Unresolved thyroid issue?: Hi all, I posted a... - Thyroid UK

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Unresolved thyroid issue?

Mall1 profile image
7 Replies

Hi all,

I posted a couple of months ago - not sure how to do multiple photos so separate posts with blood results from June. I have tried my best with gluten - I keep finding it hidden in foods but mostly cut it out. I have bought supplements from autoimmune institute and been prescribed vitamin D although I bought the spray containing K2 from better you. I’m still miserable with chronic joint pain but bloating is better. There is not as much stress as I’m off work. I have had several visits to consultants - gyn for bloating, where the consultant said I need to reduce belly fat (the nurse was clearly appalled - I weighed 10 stone at 5ft but too tired at that point to exercise.) I have been to ear nose and throat due to choking sensation and hoarse voice. The consultant made me feel his trachea and had students in - I felt ridiculed. I have had a lower bowel inspection for bloating and severe constipation. I only ever wanted to see an endocronologist to discuss options - I dared to ask about T3 and was told by the surgery that they are not allowed to prescribe it. I have been on levythyroxine for 20 years, never felt right, no zest for life but I want to carry on and help myself. I asked the doctor to never mention antidepressants again. They did try and send me to an endo but because bloods were ‘normal’ the appointment was refused. I waited patiently for this but surgery did not tell me. The issue of antibodies does not concern doctors and this scares me. Is it possible that levythyroxine can stop working or menopause is affecting me badly. I will post other results. If anyone has advice, I would be grateful.

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greygoose profile image
greygoose

Have you had your antibodies tested? Doctors have no idea what antibodies mean because they don't learn about Hashi's in med school.

How about FT3? Have you ever had your FT3 and FT4 tested together to see how well you convert?

Your TSH and FT4 are good, but that's only part of the story.

Your vit d, on the other hand, would be better a bit higher, but the doctor probably didn't prescribe enough to raise it - they rarely do. Did he prescribe D3 or D2?

Mall1 profile image
Mall1 in reply togreygoose

Medichecks test 3 months ago revealed high ferritin at 254 ugl (range 13-150), free T3 was 4.73 pmol/L (range 3.1 - 6.8), thyroglobulin antibodies (291.000 k/UL range less than 115. Blood sugar is slightly elevated and liver count has been slightly high in previous test. Doctors say they cannot find anything. The vitamin D prescribed was 800 iud Fultium D3. I have seen several doctors in the Practice - no one is concerned with antibodies and cannot see endo because they refuse due to bloods looking normal. If I was to go to a private consultant am I right in thinking it will just be an NHS consultant with the same mind set?

greygoose profile image
greygoose in reply toMall1

The average private consultant is just an NHS consultant as far as training goes, yes. They have no special training in thyroid and are usually diabetes specialists, just like the NHS endos.

Did you have an FT4 result to go with that FT3 result? The two should be considered together. And what were your TPO antibody results? Doctors totally ignore TgAB because they don't know what they are and don't believe the indicate Hashi's. But, even the TPOab they know nothing about. But, even if they did, there's nothing they could do about them. There's no treatment for Hashi's.

As I suspected, that dose of vit d is too low to do much. And, your ferritin was high, but did you have a CRP result? If that was high, then that could account for the high ferritin.

No thyroid result there, or results for vitamins/minerals that might affect your thyroid. You can refuse to have students present.

SlowDragon profile image
SlowDragonAdministrator

Your previous post of full private testing showed you likely are under medicated since dose of Levothyroxine was reduced

healthunlocked.com/thyroidu...

However since improving vitamin D and by going absolutely strictly gluten free your conversion may have improved

Obviously the NHS is not interested in testing FT3 because they don't want to prescribe it

mjauk.org/wp-content/upload...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Suggest you get full Thyroid and vitamin testing again soon

Two options, you push for increase in Levothyroxine or you see endocrinologist privately who would prescribe T3. Clearly you won't get NHS referral

Before seeing any thyroid specialist endocrinologist we ALWAYS recommend getting full Thyroid and vitamin testing just before appointment

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3

thyroiduk.org.uk/tuk/About_...

Assuming trial of T3 goes well, then getting DIO2 gene test can help get T3 prescribed on NHS ..assuming you test positive (it's a relatively common gene variation- approx 20% of thyroid patients test positive)

thyroiduk.org.uk/tuk/testin...

Mall1 profile image
Mall1 in reply toSlowDragon

Thank you. I can’t think clearly so outlining all of that helps me. I will get another Medichecks test done and see if I can get DI02 gene test as well just to check one way or the other. I’ll post results as soon as I get this organised.

SlowDragon profile image
SlowDragonAdministrator in reply toMall1

Just sent you a PM

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