Hello everyone! I am a new member, apologies in advance if I do/write something silly. This community was advised to me on FB group for vitamin D wellness. I would appreciate your comments/advice on our situation.
My daughter (now 17 years old) has been very sick for a few years now. Initially, it started as extreme tiredness and migraines. Doctors were telling me it was a "teenage thing". Then it escalated to mental health issues and became bad. Again: “Many teenagers nowadays have mental health issues”. I had a long fight with psychiatrists trying to persuade them to check my daughters D, B12, folate and ferritin levels and then take results seriously.
Currently, my daughter is on B12 supplement (liquid one); we tried injections, but she felt really horrible after the first one. She is on vitamin D protocol as well.
I recently insisted (long fight again with doctors) on full panel thyroid test, and now I got results over the phone. Can you please comment on the result. Doctor told me "it is absolutely fine" but I am not sure... Should I push for further tests and referral to endocrinologist or the results are OK? Can my daughters mental health issues be connected with thyroid?
TSH = 2.21 mU / L (0.35 – 5.00)
Free T4 = 12.1 pmol / L (9.0 – 21.0)
Total T3 = 1.4 nmol / L (no range provided)
Thank you in advance!
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natmcvit
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Oh, they get their revenge in such sneaky, petty ways! They've done a TT3 test, which is useless, rather than the Free T3 which is what is needed. Nobody does the TT3 these days, so they must have conived with the lab to get it done and thought you wouldn't know any better. So, I'm afraid your really not very far advanced.
Her TSH is too high, that's for sure. It says her thyroid is struggling. The top of the range is rediculously high, because you're hypo when your TSH gets to 3. But, even with that high top of the range, NHS doctors will just ignore it and say it has to go over ten before they will diagnose. Unless, of course, she has high antibodies, but they haven't even tested those.
But, her FT4 is only 25.83% through the range. Euthyroid would be about 50%. So, that is very low. And, normally, her TSH should be higher than that with such a low FT4. So, perhaps her FT3 isn't too bad - but that's only guessing. You really need it tested to find out.
So, yes, it is possibly that all her problems are down to low thyroid. And, I think you should push for that missing FT3 test, and also for antibodies - TPOab. And, tell your doctor that he might change his mind about those results being 'just fine' if they were his!
A GP can do it, yes, but might take some persuading because they don't understand the importance of it.
I can't tell you about all the blood tests below, but it's good that she is now taking iron and B12 (she is taking a B complex as well, isn't she?).
What about vit D? I can't see a result for that.
Magnesium 0.87 mmol / L (0.70 - 1.00)
There's really no point in testing for magnesium due to the way the body handles it. The results don't mean much, she could still be deficient. Most people just take magnesium - especially if they also take vit D - and feel better for it. It's water soluble so any excess will be excreted.
Cortisol - 251 nmol / L(240 - 600)
That is very low. What have doctors said about that?
So what I have managed to get for my daughter from her psychiatrist is actually not good, waste of time....
It's a start.
It is not enough to test for TSH alone.
No, it absolutely isn't.
A full thyroid panel should at least include TSH, Total T4, Free T4, Total T3, Free T3, Reverse T3, and thyroid antibodies. Correct?
Not exactly, no. Total T4 and Total T3 don't give you much useful information - especially not TT3. It's the Frees that are important.
Reverse T3 is a waste of time. It will tell you if your rT3 is high, but it won't tell you why. There are many, many causes of high rT3, and only one of them has anything to do with thyroid. It's an expensive test, anyway, so I wouldn't bother with it, if I were you.
Thyroid antibodies are very important, though - both of them: TPO and Tg antibodies.
The aim of modern medicine seems to be to prove everyone is 'crazy' - has mental problems - and to palm them off onto a psychiatrist. Modern medicine has taken a very sad turn for the worse! My daughter went to the doctor last week because she couldn't sleep due to the stress of her job. The first two questions he asked her were: 'have you ever seen a psychiatrist?' and 'do you ever want to self-harm?' I was horrified! Had I been there, he would have got a sharp piece of my mind! Unfortunately, I can't get my daughter to test for thyroid.
She has extreme tiredness so I assume they have checked for diabetes.
Her thyroid blood tests are difficult to interpret because she doesn't have a free T3 result. The TSH is fine, around average for the population but her free T4 is a little low or more precisely is low IF her free T3 is low in its interval. Looking at typical reference intervals on the internet her total T3 does seem near the lower limit.
If both fT3 and fT4 are low normal it can cause quite substantial hypothyroid symptoms and you would not expect TSH to be normal in this case. You can get TSH, fT3, fT4 measured with a finger prick teset for a reasonable price thyroiduk.org/getting-a-dia... . Antibody counts can be useful if thyroid hormone levels are jumping around or if TSH is high but probably not worth bothering with in this case.
"Can my daughters mental health issues be connected with thyroid?" Yes. Hypothyroidism can cause mental health problems including depression which responds poorly to medication. On the other hand depresison can cause hypothyroidism by lowering TSH which leads to low normal fT3 and fT4. A bit of a chicken and egg situation.
I would get TSH, fT3 and fT4 measured. If fT3 and fT4 are both in the lower quartile of their reference intervals hypothyroidism is most likely although doctors fail to acknowledge these cases, they fail to see all three hormones in context.
Extreme tiredness is not by itself enough to diagnose hypothyroidism on the basis of signs and symptoms. Does she have other symptoms?
(I have seen a recommendation (can't find it at the moment) that total T3 is measured instead of free T3 because the free T3 assay is not accurate. This is not my view but might explain why they did total T3).
The reason I suggested this test is that it is cheap and is done by an NHS hospital so a GP will struggle to argue against it. The other tests are just as good but more expensive and GPs may argue that they can't be relied upon because they are private (in general they are accredited labs).
Jimh111's advice below re NHS testing is helpful, I'd say. My GP refuses to look at my private test results. I'm afraid I can't comment on anything else, as I'm new to all this myself.
I pushed for full Iron panel test, and she is currently on Iron supplements as the result came low:
Transferrin - 3.20 g / L (2.00 - 4.00)
Iron - 14 umol / L (10 - 30)
T'ferrin Saturation - 17 % (25 - 50)
She was not tested specifically for diabetes, but she had full blood count test. Does it count?
I am now trying to get my head round the thyroid tests.... So what I have managed to get for my daughter from her psychiatrist is actually not good, waste of time.... So I need to be sure her thyroid gets checked properly. It is not enough to test for TSH alone. A full thyroid panel should at least include TSH, Total T4, Free T4, Total T3, Free T3, Reverse T3, and thyroid antibodies. Correct?
3 years ago my girl was an athlete, playing basketball for local club and for school. Was playing 3 musical instruments, being a typical young girl. 3 years ago she started complaining about headaches and tiredness, I took her to doctors - no proper treatment. A year ago she became so bad that she was sent to psychiatric ward . She is now at home, we are just managing, but she is struggling physically and mentally. I eventually woke up and realised no one really cared about her health and future. I am so angry with myself that I trusted doctors and waited for them to help us. Then she ended up in mental hospital and for many months she was not my child, she belonged to the system, I had very little control over her treatment. I begged for basic tests like B12 and then her low results were ignored. Now when she is at home I am trying to put this puzzle together myself. I learned a lot about B12 and its co-factors, D and co-factors, other vitamins and minerals. Now I came to learn about thyroid. Thank you so much for helping me to understand and create a map for our further journey...
Wow she went downhill so fast. I have most of the same symptoms she has. My life has been a trainwreck. I did figure out I had hypothyroidism recently and that's helped a lot. I've done a lot of research and I have a lot of the symptoms that celiacs have. Celiac disease is very difficult disease to diagnose and it's reported that 95% of celiacs go undiagnosed. Celiac can cause major depression and anxiety so I think its definitely worth the time to research it and maybe get her tested for it. It can deplete your nutrients and neurotransmitters like seretonin.
We completely changed her diet in March , excluded gluten, dairy and sugar. She is saying she feels so much better, especially after she started gluten free eating plan. I was thinking the same - I need to test her, so glad you confirmed it for me. Could you tell which test I should be asking for from GP? I asked for referral to gastroenterologist, GP agreed but the referral was turned down by the specialist as "not enough evidence she needs it". I was furious.
That is great news she is feeling better after gluten free. It can take a long time to fully heal from celiac. It can take years in some cases. I dont know the name of the test for celiac. Someone will know it on here for sure. My doctor screwed up my celiac blood test and never alarmed me that you actually have to be eating gluten before the test. So unfortunately, your daughter will have to eat a lot of gluten for 8 weeks to get conclusive results. I just decided to stay gluten free and forget about the test. I just treat myself as if I have celiac anyway. Gluten is not good for you anyways even if your not celiac.
No the only treatment is to be gluten free. Some celiacs dont get fully better until they stop eating dairy, some have to give up all grains, and nightshades sometimes.
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I saw that she had total t3 tested. I think free t3 is way more important than total t3. I dont think you can reach a good conclusion without knowing free t3. I might be wrong.
I've done thyroid blood tests in the past but the doctor only judged by my TSH. I ended up in the emergency room after a drug overdose and they told me that my tsh was 20 something. I started taking a baby dose of levothyroxine and I felt amazing in about three days. I'm also taking sertraline and I've learned that the levothyroxine makes the sertraline work 1000 times better. Anyways, point being is that i would have benefited dramatically if i had been prescribed levothyroxine earlier in life.Probably about 15 years earlier. I'm 28 now. My doctor should not have just went by tsh. It could have saved me from many years of suffering.
I don’t have any medical knowledge or experience but could I suggest you look up information on POTS - those Listed symptoms are eerily similar to a person experiencing POTS. Just a thought and by no means suggested as ‘the answer’, it could be one of a number of possible explanations. Hope you get some answers soon.
Is your daughter on medication for mental health symptoms? Some of the medication can have side effects. Some medications might affect thyroid function. What about ferritin and iron levels? It's hard to say what's happening with thyroid results as FT3 isn't available. And we need to know if other factors could be affecting thyroid function. It's definitely worth checking out further so pursue it and get proper testing done.
The ADs often make things worse in young people. You might want to read Dr David Healy's blog and also look up Children of the Cure. He is a UK psychiatrist with a deep interest in depression in young people and the effects of medication.. There's a lot of reading on his site
I don't know how seroquel affects thyroid function but read up. Not all side effects are always known and people can react differently. Did you get vitaminD tested? Low iron along with low vitamin D and other nutrient deficiencies may give symptoms of anxiety and depression. It's possible that if deficiencies are corrected, she may not need antipsychotics and thyroid function may well improve. But I'm not a doctor, only an ordinary bod. I have found that side effects of medication and many medicines give symptoms similar to thyroid symptoms and can impact thyroid function and hinder rather than help recovery.
I notice your daughter has allergies. Has she been tested to find out what she is reacting to? What about antibodies tests?
It's possible there are a number of things going on at the same time. Its not apparent to me that this is thyroid related since TSH is normal for someone not on thyroid medication and other factors like medications may be affecting FT4 levels.
It does take 4 to 6 months to begin to feel the benefit of improved nutrient levels so you might have to be patient while vitamin D and iron levels improve. Then you might have to consider medication side effects and retest thyroid function including FT3 next time.
I think I need a good doctor who understands about thyroid, can interpret results and recommend treatment. Our GP is a nice guy but so clueless, god bless him. I feel I am doing his job trying to figure out what's wrong with my daughter. He was very enthusiastic some time ago but now I see he is getting more and more frustrated that she is not getting better and I keep pestering him about further steps. She is a difficult patient who does not want to recover from taking paracetamol - that is all what GPs can advise these days :-(.
I sent request for list of private practitioners, I hope it will help us. Any recommendations for doctors in Scotland will be highly appreciated! I hope it is OK and does not break the rules of the forum.
Im afraid many doctors are woefully ignorant of the diagnosis of hypothyroidism & management including optimal treatment. I was exactly like your daughter.....but my TSH level was considered normal, ft4 low but in range. I couldnt work & was diagnosed with cfs/me. I am not alone with this sadly. In the end developed classic symptoms & signs including a moon shaped face & puffy eyes, very dry skin, hair loss & raised blood pressure, weight gain, hearing loss, blurred vision, extreme fatigue, constipation, poor memory, lack of focus, aches & pains, feeling dizzy or faint, going white/pale., weight gain/bloated ness, food intolerances. Finally my TSH level went over 4.8 & I was formerly diagnosed by my doctor. That level now has to be over 10!!
Getting the best treatment was another long fight. This is why so many of us end up having to develop are own knowledge of this condition. Living with your Thyroid by Barry Durrent Peatfield is a good book. Thyroid UKs website used to have a list of books recommended -sorry not looked recently to see if they still do.
Mental health issues are well documented with untreated hypothyroidism. Commonly seen as depression or paranoia. Its not uncommon for people with untreated hypothyroidism to be offered anti-depressants. They are not the solution. Psychiatrists are meant to screen for hypothyroidism with patients referred to them.....whether they do in practise is another matter. Hypothyroidism is the big mimica and can generate very diverse symptoms.
Your best thing to do is to become knowledgeable on this subject. Keep posting on this website. Ask Thyroid uk for a list of thyroid friendly doctors....but be warned they are bound by the nhs protocol of TSH over 10 or thyroid level ft4 & ft3 below range. Doctors have been known to be in trouble with the GMC for failing to follow the protocol.
Fluoxetine caused terrible night sweats, bouts of never ending yawning, tinnitus and exhaustion for me. It did help my mood for a few months, but the physical side effects that developed soon reduced my mood again.
As mentioned by others total T3 and total T4 are of no use. Also reverse T3 is not useful outside of research establishments, the test is expensive, it takes weeks for the results to come back and even if it is high you can't do much about it (unless it is high because someone is takiing lots of levothyroxine).
The essentials are TSH, fT3 and fT4. You can measure TPO and TBG antibodies but I don't think they help much in this case, I wouldn't argue strongly for or against them.
It's difficult to determine but some of her symptoms may be coming from the medications she's on, they may be necessary but be aware of side effects.
As your daughter's cortisol is a bit low, has she had sodium and potassium levels checked? Her symptoms could be indicative of adrenal insufficiency, if she has any hyperpigmentation, e.g darker skin than usual, darker creases in palm fingers it may indicate Addison's Disease, GPs are not great at detecting that.
After a long battle with doctors and hospitals, my daughter was finally able to get my 19 year old granddaughter to an endocrinologist for a full Thyroid blood Work-up. His diagnosis was Hashimoto’s but no meds because thyroid levels are all normal. She is special needs and has trouble communicating. She knows what she wants to say but it doesn’t come out the way she wants. She is beautiful but broke her nose on purpose a few weeks back they wouldn’t operate because of Covid. Endocrinologist said her recent bad behavior is probably not related to her thyroid issues. So we’re still hoping for answers. If you find help for your daughter (and I hope you do), please let us know. My daughter is on the verge of collapse. God bless.
My apologies I did not reply to your comments for so many days, it has been very hectic and difficult times here with my daughter. Her iron level is extremely low. The latest T'ferritin result came back as 6%, iron 5% ! I spoke to GP - he said he did not have authority to refer her to iron infusion, it has to be a clinician. The clinician - her - psychiatrist - says it is nothing to do with her, it is not mental health issue, so "go to GP". I took her to A&E on Friday - 5 hours wait, talk to doctor who said "oh, it must be because she had her period at the time of the test". I said ok, maybe, but what are you going to do about it - "nothing, we are not going to do anything here in A&E, go to your GP". So I dont know how and where to get iron infusion to up her iron level, to start B12 injections after it. Feeling stuck....
I managed to get appointment with endocrinologist for her, and she is getting Synacthen Test done. This if following her low cortisol level. The appointment is in August.
I got nowhere further with Full THyroid test including Free T3 - they dont do it in the UK for whatever strange reason. So going to do it privately, checked the recommended link for Monitor My Health but not sure if they do FreeT3, looks like it is standard Total T3 test. Or am I wrong? monitormyhealth.org.uk/
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