Ultrasound today

[JCMartin]

I had my scan today and burst into tears on the way out. She said she couldnt see any problems. Much as i dont want anything horrible i am desperate for a diagnosis. I spoke to a McMillan nurse later and she suggest Vena Cava Syndrome - but i have had a blue dye CT. But i am waiting a Blue Dye heart scan. I have booked a private Endocroniologist appt for Saturday to try and see is i do have Hypo despite no obvous goitres found.

[Bertwills]

I’m sorry to hear your story & that nobody replied. It’s awful when you feel there’s something wrong & hope for a diagnosis but are disappointed by a test.

What symptoms made you ask for a thyroid scan? Have you any blood test results to show us? You can collect any NHS blood test results from your GP’s reception. Make sure that they give you the ranges too, usually two sets of numbers after your result.

[JCMartin in reply to Bertwills]

My main concern is my shortness of breath and swollen neck, chin and jaw. I cannot excercise/walk without snatching for breath. My left cheek keeps going numb and my left eye lid is drooping. I had private bloods but the NHS dont seem to be interested in them.

Blood tests

[TiggerMe in reply to JCMartin]

These results show you are hypo so hopefully you will walk out of your Endo meeting with a prescription 🤗

[JCMartin in reply to TiggerMe]

Would that explain the swollen neck and shortness of breath?

[TiggerMe in reply to JCMartin]

Hypo effects everything, shortness of breath is often linked to low vit and min levels which makes for over sized red blood cells so reduces the capacity for oxygen... often low iron...

I have Hashi's / Ords as no goitre... more likely a shrivelled walnut but never been scanned

Swelling is a hypo thing... my tongue was so big it hardly fitted in my mouth... constantly biting it!

[posthinking01 in reply to TiggerMe]

Swelling of your tongue and other issues you mention here could and possibly are low B12 - I had the same - often with thyroid symptoms they are listed as such but actually are thyroid/vitamin and mineral deficiencies that go with that deficiency. My tongue was so swollen I could hardly close my mouth - still happens and I then know I am running low again,.

[TiggerMe in reply to posthinking01]

Absolutely, it was before I found the forum and I had low everything!

[Agitator23 in reply to TiggerMe]

Hi. So is it possible to be hypothyroid with a normal looking US?

I have the opposite situation. An abnormal looking US (mild thyroiditis, apparently) and blood tests of FT4 just within range (always normal TSH) but don't seem to make the grade for a hypothyroid diagnosis. (Loads of symptoms).

[TiggerMe in reply to Agitator23]

I've no experience of scans but if your TSH is in range but your frees are low then I think it suggests Central Hypo which involves the pituitary not sending the right signals as TSH is a pituitary signal... your thyroid might be capable of supplying the goods if it's send the right message?

[Agitator23 in reply to TiggerMe]

Trust me to have something rare and even more difficult to get a diagnosis for 😏 Can't get any GP appointment. It's become impossible to see mine face-to-face.

[TiggerMe in reply to Agitator23]

If you see a decent Endo as JC has just done and come away with a good outcome you’ll get on the right path

You can see why so many are forced to go private or self treat

[posthinking01 in reply to JCMartin]

Hi there sorry you are suffering like this I know how that feels -not all thyroid issues result in a goitre - I didn’t and it was subclinical hypothyroidism - Ords thyroiditis - look up on internet the drooping eye is also listed as a symptom.

[JCMartin in reply to posthinking01]

Thanks. Wierdly i have high B12 and not taking any vitamins.

[Litatamon in reply to JCMartin]

Note that and share with medical professionals that you do not supplement & have high b12. Why? It *could be* an indication of an underlying condition.

Are you sharing your blood saturation with every doctor you see? Hope so.

How did the lung investigation go? When do you get those results?

[JCMartin in reply to Litatamon]

My lungs were clear and working function was good. Just wtg ultrasound. As convinced i have lumps - but maybe they will go down with Meds.

[Litatamon in reply to JCMartin]

They said nothing about your low oxygen saturation? ❤️

[JCMartin in reply to Litatamon]

No because they only took it for a few minutes and it was ok.

[Bertwills in reply to JCMartin]

Ok, your results show that you have thyroid antibodies so you have an autoimmune disease. Your Thyroxine level is just too low. Your TSH is too high. You’re showing signs of hypothyroidism.

You mention that the NHS hasn’t done a blood test. A GP will only test TSH & in order to achieve the highest level ie what you need for diagnosis, you need to have the test as early as possible in the morning , 9am or earlier, & fasted. Nothing but water. Ask for a TSH test at your GPs.

It’s important as your results show you being just hypothyroid. What time of day was the private test done? Don’t allow a test to be done later or if you have eaten. Most doctors don’t understand the difference that timing has on TSH tests so don’t let them confuse you or insist. Hopefully the private endocrinologist will recognise that you have hypothyroidism. Many are not experienced with thyroid problems, they mostly treat diabetics. If you’re paying maybe you should consult a Thyroid UK recommended endo. There is a list that you can obtain from Thyroid Uk.

Don’t be anxious about the swelling. I had a very noticeable goitre (swollen neck) which disappeared when I started taking thyroxine tablets to replace the hormone that’s missing from your system. They also provide iodine. A deficiency in this can cause neck swelling. Do you eat or drink soya? If you do you should stop. It blocks thyroid hormones being absorbed. Also don’t use fluoride & filter your drinking water, fluoride has the same effect.

[JCMartin in reply to Bertwills]

Hi, thank you. No i dont have Soya. Its the shortness of breath on excersice which concerns me as i cannot leave the house or walk the dog. Scared to push it as i dont know whats wrong. Yes the Endo is from the list of specialists so fingers crossed.

[Bertwills in reply to JCMartin]

Somebody mentioned low ferritin causing breathlessness so iron supplements could help you. Hypo people develop vitamin & other deficiencies as their digestion doesn’t work as well. It’s a good idea to supplement Vitamin D, Bs especially folate, and C.

Also selenium, magnesium and iron if you need it. Don’t rely on multi vitamins. Buy individual supplements instead. Also if you are prescribed levothyroxine take it an hour away from food & four hours away from the mineral supplements & Vitamin D.

[Sparklingsunshine in reply to JCMartin]

I had exactly the same thing back in 2020, I was pretty fit and active and the shortness of breath whilst walking or exercising was odd.

I had a whole raft of blood tests done by GP and was fully expecting to be told I was anaemic again, it felt very similar, but it turned out I was hypo. I never had a swollen neck though.

[Hedgeree]

Hi JCMartin,

Really sorry that no goitre showed up on the scan. Many on the forum have experienced feeling unwell whilst waiting to get a diagnosis.

I know myself as I was continually dismissed by a GP; once I eventually got a thyroid ultrasound thankfully a lump and a goitre was found.

One of the symptoms that I experienced was a shortness of breath and difficulty getting my breath. This was also made worse by my ferritin levels being low. Your ferritin levels are also near to bottom of the range. I found I was getting breathless even when walking. Has your GP done an iron panel?

[JCMartin in reply to Hedgeree]

No - the GP hasnt done any bloods. The Endo says they cant rely on my private Thyroid blood tests but take a test done after food in A and E as there is no issue. Going to private Endo on Saturday - they may suggest Iron levels?

[bikebabe]

Symptoms sounds like what my aunt had - breathing issues, droopy eye, heart. I’m assuming they checked for myaesthenia Gravis? It was eventually diagnosed and she was successfully treated for rest of her long life.

[JCMartin]

Thanks for this, it Could be - but doesnt explain the swollen neck/chin/jaw?

[Doris11]

Hi there (nothing to do with my thyroid) I had a U/S scan years ago to check for a hernia! They said they can’t see anything! Later I had a gastric band and lo and behold I had a Hiatus Hernia! Fortunately the surgeon repaired it for me!

What I’m saying is just because they “ can’t see anything “ it doesn’t mean you don’t have a problem 😌… ❤️❤️

[posthinking01]

Here is my precious William Ord/Miller document - the endocrinologists of today have forgotten more than they knew then in the 1800's - I had all these symptoms - over 100 and they still said I was hypothyroid - suffered for 15 years nearly cost me my life as had myxedema - I still to this day look at someone with a gap in their teeth and a slightly dropped eye and can diagnose low thyroid hormone ! Cut and paste this link so it opens correctly. Enjoy having your eyes opened !

file:///C:/Users/amand/Documents/WILLIAM%20ORD%20GULL%20BRADSHAW%20LECTURE.pdf

[helvella Administrator Thyroid UK in reply to posthinking01]

That link goes to the drive on your own computer! No-one can access it from there!

Available from internet archive (Wayback Machine), here:

archive.org/details/b22416249

[posthinking01 in reply to helvella]

OK sorry but no need to be quite so abrupt !

[posthinking01 in reply to posthinking01]

This is the original document hope this works !

ia800403.us.archive.org/28/...

[serenfach]

Most blood testing in the NHS is now done by private companies. Refusing to look at your blood tests is just arrogant. I hope you get some answers soon.

[JCMartin]

Thank you.