How ill did you feel before diagnosis?

The reason I ask is my GP rang me today regarding my recent blood results. My TSH hit 9.28 last May, Ft4 was 14 and Ft3 was 5.3. I was put on 25mg of thyroxine. It came down somewhat by July. In September I started 50mg of thyroxine and by November my TSH was 2.6,, FT4 was 19 and Ft3 5. All pretty good and my crippling fatigue was getting a little better. Then last month I had a tough month with an anxiety setback due to some stress. My fatigue and weakness hit hard again very much like how I felt for the first 6 months of last year before thyroxine. I had a thyroid test last week and my TSH was 5.7, Ft4 17 and FT3 5.0.

My GP rang today and he has now worried me and made my anxiety worse. He has also made me feel like I am not this fatigued due to my thyroid as it's not even that bad at a TSH of 5.7. I felt so unwell last year, I spent months almost crawling around my house, weak legs, feeling cold, drained and I had energy crashes that hit if I went out and did too much or if I over did the housework I'd end up in bed for a day or 2 with weakness and bad fatigue. Awful. The crashes had lessened but recently are happening again. They hit if we have visitors I end up bed ridden. They hit if I even just take my children to the park, I will feel so weak and ill for a good 24 hours after. It's horrible and this last year has made me very anxious and agoraphobic.

I explained to my GP today on the phone that I'd had chronic fatigue for a year, which he already knew but he didn't realise it had been daily for a year, do they ever listen?? The thing is I gave up seeing him for 7 months last year and battled on myself. When I saw him in November I told him I'd had chronic fatigue all year and that was why he ran that mountain of tests. He did full bloods, folate, b12, blood film, ferritin, liver function, kidney function. ceratine kinase, nuclear antibodies, random sugar, hba1c, glandular fever... he ran loads and all ok other than sodium which soon corrected itself. Potassium was 3.4 and range starts at 3.5 but they weren't concerned. Then today he said random sugar was 8.9 so he wants to monitor my HBA1C every 3 months even though that at 35 showed I didn't have diabetes. He has now concerned me why he wants to re test it, he said high sugar can cause fatigue so he wants to monitor me as 8.9 was high. He is implying the faitgue is due to high sugar I have. I feel he isn't taking me serious or believing that thyroid can cause chronic fatigue. I feel I am going into another year of tests that show nothing and are putting me through more and more anxiety. I thought after that mountain of tests in November he would accept it was thyroid and stop making me have more and more tests. He said after 2 weeks on 75mg of thyroxine which I increase as of tomorrow, he wants to see me to do more tests and examinations???? He said if my energy levels don't pick up after 2 weeks he will be concerned, that raised my anxiety even higher. It's no wonder i am an anxious wreck this last year. I have had chronic fatigue for a whole year and noone will confirm it's just the thyroid and I keep being poked and prodded.

So after that ramble, how unwell did you feel and how high was your TSH/FT4? My GP seems to think a TSH of 5.7 even thought it's more than doubled what it was in November, can't be causing my chronic fatigue. I am just curious because my GP has made me feel like I am either making this up or he is convinced something else is causing this.

Julie

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  • Jingyd35,

    It will take 7-10 days to absorb the dose increase so it is premature to expect improvement in a fortnight. It is more likely to be 3-4 weeks after increasing dose before you start to feel some improvement. TSH 5.7 is plenty high enough to cause most people extreme fatigue and even when TSH, FT4 and FT3 are optimal symptoms may lag for several months after.

    Your GP doesn't know what is causing your fatigue which is why he is doing blood tests. Most blood tests are done to exclude a diagnosis rather than confirm it. You don't have to consent to blood tests if you're convinced your thyroid levels are causing your fatigue and want to wait for symptoms to improve but you will be stuck with a bucket diagnosis of CFS if you don't have the tests your GP suggests.

    Some people have TSH in the hundreds when they are diagnosed incidentally during other tests and some people are barely able to function with TSH >3.0. It doesn't matter how high TSH is or how FT4 and FT3 are, how they affect you is what is important.

  • Thank you Clutter.

    I had a list of tests done last year. I had all those tests I mentioned in my post only in November, he said that was to confirm only thyroid was causing the fatigue. The GP i used to see diagnosed chronic faitgue and dismissed thyroid but this GP has diagnosed thyroid and treated it with a gentle nudge. He diagnosed subclinical last January when TSH was 6.8.

    Last year I had my thyroid tested and all my vitamin levels, antibodies etc.. a fair few times. So I have had a mountain of tests. I have had a lot of them and now I feel he wants to do even more.

    Julie

  • Jingyd35,

    Chronic fatigue is possibly a misdiagnosis as your previous GP dismissed low thyroid. If your current GP doesn't think TSH 5.7 is causing fatigue and the tests you have had to date don't explain why you are so fatigued then your GP will want to run more tests to try and find out why.

  • Yes the previous GP a year ago before I switched, he said my TSH at 6.8 wasn't high as I had negative antibodies, therefore you can't have hypothyroidism without positive antibodies and he told me off for telling him he was wrong.

    I am just so fed up of the tests and worried what else he will want to test, I have had so many and more than most have to diagnose CFS and I have a thyroid results which show an issue.

  • Jingyd35,

    Look at it another way. The tests you have had have ruled out other illnesses causing the fatigue. I would prefer further testing which will either rule out illness or find a specific cause rather than live with a bucket diagnosis like chronic fatigue which means you get little help and are expected to get on with it.

  • Thank you.

    I agree of course but when they've found nothing so far it makes me wonder what else they want to test for which raises my anxiety levels.

  • Jingyd35,

    If you are content that CFS and hypothyroidism are causing your fatigue and the additional testing is raising your anxiety tell your GP you don't want to have any more blood tests or investigations.

  • I may tell him to hold fire on the HBA1C as I want to see if the levo increase helps. He has tested so many things and all clear, I need a break. I am absolutely exhausted and an anxious wreck with it all this last 16 months.

    Thank you

    Julie

  • I think a rest will be good as our heads are spinning with 'what's wrong' I'm already taking hormones why haven't I improved etc. etc. or I feel worse and GP doesn't believe me.

  • The more I read people's experiences on here the more angry I get! Angry for the way people are treated with such a serious illness for so long. He was totally wrong of course you can have hypothyroidism without raised antibodies. That tsh is raised. I felt awful before mine even did raise even though my t4 was right at the bottom of the range so no wonder you feel so bad. Can you completely change Gps at all? Sounds like these ones need sending back to med school. They should have got a big Fail.. for this section of the course/exam.

  • Thanks Katie

    I feel I am constantly being poked and prodded for more diseases and when he finds nothing he leaves me for 3 months then suggests more. I am an absolute anxious wreck and almost housebound with the fatigue and anxiety this last year has caused. I had my cortisol tested 2 weeks ago, a saliva one and it was high, I'm not surprised with all the stress I have been under.

    I am so tired of it all :-(

  • I am so sorry I was like this and it is absolutely awful I know. Especially when you have kids to look after as you feel so guilty because you just can't do anything. I ended up just self medicating which isn't for everyone but it makes you take charge of your own health and life and let's face it there are some terrible doctors out there. Even staying under their care you will probably never get well again. Sometimes it's a case of sink or swim and some people get pushed to that point sadly.

  • All of last year was awful. I had chronic fatigue, energy crashes doing anything and I felt a complete burden on my husband. I ended up agoraphobic and still am. I feel a terrible wife and mother right now and my anxiety is high because of it all.

    I changed GP but I can't change surgery. At least this GP diagnosed thyroid but for some bizarre reason wants to keep doing more tests to find out why I am so fatigued and anxious lol! He is a good GP, he was the only one that listened and ran tests and diagnosed the hypothyroidism, all other GP's said there was nothing wrong with me as I had no positive antibodies.

  • You tsh results are still not good though if your tsh is still raised. I had severe depression and anxiety for years and was agrophobic also for a while so I totally understand. It almost went into psychosis thanks to being put on absolutely maximum levels of anti depressants for years. It's been a slow process but since monitoring my own bloods and self medicating my depression and anxiety has totally gone. You may just fuction better when you are in the top part of the range and your tsh is a lot lower. Hormones are such weird things they effect everything even down to our basic functions. You are not a bad parent or wife you are just very ill and need to get better x

  • I'm so worried this is me forever. My anxiety and agoraphobia got worse this last year so I'm certain it's related to the thyroid.

    I'm on anti depressants. Low dose 15mg of mirtazapine as I was a wreck after my brother attacked me and I couldn't eat or sleep. It worked wonders and I'm much calmer on it but my health anxiety runs wild with everything the last year and the fatigue and weakness led to anxiety and agoraphobia. I've lost all confidence and feel so much of a burden on my husband being so needy. He takes the children to their appointments, he does the food shopping etc.. I feel so guilty as they were all things I was doing..

    Thank you for your kind replies.

    Julie

  • My husband was the same to be honest he did and still does a lot for me but when I am OK I make it up and I am sure you do or will. I am very sorry about your brother doing this. I was in a very abusive relationship for a while and had a full on break down during and after that relationship but got out as soon as our daughter was born. When I stopped the anti depressants(because non worked properly really). I first focussed on my vitamin levels and slowly I started to get better. Then my thyroid condition came to bite me full force on the backside lol! I suspect the anti depressants just suppressed my thyroid condition for some time but I know that's not the same for everyone. Doctors just wouldn't listen to me and wouldn't re test so I eventually had to self medicate but I still use them for the things they are good at. I lost a lot of faith in them when my dad died due to doctor negligence also. May be worth considering doing a blue horizon test just to check your overall levels of everything. I hope things get better for you I really do x

  • Thanks Katie.

    I do, on better energy days I blitz the house, he has no jobs to do. Tea is on the table every night and I look after the kids. I still do a lot despite the fatigue.

    I have had blue horizon full thyroid test with vitamin levels. Had the same on nhs. All ok. Ferritin is a tad low at 34 but it'd been low since I was in my late twenties. I'm now 37. I feel about 97 though.

    I stay on the anti depressant because I sleep and eat now. I've been on it 3 years now and not up to coming of it yet with all of this going on. I often worry its added to my health issues but that is probably just my anxiety talking.

    I'm glad things have improved for you. I'm sorry to hear about your dad. That's awful.

    Huge hugs xxx

  • If you don't have sufficient thyroid hormone replacement you will have some of these symptoms. I'll give you a list and you will be surprised there's so many and GPs know none.

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

    Despite me seeing/listening/operation/diagnosis - wrong several times - not one of the doctors/specialists did a blood test for thyroid hormones whatsoever.

  • I match over half of those at least. I printed that and sent that to my previous gp last year and he made fun of me for sending it him to read before our appointment. He belittled me.

    Thank you.

  • Maybe he was covering up his ineptness of how to diagnose and treat patients properly instead of inadequately due to the guidelines.

  • Well he told me I couldn't possibly have hypothyroidism with negative antibodies lol. That's why he dismissed this list of symptoms I ticked.

  • He knows zilch. That's why we have two different diagnosis. i.e. Hypothyroidism and

    Autoimmune Thyroid Disease.

    Hashimotos as you and I well know are due to having antibodies. Print off these two pages below and educate your doctor as he is ruining your health.

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

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

    So the 'real' name of your thyroid dysfunction is Autoimmune Thyroid Disease:

    Have you had all your vitamins/minerals tested?

  • Good links thank you. So if my thyroid antibodies we're normal then I 100% don't have hashimotos? Autoimmune thyroid disease.

    I read 90% of thyroid cases are due to Autoimmune thyroid disease and 10% not. I guess I'm in that 10%?

    My antibodies were tested twice before I started levo and we're both times normal.

    Yes I've had vitamins all tested twice last year. B12 was low in 2015 so I supplemented and it went from 212 to 1070. Ferritin always been low but got it to 49. I can't take iron tablets so I use liquid iron. My HB is normal at almost 15 so I'm not anaemic. Vitamin d was about 73. Folate normal I think it was 18. My gp even checked them all in November.

    Thank you

    Julie

  • My vitamin d result was after 3 months of supplementimy, I've no idea what it was before as gp wouldn't test it so I used Blue Horizon.

    My ferritin has been low over 10 years, as low as 8. It was 15 a year ago.

  • Doctor's appear to know little so why consult people who have no knowledge? Maybe better to go it alone. This is from Thyroiduk.org.uk

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

    From the above you will see that we can hypothyroid with a TSH of only around 2 so should be treated until it is 1 and/or lower if you other results are alo interconnected.

    After being diagnosed and given levothyroxine it should be increased until TSH is 1 or lower. i.e. until we feel well. Doctors are doing us a dis-service when they only take notice of the tests and not the patients' symptoms which are disabling.

    It appears to me that CFS or fibro are interconnected to the thyroid gland (I'm not medically qualified) the reason being that nowadays we are only diagnosed due to the blood tests that we are undiagnosed. As far as I understand CFS or Fibro were 'new' conditions which were named after about ten years after levo/tests were introduced, so I reckon that before that time we were all given trials of NDT and if we improved we stayed on NDT. We were given sufficient to erase symptoms.

    You have to have a TSH 1 or lower and some need it suppressed.

  • Thank you Shaws.

    I had so many tests only in November, and all ruled things out but now he's picked out the random high sugar and said it could be that causing my fatigue despite the other test ruling out diabetes. THen he said if I don't improve after 2 weeks on levo at 75mg he wants to run more tests again to find out why I am exhausted every day. I feel so anxious with it all, because I am not being given a definitive answer. I feel i am coping alone with it and my anxiety is constantly getting worse with it all. Why can't I just have a thyroid issue or cfs or whatever they want to call it? :-(

    Thank you

    Julie

  • Dr Skinner, (RIP) was against the BTA for all the right reasons. People remaining undiagnosed, and in particular being given too low doses which can result in disabling clinical symptoms never mind remaining undiagnosed. A dose which is too low can backfire on us and we can feel much worse. We cannot rely on many doctors. I'll give you a link and excerpt of what Dr S said. Most of us feel well when TSH is below 1 or even suppressed. Doctors have been told, or assume, it's bad to have a low TSH and I doubt we've had a test for thyroid in the past when well. They make a huge error in believing that once on levothyroxine anywhere in the range is fine when it should be 1 or lower to alleviate sympoms.

    The main purpose of taking thyroid hormones is to make us feel well, but many of us actually feel worse than before being diagnosed and on too low a dose.

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

    worldthyroidregister.com/Go...

  • Thank you Shaws.

    I felt much better energy wise once my TSH was at 2.6 and was so less anxious. Then it crept back up and I am anxious again, fatigued and having weak thighs. I told my GP all year I was having these symptoms and it was only once on 50mg a few weeks that I felt a bit stronger, not 100% but I was 50% better than I was the first 9 months of the year. I reminded him of that today and he said we would increase the dose to 75mg but then put a time limit that if in 2 weeks my fatigue wasn't better we would do even more tests. Which seemed strange seeing as he did a full MOT and more, in November. Not that long ago so I don't see why he is repeating things when all was good. The random sugar at 8.9 is what he is clinging to now and he is trying to make out that is why i am tired but my HBA1C shows I am not diabetic so it's another useless test. Putting me through more anxiety. I need my TSH down to 1 and hopefully I will improve.

  • HI Julie, you mentioned earlier about having Cortisol tests. Said they were high but nothing further. What did your Dr say about those?

    I am not a medic either, but what I do know is what I have experienced and put up with all my life, now 55. It took me over 35 years to get mediation right, and that ended up being through Dr P, not any GP (Though my first GP was much more understanding - unfortunately I moved)

    The thing is that for decades I struggled to get medication - struggling with increasingly debilitating CF, migraines and fibromyalgia, being told I was 'depressed', 'lifestyle tired' and one specialist more or less said 'couch potato'. Lovely! (This when was running around like a mad woman - teaching)

    I would get my boys to school with such effort and crash not eh sofa, unable to lift my head. I went for years, trying to 'manage' this - trying to fight through it, I was not someone who would take time of work, and sit around all day, but I eventually had to give up my job, I just couldn't cope with the stresses involved on top of a lot of family stress.

    So that is when I went to Dr P. He explained that when the thyroid has struggled for a long time, and is failing, that the adrenals try to compensate, but they too, eventually become compromised.

    If your adrenals are not right, and you do sound like you are and have been under a lot of stress, not surprisingly, but if they are not right you will never get your thyroid sorted. Low adrenal function will impact on conversion and uptake of medicines/hormones.

    I would urge you to give this further consideration as I know, for me, that seeing and working with Dr P, being told (did do private tests to confirm adrenal fatigue) but Dr P sorted me out for several years, with supplements and adjusting my medication. I ended up on t3 only and a few years ago, when meds settled, joined Slimming World and lost 4 st in 11 months! And found it so easy.

    Again, having had an awful lot of stress in the last two years, and ongoing, thought hopefully seeing light at the end of the tunnel now, adrenals took another major hit and I lost my way a bit again. I went back to Dr P recently (took opportunity to see him again, when I took my son in Jan - son is struggling with adrenal fatigue, possibly inherited, rather than thyroid)

    Hopefully both getting back on track - but if it is your adrenals it may be something that you have to get right and keep right first, before you can address your thyroid issues. They are so closely linked and I cannot understand why GP's do not even consider adrenals and Cortisol levels when dealing with HypoT patients who are not doing well on meds given?

  • Thank you.

    I totally understand what you're saying about adrenals. I tested my cortisol via a saliva test with Genova as recommended here and they were high? You may find my post with results for on my 2 weeks back. I didn't bother to tell my gp as I knew he wouldn't understand it or accept it.

    My cortisol was high so I guess that's not the same and when adrenals are running low?

  • I don't know... does the high mean that you are producing it but not using it? i think my tests were with Genova, about 7 years ago. And I know what you mean, GP's won't recognise adrenal problems until you are at deaths door! Bit like saying we won't acknowledge cancer until it is terminal!!! My cortisol test came out saying it was at level 5 indicating 'Adrenal Fatigue'. I do still have my results somewhere, I will try to find them and see if I can find your earlier post and maybe compare. As I said, I am not medical and get confused with things being high and low! I wonder if there is someone else on here, who can advise you better. Trouble is, when you are 'low' it is hard to concentrate and really get to grips with the ins and outs of all the levels, there are so many things to consider and take into consideration. It is just such a sad state of affairs that we don't have the support of our Gp's, who would rather ignore us and make us feel like hypochondriacs. Can we all be so? I will come back to you later, re the Genova tests... I can't even look it up to see if Dr P's book helps as recently given away the second copy I had to someone else suffering! Need to order another. Fast!

  • Thank you that would be great. The conclusion Genova wrote was chronic stress was causing my high cortisol.

  • Sure high blood sugar can cause fatigue ,but if it is poor thyroid causing it then monitoring the blood sugar ain't gonna fix it!

    He is right though. Even if it is just one off it is worth retesting.

    But giving you two weeks to feel better is sadistic and wrong. Knowing you have anxiety he shouldn't say it. It is WRONG!!! He is putting you under a lot of pressure for no reason. There is no reason for him to limit the time as even 75 mcg might not be enough for you to feel well.

    If you can't find a new doctor, order your levo online so you can try the necessary increases long enough.

    Was it proper fasting sugar from time you were able to get tested early in the morning?

  • Hello Justina

    I have been crying all day. I am ill with a virus, I didn't mention it but he asked if I was ill over the phone as my voice was croaky. I said my daughter and hubby had been ill with it, my daughter had it 2 weeks. He said if I am no better by Monday he wants to come and check me at home? I said well it's a virus is there any need? again worrying me. I have a cough due to a tickly dry throat, weak, fatigue and general viral symptoms. Now I have anxiety on top lol!

    No it wasn't fasted, it was a random sugar done around 2pm. I'd had a Nakd bar just before the test which I am told has 4tsp of sugar in it lol!!

  • Ohh he is now acting very stupid as you have normal symptoms of a virus. I understand you are upset!

    Ok so if you had eaten sugary stuff before the test ,it really isn't that bad. I wonder if he got his papers from a lottery :P I don't understand why he wants to scare you this way. Although some doctors are bullies. As harsh it sounds some just are. I have met two in my life and first one threatened me with psychiatric ward unless I take antidepressants and bentso.

    I hope your doctor grows up or finds his backbone and quit acting like 3 years old. No wonder you feel more anxious under a care of heartless idiot.

  • He made my anxiety worse. I said to him I have a virus, I am only 4 days in. My daughter was ill for over 2 weeks, now my husband and my son has just come down with it. I have been taking care of them all, all with having chronic fatigue so no wonder it's floored me, it's a nasty virus for a health person to get. He then said 'well there is out of hours at the weekend if you get worse or call me Monday'. I felt worried sick, does he think I can't fight a virus off.

    I used to see another GP at the practice for about 12 years, he was fab then last January he insulted me when I challenged him over my thyroid results. My TSH was 6.8 and he said I couldn't have hypo with negative antibodies and to basically stop undermining him. He had the degree after all. His words were 'we don't know what to do with people like you Julie with chronic fatigue and good test results'. I then changed GP and he was lovely and diagnosed subclinical hypothyroidism and has treated me but he often last year when we spoke every 2 months on the phone, he would say 'well mood effects our energy levels' He would blame I depression and at times blamed my anxiety for my fatigue but now he is wanting to run more and more tests and making my anxiety even worse. I have become an anxious wreck this year and housebound, I feel an absolute idiot but this chronic fatigue led to me feeling so weak, huge energy crashes doing anything like a park with the kids, or a short walk, that I ended up too ill to go out and now I have severe social anxiety and agoraphobia. It's been the worst year of my life.

    Sorry to have offloaded there.

    Julie

  • Your doctor is not wrong worrying it could be something else as well but scaring you with high blood sugar and all is so wrong.

    He might worry you have influenza and with limited energy it might be hard to fight off, but still giving you impression of you being so unhealthy for various reasons isn't helpful.

    He has no clue how to deal with anxious patients. Unfortunately doctors sometime cause more anxiety than cure.

    You are not an idiot. You are ill.

  • He has left me with the concern that I can't fight this off myself and I am worried about the virus now and I wasn't before lol!

  • I understand! But not much you can do about it at this moment.

    Rest as much as you can even though you take care of your family too.

    I hope it passes fast so you don't have to stress about it for too long :)

  • I'm not knowledgeable enough to give you medical advice, but one thing I hear often is it's not about the numbers, it's about how you feel (of course you'll feel better with a TSH under 2). Don't let the results make you anxious, just know that you will eventually get better and find balance, and de-stress, it's so important.

    About your question, my TSH was 12 when i first had my thyroid tested, 2 weeks later when they re-did the test TSH was 20. I thought I had a flu, but other than that I hadn't noticed the exhaustion, weight gain, cold hands feet, etc. I only realized how sick I was once I was put on Levo and started feeling better, so I have to say a big part of it is in your mind, and you can freak yourself out and physically feel sicker. Don't worry about TSH of 5.7, it's just a number, you'll get it down. Good luck!

  • Exactly, once on 50mg after a few weeks I felt so much better and by that point I'd been ill a year with chronic fatigue and weakness. I was 50% better then myTSH rose again and now I am back to weakness, fatigue and the energy crashes doing little things that should not make me tired.

    Thank you for your kind reply.

    Julie

  • When I was diagnosed in 2007 my TSH was 177.7. I felt down, cold, heavy periods, hair falling out, dry skin, no interest in anything, husky voice and severe consterpation etc. My mood swings and lack of interest was so bad that my husband left me for another woman. I still managed to work full time and run a home with 2 kids but remember crying at the drop of a hat which wasn't like me. Had been going to the Dr for years but they never tested my thyroid. It finally got tested at the hospital after I had my appendix out and was still getting tummy pains. I wasn't over weight though.

    I still have severe bowel problems and had 1/3 of my large bowel removed 2 years ago. I'm on 150mg of lethrothyroxine. I do still get tired and find it hard to loose weight. I get anxious sometimes and find brain fog a problem.

    I got back with my husband after 18 months apart and we are very happy now. My twin sister also got diagnosed the same time as me. I'm on a gluten, dairy and soya free diet but that is mostly for my bowel condition. I would say you need more thyroxine medication. Hope you feel a bit better soon.

  • Thank you so much for sharing your story with me.

    I'm sorry for what you went through but I'm glad things have improved and your saved your marriage. I feel I am a terrible burden on my hubby like this, I often worry what if he left me because I'm unwell and rely on him so much. He's an absolute star and I'm so lucky to have him. He makes me a hot water bottle at night and sends me to bed when he gets in from work. He takes over with the kids and loads the dishwasher. We help each other. He's amazing.

    Thank you

    Julie

  • At the time I had no idea I was so ill. When I got my results at the hospital with a TSH of 177.7 I was not aloud to drive home and they were amazed I was still alive let alone leading a sort of normal life working etc. I was only 7 stone but had lost 2 stone in 2 months through the stress of my husband leaving me. I just wish doctors would listen to us more and test for thyroid conditions instead of thinking we are just being needy. I eat healthy food now than I ever have done but am also heavier than I ever have been. Best of luck to you x

  • Thanks.

    I agree gp's need further training about thyroid aa it must be such a common condition they come across daily. My gp doesn't seem to understand why I'm fatigued or weak everytime I need an increase. I just hope this 75mg helps and I start to feel much better soon. I started the increase today.

  • (((Julie)))

    What a sh*t time you're having. It truly is about how you feel and not their bliddy tests that matter. I'm really sorry to rain on your parade but in my experience if you have caught a virus expect to feel less well and have the virus hover for longer than your child(ren) and hubby suffered it...just another crappy symptom of our condition.

    The first TSH I can find was done not long after I moved to Kent, and it was 2.97 then. Fast forward twelve years to 2011 when I was diagnosed 'borderline' the only borderline I felt was borderline alive. I honestly thought that I must have some awful terminal illness. I was put on 25mcg, raised to 50mcg and then my sadist GP told me I couldn't have an increased dose as my TSH was now 4.5 ( top of the freaking range ) and, being in range, I was 'well'. Do you know of another condition where your GP can tell you that you're well (subtext: 'go away and let me deal with the really unwell...') when you feel so ill ?

    At that point I was eighteen months in, and four stones heavier. Now I self medicate with NDT and T3 and at least have a life back, although still a hefty mare :) - probably my knees continue to hurt because of the weight they have to carry !

    You really have to put your shoulders back, take a big old breath and refuse to live this half life. So your options:

    Change your doctor. He sounds an absolute plum. But then, so are most where the thyroid is concerned and it may not solve your problem.

    Take your health into your own hands, self educate and self medicate. There are many who will help and a plethora of tomes to read.

    Carry on as you are, cowed down by your clueless doctor and live a life which is likely to get smaller and smaller, the longer it's continued.

    As Renton says in a favourite film, 'Choose life.'

    Good luck xx

  • Thank you so much. I agree. I'm living a half life. It's awful.

    I'm just so upset. Why more tests. What on earth will he want to test next if my energy doesn't come up on 75mg? I know he's being thorough but he's adding more and more anxiety onto me.

    This last year my anxiety and ajdgrpaohobia hit hard all because of how weak and fatigued I was. The longer I was at home unwell the more low and anxious I became. Now I have social anxiety and can't cope with visitors or attend any social function. All the things I could do after I overcame anxiety a couple of years back. This thyroid has turned my world upside down and I feel a complete burden on my husband and less of a mother to my kids. He does their appointments, school functions etc.... being so unwell this last year I've missed out on a lot. I forced myself to my daughters last Xmas concert in church last month. I stayed the full hour and was so proud of myself. I crashed for 2 days after and I was in bed unwell with weak legs and fatigue. My gp doesn't seem to think that's normal with thyroid and why he's running more tests as he doesn't think I should be so weak or fatigued.

    I have chronic if stress as I have ptsd and ongoing family turmoil with my extended family which I'm sure adds to how unwell I feel. It's why I had a huge anxiety setback in December knowing I'd have to see my mother and sisters at Christmas if they wanted to see my children. It caused huge energy crashes and I felt so ill.

    I expect this virus will be much harder for me to shift..I thought it might do. Hopefully though I won't need a gp check up or antibiotics.

    Thank you for your kind words.

    Julie

  • My TSH was over 300, lol. That was 19 years ago. I was fobbed off with depression and after reading thyroid uk insisted on a test. I got probably the only opology I will ever get from a GP.

  • Wow!!! I feel bad and mines nowhere near that figure. You must have felt dreadful!!!

  • I was falling asleep in car parks (had to stop so I didn't fall asleep while driving)

    My teenage sonhas a goitre, we are watching him very carefully.

  • Oh I'm sorry. I suspect my son will develop hypothyroidism as his tsh is over 3.5 and he's 12 and he's over weight. It's awful seeing your child having issues so young.

    Xx

  • Your young son must be feeling the effects of TSH over 3.5.

    No doubt his GP will leave him. like he left you Julie.

    It's just not fair, I'm also sorry that he is carrying weight, they are so sensitive at that age re weight and your family diet is so good and healthy.

    But you have to get well first and you will soon when the higher dose takes effect.

    J x

  • Thank you.

    He does feel the cold and he can't lose weight. No tiredness though. I'm keeping a close eye on him. His ft4 was only about 9 (7-17)and tsh 3.6. Yes this particular gp said he was fine, it wasn't the one I see. I'm going to get myself fighting fit then take him to my gp and ask him to repeat his thyroid tests which I know he will.

    I'm a tad concerned after what Angel of thr north haside said about tsh being raised but must ft4 and ft3 aren't that bad and it could be more complex. It makes me a tad concerned. My gp always said my ft4 was low in range and still not under range as it was flogging itself to keep up with the demand of my high tsh.

    Thanks for your help.

    Julie x

  • My son was very unwell with a TSH of 2.7 which they refused to treat, once through puberty it has settled and he is ok. But it fluctuated a lot in that time. Just keep an eye on him and get regular checks and iron , fbc etc

  • He is going through puberty at the moment. I will keep a close eye on it.

    Thank you x

  • Also keep an eye on his schooling. Last year the school decided he had mild dyslexia because he had a 'slow prossesing speed' he gets extra time on his gcse exams this year as a result, even though His thought proccess are perfectly ok again now.

    He has been taking desicated liver tablets every day this year to provide him with natural b vitamins.

  • Yes a TSH at that level could indicate your low thyroid output is the cause of your chronic fatigue and that you need a higher dose of thyroxine. At 5 I was like a zombie. I still have fatigue problems even now my dosage is ok. Ask what your B12 result was also and in fact all your results and ranges. They often say all's fine when levels are at lower end of ranges and could still be causing symptoms.

  • Thank you.

    My tsh was 9 last summer and I felt dreadful and that's finally when I was given thyroxine. I'm now on 75mg as of today so in praying that'll help. When my tsh got doenough of 2.6 in November I felt so much better, my ft4 was almost 19.

    My ft4 has been around 14 to 15 in the range of 12-22. I've always worried that wasn't that bad and why my tsh was so high yet the ft4 not in my boots. The ft4 is now 17 and the tsh 5.7. I've increased to 75mg today which I'm hoping will get that tsh down and not over medicated me if my ft4 is 17. Hopefully not.

    My b12 was 212 18 months ago so I supplemented. It's own around 500. Ferritin has been low all my adult life really, as low as 8 but it's now 34. I know it needs to be much higher but I can't take iron pills as they make me feel dreadful so I use liquid iron which is slowly helping.

    Thanks

    Julie

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