I am new here but have spent a while reading through the forums and feel like I have had a lightbulb moment and that all the symptoms I have suffered from for years points to Hypothyroidism. I am a 28 year old female who is extremely run down and my health is only getting worse. I work full time but my sick record is appalling and I have been off for 3 days this week from shear exhaustion and have slept between 14-17hours each day!
I had a blood test 3 weeks ago and went to the GP today for the results. It was possibly the rudest encounter I have ever experienced with a GP and I intend to promptly write a complaint. I had taken with me a typed out list of all of my symptoms but she wasn't willing to listen and suggested that my symptoms might be psychological. I am not depressed, just fed-up with feeling run down and exhausted. The GP skimmed over my blood test results and it was only when I queried the TSH that she acknowledged it was out of range but nothing to be concerned about. Luckily I saw posts on here and asked for a print out. The numbers are:
TSH = 5.9mu/L range 0.35-5
Free T4 = 12.8pmol/L range 9-24
This was done after lunch and I realise now from reading forums that I should have asked for a morning appointment. T3 and antibodies were not done. I asked today if I could have these and the GP said that I wasn't ill enough for this and it wasn't typical practice on the NHS. The appointment concluded with the GP suggesting I apologise to reception for having taken 22 minutes of her time and having run over (although the GP was 5 minutes late herself) and I wasn't sure whether to be furious or cry!
My symptoms and diagnoses have been building over the past few years and have involved numerous visits to various consultants. I can't fault them individually but want to know what is causing all these separate problems. They are:
•Constipation – slow transit and rectal prolapse from constipation confirmed by gastroenterologist. Have had shape study and colonoscopy. Previously diagnosed with IBS
•Adenomyosis and mild endometriosis – via laparoscopy for pelvic pain and painful bleeding
•Restless leg syndrome and grinding teeth – via sleep study for exhaustion(!)
•Deviated nasal septum surgery – investigated for allergies and exhaustion(!)
•Asthma – breathing difficulties associated with allergies. Birch pollen allergy, nut allergy, food intolerances. I have been completely gluten-free for two years (due to my own research) which has helped.
Current symptoms:
•Exhaustion. Often sleeping 14 hours when not required to get up for work. Falling asleep on sofa daily. Restless legs getting worse when fatigued
•Generally of feeling of being run down, lethargic, susceptible to illness. Feeling of poor immune system
•Permanently freezing cold. Pale complexion
•Recent development of night sweats
•Worsening of existing allergies. Frequent rashes, dry skin patches, wheezing, itchy eyes and ears, swelling of hands in the cold. I have recently developed a rash on my face whenever I got outside and it is cold. The GP suggested this might be eczema but it promptly goes away with an antihistamine.
•Low mood, anxiety, feeling foggy, not interested in doing anything.
•Feeling dizzy or faint. Feeling of pounding heart
•Lack of sex drive and increased mood swings
•Severe mouth ulcers
•Constant headaches
Sorry for the long list. I could add more!..
I feel that this points to hypothyroidism but the GP suggested I was just unfortunate to receive these diagnoses. These have got progressively worse over the past 5 years and my quality of life is suffering. I have shown this exact list to the GP and to some of the consultants I have seen (Gastro and Gynae) but none have suggested hypothyroidism. It was only when I saw posts on here that I thought there may be an issue.
I am considering paying for a private blood test to thoroughly screen all of my thyroid including antibodies. If anyone has any advice on this or if it is even necessary then please let me know.
You are heading towards being hypothyroid and probably are by those results but they most likely will not do anything until your tsh reaches 10 and your t4 below range. It depends on the doctor though. Your t4 is very low so highly likely your t3 will be also. One thing is for sure it's not psychological and it's not in your head. My results were like this and I was told normal, nothing else just normal. I was pretty uneducated about the thyroid at the time and just accepted it. Then within a year I rapidly declined. It can happen slow or fast nobody knows but your t4 will eventually go lower and your tsh higher. You just have to weigh up if you want to push now for meds or wait. It's not easy I know!
It may be worth getting a blue horizon test as that is what I did eventually, then you can get a better look at all your levels. There are links to it on the main thyroid UK site. Sure someone will post a link for you x
Oh dear Sleepyjen, welcome to the forum, that's terrible your GP has been so negligent! Yes, your TSH is way too high (and has probably been climbing for years) and over-range, you should have been prescribed Levo immediately. I'm glad you are going to complain! More learned people will be along to advise further, but so glad you found us!
The major fault of the British Thyroid Association's guidelines on diagnosing anyone with hypothyroid is that the TSH has to reach 10. By that time we can be extremely unwell with a myriad of symptoms.
In other coutries we will be diagnosed with a TSH around 3 with symptoms.
I am not medically qualified but would suggest that you now look after your own health. Most of us on this forum have found it a very hard and long road but there have been successes and it is possible for you.
The problem in the UK, is that most endocrinologists and doctors have had extremely poor training re dysfunctions of the thyroid gland - they do not look at the patient (are unaware of how we 'look') ignorant of clear clinical symptoms. Will prescribe for a symptom when the need is for thyroid hormone replacement. We usually have a cool skin, low temp, insomnia, unexplained weight gain, high cholesterol, female problems. Tick any more on the above link.
Get a new blood test and we have recommended labs and get a full thyroid function test. It has to be the earliest and fasting. Post results on a new question and members will respond.
Looking at the experience of other posters, lots of us struggle with GPs and their reluctance to listen - just wanted to let you know that you're not alone!
Following advice from this forum, I did a private test with Medichecks, it was the £119 one which measures T3 and reverse T3 as well as all the other thyroid hormone and antibodies.
Medichecks gave me a report explaining the results, along with a dashboard to look at online showing the results on graphs. I found it easy to understand and it gave me enough information to do a bit more digging online to find out what to do next.
I know this is a fair amount of money to spend, but I was also getting nowhere with my GP and this has at least given me confirmation that there is a problem, that there are things that can be done about it, and I now have a starting point to work from.
I started with fatigue in August 2015, I had bloods done, my TSH was 5.35, FT4 was 10.2 (7-17) I was told I was fine. I knew I wasn't. I did my bloods after eating breakfast so they'd have been worse had I have fasted.
I kept a close eye on my results by testing private with Blue Horizon or Medicheck (£29 for TSH, FT4 and FT3 if you buy on Thyroid Thursday). My TSH in January last year was almost 7 and by May it was 9. I was told I was depressed, anxious etc... and that was why I was so exhausted. I literally was so ill I'd take my kids to school then come home and lie in bed all day. My thighs were weak all the time, I felt off balance and giddy in my head as I walked and just sheer exhaustion. It was awful and a year on I am still struggling with fatigue and weak legs. It's awful. My TSH is still high and I am on thyroxine. I was put on thyroxine last May.
Your TSH Is high, seeing as optimal is 1. Your FT4 is low in range. Mine on a private range of 12-22 was 14. That was when I began taking thyroxine. It is now around 17. If you had done it fasted your results would have been higher. My advice is to buy a test from Medicheck, many on here test this way, I do every 2 months and my GP accepts the results. It's how I got him to take me seriously. Monitor yourself every 2-3 months and send the results with a cover letter explaining how ill you feel so they keep it on record. My GP at first was very dismissive but now he takes it pretty seriously and he even suggested testing antibodies and in November ran a whole host of bloods to make sure nothing else was going on. In the May when my TSH hit almost 9 he admitted I had been right all along and treated me. On the NHS they don't usually treat you until the TSH hits 10, at 9.28 I told him I wasn't willing to wait any longer as I was struggling to take care of myself let alone 3 children.
My symptoms are very similar, I have the worst brain fog, everything feels unreal as I am just so so exhausted. I feel weak and I could honestly sleep all day. I feel the floor tips as I walk I feel very off balance and woozy, I have for a year. It's awful. Some days I don't even have the energy to get in the shower which makes me feel awful about myself. I have become very anxious, agoraphobic and this has all led to moderate depression. I honestly wouldn't wish it on anyone.
It's awful feeling so exhausted, it effects you in so many ways. I really feel for you. My advice is do the bloods private, fasted before 9am. I do mine at 7am and only drink water before the test. Send them special delivery, they will arrive the next day and honestly I get my results email within about 4 hours, it's amazing. They do the basic thyroid test I have mentioned but also the thyroid and full vitamin screen which will check all your vitamin levels which you do really need checking if your GP hasn't already. My ferritin and B12 were low and were adding to my fatigue. The test is called Thyroid check Ultravit.
Good luck.
Julie
in reply to
Thank you for your advice Julie.
I am glad you finally got the help needed. I am definitely going to look into the private tests as I don't want to wait until my health deteriorates further. I could quite easily lie in bed all day every day and it is getting difficult to get on with life!
Your GP is incompetent as well as rude. TSH is over range so why doesn't she think you are hypothyroid? Antibodies are tested to see whether the patient has autoimmune thyroiditis (Hashimoto's) which progresses to hypothyroidisim in 90% of patients, not because the patient has achieved a certain level of illness. I suggest you see another more clued up GP at your practice and do write that letter of complaint to the practice manager or senior GP.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
I can't see the point of private testing at this stage. Your TSH is abnormal and if you had tested early in the morning would have been higher.
Sleepy Jen, I could almost have written that myself. I am diagnosed contact dermatitis, Discoid eczema, random allergies to environmet/foods, significant allergies to metal cobalt nickel, hypothyroidism and sjogrens syndrome, hypertension, prolapse discs lower back, harmonious on liver, and of course, now debilitating anxiety -2 years of going to GP and one consultant after another.....
I am sick of being sick. I go to one appointment after another. One by one they assess this or that part of my body... no one appears to see or hear me in the midst of all this... hospital phoned today can I go for another blood test, I had blood tests on Tuesday. I have blood test frequently. Arms, hands black blue as veins poor... I have no definitive answer as what an overall diagnosis is. I am missing me and my life..
This site is valuable. You will perhaps benefit from taking control of getting your own blood tests organised as people suggest.
I wish you all the luck in the world. I hope you get well soon.
Thank you! I have emailed Louise already and will get to boots tomorrow for some vitamin C.
No Hidden Don't go to Boots, they don't seem to do a powder and you don't want to buy any of their own brand tablets or capsules because they are cheap for a reason, contain the wrong form of ingredients. Spend your money wisely and get good quality supplements for all that you need.
For Vit C powder, to make a nice drink mixed with orange juice and drink through a straw (because it is acidic and you want to protect your teeth), here are a couple of recommendations:
This is probably the only UK made Vit C powder that doesn't use Chinese ingredients:
The best bit of that paper is the right hand half of Table 3 which shows median TSH levels in both sexes in different age groups. For a 28 year old the median TSH is 1.30 and for 97.5% of people in that group the TSH is lower than 3.30.
You will notice from the graph that your result is barely on it, since the highest level it shows is TSH = 6.0. A level of 5.9 is NOT normal.
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You really ought to get yourself a different GP. The one you have is faulty and appears to have had compassion removed and replaced with sadism.
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In this day and age, with the NHS being starved of cash, your best chance of getting the right tests done is to pay for them yourself.
The blood must be sent to the lab through the post, and results are returned to you via email.
Once you have your results post them on the forum in a new post and ask for feedback.
The blood test must be done fasting (except for water) at about 7am - 8am on a Monday - Wednesday. It must then be returned to the lab through the post the same day the sample is taken, asking for "Guaranteed Next Day Delivery By 1pm".
I am studying a Master's in developmental psychology at present and frequently look at ranges of a normal population. I suggested to my GP today that the range was skewed and I was concerned that I had read TSH should be around 2. She dismissed this immediately, said I was mistaken and this range was from a healthy population. That was promptly before she said the problem may be psychological. Pft. Too cross for words.
Your doctor won't have a clue what the distribution of any test result is in a normal healthy population, she's just making up her comments to suit her agenda, and is making assumptions that she can't back up or justify in any way. She's telling you what she wants to be true, not what is actually true.
human bean mentions only have water before taking blood.
I recently discovered that it needs to be plenty of water to help blood flow - so the nurse said .I had been unable to produce enough by the finger prick although I had just managed once before.
Sorry, harmonious on liver! Should've read haemangiomas on liver.. whoops
Thank you all for your very speedy responses! It is good to know that I am not alone (although I wouldn't wish this on any of you) and certainly good to know that I am not just a hypochondriac as it is being suggested by some...
I am starting to research different tests or ways to convince the doctor that I am unwell. I know some have said that I might need to wait for the level to get even higher but I am not sure that I can go on feeling like this. I am getting married this summer and just want to look healthy and stay awake long enough to fully enjoy it! My fiancé is adamant I should pay for private tests as well as write the complaint but its hard to know if the GP will take me seriously even if I do a morning test and the levels are slightly higher...
I am also considering changing GP surgeries as we have moved house and there are closer surgeries to my new home which may be more helpful (I can hope!).
I am so sorry to hear that others have also been struggling for years. Webar4780 I totally empathise with being pushed from one consultant to the next. I have had two surgeries and numerous invasive hospital tests for complaints that have fundamentally been exhaustion. The gastro thinks food intolerances and constipation is the problem, the ENT thinks my sinus' and allergies were the issue, the Neurologist thinks its my restless legs syndrome. I don't really care about these individual diagnoses/tests as there are rarely any solutions; I want to know what the main cause is but feel that I am going to have to find that out myself.
I can already see that this site is going to be a life-saver so thank you all very much!
It was only when I said I'd been trying to conceive for 2 years that they finally prescribed me thyroxine. I had no idea, just thought it was ibs and generally run down, but in doctor reviewing my results said my TSH had been as high as 23 once and they hadn't told me because it was normal other times! So it takes 2 years of infertility to make them consider giving you a cheap drug, just because at one point in the past GPs were giving it to people who just wanted to lose weight. Not that I'm suggesting you say that you've been trying to conceive if you haven't but i thought I would mention it. Again good luck, am finding this post so useful.
I haven't been trying to conceive but following my gynae diagnosing adenomyosis he suggested that we should think about it as this in itself may cause issues. My health has deteriorated so much since then that I was just saying to my fiancé the other day that I have no clue how I would manage to look after a baby in this state; I can barely look after myself! We are getting married soon and will be thinking about it not long after but I really want to get my health sorted and be as healthy as possible before we think about it.
Sounds sensible and you have time on your side to heal as much as possible first. I was 34 when I met my partner, started Ttc when I was 35 and now 39, just wish I'd explored all the lifestyle stuff and not just trusted the docs when I was in my 20s. All the best xx
in reply to
Hidden Well done you for not being intimidated by your GP 😀. This forum is as you say, a life saver. Best wishes on getting back to wellness.
Basic thyroid tests are only £30 (for TSH and Free T4), I've been ordering one a week so I can figure out why my TSH goes up and down all the time. I think it's either related to food intolerances or possibly sleeping habits.
Definitely get the thyroid antibodies checked once. If you have Hashimoto's, it is not something your GP can ignore.
When my GP isn't doing enough, I order private tests. Don't get stuck feeling helpless, google your symptoms and purchase some appropriate tests.
In regards to changing GPs - Talk to your neighbours or anyone in the area who can attend any of the practices. You are particularly interested in those who have had problems with GPs e.g. delayed diagnosis and had to change, or have chronic diseases where they themselves are informed on the latest research on their disease as they will be able to tell you if a particular practice is any good.
Omg so much of this is me- even the teeth! It's all (or at least mostly) connected - please don't doubt your sanity, welcome to this club. I posted a complaint on my gp website after a similar encounter with my gp. I managed to get tpos tested once after a lot of chatting to nurses etc but that's it! Also considering private tests but so expensive I am currently trying all the 'free' lifestyle stuff first like diet, exercise etc. How often do you get the extreme fatigue? For me it does vary according to hormones so useful to keep a diary. I've atarted noting symptoms, sleep, what I ate, what supplements I took etc daily to try to work out patterns. Nhs support is so limited. If you find a good doc/private support please share xx
Forgot to say, hot water and lime juice in the morning helps my constipation. Also lots and lots of water, and magnesium supplement at night and/or bath with Epsom salts, and a hot drink of almond milk with raw cacao. I've tried castor oil packs for my endometriosis and adenomyosis but not seen any improvemt yet.
@Well, Hidden I think humanbean has been very kind describing your GP thus:
"You really ought to get yourself a different GP. The one you have is faulty and appears to have had compassion removed and replaced with sadism."
I would have said "What a B*tch", but I won't because it's a bit naughty and I might get banned.
What a dreadful way to speak to a patient
"apologise to reception for having taken 22 minutes of her time and having run over"
Indeed!!!!!!!
What are they teaching doctors these days?????
I can't add anything to the replies other than to agree about getting a Thyroid Plus Eleven test from Blue Horizon to see results for antibodies and vitamins and minerals. Some of us have probably guessed where there may be a couple of low levels already.
And this is one of the Senior GPs in the practice. It was completely evident to me that she was more concerned about appointment punctuality and reducing the expenditure of the surgery than listening to me.
I had the same thing last week ,mine said'' you only have 10 minutes'' and the waiting room was empty ,!! you will get some lovely support on here though ,its a mind field out there ,and takes forever to get the help we need , good luck and stay in touch with us .
I got diagnosed through gastro 10 years ago with a TSH 177.7. I have asthma and allergies and have also had my septum straightened and sinus surgery. 4 years ago I started getting severe bowel problems and was admitted to hospital 15 times in 2 years with bowel obstruction. I have been diagnosed with slow transit constipation and had 1/3 of my large bowel removed 22 months ago as it was very long, loopy and floppy and kept folding causing obstruction.
Has the Dr started you on thyroid treatment? Did they test your iron and vit b12 and vit d? Can you ask to see a different dr? Hope you get some help soon x
Wow Kerry1971! I feel completely knocked out at present so I can't imagine how you would have felt with all of that going on!
Unfortunately not. The GP didn't even want to discuss the thyroid levels and just dismissed them. I am going to ensure I get the vitamins and minerals tested too.
I didn't even know I was ill to be honest. I still worked full time in an infant school and would go out at weekends. Also had 2 children and worked evenings and Sunday at Tesco. I remember my hair falling out, heavy periods, gruff voice, feeling low and couldn't be bothered to do stuff. Really bad constipation which I kept going to the Drs for and getting fobbed off. I remember crying at the drop of a hat which isn't like me. My husband left me just before I was diagnosed for another woman because I had no interest in him. I wasn't over weight and only weighed 7 stone when diagnosed which is probably why I was never tested. My twin sister also got diagnosed just after me with the same TSH 177.7. Take all the advice given and get yourself better soon.
Find a new GP, she sounds useless. Don't argue with them and make things any worse.
I have a TSH fluctuating around 5 or 6, my GP took it seriously.
Tip. If you are based in London (might work elsewhere too), google for Polish surgeries (a few in West London, probably elsewhere too) and go to see a private GP. For about £150-160 you'll get an appointment and full bloods done (incl. antibodies). Docs are mostly Poles who have trained in Poland (I think they treat TSH 3 and above over there) and have a different mindset. Their English may not always be perfect, but you get help for a relatively cheap fee compared to Harley street for example (where you may still end up with a narrow-minded endo). Here's an article from 2013 (not sure if it is allowed to post it, sorry if it is not): dailymail.co.uk/news/articl...
So the range was for healthy people? But you are t in the range which. Y my reckoning makes you ill! It's her job to get you as well as you can be. Have you friends in the area you can ask if they attend a different surgery and get some feedback? This one hasn't a clue! My GP hasn't either but she tells me that and is happy for me to go elsewhere!
Sadly the attitude of your GP is not unbelievable! Happening all to often to all of us 'hypochondriacs' on here and elsewhere. Can we all be suffering with the same things and all be wrong?? Reading your list of symptoms I can relate so much to you. As I'm sure so many others can too. I feel it is negligent of GP's who are suppose to help us medically, when they are turning their backs on us all, leaving us fending for ourselves trying to get the help we need on the internet and on forums, like this one, from people who are not necessarily medically minded and can only advise using our own experiences. GP's would then, no doubt, belittle us for doing so. What choice do we have? TG for this forum! I am still getting negative attitude from GP's despite being diagnosed nearly 3 years ago, and having spent several years finding solutions outside of the NHS...solutions that worked! The GP's will still not accept we might be right and might actually be the best judge of what is happening to us.
I took the route of paying to see Dr P. Some years ago. I would ask you to consider you adrenal health along with the thyroid symptoms. Adrenal have a huge impact on thyroid. If you have struggling adrenal health you will not get your thyroid sorted. You mention rashes, my 22 year old son has been struggling with rashes, supposedly eczema, very serious flare ups, though he has had allergic responses to different things along the way too, along with the fatigue and other HypoT symptoms. Following being fobbed off by his GP, I took him to see Dr P last month. Dr P felt that my son's thyroid was working ok, slightly higher Thyroxine levels. However, he felt this was due to what he said was obvious adrenal deficiency. This made sense regarding the rashes too, as the cream (we also had to fight for) which eventually did work to clear the rash, and quickly, was cortisol based. Unfortunately the rashes alongside the fatigue would reappear, increasingly frequently. We are hoping that by treating my son's adrenal issues it should also help reduce and hopefully, eventually, eradicate the need for the cream. So far, his flare up have been less severe.
Unfortunately anyone struggling with health issues and being ignored and made to feel like time wasters will be under stress, and as this drags out and we become more and more ill and feel no one is listening or helping it does become more frustrating. We get accused and thought of as being hypochondriacs and depressives. That it is all in our heads. We get told we are lazy 'couch potatoes' and need to do more exercise. No wonder we end up stressed! And dealing with all this for years on end, having every aspect of our lives negatively affected by it all, the knock on effect, on the adrenals is even more debilitating.
Shame on these so called 'professional' carers who go under the guise of GP's and nurses (Tho' to be honest most nurses are much more understanding, unfortunately they don't generally have the authority to help up)
Could you imagine other professions speaking to people the way some of these Dr do today, and keeping a job! Shame!!!
I wish you all the luck in the world getting yourself sorted.
You have voiced my opinion and that of many many decent people who are truly fed up with the uselessness of OVERPAID and uncaring GPs. It is high time these GPs should be put to the test by independent bodies, similar to OFSTED for school. Many would be seen as "poor performance" and unfit to do the job. Poor teachers work so hard and very long hours, in the evenings and at weekends without any extra cash.... Shame on those GPs.
Meanwhile so many people suffer, having a very poor quality of life, and so many people die prematurely because of a general lack of care. I, like many, despair....
Try going dairy free as well. I have hashimotos thyroid and when I went off of dairy my seasonal allergies improved immensely. When I took my kids off of dairy their eczema cleared up. We also are gluten free as well.
I suggest reading the book, The Autoimmune Fix by Tom O'Bryan. Lots of great information and case studies of people with autoimmune conditions and how they improve removing gluten, dairy and sugar from diet.
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