Thyroid UK

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Just looking for sympathy

Sorry to post again - and thank you to everyone for all the support.

Just struggling to get through this first 6 weeks. My 18 year old daughter has been on 75mg for 2 weeks.... I know it’s going to be months but just wondered whether there might be any light in the near future?

She’s truggling with any motivation for school (final year) and completely on her knees if she does anything social (which she obviously tries to do because she’s 18 and doesn’t want to be a complete bore). Can’t get up this morning after going out for an hour and a half last night - she’s starting to sound like she can’t see the point in life - there is no enjoyment in it for her.

She doesn’t want to eat either - so improving nutrition is proving tricky

Tried calling doctors but they aren’t interested.

Just looking for some reassurance.

13 Replies

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Hi Struggling Mum. That’s a tough one, being 18 and having to deal with a serious chronic illness. Hard for you too to see what your daughter’s going through. Without knowing you or your situation it’s hard to know what to suggest. If it were me, I’d be looking for an age-relevant support group for your daughter. Yes, absolutely it is possible to feel well again and manage Hypothyroidism, but getting there may take a while. It’s a huge life change - having to acknowledge and manage a chronic illness. Just when you want to be revelling in new adulthood. You both need support at this time.

Thank you so much - she also has dyslexia so not keen on research about her condition either - hence it is me on the forum!

Just having some understanding from the lovely people on her gives me a bit more confidence. Its is truly heartbreaking to watch how much she is struggling and I really appreciate the huge efforts she is making just to complete school work (albeit last minute with a lot of redbull at the moment - not ideal I know, but I am just going with it!)

Sending hugs thyroid disorders are a bitch

Hi, I just had to reply because I was diagnosed at 21 but had symptoms since mid teens, so can completely sympathise. Things will improve and it may be that your daughter will need a dose increase eventually, but it takes a frustratingly long time for things to feel different. I also felt much better once I started a vitamin D supplement.

From a social life point of view, it's so so hard at that age. Just to offer a positive view, I had to miss lots of social things and was always the first one to go home if I did go out, but it hasn't affected me in the long term and I have lots of lovely friendships today. I really hope things get better for you and your daughter x

Oh I should also add that I think it took about 6 weeks before things started to change for me. Also, try not to stress too much at the moment about what she's eating. When things are so acute like they are for your daughter at the moment, she won't be thinking clearly (although she may not realise until she starts to feel better). So if she is eating rubbish and that's all she will have, I'd say just go with it for a bit. You can worry about that side of things later once the levo starts to work. Obviously in an ideal world she would be eating healthily, but it's hard enough to persuade a teenager to eat properly at the best of times, let alone when they are unwell. I reckon that's a battle you could deal with at a later date x

Oh thank you - I am going with eating whatever for now but hope to see a nutritionist (who I just found out also has hashimoto's so will understand) after Christmas.

Gives me hope that she will improve, just such a struggle for her at the moment.

Just one more thing to mention is that most of us on this forum are here because the standard NHS treatment didn't work for us. However, there are many many more people who, once they are on the correct dose of thyroxine, are fine and carry on quite happily without needing any further help. It is quite unlikely to find any of those people on forums.

It can sometimes seem a bit daunting reading about those of us who need different medication, supplements, diets, etc., but there is a chance that once your daughter is on a dose of thyroxine that works for her she will be fine.

I think it is important to know as much as you can about the condition, and to be prepared to look into other things if it doesn't work too, but don't worry just yet as it's early days.

I am very sorry for your daughter and when we're young we don't expect to develop a disease which, if we don't have sufficient thyroid hormones, we cannot and do not feel well at all. It can take months to recover - some years if they don't have a knowledgeable doctor.

On this forum, we have had to find our way through a maze as the medical professionals seem to know nothing about the clinical symptoms we can develop and which thyroid hormones can alleviate but we need to be on the hormones that suit us, i.e. makes us feel we're improving or look for options.

Usually, we start on 50mcg of levothyroxine which should be increased by 25mcg every six weeks until the TSH is 1 or lower. Free T4 and Free T3 should be towards the upper part of the ranges but most GPs just look at our TSH result and if it somewhere in the range, i.e. up to 5, they tell us our result are 'normal' and don't increase dose and we remain unwell. Unfortunately if we've had a headache in the past, we've taken a pill and it goes away. With levothyroxine which is a synthetic thyroid hormone also called T4 (an inactive hormone) then it has to convert to T3 (liothyronine) and it is T3 which is the Active thyroid hormone which is needed in our millions of T3 receptor cells. It is T3 which enables us to feell well and normal but it has to reach an optimum dose. That means symptoms resolve and we feel well again.

Levothyroxine should be taken on an empty stomach, usually when we get up with full glass of water and wait an hour before eating. Or at bedtime as long as stomach is empty and we've last eaten about 3 hours previously.

Blood tests have to be always at the very earliest possible, fasting (you can drink water) and allow a 24 hour gap from last dose and test and take afterwards. If taking night dose you miss this and take after test and ight dose as usual.

Always get a print-out of the results, with the ranges and post for comments. Ranges are important for members to comment upon them.

GP should test B12, Vit D, iron, ferritin and folate as everything has to be optimum.

I would say that thyroid hormones are the energy for our whole body, from head to toe and we have millions of T3 receptor cells and all need T3. Many are capable of converting levothyroxine to T3 but a number aren't able to effectively.

Before the introduction of thyroid hormone replacements (the first was in 1892) we died due to myxedema coma so we are very fortunate for our modern thyroid hormone replacements and the heart and brain need the most T3.

It surprises me that the medical profession seem to believe that testing TSH and T4 only is sufficient when titrating dose.

There are also alternatives to levothyroxine but not prescribed by the medical profession any more.

Thank you - I am going to push for her to have more blood tests than just the thyroid which is all she has been given at the moment.

This forum has been invaluable in giving me the confidence to know what to ask for. I will be prepared for a fight though!

Very important to get her vitamin levels optimal

Also has she had both TPO and TG thyroid antibodies tested?

Do you know if the cause is autoimmune thyroid disease diagnosed by high thyroid antibodies?

Strictly gluten free diet helps many people. Perhaps tough to consider at her age. But it's a lot easier these days, as so many more people are gluten free

If gluten is causing problems, she may feel much better on strictly gluten free diet

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Hi - thank you. They did test for Coeliac at the same time and luckily that came back negative. I will take her to GP after Christmas to get forms for the other blood tests - especially antibodies for Hashimoto's

You are right - when she saw "gluten free" written down - her immediate response was "I'm not giving up bread, I may as well give up on life!!" So I will leave that for her to decide at some later point if she wants to!!

If your daughter is showing no sign of improving when she gets her next prescription, get her to try a different make of Levo. The ones available in the UK are listed here :

thyroiduk.org/tuk/treatment...

Keep notes of symptoms before each new make is started, and score them out of 10 so you know how bad they are. Do the same before each blood test and dose change too. And keep these symptom lists along with blood test results, so that your daughter has a history she can refer to or show to doctors. (Always use copies for doctors, never lose the originals.) For lists of symptoms :

The "short" list : thyroiduk.org/tuk/about_the...

The long list : hypothyroidmom.com/300-hypo...

Hi, just wanted to let you know you’ll have bucketloads of sympathy on here as well as the great advice you’ve already been given. Hang in there...there IS light at the end of the tunnel! (From a 57 y/o woman currently at the mercy of the system but aiming to get better too!)