Hi, I am sorry about this long post, but this is a very complicated and distressing case and I am desperate for any advice to help my 24 year old son, who has been bed ridden for 7 months and has absolutely no quality of life left at all anymore.
During the first part of last year, before he became so chronically ill with fatigue, tinnitus, swollen glands and other recurring symptoms, he travelled to 14 countries, as he was building his career as a freelance filmer after graduating from university. He was a very ambitious, hard working and physically active lad.
Routine blood tests have all come back normal, so he has been diagnosed with ME. However, he is unable to carry out the treatment suggested: graded exercise which he tried at the beginning of his illness and which made him worse; CBT he is unable to do as he cannot hold a conversation for more than a few minutes, as it makes his tinnitus scream and he cannot cope with stimulation of any kind.
I believe that he displays a lot of symptoms of thyroid dysfunction and it runs in our family ( Dad is hypothyroid, Grandfather and Great Grandfather hyperthyroid). His blood tests were however within range (TSH 1.41, free T4 23.3, free T3 4.7). The GP was eventually persuaded to examine his throat and found that he has a swollen thyroid. He sent him for an ultrasound scan, but it has not shown any abnormalities.
I was also concerned that he might have picked up something when travelling to many different countries, including Peru, Australia and Russia. I therefore took him privately for some more blood tests, as GP wouldn't let him have these done. He tested positive for legionella antibodies and was borderline positive for echinococcus parasite. However, GP said that they would be historic infections that would not be contributing to my son's current condition, so did not therefore prescribe any treatment and told him to continue with bed rest for the ME.
In spite of all this bed rest, my son's condition is continuing to deteriorate, so I took him to see a private endocrinologist, who prescribed him with antibiotics to treat any remaining bacteria from the legionella, a one-off medication for the parasite and 25mg levothyroxine because of the swelling, symptoms and the family history. (I think he mentioned that he was treating possible thyroiditis?)
Last week my son started to take the antibiotic and the thyroxine at the same time. For the first few days he suffered terribly with stomach pain, bloating and nausea (side effects of antibiotics?) but this then settled and he has now almost finished the 10 day course. In spite of these stomach issues, although the fatigue and tinnitus were still as bad as ever, he did think that perhaps his tender neck felt slightly better and that he didn't feel quite so ill. However, unfortunately on days 3 and 4 he suddenly developed terrible mood swings that frightened him and as he is so fatigued he said he just hasn't got the energy to deal with them. He spent the entire days either crying or getting into a mad rage (he is usually a very calm and placid person). I emailed the consultant, who suggested that he stop the levothyroxine until he has finished his antibiotics.
He is due to take his last antibiotic tablet tomorrow and he said that his neck is feeling absolutely awful - his thyroid feels like a golf ball in his neck. I asked him if it had got worse than it had been and he replied that everything has got worse.
It is so disappointing that the antibiotics do not seem to have helped him at all (in spite of a very encouraging start.) In fact he is concerned that the antibiotics might have messed his thyroid up even more. He is unsure if to take the levothyroxine again, as he is afraid that he will feel even worse than he already does and get the mood swings again.
I have emailed the consultant and am awaiting a reply, but I wonder if anybody has any ideas or comments about what on earth might be wrong with my son and what I can do to help him. It is devastating to witness his suffering and I feel so helpless.
He has not yet taken the one-off parasite medication due to fear of feeling worse and taking so much medication. He hates putting chemicals into his body and seems to be very hypersensitive to anything that isn't natural and pure.
Thank you so much for any advice you can offer.
Kind regards, Dawn
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Really don't know what to say - Thank God your Son has you. Do you think he should take the one-off anti-parasite medication? Have you both studied the patient information leaflet with this medication? Is there a Tropical Disease Centre near you. Or could you phone one for advice? I will Google the one I'm thinking of and pm the phone number.
Do you think you need to keep pestering the GP till you get appropriate action and medical care?
Have you / has your Son considered going to A&E?
This situation can't go on can it?
I am appalled that you had to go private for this. Urgent no, - IMMEDIATE action should have been taken by GP.
GP could have admitted your Son to Emergency Care Centre at A&E.
I think, if this were me, I would be taking him to A&E.
Aww bless you Mary, thank you for such a lovely post.
Yes, I hope I can persuade him to take the anti-parasite medication. I did read the patient information leaflet and I must admit that they always scare me! But we will never know unless he tries it. Perhaps he needs to start one thing at a time though, as I think his poor body was bombarded with starting levo and antibiotics the very same morning.
Don't think there is a Tropical Disease Centre very near us - probably London, which is a few hours away and too far for him to travel in his current condition. But yes, I could phone one for advice, that's a good idea.
GP isn't very helpful or sympathetic. When I asked quite early on if he would refer him to a specialist to try to help him he just replied, "Well which kind of specialist would you like to see?!!!" I wasn't hugely impressed with that response!
I did actually take him to A&E in December after going to the private hospital for the blood tests. He was in a dreadful state and passed out when the blood was taken. He was begging the nurse to help him because he felt so ill and she was alarmed and suggested that I take him to A&E. However, as always his blood pressure, oxygen levels, etc, etc were fine, so his body is healthy overall, which is great, but something is very, very wrong with him that isn't showing up.
Also in October he was having breathing difficulties when I was driving him in the car (he cannot cope with being driven anywhere - the motion and noise/ vibrations cause him extreme distress), so I took him straight back home and the GP receptionist suggested that I call an ambulance. They checked him over and because everything they tested was fine, we really felt like we were wasting their time and they put it down to a panic attack.
So now I am trying to find out about his thyroid and if it is likely that the levo might be able to help. Just cannot bear the thought of giving him unnecessary medication that might make him feel terrible.
It's such an awful situation. I really appreciate your advice, thank you.
Think I must have fallen asleep as I was about to Google !! And we had a busy day today (hospital appoinment).
This is what I was thinking about:
Liverpool School of Tropical Medicine Pembroke Place,Liverpool, L3 5QA UK
Phone numbers :
General 0151 705 3100
Well Travelled Clinic 0151 705 3223
email
info@lstmed.ac.uk
I would phone them first thing around 8.15 - 8.45am.
You and your son could also go back to GP and ask for an urgent referal to a Neurologist. Tinnitus also comes under ENT department. Is there a different GP at the practice you could see?
Also contact the WHO ? Have you Googled Echinococus parasite ?
2 full days left till the weekend so I hope you can get somewhere before then.
Sorry for late reply. Hope his health starts improving soon.
Good question, if he does have a parasite in his body I assume it will continue to breed? His last trip abroad was in July, so he would have picked it up before then.
The parasite drug is called albendazole and he saw the private endocrinologist on 12th January and has just finished the course of antibiotics for the legionella.
I would have taken that first. Sounds like he should have been given this month's ago.
If you Google " Echinococus treatment" you will read that, of the two treatments, that's the best.
Do you think your son's GP might be assuming that he has taken it?
I'm guessing that the private Endocrinologist would have written to his GP to inform what meds he has given. This, however, is no excuse for neither the GP nor the hospital A&E not treating him much sooner.
If you want to take this up with the Health Secretary :
I would get a stool sample into GP as quickly as possible. If you can't get agreement from GP today to give you the container and form, then I would consider Out-of-hours or A&E.
Have you tried phoning to ask to speak to the senior practice nurse.
Another angle - Outpatients Manager (Charge Nurse/Sister) from when you were seen in Outpatients. Or A&E senior nurse / department manager.
What test did Endocrinologist do that led to finding ?
My brain is winding down now so I can't comment on everything but one thing jumped out at me.
"my son started to take the antibiotic and the thyroxine at the same time"
Do you mean he took both tablets together? If so Levo must be taken on it's own, on an empty stomach, one hour before or 2 hours after food, with a glass of water only and water only for one hour each side. Antibiotics should be taken as far away as possible, at least 4 hours.
Thank you Susie for your advice and comments, really appreciate it.
No, he didn't take both tablets together at the exact same time - he started them on the same day.
He took Levo first thing in the morning 30 - 60 minutes before food. He did take it with water, but then had a hot water drink with ginger to help his nausea with his breakfast. So no, it wasn't plain water. However, all he ever drinks is water, herbal or fruit tea or water with fresh ginger in it.
He took the antibiotics with his breakfast, half an hour to an hour later. So perhaps that was the problem?
No, thyroid antibodies haven't been tested - it hasn't been offered and I didn't know about that test. Perhaps I need to look into it and ask the endocrinologist.
As there's family members with autoimmune thyroid disease you MUST get thyroid antibodies tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Ask GP to test thyroid antibodies and vitamins NOW
If GP is difficult, just test vitamin D privately now
Then look at private Testing of Thyroid antibodies, and other vitamins along with a TSH, FT4 and FT3 after 6-8 weeks on constant dose of Levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
25mcg dose is very low. Only half standard recommended starter dose. So it can make people feel worse. It doesn't add extra thyroid hormones to your own production. It tends to turn our own thyroid production down. But sticking with it for 6-8 weeks and then getting bloods retested, before dose is increased
dose of Levothyroxine is increased in 25mcg steps, retesting 6-8 weeks later each time
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
One last thought, have you considered Lyme Disease - due to tick bite. Causes lots of problems that affect Thyroid etc
I'm sorry to read of your son's health issues. The thing that sticks with me, is his travelling. I remember watching the tv programme "Help I caught it Abroad" which followed doctors at the Liverpool School of Tropical Medicine, the Well Travelled Clinics, and The Royal Liverpool University Hospital, as they successfully investigated and treated a wide range of sometimes obscure conditions including malaria, snakebite, leprosy, parasitic infections and so on, that other clinicians had failed to diagnose. If it were me, I'd contact the LSTM and take advice about how and where you might progress further, more advanced investigations in light of your son's international travel.
Yes my gut feeling is that he's picked something up while travelling that hasn't been identified and it is causing other problems in his body.
The positive legionella antibodies result has really troubled me, although GP has completely dismissed and ignored it and said that nhs cannot interpret blood test results.
I get a little annoyed with doctors that label people with ME without proper investigations. A friend of mine had similar symptoms and it turned out to be Lyme's Disease and is being treated privately. Lyme's disease is very clever at hiding itself.
Not saying this is what he has but I agree that this needs better diagnosis and travelling abroad stands out. If it was me I would be writing to your GP practice saying you are not happy with his treatment and asking for a thorough consultation. Perhaps keep a diary which will help in proving what is going on.
I'm very sorry about your sons health, I can't imagine how he is feeling right now. Now I am no thyroid expert but what I do know is that if your family has thyroid disorders it may be probable that he may be suffering from it as well. Hashimotos thyroiditis is a condition where the bodys immune system attacks the thyroid gland. After each attack thyroid hormones are released into the blood stream indicating "normal" thyroid ranges. However after an "attack" the hormones settle and eventually leaves him with hypothyroidism. I would suggest and advise you to check his thyroid levels one more time (the earliest in the morning, make sure he stops his thyroid medication 24 hours before the test). If the results still seem normal it may be something else. I really hope you find some answers and I hope your son gets better soon! Take care now!
I also think you need to ensure that this is not something he has picked up form travelling and see a tropical disease specialist. It is clearly not something a GP is used to seeing and they tend to fall back on ‘its all in the mind’ or a vague diagnosis like ME. I sounds like it may be something not usually seen by doctors so they run the usual tests and don’t find anything. He clearly isn’t okay and needs help.i think at the very least you need to eliminate this possibility before looking elsewhere for a cause. Sorry you and your son are in this situation. I really hope you find some help. 🤸🏿♀️
I had to Google "ME" because it isn't a commonly used term in the U.S. I found this:
"Prognosis
PLEASE NOTE – before considering prognosis, it is important to obtain a positive diagnosis, which should be determined only by a suitably qualified medical professional."
It doesn't sound like this describes your son's doctor.
Horrible to see your son like this & having no direction from doctors. Typically, most parasite labs don't yield anything because the tests aren't accurate. Doctors are woefully ignorant about parasites & don't even know what to test for. So, it's fortunate echinococcus was found. People can have this for many years until symptoms show. I hope you can convince him to take the med because it's a serious parasite that, depending on the type of echinococcus, can reside in the lungs, liver & brain. Not to frighten you, that perhaps this could be causing his tinnitus, breathing problems & motion sensitivity. Of course, it could also be something else entirely.
Great suggestions to contact tropical disease specialists. Hopefully, they can recommend appropriate tests & where to get them.
I can't stress enough how important it is to support the kidneys, liver, bowels & lymph glands with parasitic & bacterial infections. The die-off can make people feel quite ill when they can't detox properly. There are many herbal combinations for supporting detox pathways. Lymph is something that can be done with dry brushing, in addition to herbal preparations.
Wishing the very best healing for your son. Hope you let us know how he does.
Thank you for your reply. I agree that he needs to take this tablet for echinococcus, or else we will be forever wondering. I'm just a bit worried about possible side effects in his current fragile condition. Also that it is an unlicensed drug, which I hope doesn't mean that it is dangerous to take. I guess the consultant who prescribed it must know what he is doing!
I'm in the US & afraid don't know what unlicensed means, but understand your reluctance. You should be able to Google licensed drugs & ask the doctor why he prescribed that med & ask about side effects. On a positive note, if the parasite is causing a host of problems, your dear son may feel a lot better. Parasites by definition cause health issues, if we're defining them correctly.
Supporting detox pathways helps mitigate side effects.
Sounds complicated... maybe he has picked up a tropical disease. There is a really good centre for tropical disease in London. Take him there maybe. What were his thyroid blood results? Did he have a full thyroid blood screen? Maybe just persist with tests and scans, pay privately and try and eliminate one by one what it might be. It could be ME of course... it’s not pyschological, it’s caused by a gene abnormality, so it IS real.
His thyroid levels were within range, but his thyroid is feeling like a golf ball in his throat. Perhaps it is just reacting to all that's going on in his poor body as all of his neck glands are swollen and tender.
However I will get full thyroid blood screen done, because it is so swollen and because of the family history.
Unfortunately the tropical disease centre in London are a teaching organisation and don't give advice. I really am having no luck at all with getting help, it is very frustrating. There is one in Liverpool who says that GP needs to phone them or refer. But the GP has dismissed the result as being unimportant.
Re the antibiotics and stomach pain: I had to have a 7 day course of 2 antibiotics twice a day ( diverticulitis) Terrible stomach pain towards end of course. I had some probiotics in so took 2 a day but what stopped the pain almost instantly was kefir. Sainsburys have one in a tub, like very thick yogurt & it's delicious.
I also think your son should have been referred to a Tropical Disease Centre. When I came back from a developing country with some unusual symptoms it was first thing GP did--- called them and got immediate advice on tests I should have done. Went to hospital next day for X-rays, eye exam and bloods ( about 8 different pots)
Thank you for advice re kefir. He does take probiotics, but I've heard that kefir is good.
Your GP sounds so much better than ours! My son has had no scans, x rays, eye exams etc and has only had routine blood tests, apart from ones I've paid for privately.
I will try speaking to a tropical disease centre today and try to get some advice.
It was about 14-15 yea s ago and the GP was a Locum so didn't want to make any mistakes. GPs I have now are very poor.
If you speak to the tropical diseases centre my advice would be to state your sons worst treatments, if he is deteriorating, and the worst countries he went to conditions wise. I came back from Africa with a sore eye and as I'd been helping at a clinic where I saw kids with worms living in their eyes I thought it might be psychosomatic. But as I'd also had a headache for 5 days, and there were high creatinine levels in my urine they were quick off the ball to check for everything.
Good luck, I hope you can get some answers for your son.
Thank you, yes I'm worried about it too. I would have been more excited that we might have found the answer. But after positive legionella antibodies result being totally dismissed, i thought Dr's certainly wouldnt acknowledge a borderline positive echinococcus result!
I was made to feel almost like a naughty child for getting those blood tests done and causing confusion, distress and unnecessarily raised hopes. They said that i should just stick with NHS testing, but no further help offered from NHS. My poor son was so upset and despondent and wants no more appointments because he thinks they are a waste of time and make him feel worse physically and mentally.
Yes i did read some scary things about reactions caused by die off, which I don't yet feel prepared for, so must do more research. I'm so frightened of him feeling much worse, which I can't imagine, as he is already rock bottom.
My heart goes out to you. I have visited the Liverpool School of Tropical Medicine and they and others have some good people working hard to combat diseases. I hope you soon get to the bottom of this to help your son in his recovery.
The problem is so many symptoms overlap and most drs/consultants nhs or private are very limited in their knowledge. It is said most are 17 years behind current thinking as after training they do not keep up with new diagnosis or treatment.
I just want to say I'm so sorry about what's happened to your son. And also send you some hugs, it must be torture for you watching your child suffer, but don't lose hope there is an answer somewhere. In addition to the advice you have already had have you have a comprehensive look at all his nutrients? Has he been tested for EBV and Lyme? Lyme needs a bit of research as the nhs offer a basic test but there's more than one. It can happen even if he doesn't remember a tick bite and didn't get the bullseye redness.
In addition to thyroid testing I would get him a full blood count, ferritin, full iron panel, cortisol, magnesium, potassium, selenium, zinc, serum b12, active b12, homocysteine, methylmalonic acid (mma), intrinsic factor, parietal cell antibodies, folate, vitamin b6, vitamin d3, bone profile, inflammatory markers, ear, crp and ask the Dr to send him to a rheumatologist, they need to test for autoimmune diseases, gp can do these too which might be easier as district nurse can draw blood for these at home.
I got diagnosed with ME a long time ago I was in a terrible state, much like your son but not as severe, I was bed bound, swollen glands, throAt infection, big glands everywhere, swollen face and throat, crushing fatigue, sensitivity to light, sounds, dizziness, tinnitus, nausea, depression, anxiety.. list was endless. I then fought to get answers because whilst I do believe in ME I think all too often drs just diagnose every case they can't be bothered to investigate with it, and in a lot of cases like mine I was misdiagnosed. In the end it turns out I have eds, pots, autoimmune disease including lupus, sjogrens, under active thyroid, and pernicious anaemia.
Now b12 is absolutely vital to get checked in depth, please google Tracey wittys website b12, it's full of amazing info. If it is a parasitic infection, a lot of these infections really deplete the b12, folate etc and given that he's bed bound his vitamin d is likely to be rock bottom. Low vitamin d affects so many areas of functioning. Thyroiditis will affect vitamin levels too or vice versa. No matter the cause getting vitamins sorted is vitamin to support this process. You could consider adrenal saliva testing at some point too. Don't supplement any vitamins before doing any testing as especially supplementing b12 will invalidate the b12 results and it can stay in the system where tests are concerned for ages, but that doesn't mean he's able to absorb any of it. Gp or others drs can do these tests but all are available on medichecks, blue horizon or Genova if they refuse any.
I've found the ELISA test on medichecks for £49 and it can be done with a finger prick test. It's not the best and can give false positives, and not be accurate in the early stages of disease, I think the nhs test for this one. The western blot or immunoblot test is better, that's on medic he is for £299. I would either ask the gp to test for Lyme and ask what test they are doing, you might get lucky or get the ELISA and see what comes back, if it's positive ask for a referral to a specialist for further testing, the advice you received regarding seeking help from the tropical disease hospital is a great idea too. I'm going to see if I can get nice guidelines for ME for you, it used to state what infections should be ruled out, you used to be able to see the map of medicine but it's not accessible by non medical professionals now.
I would also get him on high dose vitamin c after testing as it supports immune system and connective tissue. Keep searching for answers, I wish you both all the best xx
Many thanks for your detailed and very helpful reply. Have booked him for a lyme test at GP surgery, will await the result and consider getting the other ones done too
That's brilliant. Find out what test it is, if it's the ELISA I would also ask for the western blot or immunology aswell. And regarding the b12, folate, vitamin d3, ferritin, iron panel, bone profile, potassium they are so crucial, especially if it's Lyme, parasite or thyroid disease. I would get as many as you can added, even if just the ones I've added on this message, because then it's just one test rather than more tests another day. Low levels or non optimal levels of these on their own cause horrible symptoms, let alone if there's another condition drawing on them. They are vital to be tested.
Hi Dawn. Gid love you both. First thing I would do is get him tested for Lyme disease. I watched a documentary on Netflix about a you man and he has very similar symptoms and it's Lyme disease. Also find a functional medical doctor as they don't just treat the symptoms but find the root cause of his illness. Pray for you both.
Thanks you for your reply. My son is convinced that he might have lyme and is very worried about it. We need to get the tests done to confirm or rule it out. It certainly looks a very nasty disease, so although it would be great to have a proper diagnosis, it is rather scary to think it could be that. It would just be wonderful to know though, so that we can stop searching.
My son didnt do the same as your son..travel etc, but he did get ill, have antibiotics then was unable to get out of bed for 4 months. GP suggested the same kind of things. Useless! We also have thyroid issues in the family.
We got tests done measuring the effect foods had on his energy. He had to completely give up wheat, sugar, mushrooms, cheese and only have organic eggs. Limit fruit and no beer or wine. he regained some energy and his thinking got better almost immediately and improvements happened enough for him to take some exams a month later. It took longer for his energy to become sustainable.
Meanwhile we gave him lots of antioxidants, trace minerals and good nutrition. knowing more now I would have done more juicing for him, eg carrots, beets, ginger, turmeric greens etc for more enzymes and nutrition straight into his system.
The travel did involve stress, therefore loss of nutrients. it must have involved hot countries and more sweating, therefore loss of trace minerals and nutrients. When we deplete nutrients we must replace them and food alone is not enough. The immune system gets compromised and there may have been, as you say parasites and bugs.
Whatever the treatment so far it hasn't worked, as it didnt with my son. it is when I learned a lot more and we all changed our diet to be organic, saw he benefitted by cutting some foods right out etc, and made sure we cut down on any sources of toxicity in the home.
Maybe this helps. Maybe you have already got to the same kind of thinking. Very best wishes.
Yes, I am cooking all of our food from scratch, which is rather a strain every single day, although luckily I do enjoy cooking. He only wants pure and natural food and doesn't want chemicals of any kind in or near his body - he is hugely sensitive.
Yes he is now 34 with 2 children and very busy, not 16, and has not looked back since making the big changes. After about 3 years he re introduced most things, but has never been able to eat cheese. He was growing an inch a month at the time (now 6'9"!) and wanting food all the time! I made the Cranks soaked muesli which he ate as snacks, great because it wasn't cooked. oats, orange juice sultanas nuts and seeds. Now I think I would have done juicing more.
Has he been checked for glandular fever? I'm not sure you would get all these symtoms but maybe he has multiple conditions going on? Naother poster suggested a diary with symptoms and severity and this can be a really useful tool for you all and the medical people you consult. You may want to add in his temperature and weight...
"he displays a lot of symptoms of thyroid dysfunction and it runs in our family ( Dad is hypothyroid, Grandfather and Great Grandfather hyperthyroid)."
Hi Dawn,
I know that you have had a lot of replies, but they focus mainly on the foreign travel rather than the family history.
The family history in association with your son's symptoms points to a genetic thyroid condition. The condition is known as Impaired Sensitivity to Thyroid Hormone, sometimes called Thyroid Hormone Resistance.
With the condition you require very high levels of thyroid hormones to overcome the resistance and T3 generally works best.
Unfortunately it is very difficult to get good information on the condition so I will send you a personal message.
I would request (your son would need to do an email or letter) copies of all hospital records - scan report and blood test results/reports.
Anyone in UK can get these free of charge now since change of rules in May 2018. And they can't make you wait 40 days - have to respond.
Find out from your hospital the name, email & postal address of the person dealing with requests. This will be someone in Medical Records or Legal Services Dept.
He should also get copies of GP records (he could authorise you ?)
You can ask for the private notes and reports too - they can't charge either.
My son took the treatment for echinococcus parasite yesterday and didn't suffer too severely from side effects, his appetite just went down and he felt a bit nauseous. So will have to wait and see if anything happens - I guess if any parasites are present they won't die immediately? I also read an interesting article online about how the parasite usually infects the lungs, liver or brain, but in rare cases can infect the thyroid and create cysts there. Sounds absolutely awful!
On Thursday I got a reply from his private endocrinologist consultant, who asked me to let him know if the thyroid is still inflamed in 2 - 3 days. He said that if it is, it strongly suggests thyroiditis and that a steroid will get the swelling down.
I also managed to get an emergency phone call from a GP on Thursday as well, as his thyroid was really troubling him and he said he was having difficulty swallowing. She said that she had no idea what is wrong with my son, but did book for him to have a blood test the following day for thyroid and inflammation.
Unfortunately the thyroid is still inflamed and causing swallowing difficulties and the lump in the neck is making him feel sick. It is also keeping him awake during the night because of the pain and discomfort. He says that the inflammation fluctuates throughout the day and the tinnitus is worse when the thyroid is feeling worse.
I have emailed the consultant again as he requested and I am waiting to see what he advises.
My son hates the idea of taking steroids (or any medication in general), but if it will help his symptoms then I guess that's what he needs to do. I just hope that the consultant will get to the root cause of the issue as well as just alleviating the symptoms.
If his thyroid is swollen something is going on there. I had a low thyroid with a thyroid nodule and got very ill. I now take T3, sea kelp, about 4000 is of vit d and two tablets of k2, probiotics. I would start with increasing vitamin d3, taking sea kelp and also take some enzymes such as serrapeptase. Also switch to as many organic foods as possible and low carbohydrate foods. I follow a chiropractor online on YouTube. Their knowledge is far more useful than traditional medicine. Hope this helps.
There's a good article on Legionella Antibodies on the Internet by NHS Gloucestershire Hospitals.
There's mention of having a urine sample tested. Just wondered if, now the antibiotics are finished, he should have follow up testing to see if Legionaries has been successfully treated?
As Legionaries is a notifiable disease, isn't the Public Health Team helping him with testing?
He has now had urine sample, which fortunately came back negative. However, this test does just measure active infection. It does appear to me that perhaps Jack's condition might have been triggered by a previous infection?
I have been confused about lack of concern re it being a notifiable disease. I expected to be contacted by the authorities, but no one has seemed even slightly interested! Perhaps because we have no idea where he would have picked it up from? And nhs infectious diseases consultant said that the private blood blood tests would probably be unreliable and we shouldn't have had them done.
It must be very hard for your son going through these terrible health challenges especially seeing all his friends make their way in the world whilst he is bedridden so I was wondering about psychological support. You say he tried CBT which wasn’t effective so it is really worth trying to locate a therapist who he clicks with. Maybe someone who specialises in people with health problems/pain. It’s also v hard for you too going through this so I would consider asking for counselling support too. Being able to process what is happening to us physically can be extremely helpful in coping with our health conditions. It sounds as though your son is understandably depressed and given what he’s going through I can’t imagine anyone not getting depressed with his list of symptoms. Once he starts to feel less depressed it might enable him to start being proactive about his health as well as you supporting him. You’re an amazing mum, he’s lucky to have you.
Thank you Jane for lovely comments and good advice.
Yes he really does need to talk to someone - he is very angry with everyone and with the world for all this that is happening to him without any obvious or confirmed reason and the unfairness of it all.
So yes, counselling is a good idea. Perhaps he could have brief phone sessions as he is too ill to travel.
I would love to be able to talk to a Dr to try to get answers to my questions and concerns, but there isn't a facility for this! However this group is a great support so thank you 😀
Hi Prawnigan here are some support services for your son (for under 25s)
The Mix offers confidential support including web chat: themix.org.uk 08088084994.
Support Line also offers confidential emotional support 01708765200. Young Minds another alternative youngminds.org.uk
It would be excellent if he could see a good local psychotherapist but online help might be the stepping stone to that. If you think he might see someone locally I will try to point you in the right direction.
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