I had my test results back today.................

When I had my appointment last week I actually had all my symptoms written down so that I could talk through them; constant tiredness ( as though I haven't just had 8 - 9 hours sleep, constant dizzyness, feeling cold, my face,neck stomach so full of water I feel like a camel!)

Anyway; off she went with the usual 'dribble' All tests are fine. As I was so tired & she was wizzing through everything so quickly, (probably so I could really see them), although I did notice that my B12 was only 400 which she said was Fine!

I then asked if everything is fine, why do I feel like this? Well she had 2 bites of the cherry.

1. I am imagining it!!

2. I am stressed. (to which I replied, I am only stressed as I know my body is totally out of control having put 2 stone on in 12 months, when easting an extremley healthy diet as I always have......I don;t even drink alcohol!

You wouldn't book your car in at the local garage with a list of symptons, only to be told 'your imaging it' no your brakes are fine even though when you put your foot to the floor your car doesn't stop! Apart from putting yourself in great danger the garage would be fined severley & possibly struck off any mechanical register!!

Now' this is what this so called GP seems to be doing. When I mentioned the water retention again, she had the ordasity to say 'you never mentioned that'

All Gps now seem to think that we have all the time in the world to waste giving them half information to trot back & forth to justify them having a job! They seem to forget now that it is a service industry, we are not just a name or number on a spreadsheet to fill in their day.

Sorry about the rant, anyway, once I mentioned I was now going private, a warm smile seem to emulate across her face, quickly to be changed to a 'hard stare' when I asked for a copy of the blood test...........Oh I have to ask my secretary, I just said, can;t you just print it off now? Now, she said looking horrified......& there's me thinking,, it must sound like I've just asked her to 'if was here turn to clean the practices' toilets out! And there was me thinking you only have to press a little button called 'print'

I am sitting here, with thermal socks on, along with 3 layers of clothes on; my boobs are so heavy they hurting & every time I eat or drink anything my stomach seriously expands by about 2 - 3 inches. Is this 'normal' for an underactive thyroid?

32 Replies

  • Bloody GPs!

  • hi i am sorry to read you are sooo unwell, i too have been struggling to get help for over 18mths. I too have put on alot of weight, 7kgs in 1 week at one stage, like you as soon as I beat my stomach goes huge. I am now gf and lactose free with some improvement, i have had thyroid tests and piturity tests and waiting on outcome. wishing you well.

  • Yes very normal if undermedicated ..doctors are horrible and I hate them now after all the suffering thyroid patients go through ..I include myself

  • They should take the word care out of the words care service but that would leave the word service.......hmmmm they're not providing us with one.

    That's why we are on here hoping to find something or someone that can help's sad when you read some of the stories except these are reality.

  • So sorry to hear what you have been through but unfortunately, I think most of us have! I too have been to and from the doctors for years and thank God for this site otherwise I would have gone over the edge!

    The answer to your question is yes! You will feel the cold, I had a blanket over me yesterday despite the gorgeous weather. You will feel tired and I also suffered with bloating until I started a gluten free diet and I must admit I am feeling better. You should also get your iron and vit D levels checked as these need to be in the high end of the range for you to feel better.

  • I am so sorry, why can"t anything be done about these people who don"t seem to care about us or our symptoms. It is becoming the norm now for us suffers. I have totally given up & am so ill & fatigued don"t have tests done anymore. Just feel like I want to die because no one wants to help, they just want to kill us.

  • I do understand how you feel here Vanessa. Please don't give up. The depression and sadness and frustration that goes with all of these issues and not being listened to by Dr's and feeling like a 'moaner' does make me feel very depressed and like giving up, but I refuse to let these people dominate my health. Take ownership of it all. Record your results i.e. temperature and symptoms. I see a kiniesiologist in Devon. I can give you her contact details. I take Solgar Vitamin B 50 or 100mg, 'Better You' spray Vitamin D 1000iu. Omega 3,6,7 and 9 by Pharma Nord and Co-Enzyme Q10 by Pharma Nord-it all helps but I still feel tired. I am 51 years old. My mother has more energy than me a lot of the time! I have Hashimoto's immune disease too and half my thyroid surgically removed 18 months ago. I get very down and at the moment I am very tired most of the time but I will get the right medication eventually. Check out Thyroid UK's website, some good info there. It all costs money and I am often too il to work and not ill enough to be on the sick Ha!!! According to them, so catch 22 all the time. However I will not let this beat me. I wish you all the very best.I wish all of us the very best. A heart patient or a Diabetic wouldn't be treated like this. It is appalling. Love and Best wishes.

  • Thyroid Uk have a print out record sheet that you can record your body temp and comments, on their website or make your own.All the best.

  • Poor you. Why not write a letter of complaint about her to the Practice Manager stating that she's done nothing to help you regain your health. These people need to realise that our taxes go towards paying their wages and it's not acceptable to do nothing.

    I managed to avoid seeing a GP for years until a week ago when I saw one who could only be described as a moo.

    Edited to ask whether you can see someone private off the list. As long as you stay with the NHS you'll be subjected to their ignorance and them not doing their well paid job.

  • Yes,I am going to complain,but not to the practice manager, I;ll take it much higher as my sister in law is very high up in our PCC...........Te he he

  • I'm so sorry to hear this, unfortunately this seems to be happening a lot. Please don't lose heart. It's a long self motivated journey which is difficult when you don't have the energy. I've found I have to watch my diet, gluten free, lactose free, Limited goitrogenic, cruciferous vegetables, no soy, limited sugar and absolutely no aspartame. Vitamin d supplements. Hyperthyroidism is a chronic disease - no easy Fix. Keep a food diary and take your temperature every morning. Get your bloods checked for vit d , b12 iron. Try And getta your thyroid checked for Tsh, t4 and t3. I Had extremely low vit d - this caused muscles pains. Much better now. I have gone private and am on Erfa. It's a slow process and I've had to alter my life. The NHS sent me to a psychiatrist... They thought I was making it up too. But my temperature charts showed something was going on. All the best beck x

  • Am so sorry to hear you are feeling so poorly and you are not being listened to by your GP. Am afraid despite NICE advice GP's go on blood test results in particular the TSH level ( the reference range is much higher in this country then in others and it is only once you go over this that most GP's will treat) The TSH is only a chemical signal tellling the thyroid to produce more thyroid hormones ( according to it's level). Sadly many labs won't measure the thyroid hormone levels, Ft4 &Ft3 even when GP's request them.

    You have a right to a copy of your blood test results -they should be free but some surgeries may charge you ink and paper costs. These costs should not be excessive.

    Don't give up. Ring/|Write and request these results. Then post them on here with the reference ranges ( those are the ones in brackets) plus your symptoms. .Start a folder of blood test results -this can be useful in showing your GP that you have a trend of decline -so might help to avoid repeat testing further on down the line.

    Print out a copy of Thyroid UK's list of signs and symptoms, add any others on that you have, not listed and make sure you give your GP a dated copy requesting it goes on your medical records. Read up on good books ( Thyroid UK have a great list/loan library) -a really useful one is called 'Living with Hypothyroidism' by Dr Peatfield.

    I am sorry to say that I went through a similar process and felt extremely ill.. Finally I was diagnosed when my TSh went over by .10! Such a minuscule rise but some how it then qualified me for diagnosis. Thyroid Uk and other organisations have been fighting for a long time to get the TSH maximum reference range lowered ( it is much lower in other countries) and to get Doctors to look at signs and symptoms more as they used to do before TSH came into being back in the 1970's. I only say this so you know you are not alone.

  • Thank you so much for your lovely informative reply......

    The Gp's now seem to 'diagnosing by numbers' .......The computer says no!!!

    They cannot seem to grasp basic medicine of looking at the big picture, actually talking to you, Not at you!

  • I can only agree with what others on here have said and offer you support. sending big hugs jeannie xx

  • God I feel your pain TotallyFedUp!! My last visit to the doctors resulted in me crying all night, I was scared for my health, scared for my future and felt so very very helpless and confused. I also began to wonder if I was a hypochondriac until my husband reminded me that they never diagnosed my under active thyroid in the first place which resulted in me being very ill and having a TSH of 68, instead they gave me anti depressants!! My doctor this time suggested my problems were anxiety, stupid cow, of course Im anxious, its you thats causing it!!!

    I expand when I eat, expand when I hot, expand when Im due on, expand when Im stressed. Basically, Im at the stage where my waistbands need to be elasticated like an old lady and yet Im only 44!!.

    I want to punch my doctor when her eyebrows are raised when you mention the internet. The fact is, if you felt safe and look after with their medical knowledge, we wouldn't have to search the internet for helpful sites like this.

    Im really sorry you experienced what you did, unfortunately we just have to research, research, research and more research to try and help ourselves. It is absolutely disgusting that people with this illness do not get the help and understanding they need from doctors. We can only pray that things change but I don't hold out much hope.

    Sending you lots of sympathetic hugs xx

  • I know how you are feeling going to the Gps these days is like a battle with Hitler.........& you can only discuss one ailment that's if you can get an appointment in the first place..

    Hey just think if you & i went down to the beach we would look like a couple of beached up whales that need to be thrown back in. :-)

    That horrid bloated feeling is so uncomfortable i can only wear elasticated trousers, you feel so heavy & exhausted dragging the extra weight around..

    Dont worry hun it is all in our heads, it would be a different story if it were them or one of there family.......maybe not they would go private, what was i thinking off.

    As if the would sit in an overcrowded waiting room or have the clock against them in a 10min appointment.

    Rant over :-)

  • Welcome to the revolution.

  • Thank you for the link it seems extremely informative, & as we all know knowledge is power.

  • Bully for you. Your experience can be replicated thousands of times over and what is more, these GP's are being paid for every visit. I have given mine the bums rush and will find my own way to good health. I sent off for some NDT but it has come back has Armour Thyroid from the States. It cost me £49 for 14 weeks and 2 days supply, but I had to pay another £16.25 for VAT. import duty and handling charges. What have we got a NHS for or indeed GP's. who will not listen to their patients. Having said that, from records of patients of a Glaswegian Dr.Skinner,RIP, there is proof that there are still wonderful doctors who do listen if only we could access them. Time and money would be saved if we were all put on the right medication.

    I am pleased to see that you still have your sense of humour and you certainly made me smile

    You will get there in the end. Good luck and good health

  • Hi, Thank you for your reply, no one will ever destroy my sense of humour, it's the only bit that keeps me sane!

    Today, whilst pottering around the garden having a running battle with some very large overgrown weeds, my imagination as usual started to wander...........every time a dug the spade into the ground to evict another dandilion from my garden; well it had been squatting there far too long, feeding itself from my lovely nutritious earth, I can't count the free Vit D it had enjoyed or drinking the rain.

    I wondered.........Dandilions are rather like NHS GP's........A total waste of time & effort; always come up with same results, yellow flowers,seeds, rather like our blood tests.............

  • Yes, and the G.P.'s are a bit like Bill and Ben the Flower Pot Men and they need to be weeded out like your dandelions (otherwise known as "pee the beds"), The ignorance defies belief but this site brings some light relief. One or two participants have had me splitting my sides laughing. I wish that i was artistic and could draw some cartoons which would lampoon the narrow minded twits.

    Thanks again for the laugh and hopefully you will finally get the medication you require. The epetition needs to be dramatically increased so that we can get more choice and challenge this intransigence in certain G>P.'s and other so called professionals

  • I expect they have just tested TSH which is unreliable. Search on TSH for more info.You may like to consider getting a thyroid profile blood test done privately by blue horizon (you get a discount if you mention this site)there IS one test which does TSH,free T4, freeT3 and thyroid antibodies. It is the T3 result that is most important as it is the active hormone. Some of the GPs at my surgery are a nightmare - everything gets blamed on stress or pain- telling me to take more pain killers or antidepressants. Another GP is prepared to listen so I try and get him whenever possible. Good luck.Sandra

  • Thyroid UK's website has lots of good advice on getting diagnosed. I too have been struggling but did get a print out.

    You have a right to see your medical records under the Data Protection Act 1998. Guidance on The Data Protection Act 1998 can be found at:

    •Do not just accept “normal”. You should always ask for the actual figures of your test results.

    Don't give up

  • And now the GPs have the audacity to be considering charging everyone who visits them!!

    We might as well pay for private treatment, or buy our own medication which will get us better, rather than pay NHS GPs to make us more ill.

    I had undiagnosed Graves' for nearly 6 years, unable to work, not entitled to any State benefit (because I'd been self-employed and hadn't paid the "right contributions") and had to pay for prescriptions for a long list of totally wrong drugs. If I'd had to pay for every visit to the GP as well, I would be even worse off than I am now. At least now, I've reached State pension age, but have lost so many precious years and the ability to earn more money.

    Then, on finally being diagnosed by another GP, in my ignorance, I allowed the endos to give me RAI far too soon & had a horrendous 18 months before becoming profoundly hypo. Even more horrendous, gaining 2 1/2 stone in weight over about 4 months, so breathless I could hardly walk and being told I probably had heart failure! My TFTs were "normal", therefore it was nothing to do with my thyroid.

    Fortunately, I eventually discoverd Dr. P., who put me on the right track, but because my system was so totally wrecked, it's taking a lot longer than he expected for me to recover. I'm now on NDT, which I think will suit me better than the T3 only regime. There is no quick-fix, one-size-fits-all, as the NHS docs like to think.

    Rant over for now! Stick to your guns.

    P.S. I've lost 2 stone of the extra weight, which was mostly fluid, in less than a year. Obviously due to correct hormone treatment.

  • Wey hey, it's great to hear that someone has lost some 'serious weight' Ok not as quickly as I would like, but then again, I am just a grown up toddler!!!

    Go Girl........Go!!!

  • I have been with my current Health Centre for over nine years now, I changed because we moved house. For the first 5 years he was great, patient, reassuring when required and supportive. I have a catalogue of ailments, an implanted Pacemaker/Defibrillator 2001: Depression: Macular degeneration: COPD: Asperger's Syndrome: underactive Thyroid: Osteoporosis: Prostate issues (need a biopsy). All of these as they have been identified have added to the list of repeat prescriptions which should number 18 pills a day plus 3 inhalers. A walking Chemists shop!

    It was only after I did some internet research that I began to realise I was being prescribed drugs to counteract the side effects of other drugs and I got seriously concerned. I began to question my GP and ask for a serious look at what drugs I could stop taking.

    From that point onwards our relationship went downhill, it was as if I had questioned his professional judgement. My reaction was typical of someone with Asperger's Syndrome, I become obsessional about enabling a better understanding of each drug and the side effects. I hated chemistry while at school so I did not seriously confuse the research with too much chemistry, just an understanding and analysis of all the drugs, all the side effects and the side effects I had experienced.

    Faced with the analysis my GP was actually dismissive and made no comment when I asked whether I could stop taking one drug, he just 'huffed' turned away from me and changed the subject.......

    For example, I receive a monthly injection into my left eye of Lucentus, for me this marvellous drug has saved the sight of this eye. But the drug I take for my prostate issues is number one on the Lucentus manufacturers list as a no no ! When this was questioned I was told emphatically that hundreds of men my age were receiving both without problems when my reaction to that was that statistically that gave me a higher probability of being the one to have problems I was treated like a schoolboy.

    My reaction has been twofold, firstly and I know the results will be on my shoulders if they go wrong, but gradually I have stopped taking two of the tablets. Firstly the weekly dose of Alendronic Acid 70mg for Osteoporosis [the instructions are take 30 mins before food with water and do not lie down for 30 minutes afterwards....... Then I stopped taking the Levothyroxine 125 mcg per day and my COPD issues have been much more comfortable]

    Secondly I am of the opinion that because us 'wrinklies' are becoming more knowledgeable about things and because we are living longer and giving them more to do 'they' get irritated and dismissive. Probably assuming in my case that I am a Victor Meldrew clone.

    By the way, my last GP nearly killed me off. I went to him with a very uncomfortable pain in my right arm and he asked me what I thought it was so I said 'possibly a heart problem? too which he said 'wrong arm, go home have a good fried breakfast and spend the day in the garden' Two hours later I was in an ambulance with blue lights and two tone, two days later, in hospital, I had the first of three cardiac arrests and was resuscitated. That GP has since retired!

    No apologies for a long winded maiden contribution.

  • Welcome to the forum, Gardener.

    My COPD issues cleared when I stopped Levothyroxine for 12 weeks and a spirometry test showed I had 97% lung function.

    How long have you been off Levo and how are you feeling without thyroid meds?

    Did you stop Alendronic Acid because of drug conflicts or because of side effects. I've a Dexa scan next week and AA is the likely treatment if I have low bone density.

  • Three days and the effects were nothing short of amazing, today I walked over 2.5 miles with heavy breathing only on the steepest inclines last week 100 yards and I was completely done for. I am sleeping better and have more enthusiasm for my plants they depend on me! I have had no headaches only remaining problem is really uncomfortable night sweats.

    I am not by any means feeling anything other than a lot better and can happily adjust to working for twenty minutes and reading or very light tasks for 15-20 minutes.

    I do not know how significant it is yet but beforehand in addition to shortness of breath when walking I also experienced very painful hip joints, not any more so far.

    I had my Dexa scan three weeks ago and am waiting for the result, at present I take a daily double dose of Calcichew 500mg. It was he list of potential side effects that disturbed me about AA plus a friend in Atlanta who said her Consultant said he wouldn't give to his mother. Apparently Dentists are complaining about it as well but I cannot validate that.

  • Thank you. I've a dental appt next week, I'll ask him for his opinion. Endo is prepared to prescribe an alternative if I need it, so I'm doing my homework.

    I had awful muscle and bone pain on Levo. I was unable to raise my arms high enough to comb my hair. I was also vitD defcient so that may have been responsible for some of the soreness and pain.

    I'm glad you feel so much better without Levo. I was so pleased to know I could feel well again. I did too for almost 4 weeks but my TSH shot up so high I did feel very unwell in the 4th week and started T4+T3 combination. Do be alert to your TSH rising. It's better to nip symptoms in the bud before they crack the paving as it were and there is alternative medication to Levothyroxine.

    I hope you continue to feel well :)

  • Thank you I will keep a weather eye open, I am due for blood tests in three weeks so that will be the proof.

    I have just started Azithromycin for COPD as a long term antibiotic (3Xweekly) this after being on antibiotics since last November. Believe or not there are over 30 listed side effects on this ranging from 'very common' to 'rare' 2 months ago I started keeping a diary of how I felt including SATS blood pressure and pulse should be interesting in a few months time.

  • Yes, a symptom's diary is great for tracking your health, especially when you start on new meds. My diaries suddenly stop. That's when I feel ok and don't have anything to record. :) Can be very lowering when you look back and are reminded how dreadful you felt.

    I think there is a temperature template on that you can use to plot a graph.

  • Sorry to put my twopenneth in but someone mentioned you wouldn't treat a heart patient like they treat someone with throid problems - I can only speak from my experience to say that is wrong - I am under active and besides other problems I have an aortic stenosis and mild heart disease and angina my GP has said to me on several occasions that he is not convinced I have a heart problem despite the fact that I have had consultant letters from two cardiologists to confirm my diagnosis. After one visit after tests my cardiologist wrote to him to say I was being over medicated and they were stopping my beta blockers again he glanced at the letter said there is nothing wrong with yr heart we are stopping all your medication. When I left the surgery I came home cried again and then got mad and thought he is going to end up killing me - I didn't have a copy of the consultation letter so I rang the British Heart Foundation spoke to a cardiac nurse gave her my symptoms and asked if it could heal itself she confirmed no it couldn't so I then called the cardiologist secretary and told her what he had said she said that wasn't the case at all they just wanted to stop the beta blockers. I complained in writing detailing what had happened and bot a written apology. The point I wanted to make is to be informed I would never take my GPs word over a consultant a GP is a general not an expert. None of us should have to keep battling to get the best care we are fighting an inward battle on a daily basis that should be enough

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