Thyroid UK
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Advice

Needing some advice please. It's been suggested by my Functional doctor to start some T3 treatment, but my endo says it carries risks and has left the decision up to me . I am really unsure what to do. Apparently my bloods so far show that my thyroid is struggling but I don't have a thyroid disease as such. Can anybody please give me some advice on what to do? My symptoms are definitely getting worse, I'm wanting to sleep alot and feeling very low (amongst many other things) 😏

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Why did your FD suggest your start on T3, and not the usual levo?

T3 doesn't carry any risks, as long as you don't take too much. Endos are just terrified of T3 because they don't understand it, that's all.

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She said based on my results she thinks I'd benefit from it. Although my endo says I don't have a thyroid disease as such, it's just stuggling? I feel ill though and am spending more time in bed sleeping! 😏

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Well, it's true that your Frees are low and your TSH is too high in that test. Is that the only thyroid test you've had? Or have you had others with similar results?

If your TSH is consistantly over 4, then you do have a thyroid problem - ignore the endo, they know nothing about thyroid. But, it would be far better for you to start on levo - T4 - because you do not show signs of a conversion problem. T3 can always be added in later, if necessary, but it's best to start on levo, only, and see how it goes. Jumping straight in with T3 could be a bit of a shock. I don't think your FD knows much about thyroid, either, so be careful. :)

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Can you recommend anyone to speak to who does know about thyroid? I'm just really concerned that it's been left untreated for so long now and everyone seems to offer slightly different advice. It's so confusing and over whelming 😥 I had some tests back in July and my TSH was 4 then so it is creeping up. My endo has basically said all my tests results are fine and she'll see me again in Feb next year!!! There's no way I can last that long. I've pushed for a scan on my thyroid (which I have on Friday) so hopefully that may show something??

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It might show you have Hashi's, or nodules, but even if it does, I doubt your endo will take any notice.

Did your FD offer to prescribe the T3? If so, tell him you would like some levo, instead.

I'm afraid it is very, very difficult to find a doctor that knows anything about thyroid I don't know any doctors in the UK, because I don't live there, but you could email Louise Roberts for a list of doctors that other thyroid patients have recommended.

louise.roberts@thyroiduk.org.uk

Or, you could buy your own T4/T3 and treat yourself with the help of your FD.

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Yes she just said based on my results that I'd benefit from T3?? I have emailed Louise previously and that's where I got my endos info from who i'm seeing now 🙈

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So, did she say she would prescribe the T3? It really is important to answer questions, so that people can understand the situation. We're not just being nosey. :)

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I've answered it above?? She said based on my results I'd benefit from T3?? Unless i'm missing something off??

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Yes, I know she said that. That's not what I asked. I asked if she was going to prescribe it, or did she suggest you ask your endo to prescribe it - prescribe, not advise. :)

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Sorry, I'm new to all this!! This was her reply to me after she received my results of the blood tests:

'Thanks for the tests - we now have a T3 level and partial thyroid antibodies but TSH is still raised suggesting hypothyroidism.

I would be happy to treat you with a reverse T3 level (unavailable on the NHS) as I know your endocrinologist is unable to prescribe T3 if that is what is needed'

I haven’t seen her since and I have an appointment booked for next Thursday.

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Well, that's as clear as mud! lol But, I think she was proposing to prescribe - unless she wants you to buy it, you really need to clarify that point.

She's right that your endo can no-longer prescribe T3, and I doubt she can, either. But, what she doesn't seem to understand is that your endo won't prescribe anything with those results, because they are in-range.

I don't understand what she means by 'partial antibodies'. You either have antibodies or you don't, but we don't know if you have antibodies because you haven't given the ranges. We cannot comment on any results without ranges.

Nor do I understand why she wants an rT3 result. That is totally irrelevant. And very doubtful you would have raised rT3 with an FT4 that low... I think she's a little confused, and that rather confirms my impression that she doesn't know much about thyroid. Do you have an rT3 result?

Don't get me wrong, I'm not saying you don't need thyroid hormone replacement at all. I think you do. But, I don't think T3 is the right place to start. I think you would be better off on levo, to start with. It will also make your life easier on the NHS, if you're taking levo, rather than T3.

If you decide to go back to her, I think you should start out by asking her why she thinks you should first of all ask if she can prescribe thyroid hormone. Then, ask her why she thinks you should start with T3 and not T4 (levo). When you have the answers to those two questions, you'll be better able to decide where to go from there. But, proceed with caution! Never take anything any doctor says on the subject of thyroid, as being gospel! A lot of them make it up as they go along!!!

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By partial antibodies she means as I only have Peroxidase antibodies checked, not TG too. The results and ranges were posted above in my earlier post. Range: <35 Iu/ml and my results were <10. When you say they're in range, aren't they low as suggested earlier with TSH high? No i haven't had RT3 checked. Thanks for all your help, it's so confusing! Is there anyone who just specialises in thyroid treatment that we can see?

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OK, so your antibodies were below range, so that does not indicate autoimmune thyroiditis. Everybody has some antibodies. Yours are very low, so that's not a problem. It might be a good idea to get the Thyroglobulin antibodies tested, though.

You don't need an rT3 test, it's expensive and pointless at this stage. I was just wondering why she was talking about it.

I only know of two doctors that just specialise in thyroid. One is in Brussels and one is in Paris. They are true hormone specialists, knowing about all the hormones, not just insulin like the majority of endos who specialise in diabetes. When you have been reading on here for a while - which I hope you will - you will realise that we are the Cinderellas of the medical world. Practically no-one wants to know us!

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Have you had thyroid issues too, is that how you're so knowledgable about it? It's awful isn't it..why are we treated this way? 😏

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Yes, I have Hashi's. It took me about 50 years to get diagnosed. I've found that doctors are unbelievably ignorant on the subject, and one rapidly finds that one knows far more than any doctor!

Why? Have a read of the letter this post links to. It explains everything :

healthunlocked.com/thyroidu...😢😢😢

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Shocked and disgusted!! I kind of wish I'd not read that as I too had debilitating anxiety at the start of all this, and depression 🙈 Luckily that seems to have subsided now..

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Yes, it is shocking, but that's the way it is. And that's why we have to learn all we can, and look after ourselves - self-treat, if necessary, but certainly not allow doctors to fob us off, belittle us and make us think we're crazy.

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So based on my results, what do you think I should do next? I have also been told I have leaky gut which I think has contributed to my thyroid issues. Which should I focus on first?

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I think you should focus on both together. If levo is on offer, take it, and at the same time treat your leaky gut. It may turn out, when your gut heals, that you don't need the thyroid hormone replacement, in which case, you just stop it. But, one step at a time, and you need to feel well and think clearly whilst working on your gut.

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That's what I struggle with the most. I have been trying to follow an AIP paleo elimantion diet but things I would normally find easy are now so hard. Would an allergy test be a better option? I'm going to try and get referred to an allergy clinic and get the hydrogen breath test and any bloods I can

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There are lots of people here who know their stuff - so keep on posting. A couple of hours ago I asked for your results with ranges for B12 - Folate - Ferritin - VitD. If levels are low then symptoms can be very similar to being Hypo and make you feel very poorly. Please post the results if you have them so we can move the thread forward and help you ..... :-)

Hope all goes well with the scan ....

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Sorry, I don't have actual figures. I haven't had ferritin checked I don't think. I'll try to attach the results I've had now...

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I can't attach anything to this thread can I? It was the Genova ONE test I had so it doesn't really give figures. By the looks of it i haven’t had ferritin or vit D checked on this 😏

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You could start a new thread with the Genove results and more people will see and be able to advise/support ....

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Can I attach a Screenshot do you know? There's about 12 pages of results and lots of scales and numbers so maybe easier if they could see the actual page?

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Yes I think you can. Just post the ones that have been requested :-)

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I only have B12 and there's a cross in a box by 500mcg? Sorry it's so vague. I have a doctors appt on Friday, shall I ask fir some bloods to be taken? Do i need B12, ferritin, Folate and vit D checking??

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Yes you need them all checking. If you are supplementing B12 then the test result will be skewed so best to save the NHS some money !

Is it 5000 mcg or 500 you are taking of B12 and which brand ? Cyanocobalamin or methyl B12 ... ??

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No i'm not supplementing at the moment. All I take is a multi-vit and eskimo EPA and black cumin seed oil

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.... but above you said you have B12 and there is a cross on the box by 500mcg .... hence my question about 500 or 5000 ....

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On my results it has a box with a scale at the bottom from 100-1000. There was a cross in the box at the 500 mark in my results? Hope that makes sense

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Oh dear Emmie - I am so confused - so now you are talking about a box on a form and not a box of B12 supplements :-) In that case your B12 is mid range and seemingly OK .

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Yes sorry, a box on my results form!!

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I have just looked up the Genova ONE test and seen a sample report on their website.

Does your cross appear in the green part of the scale, the yellow or red part?

To be perfectly honest, that is one of the most complicated tests I have seen, I have no idea what the numbers beneath the coloured boxes are meant to represent. I can understand why a practioner would be needed to interpret that particular test.

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Thank you so much for taking the time to do that. The cross on my report is right in the middle of the yellow area. Yes, they are extremely complicated 😏

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So as it's in the yellow area that's not good, it needs to be in the green area and the best place for B12 is at the top of the range.

For full thyroid tests and essential vitamins and minerals, a Blue Horizon Thyroid plus Eleven or Medichecks Thyroid Check Ultravit are the best and easiest tests, fingerprick or venous blood draw and easy to understand results for £99 or less.

I assume your FD arranged that Genova test at quite considerable cost. Other than thyroid and Vit D, B12, folate and ferritin, what were the other tests for?

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Does the test I've had check for ferritin, Folate etc? I can't see results for those? Yes it was £285 and everytime I see her it's between £300-450!! I only work part time so it's absolutely draining me financially!! I've had a full thyroid screening through the endo and the ONE test through the FD. That's all I've had. I'm due to have a thyroid scan in Friday. So if i get one of the tests you've suggested, who will explain the results to me and help me to move forward??

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Is this the one you had gdx.net/uk/product/one-fmv-...

It doesn't seem to list everything individually but on your results sheets each test should be named.

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Yes this was the one. The results are quite hard to understand 😏

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Do you know if the ultravit test you mentioned would help me to determine of i have pernicous aneamia?

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You need the intrinsic factor test for that I believe (You can ask on the Pernicious Anaemia Society forum for further advice, I don't know much about it) healthunlocked.com/pasoc

We usually send people to that forum when their serum B12 is very low in range. The Ultravit includes Active B12, and the Plus Eleven includes normal B12 (not active)

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Curious? Test results will be skewed if on b 12. ? Any other vitamins do the same thing? I have heard not to take Biotin.

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If taking iron tablets they should be left off for a few days before testing iron - I think 5 days is recommended.

B12 - if supplementing with B12 then to get a base line it needs to be left off for 4-5 months. Testing when supplementing just tells you that you are supplementing, which isn't necessarily a bad thing as it can indicate whether you are taking enough or to little. I supplement with B12 to keep mine at the top of the range, I tend to do a thyroid/vitamin/mineral test bundle occasionally and the B12 result tells me whether I need to keep to the same dose, reduce it or whether I need more.

Biotin - singly or in a B Complex can affect thyroid test results. Best left off for a few days.

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Vital that you get a copy of your results inc ref ranges

Your legally entitled to them

Then we can help you find a way fwd

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I have them, I'll post them now.

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Serum cortisol- 232nmol/L

FreeT4 - 12.2

TSH - 4.2

FreeT3 - 4.1

Peroxidase antibodies - <10

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Need ranges!

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They are just below, a few post down 😊

FT4 (10.0-20.0 pmol/L)

TSH (0.35-5.50 mu/L)

FT3 (3.5-6.5 pmol/L)

Antibodies <35 Iu/ml

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Here's my results:

Serum cortisol- 232nmol/L

FreeT4 - 12.2

TSH - 4.2

FreeT3 - 4.1

Peroxidase antibodies - <10

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In a correctly treated hypothyroid patient

TSH should be 1.0 or below

FreeT4 should be more like 19

FreeT3 should be more like 5.5

Your TSH is too high and freet4 and freet3 too low

What medication are you on

What are your levels of

Ferritin

Folate

B12

Vit d3

All must be at least halfway in their ranges otherwise the conversion of t4 to t3 cannot occur

Have thyroid antibodies been tested

What other illnesses are their in the family

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I'm not on any medication at the moment. My antibodies just said <10?? My mum has thyroid issues. All I know is that I have increased intestinal permeability (either at a stomach or pancreatic level), borderline vit B12, low amino acid levels across the board and low magnesium. I had these done by Genova lab (ONE test) so I don't have the actual figure. What do my thyroid results suggest to you??

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What do my thyroid results suggest to you??

We need the reference ranges to interpret them accurately, but TSH looks as though it could be high in range and generally anything over 3 would suggest thyroid is struggling, FT4 and FT3 look as though they might be low in range.

You have only had TPO antibodies tested. There are also TG antibodies (Thyroglobulin). These should also be tested as you can be negative for TPO but positive for TG and that would indicate autoimmune thyroid disease.

Have you got your vitamin and mineral test results? Saying they're low suggests you need to supplement. Suggestions can be made if we know your levels.

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Ranges are:

FT4 (10.0-20.0 pmol/L)

TSH (0.35-5.50 mu/L)

FT3 (3.5-6.5 pmol/L)

Antibodies <35 Iu/ml

I don't have the exact figures but if you don't mind, I could email you the actual results if that helps? Thanks for replying 😊

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EmmieR I have no idea why your functional doctor has suggested T3. With these results

FreeT4 - 12.2 (10.0-20.0 pmol/L)

TSH - 4.2 (0.35-5.50 mu/L)

FreeT3 - 4.1 (3.5-6.5 pmol/L)

It's Levo you want to start with as Greygoose has suggested. Get all vitamins and minerals at optimal levels so that thyroid hormone can work and then only when TSH is down to about 1 and free Ts higher can you know how well you convert and whether T3 will help.

Start with Levo and see how it goes. There's nothing in your results to suggest T3 is what you need.

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Really?? I really don't know whether to continue seeing her now 😥 she's so expensive too and obviously not giving me great advice

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Unless she is prepared - capable? - or prescribing the thyroid hormone, I would give her a miss, if I were you. She doesn't seem to know very much about thyroid, as I said before.

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Or NDT (which is T4 and T3), which a functional doctor might prefer. Your FT4 is low, not just your FT3 so you don't have a conversion problem. You need levo or NDT.

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Your thyroid tests are indeed low

If b12 is low i would want Intrinsic factor done to rule our pernicous aneamia

I would also be highly suspicous of coeliac or gluten intolerance

If you use any form of aluminium or non stick coated or foilcookware ...get rid

Only ever use cast iron or stainless steel or glass and that includes all manner of gadgets like slow cookers,george forman grills etc they hide aluminium elements in them ...heat it and it causes havoc in the body

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All your resultslook low so if your are nervous about T3 then why not suggest T4? A lot of people do well on T4 but they have no need to post on here. If you look at the Thyroid Uk site who run this forum there is more thyroid info so that might help to put your mind at ease. Remember the treatment isn't a drug but just replacing the hormones you are lacking. If you can get treated it will stop the symptoms getting worse. What does your mum think?

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B12 - Folate - Ferritin - VitD ? Do you have the results with ranges ? Low B12 symptoms can and do overlap with Low thyroid. Have you had an Iron Panel done - perhaps you are anaemic which causes fatigue due to low oxygen ....

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