Hi all, I have just joined this forum and would like some advice please. I was only diagnosed last Thurs and my GP has emailed the local hospital Endocrine Dept for advice on my medication. I haven't heard further yet and I have no idea on whether this is mild and will need medication or not. Here are my levels:
TSH <0.01 (0.35-5)
Free T3 14.8 (2.6-5.7)
TPO Positive 39.2 (0.0-5.6)
Free T4 27.8 (9-22)
I have lost a stone since being on lockdown, cannot sleep at all, very shaky hands, and just so tired!
If anyone has advice on any treatment and for how long I would be grateful. My GP said I may not be able to have Beta Blockers due to having asthma.
Any advice or tips would be great while I am waiting!
Thank you everyone,
Lols
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I was only diagnosed last Thurs and my GP has emailed the local hospital Endocrine Dept for advice on my medication.
Overactive thyroid (Graves Disease) can only be confirmed by positive TSI and TRAb antobidies which are done in the endocrinology department, not a GP level. Postive TPO antibodies do not confirm Graves Disease, they suggest autoimmune thyroiditis, aka Hashimoto's, which is where the immune system attacks and gradually destroys the thyroid, causing hypothyroidism. Hashimoto's tends to start with a "hyper" episode where the TSH is low and FT3 is high. Those results more likely suggest Hashimoto's than Graves, assuming that your FT3 result is a typo.
Before taking any medication for overactive thyroid (which will very likely be Carbimazole), insist on TSI/TRAb antibody tests done first.
In which case I would put money on this being Hashimoto's not overactive thyroid.
Ah ok I need further blood tests first then?
to be absolutely sure, and to rule in (or out) overactive thyroid/Graves disease, you need TSI (Thyroid Stimulating Immunoglobulin) and TRAb (TSH receptor antibodies) antibody tests done. Your GP is unlikely be able to do these, they are done in the endocrinology department at hospital.
Thank you for this, oh my its very confusing. These abbreviated lab tests mean nothing to me. I thought thyroid is overactive or under! I thought it was a simple thing.
When my GP telephoned me on Thurs she did say there was another test result she was waiting on whuch hadnt come through which would tell her the type of thyroid problem.
So maybe thats another antibody test? I have no idea.
Maybe l should just be more patient and wait for my GP to ring and let me know the next step.
These are very high hormone levels. Your doctor should consider giving you a beta blocker such as propranolol in the short term. This will protect your heart and reduce T4 to T3 conversion which will help you feel better and reduce the effects of too much hormone. After speaking to the endocrinologist they will probably prescribe carbimazole to reduce the amount of hormone your thyroid is making. Just noticed your ashma and beta blockers, in which case something like carbimazole should be introduced sooner rather than later.
If you haven't heard back within a few days perhaps ask your doctor to telephone the endocrinologist just in case the hospital is not on top of their e-mails.
Usually these sort of results are due to the TSH receptors in the thyroid being over-stimulated. This is indicated by high TSH receptor antibodies, usually referred to as 'TRAb'. You haven't had these measured so this should be done when convenient. It can also happen in autoimmune hypothyroidism, as the thyroid is attacked it can have erratic secretion. This can show up as high TPO antibodies although yours are not that high and it's more likely you have high TRAb. This is not an urgent issue, it's more important to get your hormone levels down now and take action to protect your heart and help you feel OK.
Make sure your GP has a plan to get your hormone levels down soon so that you start to feel better. All the other stuff can wait, at this stage it's academic. It will be useful to know exactly what is going on (autoimmune hypothyroid flare up or hyperthyroidism) but it's more important to normalise your hormone levels first.
I've little knowledge onthe subject but I believe you can take beta blockers, your GP could swot up on this or seek advice.
These results could be due to Hashimoto’s.....autoimmune thyroid disease, that eventually becomes hypothyroidism, but almost always starts with transient hyperthyroid results and symptoms
ESSENTIAL to test TSI or Trab antibodies to confirm Graves Disease (autoimmune hyperthyroidism)
Far too frequently GP will assume these sort of results are Graves....but turns out to be Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s and a TSI or Trab antibodies for Graves’ disease
EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, With Hashimto’s or Graves
Ask GP to test vitamin levels and TSI or Trab antibodies
slightly raises TPO antibodies could be due to Graves or 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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or all thyroid antibodies or all relevant vitamins
The jargon can be a bit overwhelming to start with.
Look at helvella 's excellent glossary [pinned on the right] which explains all the terms and abbreviations used. There's also a lot of useful stuff on the Thyroid UK site.
My levels were a lot higher than yours and I was left for over 2 years with a suppressed TSH of 0.002. You can imagine how ill I felt and I was fobbed off by my GP who said I was suffering from the menopause because I was 47. You can read my story on my profile page if you are interested. Just to add I am still here and after having a thyroid storm last year I am now in my second remission. Elaine Moore helped me get diagnosed and I would join her site and ask for her advice.
So my GP has phoned this morning, she has heard back from the Endocrinologist. I am to be started on 30mg Carbimazole.
I did ask if she had received my other test result which confirms the type of thyroid problem and she said no it takes weeks to come through.
I asked how is she sure then that this is overactive thyroid and she said its almost definitely Graves Disease, and the Endocrinologist thinks so too. They said the test will just confirm what they already know......
So i am to start today on tablets, I hope this is right??!!
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