I would like to hear from anyone who has an atrophy thyroid gland & there experience (when, symptoms, how recognised/diagnosed, illness or congenital born atrophy with reduced gland).
I have literally a one sided (half) gland. Told born with (really?... how could they know that!). It was discovered by US after I complained of thyroid area discomfort.
I suffer all the hypothyrdroid symptoms in a big way, on/off low cortisol, micro pituitary adenoma in last year, etc.
Endo says my atrophy thyroid is fine & coping (hormones generally normal) & quite ignorant towards me.
My life has changed massively in last three years, particularly poor mobility and pain. Diagnosed with CFS/ME but even specialist for that says I display the symptoms but also others over & above.
Just wondering if anyone else with atrophy thyroid could share their experience with me to try & determine my problems.
I am at the point where I feel I am bashing my head (& life) against a brick wall.
Really appreciate hearing from you. Sorry for long post.
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jellynpain
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Jellynpain, Have you had thyroid peroxidase and thyroglobulin antibody tests to rule out autoimmune thyroid disease (Hashimoto's)? Hashimoto attacks eventually atrophy the thyroid gland but if the half remaining to you was healthy on the ultrasound scan it is likely that it is congenital as your endo said. Half a thyroid gland usually produces the thyroid hormone required.
Can you post your recent thyroid blood results with the lab ref ranges (the figures in brackets after your results) and say what dose and medication you are taking members will advise whether you are optimally medicated.
Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
I can't remember having the thyroid tests re Hashimoto, and will request from my gp and the others for hypothyroidism.
My most recent hormone tests were done by Endo & he won't give me copy of results (asked before said "order your hospital notes, £50, take ages"). I will ask my gp if they have them though. I will post all once got.
I am not on any hormone meds whatsoever.
My concern is that Endo is just reading results & not considering my symptoms (which are very obvious by sight). Could it be that my hormone levels are ok but not metabolicly being converted (think that's how I understood it)?
I get considerable rashing around the thyroid, front neck & on/off swelling, particularly when at my worst. Endo said "everyone gets that"....I don't think so. Even considered Lupus
The NHS is obliged to give you your results. They belong to you by law. They can charge up to £10 for computerised notes to pay for printing, but must not make a profit. They are supposed to *give* you anything that has changed in the last 40 days. You can make a subject access request under the Data Protection act and force them to give you your results.
Jellynpain, patients are entitled under the Data Protection Act to see their test results with 40 days of blood draw free of charge apart from a nominal £1/£2 to cover cost of printer ink and paper. Contact the endo's secretary and ask for them to be sent to you. You may need to contact the hospital lab to get the lab ref ranges if they aren't included with your results. If that doesn't work contact PALS at the hospital and ask them to help.
If you want all of your hospital records you do have to pay £50 for manual and electronic summary records and they should be available within 40 days after payment.
The thyroid gland can swell because TSH is nudging it to produce more thyroid hormone because the pituitary gland has sensed circulating levels are low. It can also swell when having a Hashimoto's attack. Despite clinical symptoms most doctors adhere to the UK guidelines and won't make a diagnosis of subclinical hypothyroidism until TSH is >5 while FT4 and FT3 are in normal range.
Hi, my GP told me I have an enlarged and vascular thyroid gland. Not sure what that means but I don't know if it means atrophic. Hope you get things sorted soon x
Hi, no they're not doing any more tests. Just the TFT. I want another ultrasound because I'm getting pressure in my throat, sore throats keep returning and I have difficulty swallowing. I went to my GP because the consultant said that an enlarged and vascular thyroid suggests cancer but I went to the GP to tell her and she just said "okay". So I don't know what to do.
I have many hypo symptoms still - tingling in feet/legs, heavy periods, constipation, fatigue, dark circles under eyes, pale skin, joint pain, headaches, low body temp, weight loss, wind. If I go to the GP and mention the neuro symptoms she'll probably label me as depressed.
I have similar symptoms, plus chronic fatigue & fluctuating poor mobility, sweating, vision variation. Pressure & dashing to thyroid area & swallowing issues often.
Have you had the 'spect' scan (think called that).
My experience with Neuro was awful. As they couldn't find out problem pushed me to somatic mental health. I declined that. It was ridiculous & lots of medical findings since, so feel there was some arrogance there as in not pursuing correct tests etc.
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No I haven't had the spect scan. I've heard of it. Maybe getting referred to a neuro is a good idea.
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