She was diagnosed in April 2019 and is on block & replace treatment (Carbimazole & Levothryoxine.) She has really struggled with tiredness, other symptoms and side effects of meds seem to have reduced but still finding full days at school difficult.
Is it usual even once blood test results show an acceptable balance to still feel fatigued? She has recently started taking vitamin D suppliment as as told this could help with energy levels.
Would be great to get any advice or to hear from any other parents.
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Mother3535
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Do you check your daughter’s blood test results yourself or just rely on what your doctor tells you? It may be that her T4 and T3 levels are too low but to be fair it is often difficult to get it right and mine went up and down in rapid succession. Always ask for results and learn as much as you can yourself. She may also be low in iron. Has this been checked? Also B12 and folate? Ask for a printout of her latest blood tests and post the full results, including the reference ranges. Members can then advise.
In this post with your daughter's latest results you've replied to yourself, nobody else.
People are often reluctant to answer posts that are a few weeks old. You would be better to create a new thread, copy in your daughter's latest results, give people a link to this thread for the history, and ask for feedback on the latest results.
So sorry to read your profile and see that the school are so unhelpful - shocking ...
We often see members here being wrongly diagnosed - so it's important to obtain the test results and ranges which you are legally entitled to have. You can ring the surgery for them and say you will collect them in a few days.
Important to know which anti-bodies were tested. Hashimotos leads to an under-active thyroid but can also be over-active from time to time as the thyroid is attacked. The anti-bodies are TPO & Tg.
Are you able to have Private testing through Thyroid UK ? Testing kits are sent to your home and results by e-mail. Return here with the results if you would like help.
Great - but your GP will not do all the correct tests needed. Their hands are tied. That is why I asked if you could do the much needed tests privately and gave you the link. Have been on this Forum for 8 years so have seen the issues we all experience - known as a brick wall ! You really need copies of results ..
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
As her guardian You are legally entitled to printed copies of your daughters blood test results and ranges.
Important to see exactly what has been tested and equally important what hasn't been tested yet
It's not unknown for the medics to assume high FT4 and FT3 is Graves' disease and don't actually confirm it by testing. High FT4 and FT3 can be due to early stage Hashimoto's.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation your daughter need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's and Graves and TSI or TRab antibodies tested for Graves . Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto's) or Graves' disease
Ask GP to test Ferritin, iron, B12 and folate, plus vitamin D should be tested before supplementing
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative and rarely test FT3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice, with option to pay extra for private blood draw at clinic or private nurse . Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Blue Horizon allow testing of a minor. Not sure about Medichecks
Private testing for suspected Graves - TSI or TRab antibodies
If TPO or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). You can also have mildly raised TPO and TG antibodies due to Graves
Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once . And for Graves TSI or TRab antibodies tested
Thank you so much for all this information, there has been alot of advice since my post... a bit overwhelming with all the scientific terms but am gathering info ready for her next blood test.
We normally go to hospital after school 3.30pm (she has deep veins so nurses/gp's often havd a problem!)
I recently had a bloodtest at my new UK surgery. Horrific bruising and a haematoma. I have recently moved from Greece where my blood was taken at a Haematology Clinic in the next village ( they are everywhere ) Not once did I have a bruise in 15 years. Something is amiss .... It's about time the UK caught up ...
Oh geez Marz, maybe you just got a rookie or a drawer having a bad day. That has happened to me very very rarely. If they ask me very sweetly if I mind having a student draw my blood I freak a little and say, "No, no, no, I'm very sorry, I'm a fainter or I might throw up". I hate to turn down a student, I know it's kind to let them "have a go" but the consequences would be more that it's worth. Fortunately there are many who will offer up an arm.
Thanks for your message, the hospital want to wait until she has done her GCSE'S next year then try coming of the meds to see if they will no longer be needed.
There has been alot of useful tips about blood tests which im hoping to action.
I’m not a parent but I had Graves in 2012, treatment lasted exactly a year and I’ve been in remission since then . I was absolutely exhausted in the beginning. A tiredness like nothing I have ever experienced before so your daughter will be feeling exhausted and could feel tired for ages. She really needs as much rest as she needs. Her school needs to appreciate that she isn’t being awkward or trying to skive off school - she is ill even if she doesn’t look ill.
I felt tired when I was taking carb only - before they added in the levothyroxine. Once that happened I felt ok for a few weeks then I started to get ‘hyper’ symptoms again when my body needed more levo. I though it was becoming hyper again but someone on here said I was probably needing an increase in my levothyroxine and they were right.
First thing me my GP gave me amitriptyline to ‘tide me over’ until I was due to go back to my endo - the endo rolled her eyes laughed when I said I had been taking the amitriptyline and didn’t think it was any good.
The next time I had similar symptoms and the same symptoms happened again, I went back to my GP and this time I was able to persuade her to give me an increase.
I had started keeping a daily diary with quick notes on how I felt - nothing in huge detail but I did it every day. I found that really good because I could check it before I went to see my endo and didn’t just say ‘fine’ when I was asked how I was feeling. It was also good because I could look back and see I was actually making progress even if at times I didn’t feel as if I was.
I also recorded my blood test results with their lab ranges and any other useful information I found either from reading (read as much as you can about Graves) or from this and other sites in my notebook. This site is definitely my best resource.
I ended up doing my own home finger prick blood tests - I could never get vitamin D done - that’s just fashionable said one endo I saw, bring me proof that it works and I’ll do it!!! - next appointment that endo had moved on. I had B12 tested and even though it had only just crawled over the lab baseline it was deemed to be OK and I had never had my T3 tested. So I’d say get your own done, they won’t use the same lab ranges but your position within the range should be similar on both.
Don’t accept it if the doctor, the receptionist or even the practice cleaning lady tells you your daughter’s results are ‘fine’ of ‘good’ or however they want to put it - make sure you get a printed out copy for your own records.
When I started to take carbimazole the pharmacist came out to see me and as well as pointing out the warning signs to look out for that were on the leaflet I got with the carbimazole he said I should take a high dose of vitamin C. Unfortunately I didn’t ask why but I gather vitamin C is good for healing so I took 1000mcg slow release vitamin C with zinc all the time I was taking carbimazole.
As your daughter is so young it might be worth seeing what you can find out about this drug that is being developed - it’s at the trial stage now
It’s a nightmare having Graves but it’s quite possible to get back to doing the sort of things your daughter did before she became ill.
Can’t her school fix her up with some home tuition while she is still feeling tired? Good luck with it all.
Should add that I went totally gluten free a few years ago after I was diagnosed with inflammatory arthritis, another autoimmune condition. My thyroid antibodies and my CRP have both come right down so it might be worth a try your daughter (family?) going completely gluten free. Has to be completely though and I was in remission when I started but a lot of people with thyroid problems have found it helpful.
Thank you for you message, so good to finally get some advice...
my daughter has been on a reduced timetable (was morning's, then 2 full days, increasing next week to 3 full days) school want full time ASAP.
Alot of the physical symptoms of the condition/meds seem to have eased, but she was keeping a 'medical note book' of feeling unwell.... most entries were light headed, nausious, tight chested, palpitations... appear to be more anxiety based: when feeling overwhelmed at school. (She has had 3 ecg's so there is no problem with her heart.)
The reduced timetable has proved to reduce these 'episodes/entries'.. i have some counselling lined up but she needs some emotional support too.
The school have left it up to me/her to keep up with missed work. Not so easy with a 10 & 11 yr old also in the household. 😉
Anxiety is a classical sign when you have an overactive thyroid so it’s not surprising the anxiety declined once your daughter’s school hours were reduced.
Someone at the school needs to start reading up about Graves symptoms and find out how much - and for how long - an overactive thyroid affects your body. It’s not flu your daughter’s got!
It might help to letter daughter see this - health.com/thyroid/celebrit... - when I was first diagnosed and phoned to tell my son over in NZ the first thing he said was ‘Missy Elliot has Graves’. I’m afraid I had to look her up to see who she was.
My symptoms diary came in very useful because as well as being able to see myself improving and being able to tell the doctor how I really felt, I could tie it in with changes in my medicines which was how I managed to persuade my GP to increase my levothyroxine the second time I needed an increase. Your daughter can tie it in to her school schedule.
I’m sure it must be possible to get some sort of support from your local education authority. Just foisting things onto you isn’t fair and it good enough for your daughter or for you. If you don’t get anywhere you could speak to your local MP about it.
I kept being told I would be given radioactive iodine should I relapse and I thought - no I’m not! Once things settled down I was very well on block and replace and I wasn’t keen on not having a thyroid.
I knew I needed not to be stressed - stress isn’t good for us Graves sufferers - so I went to see my GP and asked could I be forced to have RAI etc - answer was no. So that settled that source of stress and seven years later I’m still in remission - fingers crossed.
Best of luck for your daughter. It’s a bit of a slog recovering but she will. My very first post on here was ‘Will I ever feel normal again? ‘ and yes I do, it’s not a quick fix and she’ll have good days and bad days but tell her from me she’ll get there in the end.
You are lucky to have been in remission that long. I have only had one remission and that lasted 4 years I then was ill for 3 years and I am now on my second remission and have no idea how long this one will last but at least I now know what to do to self treat myself because my Doctor refuses to treat me until I get really ill because of NHS guidelines.
My TSH is generally 'good' according to the doctors but I have felt tired for years since being diagnosed as hypothyroid. They put it up and then they put it down (I think taking selenium caused the doctor to lower my T4 dose.) I never feel any difference.
Some complete out of the box thinking, that neither the hospital nor the school seem to have suggested (& your daughter might not like) is that she redoes the year she s in. Might take all the pressures off (and never mind even thnking about GCSEs at this stage).
I have very little experience with Graves (but plenty with Hypo), however I was thinking maybe your daughter could try missing out the Levo and "feel out" the hyperthyroidism. I.e. when she feels anxious, too hyperactive, take some carbimazole. Take as much as makes her feel normal, then, as it wears off, take a little more if the hyper condition returns. I suggest this because if one's status is fluctuating up and down and you are taking "uppers" AND "downers" then you are chasing the problem all over the board and the chances of ever reaching an equilibrium are next to zero. The secret is listening to your body carefully then taking the appropriate amount of medication.
This will necessitate your getting your own blood tests for a while and modifying your doctors advice if his advice isn't working. carbimazole has a short half life, I think as little 5 hours, Levo, on the other hand has a half life of 7 days.
Now, once you have got the rhythm of the Graves you will have to check your T4. If your T4 begins to drop then you will have to introduce a little Levo (pure T4) - but get the hyperthyroidism stabilized first. Be aware if your doc starts diagnosing from TSH alone, if he does that then you will never make it.
(btw, excuse my flippancy, the uppers are the Levo and the downers are the Carbimazole.)
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My 16 year old Daughter
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