New here...expanding/contracting thyroid w/normal blood tests

Hi folks. I'm new to this community and am glad to have found others who can relate to my struggle for diagnosis and explanations that make sense.

I'm currently 39, and a couple decades ago a doctor found nodules in my thyroid and a specialist said to get an ultrasound every 2-3 years to make sure they weren't growing into something nasty. I have done so and have never had an unusual ultrasound or blood tests and the nodules seem content to stay put. The women in my family are no strangers to thyroid troubles so I assumed at some point my time would come.

In 2013, my ultrasound showed my thyroid as right lobe 5.2 x 1.3 x 1.2cm and left as 3.9 x 1.4 x 1.2cm. In 2016, my ultrasound showed my thyroid as right lobe 57x16x12mm and left as 53x15x11mm. The doctor freaked out that my thyroid had grown so much and asked if I felt it pushing on my wind pipe. At the time I did not. She said to come back for another scan in 6 months. At the time, my blood levels were tested at Anti TPO <0.50, T3 117.5, Free T4 0.97, and TSH 1.499, which the doctor said were fine.

Six months later, I most definitely felt something pressing on my throat/windpipe and went back for the next scan. It showed the right lobe as 1.3 x 1.3 x 5.4cm and the left as 1.3 x 1.1 x 4.4cm. My blood levels were T3 119.4, Free T4 0.97, and TSH 1.157. My doctor said it was all back to normal size and my blood was fine. When asked why it expanded and contracted, she said sometimes the thyroid expands temporarily when fighting infection. When asked why I now felt the pressure on my throat when I didn't before, she said I gained a couple kilos in the past 6 months and since the neck is a finite space, the extra fat was crowding things. When asked about my other symptoms (fatigue, not sleeping well, weight difficult to control despite good diet and activity, generally feeling not right) she said probably I have sleep apnea and sent me to the sleep doctor. He said I am not a obvious case for sleep apnea - partly due to the fact that I couldn't confirm if I snore when sleeping as usually there is no one else sleeping in my room. He declared my windpipe wasn't blocked but grudgingly said he'd do a test if I wanted to make sure. He echoed that I was just fat and that the fat was crowding my thyroid in my throat. He recommended I lose the couple kilos I gained and see what happened. He also seemed to think that my feeling pressure on my throat was psychosomatic.

Since then I have been trying to monitor the symptoms and ensure I am keeping active and such so that the next time the doctors point to that as a cause I can say no to that explanation and force them to pursue something else. I've noticed that I sometimes feel my pressure on my throat and sometimes not - it seems to come and go. I've been trying to pinpoint what might influence that but do not yet have any decisive insights.

Does anyone have any thoughts? I have no problem standing up to doctors and find it helps if I have some good information on my side. Thanks in advance!

Skip

Featured Content

Join our community

The community helps everyone affected by thyroid conditions by providing support, information and guidance.

Follow

Featured by HealthUnlocked

11 Replies

oldestnewest
  • without the ref ranges for your thyroid results its hard to know and without a full thyroid antibody screen its even more difficult

    however given your symptoms and family history its perfectly possible you are hypothyroid but it may be CENTRAL hypothyroid and not the more usual Primary hypothyroid and since doctors never think abut the very different Central hypothyroid it seldom gets diagnosed

  • Thanks, I will look into that. I didn't know there were different kinds of hypothyroid. What ref ranges do you need? I have the full reports so theoretically I can find them if I know what I'm looking for.

  • The ranges usually follow in brackets after the result. They are important as they differ from lab to lab so we would be guessing as we are only familiar with our own

  • as in above reply ref ranges are in brackets after the result

    theres

    Primary Hypothyroid = thyroid failure

    Central hypothyroid =pituarity failure

    Tertiary hypothyroid =hypothalmus failure

    the TSH

    free t3

    Freet4

    results for the above will be different depending on which portion of the thyroid pituarity hypothalmus axis has failed

    but all most doctors and even endos think about is Primary and they kniw far too little about that

  • Not wishing to argue, but I've always read that

    Secondary Hypothyroid = pituitary failure

    Tertiary Hypothyroid = hypothalamus failure

    and that Central Hypothyroid was a term that covered both Secondary and Tertiary, when you didn't know which it was, as opposed to Primary Hypo.

  • greygoose you may well be correct

    the point is that TSH alone is far too widely relied upon and simply cannot and will not ever diagnose Central or 2ndary or tertiary hypothyroid

    its not even reliable for diagnosing Primary because symptoms preceed blood tests by years

  • Thanks, everyone. The reference ranges are: Anti TPO 0.00-5.61; T3 58.0-159.0; Free T4 0.70-1.48; and TSH 0.350-4.940..

  • Also, does anyone have thoughts or experiences about why my thyroid is expanding and contracting? Thanks.

  • I'm a very confused person regarding thyroids but I too have nodules on my goitre which can enlarge and shrink in a day. Only light I can shed on it is that going gluten free and caffeine free has helped somewhat.

    I was diagnosed last week with fibromyalgia and I can see that the flares of fibro coincide with the enlarging of the thyroid !

    Today, I've really paced myself, done little and rested a lot and my swollen thyroid is barely noticeable.

    Day before yesterday I did too much so felt awful yesterday, the fibro headache, neck painful, barely able to move = larger thyroid.

    It seems weird, I've no idea how I can reduce it permanently but I think this shows my general state of health affects my thyroid.

    The fibromyalgia was diagnosed by a Rheumatologist on examination and history. I've only had one raised ANA test, everything else ( I gave up counting at 45 different test results) was in range.

    It just might be worth you looking at an outside reason for your symptoms. Just from reading these brilliant forums I've realised that an awful lot of people have more than one condition, often with overlapping symptoms.

  • Sometimes the thyroid swells if it's low on thyroxine. When it arrives it is so scared that there may not be anymore that it hangs in to it hence the swelling.

  • Thanks again for all your input. I'm making an appointment with new doctors. What should I ask them to look for or what test to run if I want them to consider the possibility of Central Hypothyroid as opposed to just Primary? Is there a more detailed blood test that should be done? Thanks!

You may also like...