Have just got latest blood test results and have GP appointment tomorrow morning. Not surprised to see only TSH on there - nurse says they only test for what GP has asked for - it has to be authorised by them. GP seemed pretty off-hand when I last saw her (20th March 2019) and said everything was ok but I could drop my dose to 50 mcg (from 75 mcg). How I dread tomorrow morning! Have not felt good, fatigue, nasal congestion and sore throat at night, low mood, cold, non-pitting oedema ankles in evening and low temperature. Am posting what I've got for any comments. Thanks for reading:
NHS
Test result from test on 30/05/19 TSH 2.10 (no reference range on print-out - just laboratory number)
Previous test on 27/08/18 TSH 0.68 - no range as above.
Previous test with Medicare on 05/03/19 - TSH - 0.323 mlU/L (range 0.27 - 4.2)
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notpink
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Why on earth would she think you would want to drop your dose to 50 mcg with a TSH of 0.68? It's not out of range, and even if it were, I wouldn't do it without seeing an FT3. Why did you agree to do it? The result is now a TSH which is much too high, but she's going to say 'well, it's in-range'. I don't think she knows much about thyroid. Well, there's a surprise!
I took the medichecks blood test results to my appointment on 20/03/19 and medichecks GP recommended an adjustment as I didn't feel well, perhaps lower the dose: that test was on 05.03.19 Free T3 4.41 pmol/L (3.1-6.8) Free Thyroxine 24.1 pool/L (12 - 22) and TSH 0.323mlU/L (0.27 - 4.2).
Sorry I have just seen the range for test on 30/05/19: TSH 2.10 (0.35 - 5.00).
You're right I don't think she's up to speed with any of this and I'm feeling very vulnerable. I suspect there's a conversion deficit but my thinking is to get another full thyroid and vitamin profile done to see what vitamin levels are like - I have been supplementing. My son is also hypothyroid so suspect a genetic link too. Thanks for your comments.
According to those Medicheck results, you definitely do have poor conversion. So, reducing the levo will reduce the already too-low T3 and make you feel worse.
It's really not worth getting the comments from the Medicheck doctor. S/he is only a bog-standard GP with an NHS training, so knows very little about thyroid.
Thanks greygoose. I just feel so uncertain about all this. Having read some of Dr John Lowe's story and how he self-medicated for most of his life with T3 and lived well, it makes me want to tentatively explore this and take control. Life indoctrination makes me a little hesitant!
Yes, I can understand that. I was lucky enough to come across a doctor that encouraged me to self-treat. He was a private doctor that cost they earth, and he said, you don't need me, you're perfectly capable of doing it yourself, instead of wasting your money coming to me.
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 if Thyroid antibodies are raised
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).
Is this how you do your tests?
Guidelines are that patients need 1.6mcg per kilo of weight as rough estimate. So find out your weight in kilo x 1.6 = a good approximation of what dose you might need as minimum
Eg 10st = 63.5 kilo x 1.6mcg = 101.6mcg
Just testing TSH is completely inadequate
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Have been to GP. Awful! She said everything was normal with TSH in range, so all's well! I said "what about how I feel? I still have symptoms". I gave her a short list and she immediately honed in on "low mood" and said "of course, that could be the cause of many things". I said "hair loss/dry skin?" She replied: of course hair loss has nothing to do with the thyroid and as we age the skin gets drier. I tried to bring T4/T3 into the conversation - she wasn't having it. Then suggested being referred to an endocrinologist. She said she could do that, but no guarantees he would accept the referral and it would be a local man, who she mentioned was in agreement with her about T4/T3 not being relevant for testing or something.....I began to lose the will to live! So, now what - do I try and get T3 or NDT and prior to that get tested to make sure vitamin levels are optimal? I have been supplementing, sporadically. I certainly have no intention of going back to that GP. Would welcome any thoughts from anyone - and thanks for your reply Angel_of_the_North.
Never mention low mood! I would get the TUK list of decent GPs and endos and try to get see one of those. I thought the whole point of NHS choose and book was that you could Choose - and book. But it appears to be no choice - booked for you.
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Blood test results and dismissive GP
Antibodies blood tests.
Blood Test Results for Thyroid
Blood test results received
Blood test results - not happy!
