PMRGCAuk
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Anyone got a goitre?

I have had a goitre for 30 - 40 years. Bloods have always been normal and no cause identified. A recent CT scan showed that the 'multi-nodular goitre has reduced my trachea to 1cm.' Despite it being with me for decades I have just discovered a goitre isn't a growth ON the thyroid. I was referred to ENT who talked to me about removing it. At the moment the op would be beneficial to assist my breathing but not a necessity for the time being. They told me it would mean a significant op (approx. 4hrs) and a 4+ days stay in hospital and tablets for life. Because my bloods are normal for thyroid I don't have thyroid tablets currently.

I am still reducing steroids for GCA and PMR and am hopeful as I reduce I will be better placed to lose weight which would also help my breathing.

If you have read this far......thanks.

My questions are what does anyone think about this being another autoimmune disease -Hashimotos? If you are immunosuppressed on steroids does this affect your thyroid function?

Thanks

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Hello, I know little about your conditions but want to send you warm wishes and hope there will be a resolution for you soon. Incidentally, I have an underactive thyroid which arrived a year after being diagnosed with RA.

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Thanks venezia1. I am feeling calmer. At least I can celebrate that the blood shows that my Thyroid function is perfect. Something had to be perfect..!

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I have Graves Disease. Diagnosed in 1984 following a pregnancy ( quite common). It is not unlike Hashimoto’s disease. I had an extremely over active thyroid gland, thyrotoxicosis, a goitre, prominent eyes, rapid heart beat, and extreme weight loss. I was treated initially with Carbimazole and then Radio - Iodine treatment that knocked out my thyroid function. I am on Thyroxine for life. I am hardly aware of the condition now but my bloods have shown a few minor changes, since my PMR diagnosis in March 2016.

I noticed breathlessness and a narrowed oesophagus as part of my Pred side effects on the higher doses 20 mgs highest). Not bad now.

Your bloods have always been normal and you haven’t had Thyroid symptoms. Do your doctors think it is Hashimotos? A friend/ colleague had it and was really quite obviously ill.

If I had this dilemma, I think I would want to leave well alone. You say that it has been there for 30+ years and hasn’t given you trouble. I would want to avoid a major operation if I could. It doesn’t seem to be active in any way. It depends on how bad the breathlessness is and whether you can be promised a significant benefit from the surgery.

Why don’t you set yourself a weight loss goal and see how much better you feel. Low carb and sugar seems to be the best with our disease. Says she who had two chocolate bunnies this evening ( smallish).

I can’t answer the specifics of your question except from personal experience. PMR hasn’t really effected my thyroid function and I would expect abnormal bloods with Hashimotos.

Hope that is of some use.

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Thanks SheffieldJane. That was just the sort of answer I was hoping for. I was in a bit of a tizz when I saw ENT. Feeling much calmer now and inclined to 'leave well alone'. X

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Hmm, a dilemma you don’t need. If it was me, I’d want to try the weight loss first because it would be beneficial in so many ways and could avoid a major op with all the risks involved. I would want to know from the surgeons what the reason is for doing it now. If you did need the op later and you were a healthy weight, it would reduce your anaesthetic risk too particularly as it is a long anaesthetic. It is very possible to lose weight on high doses of Pred by avoiding carbs altogether, which also stops the cravings for sugary things and stops blood sugar levels from being all over the place. It isn’t the Pred that causes weight gain but the affect on appetite and blood sugars. Cutting out salt will reduce fluid retention. With the doctor’s blessing, I wouldn’t wait for the revolution before starting. Good luck!

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Thanks SnazzyD. It has been time for the diet for a while.... but it's been winter, I have felt a bit sad, the chocolate was very tempting and I have misplaced my will power. Ah well.

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Ah yes, we all fall at the alter of chocolate sometimes. On the very low carb diet I still eat choccy daily but only 70% and above cocoa kind. Regular chocolate now tastes horrible.

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Most autoimmune disorders are due to over or bad activity of the immune system - so being immunosuppressed with steroids (which is really only a factor at high doses I think) is really not relevant.

A goitre is associated with a thyroid that isn't functioning properly - if it is underfunctioning then it grows to get more manufacturing capacity and that eventually results in normal blood tests.

This is a good and simple article

medicalnewstoday.com/articl...

Did ENT think that general weight loss would help your breathing? Often it is more a case of where the goitre is growing that causes the problem. But if they are happy to wait and see you have some time to try the weight loss approach anyway.

You don't say what dose of pred you are on - it is certainly possible to reduce weight gain on higher doses and lose weight from about 20mg down if you are strict enough with cutting carbs.

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I’d be asking what the width of the unaffected trachea was i.e. the trachea away from the goitre.

“The normal transverse internal diameter of the trachea ranges between 15 and 25 mm in men and 10 to 21 mm in women” from here uptodate.com/contents/radio...

Do you have any swallowing difficulties? Coughing?

Not sure weight loss would solve this, as I suspect it is the goitre alone that is causing the constriction. However getting to your ideal weight may help a little by reducing tissues around your throat, also reducing your body mass will mean less body for the thyroid gland to deal with. Plus the benefits of lessening anaesthetic risks.

I think I might look at diet, specifically iodine intake. Not sure it would have much effect after 30 years, but it might? One to discuss with your Doc maybe.

Oh and my understanding is that higher levels of cortisone can lower thyroid production. “Glucocorticoids inhibit TSH secretion from the pituitary, alter transfer of thyroid hormones from plasma into peripheral tissue and inhibit the conversion of T4 to T3”

And something to bear in mind when planning your weight reduction diet: “Severe calorie restriction appears to limit the conversion of T3 from T4, which is undesirable for hypothyroidism. Studies suggest a very low carb ketogenic diet may have a similar effect because of the way it mimics starvation or fasting (metabolically). However, moderate low carb diets are likely safe.” So keep a low level of complex carbs, but ditch the cream cakes ;) although you say your thyroid panel is normal....they have done a FULL panel have they?

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Yes my trachea is 1cm, I have a mild cough, occasional hiccups and rarely difficulty swallowing. I am aware that I tilt my head back to sleep.

I am not expecting a weight loss to cure the problem but I do expect not having to haul around all this weight would make my breathing better.

I always reckon my body knows what it needs in terms of particular nutrients. So at times I crave fish, fruit and... chocolate but never cream cakes. But I didn't know about the t3, t4 and TSH.

Never had a full blood panel.

Thanks for information.

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granny-b

Good morning. I think I can add some of my experience to your question. In 2009 I experienced a Troublesome order which is a growth on the thyroid gland. It was physically large enough to see and cause issues with swallowing and felt the choking sensation and was often hoarse and unable to speak. They did a needle aspiration three times checking for cancer as it was inconclusive I had a thyroidectomy to remove half of the thyroid. It only required 24 hours in the hospital came home on all soft foods and had to restrain from speaking maybe awake I don't remember exactly how long. Speed forward 2012 and I experienced the same thing but much more times so the other half was removed placing me on 100% supplementation of thyroid medication. Where is the difference between brand synthroid for example and generic levothyoxorine (sp.) Whichever route your doctor gives you it's important to stay on. My experience since the fall on 15 mg prednisone is wreaking havoc on my thyroid levels. Currently 3 times they're happy level putting me into a very hypothyroid place which is not normal for me. My endocrinologist has made an adjustment though I don't have trusting again for about 6 weeks.

If you are not having truly troublesome symptoms I would forgo surgery as long as possible while on the prednisone. Good luck to you.

Janet

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Thanks Janet. I am coming to the view of leave well alone unless it becomes a necessity rather than beneficial.

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Thanks to everyone for your responses.

I am leaving as is for the time being. I am now much better informed.

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