Help with test results please: Hi I would... - Thyroid UK

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Help with test results please

Janm51 profile image
14 Replies

Hi I would appreciate it if someone could review below for me (doc has increased levo from 150 to 175 on the back of TSH result). Also would T3 help me? Thanks

T4 18.2 (10.00 - 25.00pmol/L)

TSH 7.54 (0.40 - 4.00mlU/L

B12 319 (191.00-663.00ng/L)

Folate 8.6 (4.60-18.70ug/L)

Vit D 93.8 (50.00 -175.00nmol/L)

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Janm51 profile image
Janm51
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SeasideSusie profile image
SeasideSusieRemembering

Janm51 It's impossible to say if T3 will help without your FT3 being tested at the same time as your FT4.

Your TSH is high and FT4 mid range. The increase in Levo is the right thing to do. You should have another test 6 weeks after your increase and see where your levels are then to see if you need a further increase.

Your B12 is too low. Anything under 500 and there's a risk of neurological problems. The Pernicious Anaemia Society recommends 1000. You can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg daily for about 3 months then reduce to 1000mcg daily as a maintenance dose.

When taking B12 we also need a B Complex to balance the B vits. Thorne Basic B or Jarrows B Right are both good brands and contain methylfolate which will help raise your folate level which should be at least half way through range which is 11.65+.

Vit D is almost at optimal level, recommended is 100-150.

Janm51 profile image
Janm51 in reply to SeasideSusie

Thanks so much Seaside Susie. I am desperate to feel well again. I have just been signed off work for 3 weeks as exhausted, terrible headaches and terrible head to toe sweating. I work full time in quite a demanding job and rarely take time off but I just feel floored at the moment. My GP has also given me something for sweating (also used to treat ADHD apparently!) so hoping that helps.

SeasideSusie profile image
SeasideSusieRemembering in reply to Janm51

Actually, I'm quite surprised that your TSH is so high with that level of Levo. I've looked back at your other post and it's made me think of a couple of other things. It's possible your levo isn't being absorbed or that Levo isn't right for you. Hopefully someone else will come along with some suggestions.

Firstly, you mentioned thin hair. This can be caused by hypothyroidism but also by low ferritin so you need to get that tested. There's a good chance that could also be low and it needs to be at least 70 before thyroid hormone can work. In fact all vitamins and minerals need to be optimal so you may find you need an iron supplement as well as those suggested above.

Weight loss won't happen until you are optimally medicated thyroid wise and it's not a good idea to only consume 500 calories in order to lose weight and if that is actually what you are doing at the moment then you should start eating a good, balanced diet.

HRT - I don't know much about the different ones because it's not something I was will to consider but there's a very good chance it can affect whether Levo is affected by it. Someone may know so perhaps do a post with HRT and Levo in the title, or something and see what replies you get. I imagine at the very least you shouldn't take them at the same time.

What is this other medication prescribed for the sweating? Again, you should be looking for interaction with Levo.

It's very unlikely your GP will be able to test for FT3 but it's worth asking, also ask for antibodies to be tested to rule out (or in) autoimmune thyroid disease. If you can't get these done through your GP I would do a private test through Blue Horizon. It will duplicate the tests you've mentioned above but it will test ferritin and both types of thyroid antibodies as well as FT3 bluehorizonmedicals.co.uk/e... and will give you a full picture.

Janm51 profile image
Janm51 in reply to SeasideSusie

Thanks Seaside Susie. Medicine prescribed for sweating is Clondine Hydrochloride (doc replaced HRT with this last week as was only taking HRT for sweating and it wasn't helping and doc was worried that it may also be contributing to my headaches). Appreciate your ref to iron, I did ask doc if she would test for this as well as Cortisol levels - which she said she would - but these did not appear on results. I will def get an iron supplement - I have already ordered the Jarrow's b12 and b supplements (good old Amazon) and am going to get blue horizon test - determined to get better. I am also going to update my mum on all of this as she also has underactive thyroid and is definitely underprescribed so you have helped 2 for the price of 1!

SeasideSusie profile image
SeasideSusieRemembering in reply to Janm51

Janm51 Hang fire on the iron supplement for now, wait and see what your ferritin level is first. You may not need it (doubtful) but if your level is not dire then just eating iron rich foods may be enough (I eat liver regularly and it has raised my ferritin level) or you might need only a low dose supplement.

Come back with any new test results for members to comment.

puncturedbicycle profile image
puncturedbicycle in reply to Janm51

The good news is that a levo increase was the right way to go, the bad news is that 25mcg is unlikely to be enough. Ideally as SS says you need to know what your t3 is. Your next test (and make sure they don't allow you to languish for months before retesting) should show t3 and t4 high in range (upper quarter ideally) and tsh low, ideally under 1. Not everyone needs tsh under 1 to feel good but you should be allowed to be on enough meds for long enough to know what dose is right for you.

If your t3 is low (which I'm guessing will be the case as you're on far too little meds) it would benefit you to add a little, as it looks unlikely that this gp will give you enough levo to make you well.

May I ask how long your tsh has been allowed to remain so high? Have they done your antibodies?

You don't appear to be backing up your levo (if you can't convert your t4 may look very good but when you look at t3 it will be very low), it just seems either that you're not absorbing the levo or maybe you're just one of those individuals who needs to take more.

Any chance there is some gut problem (coeliac etc) that is impeding absorption?

As SS says, your b12 is far too low. You might want to supplement b12 and folate. Are you supplementing d? It is quite good but a tiny bit more won't hurt going into winter.

Janm51 profile image
Janm51 in reply to puncturedbicycle

Thanks puncturedbicycle. My last test was 8 months ago (and I had to go to doctors and request this recent one) and I don't know what my TSH was then as only realised that I could ask for results and 'try to help myself' since a friend recommended this forum (have had underactive thyroid for over 20 years, never felt well but thought that was 'my lot' and accepted what doctor told me/prescribed). However, I imagine it was high as my dosage was increased from 125 to 150 after that test.

puncturedbicycle profile image
puncturedbicycle in reply to Janm51

Good to know you're on the road to good health now. Keep on top of it. Get your test scheduled 6wks after starting the higher dose and if your tsh is still high ask for more. My concern is that the gp should really have raised it to 175 (maybe gradually, or alternating) to see how you do. It doesn't bode well.

Think about gathering info here (someone, Seaside Susie? has posted the guidelines on restoring health w levo, or that's how I remember it) and showing to your gp.

On treatment your tsh should be close to the bottom of the range, and I'm not making that up or getting it from t'internet, that's what my gp says.

Gambit62 profile image
Gambit62 in reply to puncturedbicycle

please see response below re B12 levels - sorry mentioning functionality doesn't seem to be working for me at the moment

Gambit62 profile image
Gambit62 in reply to SeasideSusie

please see my response below re PAS and levels of 1000

Janm51 profile image
Janm51

Thank you - I really appreciate your guidance.

Gambit62 profile image
Gambit62

B12 serum is not a good guide as to what is happening with your B12 levels, what counts, at the level quoted above, is whether you are symptomatic.

It is not the case that the PAS recommends that you have levels of 1000. It is the case that members who have a B12 deficiency and are being treated for B12 deficiency with B12 injections report that they need levels that tend to average at 1000 to feel at their best. This is well above the range where the majority of people will be okay and probably stems from the high prevalence of an auto-immune reaction to high levels of B12 in serum that shuts down availablity at the cell level. It's a bit like going for treating solve a drought by building a dam. It gives you a good reservoir but nothing down stream then gets any water unless the levels are so high that stuff starts trickling over the top of the dam... and in this case your cells are what counts and the cells are downstream - this is known as a functional B12 deficiency. One study in Denmark showed that about 30% of those being treated for B12 deficiency had this reaction.

You should be aware that high level sublinguals could raise your B12 levels so you have this response and will ghen need to keep your levels of B12 very high. 1000 may not be adequate. It certainly isn't for me - my levels are off the scale all the time.

Please, if you can, speak to your GP about whether you have a B12 deficiency before you supplement. There are two tests that can help clarify, at the level quoted, whether there is an underlying B12 deficiency - these are MMA and homocysteine levels - not common tests and quite expensive - that look at waste products that will build up if you are B12 deficient - but these are only going to be effective tests if you haven't supplemented. You can also be tested for the most common absorption problems - that will lead to a B12 deficiency - namely PA but the tests are only significant if they come back showing that you do have IFA - and 50% of the time they don't pick it up. h.pylori infection is another possible cause, along with gastric band surgery (affecting the ileum where B12 absorption takes place), and a whole raft of others.

There is a significant overlap between symptoms of B12 and symptoms of thyroid which will make using symptoms difficult. There is also significant overlap with other conditions.

pernicious-anaemia-society....

and this from the pinned posts on the PAS forum

b12researchgroup.wordpress....

Janm51 profile image
Janm51 in reply to Gambit62

Thank you - that is really interesting and I will definitely try and find out if I have a B12 deficiency.

puncturedbicycle profile image
puncturedbicycle in reply to Gambit62

Thank you for that explanation Gambit62, that explains why taking high doses of oral b12 never did much for me except raise my blood levels. I had always suspected an absorption issue as the moment I stopped supplementing my levels fell like a stone, so I ended up taking up to 7000 units a day. I did some research on b12d.org and decided to try self-injecting and have never looked back. I had a handful of low-level symptoms (sore/numb feet, tinnitus etc) that never responded to oral supplements but improved or went away after injections.

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