I may or may not be able to get any answers here. I might not even be in the right place.
I'm a 53 year old male and back in 2015 my thyroid swelled up quite a bit. I was referred to my local hospital endocrinology. Where a large amount off brown liquid was drained. At the same time I developed alopecia. All my hair fell out.
I was then diagnosed with a Thoracic Ascending Aortic Aneurysm and the Consultant put all the Thyroid stuff on the back burner. So I had Open Heart Surgery April 2019 to repair the Aneurysm. During a follow up MRI for my heart they noticed my thyroid was still swollen. So I was told I would be referred back for my thyroid.
Now in the interim I developed a Cranial CSF Leak and my ENT Specialist did all the referrals for my thyroid. I had a scan and a biopsy done which showed a large goitre. Now the CSF Leak was repaired in May but I now have another which I'm waiting to get repaired.
However since then around the start of July I've developed an irregular heart rate . Saw my GP who took bloods and thought it could be linked to my thyroid. I then saw my ENT 3 days later and mentioned it. She then checked bloods that had been done whilst in hospital. She said my thyroid blood readings were borderline. The higher reading had been continually going up over time with the other reading going down. I'm not sure which was which but I saw one on her screen that said 19.4?
She told me to recontact my GP to ask to have me referred to an Endocrinologist again. My GP said he thought my lower reading appeared surpassed and confirmed one was 19.4. He contacted an Endocrinologist who said I'd had a CT scan with iodine on the first week of June so he didn't think it unusual. He told the GP to check my thyroid again in 4 months.
Now I'm convinced my alopecia is directly linked to my thyroid and my ENT Consultant is the only one who thinks its a possibility. Everyone else has said ive never heard of that before.
Im back at cardiology next week re my heart rate which my GP thought could be caused by my thyroid.
But when it comes to the thyroid itself I seem to be banging my head against a wall. A'm I completely wrong in my assumptions regarding my thyroid being an issue? Hopefully someone will understand. Thanks.
Written by
cjbroon
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Looking at other posts your on a PPI - omeprazole, this tends to lower vitamin levels, especially B12 and magnesium
A fib often linked to thyroid - hypo and hyper
High cholesterol linked to hypothyroidism too
Alopecia is autoimmune
Having one autoimmune disease makes others more likely
Vast majority of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
9 out of 10 Hashimoto’s patients are female, it can be even harder to get diagnosed as a male
First thing is, do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far, far too often only TSH is tested and is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
So first step is to get hold of your existing test results and see exactly what has been tested
Then see/contact GP and request any missing tests
TSH, Ft4 and Ft3 must be tested together
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thanks for the reply, I'll try and work my way through it all and see if I can get anywhere. My last thyroid blood test at the GP was done in the afternoon. From my original post it should say my GP thought my lower reading was suppressed rather than surpassed. I'm hoping my ENT specialist might be able to get somewhere once I see her again and give her an update. Though I probably won't see her before she does my surgery. Though, she is in a different Health Board area to my GP etc. She may be able to speak with endocrinology in that area and get me seen.
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