hi can anybody give advice my daughter has just had a thyroid test and it was 169 we have been told her thyroid probably hasnt ever worked and she is lucky to be here.
any advice appreciated: hi can anybody give... - Thyroid UK
any advice appreciated
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lorraine01
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thank you and yes thats hat the doctor said, she couldnt beleive it and was full of appologies it hadnt been picked up earlier as we have only been to see locums, our doctors is closing down due to poor service. besides that my daughter is only 19 she is in full time college doing 3 a levels, she rides 5 horses daily and is a professional show jumper also she works on our yard at home and lokks after 9 horses.we think she is only here because she is so fit, her reproductive system has shut down and her digestive system is very poor and she has collapsed a couple of times over the last year and been in the doctors for feeling very low and exhausted i thought she was just being lazy i feel so bad she has been on thyroxin for 4 days now however she is only slightly over weight but gets very upset about this.
in reply to lorraine01
Lorraine, I was in a very similar situation as your daughter. I too was a show-jumping rider and used to be exhausted all the time. I used to do so much and then sit on a bale of straw to recover, told myself off for being lazy etc etc. It wasn't until I was late 30s I got diagnosed with Hashimoto's. Thank goodness your daughter has at last got a result.
I loved my horses and pushed myself to the limit everyday , I now realise to the detriment of my health. Sometimes I'd be up at 2am getting horses ready for a show, drive the lorry to the show, compete all day and then drive home again. Set the horses 'fair' for the night before falling exhausted in to bed. Perhaps doing this 6 days out of seven.
On the medical side I'm no expert but would advise you to ask for her to see an endocrinologist as a matter of urgency.
I wish your daughter good health from now on in and every success on the show circuit. I miss my equestrian life very much especially that special horsey smell.😀 'M'
I was 16 when they discovered I had a thyroid problem. I was always sick, weighed only 80 pounds, but it wasn't until I couldn't lift a glass to my mouth without severe trembling that they did a thyroid test. I was overactive. Back then they didn't give results. Just told you what to do. At 40, my thyroid reversed to underactive and meds stopped my weight gain but I can't lose weight. I am now 71 and still struggling.
I think it is deplorable that your daughter's doctors took so long to find her problem. Meds early on fix it immediately. Prayers that she is on track now and mends quickly. Is this doctor an endocrinologist? If not, find a good one. God bless.
Are you gluten free Bonnie?
My doctor tested me for gluten intolerance and said I am not. I feel I am and when I am gluten free I feel better and have less pain. But I am not strict enough. I unfortunately love bread.
I love bread too but I've found some good gluten free alternatives. Especially home baked and the joy is no kneading with gf bread.
Just because you don't show up for coeliac doesn't mean you are not gluten sensitive. If you have Hashimotos and have leaky gut then you don't want to be eating gluten. Read Dr Datis Khazzarian books/websiteand also Kris Kresser.
Potato gives me terrible pain you could try and avoid to see if makes a difference.
Kate, potatoes don't seem to bother me some dairy does. My endo tested me for Hashi last year and it was negative. I find more and more gf products and am using them. I need to make a better effort I've suspected leaky guy for years but my one doctor said "there's no such thing." I know there is. Thank you for your input. Are you in the U.K.?
Yes in the U.K. Glad you don't have Hashis 😀 It's a real pain!
I just saw a notification in a local newspaper about a workshop next week for advances in thyroid treatment. I'm going to try to go. I will let you know if I find out anything useful.
Brilliant, that will be good.
Where is it?
It's in New Jersey here in the USA. It's not too far from me so I hope it works out that I can attend.
Hi Lorraine - my 14 year old daughter went through a similar experience, and I also thought she was being a bit lazy! It was only when her face and eyes puffed up, and antihistamines didn't sort it out that she was tested and diagnosed with hashimotos. Now on 50mcg of Euthyrox daily, everything has improved a great deal, and she is once again her energetic self. I'm not sure wheter my daughter is or isn't gluten sensitive, but we've followed a gluten free diet since she was diagnosed - on the advice of someone on this forum - so far so good. I hope that with treatment your daughter gets back to her energetic self too - best wishes, Janine
thank you i will have them checked.
I think when children are young they really are not aware of health issues and just accept their body as it is, I hope your daughter is well looked after but I doubt that many children are given a check for their thyroid hormones.
I hope she sees a good Endo and if you have a name you can put up a new post asking for a private message to be sent to you with information. No point in going to someone who isn't too knowledgeable.
You are so right about children not being checked for thyroid problems!! My daughter was only 8 years old when I noticed changes in her. She wasn't growing properly among other things but no one could tell me why. She saw her pediatrician regularly. I read every medical book I could find, there was never a correlation made between her lack of growth and her thyroid. This was back in 1990, so I didn't have access to google, etc.
My daughter wasn't diagnosed until she was 10 years old and was never able to make up the height she had lost in those 2 years. Her pediatric endocrinologist said should have been 5' 6", but she is only 5' tall. It's a disgrace that the medical community doesn't pay more attention to thyroid problems.
Learn all you can about gluten free diets; connection to anti-biotic use; connection to over use of iodine (which includes bromide, flouride, and chlorine); bone broth diets (good for almost any disease); connection to inflammation producing over use of sugar(whatever it is you are using reduce it by 10 fold) and meat; non-GMO foods; connection to heavy metals. like mercury (found in fish), and cumulative / passed on by the mother during gestation.
Unless you are going to an alternative medicine Dr., get ready for a whirl-wind of non-effective / side effects prone medicine. As one who has tried it all for the last 20 years here in the states, the very best hormone replacement is Armour or Naturethyroid. Naturethyroid is to be preferred. (and yet, there are many Dr.s who refuse to prescribe) The Dr.s will tell you that there is no cure, but the alternative medicine Dr.s are curing Hashimotos, etc. by healing the gut. The cures are not magical, and they are not over-night, and diet is the key.
This forum is a wonderful place, so keep reading here. There are lots of very knowledgeable people who have likewise been through the mill at the hands of Dr.s who either can't or won't listen to the patient. If you take the time to read on a regular basis you will quickly see that the above is true. People repeat the same problem over and over, and likewise, those who have achieved a measure of success, write of similar remedies over and over.
I wish you and your daughter well. Here in the states more women have thyroid problems than men. I have taken my own unofficial census in any given group of women, to wit: "How many women here have officially diagnosed thyroid disorders?" When I first began asking that question 20 years ago - it was 1 in 4. Now? It is 1 in 3, and sometimes 1 in 2. I know of very little medical research that is asking that question. We are on our own with this - and it is within our reach.
Unfortunately, re Nature Throid etc, it will be near impossible in the UK for a doctor to prescribe as 'rumours' abound about NDT, so much so, that an American doctor wrote to the British Thyroid Association and the RCoP re False Statements and despite three yearly reminders for a response, none of them ever did. Now, in the UK, they have stopped prescribing T3 for those paients who were having it prescribed. which has caused immense stressful situations for patients.
It is now levothyroxine alone - so goodness knows where that will eventually lead to. I for one am very unwell on levothyroxine with repeated trips to the Cardiac Depts. I haven't had to go since being on T3.
This Levothyroxin is for me not nice to my body & seems to create fluid retention & raises BP although it seems Doctor s do not acknowledge this fact!
I've been doing my own research & this Forum has been particularly helpful. I was supposed to take Diuretics & a heart pill. However, I didn't believe this was necessary but mainly the problem of the Levothyroxin intake.
I got onto a Pharmacist who does Private Blood Tests under CityDoc, you can request what type of test.
My T3 came back perfectly. I also space out my Levothyroxin (Wockhardt) & keep just under the required amount.
I now have no fluid retention, I go for 4 mile walks, up steep hills to test my heart capacity. Do check out the sodium content in some LevoThyroxin. I believe some brands are rubbish. Oh! I am three years off 70, had level 4 cancer five years ago & am still on this planet.
Also, Inositol Hexaphosate is a brilliant supplement.
Hope some of this is useful.
Yes, levothyroxine caused for me, way more problems than any it might have treated. Yes, if I had not been younger when the "Thyroid Storms" caused by overdosing / sudden over-abundance of Thryoid Hormone - I do believe it would have caused a heart attack and killed me.
And yes, similar lies, rumours, and deception abound here in the states. One Pharmaceutical Giant actually sent a written statement to me in the mail, to the effect: "Armour Thyroid is being discontinued. Please see your Dr. for a different prescription." My response? I called the Laboratory that made Armour Thyroid asking them to either confirm or deny. They denied any such discontinuation. Further, when asked if they would supply a phone number so that the Lab could speak to the Pharmacy - they happily complied - ha! (How many would have blindly done has they were instructed?!)
A great alternative Dr. here (Dr. Wootan and other clinical Dr.s) helped me to understand that Thyroid Storms caused by Levothyroxine had to do with the autoimmunity factor of Hashimotos (which I do have). That if for some reason, my immune system was distracted, say by fighting another disease, then my natural hormone would get through, combining with the Levothyroxine, and walla, overdose / Thyroid Storm like symptoms (wildly beating heart, dry mouth, dizzy, sudden weakness, nausea).
Armour Thyroid, Naturethyroid, (I've noticed that this is often referred to as T-3 by you guys on the other side of the pond), all of these natural sources work with the immune system, the great amazing body knows what to do with these, taking what it needs in a flexible way. Ahhh, but here in the states - the cost of these natural substances, yes from the pharmacy, are less than the cost of aspirin. Which brings us to the crux of the rumors, mis-information, and compromising of the Hippocratic Oath. And more is the pity, as they say.
Who has the time to do all this studying? Who has the time to eat all the right foods that enable the patient to "heal thyself"? None of us (which, on it's face, sounds ludicrous!) But that is what we have to do. Or, seek out and support the alternative MD's, etc. who daily face the "Quack" language, and efforts to run them out of business. They also listen and heal the exponentially increasing throng of those suffering auto-immune thyroid disorders. May we too, keep listening, sharing, and soldering on to better health.
Latest discovery for great relief for my own thyroid Disorder: 5000 mg (daily) of Vitamin D.
Thanks for responding. Misinformation has been passed through the Big Pharma companies about Armour etc as being 'incompatible', mind you they paid out hundreds of millions $ to doctors and endocrinologists to not prescribe NDT and only prescribe levothyroxine. I believe they also foot the bills for Endocrinology Conferences even today.
Blatant lies have been told and rumoured. One of your lovely American doctors who wouldn't give in and resigned his licence in order to carry on treating patients as he was taught and also wrote to our BTA and RCoP and despite three yearly reminders they never did respond and Dr Lowe died of an accident. He was also an Adviser to Thyroiduk.org.uk. He also invented his own NDT to not require a prescription.
We refer to Armour etc as NDT (natural dessicated thyroid hormones). T3 is liothyronine alone, so doesn't have the full range of hormones.
thyroidscience.com/Criticis...
As they say, education, education, education and many on this forum have recovered their own health through the support/help of this forum.
web.archive.org/web/2010103...
What a wealth of research! Thank you so very much. I will share this even with Dr. Wootan, and a couple of friends with Fibromyalgia. I did not know that fibromyalgia was related to / treated with thyroid hormone. Great work!
Dr Lowe who unfortunately died through an accident was hugely missed by many. Also CFS and Fibro were only named about 10 years after the levo and blood tests were introduced. He was also a scientist/researcher. He also said that fibro patients were thyroid hormone resistant and only T3 improved their condition.
web.archive.org/web/2010081...
An excerpt from the above link:
Big Pharma Hits Pay Dirt: Fibromyalgia Patients Targeted as a Hugely-Profitable Drug Market. If you're a fibromyalgia patient, you're now targeted as a rich source of revenue from drug sales. Bookmark this page to soon read linked documents. These show the concerted efforts Big Pharma and its affiliates are devoting to you as a mother-lode of financial profit.
Some links within may not work as most are now archived.
web.archive.org/web/2010103...
This is absolutely ground-breaking and golden work. HealthUnlocked is truly just that. Thank you so much for this site, and for these archives - the links worked beautifully. You are such a dear. We are going to find the cure. We are already making inroads.
There is one thing that I have been hesitant to share, because....it's a product. Not mine, not anything that I can possibly profit from - only in the joy of perhaps helping others. It's called Digestacure (by Pristine Neutraceuticals). It worked for me - along with the dietary changes. Here is the website: digestaqure.com.
Get her thyroid antibodies tested too(checks for Hashimotos) differs from hypothyroidism as auto immune and very common.
Mary Shomon books and website.
Read books by Dr Datis Khazzarian
Kris Kresser website
Auto Immune Recovery plan by Susan Blum is a good read too if she has Hashimotos.
Poor her she must be feeling dreadful. You've come to the right place for learning.
GP will only treat her so far. The rest of learning and treatment will be from here.
hi I have an auto immune disease which i can get very unwell from i have had it since i was about 8 yrs old im now wondering if this may have anything to do with my daughter, i will ask the question, thank you all so much.
If you are in the UK lookat Thyroid UK and Patient Thyroid Advocacy sites for detailed information.
helvellaAdministratorThyroid UK
There are other possible explanations of very high TSH.
1) She has antidbodies to TSH itself. This makes some TSH tests read much too high.
2) Her pituitary is pushing out an inappropriately high level of TSH.
Both of these can occur alongside a thyroid that that isn't working properly.
Does she take any medicines or supplements at present?
Meant to say, absolutely must get FT4 and FT3 tests.
Also meant to say:
In my opinion, once you cannot produce much thyroid hormone at all, the TSH level is likely a measure of how much TSH your pituitary can produce rather than how hypothyroid you are.
I suspect (again, no proof) that long-term hypothyroidism does tend to increase the amount of TSH you can make. That is why we see reports of pituitary hyperplasia.
SlowDragonAdministrator
Biotin (in most vitamin B complex) can affect thyroid blood tests, possibly giving erroneous TSH result. Though it appears to lower TSH not raise it.
endocrinenews.endocrine.org...
Interesting about Biotin. I have been taking it for about 2 years now and I don't believe it has done much for my hair nor nails. I am going to stop taking it and see if there is any (negative) change. If not I'll drop it for good, no use introducing something which can interfere with your endocrinology when it's all so complex all on it's own.
Apparently it is quickly out of your system, from thyroid testing point of view. Just need to stop supplementing 3-5 days before thyroid blood test.
Apparently, even being in the presence of rodents can cause an elevated TSH reading. Sounds strange, I know, but just thought I'd mention it as she is outside in the open with horses a lot so it might be a slim possibility that it is higher for that reason.
I have read this in medical papers on line but I'd have to find it again. I was reading about human anti mouse antibodies being a cause for high TSH readings in cancer patients, and came across this. helvella would probably know where to find it. I know it may seem unlikely, and I'm not saying I understand it, but surely everything is worth considering if it becomes a mystery, I hope she gets the help she needs soon
The antimouse antibodies was definitely an issue being discussed (very seriously) a while back. Cannot remember the outcome but will try to find out.
(Almost typed "Anita mouse" - sounds like a children's story... 
🐭 )
This is not the one I was reading about rodents, I'm quite sure that was the BMJ or pubmed but still, worth reading as it's even closer to the possibility verywell.com/false-positive...
So having read this, it is paramount that, like helvella says, she should most definitely be tested for Ft3 andFt4 as soon as possible as she could easily have been wrongly diagnosed and therefore could be in danger taking Levothyroxine.
Sorry if that sounds alarming, but that is how I am reading it on that link, considering that she is constantly around animals.
I agree with you.
TSH means nothing on its own. It has the potential for identifying significant hyper- and hypo-thyroidism - if the pituitary is working well and there are no other factors. You need to be sure, though, and that can only be achieved with FT4 and FT3.
Start keeping a diary of info. Symptoms. Blood test results. GP will no doubt say - this is easy - just start her on levothyroxine - it's a straight hormone replacement, does nothing special, no side effects etc etc. If she's lucky that will be the case. If not it is helpful to have a record of the situation.
My daughter has just turned 13 and started being unwell in Feb /march last year was diagnosed in Nov with hashimotos but has many other symptoms that just don't fit ,her endo's words ,and I now think the HPV vaccine she got in Jan last year may have something to do with it so many similar cases out there we are having synacthen test on Thursday waiting to see gastro doc might be worth looking at x
That's interesting because my daughter had her HPV vaccines approximately 6 months before she was diagnosed with Hashimotos too. Also at 13 years old. i wonder if Hashimotos symptoms come up around puberty which is a similar age to when one might consider the HPV vaccine, or if there is a connection between the HPV vaccine and Hashimotos.....
I only made the connection about a month ago and when I looked into it there are so many stories of girls and boys (in us)being injured by this vaccine I have only read some of it but was shocked at how similar stories were to my girls,apparently all vaccine causes an immune/antibody response as it's supposed to,most of the people affected have developed an autoimmune disease,not always hashimotos ,some much worse ,there'll be a lot more in news about it over coming weeks /months,and mr trump has just appointed RF Kennedy jnr to investigate the safety of vaccine I'm not anti vaccine but the more I read about HPV I could kick myself for allowing her to have it x
My daughter also became unwell 2 weeks after her third HPV vaccination 
How is she now ? My daughter hasn't been in school since September as she's too ill ,she only had first ,I have reported all her symptoms as adverse reactions via yellow card and joined the uk action group have you reported it?xx
She had glandular fever 2 weeks after jab in Sept 2014. I believe she got this because her immune system was compromised by the vaccine but GP insists it's unrelated. She has made a gradual and steady improvement with lots of dietary interventions and supplements so I'm hoping that in time she will recover fully. She has CFS and low adrenal function (and low nutrient status) but does not have Hashimoto's. Good luck, I know how hard it is when your child is ill.
Yea most gp's will say that but to be fair I think unless you go and read lots of other cases and what this vaccine has been accused of doing by vaccine experts, pathologists, etc they don't make connection (or won't)my gp is good I hope your daughter continues to improve x
How old is your daughter?
TSH=169 sounds catastrophic! Make sure you have a full thyroid panel which includes the Hashimoto's antibody checks. I suggest TSH/FT3/FT4/rT3/TPOAb/TGBAb. With bad digestion, she is undoubtedly nursing multiple nutrient deficiencies.
I would also monitor her via blue horizon thyroid checks ontop of her normal nhs tests as they don't always test the correct things and she is very young. You need a speedy recovery (as speedy as possible) so she can get some quality of life back. Of course it's down to personal choice and affordability but I wouldn't rely fully on just her doctor getting her well if she has been left for so long. Best way is for her herself to learn as much as possible about it and then make better choices about her care in the long run. Get copies of all her results with ranges and keep a record in a file yourself also. Keep posting on here. It is highly likely that she is deficient in many other things also which need to be looked at. I had a tsh of 40 and felt like I was dying so 169 is so shocking! Hope she gets better.
they are correct it`s way to high and that can cause heart problem mine was just 36 and was told they couldn`t believe i could function at that it wasn`t really scary high i take 60mg of armour my doctoc tried to get it to 75 mg that put my tsh 4.0mlul that was suppose to be normal but not for me was so tired i couldn`t do what like to do so i asked i could stay at 60 and my tsh came down to 6.24 and that is normal for me and the doctor ok with it ask for the armour thyroid replacement it wont make you feel as bad as the synthetic
linda
As your daughter's digestion is poor, I would recommend she tries the Paleo Autoimmune Diet in the short term which cuts out the most common food sensitivities and maximises nutritional content:
thepaleomom.com/start-here/...
Foods are gradually added back in as digestion improves.
It sounds like she's super busy. Plenty of sleep (aim for 9 hrs) and making time for rest and relaxation are also important for her recovery.
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