Hi everyone. Newly diagnosed and just picked up some levothyroxind. So I had a phone conversation with the GP (at my request!) they were going to just prescribe me thyroxine and not tell me much else! He was nice but not overly informative. I collected a copy of my blood results. But they didn’t include my tryroid function test would you believe! Although the GP told me my:
TSH was >100 and my T4 was 2.3.
The rest of my bloods I was told we’re normal however when I’ve looked they don’t appear to be. The abnormal ones are as follows:
VIT D - 43. Normal range ( >75)
Erythrocyte sedimentation rate - below range 1mm/h (5.0-11.0)
Serum creatinine above range 102 umol/L ( 45-84)
EGFR using creatinine -below range 63ml/min (90-200)
Serum creatinine kinase level above range - 314 U/L (25-200)
Serum folate 1.9ug/l (2-18.7)
I’ve booked a GP appointment for Monday, at my request and I’m ready to go armed with questions if anyone has any advice on what to ask?
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Lisasue87
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Remind the GP that you are entitled to your results under the Data Protection Act and that you need the lab ranges as well as the numbers. Ask what he is going to do about your under range folate and ask for B12 to be tested (and pernicious anaemia if you have any symptoms of low B12). You should NOT supplement folic acid without testing B12 as it can mask B12 deficiency. Also ask for ferritin to be tested (and a full iron panel, perhaps). Free T4 of 2.3 sounds unlikely (not impossible) as most lab ranges start at 12. Don't forget to book a repeat blood test for thyroid in 6 weeks and try to get TPO and TG antibodies included so you know if you have Hashis (autoimmune thyroiditis) or not. make sure the starting dose of levo is 50mcg not the 25mcg given to people who are very frail or have heart disease. The Gp probably won't prescribe more than 800iu vitD, which is useless, so you'll have to source your own - plus the prescribed vitamin D doesn't tend to be very good quality.
Thanks for the reply. I have a full range of bloods done.
B12 - 344 (197-771)
Ferritin - 24.4 (20-130)
HB - 137 (115-148)
Wcc - 5.9 (4.5-14.0)
Platlets 236 (140-400)
Mcv - 95 (84-99)
Hba1c - 34 (23-41)
That’s cheesy advice Thankyou. I will add that to my list. I’ve been started on 50 mcg of levothyroxine. And he’s suggested 6 week retested as you have said. They confirmed the free T4 is 2.3 and I was contacted at night my the OOH GP as she was concerned. Although my own GP didn’t make much comment about it. He also said it’s not necessary to do the antibody test?
Any ideas where I would get good quality vit D and how much I should supplement?
LOL! You need iron tablets - ferritin needs to be at least 70, but you might need to source your own as you aren't actually anaemic yet. Your B12 is too low - needs to be over 500 and aiming for the top of the range, so you'll need to find some sublingual methylcobalamin (try Jarrow formulas 1000 or 5000iu) as it's not low enough for injections. Vit D needs to be at least high 90s
Your eGFR and creatinine kinase are jumping out as things that very obviously need follow-up unless you know that you have had a kidney problem or are taking medications with known effects on your kidneys? Do you have a diagnosis of diabetes type 2 or hypertension? Maybe diogenes or helvella has an opinion?
Your vitamin D level is inadequate and needs supplementation to raise the level. However,, tbh, given your kidney results, I'm wondering if you need calcium, PTH testing etc. before taking anything.
Angel of the North has mentioned the B12 and folate relationship and how that should be handled.
I’ve added my other blood results above. Is the kidney function test quite bad then? My heads spinning a bit, imagining kidney failure and all sorts!! Am I being a drama queen lol?!
ParaThyroid Hormone (PTH). You can need to measure this in conjunction with the calcium, vitamin D etc. as they're inter-related. It's to rule out a problem rather than to rule one in, really. It's just a belt and braces to follow this up if you don't improve once other things do.
Your kidney function is a little bit less than I'd expect for your age. You can read more about the usual ranges here: nhs.uk/conditions/kidney-di...
I just think it needs a plan for follow-up. It might be as straightforward as 'things will return to normal when everything else normalises'.
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Teva brand in particular seems to cause some people problems
All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Do you also have high thyroid antibodies? You need to know. Did GP ever test these? If not ask that they are tested.
Your 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
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
So you can see why knowing if you have high antibodies is important
If they are high, Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Your GP can only prescribe 800iu vitamin D, not worth having, as likely far too small dose
Vitamin D, especially with Hashimoto's it can be good idea to use vitamin D mouth spray (avoids gut) Various strengths available. 3000iu is probably good to start. Retest after 2-3 months
Vitamindtest.org.uk £28
Test twice yearly, aim at keeping between 100-150nmol.
If you need an endo, it's only really worth picking one of your own choice. Most are Diabetes and very little about thyroid, especially Hashimoto's. Thyroid UK have list of recommended ones by email. But should wait and see how you get on first
If you can not get full thyroid and vitamin testing from GP
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 money off offers.
You can also just get antibodies tested. Or TSH, FT4 and FT3 plus antibodies. You could do this after 6 weeks on Levo, if GP won't test antibodies or FT3
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Just thought I'd mention, I've only ever taken Levothyroxine for many years, and have never worried too much about a few things mentioned... antibodies (which I do have), and a slightly low efgr too. I seem to be one of the lucky ones, but we may be the silent majority.
I have heard that if the whole population were to take a vit D test, most would be lacking.
I'm only saying this because there are lots of people on here, who find that levo is not enough and they health issues. Rightly so, they try and improve things, but it may be that the GP wants to see whether things settle once you are on the correct dose. You may not face further problems.
Also, from memory I believe iron tablets shouldn't be taken unless needed. If you take supplements, let your doctor know too, as they need the full picture.
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