Hi been feeling achy, exhausted,can sleep 12 hrs but wake up groggy & tired. Everything hurts. Have plantar fasciatis. Patella deformity in knee, spondylitis in my back giving me sciatica. Herniated discs both sides of neck. Causing numbess & pain. Chronic pain syndrome. Cfs/fybro/me. Arthritis in some joints. Basically feel rubbish all the time. I have underactive thyroid,high cholesterol & high blood pressure on meds for all. My recent results were serum free t4. 22.0(11.0-22.6) Serum tsh level 0.12 (0.2-4.00) outside reference range? I've no idea what this means. They just say normal..take levo 100/125 alternate days. If I'm outside range what needs doing..I also look top end of t4.? Do I need referring? Just having more bloods doing,inflammatory markers? Can anyone advise ?
Thank you
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bellemia
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So we can offer better advice, it would be good to see blood test results (with ranges in brackets) for FT3 in addition to TSH and FT4. Plus any antibody and key thyroid vitamin tests (ferritin, folate, vitamins D and B12). The antibody tests will show if your thyroid condition is autoimmune (AKA Hashimotos).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Hi thank you for replying. I've attached recent blood results, they are saying normal. Although I'm convinced the thyroid is causing my symptoms...including random sore throats and swollen glands. Hope you can help with these readings ?
My guess is that you're a poor converter, and your FT3 is too low. Have you ever had that tested? T3 is the active thyroid hormone which causes symptoms when too high or too low.
Three reasons for this conclusion:
a) your FT4 is too high considering your dose, so you probably aren't converting much of it to T3
b) despite your high FT4, you still have many, many hypo symptoms
c) your cholesterol is high, which is almost always a sign that T3 is too low.
What you need now is full thyroid testing - which your doctor/the lab probably won't do:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin.
The nutrient testing is necessary because most hypos have low nutrient levels due to low stomach acid. But you need optimal nutrient levels for your body to be able to use the hormone you're giving it.
Do I need referring?
Difficult question. The majority of endos are diabetes specialists who know next to nothing about thyroid, and often make things worse rather than better. You would have to know your endo before asking for a referral to make sure he knows what he's doing, either from patient recommendation or previous experience. You'd probably be better off learning about your disease yourself and advocating for yourself with your GP - which is what most of us do. There are very, very few thyroid specialists - and most of those that claim to be thyroid specialist turn out to know very little about it.
Your TSH is low, but only doctors worry about that. Patients don't. We know that once you're on thyroid hormone replacement - levo, etc. - it's all but irrelevant, and usually unavoidable. It's low because your pituitary considers you don't need it anymore. And you don't. But doctors have these weird ideas that you're going to have a heart attack or osteoporosis if your TSH is low. You won't. TSH has nothing to do with hearts or bones.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
is this how you did this test
Do you always get same brand levothyroxine at each prescription
Is your hypothyroidism autoimmune
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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