Just worrying and wondering

[chankins80]

Thanks for adding me.I'm new to thyroid problems. I have extreme fatigue ,weight gain etc I had an appointment with a endocrinologist .He said my thyroid was enlarged and worst case scenario lung cancer .a sonogram is the 23rd A long time to worry .Anyone with this problem? A y advice? Thank you

[Lalatoot]

Just take things a step at a time. You will get good support here.

[greygoose]

Hi chankins80, welcome to the forum.

How would an endocrinologist know if you had lung cancer? That's not their area of expertise.

[chankins80 in reply to greygoose]

I don't know for sure ,everything was so overwhelming that day .My ACTH level is high with no apparent source. He also does diabetic and hormone care . The 23rd we will go over the blood work I had done the 3rd and do the ultrasound .I just want to be fixed .I have trouble swallowing and too tried to leave the house

[greygoose in reply to chankins80]

Thyroid problems can cause trouble swallowing, I think most of us have had that at some point. The thyroid can be swollen a little, and press on the oesophagus.

ACTH is a pituitary hormone. It stimulates your adrenals. It has nothing to do with the lungs. Endos are supposed to know about all hormones - although rarely do - but their expertise doesn't cover the lungs.

Did you get a print-out of your results? You should always ask for one so that you know exactly what was tested, and what the results were. You need to take an active part in your health care. I know you don't know much about it all at the moment, but stick with us and you'll quickly learn. In the meantime, don't worry.

[Hidden in reply to greygoose]

What about ectopic ACTH, ie ectopic Cushing’s syndrome... from non pituitary sources?

[greygoose in reply to Hidden]

I'm afraid I don't know anything about that.

[Hidden in reply to greygoose]

This endo does.. so presume just being thorough?

[Hidden in reply to greygoose]

That's what I was wondering!

[SlowDragon Administrator]

Presumably your GP did some blood tests BEFORE you saw endocrinologist?

Or you had bloods done at hospital ?

First thing is, do you have any actual blood test results?

if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and antibodies if not been done

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

[minkjaere]

Hi,

I am sorry to hear that. Enlarged thyroid, fatigue and weight gain are common symptoms of hypothyroidism. If you can, don't dwell so much with the lung cancer thing. Actually i don't understand how can the doctor said that prior to any lab tests.

[Localhero]

Hi there.

So sorry for what you’re going through. Life can be so hard at times and the medical profession can sometimes not help.

Still, I’m glad you’ve found this forum. So far I’ve found it really useful and I’m sure you will too.

Keep us posted with how you’re going.

[HashiFedUp]

I think it’s appalling that an endocrinologist would say you ‘might’ have lung cancer. It’s totally insensitive and outside their area of expertise anyway. Take each as it comes and try not to worry about anything until it happens. My dads GP told him he could have bowel cancer and he worried a lot - when we went for an ultrasound, the radiologist said no no it’s just a hernia and your GP shouldn’t have even mentioned cancer! Try not too worry. Scary though I’m sure and we’re all rooting for you here. Keep us updated x

[beesting1966]

Hi Chankins80

So sorry to hear what your endocrinologist had to say which has left you full of worry, as everyone here has said 'that is not his field of expertise' wait for the scan and further bloods. I know you might think what do we know but at some point or the other we have all had something said to is by endocrinologist's that has worried us.

The support and advice on this group is amazing, get your blood resultd and put them on here and you will get better understanding of the results.

I will all the best. Take care

[LotteeD]

I know this is difficult but try to put it out of your consciousness until you actually have proof. Only then will you know what you are dealing with and can get a treatment plan. Look after yourself extra specially and use distraction techniques to reduce anxieties. There is an App called Head Space that can be downloaded with relaxation techniques on it. Am sending kind wishes of healing and wellness your way. X

[vocalEK]

I did not see sonogram listed on the ways to detect lung cancer.

lcfamerica.org/lung-cancer-...

mayoclinic.org/diseases-con...

Frankly, I believe the best way would be a low-dose CT scan, which is recommended now for anyone in the US who has 30 pack years of smoking (i.e., number of packs per day times number of years smoked) and still smokes or stopped smoking less than 15 years ago.

Mine was detected via a CT scan 5 years after I quit. Good news is that it was caught at stage 1 where the cure is usually surgery. I'm fine. I think that you will be too.

[humanbean]

For more info on ACTH this link might be helpful :

labtestsonline.org.uk/tests...

Click on all the + signs for more info, apart from the one near the top of the page after "Choose Topic" which takes you to the search page.

The section "More Common Questions" has this question :

"My doctor told me that my extra ACTH is not produced in my pituitary gland. What is going on?"

And the answer :

"Another way your body can make ACTH is called 'ectopic production'. This means that ACTH is made from tumours elsewhere in the body, usually (but not always) in the lungs. This causes Cushing's syndrome and may alert your doctor to the presence of a tumour."

I think that your endo has jumped to a rather rare reason for ACTH being high, rather than checking out the most common reasons first. Note that I have no medical training whatsoever, so take any pronouncements from me on ACTH with a large pinch of salt.

[Rosebud1955]

Hi,

Sorry to hear that you’re having these issues. Stay strong, be positive. Remember, worrying does not change any outcome. I have had elevated ACTH & elevated Aldosterone on three separate blood work, they just keeps on repeating the labs, I think they don’t know much about anything. I finally requested they do further investigations. I’m booked for an MRI next week. One Endo insists its a pituitary problem. He might be correct, but I also think it could be an adrenal problem. I have been having frequent urination for almost a year, pain in the area of my adrenals as well. My tsh is suppressed even though I have lower FT3 & FT4. It surely looks like my pituitary is not making tsh. Once I get results and diagnosis, I will post the findings. I know I told you not to stress too much but I stressed for an entire week. I now realize that working just makes me weaker and less able to cope. Be strong, you have all the support you need from members of this forum. Don’t know where I would be without the support of these fine people. I’m sending you lots of positive vibes.

[Lora7again]

How unprofessional of him to suggest you have lung cancer. Have you had a lung x-ray? Are you suffering from breathlessness? Have you lost weight without dieting? Those are symptoms of lung cancer ... I know this because my mother had them. She had breast cancer and had her breast removed and 5 years later the cancer returned in her lungs and finally her bones and brain. Some of these Doctors have no idea how their unnecessary comments can worry their patients and they should do the appropriate tests before they guess what is actually wrong!

[klr31]

Have you had your thyroid blood tests and got the results? Are you on thyroxine yet?

Karen

[chankins80 in reply to klr31]

I called the Drs office yesterday,and all the blood work results are in .I then tried to move up my appointment up to this week .the office manager said I could get in to discuss the results but the sonogram would still have to be next week .I decided to wait until next Wednesday as it's a 50 minute drive each way .Does anyone know if the the endocrinologist will be able to know to know everything after the sonogram ? typically? If a biopsy needs to be done will if be done then typically? I sure do appreciate each and everyone taking the time to answer me and words of wisdom .You all are my new family

[klr31]

I would ask for your results over the phone if you have problems getting in.

Karen