My 17 year old has hashimotos. He suffers with depression, low mood, no energy, mental health problems. He had a TFT done last week, which of course has bounced back as Normal, no action. He’s on 75mg levo a day, is about 5’9 and around 16 stone in weight. His mental health is and has been bad for a long time, but he has recently really upped his self harming. Surely being optimally medicated would help with his mental health? His V d was a bit low, has been recommended supplements, which I have bought. His test results were:
TSH: 1.88 (0.27-4.5)
T4: 14.4 (11.1-22)
I don’t have the vit D results.
He cut himself really badly last night, even though we lock away knives etc, he was able to buy craft knives directly from Amazon 😡 I have contacted our surgery for the wounds to be looked at, but I really want them to give him more levo- any advice?! He’s not seeing endo again until next month. (Note, his birth sex is female)
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Melodica8
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How long on current dose of 75mg?Any more symptoms of undermedication Joint pain, muscle weakness, hand/finger pain/numbness, constipation?Was T3 not tested?
T3 not tested as results were in range, they don’t routinely do it otherwise. He’s been on 75mg for about a year I think. Pretty sure he has a slow transit still, has been complaining about lower back pain/stiffness
I would definitely look to test FT3 alongside FT4 and TSH for a better picture of your son’s thyroid health. Equally important is to test ferritin, folate, B12 and vit D as these are essential to thyroid health. I would not supplement until you have tested the levels & shared with us. Do ask for copies of blood tests from your GP (which you are legally entitled to). I’m unsure what your GP has prescribed/ dosage of Vitamin D.
Just a word of caution that but we don’t advise multi vitamins on the forum. Far better to test key vitamins and supplement if and when needed.
Regarding self- harming, I would definitely seek specialist support asap , such as Samaritans or NSPCCnspcc.org.uk/keeping-childr...
l have alerted another member who may be able to offer support / links re thyroid issues and transitioning. Cade83
Our trust doesn’t routinely do T3 unless TSH/t4 out of range. I’m not sure what else was tested as I don’t have online access to his results like I do with my own, but I know they did FBC and Vit D, so I can ask for the results to be forwarded to me to see what else they tested. He’s under CAMHs for his mental health, I have contacted them again today. He’s also on 75mg of sertraline, although I’m wondering if this is part of the problem- I’m not sure it’s working for him.
Sorry I’ve only just seen this. It’s very hard when GP’s don’t listen to you and only look at blood test results and not actually how we feel. I just upped my levo from 87.5mcg to 100mcg cause my energy levels have been awful. I didn’t even bother asking my GP I kind of give up on them. I just do my own thing and then get them to check it after 6 weeks.
I take 2000iu of vitamin D as mine is normally on the low end of normal and my folate is on the low side of normal too so I take 400iu of folate a day atm.
At the end of the day your son knows how he feels and he can always try an upped dose and see how he feels.
However if he’s never had folate checked I would check this first cause it could be that. I’ve always wondered whether testosterone has had an effect on me but then I always think surely testosterone would give you more energy.
It’s not nice having bad mental health and I do hope he’s getting help from a gender clinic if he’s registered to one as he should be appointed a therapist as well as a dr. An they should be able to help.
Yes first thing, fasted and no meds for 24 hours. I will hopefully be talking to the GP today so will insist on an increase, and will find out what other bloods were taken- if they won’t agree to testing b12 etc I’ll purchase a private test. No he’s not any any blockers/sex hormones, just socially transitioned atm.
I do hope the GP will increase his dose - if not do get a private blood test."
I have had several stupid comments from one of the GPs n the surgery and I told him - "you are wrong" and he didn't like that very much but the new GP is wonderful and helpful and even increased my T3.
If you wish, click on my name and it will take you to my background before being diagnosed.
As you probably know, testing just TSH & FT4 is inadequate. His TSH is over 1 though and FT4 only 30% of its range which is far too low. You should insist on an increase.
Has he had key vitamins tested and now supplementing? GP might do this, if not then private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
As he has Hashi's has he trialled a strictly gluten free diet? Dairy is another thing that a smaller percentage of people benefit from.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Does the D3 supplement contain K2 to help it go to the bones? What D supplement did you buy? Many people like the Better You range and is good for absorption being a mouth spray.
I have heard about the link with gluten and hashi’s, I’ll look into it. And yes will get a private test kit sorted out in time for his next endo appointment if the gp’s won’t do it. I’m not sure what else they checked, I will phone tomorrow to find out. He always has the same levo script (although it is TEVA 😩) I honestly can’t remember which but d supplement I got, I’ll have a look later- it was for the dose the gp’s suggested.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your son’s thyroid health:
I’d definitely phone the GP and ask for a print out of any tests completed.
I hope you have success with a CAMHS appointment; I know the service is currently overstretched.
It may be worth asking to trial a different antidepressant, as increased anxiety and low mood are conversely associated with some types.
As your son’s FT4 is low in the range, it is worth pushing for an increase in Levothyroxine. However, I think I would want to know FT3 first and do this at a different time to changing the anti depressant, so you know what is having a beneficial effect. It may then be worth asking for a 25mcg increase as a trial; perhaps halving this initially and adding 12.5mcg until tolerated.
I hope that you manage to secure the appointments you need. Do keep posting if you need further advice or support 🦋
A private test is definitely worth doing prior to an Endo appointment; post results on the forum in a new post, then ask for advice re questions to ask endo.
yup I didn’t get on with TEVA at all, but that’s what’s he’s always been on. The GP said as TSH is middle of range he doesn’t want to push it up too much 🤦🏻♀️ but has agreed to do every other day at 100mg?! It was a very brief conversation and stressful, he just popped in to check my sons wounds on his arms. Which needed sutures at a&e. He is chunky but tbh he has a large frame, always has, so even without the extra weight would probably still be around 14-15 stone. We’ve got endo appointment next month too.
I am really sorry that your son is having a health issue when he's so young.
I am one person who couldn't improve my health at all with levothyroxine (also known as T4). T4 is an inactive hormone and should convert to sufficient T3 but many of us cannot. T3 (liothyronine) is the active thyroid hormone and levothyroxine is inactive. The brain and heart have the most T3 receptorcells.
I am now prescribed T3 alone and I feel well and am fortunate to have no clinical symptoms.
I also have other autoimmune conditions that are under control - more or less.
I am not medically qualified but you can read my profile if you click on my name.
thank you. Yes I was on NDT for a while, I would have liked to keep taking it if it wasn’t so expensive. We have endo appointment next month so hopefully we can get somewhere…. Not holding my breath mind!
Hi Melodica, I'm sorry your son is suffering at such a young age. I would reiterate the admin's recommendations to test B12, folate, and of course iron and vit D. I noticed you mentioned in an older post that your uncle/grandma both has MS. Normally MS does not run in families, but pernicious anemia (PA) does. MS is sometimes misdiagnosed as PA : b12deficiency.info/misdiagn...
Pernicious anemia is a disease in which an autoimmune attack causes B12 malabsorption. And having 1 autoimmune disease like Hashi's makes it more likely that you collect other autoimmune diseases.
The symptoms of B12 deficiency (B12D) overlap with MS because it's caused by the same underlying process - destruction of myelin, which insulates nerves and allows for fast electrical conduction. B12 is needed to build/repair this myelin. When B12D progresses, the myelin degrades and cannot be repaired, leading to nerve issues such as pins n needles, bugs crawling sensations, balance problems, vision issues, but also mental issues and a whole host of other issues.
PA will usually and eventually result in low B12 levels, or you will see it falling over time. In some cases, taking B12 supplements will raise serum B12 levels but not alleviate symptoms. Therefore it's important to stay away from anything containing B12 prior to testing, including B complex, multivitamins, and energy drinks.
Here are 2 lists with symptoms of PA/B12 deficiency. It would also be useful to see if you yourself have any of these symptoms, since PA runs in families. [Edited to add: Regarding your father, you mention in your previous post that he's having cognitive issues and on injections - he may just need them more frequently! Those levels are way too low for someone on injections.]
There are various tests to diagnose PA/B12D but the tests can be fallible, so symptoms are equally important. b12deficiency.info/testing/ . A full panel will include serum B12, active B12, homocysteine, and MMA. Then there are 2 antibodies that can be tested: intrinsic factor antibody (IFAB) and gastric parietal cell antibody (GPCAB).
Treatment consist of regular injections of B12, which bypasses the faulty absorption issue. Tablets don't really work for most people, even if they raise blood levels.
There are also congenital /genetic causes of B12D, though those are usually found in childhood (but not always!), as well as a whole host of other issues including veganism and parasite infection b12deficiency.info/whos-at-...
Perhaps also important to mention, nitrous oxide inactivates B12 but does not affect blood levels - it will look like the person has adequate B12 levels but they will be functionally deficient. So in case your son is using 'whippets' , and/or has frequently had nitrous oxide / laughing gas at the dentist, it's important to diagnose and treat the functional B12 deficiency asap, otherwise there can be nerve damage and all the other symptoms of B12D including neurological ones. There are many papers on this, here is just one ncbi.nlm.nih.gov/pmc/articl... B12D due to nitrous oxide use can coexist with PA, of course.
If any of this rings a bell (or for help with your father's injections!), then you are welcome to join us on the PA Society forum here on HU: healthunlocked.com/pasoc or of course write back here.
wow, thank you so much, that really is an interesting possibility and so much of the symptoms ring true for my dad, my eldest and myself. What specialist would deal with this is we were to pursue it privately?
Often it will be a neurologist, hematologist, or gastroenterologist. The problem with PA is that it falls into all 3 categories, and not all doctors understand it well.
I think you are in the UK? I think you'll have more luck asking on HU's PAS forum, the last link I gave. It's mostly UK people and they will give you better advice on which route is best. Otherwise I would probably go the neurology route [not that I or any of my relatives have any success with them either, but that's outside the UK where PA is less prevalent].
I'd also like to mention the following, in case you and your dad were not aware - for someone already on injections, once they've been diagnosed and started treatment, it is very easy to continue with self injections (SI). Many of us need monthly, weekly, daily, or even twice daily injections just to keep symptoms at bay, and often our doctors are not willing to prescribe B12 at that frequency. They think 3 monthly should be more than enough but for some it's not. Many of us buy them online from reputable German pharmacies, where it is sold over-the-counter without a prescription. Some get lucky and get a prescription from their specialist.
My heart goes out to you and your son. I was an extremely depressed and anxious teenager, it was my thyroid all along - I wouldn’t mind betting that this is his thyroid causing such lowness. It is absolutely imperative that you get the FT3 levels tested, his symptoms definitely suggest they’d likely be low as he sounds hypothyroid.
Please don’t let the GPs dissuade you from persisting, you need a proper, full thyroid panel that includes FT3. I am 31 now and only just finding wellness, your son has so much life ahead of him to enjoy. Good luck ❤️ I have a lot of hope for you both xx
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