Levo

[jwoodward5]

Can anyone advise is it safe to just stop taking levo? If yoi think not helping ? If only on 75

[SeasideSusie Remembering]

I've just read your other post.

You need to get your daughter's vitamins and minerals tested. If they're not optimal thyroid hormone can't work.

She needs

Vit D

B12

Folate

Ferritin

If a person is hypothyroid and not making thyroid hormone themselves, it has to be given as thyroid hormone replacement of some kind. We cannot function without thyroid hormone.

[greygoose]

Just seen that you posted her blood test results on your last thread. But, as you didn't click on any of the reply buttons, nobody saw them to comment on them.

In dec 17 after 50 mg levothyroxine tsh was 1.7. Free t3 5.8 and free t4 15

So, unfortunately, you didn't post the ranges. Results without ranges are meaningless.

You then said : the second she dis take levo at 8 am and test done around 11.30 ish

It was a mistake to take the levo in the morning, because it's given her a false high FT4. And, having the test late morning means that her TSH wasn't as high as it could have been. But, even so, her TSH is still a bit too high. She could do with another increase in dose.

But, compare them with her first blood test :

So her bloods in aug 17 were tsh 7.05. Free t4 15 ftee t3 not tested

The TSH has gone down. Her FT4 is the same, but probably her FT3, had it been tested, would have been lower. So, it's not that the levo isn't working, it's just that she isn't taking enough. What time of day was the August test done?

Did you find out if she'd been tested for Hashi's, vit D, vit B12, folate and ferritin?

If her antibodies are high, that will make her feel bad. And, if her vitamins or minerals are low, they will make her feel very bad. It isn't just about the levo. But, if she stops the levo, she's going to go rapidly down hill.

[jwoodward5 in reply to greygoose]

Ok what dosage of levo would be optimal and what is optimal blood tesults? Is there a test to see if body is not converting t4 to t3? Thanks

[greygoose in reply to jwoodward5]

I can't tell you what dose or blood level is optimal. She has to find that for herself by trial and error. Optimal is how you feel, it's not about numbers. She will know her optimal dose when she gets there, and blood tests are just a guide.

These things take time - for some people it takes years. But, that's not a reason to give up, because without thyroid hormone, you die. One just has to learn patience. I know that's hard for a 15 year old who feels ill, but it's the only way. There are no short cuts, I'm afraid. You can just go to the optimal dose, with hormones - any hormone - you always have to start low and work up slowly.

To find out how well she is converting, you need to test FT4 and FT3 at the same time and compare them. She did both of those in December. I can't say anything for certain without the ranges - please add the ranges - but, so far, it looks as if she's converting well.

Has she been ill for a long time? Or did it just come on her suddenly?

[jwoodward5 in reply to greygoose]

Shes been ill for a year and half at least only diagnosed oct 17 . I only have 2 ranges

Tsh 0.35-5.5. Hers 1.7

Ft4 9-23 hers 15

Somome at thuroid uk said her ft4 should have gone up on levo but its stayed same?

[greygoose in reply to jwoodward5]

She was started on 50 mcg in August, yes? And increased to 75 mcg in December, right? But her FT4 didn't rise. Well, that's nothing to worry about at the moment, because she's only just started. On 75 mcg it probably will have risen.

50 mcg is just a starter dose, we can't expect miracles on a starter dose. The FT4 didn't rise, but the TSH reduced, so the levo is working.

When is she due her next test? Her doctor should be testing her six weeks after an increase in dose. He's leaving her too long between tests and increases. So, it's no wonder she's feeling the levo isn't working.

Can you try and get hold of that FT3 range, please. It is very important. Oh, and this is ThyroidUK.

[jwoodward5 in reply to greygoose]

Yes the woman was on websiite contact details who said bloods look wrong? Endo increased dose then said come back in 4 months ! But they havent even made us annapointment! And now none till june he did say get bloods then hed look at dosage

[greygoose in reply to jwoodward5]

That often happens, I'm afraid. You need to make sure of the appointment yourself, and not wait for them to get their youknowwhat in gear. And, four months is much too long. It should be six weeks.

[jwoodward5 in reply to greygoose]

I asked the endo to increaae jer dose and hes said we be better off being referrd to paeds doctor the only same one who refused us any meds and was so nasty i just cant beleive it they just dont care !

[greygoose in reply to jwoodward5]

No, they really don't care. Did you tell the endo that you didn't want to see that doctor?

[jwoodward5 in reply to greygoose]

Yes ive messaged them back but not in now till after easter feel in worse despair now

[greygoose in reply to jwoodward5]

I'm so sorry you're feeling like that. There is help, it's just difficult to find. And, of course, it's worse as she's a child because you can't take control and self-treat her. But, getting private tests done is a good start.

Personal question, perhaps, but does your husband ever go with you when you take her to the doctor's? You might find attitudes change if there's a man in the room. Sexist, I know, but that's the way it is.

[jwoodward5 in reply to greygoose]

No he never came to apointments . Ive found she had thyroid peroxidase antibodies test and result said under 28 again no range on sheet do u know if this ok

[greygoose in reply to jwoodward5]

'Under' would probably mean it's negative. But, one negative result doesn't no prove she doesn't have Hashi's. Some people never develop high antibodies.

Try taking your husband next time you take her to the doctor's, get him to ask questions - like why she can't have an increase in dose. You might just get more help that way.

[jwoodward5 in reply to greygoose]

I will .have u got your medication to optimal level?

[greygoose in reply to jwoodward5]

I think, for me, it's as good as it's going to get. But, I'm 73, and was untreated hypo for nearly 50 years, so I'm not a typical case.

[jwoodward5 in reply to greygoose]

Is treatment for hashis different?

[greygoose in reply to jwoodward5]

No, there is no cure for Hashi's, and the doctor will just treat the hormonal deficiency. But, there are things you can do yourself to try and lower antibodies, such as go 100% gluten-free, and take selenium. And, the TSH should be kept suppressed, to even out the Hashi's swings, but doctors don't like doing that.

[jwoodward5 in reply to greygoose]

Ok lets hope she not got that

[SeasideSusie Remembering in reply to jwoodward5]

jwoodward5

In dec 17 after 50 mg levothyroxine tsh was 1.7. Free t3 5.8 and free t4 15

As Marz has said, reference ranges are needed for full interpretation.

However, TSH would need to be a little lower to know for certain how well she is converting but going by the reference range we generally see on here for FT3 then I imagine hers is quite high in range indicating good conversion. The FT4:FT3 ratio gives an indication (as long as TSH is around 1) and good conversion takes place when that ratio is 4:1 or less. 15/5.8 = 2.58 : 1 so based on the information we have her conversion appears to be good.

[jwoodward5 in reply to greygoose]

What is the test for hashis called please ?

[greygoose in reply to jwoodward5]

Thyroid Peroxidase antibodies - or TPOab.

[jwoodward5 in reply to greygoose]

Thanks i will check blood tests later if she getting bloods i need to get all of them done at once so need to get a list

[greygoose in reply to jwoodward5]

Well, it's rather doubtful you'll get them all on the NHS, but it is possible to get private tests, if you can afford them. What you need are :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Details of private tests here :

thyroiduk.org/#

[jwoodward5 in reply to greygoose]

Which ones wont nhs do

[jwoodward5 in reply to jwoodward5]

Also what is reverse t3 test for ?

[SeasideSusie Remembering in reply to jwoodward5]

To see if the T4 (Levo) is being converted to reverse T3 rather than Free T3. With such a high FT3 (assuming it is as we have no range) and a less than mid-range FT4 of 15 (9-23) then she is not making reverse T3. Indication of reverse T3 would generally be high FT4 and low FT3.

[jwoodward5 in reply to SeasideSusie]

Thanks

[greygoose in reply to jwoodward5]

Good question! It's a bit of a red herring, actually. They say it's to see how well you convert, but you don't need this expensive test to see how well you convert, you can tell from comparing the FT4 and the FT3.

And it's not reliable for that purpose because high rT3 can be caused by lots of other things, like low ferritin, high cortisol, infections and starvation diets. So, it just tells you there's there's a problem somewhere, but doesn't tell you where it is. I shouldn't bother with that, if I were you.

[jwoodward5 in reply to greygoose]

Ok i see so in summary i should get tashi test done if not already plus usual ft3 ft4 tsh plus vitamin tests what about d102? U think from results and fact she no better needs higher dosage of levo. Would t3 be more beneficial if they would prescribe it? Do i ask for 100 mg or 125 mg from endo?

[greygoose in reply to jwoodward5]

Sorry, only just seen this.

Yes, you need all those tests done, but the DIO2 test is separate - I don't even know where you get that done - and very expensive. But, as far as we can tell without ranges, it's not applicable, because her FT3 appears to be high. She is converting.

So, for that reason, T3 probably wouldn't be any more beneficial than an increase in levo. And I doubt very much you'd ever get it prescribed.

Increases should be maximum 25 mcg every six weeks.

[jwoodward5 in reply to greygoose]

Ok thanks

[greygoose in reply to jwoodward5]

You're welcome.

[jwoodward5 in reply to greygoose]

So the endo has agreed to increase her dose to 100 mg with a view to us getting bloods done asap how long will it take for the new dose to kick in see if its working and when best to get bloods done to see how new dose effecting her

[greygoose in reply to jwoodward5]

She might start to feel a bit better in a week's time. But it will take six weeks for it to fully kick in, so that's when you should have labs done.

Don't be surprised if she starts to feel better, and then feels worse again. This doesn't mean that the levo isn't working, just that she needs yet another increase in dose. This is something doctors don't understand, but that's how it works.

[jwoodward5 in reply to greygoose]

Ok thanlyou

[jwoodward5 in reply to jwoodward5]

So its been nearly 2 weeks since my daughters increase to 100 mg of levo ahe is even more tired shes supposed to be in school doing revision for exams but shes totally wiped out dont know how im going to get. Her to schoool next week . Does this sound like levo not helping? Getting bloods next week as need to know whats going on but shes not coping at all

[cjrsquared]

It could be incredibly dangerous in the longer term to stop your daughter’s levothyroxine. Sadly the thyroid doesn’t repair itself and is likely to produce less hormone and eventually she will be reliant completely on thyroid hormone replacement. It isn’t clear if your daughter has hashimoto’s disease from your posts but this is the most common cause of hypothyroidism in Europe and is an autoimmune disease.

The symptoms of hypothyroidism include weight gain, low mood, sore joints and in the longer term if untreated long term damage to the heart bones, severe mental disturbance and in extreme cases coma. Undertreatment also gives some of the symptoms of hypothyroidism, therefore I agree with greegoose that your daughter is still not optimally treated if she still has symptoms. Adolescence is a time of great change with hormones fluctuating plus physical growth, this plus probably an autoimmune disease attacking her thyroid will cause her blood levels to be very variable. She will need frequent blood tests and dose changes in the next couple of years. Has your daughter been referred to a paediatric endocrinologist? Even though she is 15 it would be preferable to see a paediatric specialist rather than an adult generalist. Good luck.

[jwoodward5 in reply to cjrsquared]

We did originally see a paeds endo but she really nasty said no point in treating her and basicaly said to me she bringing on symptons herself just because shes hot and usually cold with under active t and suggested counciling we were outraged !! This is someone who is trained in child health indont think so so we fought to see an adult consultant

[cjrsquared in reply to jwoodward5]

Sorry you had such an awful experience, wish I could help more. Hopefully someone else can make further suggestions. Wishing you all the best.

[shaws Administrator]

Once we are diagnosed with hypothyroidism we do not pay for any other prescription medications for any other conditions as hypothyroid can be fatal if untreated.

I quite understand why someone doesn't want to take it any more and many people may feel worse initially. Also levothyroxine may not suit every single person - even if doctors believe that's not the case.

If we have never heard of hypothyroidism before, or were unaware of what the symptoms are, it is all so strange.

Thyroid hormones are required to run our whole metabolism, i.e. energy in our body - and brain and heart need the most hormones. We have millions of receptor cells in our body.

This is the procedure for blood tests - they have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep the TSH at its highest and may prevent doctor not increasing dose as they seem to only look at the TSH.

We take levothyroxine either when we get up with one full glass of water, or at bedtime. If bedtime dose is selected the stomach has to be empty and you have last eaten about 2.5 hours previously. You miss this dose and take after blood test and night dose as usual.

We have a blood test every six weeks initially until the TSH is 1 or lower and we feel much better with relief of symptoms.

Doctors aren't the ones to ask question usually as they don't seem to be trained in assisting patients nor do they know any symptoms. Sometimes they give another prescription for a symptom rather than makiing sure the patient is on an optimum of hormones.

thyroiduk.org.uk/tuk/about_...

We have to read, learn and ask questions. Always get a print-out of results and make sure the ranges are given as labs differ and so do the ranges and it makes it easier to comment.

By the time we are eventually diagnosed we can feel very unwell indeed and then when given levothyroxine wonder why we aren't feeling much better. Unfortunately it is not as easy as taking paracetamol for a headache, it is lack of hormones which have gradually been decreasing for years sometimes and our body cannot function until we gradually reach an optimum and optimum means we feel well and no symptoms.

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[Angelic69]

If you are going to do this go very slowly try missing a dose every other day and check for symptoms associated with hypo. If you have symptoms like constipation you could try to include more fibre to your diet or take some acidophilus which you can buy from Holland and Barrett or other health food stores but be warned its not cheap. For hair lose you could try viviscal which helps with normal hair growth and loss. Unfortunately the only solution which i can find for the feeling cold is whisky which tastes disgusting but really dose warm you up. For lost energy you could try one of these at a time to check whether they are a suitable replacement from T4. B complete, high quality iron preferably as a solution rather than tablet, ginseng, ashwagandha and try to reduce stress, excessive exercise and make time to recover. If ok and the holistic alternatives provide relief from unwanted hypo symptoms you could try skipping two days, again check for symptoms and address them before reducing T4 further. Hope this is helpful and very good luck. Everyone's thyroid journey is unique so listen to your body.

[greygoose in reply to Angelic69]

This is a very irresponsible response! You cannot replace thyroid hormones with acidophilus and whiskey - especially not a 15 year old girl! She is hypo, she needs thyroid hormone replacement. The symptoms are due to low thyroid hormones, without which you cannot live. I think you should be more careful about the advise you give!

[Angelic69 in reply to greygoose]

If you look on the information submitted there is no indication on age if you want to knock me down please be original and stop using children or the word child to abuse someone. I have given only advice which i myself have followed and which i stand by the safest way. If you look at the original question it states is it safe that method, for me to skip one dose is not life threatening as most thyroid medications last for at least 24 hrs and some much longer. I was not suggesting or did i even state that these were a substitute for thyroid hormone i stated that they would reduce the side effects of being hypothyroid if you would like to read it again you may see more clearly.

[Marz in reply to Angelic69]

Reading the previous post of jwoodward5 you will read that she mentions her daughter is 15

[jwoodward5 in reply to Angelic69]

Thanks

[Angelic69 in reply to jwoodward5]

Children are not advised to consume alcohol.