There's more in my Profile, but in a nutshell I was diagnosed underactive (hypo) in 2009 and have been on levothyroxine ever since. Things were fine until late-2015, then I started to experience the symptoms again with a vengeance. Extreme tiredness, inexplicable weigh gain, fuzzy head, worsening memory. Saw 2 endos, they increased my dose to 175/200 alternate days to get TSH down from 2.9 to 1.00. TSH has since fluctuated from 2.90 to 0.09, and all points in-between. It goes up and down, and the dosage has been changed up and down to try to compensate, and to reach a level of 1.00 (dosage is currently 150 per day). My GP doesn't have a clue about thyroid problems, and both endos poo-poo'd my suggestions of trying T3 or Armour Thyroid. I have now been signed-off by the latest endo.
A private test last week showed my TSH as 0.881 (range 0.27 - 4.20). I had a regular NHS test a few days ago, and I assume this will show a similar TSH to last week's test - so the GP obviously isn't going to change anything.
These are last weeks private results:
TSH 0.881 (range 0.27 - 4.20)
Free Thyroxine 18.5 (12.00 - 22.00)
Total Thyroxine (T4) 98.3 (59.00 - 154.00)
Free T3 4.63 (3.10 - 6.80)
Thyroglobulin antibody 31.200 (0.00 - 115.00)
Thyroid peroxidase antibodies 269 (0.00 - 34.00)
Ferritin 213 (30.00 - 400.00)
Folate 6.25 (2.91 - 50.00)
25 OH Vitamin D 70.4 (50.00 - 200.00)
Inflammation CRP - High sensitivity 1.29 (0.00 - 5.00)
I'd really appreciate it if the experts here could give me their opinions on these readings. I'm happy to get some Turkish T3 on the internet, or try a gluten-free diet, or boost my D3 intake (currently 1000 per day) - whatever it takes to get anywhere remotely close to feeling human again! Thanks in advance, Nick
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bristolboy
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Can you get GP to test B12 and folate together. Or you could test privately
You have Hashimoto's and getting gut healing is key
Gluten free, plus probiotics, fermented foods like kefir and sauerkraut etc
Likely FT3 will improve a bit, but it may not be enough.
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 gut connection is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Thanks SlowDragon for such a helpful and comprehensive reply (you must be able to answer questions like mine on auto-pilot now!).
I'm sorry, I overlooked the Active B12 reading - it was 161.000 (25.10 - 165.00) - is it significant?
Armed with all this information, I feel confident enough to speak frankly to my GP. I fully expect her to reject some of it, but I will press for a coeliac blood test (before going gluten free) and a Vitamin D prescription. I will also ask her if there is an endo in my area (Bristol) that is still willing to prescribe T3 - and if there is one I want to be referred to them.
Assuming, as seems likely, I don't get referred to a T3-prescribing endo, would I do much harm in sourcing T3 off the internet and trying a low dose (say 25 per day) to see if it helps? Should I reduce my 150 per day Levothyroxine if I start to add some T3?
Your GP won't prescribe any vitamin D, she will consider it at acceptable level.
Easy to buy Vitamin D OTC. With Hashimoto's, mouth spray is recommended as it avoids poor gut function.
Better You do various strengths. You could buy the 1000iu and do 2 or 3 spray per day, or choose the 3000iu
Do you take an B vitamins or multivitamins with B12 in? Either now or in recent past. Your active B12 is high
Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists, some are T3 friendly
Tukadmin@thyroiduk.org.uk
See if there's an NHS endo in Bristol
Asking GP for coeliac testing is a good opening to discussing ongoing issues and possible referral
Selenium supplements can help too
As can vitamin C
Plus do you take Levo at bedtime or morning.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
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. Watch out for brand change when dose is increased
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, lowest FT4 and most consistent results
Would suggest you get vitamins optimal first and on to gluten free diet.
Then get bloods retested in 6-8 weeks
If you decide to self medicate T3, it needs adding incredibly slowly (eg 1/4 tablet of 25mcg). It depends what your level of FT4 is, wether you need to reduce Levo at same time or not.
Only change one thing at a time, or you don't know which is causing any improvements (or not)
I take a daily multi-vitamin tablet containing B1, B2, B3, B4, B5, B6 and B12. The B12 content is 2.5 micrograms. Would that affect my B12 reading - and what is the implication of a high reading? Would you suggest stopping the multi-vit, or perhaps trying to find one without B12 in it?
I also take 3 glucosamine and chondroitin tablets each containing 500mg of Glucosamine and 100mg of chondroitin sulphate. Also 25mg (1000iu) of D3 and 1200mg of Omega 3 each day.
I take my Levo first thing in the morning, at least an hour before eating (or drinking anything apart from water). Although I've only been doing it this way for the last 3 months - before then I was taking it immediately before breakfast, because I didn't know any better! Ditto with blood tests - the 2 this month were first thing in the morning, on an empty stomach, with no Levo until after the test. Until then, I just booked them for any time of day and took my Levo at the usual time before breakfast - the doctors never told me!!!
I can't say I feel any better since starting to take my Levo in the correct way. I was considering starting to take it just before going to bed - I usually eat around 8.00pm, and go to bed around midnight - are those timings ok? Would I be allowed a cup of tea about half an hour before taking it?
Yes taking any B12 vitamins pushes test results up, but as B vitamins are water soluble it's apparently not a problem taking "too much". Plus apparently very little is actually accessible.
Some links about B12
Using test of Homocysteine levels to check for low b12
Wow, you're going to keep me really busy with all this reading - but I'm determined to get there, it might just take a bit of time!
I won't know whether my THS has lowered since taking Levo "correctly" because I haven't got "before" and "after" readings from NHS tests yet - but I'll have the result of last weeks test in a day or so, so will know then.
I think a good starting point is to get some more Vitamin D into me, and start speaking to my GP about a coeliac test (and maybe another referral to an endo). If it turns out I'm not coeliac, that's obviously a good thing but, either way, it looks like I'll have to go gluten free.
Bloods re-tested in 6-8 weeks.
I won't do anything about T3 until vitamins are correct, and gluten-free diet has settled in and bloods have been checked again.
Does that sound about right?
Do you think I need to be doing anything about the high B12 at this stage?
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