ... he said forget that get that out of your head .. go figure , I AM coming off mirtazapine regardless.. He was a lovely man but when he asked me why do you need to know your hormone levels I don't know mine ? I just let out a big sigh .. I have pituitary thyroid issues something overlooked for almost 25 years . so please press on and at the end of the day it is YOUR health .. I waited 7 weeks for an mri scan result even the endo said that's too long why didn't you email me ? Like I knew I could email him?

To endos we are just patients they investigate and if you're lucky diagnose and treat ..

Hugs xx

[carolr]

I don't think the gluten problem is the same. It's not the same as celiac disease. It's an allergy to wheat but it's not the same.

All plants that we make flour with have gluten.

There can be a transfere between

Other substances. Like rice because you are allergic to something else.

They are really doing horrible things with this genetically modified food you could not imagine. Most people have no understanding.

Back in the 60's my uncle told me that wheat had been crossed with

a potato.

It was not genetic engineering.

But they must of cross pollinated it. Most things in that sense cross the species didn't happen.

Like sheep producing human blood products. And grass producing fish oil...

From that point of view infection

is a very real thing crossing the species.

Antibiotics be a problem.

Or they are making it a problem.

They just have not developed new ones. No money in it.

If the doctors are not going to use them. They only tell you half the story.

[honey53bee]

Hi Bestbuddy, your trip to the endo-snob sounds almost identical to a one I had a few years ago and he was a right pain in the neck! In my case the consultations were rambling and went round in ever decreasing circles. He laughed at the photographs I'd had taken of my swollen neck, bald patches on my head, jaundiced skin, etc and said for all he knew they could've been digitally manipulated. I did insist the pics were put on file as part of the evidence but I'm not sure if they're still there. My blood pressure would hit the ceiling in exasperation while he hid behind the computer screen, condemned the Internet and generally played the arrogant, aren't I important, ass. Yes mate, we've heard it all before. He did have a good endo nurse and I learned a lot from her. I would say, rise above the endo's self esteem/ego problems and focus on getting what YOU want. Take the tests and scans. That's what we pay our taxes for. He does seem to be virtually ordering everything in the catalogue so yes, he might be covering himself, or thinking about your family history, however ultimately you benefit because of all the information you'll gain. I wouldn't cut him loose yet because you've waited a long time to get into the system and I've found, once you're in, don't budge. You can then gain access to other things. With my own endo-snob, once I was in the system and knew I wasn't getting anywhere fast, I started looking for another consultant. I was completely new to thyroid world but I got there in the end. By the time I'd been told that I was a bit of a mystery and might never find out what was wrong with me, I'd run for the hills and via my GP went to another consultant who quite clearly had attended all his endocrine lectures at medical school. He looked at my crazy calcium blood levels, lengthy symptom list, went very quiet when he saw my photos, then declared me completely and utterly hyperparathyroid and later removed two juicy parathryoid tumours. As far as I know the other guy is still practising - but thankfully not on me.

Keep calm and carry on. Best wishes.

[Diane333]

Looks to me that he is checking your Pituitary gland and Pancrease as he maybe thinking that he needs to rule out a herditary condition called MEN 1 as a possibiliy as there seems to be a family history of Hormorne glands. Your family would need to be tested for the gene if it was confirmed. They would then be monitored to catch any problems early and remove effected gands as they present. I am thinking as this post is a little old that you may have answers fron the endicrinologist now.

[Diane333]

Sorry and low vitamin D maybe due to Hyperparathyroidism which is diagnosed by high calcium high PTH and low vitamin D. The symtoms you describe fit with this also. Good Luck. Ps I think when you told the doctor about your family history it triggered Men 1 and that is why he wentto the computer to check it out. It is quite rare to have this. x