Thyroid issue? not diagnosed

[Rootytoot80]

Hello everyone, I want to introduce myself. I apologise in advance as this is going to be a very long post. I am a 37 year old female and have been suffering with a number of non specific symptoms since I was about 13. As soon as i hit puberty the symptoms started. I have been backwards and forward to the Drs more times than I care to mention until it got to the point where I couldn't bring myself to go again because I felt like a nuisance. To be honest i wouldnt be here any more if not for the love and support of my family. A very quick (believe me!) history:

Prior to puberty I was very athletic, playing football, netball, rugby and Hockey for the school teams. I then succomed quickly to these symptoms, that occur on a daily basis and to a degree where it impacts greatly on quality of life.

•Unable to lose weight despite diet and exercise – inappropriate weight gain

•Feeling the cold when others are hot

•Not just tired but exhausted even after resting.

•Constantly yawning

•Never feeling refreshed after sleeping

•Aching and stiffness in joints

•Chronic pain and aching in muscles and joints - Tight muscles, no improvement with exercise after 6 months its becoming more and more debilitating

•Weakness in wrists and ankles, both will just give out for no apparent reason – shooting pain in tendons.

•Shooting pains up my shins

•Speech is affected, slurred or getting words wrong

•Constant feeling of being run down/under the weather

•Hair loss, coming out in clumps. hair also very brittle

•Brittle nails

•Dry flaky, blotchy skin

•Facial puffiness

•Face feels like its burning when rest of body is cold

•Very heavy menstrual cycle and extremely painful periods which have caused me to pass out in the past during my teenage years and 20’s

•Very sensitive to the touch - feels very painful and bruises easily

•History of ovarian cysts

•Depression – differing factors

•Restlessness – especially in the evenings/in bed. Feels likes itching in my veins

•Pins and needles in hands, feet, legs and face

•Mood swings, weepy then angry for no reason

•Irritable and needing isolation

•Low self esteem

•Cognitive function impaired: -disorientated, foggy, lack of concentration, very poor memory, forgetful

•Lack of motivation

•Non-existent libido

•Symptoms of asthma

•Very dry/gritty eyes which actually feels painful – tic also for prolonged periods lasting weeks. all clear at the optician

•Feel very light-headed and dizzy on a daily basis

•Headaches, not inside my head but all over my scalp

•Constant feeling of swollen glands in my neck - like fighting off infection

•Red patches appearing on my neck and chest

•Recurrent sinus infections (was diagnosed with chronic rhinitis as a child)

•Heart palpitations

•Tremors and shaking

•Symptoms of IBS, stomach cramps, chronic diarrhoea, undigested food passing through

•Insomnia

•Breast pain and pain under armpits

My weight is a concern because it is having a direct effect on mental health and feelings of self-harm. Diabetes and other weight related diseases are a massive concern, strain on joints, etc as I strive to be as healthy as possible.

I have been trying to treat symptoms but not getting to the bottom of cause. I am determined, tenacious and strong willed. Applying myself has never been an issue, the issue is that my efforts have been ineffective. Previous weight loss was only managed when on a 500 calorie a day diet with purging after each meal as I became more and more desperate.

I have been offered gastric band surgery – however, I declined this as my diet and lifestyle is not the issue. I already eat from a side plate with children’s cutlery, all food intake is documented in a food diary. My diet is whole foods, non-processed and sugar free. I ensure to have a balanced diet including when on vegetarian/vegan diet to include foods which provide the full spectrum of nutrients. I am however, back on meat for the time being.

Have also done the following, just as a few examples:

•1500 calories a day

•1000 calories a day

•800 calories a day

•Cutting out carbohydrates

•Elimination diet – this was a full elimination diet rather than excluding one food group at a time

•Varying supplements, calcium, vitamin D, B12 injections, Magnesium, Zinc etc

•Low GI food

•I swim 3-4 times a week – averaging 50 lengths

•Gym 2-3 times a week – averaging 45-60 minutes. Both cardio and resistance training

•I completed a marathon (walking) in July - this left me in agony for 2 weeks after and even now still feeling after effects

•given up smoking

•alcohol consumption limited to 1 night per week if I have any.

•Have been vegetarian/vegan

•fasting 5:2 (during this I was limited to 500 calories per day for 2 days and on the other 5 days had a sensible diet of 1500 calories...I still gained weight)

•Whole food plant based diet- I do not eat ready meals or processed foods. I make all of my own food from scratch and do not eat sugar.

•Tried to increase metabolism as I wondered if my metabolism was slow. I feel sick in the mornings and therefore do not tend to eat breakfast until I have been up for a couple of hours. I wondered if this had affected my metabolism, therefore I introduced eating breakfast over a few months. My weight gain increased massively despite only having fruit, porridge or cereal for breakfast.

•Hypnotherapy - i tried this as my physical and mental health his has been massively affected by the way i feel. It was so helpful in terms of long term mental health issues, brought on by bullying etc. The residual issues are now related to my present weight and health issues.

These symptoms are not psychological and are not self-induced. I understand that it is not something that can easily categorised, however, these symptoms are real and very often severe and are impacting on both my day to day life and mental health. I have explored many avenues and spent money i can ill afford in the pursuit of trying to figure out why I feel the way I do. Although some benefits have been found via these methods, they have not significantly reduced my symptoms or explained the cause. My mum bless her pointed me in the direction of this site in her pursuit to find out the cause of my "illness". during one Drs appointment when I was younger the Dr sent me out of the room and suggested we should both have psychotherapy as they thought she was projecting ideas of illness onto me.

Sorry for the ramble, but the latest is that I went to the Drs last week in a last ditch and desperate attempt to find out what was wrong. After being on here, I went in to discuss the possibility of it being a thyroid issue or if not what else it could be. Having worked in a hospital, I know that some Drs can be funny about going in with a self diagnosis so I went in to discuss possibilities and ask for their opinion. My Dr still took offence and I was left feeling utterly humiliated. I was told that my symptoms are what herself and other people feel on a daily basis, that some skinny people try to put on weight but can't and that my lot in life was to be overweight and that I will "have to come to terms" with the way i look as there is nothing wrong with me. I tried to stress that my symptoms aren't "day to day" and that they are severe and debilitating but was brushed off and made to feel like a trouble maker. I was met with a sigh and begrudging given a blood test which I am waiting on results for. I tried to mention other tests apart from just TSH and was given a lecture on the damaging information been touted on the internet about other tests so I will only get the basics. I am intending on getting private tests done but thought I would come here for advice first to see if it was worth doing.

My previous results are as follows (year followed by result)and I will post my most recent ones once they are in.

serum TSH: 2014- 3.2, 2015 -3.9

Free T4: 2015- 15.7

Serum Folate level 2015- 8.7

Serum Ferritin Level: 2015- 25

Vitamin B12: 2015 202

Sertum Vitamin D level: 2015-42.7

Serum Calcium level:2015- 2.32

corrected serum calcium level: 2015-2.19

cortisol: 2015- 1580

Any advice would be very much appreciated. I'm not even sure it is anything to do with my thyroid, but I need to find an answer. Thanks for reading x

[Nanaedake]

Hello Rootytoot80, Have you been tested for thyroid antibodies? They will show in blood tests as something like TPO thyroid peroxidase antibodies and TgAb Thyroglobulin antibodies. You can't be sure that some of your symptoms are not thyroid related until you rule out thyroid antibodies. Also, were your thyroid blood tests done first appointments in the morning and fasting?

For nutrition if you're concerned about future diabetes see diabetes.co.uk/diet/low-car... for advice on low carb high fat (good fats) diet.

[Rootytoot80 in reply to Nanaedake]

Hi, not been tested for antibodies.. that is something I intend to get tested independently for as my dr is reluctant. My diet doesn't really concern me...as eat spectacularly well! however, I am concerned about weight related illnesses! Thanks for your reply x

[Hidden in reply to Nanaedake]

Even if you dont have antibodies you might well still have something like secondary hypothyroidism or in ability to convert hormone store to active thyroid hormone. The best way to really find out is to take your temperature before you get up on a morning for a week or 2.

[Emyloulou]

Just a very quick reply because I’m off to bed and they’re far more experienced people that will be along, probably tomorrow

serum TSH: 2014- 3.2, 2015 -3.9 things change year on year so these need repeating or no one can give you an answer.

Serum Ferritin Level: 2015- 25

Vitamin B12: 2015 202

Sertum Vitamin D level: 2015-42. All of these weren’t great but again need repeating

cortisol: 2015- 1580 this seems way to high to me and could well be why you have problems with your weight. That is based on the range of my most recent cortisol which was 120-600

Ultimately until you have upto date blood test results you won’t know if you have an issue with you’re thyroid or indeed anything else

Sorry that didn’t help too much x

[Rootytoot80 in reply to Emyloulou]

Thank you for your response. It has prompted to mention that because of my high cortisol level i was tested for cushings but it came back negative. My dr said that in that case it must have been a one off spike in levels.

[greygoose in reply to Rootytoot80]

What you need, is not a test for Cushing's, it's a 24 hour saliva test. Even if tests for Cushing's and Addison's are negative, you can still have adrenal problems, only doctors won't recognise the grey areas, for them, everything is black and white!

Just a comment on your TSH results - don't need a range for those - a TSH over 3 means a thyroid problem. It is not 'normal' to have a TSH of over 3, a 'normal' TSH is around 1. But, doctors go by the ranges, and most of the ranges are unrealistic. If you are in the UK, they like your TSH to go over 10 before they will diagnose!

But, the TSH is only part of the picture, you need your FT4 and FT3 - the actual thyroid hormones - tested as well. But, when you've had them done, and post them on here, please do put the ranges, because they differ from lab to lab.

I would also say that you need to eat more, not less. Low-calorie diets exacerbate thyroid problems, which make you put on more weight, not lose it.

[melville999 in reply to Rootytoot80]

if it was a perfect world or you had access to as well as sorting out thyroid hypo or not it would be good to get updated pelvic scan check if you presently have any ovarian cysts but ideally scan adrenals and pituitary gland in brain too.I admire how you have got through all this.you need to take gentle exercise when you feel like it and not beat yourself with diets.There is always an answer. Remember 'everything will be ok in the end,if its not ok its not the end'

[shond2015]

Hi Rootytoot80@

Really so sorry to hear how ill you are. Many symptoms you describe are indeed quite typical of auto immune thyroiditis. I am sure you have already done an extensive research about your symptoms but one book I can't recommend highly enough is "your Thyroid and how to keep it healthy" written by Dr Barry Durrant-Peatfield. (purchased on Amazon) His writing is so easy to read and digest and is without any technical jargon (or constant referencing) so you can really concentrate on what he is telling you. I would liken his style of reading to that of David Attenborough...in other words....you can easily become enthralled with his knowledge, expertise, compassion, empathy but above all his delivery, for your condition.

I went to see him 3 weeks ago and can only say how thankful I am to have had the privilege of benefiting from his wholly natural, holistic approach to my condition. I hope others on the site are able to help out with your results etc. Best wishes, Shon D

[hellybaybee]

Hi, do you have the ranges for your results (the numbers in brackets) also, when you mention b12 and vitamin d what is being measured - could you give the full description on you print out? Both sound like they are low but need to know what is being measured though some of the symptoms sound like b12 deficiencyto me. I agree with the above about getting antibody test too (you also need T3). Tsh isn’t the best measure as it’s so changeable but Your tsh is a little high - I think in the us, anything over 3.0 is underactive (correct me if I’m wrong). I was diagnosed by dr skinner when mine was 3.6 and I felt god awful. I had been doing my degree and was falling asleep all the time - didn’t go out like my flat mates, I just couldn’t! How I got through it I’ll never know. NHS won’t diagnose you until yours is at 5.0 at least. A significant reason for this is that it is underfunded(disgusting really when NICs are expected to raise 130.3 billion over 17/18 - sorry, I work in tax so this bothers me!) and thyroid medication ultimately leads to free prescription. There also seems to be a bit of a witch hunt of drs who will diagnose patients with hypothyroidism. It’s all very backwards, Soon they’ll be treating us with leeches. I’m afraid you have to be persistent unless you can go private and then I would go to a recommended doctor.

[hellybaybee in reply to hellybaybee]

Oh and also, get your tests very first thing in the morning for thyroid problems- it makes a difference.

[SlowDragon Administrator]

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Low vitamins stop thyroid hormones working so that then thyroid tests appear almost normal, but are actually hypo

So getting low vitamin levels sorted is first step

Always get actual results and ranges on all tests. Ranges vary with every lab

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

[MarthaF]

If you can't face Drs again I would recommend private testing if you can afford it and post the results on here, blue horizon, medichecks, thyroid 11 is pretty comprehensive. It's easy to do with a finger prick kit at home. Sounds like you've been through the mill. Good luck.

[Rootytoot80]

Here are my previous years results with ranges. Tests were taken at 8am. I am expecting repeat results next week. Unfortunately they wouldn't test for antibodies, T3 etc

Serum TSH; year2014 =3.2 year 2015= 3.9(0.27-4.2 mlU/L)

Free T4Serum free T4: year 2015= 15.7(12-22)

Serum Folate levelyear: 2015= 8.6 (4.6-18.7ug/L)

Serum Ferritin Level:year 2015= 25 (15.0-150 ug/L)

Vitamin B12; year 2015=202 (191-663 ng/L)

Sertum Vitamin D level: Year 2015 =42.7(<30 nmol/L high dose supplement needed 30-50 nmol/L supplement needed, 50-125nmol/L No action needed)

Serum Calcium level: Year 2015= 2.32(2.2-2.6 mmol/L)

corrected serum calcium level: Year 2015= 2.19(2.2-2.6 mmol/L)

cortisol:Year 2015= 1580(171-536 nmol/)

Thanks

[bluebug in reply to Rootytoot80]

Do you have a full or complete blood count from the same time? If so print the results and ranges This is just to see what type of iron deficiency you may have.

[Rootytoot80 in reply to bluebug]

Tests from 2015

Haemoglobin concentration 131g/L (110.0 -147.0)

Total white blood count 6.6 10*9/L (3.5-9.5)

Platelet count 287 10*9/L (150-400)

Red blood cell count 4.32 10*12/L (3.75-5.0)

Mean cell volume 93.1 fL (80.0-98.1)

Haematocrit 0.402 L/L (0.32-0.43

Mean cell haemoglobin level 30.3 pg (27.0-33.0)

Mean cell haemoglobin concentration 326 g/L (335.0-370.0) notes say below range

Neutrophil count 3.53 10*9/L (1.7-6.5)

Lymphocyte count 2.46 10*9/L (1.0-3.0)

Monocytes count 0.47 10*9/L (0.25-1.0)

Eosinophil count 0.11 10*9/L (0.04-0.5)

Basophil count 0.02 10*9/L (<0.25)

[Flower4445 in reply to Rootytoot80]

Doesn't seem like anything wrong with iron to me

[bluebug in reply to Rootytoot80]

You didn't have iron deficiency anaemia then but your ferritin level wasn't good. Low ferritin levels are frequently proceeded by iron deficiency anaemia. You need to have a full blood count as part of your repeat tests. If you can't afford it get the thyroid 11 privately and then ask your GP for the full blood count if your ferritin level is lower than what it is there.

Also your vitamin D level is too low. You want it over 75 at least and preferably over 100 but lower than 150. Were you given any supplements for it or told to take any?

[humanbean in reply to bluebug]

Low ferritin levels are frequently proceeded by iron deficiency anaemia.

I think that should say "Low ferritin levels are frequently followed by iron deficiency anaemia."

But it is also true that serum iron can be low in range or below range while ferritin is in range.

A full iron panel (finger-prick or venous blood sample) would be helpful :

medichecks.com/iron-tests/i...

[Rootytoot80]

I am intending to get full tests done privately. Thanks to everyone who has taken the time to read and reply x

[Mamapea1 in reply to Rootytoot80]

Your mum was absolutely right to point you towards this forum ~ please stay with it ~ many members have had a myriad of thyroid related problems, and you will get excellent help and advice.

I must say I think the Dr suggesting your mother 'projecting' your illness onto you is both bizzare and slanderous! I thought I'd heard it all! They will go to extreme lengths, it seems, to cover up their inadequacies ~ disgraceful you have been left like this with no hope or answers.

Please don't over exercise or continue with calorie restrictions ~ it won't work no matter what. Excessive exercise will deplete T3 and leave you exhausted and ill. You haven't got results for this yet, but it could be low already. They have managed to get you to believe that the weight gain is your doing, and it is not ~ something is out of sync and you have an illness. Do remember though, not to consume any PUFA oils ~ sold as cholesterol lowering, but bad.

So glad you're doing private tests, members will advise when you get them ~ go for as many as you can. Full thyroid and vits with reverse T3, cortisol saliva, and as you say your problems began at puberty and you have breast pain, I would get sex hormones tested oestrogen etc and prolactin ~ look at tests available on here, read info/studies to see if anything applies to you. Oestrogen levels can affect thyroid too.

You may well have to go it alone if Drs continue to dismiss your symptoms, but at least you might get some answers, they have obviously stopped looking for them! Disgraceful! No one has a list of symptoms like that for no reason.

Warmest wishes and good luck Mamapea x

[Sashagurrey]

I suggest joining my fibro doctor.com on Facebook he's from US and will defo tell you that you need meds for those results and he sells all natural supplements or advises what you need and how to go about it .. good luck .. all sounds very familiar I'm dreading it but I'm going to try gp one last time in new year for proper testing ( armed with doc murphree book beating and treating fibromyalgia ) he treats hypothyroid and other issues too.. if not I'm going down the private route too I'm dx with fibro but am CERTAIN I'm hypothyroid too and am now unable to work and "disabled " but it could all just be as simple as thyroid issues. Dr murphree also explains why some medications don't work ( it's complicated ) maybe look for his book at library or join Facebook page ( it's all free info unless u want private phone consults ) good luck x

[Clutter in reply to Sashagurrey]

Sashagurrey,

If you've had thyroid levels tested write a post of your own and post your recent thyroid results and ranges and members will advise whether or not you are hypothyroid. If you have results for ferritin, vitamin D, B12 and folate post them too.

[marigold22 in reply to Sashagurrey]

Sashagurrey Please do not confuse this poor lady any further by suggesting she join your Fibro doctor. She needs a clear step by step procedure to work her way through each step of recovery. It's a very complicated illness, and there are a myriad of complicated steps to undertake. She needs to go down the private route, particularly as her mother (and family?) are behind her. Apologies for this reply of mine, but - each case is individual to that person. We cannot on this forum, presume someone asking for urgent help is the same as us.

[Sashagurrey in reply to marigold22]

Ok I understand but that is exactly what doctor murphree does.. step by step but yes we are all different in our approach and needs I totally understand that.. I've made a few changes and it has helped me so o want to pass it forwards and try to help others as it is very confusing and frustrating and even 💔 This illness..best wishes to everyone sorry if I offended anyone ( I'm not affiliated at all with doc murphree but def think his book is a godsend to me and makes sense if a little hard going at times with fibro fog)

[rosie61]

your b12 level is quite low. Some of the symptoms I had especially the itching on the inside as I put it. This year I had to have 6 b12 injections over two weeks and have to have them every three months, my symptoms start to come back a little earlier than that. Have a rwad up on b12 deficiency your body may not be absorbing it

[Gatt1951]

I had same problem I used to lose weight very easy ,and than it started getting hard to lose it and one day I went and bought diet dablets they are called duramine and they never made me sick before but I was sick like a dog when I took them ,I started vomiting while I set on the toilet with diiaria and my husband put water on my face with a face cloth so than I stopped the tablets I was always arguing and crying for no reason at all I used to find it hard to start doing house work and when it’s time to clean I used to fight with my husband get the car and go out till midnight I come come start trouble and wake every body up than I could not even swallow my saliva than I went to see the doctor took a blood test and there it was low thyroids so the doctor put me on oroxine,thyroxine tablets I take 100 micrograms for 5 days and 50 Saturday and Sunday and I feel a lot better I hope u will feel same after u start ur treatment love I hoe to god it will work for u I know how u are feeling it I’d owful

Best regard

Ur friend Evelyn Gatt xxx

[melville999]

lots of advice above.Sounds like in addition to thyroid and cortisol problems maybe you have a metabolic resistance in combination with polycystic ovary syndrome(and fibromyalgia).Am disgusted at medical attitudes to you and your mum.Dieting per se isn't ever an answer tho cutting out gluten can help thyroid and joint issues.Dont eat the gluten free substitute goodies (cakes etc)many very very high fat.but you probably don't anyway.the Beyond chocolate' book and programme anti diet may help as you may end up eating more but losing weight.you rightly focus on health risks but subconviously your mind is probably berating itself and the self criticism will stimulate fight and flight response to gain weight.try the above book because the approach it takes may be a helpful key.best if luck

[marigold22 in reply to melville999]

melville999 You are mentioning polycystic ovary syndrome. I don't think this poor woman has mentioned her ovaries? Please do not confuse her any more than she already is. As I said to Flower4445 Please do not guess.

[melville999 in reply to marigold22]

I am not guessing.This lady has listed ovarian cysts plural.read please.I am not guessing.maybe I have some training you don't have.I request you are not rude please.and also innacurate

[marigold22 in reply to melville999]

She needs to get her adrenals, thyroid and thyroid antibodies sorted out first, then her iron, vitamins and minerals. With due respect.

[marigold22 in reply to melville999]

melville999 I was not being rude. I was stating important facts. I was born with half a uterus and only one ovary. As a teenager I got incredible pain when ovulating. But I had to forget all that until I got my endocrine illness sorted. I would think that this lady needs to get her endocrine illness sorted before looking at her ovaries problem. Ok, agreed, if she has the strength, she could overlap those two activities, but if she is low on energy, she needs to prioritise her thyroid, adrenals, thyroid antibodies etc I will not be returning to this post, and will not be on this forum at least until Monday evening.

[melville999 in reply to marigold22]

you we're factually inaccurate stating 'i don't think this poor woman mentioned her ovaries'incorrect

[melville999 in reply to marigold22]

as you stated earlier 'we cannot on this forum presume someone asking for urgent help is the same as us'

[Sashagurrey in reply to marigold22]

Well said from someone who knows.. surely the reason for these groups is to pass on invaluable knowledge? I wish I knew 5 years ago what I know now. Then maybe I wouldn't be stuck at home after losing a job in child protection I'd worked at for 30 years.. best wishes and gentle hugs and understanding for everyone.. if someone posts they are obviously looking for answers and not just from a single minded person ( not being rude but stating a FACT)

Have a nice day everyone and focus on any little positives or pleasures you find however hard it may seem x

[alchemilla12 in reply to melville999]

having ovarian cysts is NOT the same as polycystic ovarian syndrome

[melville999 in reply to alchemilla12]

yes,I know that.But given the lack of real,accurate definition by medics of this ladies various real and serious physical medical problems,it is worthy of thinking about especially in the context of metabolic problems.I am sure in the days of the internet it is easy to look each of these things up.

[Sashagurrey in reply to melville999]

I'm glad someone else said this.. surely knowledge is power and putting down everyone's suggestions is not helpful!! As per my post u told me this lady doesn't need yourfibrodoctor.com

Maybe you should read his book as he covers everything you mention below.. btw are you medically trained to know marigold22 ??

[melville999 in reply to marigold22]

marigold,the symptoms appeared at puberty.This is a clue to look at those organs' in ones body that at puberty start to wake up/change.ovaries being very important.

[Sashagurrey in reply to melville999]

Great reply!! Well said

[Flower4445]

I don't think its Hashimotos at all

[marigold22 in reply to Flower4445]

Why are you guessing? She's still ill. You shouldn't guess. You are confusing her

[Clutter in reply to Flower4445]

Flower4445,

90% of hypothyroidism is caused by Hashimoto's. How can you think it's not Hashimoto's without seeing antibody levels?

[TSH110 in reply to Flower4445]

Flower4445

And exactly what leads you to that conclusion? TSH is elevated but antibodies have not even been tested. Many hypothyroid symptoms are evident.

[Hidden]

Bless. We do need to see ranges ofblood tests for the most part. A tsh of above 3 would lead to a diagnoses of under active thyroid in a lot of other countrys and you would be treated. Your B12 is in your boots. I am unable to remmber ranges for ferritin and Vit D but your symptoms whatever your blood tests say are screaming thyroid issues and you need some thyroid hormone replacement as well as some B12 ( probably need injections but it maybe worth you trying sublingual lozenges first). The same happened to me. I came on this forum about 4 years ago at the end of my teather with weight issues and ongoing health problems having become ill as a teenager. I am now 50, so you are not alone, lots and lots of people go undiagnosed for many years. You need to decide if you want to battle with the NHS over this, pay privately to see one of the doctors available on the recommended list available from Thyroid UK or treat yourself. I now treat myself having gone for advice on occasions to recommended doctors. I am confident that my self treatment is better than I could get anywhere else.

Whatever you decide you will find people on this forum both able and willing to help. For now I would suggest that you cut down on all the exercsie and just take gentle strolls and gentle swims.It will as I was told by Dr Skinner several years ago take quiet a long time to get you well. I am much better now than I was then and still improving.

[Sashagurrey in reply to Hidden]

Not sure on b12 but yourfibrodoctor.com

States anything below 50 ferritin then iron supplementation is needed altho not all UK docs have same ranges.

[25joyce]

Hi rootytoot80, all of the above rings all the bells, I have been struggling for several

years with you symptoms, after being medicated with leverthyroxine dosage doesn't matter as most Dr's only use you tsh results and everybody is different. I have found out the diet and different foods make a vast difference, I am now on a glutton dairy free diet, I eat very well cooked greens in moderation no sugar should keep off the alcohol and one cup of coffee with at least 4hours after taking medication. Therefore give the diet a try even before you get your results, it will do you no harm then if you do have thyroid problem. If you find you do have a t/p there are vits and minerals that you can take that will help

[teenarocks]

Rootytoot, you surely have symptoms of hypothyroidism and probably Hashimoto's. But it really appears you have mulitiple things going on and you need to be checked thoroughly by a doctor who takes you seriously. Something you said about rashes put off a lightbulb in my head regarding Chronic Lyme Disease. I think a simple blood test can confirm or deny this. lymedisease.org/lyme-basics...

I know how frustrating and painful it is to have multiple symptoms and get no clear answers or help from the doctors. I hope you will keep trying until you get where you need to go.

[Rootytoot80]

Thank you to everyone who has taken the time and effort to read though my post. Such a generous thing to do with your spare time for a stranger! I feel like I have received more support here in less than 24 hours than I have from my Drs in 25 years! Without the support of my family I have no idea how my life would have turned out. When I get latest blood results should I add them to this post so that all my informtion is together or should it be on a new post? Thanks 😊

[marigold22 in reply to Rootytoot80]

Hi Rootytoot80 It is heartening to hear that your family is supporting you. Not everyone gets that, particularly as many (including myself) display mental health symptoms, which frightens family and friends. They do not know what to do about it, so turn away.

I honestly do think you would be best to go down the Private route. I personally messed about with Professors of Endocrinology for years, and they were to put it bluntly, negligent, abusive, idle and ignorant. If you can afford it, the private route is definitely the best and least stressful. You do not need extra stress whilst you are in this state of health.

When you get latest blood results, you can start a new Post, but add the link to this Post, so folk can see what has been happening previously. I will do a Follow on your profile

[Mamapea1 in reply to Rootytoot80]

Just another thought ~ have they ever taken a stool sample to test to see why you have chronic diarrhoea and passing undigested food? Surely they could manage that?

Also ~ yes, members on here are amazing ~ I don't exaggerate when I say this is a life saving site ~ so glad you found it. Hurrah for your mum for 'projecting' it onto you! lol. x

[Rootytoot80 in reply to Mamapea1]

Hi, have done this in the past...checking for cancer and coeliac- again came back negative so was dropped. Hence the reason i did the full elimination diet. No vast improvement seen other than the fact I noticed that soy made my throat swell up!

[Mamapea1 in reply to Rootytoot80]

Soy is really bad for thyroid anyway, but although tests for coeliac came back negative, might be just as well to go gluten free as sensitivity is very common, and many on here are much improved without it. Interesting that soy made your throat swell ~ I've no idea what it means other than allergy, but might be a tiny clue. I imagine you have a few things going on metabolically ~ probably exacerbated by no one bothering to properly diagnose you at puberty ~ sickening! This forum is full of refugees from the medical system ~ everyone thinks they're the only ones , or they're mad, or fat, or even suicidal, until they arrive here and realise they've been given loads of misinformation for many years in some cases. Sorry ~ emotions carried me away there ~ we all have so many wasted years, and recently there has been an influx of young new members with unbelievable blood results, and GPs are not helping them at all ~ very depressing to see that despite recent media coverage, Drs are still not stepping up to thyroid related problems, in fact, it's getting worse! thank various gods for this forum! x

[Heloise]

Hi rooty, when you go on any low calorie diet and gain weight you obviously have metabolic issues. First thought would be thyroid since your thyroid produces the calorie burning hormone FT3. If your diet is so clean you must be eating trigger food/foods. Gut issues are almost always at the root of this. Do you eat gluten? Gluten is very similar to thyroid tissue and eventually the immune cells will go after the thyroid gland. But if you have cut out gluten when you say you avoid carbs, and eat so well it would be strange that you would have leaky gut. Do you have any gut issues or constipation? I often post this man's incredible videos about the thyroid and also explains why doctors are of no help.

youtube.com/watch?v=BTNhlkO...(Not working as expected?)

[marigold22]

Rootytoot80 You need to stop taking Calcium supplements immediately. My reason is included in another reply . Just trying to bring your attention to it, as it's important

[Meenz]

Have you investigated Chronic Fatigue Syndrome? I have it and although symptoms can vary a lot between individuals, most of your symptoms fit the general description – especially swollen glands. There's some straight forward information here + on the links from this page: drvallings.co.nz/what-is-cf... What helped with my diagnosis was seeing a medical PHYSICIAN (actually saw 2) rather than a general practitioner or specialist. I wish you the very best in getting to the bottom of your ill health.

[melville999]

yes this person wrote well but your dictat of what she should and shouldn't eat is generalised guesswork too.Sometimes the stress of restrictive external dictat needs to be removed from someone so ill,so far down the line.that is a holistic approach even western medicine can sometimes help with

[melville999]

I will shut up in a minute rootytoot80 I promise.just re reading your post I noted 3 of 4 of your sports you played a lot of would have been played on grass pitches.Am wondering if any herbiside/pesticide exposure could have caused any of the fibontalgia type symptoms and limb problems.if the endocrine and metabolic people don't help it may be worth a neurology head scan appointment.best if luck

[SilverAvocado]

Hi Rootytoot80, you've had good advice about blood tests to get: TSH, freeT3, freeT4, both thyroid antibodies, ferritin, folate, vit B12 and vit D. Medichecks and BlueHorizon both do mail order tests that need a pinprick you can do yourself at home. A 24hr saliva test also looks a good idea.

The reason antibodies are important is that if you get a positive test showing you have these antibodies it will prove you have a thyroid problem.

Overall your thyroid results are quite bad, but not completely dreadful. It's always possible your thyroid is under performing because you have another primary issue, like anaemia or something similar. Antibodies would demonstrate that the thyroid failing is a cause in itself.

As other have mentioned, you will probably end up having to self medicate if you decide to try thyroid treatment. This means buying your own tablets from overseas and monitoring it yourself with blood tests, temperature and pulse measures. Many people here do this.

[Sashagurrey in reply to SilverAvocado]

Wow I've been looking everywhere for blood tests as my gp just says no thank you so much silveravocado

[melville999]

before you stop calcium meds ask docs to check your parathyroid hormones too as the corrected calcium was low and its not safe for any of us to recommend you stop calcium if you have a proven deficit.

[SickAndTired57]

Hi Rootytoot. Yourconfusing myriad of symptoms sound so similar to mine. When I felt doctors stopped listening to me, I would switch. Now I have one that listens, did the myriad of thyroid tests and still treated me even though I was in normal (but not optimal range). However, it did nothing to ease my symptoms, which my major disabling 3 at the moment are excessive fatigue, nausea and gastrointestinal issues (was diagnosed by my 3rd GI doc with gastroparesis after finally getting the correct tests).

Anyway, my doctor started suspecting Small-fiber neuropathy which at first did not sound like me, but upon further reading led me to dysautonomia. I asked her about it and I'm now set up for ANS testing next week. I've also had two in lab sleep studies done.

Without going on more about me (because this is short for me, too!), here are the main points I want to make...

1. Find a new doctor. Your relationship should be a collaborative effort regarding YOUR health. YOU are worth that respect. If your doctor feels "the same" as you, then they either don't really understand how you are truly feeling or need help themselves and if they can't help themself, how can they help you???

2. I'm not making ANY diagnosis, but think you should at least research...

A. Small-fiber neuropathy

B. Dysautonomia

C. ANS testing

There are somethings about those disorders you didn't mention as symptoms, but if you're like me, there are SO MANY symptoms which vary in degree, severity and incidence not just day to day, but hour to hour, that it gets too confusing to list them all. If I feel one symptom more severely one moment, that's the one or five I can explain much easier than the one I felt more the day before...

So when I started reading about the above, it started all coming together for me. I hope this makes sense.

I'm 45, and have struggled intermittently with fatigue from my the time I started my period, to 5 pregnancies and 4 children, but only in the last 4 years or so have they gotten progressively worse to the point I'm out of work on medical leave until next month. I have been out since June searching for answers, long term disability policy through work that I paid for was denied because "no tests" show a reason for the severity of my fatigue (even a sleep study saying I shouldn't drive!), and if I don't go back to work mid January, I will lose my good paying job, which isn't just work, I love it, too!

So I'm keeping my fingers crossed this test shows something.

Sorry so long,but with all the research I have done for myself that kept pointing to Hashimito's but wasn't, dysautonomia and Small-fiber neuropathy were not anything I had come across, so thought you might like to go through the information on your own.

May God bless you and give you the answers and relief you need.

SickandTired57

[Hidden in reply to SickAndTired57]

sick and tired. I will look up those 2 conditions as I am interested in anything medical but wonderred if you had ever thought about trying homeopathy. One of my mothers wise dictates was that the royal family would have the best medical advice available and were therefore worth watching re life style and health. I am aware bth queen and charles use homeopathy. I took my mother advice and although I have learnt that I really do need some thyroid hormones some homeopathic medicine has really hep lift the fatigue. The royals never wear glasses either not untill they pass 40 and need them for close up stuff.

[alchemilla12]

wel lif only it was as simple as that! NHS doesnt give you that option without a whole lot of hoo hah re changing doctors unless there is someone else in the practice .Even then they all stick together....

[melville999]

Most vegans I know aren't dangerous☺

[Shazzybabes]

Hi love I had every symptom you mentioned , I was that brain fogged I put weight gain down to driving too much for 6 years , until I collapsed after losing over 6 stone ( this was before I was diagnosed with U/Active thyroid ) it took routine blood tests and Iam still going up on the dosage , but in end found liver was not functioning intact I have chronic cirrhosis which is odd Iam not a drinker , I ask them do the thyroid test because my mum and sister suffer from it , your doctor should be doing these blood tests , I too have gone from healthy to problem after problem , demand see specialist, you may not have one illness , could be a combination of things , 12 moth down line Iam still seeing specialists ear nose n throat this week , don't let them make you feel like your being a burden, its your health the more you stress the worse it gets, sounds like my doctor, they don't even remember what they ask me to come in for , but I won't be fobbed off , I have not lost no weight since I started treatment for thyroid though, just stayed stable since I collapsed, so not sure on how that works,but my nails are awful brittle in black lines n under beds in some places like I've hit them with hammer , bruises n severe cramps throbbing in left lower leg , hair loss , also rheumatoid arthritis since 17 n gout ,tinnitus in left ear hearing loss, Iam not sure if all these things are connected, blood loss from bowels , I just want be healthy again , and I hope you get healthy and the answers you need and treatment , I really sympathise with you , its been the worst time of my life as you know !! Scared to Google anything anymore as I always seem read the dreaded C word n it just worries me more , take care n don't take no crap from your doctor , ask to be referred ❤️👍

[Rootytoot80]

i said it on my previous post, aside from my partner and my family, (particularly my mum who has been an absolute warrior in terms of supporting me and trying to find out whats going on!) I have feel like i have finally landed somewhere where people understand. Its still not been diagnosed as being a thyroid issue, however, the outpouring of support on this site has been incredible! To simply know that other people have these sorts of symptoms, the same struggles with the drs etc. as awful as it is and much as i wouldn't wish it on anyone, its also a comfort to know i am not alone. After 25 years of this, i was at the end of my tether and even just this very small window of hope from the latest test result is enough to keep me going. If it turns out not to related to my thyroid, then i will at least have a bit more confidence to go forward. In a way, i do hope it is my thyroid or something else that can be highlighted from these results just so that i know. 25 years of pain and misery only to be told there is nothing wrong with you and to "get on with it" is so cruel. Thanks again to everyone xxxx

[Mamapea1 in reply to Rootytoot80]

Rootytoot

So glad you have found this window of hope ~ I too have been ill for 25 years. I cried for 2 days when I found this forum ~ every time I tried to read something, I couldn't see! I was incredulous to discover how badly wrong my Dr and assorted specialists had been, and that all my disabling symptoms were not created in my own mind, as they were suggesting. There is a lot to be gained by reading around the forum and acquiring as much knowledge as possible ~ watch ALL the Dr Bergman video lectures ~ he has a great understanding of how the body works and it helps to know how things are connected. Also Dr Lowe ~ sadly deceased, but a true expert on all things thyroid, especially the more unusual aspects (although perhaps not that unusual judging by the amount of members on here!).

There are so many others ~ you'll find them and the knowledge will give so much confidence in going forward ~ you will no longer be at the mercy of ignorant GPs with financial incentives. Their attitude towards any patient who presents with symptoms that don't fit into their increasingly limited perceptions of 'illness' (they tend to be the ones for which they can prescribe Big Pharma drugs for, regardless of their efficacy) is nothing less than criminal.

Many members on here (if not all) have had problems of misdiagnosis or NO diagnosis, so you are among friends, and many will be quick to point out their own areas of medical failure, to ensure you don't fall down the same rabbit hole of medical incompetence ~ it's unlikely you'll slip through the net on here ~ there are so many lovely people to help. I have had more help on here from people I have never met than 25 years of GPs, rheumos, Endos, cardiologists, the list goes on. So will you.

I'm glad you have a warrior mum ~ they are the best! I hope you have a relaxed and lovely Christmas in the knowledge that 2018 will bring you improved health and happiness

Mamapea x

[Mamapea1 in reply to Mamapea1]

PS ~ if you haven't already done so, check out the link to the hypothyroidism guide by Dr Westin Childs which Londinium kindly posted earlier entitled Hypothyroidism 2018 ~ lots of info on there ~ sorry can't link stuff ~ useless on net! Just don't want you to miss it. x

[Terricotta]

Dear Rootytoot80, nowhere in your test results or history do I see anything mentioned around hormones. May I suggest that the next tests you have done are to check your sex hormone levels? Progesterone deficiency can have a tremendous effect on our wellbeing and as your problems started around puberty I would look in this area. The symptoms you have had to endure sound to me like a possible progesterone deficiency issue or one where your system isn't creating this from the foods you consume. Please get these hormones checked out. Progesterone is the basis for so many others, including adrenal hormones, which help to combat pain, etc. It is the basis for hormones that relate to sex drive, such as testosterone. Mental health issues are helped by this hormone as well as and in particular by oestrogen. It is a building block for so much health.

Wishing you much better health.