In misery !

Hi this is my first post so please be gentle with me 😀

Following removal of my left side thyroid, I felt initially really well . Lost weight , felt full of energy for the first time in years ! Then collapsed at home with what has been diagnosed as othostatic postural hypotension, and gradually all the hypo symptoms pre thyroid removal have returned . Today I saw my gp and begged for a trial of thyroid medication as I feel so dreadful , the endo that I have seen and my gp just say all my tests come back within normal range ... So no meds needed , despite me saying I can hardly get out of bed and the joint pain I'm in makes hanging the washing out like climbing Mount Everest. Gp said today that it was psychological and that maybe I needed to find a new hobby as I'm retired now from a pretty demanding career , or take up some volunteering , I said if I had enough energy I would ! Just shocked and feel desperate today is this it from now on ! Sorry just feel I was treated like a child and a spoilt demanding one at that ... Don't know where to go from here

Thank you sorry for the self centred rant 😳

41 Replies

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  • Welcome to the forum, Papadean.

    Please post your thyroid results with the lab ranges (figures in brackets after results) to help members advise. If you don't have the results ask your GP receptionist or practice manager for a printout and post them in a new question.

    I wish I could say your awful consultation was unusual. Unfortunately, too many people are told their results are non-thyroidal because results are within a hideously broad range, patronised, and told their obviously physical symptoms are in their head. TSH >2 is an indication thyroid is struggling to produce hormone but NHS won't make a diagnosis until TSH is >5 in most cases, even though hypothyroid symptoms may precede abnormal bloods by months/years.

    Hypothyroid patients often become deficient in ferritin, vitamin D, B12 and folate which can cause fatigue, musculoskeletal pain and low mood similar to hypothyroid symptoms. Perhaps you could ask your unobliging GP, or another GP at the practice, whether blood tests can be done to rule out deficiency causing your joint pain since hypothyroidism has been ruled out for now.

    thyroiduk.org.uk/tuk/diagno...

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

  • Clutter!

    Please can you repost/repeat something I read somewhere but I cannot find it now? It was the average dose of Armour in grains. I thought you said it was between 3-4 grains in Britain. Was this correct? If I translate that to the equivalent dose of Levo I get 300 - 400 mcgs, which is very high. Maybe I am missing something, could you elaborate on this dose please?

    Lahs

  • LAH, I'm pretty sure it's Mary Shoman who says the average is 3-5 grains and that will be in the USA as NDT isn't widely used in the UK. It really doesn't matter what averages are, people need as little or as much as they need.

    Manufacturers state that 1 grain is bioactively equivalent to 100mcg T4,not that it is equivalent to 100mcg. The actual T4+T3 content in one grain is equivalent to 65mcg T4 if you use a 3:1 T3:T4 ratio, or 75mcg if you use 4:1 ratio.

  • Thank you very much Clutter, it makes sense now.

  • thyroiduk.org.uk/tuk/testin...

    I would have your tests done privately - as per the link above - and then report back here for some further good advice :-) I feel your Docs are not giving you the support you deserve and show little knowledge of your condition.

    Follow the advice of others here - and you will be well in no time :-)

  • I would ask around, maybe do a post on here, to find if someone can recommend a sympathetic GP in your area. And change. The right GP can make a very difficult experience easier to cope with. I stayed with unsuitable GP's in the past as I had had a few unhelpful ones and accepted it as the norm. There are some very helpful GP's out there who want to work with their patients. There could even be one at your current practice, I found a wide variety at the one where I used to live. I wish you luck and rapid progress with your health.

  • Medical people like that just make me angry. Can you get another medical team?

  • Sounds terrible! Being hypothyroid may predispone one to become diabetic. Have your doc checked that your blood glucose is normal? Low GI diet may help.

  • I'm guessing your doctor is a man?

    Change your doctor.

    I saw my make GP for 10 years with extreme leg and back pain.

    He said it was many things including psychological.

    Eventually I saw somebody else.

    I had 3 large 'masses'..,tumours.

    One had penetrated my spinal canal.

    I went through two major surgeries to save my life.

    I am now disabled.

    If your doctor isn't listening, is not sympathetic, or simply doesn't have the time....

    Please see somebody else.

    I'm 74 now....30 years of my life have been 'altered" by incompetence...don't let this happen to you.

    It's YOUR life.

    Best of luck.

    Mari.

  • I've had 3/4 of my thyroid removed 22 years ago , personally I just get on with it I work full time never sleep through the night , do get tired take 175 mg levothyroxine every day take a selenium tablet just started taking that . My problem is my weight can't seem to loose any that's what gets me down . Can cope with everything else

  • Just to let you know I sympathise with you entirely & have the same & other symptoms. I have recently started taking cow thyroid & adrenal extra tablets but no results yet but the specialist doctor did say changes will take time. I will let everyone know if there is any improvement. What I wouldn't give to gave a decent night's sleep!

  • Maybe the T4 is not converting to T3? ApparentlyT3 is needed to enable weight loss. Perhaps you should ask your GP for some T3? It is good that you are able to 'get on with it' but you deserve more than that and should strive to get all things sorted :-)

  • When I mentioned my weight to my doctor she suggested I see the nurse who talks to u about weight management not booked to see her yet . Not sure what I should be asking my doctor . I suppose I've just accepted it but I don't like this weight gain . I've cut back on crisps . Biscuits , cakes , chocolates but no weight loss

  • Well, until you are correctly medicated you will not be able to loose weight no matter what diet you go on. Ask you GP to try you on some T3. If you combine the T3 with a 'healthy eating' plan - but not a full on diet I think you will find the weight will shift much easier. Some hypo's find the Paleo diet is good, too. But definitely try the T3 as it is almost impossible to lose weight without that being in the optimal range. Try reading 'is my thyroid making me fat' it is a great book, and it has a metabolism test using a very low calorie diet to prove that if your metabolism is not working then you simply cannot lose weight. You may well find your GP is unhelpful as the majority of them are clueless when it comes to thyroid issues - if so change to another, until you find one to help :-)

  • If I were you, I would not see her. Because it's very doubtful she knows anything about nutrition, and is likely to recommend some very unhelpful things, like low/no fat, which is the worst thing you could do! Low calorie is also very, very bad - not just for hypos, for everyone. Your weight gain is nothing to do with what you eat. Cutting out the sugar is good for your general health but that's not going to make you lose weight in this situation.

    So, unless you think that she's likely to offer you a dose of T3, I wouldn't waste my time and my patience, if I were you. And that's what you need to be asking your doctor : please test my FT3 (and if he doesn't, get it done privately), then if it's low : please can I have some T3 added to my Levo. And if he refuses, buy it yourself.

    You should also ask him to test your vit D, vit B12, folate, iron and ferritin, because they are likely to be low. And nutritional deficiencies can also make it impossible to lose weight. Supplement where necessary. But Don't expect your doctor to be able to interpret your results and offer a solution, because he knows sweet FA about nutrition. :)

  • Thanks ill book to see the doc's again suggest more test see what happens . Thank u .

  • You're welcome. :)

  • Always great advice from the very knowledgeable Greygoose :-)

  • Why, thank you, Baggiebod. :)

  • First of all this response is common... Within normal range is always a response. Insist you get the actual numbers of your Results. Normal for you is not normal for me, so saying normal range is rubbish. Change GP!!!!! If you live near Bristol there's a thyroid support group.. Google other ones too and get support and information from them. You are not alone x

  • Hi Nikki-D..I live in Bristol..could you give me the details of the support group?

    Many thanks

  • You should definitely post your results here for very informed feedback.

    Then, if your doctor isn't helpful, seek another....or another...

    If that doesn't work, you can buy thyroxine via the internet. Ask on this site for recommendations which will be sent to you via PM.

    When I told a doctor about my hypo symptoms which included muscle pain she just replied 'well, take a pain killer!' and refused to give me a higher dose. I then gave myself a slightly higher dose as I had some previously prescribed tablets and the pain and fatigue disappeared. Many doctors rely heavily on the TSH which is very disputed in the forums.

    A recommended book on this site is 'Stop the Thyroid Madness'. This has much valuable information for patient awareness.

    I hope you find what you need.

  • Hello Papadean, so sorry you are suffering like this. I had these horrible symptoms for more than two years before my thyroid "showed" any signs of trouble in blood tests. I understand how difficult every daily activity can be.

    First, I would say, cut yourself some slack, trim any corners you can in your housework and other tasks. Make it easier for yourself. Preserve energy wherever you can. I did everything much slower and cut out anything not completely necessary (much of the ironing for example!)

    Then, try another GP, either at your practice (I found a variety of responses with the GP's at mine, and eventually one has been ok and prescribed levothyroxine) or at another. Keep advocating for your own health and wellbeing. One thing I have learned here and from the whole experience is that we need to persist in asking for what we know we need. I was not naturally like that and tended to back off at the first hurdle, but keep going! Your GP has been very unsympathetic and unkind; it is their job to be compassionate and considerate in their care for you, too many are unpleasant these days.

    Second what has been said about other deficiencies. I was very deficient in vitamin D and didn't know, after I took the supplement my joint pains were hugely improved and are negligible now.

    I was also anaemic and have had an iron infusion recently, perhaps you are low in iron too?

    Get as much sleep as you can and good luck!

    Keep us posted!

    .

  • Awh bless you i know exactly how you feel and have felt the same since total thyroid removal in 2008. I find eating carbohydrates makes me feel even worse and better when not eating any at all. However i recently visited Doctor Barry Durrant-Peatfield and had tests prior to going he identified my problem within 5 mins of the consultation and the costs were worth ever penny.

    Like you my Gp said you are in range the bloods are where they should be however i feel like im living half a life aches pains no energy just dreadful. I hope you find out what is wrong and get sorted. The best information to read up on is 'stop the thyroid madness'

    hope info helps you

  • Papadean, it seems such a typical reaction. I went through this for years, life was hell. I was told by one (male) GP that I was being neurotic and menopausal. He put me on HRT which made me worse. I was also diagnosed with fibromyalgia and that has been a mixed blessing because everything is blamed on it. my low TSH is being used as a "stick" to threaten me with, come off levothyroxine or you will get atrial fibrillation and osteoporisis, and am told that technically I am not hypothyroid - so why do I have the symptoms. Like you, I find the weight problem, and the mass of fat round my middle, the most depressing and hard to cope with aspect, especially as it has happened suddenly. i have gone up 8 lbs in weight in less than 3 weeks, and all of it round my middle, so now hardly any of my clothes fit, and as I can't afford new I am trawling charity shops for cheap, presentable stuff. Unfortunately a lot of the charity shop clothes here come from dead old people in nursing homes. Nothing even vaguely attractive.

    Good luck. I hope you get it sorted out. You will get good advice here. I have a new GP, who admits she knows nothing about FMS or thyroid, but thanks to the info I have gained from this forum, I feel more informed and can discuss things with her and the endo.

  • That is a shocking way to speak to a patient. Make a formal complaint in writing with a copy to the Practice Manager, actually send a copy to the CCG too.

    We all need to stand up to these bullies who blame the patient cos it's easier than them doing their well paid job properly.

    You've had plenty of good advice so good luck.

  • Hello Papadean I have just been diagnosed with othostatic postural hypotension too and it makes you feel awful. I have had one hell of a year and maybe just sort of and very slightly starting to climb out. Please look to heal your adrenals I am sure they are the culprit in this and the low blood pressure when standing. I even started to get anxiety and feelings of panic not realising if your adrenals are exhausted then you will be too. I don't buy into the doctors interpretation of panic attacks to me they are always a symptom of something going wrong with the endocrine system.

    I can recommend a good book (if we are allowed to on here, please remove this bit if not) Adrenal Fatigue by James L. Wilson between my adrenals and my thyroid I now have terrible low blood sugar problems (all connected) I thought I was getting diabetic they were so bad. I had tried NDT and it made me feel worse and I am sure it was because of my adrenals. I am looking forward to going back on NDT as soon as my adrenals have recovered. Papadean all this goes hand in hand, I wish you well on your road to recovery.

    Katherine xX

  • I feel for you being in such a depressingly familiar scenario. There are plenty of people here with wonderful advice including about self medicating if necessary. I hope you feel better asap x

  • Hopefully, papadean, you have realised that there are many of us on this site who have been dismissed by our GPs as being neurotic or depressed when we are really hypothyroid.

    Thirty years' ago, when I started to feel unwell, there was not an internet for me to browse and learn that I was being treated (or not) badly by my doctor. One of the problems is that we need to do battle at a time when we do not have the energy or brain-power to do so. Sadly the attitude of the average GP is still just as harmful and ignorant; the great thing is that we have this site which has very knowledgeable and sympathetic people on board. (I am at the moment trying to convince an acquaintance that she is being fobbed off by having just tsh tests done at her GP's. What an uphill struggle!) By coincidence I met a woman at our local wives' club who has just had one of her thyroid glands removed (not a pretty scar across her neck) and she was feeling awful but was told that she had to wait to see if her remaining thyroid would step into the breach. From an alternative therapists point of view it is difficult to get people to understand that their GP/endo. is not God and is not omniscient. One who is God, to my mind, is Dr. Peatfield and if you can get to see him it would restore your faith.

    Best wishes

  • Hi where you go from here is to find a doctor who knows what he is talking about. To say you need a hobby is insulting at the least. You have obviously gone hypothyroid and need to get balanced. My doctor is excellent but in Belgium, if you could get there I could give you the details. If not you could see Dr Peatfield, he is very good. Don't leave this, you are not well.

    These blood tests put millions of people in agony like yourself, you are not the only one. I was literally left to die when they took out my gland and I lay in bed crippled for 18 months. I could not convert T4 to T3. Your bloods might say all is fine but it certainly isn't.

  • Hi Papadean, I've been reading here for two years. Welcome to the world of obstinate, insensitive, and possibly corrupt medical system. Thyroid hormone has never killed anyone but we may not be able to say that regarding the lack of hormone. You can attempt to find a reasoning physician but it's probably simpler and quicker to fund yourself. As mentioned, you can have those tests taken privately and then hope they will accept the results orwhether they will even prescribe for any deficiencies you most certainly have because of your condition.

    You definitely need to learn about this hormone and there is a lot of excellent information available. Usually low stomach acid is one result of low thyroid which then causes deficiencies of all kinds especially minerals like magnesium with their subsequent symptoms. This has such a snowball effect.

    You also have the option of obtaining your own hormone which is not that expensive and you can determine which is most helpful since you will only be prescribed levothyroxine IF you succeed in gaining any support at all.

    As you are discovering, this is a multi-faceted illness. This short video will give you an idea.

  • My friend, in this we are left alone. But despite what we have I take now my pledge and say with all my heart:God is in control! Yes, I say it again: Jesus is in control even of this situation. I have no remedies to beat this beast, but do I need also the feeling of defeat? What ever happens I want to live a joyful life. Bring yourself up. Today I am going to a birthday party, though I'd rather not. I would like to be cured, but there is no remedy, so I have my first and last bullet :prayer and praises to my Lord and Saviour. It might sound stupid and pointless, but His is my only consolation. I am not going to join the army of the defeated ones, grumbling, and depressed over it. I just decided to be joyful no matter what. I am not a doctor to give you the best advise, even them are uneable to find an answer, I am reading books on the problem and applying life style changes, even if I do not want. All the best and keep strong

  • It's horrible when the medics refuse to listen or to take your symptoms seriously. I have a different thyroid problem from yours, but am similarly fed up with the approach that takes blood results more seriously than how the patient is feeling. So I'm currently following Susan Blum's book 'The Immune System Recovery Plan' (2013) which discusses treating the whole person (through diet etc.) rather than just the thyroid - i.e. the underlying cause rather than just the symptom. I'm sure there are other books out there which propose similarly holistic treatments, and that other thyroid sufferers on this website will to guide you to the one that's best for you. (I also find that apart from the potential physical benefits, changing one's diet makes one feel more in control/less at the mercy of the medics.....)

    The very best of luck!

  • I have little faith ith in the medicos after they wrecked my digestion with anti-inflammatories, leaving me on a very restricted diet. I will look for the Susan Blum book. Thanks for the tip.

  • I cannot believe they told you to take up a hobby What is wrong with these people ? Have you tried NDT?

  • Papadean, you have received excellent advice in these posts, I cannot add to any of it. However, I have to say that your post brought me to tears, gave me a feeling of desperation and then of anger.

    You are not alone in all of this, I just wish doctors would read all of these posts then use their expertise to fix this enormous problem. This is an absolutely fascinating area of medicine why are so few medics interested in it? Maybe it's just too difficult.

  • Doctors do not understand after years on same dose of thyroid tabs they were reduced got no energy but I am 70 so who cares, been on kelp from health shop it helps.

  • Hello Papadean I am really sorry to hear that you are so ill. I've read all the replies and don't think anyone has mentioned your adrenals, low blood pressure on standing I seem to recall is a major symptom of a compromised adrenal system, this in itself can cause many symptoms and many (particularly Dr P in Crawley) strongly recommend getting this under control as it impacts on the bodies ability to use T3. The administrators here know more about this than me and might explain this better but I'd think it worth getting your cortisol levels checked. I really hope your GP knows enough to support you in getting these tests done, or you may need to take control and do it privately if you can. Best of luck with it all.

  • Don't give up ask to see a different doctor I had the same problem and demanded to see another gp at my surgery and she has been amazing she got me back into the clinic at the hospital and they found that my symptoms had worsened so keep up the fight until they listen you know your own body !!! Xx

  • Ah, it leaves you feeling terrible when the GP's treat you this way. You could follow up on the 'psychological' and request referral to a PsychIATRIST (not psychologist). I used to work in a Psychiatric Unit and our Psychiatrists frequently found referred patients were struggling miserably with a very real illness. Our Psychiatrists (even student doctors) would diagnose correctly and get the patient to the right specialist.

    Might amuse you to know those incompetent referring GPs earned the name: 'Clunk-doctor .....'

  • Hi in misery

    know exactly how you feel. I have gone on like that for three years with feeling low energy, depressed etc etc etc. I had a lump removed from my left side thyroid as well with Radio active iodine. My test were all "normal" to them. Last time I went to hospital for another lump on my right side I told them that just because my result were "normal" to them they were not "normal" to me and that before having any thryoid problems my TSH might have been 1.2 and since treatment I am 3.5 so whilst it is in their "normal" range it is not allowing me to lead a proper quality of life. They took another blood test and my TSH has now gone up to 4.3 and so they are now giving me thyroxine. Meanwhile, because I was getting absolutely no help from medical professionals I saw a herbalist and have been put on their tincture prescription and have been given a list of vitamins to take. After two weeks I am feeling a lot better especially with the IBS.

    The moral of my story is if the docs will not budge, make your feelings known to them and be assertive - everyone knows their own bodies and it is an insult to a person's intelligence for a doctor to give you the stupid reasons for you not feeling well. Unbelievable.

    I am going to keep at the herbalist stuff for two months and if there is little or no improvement I will start on the thryoxine. I am really hoping it helps and I can go back to GP's and rub it in their face.

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