Update - different results via Private and NHS

Added this update to my original post then realised I'd be better off starting a new post.......

Well following the great advice people on here gave me, I went back to my GP and asked to be retested. I got the earliest appointment and fasted and the results were almost identical to the original ones I had done with Medichecks! Here's a summary of the results -

21st March - Medichecks:

TSH 7.52 (0.27 - 4.20)

Free Thyroxine 11.81 (12 - 22)

29th March - NHS

TSH 2.5 (0.35 - 5.5)

No other results on printout so I assume Free Thyroxine wasn't tested

12th April - NHS

TSH 7.56 (0.35 - 5.5)

Free Thyroxine 13 (9 - 23)

GP was going to do nothing as free thyroxine was in range but I said he had to do something as I feel absolutely dreadful! I now have a trial of 3 months of 25mg levothyroxine and have been taking them every morning, an hour before eating, for the past week. Having read so much on here, I have ordered a test from Medichecks which also will test FT3, TT4 and the TGAb and TPOAb antibodies.

Am taking Vitamin D3 (10,000 IU per day) and B12 (1000 ug per day). I also have some ferrous sulphate I am taking to raise my ferritin levels.

My GP told me to come back in 3 months to be retested. Does that sound reasonable? Any advice on what I should be doing now would be much appreciated.

Thanks

10 Replies

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  • DJ_1996 "My GP told me to come back in 3 months to be retested. Does that sound reasonable?"

    No, it's not reasonable. Retesting should be done 6-8 weeks after starting Levo. 3 months is far too long. It takes 6 weeks for the full effect of Levo to be felt, so there is no point in waiting any longer. As 25mcg is just a starting dose, increases in dose are inevitable, so why prolong being so unwell when treatment can continue at a faster pace.

    Did you have your vitamins and mineral levels checked before you started D3, B12 and Ferrous Fumerate?

    Are you taking D3's important co-factors K2-MK7 and magnesium, and taking D3 and magnesium four hours away from Levo, and Ferrous Fumerate with 1000mg Vit C and four hours away from Levo plus two hours away from other supplements and medication?

  • Hi. I did think 3 months was a long time to wait for a retest! The last thing I want is more delay in getting the dosage sorted and hopefully feeling some improvement. I know it will take a while to feel any effects but like you say, why make me wait longer than is necessary?

    These are the results from my first test with Medichecks:

    VITAMIN B12 154.4 pmol/L 140.00 -724.00

    FOLATE (SERUM) 4.02 ug/L 3.89 -26.80

    25 OH VITAMIN D *25.41 nmol/L 50.00 -200.00

    I do have some 250mg magnesium so should I take that with the D3? I looked up the K2 supplements on Amazon when I bought the D3 tablets but forgot to order them - brain fog is terrible at the moment. I'll take another look and get some. I take the levo as soon as I wake up then I take the D3 and B12 with my lunch and the iron tablets when I go to bed. I think I have some Vitamin C already so I'll start taking those at bedtime too.

  • DJ_1996

    VITAMIN B12 154.4 pmol/L 140.00 -724.00

    - you should increase your sublingual methylcobalamin B12 to 5000mcg daily, finish the bottle (usually about 60 lozenges) then go back to the 1000mcg daily. The 5000mcg for a couple of months should boost your B12, then the 1000mcg should maintain it. Aim for very top of range, even 900-1000. Once I reached 1100ish I reduced my 1000mcg to 5 days a week instead of 7 days.

    FOLATE (SERUM) 4.02 ug/L 3.89 -26.80

    - you need a B Complex when taking B12 as you need all the B vitamins balanced. If you get one containing 400mcg methylfolate then that will help raise your folate level (also eat plenty of greens, google folate rich foods). Have a look at Thorne Basic B and Metabolics B Complex. Folate should be at least half way through it's range.

    As a bit of an afterthought, with both B12 and folate so low in their ranges, it might be an idea to pop over to the Pernicious Anaemia Society forum here on Health Unlocked for their advice. They might suggest asking your GP to test for Pernicious Anaemia, I'm not sure, but they are the experts and it's worth checking to see if you should just supplement yourself or see your GP.

    healthunlocked.com/pasoc

    25 OH VITAMIN D *25.41 nmol/L 50.00 -200.00

    - 10,000iu D3 daily is a good loading dose. Continue for about 8-10 weeks then retest. Once you've reached the recommended level of 100-150nmol/L you should reduce to 5,000iu alternate days (or maybe 2000iu daily, depending on the dose of your supplement) as a maintenance dose. You may need less in the summer. You will need to supplement for life and retesting once or twice a year is recommended when supplementing.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day. Have a look at Jarrows MK7, it is a softgel with olive oil.

    The magnesium you have will be fine. As magnesium is calming it's best taken in the evening. You might have to rethink the timing of the iron, maybe you could bring that forward a bit and leave two hours before taking the magnesium.

  • Loads of useful info for me there - thank you so much! I do have some magnesium oil which I used to use at night as I was getting terrible restless legs so I might dig that out of the cupboard now. I'll have a look at the supplements you have suggested too - any excuse to go shopping on Amazon :-)

  • Three months is too long. It takes about 6 weeks for your body to adapt to a particular dose of thyroid hormones, and blood tests done then will show you the effect.

    If you are under-medicated, which you almost certainly will be on 25mcg Levo, then making you wait another 6 weeks beyond that before doing blood tests is cruel. Also, 25mcg is an overly-cautious starting dose, unless you are old and decrepit with a heart problem. He should have started you on 50mcg (in my opinion).

    TSH 7.56 (0.35 - 5.5)

    Free Thyroxine 13 (9 - 23)

    Your latest Free T4 result is surprisingly good for someone with a TSH of 7.56, even though it isn't even mid-range, and would be too low for most people. It's a pity that you didn't get Free T3 tested before treatment began. I think it is likely that low Free T3 is driving your TSH upwards. If/when you get Thyroid Function Tests (TFTs) done privately in future, please always include Free T3.

    Do you have to see the GP to get a form to get blood tests done, or do you already have the form? Is the GP expecting to see you in person before the blood tests? How is the testing being arranged?

    If you can get testing done after 6 weeks, then do it. Be prepared for your GP to be annoyed if you get testing done early. But he's wrong to make you wait so long.

    If you look at this link :

    cks.nice.org.uk/hypothyroid...

    In amongst all the blurb is this section :

    If TSH is between 4 and 10 mU/L and FT4 is within the normal range

    In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

    [My emphasis]

    Your doctor seems to have missed the phrase after TSH stabilises.

    It is also worth looking at this page :

    cks.nice.org.uk/hypothyroid...

    Initiation and titration

    The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

    The initial recommended dose is:

    For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

    This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

    For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

    Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

    [My emphasis]

    Notice that raising the dose is suggested every 3 - 4 weeks. (Most of us here think 6 weeks is better.)

    You are going to have to find a way to get those tests done after 6 weeks. Make sure testing is done early in the morning (by 9am at the latest) and make sure you have fasted overnight except for water. Find a reason why you can't be there after 9am if necessary (work-related?). Take the previous day's Levo 24 hours before the blood test, even if it means changing your normal time to take it for that day. Don't take Levo on the day of the test until after the blood draw.

  • Thanks for that info. It does look like he has started me on too low a dose doesn't it. I'll be sure to go back after 6 weeks. I didn't expect to feel much better after a week but to be honest, another 6 weeks of feeling like this will be enough to have me back to the surgery wanting a retest! I'm back to work on Monday after 2 weeks off and I could still sleep for another week. I never go to the doctors normally but I have been with the same surgery for 25 years and the permanent doctors there (not the locums I have been seeing lately) are normally very accommodating so I think it'll be ok being tested earlier (ha - famous last words!)

    I bought the test kit from Medichecks which also will test FT3, TT4 and the TGAb and TPOAb antibodies; that will be arriving tomorrow so I will know more when those are done. I'm guessing it would make sense to stay off the levo for 24 hours before I do them?

  • " I'm guessing it would make sense to stay off the levo for 24 hours before I do them? "

    Yes, whenever doing a thyroid test (private or at your surgery) leave off Levo for 24 hours, test as early as possible, and fast overnight. Essential for comparing results accurately, and extremely important when looking for an increase in dose of Levo or to avoid a reduction, as you get the highest TSH that way.

  • I would suggest using the test kit 6 weeks after you've been on Levo. Before then your levels will still not have settled.

  • Ah ok. Thought it might be worth getting antibodies checked as people on here often suggest they should be checked as well as FT3? Or is that just worth doing if I find I'm not having any success with levo? I'm probably just being impatient - I've been feeling wiped out for years now so 6 more weeks isn't going to make much difference. I'll take your advice and wait. x

  • I think it makes economic sense to do the antibodies at a time when it is sensible to do Free T3 as well. It doesn't really matter too much when you do the antibodies, but doing the Free T3 when you've been on a specific dose for 6 weeks is a good idea. So, do them together.

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