My daughter has been getting nowhere and as time passes more symptoms appear. I first noted that she was anxious and low. She would get panicky. This all got swept under the carpet by GP. She has gained weight and gets bloated water wise etc. Hair loss is a bit more frequent where after brushing she loses a fair bit. Her menstrual cycle was a bit erratic so the GP put her on the pill and it was ok for a bit but then she was getting headaches and sometimes really sick. Vomiting every time a period was due. So they altered the pill and coincidentally symptoms eased but she gets these odd periodic shakes and tremors where she says she feels cold and I have begun taking her temp. Usually when they occur her body temp is about 35.3-35.6. She has now begun to get a touch of IBS and pain in the abdomen. I was like it all sounds a bit mad when put together but after reading about Wilson's syndrome it all fits!! The doctor has done FBC and Thyroid tests but always says they are normal. Surely it can't be a coincidence. Also, underactive thyroid runs in both sides of my family in my nans who take thyroxine. She feels tired and exhausted a lot and gets joint pain. I am at a loss as to who I should ask to see or where to get help or treatment. She is only 18 and I don't feel it is right to keep apportioning the blame constantly to other conditions as it is easier... Can anyone assist? Thanks
Some advice for a parent of a suffering daughter - Thyroid UK
Some advice for a parent of a suffering daughter
I would also add her memory can suffer and she can get frustrated as she cannot always retain information. There seem to be more symptoms as we go on... 😔
after reading about Wilson's syndrome it all fits
Unfortunately doctors don't believe in Wilson's Temperature Syndrome, they think it is quackery :
en.wikipedia.org/wiki/Wilso...
Did you mean that particular condition? Or Wilson's Disease which is an entirely different condition that doctors do believe in?
en.wikipedia.org/wiki/Wilso...
The doctor has done FBC and Thyroid tests but always says they are normal.
Your daughter needs to ask for a copy of those results from her surgery - the results and the reference ranges. It is worth saying "I want the results and reference ranges for the tests done from the blood sample taken on DD/MM/YYYY". Make sure they aren't scribbled on a bit of paper by a receptionist. They need to be printed out directly from her records to reduce the chance of mistakes. No doctor appointment is required (and it would annoy the doctor if anyone did this). Receptionists should print them out, although they will probably need to get permission from the doctor to do this. Remember to take proof of identity with you. Then either you or your daughter should post the results and reference ranges into a new thread and ask for them to be interpreted.
Be aware that many doctors will see a result for, say, ferritin (iron stores) like the following and think it is fine because it is in range :
Ferritin 20 mcg/L Range 13 - 150
[Note, it is important to quote ranges with results because they vary from lab to lab. Results must always be compared to the range they came with.]
Imagine three patients A, B, and C had a ferritin test with the same range (13 - 150) and units of measurement (mcg/L) as above and the results were :
A: 13
B : 82 (roughly mid-range)
C : 150
Many doctors would ignore, or not even notice, these results because they are all in range. But it is likely that the patient who feels worst is A and the one who feels best is B.
It really matters where results appear given the reference range.
So, getting hold of your daughter's results is very important, and it is essential to start keeping records of such results. Having a test result history can tell you if a particular result is rising and rising, or falling and falling, or staying in or near the middle. It also is important to realise that some tests to be optimal would be near the bottom of the range, near the middle, a little bit over the middle, or near the top. They aren't all the same, which is why you need interpretation from somebody knowledgeable on the forum.
Just based on the symptoms you mention :
Low temperature - common in hypothyroidism
Panic attacks or anxiety - common in hypothyroidism or hyperthyroidism, but also in other conditions e.g. high or low cortisol, and also low iron or ferritin.
Hair loss - common in thyroid disease and low iron and/or ferritin (iron stores)
Shakes and tremors - common in thyroid disease, can be associated with low or high cortisol.
IBS - people who are hypo tend to have low stomach acid. This may also explain the vomiting. Low stomach acid can lead to poor absorption of nutrients, diarrhoea, constipation, diseases of the gut.
She feels tired and exhausted a lot and gets joint pain.
Fatigue can happen with thyroid disease, low nutrients and many other conditions. Joint pain could be low vitamin D.
Regarding body temperature, some people find that when nutrients, thyroid hormones and cortisol are optimised that body temperature will return to "normal". But if someone has had untreated thyroid disease for a long time the body temperature may never return to "normal".
Thanks for all of your help I will get her to ask for them and maybe repeat them. It is ridiculous and GP's don't listen. Who can we see privately if I get nowhere...How do we get these tests taken seriously and repeated? x
I've never seen an endocrinologist either on the NHS or privately so can't help with an individual name.
Thyroid UK has a list of private doctors that someone at some point has said they got helpful treatment and care from. They aren't recommendations from Thyroid UK itself, the list is all based on personal experience. I would suggest that you ask for help on here, take it as far as possible, then ask again with any remaining problems.
See this link :
thyroiduk.org/help-and-supp...
There used to be an NHS doctor list but it seems to have vanished. You could ask about it, but I don't know what the response would be.
As for tests, many of us have accepted that the NHS will never do all the tests we want e.g. getting Free T4 and Free T3 tested with TSH on the NHS is rare, but absolutely vital for proper diagnosis. Doctors diagnose with one arm or both arms tied behind their backs, although I doubt many of them realise it, and think that TSH is all that is required.
If you want info on private testing (no doctor required), ask for help. Don't spend any money without asking for confirmation that you have chosen the right tests to buy.
Unfortunately doctors tie their patients up in knots too. If a private test shows a low Free T3 the doctor is almost certainly going to ignore it because so few of them know what Free T3 is, or how important it is, and many of them find it helpful to them to ignore private testing because they claim not to trust it.
[But if Lord Muck the multi-millionaire became an NHS patient (joke) and paid for private testing I suspect he might be believed.]
The value of this forum is that you have the benefit of thousands of years of patient experience. We can help with improving nutrient levels for example i.e. what doses to take, for how long, and how to test at minimum expense (although that minimum isn't always low. ) We can also discuss evidence that might be helpful to the patient in discussion with doctors. And we can suggest that you need a diagnosis or an increase or decrease in dose,. We can suggest how to get the best out of any testing you do, NHS or private.
Brilliant thank you. Its a mine field isn't it? So what do you take or do if you think it is thyroid issue or wilsons temperature? How do you get medication? Sorry to ask so many questions x
Also, headaches and vomiting can be signs of migraine, also a symptom of thyroid disease, and also often misunderstood by GPs.
Coincidentally it is usually around her period but I don't think migraine based. She has too many other. symptoms that fit the bill for temperature issue...I just need to get her sorted I don't know how if GP wont listen x
When you say that your daughter’s bloods are ok, has FT3 ever been tested. My daughter, who is now 48, was so ill in her teens. She did get in to university, but not her chosen one as by then she was having memory problems and exams were difficult for her, she fell asleep all the time, but doctors told her it was because she was living the university life (she was existing not living). My happy go lucky daughter was becoming more and more depressed. Although an under active thyroid usually means weight gain, she became thinner and thinner. The university GP told her, ‘don’t be stupid, you would be fat if you had hypothyroidism’! I heard about the late, great Dr Skinner and he turned her life around. As with me, nobody had tested our T3 levels. My daughter takes Armour thyroid and I take Liothyronine. Members on here should be able to PM you with details of doctors who treat with T3 or Thyroid U.K. can help you. I really hope that your daughter gets the help she needs.
I don't think they have tested her thyroid recently...or FT3 ever! Thyroid test a while back and hormones and FBC. They just treat her like a hypochondriac 
Push for it. Ive had ibs ,memory loss, weight gain, high cholesterol for 20plus years. Only last year did they find out it was hypothyroidism. They put me on levothyroxine. My ibs disappeared. Still got a few issues but probably need bigger dose but still working on that. And yes they do treat you like a hypochondriac but they don't apologize when they find out you were right.
I was just about to write almost the exact same post! My 19 year old is going through the exact same thing. Her fatigue is horrible and she’s falling asleep at work. Her tsh was 4.89 and her last was 4.25, both of which the doctor said were no cause for concern. Said they don’t test t3 as her t4 is fine. I asked about issues converting and she said that’s not a thing. Unbelievable! She has had gut issues for 2 years which has been put down to anxiety, then gastroenteritis and now ibs. They basically said it’s all in her head. I have hashimotos and her antibodies when last tested were only 10 so they aren’t retesting and have dismissed that. She feel so poorly all the time and I don’t know what to do for her next. I’m trying to order a private thyroid panel at the moment with vitamin checks just to see where she’s at. I really feel for you x
Oh my...you sound like me. So frustrating isn't it? Especially when we still cannot go to see the GP its all telephone!! She is suffering and having taken her temperature periodically each day and done averages she is only just if ever in the 36 something. Mostly 35.8 and cold. Where or how did you get the testing done and how do I go about this please x
sorry for the delay in replying. I only just found the alerts section - all new to this website! I booked the advanced thyroid panel with vitamin testing via medichecks. It was about £78 and I will get her blood taken at a local clinic for £30. You can do your own finger prick but she has severe needle phobia so that would not go well I fear 🤣
Hi Mummasloth,
Welcome to the forum 😊
Humanbean has given you great advice; getting access to my blood test results was an eye opener for me when I first starting using the forum. I'd always naively trusted the 'in-range no action' response from my surgery regarding blood tests.
Some surgery's use Patient Access or something similar where you can get to view your blood test results online. So get your daughter to ask them if that's available and get that set up as it can be helpful. Some members' have had problems with Patient Access but generally I've found it useful.
If they don't offer on-line access, make sure as humanbean says to always get any blood results printed off by the surgery never rely on results scribbled down by the reception as mistakes can be made.
It must be very worrying for you but you have arrived at the right place. The members on the forum have lots of experience and knowledge and will be able to guide and make suggestions to help you and your daughter.
Best wishes.
Thank you yes I will ask as I am now quite concerned and this is the case for so long...years infact. Wouldn't have occurred to me if I hadn't of taken her temperature. Its just awful x
Please add actual results and ranges on her blood test results
what’s her diet like
Is she vegetarian or vegan
Or dairy free diet or gluten free diet
For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
IBS is extremely common hypothyroid symptom
Joint pain is frequently low vitamin D, very common when hypothyroid
Thanks for all of this help. So...probably a thick question but if I get the test done with one of these options what do I do with results to get help or treatment. She isn't vegan, veggieor free from although we do have soya milk as it's just better for us personally. As thyroid issues run through my family on both sides I am thinking this is what it could be but you trust the docs don't you? I was recently rushed into hospital as had severe anaemia. My doctor had said my levels were ok and they weren't by a long shot as I had 4 units of blood. I have this awful ringing in my ears and fear its returning but he says not! Im not convinced. Now I am taking my daughters temp I never realised how low it is on regular basis upon average reading over last 4 days 35.6...I appreciate all of your advice. x
Soya is a real “no no” for anyone with suspected thyroid issues
Try oat milk instead?
Soya significantly affects thyroid in everyone
Suggest you both cut soya completely and test thyroid and vitamins in 6-8 weeks
Anaemia is strongly linked to being hypothyroid
Low vitamin D, folate, ferritin or B12 will tend to lower TSH
Are you now on iron supplements or getting iron infusion
if I get the test done with one of these options what do I do with results to get help or treatment.
Come back here with new post
Members can advise on next steps
Examples of posts with private test results
Medichecks
healthunlocked.com/search/p...
Blue horizon
suggest you also get thyroid levels tested ,….but perhaps work on improving low ferritin for 6-8 weeks first
Likely to take many months to improve low ferritin levels
You could test your vitamin D now
NHS easy postal kit vitamin D test £29 via
Another sneaky thing that happens with blood tests to be aware of :
The doctor might agree to test X, Y and Z, and each test requires a separate blood tube. Tests X and Y go through with no problems. But the tube for test Z is clotted and can't be used, or a member of staff drops the tube or spills the blood by accident.
If the doctor works out that test Z wasn't carried out for any reason and the test results for Z say "Clotted" or are just missing entirely, the patient will be told that Test Z was "Normal", rather than the test being repeated.
As an example of another common lie from doctors, a patient might ask for a full Thyroid Function Test to be carried out because they want their Free T3 to be tested. The lab will test TSH, and if it is in range they won't test the Free T4 and the Free T3. If the TSH is out of range (but only slightly) the Free T4 might or might not be tested. If the Free T4 is out of range then Free T3 might be tested - but I wouldn't bet on it. And the patient will be told that all their tests are normal.
I would second getting your results. My GP thinks TSH of 13.5 (0.27-4.5) is normal and I dread to wonder how long that has gone on for.
Wow! That is negligence! You must feel dreadful. I would say you have some choices - change your doctor, or send in a complaint, or do both.
NICE publishes Clinical Knowledge Summaries (CKS) on their website. [Be aware that patients might not agree with every word in them.]
Read this link on assessment of patients who may have hypothyroidism :
cks.nice.org.uk/topics/hypo...
If the TSH level is above the normal reference range, the free thyroxine (FT4) level should be measured in the same sample.
Suspect a diagnosis of primary hypothyroidism if TSH levels are above the normal reference range (usually above 10 mU/L) and FT4 is below the normal reference range.
Suspect a diagnosis of subclinical hypothyroidism if TSH levels are above the normal reference range and FT4 is within the normal reference range.
In non-pregnant people, repeat TFTs 3–6 months after the initial result to exclude other causes of a transiently raised TSH and to confirm the diagnosis.
The whole CKS on hypothyroidism can be found here :
cks.nice.org.uk/topics/hypo...
I don't think doctors are obliged to follow guidelines and CKS from NICE, but they do give you ammunition to use in your discussions with doctors.
thanks humanbean, that’s interesting and useful.
I’ve never been right since RAH, but only since coming on here and seeing results myself have I learned how far out my levels are sometimes. Also, it all fits with lack of understanding/treating you for something you don’t have (favourite with them is depression) etc, meaning you don’t ever recover.
I’m all over it now and last April I requested vitamin D , which turned out to be 15. Gp prescribed a low dose Vit d , no k2. Slow dragon and seaside susie gave good advice on that, so I’ve been self medicating . Just had it tested again and I’m now 84. I’m also fairly sure I’ve lost some bone density. Bone test was close to low border, but within range. It’s gone up slightly with the improved Vit D.
Now I’ll start to improve B vits.
Going for T3 testing next.
Your life in their hands eh? X
Remember a Free T3 test is not useful on its own. You need to do TSH, Free T4 and Free T3 altogether from the same blood sample. 
thanks for the tip, I haven’t picked up on that. 😊
The cheapest private test I know of is this one by Monitor My Health :
monitormyhealth.org.uk/thyr...
There is a discount code given on this link :
thyroiduk.org/help-and-supp...
giving a price of £26.10 after discount.
thank you x
Could definitely be thyroid. But if confirmed it is a thyroid issue I would say please don't leave it there. Consider learning as much as you can which is obviously what you have been doing /researching .
Our intestinal microbiome balance is crucial for our health. The organisms and bacteria message the mitochondria in all our cells (quorum sensing) There are 1,000s of mitochondria in every cell (except blood cells) 10s of thousands in every cell in the more energy consuming organs such as the eye, brain, heart, liver thyroid etc. Mitochondria are our energy producers - ATP.
So get the balance right of good /helpful bacteria/organisms in the intestinal tract. See website Microbz.co.uk for probiotics (important to have such a wide range of species, any old pill or commercial yoghurt won't do). Bio Live Dark is a liquid - tiny capful, provided. Tastes like ginger beer to me, not awful. Also need prebiotics for the probiotics to feed on. You can buy Inulin from health food shops /amazon which is powdered chicory root - very sweet, so can add to water or anything/baking etc. We can't digest, but the healthy bacteria can as with all fibre. Go for a full diet of fruit + skins (blueberries excellent for the brain) and veg contains lots of fibre. And not the touted fibre from grains. Cooked apple with peel left on daily is said to heal holes in our intestinal lining (leaky gut) see British Dr Michael Ash. It is a downward health tragectory if have leaky gut. If have a leaky intestinal wall undigested too large food particles can get through into the blood stream and cause havoc within the body and immune system
Holes in the intestinal wall (think a pair of tights/ladders) can be caused by any medications - the contraceptive pill being notorious for. Obviously antibiotics as kill off the more vulnerable positive bacteria and so unbalances the microbiome and the LPS (bacteria waste from the more harmful bacteria then predominating) make the gut lining leaky
Consider a gluten free, better still grain free diet. Gluten is known to cause leaky gut in everyone not just coeliacs. But the one cell thick intestinal wal heals rapidly in a few hours. But if eating products made with grain flour throughout the day (Breakfast with toast or cereal , then a sandwich for lunch and pasta for dinner apart from the odd biscuit or sweet, its unbelievable how many chocolates contain gluten then the intestinal lining will never heal. See Dr Tom OBryan's work. You tube and his website thedr.com - videos on there also the last time I looked. There's also Dr Peter Osbornes work - specfically a list of which foods, additives and medications that you would never have known contain gluten. In addition all foods must be organic if at all possible as the insecticides /herbicides used in food production, that your daughter eats or drinks will kill the positive bacteria and organisms in the intestines and leave the harmful to flourish. Its common sense , it is what they were designed to do. However Glyphosate the predominant weed killer used everywhere (RoundUp) is disasterous for our health and will certainly amongst other destruction destroy the balance of your microbiome. See You tube interviews with Stephanie Seneff who's research has become invaluable And just to add that the European Court of Justice prosecuted Monsanto (the makers) for Crimes Against Humanity
So the diet is so crucial , less sugar the better - Products from flour like bread digest straight to sugar. Balance the microbiome with probiotics in addition to diet. And then consider the mitochondria needs fostering . They feed on the nutrients brought into each cell. Reproduction is key - lots of new healthy mitochondria! There is such a thing as the Cell Danger Response (Niki Gratrix - British Functional Practitioner/ outstanding work in the field of nutrition) If the mitochondria feel the threat of attack when the body is ill, it will switch into defence mode until all well again. The environment for the cell has to be deemed safe and conducive to provision of lots of nutrients or it may and will get stuck in the cell danger response. Good to research.
It has been found that mitochondria also feed on specific frequencies of near infra red light if exposed to, in addition to nutrients from food. Lots of health conditions inc thyroid / brain health / memory, so many have been found to be supported by NIR light. See Ari Whitten - Enery Blue Print . And see websites - red lght man . com and another, red light rising .co. uk to purchase the lights and info provided re health conditions
Also for memory brain health and health conditions get Vit B12 level checked. Ignore normal range. Different countries have different normal ranges - Below 500 would be a deficiency in Japan. Whereas in the UK it is far lower. My level a few yrs ago was 191 and I was told fine by GP even though I had health issues and lots of symptoms.
I hope all this helps. I have given you lots of names and pointers for research. If you want to look up any research studies go to Pubmed
Food for the Brain website is a fantastic resource for info about brain health . Below is a link to the website showing just one page. Tabs provide so much info x
foodforthebrain.org/brain-h...
She is a pastry chef by trade...gluten and grain free for her job is a bit of a headache in itself let alone what we eat. She tried to cut gluten but it didn't seem to make any difference if I am honest. She isn't big built but has gained a lot of weight for her. She was always 9.5 stone but now 10.5 stone. Think this has been missed for way too long x
Well definitely try the other stuff I mentioned - probiotics, prebiotics, organic and healing leaky gut and diet. See Dr Michael Ash video /info - stewed apple a day with peel on - obviosly no sugar (maybe a little organic honey or melted 85% or 70% and build up to 85% Green and Blacks organic chocolate. She will get a taste for not sweet after a couple of weeks
Then watch the Doctor Tom O'Bryan interviews on his website and you tube .
Then together - may have an impact - depends how much she wants to try getting better. In a few months , a year ?
You say she tried to cut out gluten before - well thats a great start, she was open to. Being a pastry chef is not great as can breathe the flour in, in the atmosphere but it's not the end of the world. She doesn't have to eat it ! Can get her own diet right.
Then try removing gluten. But the thing is , its not just gluten from wheat , barley etc . Like many may need to go completely grain free. Especially corn , so inc cornflour . Rice . There are 60 varients of gluten in the different grains.
Not thinking about losing weight when mentioning sugar . Sweet (which is all grains, grain breads) Sweet makes a great environment for the bad bugs - have to stop feeding them. No point going gluten free and eating the rubbish gluten free commercial products, as they are not healthy and full of sugar usually as in other grains like cornflour and starchy root veg flour. And of course the bottled canned drinks full of sugar. Difficult not to mention the hormone disruptors being absorbed from the pastic bottles and pastic lined cans
Maybe her problem is not gluten , just the bacterial /organism over growth in her intestines. So an unbalanced microbiome. But it amounts to the same thing. Cannot eat refined food that digest to sugar - like all the breads pastriespastas rice because they cause the sugary environment for the bad bugs to feed on ,grow and thrive displacing the good , healthy bacteria/organisms
And also you have to consider Glyphosate /Round Up - so will have to eat only organic. As the sprayed foodstuffs will just kill the more vulnerable healthy bacteria / organisms. Soy is 90% treated with glyphosate globally
Has she had a course of antibiotics in the last year or so - so killing off and unbalancing her gut microbiome
Have to consider all - small steps but need to tackle all at the same time. or its one step fwd and 2 back. But I do think the easiest approach at first is to eat everything totally 100% organic which is easy and take a really good probiotic and prebiotic. And totally cut down on refined foods that become sugar. Swap out foods instead of cereal or toast for instancehave a couple of eggs (essential for the brain too) Its amazing how really sweet toast smells to me I had never noticed before.
And to be honest, she is a young person. She needs to have the support of her family and so your household diet needs to be the same as hers. She's not ill , where she needs to be on a special diet. Her body has just shown up that the food /drink shes been brought up with has taken it's toll. Maybe with the help of antibiotics or medication It's a healthy diet she needs. Human beings never ate grains, in their whole history until 10,000 years ago which is a blip in the time line of our evolution . Add drinks high in sugar and glucose syrup and processed foods in the last 50 years, we shouldn't be surprised that we are ill.
How come Kelloggs since the 1930s managed to persuade parents that they should feed their children cereals every morning - could it be manipulation and greed for profit creating a market. Even I remember the advert - Go To Work on an Egg. Soon replaced by Ricicles are Nicicles and then in the supposedly healthier decades, we have to have Bran, bran, bran for fibre err no, fibre from fruit/ veg. Not bran that scratches out intestine/colon as moves through
Sorry, I'm off on one now when I think of how we have been manipulated and of what rubbish I brought my children up on by listening to the Govt food guidelines thinking that I was giving them healthy food x
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