9 years and waiting!

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Hi everyone,

Brilliant to find so many people to talk to.

when I was 16/17 the doctor was standing at the other end of her office and noticed enlargement at the base of my neck where my thyroid gland is located so decided to send me for a blood test - TSH levels I believe. Tests came back as normal but she wanted to carry out testing every 6 months. Every time my results came in they were normal but I still had an enlargement at the base of my neck.

Over the 9 years I have suffered horrendously with various symptoms to the point of exhaustion.

Serious fatigue, dry skin, bad hair loss, memory fog, aches and pains all over, bought of rapid heart rate, pains in my neck, hoarse voice, persistent cough, stomach issues and many more.

I finally told my doctor that I have had enough and wanted to know my last TSH level results to which he said was slightly elevated and he decided to send me for an ultrasound. Roll forward to last Wednesday when I was sat having my ultrasound in the local hospital. I was surprised to hear that despite having an enlargement at the base of my neck my thyroid gland is of perfect size......but he found rather a large number of nodules/growths. Basically that's all that was said and I am now waiting for the results to come back to the GP by the time I have my appointment next week,

I am very concerned as i have limited information and would really appreciate to hear any of your experiences to provide some peace of mind.

Many thanks.

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15 Replies

  • Posted

    A friend of mine has had a lump on her neck for nearly 30 years and she is absolutely fine with the test results normal as you. She did become a vegan and started eating and living very healthily. I have just had surgery of parathyroid and am having horrible reactions to it, so would not recommend surgery unless your health is at risk.
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    • Posted

      Thanks for sharing you experience - much appreciated. From what I could gather from the doctor who did the scan he had placed the nodules into the benign and indeterminate categories which I am not familiar with but I'm sure my GP will explain further next week. I've heard mixed opinions about the surgery and being a teacher it would have to be something that I would really need to think about before going ahead with anything but we will cross that bridge when we get to it I suppose.
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  • Posted

    Hello Sarah:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    When I was 12 I had weird symptoms for a pre-teen, I was constipated and COLD and tired.  Before age 27 I was skinny and normal enough I thought.  I looked Hyper thyroid more.  When I was 27 I developed a Goiter (large swelling area at base of neck).

    I was then like you sent off for blood and it came back I had Thyroid disease.  Hashimoto's to be exact.

    Then many of years later in 2013 I had a thyroid Ultrasound which showed 3 nodules.  Nodules is a common thing and some of them can cause the thyroid to go haywire.  Some people get cysts which have fluid in them.

    I have 3 nodules and they are all under 1 inch.  Now let me assure you that thyroid cancer is kind of rare.  Most nodules are bengin and not cancerous at all.  They can sometimes grow and press on your throat and that is a problem. Some people get them from infections and some people grow cysts and nodules as a family trait.

    Most of these can be left alone, and watched by an ultrasound.  If the nodules are making your swallowing a problem or causing your breating to be bothered, then they can remove your thyroid.

    They can see the location on the Ultrasound and if it is on one lobe then they can take out 1 lobe of the gland.   You have 2 lobes of the thyroid gland.

    In my case since they found 3 only, I decided to watch them and do an ultrasound again because you do need a thyroid  gland.  It depends on how many you have and where they are and how you feel.

    So try and keep the thyroid gland as not having one is very hard to get the meds to work. 

    Any questions feel free to ask,

    Shelly

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    • Posted

      Thank you smile I have been diagnosed with hashimotos and started levothyroxine for hypothyroidism. Scan has been validated and waiting to go for biopsies on the nodules. Hopefully I will start to feel better with the medication and having bloods in 6 weeks to check on the progress
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    • Posted

      Hello Sarah:

      Thanks for the update.  Make sure to take Levothyroxine without any food in the stomach.  You must wait about 1 before eating. Food can block the medication from absorbing to receptor sites in the body.

      Also worth saying is take a good multivitamin w/ iron.  Ferritin is a component of Iron and is needed to make Levo work well.  Most of us with Hashimoto's can be low in Iron & Ferritin. 

      Give Levothyroxine about 6 to 12 weeks to build a level.  Most people will feel better after 4 weeks, and the body takes time to build a proper level. They will draw blood again in a few months time and if needed they can adjust the dose of Levo.

      Please update me on the biopsies. Any questions just ask,

      Shelly

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    • Posted

      Hi Shelly,

      Got my first appointment with the Endo next Tuesday and then my biospy scheduled for a week Tuesday. Really nervous about what their going to say as when I phoned up to try and rearrange the biopsy due to a clash in commitments the secretary told me that the scan was down as urgently needed. Had the ultrasound results back in full and they've said the larger nodule on the right side is either a U4 type or a parathyroid but the parathyroid has now been ruled out as my parathyroid levels and calcium etc are all perfect. So fingers crossed for the results.

      Sarah x

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    • Posted

      Hello Sarah:

      U4 can be what they call "Suspicious" only because of it's shape or size or tissue may not be uniform in the Ultrasound. To be sure they need to do the biopsy.  It can still be non cancerous and be labeled U4.

      I will be praying for you to have a good outcome. Please do update me as you find out the results.

      Shelly

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    • Posted

      Hi Shelly,

      Had my biopsy yesterday which was traumatic sad the doctor said he wasn't sure if he could do it as the growth is at the back of my thyroid gland and then proceeded to say that he thinks it's my parathyroid (despite all parathyroid levels being normal) and that nothing would need to be done about it.

      Had anaesthetic but it hardly reached the spot so still in quite a lot of pain and having difficulty talking and swallowing food but I suppose it's the price to pay to get a diagnosis.

      I was just wondering though as the doctor performing the biopsy was so adamant that it was my parathyroid gland and that nothing needed to be done - what are the chances that it could be even with my levels for parathyroid and calcium being perfectly normal. My endo ruled out parathyroid as my results came back fine.

      Sarah x

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    • Posted

      Hello Sarah:

      PTH is a hormone made by the Parathyroid gland and if that is okay, I would doubt it could be that.  Normally levels in that hormone would go off and then they would investigate it.  They can do an MRI & it could see better if anything is abnormal there.

      I am sorry to hear about the biopsy  Please rest your voice and throat and iyou have any trouble breathing go to an ER or A &E facility.  Sometimesit can swell inside from the biopsy and sometimes they take a Benadryl or Antihistimine if needed.  Follow all instructions they may have given you.

      Let me know how it goes,

      Shelly

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    • Posted

      Thanks Shelly, so nice to have someone to talk to. I've been a bit worried about my weight for the last few days. Been on levothyroxine 50mg for almost 4 weeks now and I've lost 1 stone and 7lbs of that stone has been since Sunday and my appetite hasn't changed at all. Was just wondering if that ok as I've seen so many posts about people putting on weight when starting levothyroxine. But then again I'm sure the stress of the biopsy and the results has made me lose some weight too. Had my latest bloods back and my TSH, T3 and T4 have all come back within normal range so guessing the levothyroxine is working x
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    • Posted

      Also had the print out of my bloods today and concerned about some of the drastic level changes in just 4 weeks.

      TSH

      18.03.16 - 7.00 (0.27-4.20)

      19.04.16 - 2.78 (0.27-4.20)

      T4

      18.03.16 - 12.9 (11.00-25.00)

      19.06.16 - 18.9 (11.00-25.00)

      T3

      19.04.16 - 4.8 (3.1-6.8)

      Thyroid Antibodies

      18.03.16 - 105.3 (<34.00)

      *want to get it tested again*

      Triglycerides

      18.03.16 - 2.0 (<2.0)

      *want to get it tested again*

      Serum HDL

      18.03.16 - 0.8 (>1.20)

      *want to get it tested again*

      Testosterone

      18.03.16 - 1.4 (0.30-1.70)

      19.04.16 - 2.3 (0.30-1.70)

      I think the testosterone is down to the fact that since the first blood test I haven't been taking my pill so will be interesting when I start the pill back if my testosterone level goes back to normal.

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    • Posted

      Hello Sarah:

      Sorry for the delay in answering.

      TSH is now  2.78 so that is good.  It is just where it should be. T4 is okay at 12.9.

      TPOA antibodies 105 not great and should go lower as thyroid meds are working. Ask for 3 month retest.

      Next 2 tests are Cholesterol  & Triglcerides which can bother the heart. They can  be high in us thyroid patients so get retested again. Also if you have may heart disease in your family make sure you get it checked.

      HDL by the way is the good part of the cholesterol the LDL is the bad one.  Get both rechecked to be sure.

      Testosterone should be low as you menopause and looks to be okay here on your ref. sheet at 1.4. is in the middle of 0.30 to 1.70

      I hope this helps, any questions just ask,

      Shelly

       

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    • Posted

      Thanks Shelly smile just wondering should my T4 have increased from 12.9 to 18.9? Having another blood test in three weeks time which is checking cholesterol and glucose as well as all of the above so that should give me more details as to everything that's going on smile
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    • Posted

      Hello Sarah:

      Levo is T4 and is a synthetic version of it and you can build T4 as you take it.  The idea is to keep it in normal range 11-25 in your ref. range and it can differ a bit because of testing methoods.

      So it is normal to build a level and see it rise since  it may have been lower when you started.

      Now if it goes higher than the lab values then you may have excess in your blood.  Also do not take your pill before a lab test wait until after it is done.

      I hope this helps, let us know how the other tests go.

      Shelly

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    • Posted

      Hi Shelly,

      Just thought I would let you know, was called in to see the consultant today as my histology results were back and they were inconclusive. We discussed referral to the surgeon as he said due to the location of the nodule they cannot be sure that the samples they get are coming from the nodule as it is so deep in the thyroid which I completely understand so hopefully in the next 6 weeks I will be having the thyroid removed. Lots of factors have helped the decision like a massive family history of thyroid cancer on both sides of the family, the symptoms and the swelling at the base of my neck which is now really having an impact on my voice and swallowing. Thank you so much for all your advice smile it has been so amazing and you have always put my mind at ease.

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