39 thoughts on “UK Thyroid Information”

1. Patricia M 2010-10-09 at 23:22

   Hello – my son had treatment for a brain tumour when he was 14 (2008). not surprisingly he was dx with underactive thyroid in 2010 and is on medication. He has an official endocrine appointment in November and i’m anxious to learn as much about how to test for thyroid disorders and how to understand the results. I’ve heard misdiagnosis is not uncommon. my son is tired, finds it hard to focuss and is gaining weight. appreciate any advice, tks Patricia

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2. Simon Waters Post author2010-10-10 at 17:01

   This site explains all common blood tests.

   http://www.labtestsonline.org.uk/

   If the tumour affected the pituitary or hypothalamus, then it might affect the control system for thyroid function, but this is all well within the specialism of endocrinology. Failure to diagnose, or late diagnosis is common with hypothyroidism, but because there are blood tests readily available once the condition is suspected it is rare to claim hypothyroidism when it is not present.

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3. Mia 2010-12-17 at 17:48

   I have recently been diagnosed with anemia and low thyroid function, I felt so ill a month ago on every level, and have done for over 2 years, so I began taking chlorella and spirulina, sea kelp and lecithin and for the iron a natural iron water called spa tone the pharmacist said this was better than the tablet version I was being offered as it had no side effects what so ever and is natural, and within a month my hair stopped falling out, my depression and many many other symptoms lifted, and I feel well there is no more chronic fatigue and I feel so much better, however I was shocked to find out that the blood tests this week (1 month later) showed that accordingly I am worse than I was a month ago, yet I feel alive and well and I mean really well compared with how I felt a month ago or actually have felt over the past 2 years or so, I am not a person who takes “conventional” medicine if I can help it, so I was really surprised that my blood results showed such terrible results despite that I am feeling on top of the world. I have to say that I am really confused as is the GP who is trying his best to get his head around “natural” medicine. So my question is how can I feel so well when the results show that I have “worsened”, and what should I do – listen to my body or take notice of the blood results that latter would please my GP no end if I would just take the levothyroxine and the Ferrous Gluconate which is for the iron or lack of iron in my blood.

   This has really got me curious and I am now looking for information, views and explanations from specialists and other medical people who can assist with this now bizarre experience.

   So if there is anyone who wishes to give their views on this, then I am open and willing to listen, in the meantime I am going to continue to take the “natural” stuff and see what happens.

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   1. Sarah 2012-10-31 at 22:49

      Hi there
      Would be really really interested to know how you got on with the spirulina et al. I have recently been diagnosed with thryoid problem and have been going down the natural route solo. Feeling bit better within 1st month but still not “right” at all. Would be really pleased to hear from you.

      Kind regards

      Sarah

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   2. Martina guest 2015-04-17 at 08:53

      Hi Mia,
      I read ur letter and very interested in how u get on ,
      I have under active thyroid and like to try alternatives
      too but not sure which is best to get ,
      I’m in the process off finding out and reading what other
      sufferers do to help themselves
      Going to Drs is not very fruitful as my symptoms get put down to fatigue and caring for yrs for my husband , all I been given is the thyroxine tablets and sent home not ever having seen a specialist to explain diet or anything that could help me besides meds, I still feel all the symptoms as before the meds which don’t seem to be lifting me at all ,I got a sneaky feeling something else is not well but can’t put my finger on it ,Drs dont want to take time talking to u …
      It’s almost … What u suffering with – get prescription & … Next patient in !
      Leaves u deflated and still unwell coping !
      Martina

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4. Sheila 2011-03-27 at 09:09

   The Charity, Thyroid Patient Advocacy http://www.tpa-uk.org.uk is in the process of creating a World Register of Counterexamples to levothyroxine-only (T4) therapy. This short survey is applicable only to those who continued to suffer symptoms on levothyroxine (T4)-only therapy, and who found those symptoms disappeared once they were started on a T3 hormone containing product , whether synthetic or natural thyroid extract.

   The objective of this Register of Counterexamples to T4-only therapy is to draw to the attention of those responsible authorities throughout the world, the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.

   If you fit this category, please will you complete the 3 questions with either ‘YES’, ‘NO’ or N/A here http://www.tpa-uk.org.uk/register_of_counterexamples.php All responses will be collated online, and your email address (if you provide one) will be used ONLY to contact you at a later date should this be becomes necessary.

   Sheila
   Thyroid Patient Advocate
   http://www.tpa-uk.org.uk

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5. Andy Bugden 2011-04-14 at 12:26

   i suffer from seizures or epilepsy. my eeg scans are not conclusive. I was speaking to a Doctor friend of mine and he told me that eegs are 99.9% accurate and told me it is the Thyroid. I did a bit of research and found a link with coeliacs and thyroid disease. Coeliacs disease is very hard to diagnose. up to 2% of people have it and most do not know it. I am one of 35000 who get also Dermatitis Herperiformidis(skin rash), so it was eventually diagnosed. for the other 99.9% of people the only way to diagnose it is by endiscopy. Moral of the story is that before you take the pill check to see if you are allergic to gluten. if you are a woman its is vitally important. A friend of mine in portugal lost her baby because she had abnormal Thyroxine levels. She had the surgery to remove it and during the subsequent pregnancy everything was fine. My wife took the pill, and during her two pregnancies she had to have her Thyroxine raised. Be aware also that if someone in your family has problems with the Thyroid it is important to get yourself tested since there is a genetic link.

   I hope this is helpful

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6. Carole Hughes 2011-05-14 at 11:47

   Hi
   great site, Im enjoying mooching, but have to let you know I cant find NPTech site, and I just get some internet training company or whatever it is. Nothing to do with blood tests and thyroid. Have they gone out of business? Maybe an update is needed?

   Carole

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7. Simon Waters Post author2011-05-14 at 19:48

   Thanks Carol, I believe the owner of NPTech retired and sold his business to a larger company in the same line of work.

   Couple of the thyroid groups (Thyroid UK, and TPA) have links to people doing private testing, but they don’t have attractive enough pricing to make them stand-out in the same way NPTech did. In most cases the groups have been offered a discount which I dare say is available to anyone who asks for a discount.

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8. Esther Jacobs 2011-07-19 at 23:29

   Hi,
   I need urgently to find a top surgeon who specialises medullary carcinoma and Hurthle cell neoplasm and has done many thyroids operation.
   I need a second opinion fast, but cant find anybody
   preferably in Essex or London
   Many thanks for you help

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9. Sonja Norfolk 2011-10-02 at 00:13

   I have been an under active thyroid patient for 19 years now and have never been stable, is there something that is being missed in my treatment. I have all the classic signs and symptoms depression, hair falling out, brittle nails, dry skin, lack of concentration, pains in my muscles.

   I feel so down about this each month I get my blood checked and each month it is a change in my medication, when it is reduced I sink even lower, then the following month if it is increased I never get to catch back up before it is then put back down again.

   Any ideas out there??

   Sonja

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10. Judith Neill 2011-10-25 at 16:48

    I have had my thyroid removed because of papillary cancer & can honestly say that I never feel well, I am always tired, depressed, over weight & suffer a lot of muscle pain. My blood Reading always comes back fine. I take 200mg of thyroxine but still I suffer all the above & because my blood results are fine the GP & Consultant will not change the dosage. What can I do?

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11. Tony 2012-01-20 at 22:27

    I have the below symtoms: Puffy skin under eyes.
    Loss of eyebrows
    Intolerance to cold
    Constipation
    Weight gain
    Sparse, coarse, dry hair
    Dry, shiny scaly smooth skin on shins and calves, total hair loss on shins and calves.
    Constant dry chapped lips.
    Confusion
    Depression, sudden freezing cold hands and feet. Fatigue -chronic fatigue
    Aches in joints, hands and feet
    Moodiness, unstable moods
    Difficulty concentrating
    Feeling sad
    Forgetfulness
    Loss of interest in activities, no motivation, too tired to work, depression, sex drive is zero, total loss of libido, only able to obtain an erection for short time.
    My stupid doctor tells me my thyroid tests are normal. Doctors are paid far too much money for the help they give. Can anyone recommend a doctor who knows how to diagnose this condition correctly? Thanks

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12. Anna 2012-01-31 at 15:26

    Hi Tony,

    know what you feel.

    I have exactly same symptoms as you and my last TSH test ( done a month ago) shows 3.33 – my stupid gp said that was nothing to worry about despite the fact that I saw my blood test results in his monitor and tsh result was in red!
    I have been trying for a baby for over 3 years – and cannot get pregnant. Except that – I had 2 early miscarriages in the past – probably caused by thyroid.
    Every single day I am sleepy and tiered , cannot concentrate . First time I noticed these symptoms 2 years ago but I did not realize that i could be cause of thyroid. At first I thought its anemia which I had 7 years ago ( was vegan for 13 years but I have been eating meat for about 4 years and my hemoglobin level was ok ) . I did jogging and work out for 2 hours every single day, was on law carb diet and guess what : i gained ;/
    Currently dont go to the gym (i was very fitness person) because dont have enough strength – all i want is sleeping but eat very healthy small portions – 5 times a day , no fast foods etc 2-2.5 litres of water and cannot lost even 0.5 kg . I am sleepy and tiered few hours after waking up – even if I slept 8-9 hours. really dont know what to do . I have done some research and learned that when someone is trying for a baby should check tsh level – because during pregnancy must be under 2.0 to prevent of brain damage of the baby and others fetal defects .
    I am going to different gp next week and if nothing changed – I will have to change my medical practice ;/ and find someone who treats people and their symptoms not the numbers only ( was told that 0.33 is nothing ).
    Feel awful every day get worse and worse ;/

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    1. Amanda 2016-01-10 at 20:24

       (I am Not being a bitch here, You call your GP’s stupid but they are not Specialized in one area, hence the title General Practitioners’). They need to look at tests and symptoms and consult with an Endocrinologist who is specialized in endocrine gland disorders and refer you for a consultation. as my GP consults. I have Autoimmune congenital hypothyroidism.
       ‘
       I have cut right back my gluten consumption, but not cut out completely. as it upset my system.
       I’m Not saying you should as I am not qualified to make that suggestion. I don’t want to be sued.
       I am just imparting my experiences. I Would Never do or suggest anything to endanger health.
       I have sought advice before doing anything and have not cut out Levothyroxine. which I take daily now on 200mg. I am Simply sharing my experience. Hope this Helps ask them to consult or refer if they don’t find a GP that does and backs that up.

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13. Hopeful 2012-02-20 at 13:18

    Quite useful links and information Simon. I find labtestsonline to be the best source for all the NHS tests etc. For real time forum discussions, we have a support community at http://www.thyroidhelp.org

    Thanks

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14. Sweeta 2012-02-24 at 00:19

    Hi,
    I suffered from hypothyroidism in 2009 and after taking thyroxine, my tsh levels were normal I.e. 2.3. So I stopped thyroxine. We were trying for a baby in 2011 and did a thyroid test just to be safe and it came as 3.5. Gp mentioned no need to worry. I conceived in oct 2011 but unfortunately miscarried in the 10th week after which I got my test results with Tsh levels as 6.53 ( this was when I was 9 weeks pregnant)
    One NHS doctor told me that I should be on thyroxine before trying for another baby but my GP refused to revommend a thyroxine dose and asked to do a test again in December 2011. Tsh level this time 4.5 so Gp mentioned no need of thyroxine! Now we want to try for another baby but I am scared as I am not on thyroxine. What should I do? Please advise.

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15. mag 2012-03-10 at 16:05

    I have gained about 3 stones in weight over the past 10 years. I have tried to eat more sensibly, but all to no avail. I had blood tests done, as I was suspecting that my thyroid was underactive. My TSH came back as 4.5 and I was told it was fine. Reading stuff online it should be less than 3.5! I feel that tacking the thyroid problem is the only way to lose the excess weight I’ve gained.

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16. mag 2012-03-10 at 16:07

    I also think that it depends on your individual PCT in the UK. I believe thyroxine, insulin are free of charge, even for people who normally pay for prescriptions. Could it be anything to do with cost?

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17. Simon Waters Post author2012-03-10 at 18:34

    Hi Mag,

    people receiving thyroxine and insulin in England are generally entitled to a prescription exemption certificate. This exempts one from paying for prescriptions (but not dental charges).

    You need to complete an FP92A form, you can usually get it from your doctor’s office.

    More complete exemptions are available on other grounds including age and low income.

    http://www.patient.co.uk/health/Free-or-Reduced-Cost-Prescriptions.htm

    I don’t think the cost issue concerns doctors on this question since they aren’t paying. In my experience doctors often don’t know if a patient has taken advantages of the exemptions they are entitled to and often don’t mention that the exemption is available. Pharmacies are usually quite good at picking this one up, since most are surprised if they have to charge for a prescription containing thyroxine.

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18. Denise Fleming 2012-05-06 at 17:26

    Dear Simon:
    As a thyroid advocate and person of influence, I would like to ask you to read this thyroid advocacy petition and to share it with your members, asking people to sign. Change is needed and we need more signatures! Millions of people are suffering from undiagnosed thyroid conditions because the current practice of doctors failing to stay current in thyroid testing. The petition will be sent to the American College of Endocrinology and the American Board of Internal Medicine as well as four other well-known endocrinology organizations. Sixteen doctors later in 3 different states, I finally received a diagnosis. And there are millions who share my story. A crying shame!

    Thank you for sharing this information. Facebook is a powerful communication tool, too!

    Petition link is here:
    http://www.change.org/petitions/board-certified-endocrinologists-should-be-proficient-in-and-mandated-to-be-current-on-thyroid-disorders-treatment?utm_medium=facebook&utm_source=share_petition&utm_term=share_page_mobile

    Sincerely,
    Denise Fleming

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19. sandra 2012-05-17 at 16:59

    Hi Simon can you recommend a good, sympathetic endocrinologist for a second opinion?My daughter age 20 has been suffering from hashimotos thyroiditis for several years now and is still not well. I need someone who is willing to check her completely. I live in Greater London/ Bucks/ Herts borders but am happy to travel anywhere. Thanks.

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    1. Simon Waters Post author2012-05-17 at 17:46

       Both the British Thyroid Foundation and UK Thyroid operate networks of volunteers to have a rep local to you with local information.

       The BTF reps probably won’t directly recommend someone, but they will be able to share stories they have heard, and advise on how the system work – which is often the hard bit.

       In the first place I would discuss with your GP, as they again often have informed views about local consultants.

       If you find no joy, get back to me, as I have family close to you several members of which have thyroid issues.

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20. sandra 2012-05-31 at 16:25

    Dear Simon,
    It’s Sandra, posted above on 2012-05-17 at 16:59. I have had no joy in finding a good endocrinologist. You said I could get back to you. I do not mind travelling to see an endocrinologist who practises general medicine and who is happy to do some investigative work on what is happening to my daughter. She still feels ill even with her thyroxine. Also, her immune system seems to be badly compromised: in three months she has already suffered from shingles, steph infection and pleurasy and has had to drop out of education. I do not mind seeing anyone anywhere privately – help!

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21. Carol Jackson 2012-06-08 at 14:04

    Trying to find a recommended endocrinologist in Herts/Bucks area is a nightmare. My consultant retired 2 years ago and I was just left high and dry. I had my thyroid gland removed 11 years ago due to papilliary cancer found quite accidentally after having a benign lump removed from my neck. Since then my GP has lowered and raised my thyroxine and really they have never checked anything out since my consultant retired.I want to find another consultant who I can talk to about problems but trying to find one!!! can anyone give me any names at all – no- responsibility – just somewhere to start.

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    1. Kate Braniff 2012-08-20 at 00:42

       H there . I read yr comments n although I live in northern Ireland I wondered perhaps if you contact the Ulster Hospital Dundonald in Belfast they have a endocrinologist , a Mr Harper. I have had the condition from two months old (38 years) but I only met him when I was pregnant. The number is 02890 484511, although to be honest you probably would need referral from GP n tell them about Mr Harper. It can take a while to get stabilised on levothyroxine.
       Meanwhile I hope you have success n hopefully get a specialist nearer home . Don’t know if this will help but it’s an option. He is experienced in both thyroid disorders and diabetes n other disorders

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22. Kate Braniff 2012-08-20 at 00:18

    Dear Simon
    I was diagnosed of hypothyroidism 38 yrs ago when I was
    Two and a half months old. Over the years though in 2007/2008
    I also started on seroquel (also known as quetiapine) and sertraline . Currently on
    750mg daily seroquel ;225mg daily levothyroxine and 200mg sertraline.
    I know this sounds vain ( and other symptoms of still having auditory hallucinations persist despite on seroquel) but I feel I’m banging my head against a brick wall re trying to lose weight. I walk my dogs most days and I have two young kids to keep me busy .
    When I can, I go to zumba. I would be so grateful for advice please how to lose weight n kp fit when on those meds. I’m currently. 14st 4piunds n 5ft 5inches tall. Thankyou very much

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23. Kate Braniff 2012-08-20 at 00:32

    Ps sorry to b pest but although I considered not taking seroquel I know from experience when I forgot (genuinely) to take it some nights I had terrible symptoms and even when it was reduced slightly in march it was then slightly increased in July again. I know some people who don’t understand wld go ” do t take it if u wanna lose weight” but I would t like to have all sorts of symptoms so I take the seroquel. I just wonder tho does it have effect on thyroid meds/interfere with them? Advice please x

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24. Robert Parry 2012-09-20 at 10:12

    Dear Simon

    My mum has just been diagnosed with Hyperparathyroidism and am getting conflicting information off diferent sites about diet.
    Please could you recommend a site with information for a reduced calcium diet and what to eat an not to eat.
    My mum is 67 and other than this very fit and active although it explains her tiredness and other symptoms over the last couple of years

    Many thanks. Rob

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    1. Simon Waters Post author2012-09-24 at 21:47

       Hi Robert,

       afraid the parathyroid glands whilst usually attached to the thyroid gland they are involved in completely different types of activity, and I’m not aware of relevant resources about the parathyroid glands.

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25. md mehedi hasan 2012-09-30 at 02:53

    11/10/20011 =t3 =4.3 t4=204 tsh=0.2
    06/02/2012 =t3 =2.0 t432 tsh = 60.5
    20/3/2012 =t3 =5.6 t4230 tsh =0.1
    23/4/2012 = ft416.2
    23/4/2012 =tsh 0.4
    26/07/2012ft47.3
    26/07/2012 ths80.7
    i am hasan from bangladesh , age 47. every day one tablet carbiroid eat . but i do not feel easy . always a few pain has head . now what can i do

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26. fiona smith 2013-08-29 at 12:27

    Hi Robert
    I have two nodules on my thyroid and although my thyroid hormone levels are within the normal range (last blood test done six months ago), the nodules have grown. I would prefer to natural remedy treatment and hoped that you could recommend a natural thyroid specialist or natural endocrinologist.
    Regards
    Fiona Smith

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27. Thomas davis 2014-01-07 at 15:44

    The thyroid hormones are vital in the functioning of the heart because they assist in managing the heart rate as well as output. Thyroid hormones calms the heart muscle tissues so that it is competent to pump appropriate volume of blood throughout the body. Low levels of thyroid hormones is unsafe to the heart as it could decrease one’s heart rate drastically. Because of this, the blood vessel walls become inflexible and blood pressure goes up, and may result in high blood pressure.

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28. Mazen 2014-07-23 at 21:23

    Hello,
    How are you..
    I hope every thing is great at your side.
    This is Mazen from Saudi Arabia and I need some help please,
    My Mother was diagnosed with thyroid tumor, tests result are not conclusive if its cancer or not.
    we are coming to the United Kingdom in order to seek another opinion.
    will you please help Recommend a medical facility or a certain surgeon we can visit?
    this is our first visit to the united kingdom any help will be much appreciated.
    Thank you very much.
    sincerely, Mazen

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29. Helen mcCAnn 2015-08-12 at 16:25

    My T3 is slightly high and T4 is very high, I’m getting all the symptoms of hyper but I keep putting weight on (2 stone in 3 months!). I have a lump and they have given me Carbimazole and want me to have radioactive iodine. I don’t want to put Radiation in to my body, what natural methods can I use?

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30. Anna 2015-12-24 at 10:37

    Hello,

    I am looking for help for my mother. She is suffering a lot with badly treated hypothyroid, has all typical symptoms and lives alone. I live 250 miles away and am a full tme student so it s hard too dedicate enouugh timme too finding the answers for her, she cant do it herself becoz she is just too frazzeld and fuzzy headed with no energy whatsoever. It iis very sad to see. She lives in Brighton, her doctr wot prescribe T3 or NDT but wwill refer her too an Endo oonce she has the latest bloods back.. The oonly one ii can find in the area who may be sympathetic iis Dr Quinn. We can payy if need be, althogh travel for her is very difficult. Please does anyone have any inf on a decent Endo in South of England, pref not London as she wont be ale too travel there (swollen legs, hurtiing feet, breathing probs to name a few) I am so deseprate for some help. Thank you for any answers you may have, If yo have any answrs or infoo i wwoud love it if you could email me at annaoake@gmail.com

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31. Laura 2016-03-16 at 17:17

    Hello,
    I wonder if you can help me because I am very confused. Yesterday my gp prescribed me the Levotthyroxine tablets 50micr. My tsh is 12.2 but my free T4 is 16.,7 so is perfect. Today I spoke with a different gp who suggested me to stop the medication and prescribed me further blood test.
    How is possible to have normal level of T4 and the tsh high? And if also the T3 is fine but the tsh still high what to do? And what is the reason? Should we consider the tsh? Or is more important consider the level of t4 and t3? Anyway I am feeling often tired and depressed, I put some weight too, 2 kg. I am not sure now it depends on the tiroyd..

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32. s 2017-04-21 at 06:27

    my mother who is 77 years done her thyroid scanning two weeks back and radiologist suggested FNAC of a nodule. After FNAC it reported as ” satisfactory smears show few clusters of benign follicular epithelial cells, some showing Hurthle cell change in a background showing hemosiderin laden macrophages, few multinucleate cells,collide and blood.” Now she is taking 88mcg Thyronorm. and have some sound proble. taking medicine for BP.T3T$ TSH results are normal But Antibody is high.

    Will she needed a surgery.

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33. lee peng teng 2017-12-20 at 03:42

    Please inform me by email can i eat seaweed everyday

    regards

    leepengteng@HOTMAIL.COM

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