'Borderline' over Active Thyroid

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Hi, new to forum....in 1994 I had a sub total Thyroidectomy, due to goitre that was huge, never needed Thyroxine as levels seems normal....so over the years I've had regular Thyroid blood tests.....I'm also B12 deficient, Vit D deficiency, very low serum Ferritin levels usually 5, so have Iron Infusions every three months,as it drops back to 5 or 3 again......I've got Regrowth on the little bit of Thyroid they left after my op In 1994, biopsies always clear.......had my usual blood test last week, saw GP yest and he to,d me I'm Borderline Over Active...shocked tbh, he checked my Thyroid and felt more nodules, so being referred urgently........havnt got TSH  levels to show you what I am, will get them printed off from Doctors.........always had thick hair, over last 8 months, hair is thinning,major difference in thickness, lose a lot of hair, thought that bit was normal,  so my question is.....do others here that have Thyroid probs also have B12 deficiency,Serum Ferritin levels low like mine,Hair loss ?  GP said I don't need Thyroxine..yet......as levels of TSH isn't so low...thing is, if anything, I've always been in the Under Active or Borderline Under Active levels, so how can I now be Borderline Over Active now ? Don't make sense to me..........I also have Infammatory Arthritis and suffer with severe Intestine problems that I'm currently being helped with, also have thickening of the bowel..... And recently cleared of Lymphoma as CT Scans shows enlarged Lymph nodes in stomach,.....anyway...any info would be great....also I must admit,I do get confused with Hyper and Hypothyroidism...what one have I got ? Also willI end up with true Over Active Thyroid, as it's Borderline now? ?....... Maybe they will remove the lot this time around, as I can see and feel the regrowth.....I have also had Acromegaly in past ,which I didn't know about, until my hands and feet grew, then it stopped...luckily for me, Consultant said it can appear and it can go on its own, they don't understand why!

Thanks in advance

Jill

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  • Posted

    Hello Jill:

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

    So you had part of your thyroid removed as well as a Goiter you say.  You also say they left you a bit of the gland.

    They may have removed a lobe of your thyroid gland and the other lobe is still making hormone. Sometimes the gland will make enough for you and sometimes it does not.

    When it makes too little, (HYPO), you will see these symptoms: Weight gain, feeling cold, feeling depressed, muscle aches, brain foggy, low temp, low heart rate, acne, dry skin, hair loss, brittle nails, brusing.  These are common ones.

    When you have too much (HYPER), you will see: Feeling HOT, rapid pulse, palpitataions of the heart, anxiety, nervousness, bug eyed, insomnia, lose of weight.

    Yes, many of us with Thyroid disease have low Ferritin levels, low Vit D, and Calcium, and B-12.  So you are not alone there!  We need to replace minerals and vitamins to keep our body in good shape.  Vit D helsp keep the bones in good shape and avoids Osetoporosis.

    From your symptoms you may be a bit Hypothyroid or low in thyroxine the hormone. Now you say they found nodules so maybe the nodules are causing some swings in you between HYPO (LOW) and HYPER (HIGH).  Once you have your TSH test let us know and that will help show exactly where you are.

    The thyroid is a complex gland and makes 4 hormones. We will discuss T4 and T3.   The thyroid makes T4 and then it is to convert in the gland into T3 Liothyronine. Some times it over does it and in some of us it hardly makes any hormone.  It is common to have swings in some conditions like Hashimoto's which is automimmune.

    Thyroid disease can be in your DNA or family line and it can be passed down and skip a generation also. Another thing is a virus called Epstein-Barr and it can damage the gland also. In some poor countries Iodine  is not around enough and people can get thyroid disease that way. There have been studies and they can also link abusive situations and other things such as gluten in our food to thyroid problems.

    You need your thyroid and I hope they can save it, because without it, the meds do not work as well.  You will have to wait and see what happens and update us.

    Any questions, just ask.

    Regards,

    Shelly

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    • Posted

      Hi Shelley

      Thank you so much for your informed reply, especially that your a nurse as I find this condition very complicated. My Mum was Over Active most of her life, My Dad had a Goitre and had most of his removed also, but like me, he didn't need any meds for it....also other family members have had it, aunts etc..,

      TheGoitre I had was growing behind my Chest wall, it was huge, but I only noticed the the Goitre when it was showing in my neck...little did I know it was just the tip of the iceburg.....the amount they left behind was size of say a large Grape and over the years I've had regrowth, which I thought would be impossible....I also had many biopsies on each nodule...all clear....luckily....so yes, I was rather shocked when GP said I'm Borderline...I don't like the Borderline word much....lol.....I will ring and get my results and I will reply back to you.....thing is, whilst In with my GP, he said I needed an urgent referral within two weeks,after he examined my neck,as he wants to rule out Cancer.....recently I had a scare of Lymphoma....I've got  Mesenteric..is that the right word.....or Pertineal Fibrosis in stomach.....however, the Ct Scans showed twice that I had Lymphoma, very scary times, had Surgical biopsy and clear, Thank God, so maybe that's why my GP is perhaps over reacting.

      i will find out on Monday when surgery is open again and il get back to you

      Thanks so much

      Jill UK

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    • Posted

      Hello Jill:

      Normally the thyroid does not grow back.  Perhaps it is nodules that swell, some can contain a cellular fluid and get bloated.  Some are dense tissue. Some can even be scar tissue.

      So you can see it runs in your family, and same with me. That is very common, and we can't change our DNA yet...LOL.

      Lymphoma is scary and very serious so I can understand why your Doc is rushing this.  Thank God it came back clear!

      Borderline is not a friendly word and means just inside of normal.  Some medical words are like sub clinical just mean not enough symptoms. It is just a word.

      I have seen huge Goiter's in text books back in the day, and I have a small one because my Hashimoto's was not diagnosed until I was 27 and I had symptoms back when I was 12.  I am now 54, and it is about the same as it was back when I was 27.

      It is amazing that the goiter did not cut off your airway. It must have been a long surgery to remove it and a tricky one.

      So do not worry about the words doctor's use, let's get your TSH and see what happens and go from there.

      Keep positive and keep me posted.

      XO, Shelly

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    • Posted

      Hi Shelley

      Thanks again for your speedy reply

      yes it's the nodules that regrow, although I said thyroid....consultants over here always say its regrow the of the Thyroid....but yes it's the nodules, I've had many Biopsied over the years,but then I havnt bothered, just had a regular blood test done, and when he palpated my neck, boy, did that hurt.....the Thyroid that was removed was pressing on my windpipe over time, so they got me in quite fast....the recovery was long and the op was for me, very painful.....can't bear to go through that again ....... We will see....il post to you on here on Monday and let you know the TSH......I hope your coping well with yours, and it's good tonxhatbwith someone so knowledgeable....so Thank you so much 😻😺

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    • Posted

      Oops typos lol....I meant it's good to chat with someone that is knowledgeable x
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    • Posted

      Oops just noticed I've been spelling your name incorrectly...apologies Shelly 🙀😺
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    • Posted

      Hi Shelly

      my TSH is 0.03

      T4 is 16

      I don't understand levels,they just don't compute to me lol....Receptionist read these levels out to me...that is all she had

      Thanks Shelly

      Jill x

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    • Posted

      Hello Jill:

      TSH (Thyroid Stimulating Hormone) is normally between 0.45 to 4.50.  Your TSH is at 0.03 which indicates HYPER or too much.  When it is on the low end it means you have too much. The scale is opposite of each other.

      T4 is normally between 4.5 -11.2 so  a T4 of 16 means too much thyroxine in your blood.  So it looks from the lab work you are making too much thyroxine, which goes along with your Hyper   or "OVER ACTIVE" diagnosis.

      Sometimes, nodules or growths on the lobe of the gland can act like thyroid tissue which actually can secrete the thyroxine hormone.  Nodules or cysts can make it go haywire!

      It can happen in the ovaries or adrenal gland also where these kinds of growths turn into "Functioning Tissue" (medical description), and mimic making the hormone. So it does not surprised me as much. It can happen.

      Also perhaps they did not get all of that tissue that was causing the goiter to grow, it can grow back if they left some of it. Tissue in the body can do some strange things.

      So in your body you have this tendency to grow nodules and that is causing the blood work to be off.

      What is the doctor planning on doing?

      XO, Shelly

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    • Posted

      Hi Shelly

      Thank you for explaining the levels too me, all makes sense now lol......he's referring me to hosp......should hear soon as he's out in as urgent......so am I Borderline....or definitely Over Active.....and can it drop back to normal on its own ?? I'm wondering if my GP was just being kind by telling me it's just Borderline? He knows IV been through so much health wise lately ...what do you think ?

      Thanks again 

      Jill x

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    • Posted

      Hi just to add this....GP says I'm Over active, yet I'm shattered.....people with Over Active,nar tether usually running around at a pace so fast that is the reason they lose weight ? I don't sleep well at all, shattered all day long, dont want to do anything, yes I get Palpitations, always have done....but this lethargy is getting me down......that's why I'm surprised he said what he did......my hair use to be thick....now it's thin....I've lost a lot if hair, my nails are brittle too...ugh......anyway, wonder what you thought of tthis too ?

      Thanks

      Jill x

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    • Posted

      Hello Jill:

      Hyper or over active thyroid has to do with the gland producing too much hormone.  Since our bodies do not like too much or too little it causes weird symptoms to show up.

      Having too much (HYPER) you are nervous, jittery, and you lose weight fast, have insomnia, you can feel hot, sweat a lot, your eyes can become big and bulge, your heart can race/palpitations, your hair can thin.

      Most of the time people feel wired up or jittery/nervous feeling.  Having the gland produce too much is not good for your heart. 

      Hypo is no fun either, because you feel sleepy, feel no energy, get brain fog, gain weight, bruise easily, brittle nails, feel cold.

      Option #1-Now they have some meds called Tapazole (Methimazole/Carbimazole) that can SLOW the gland down. A lot of people do this first and in some people it helps and the gland settles down. Sometimes you may have to be on it for a while.

      2nd  option: They also can do surgery to remove the thyroid lobe or extra tissue causing this.

      3rd option is RAI (Radioactive Iodine) this will kill of the gland and you will not have a thyroid anymore.  The bad side is you will become HYPO, and need replacement meds for life.

      I would try option 1 if I were you. It may help it to settle.  Since your blood TSH was in the Hyper side your doctor should approve that.

      Also in some people it can swing back and forth which is annoying!  So one time your Hyper and the next you have Hypo.  I see this a bit here, so meds to slow done your thyroid may help nicely here.  The pills were designed for this condition.

      So I think you are swinging between both Hyper and Hypo and there is hope it may settle down.  You could ask the doctor to try out option 1 above and see if it helps.

      Any questions just ask,

      Shelly

       

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    • Posted

      Hi Shelly

      Again thank you soooo much for your very informed post to me....I am sooo glad I've found you.....I should hear soon about my appointment with consultant.....just so you know, I'm nor seeing an Ecdo consultant....but a consultant I saw before re my Thyroid nodule growth but he's in ENT.......oh well, he does know his stuff.....so will wait and see what he says....I will get back in touch neither you when I know more

      Stay well Shelly, and il be back in touch xxx

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