I recently posted about having to change my GP to a one at the same practice who is hypo. I went to see him today and as I suspected he had absolutely no clue. If I had to take an exam on thyroid problems I'd probably get a C, but he would be in the corner with the dunces cap on! I told him I'd been on Levo for nearly a year now and still have all my symptoms-and feel worse now than I did before. He tilted his head to one side, took a deep breath and decreed that he thinks I am blaming my thyroid for all of my symptoms. Duh???!!! I said , yes well that's because it is to blame!! I read out a list of my symptoms and guess what? It isn't my thyroid causing my inability to lose weight, dodgy hair, insomnia even though I'm shattered, constipation, zero libido, temperature intolerance, constant basal temp of around 34.6, brain fog/lack of concentration etc. No, no, no , no. It is...depression!! All those pesky symptoms are caused because I am depressed. Who knew?! It couldn't be anything else as my blood test (taken in February) is "normal". I could not believe my ears. I asked what would he have said if I had read out a list of symptoms but hadn't mentioned I was suffering from depression/low mood. In typical politician mode, he changed the subject. I asked where he stood on T3-again, he changed the subject. I asked if he understood that some people didn't covert T4 to T3 adequately...and guess what? Yep, he changed the subject!!! Clearly WAY out of his depth he suggested seeing a specialist (endo), therefore pushing the problem onto someone else.
I know that GPs are "general" practitioners and don't get a lot of training re thyroid problems ( other than I imagine, a 5 minute workshop on writing out thyroxine prescriptions) but why oh why, when patients come in with patently more knowledge than them, don't they brush up on the subject a bit? I am sorry to say I lost it a bit and told this guy point blank that he needs to learn to think outside the box, but he remained steadfast that I was "normal". My parting shot was that I would love to prove him wrong, and I intend to...somehow!!! I haven't quite worked that bit out yet
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infomaniac
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Well at least you've still got a sense of humour ..........
What a corker. You wouldn't mind if they would only acknowledge their own knowledge deficits, and concede that your knowledge is greater and borne out of a need to get well. Well, "all" you need to do now is decide which Endo to see .......
You have to laugh or you'd cry! He didn't actually give me a choice of endo-just said he'd sort it out. He's probably going through his little black book of incompetent colleagues to refer me to as we speak!
I'm booked to go to Sheffield next month after someone reported a positive experience they'd had there. So I gave the details to my GP and he wrote a letter of referral (to shut me up ????)
Lol - your ' little black book of the incompetent' really made me laugh. I do hope he isn't doing that though and you get one of the good ones who agrees that your doctor is a bit of a (complete?) plonker. Do a bit of research and get in quickly with your own choice.
I have looked before for someone decent but only came up with a private specialist (Plan B!!) but have emailed Louise for her list to see if there is anyone decent in my area. It will be just my luck that the GP makes up for his lack of Thyroid knowledge by having super-efficient organisational skills and has already written to one of his pals from his black book!
Not super efficient but inconsiderate of your views. Every time I've needed a referral of late, or surgery (3 in past two years), I've always been asked if I have a preference as to who/where I'm referred. Does it reflect an attitude of patients being under his management rather than under his care, do you think?
Quite possibly. He was probably just glad to see the back of me. I have said loads of times on here that I feel uncomfortable trying to tell GPs their job when I don't know all that much myself but yesterday the gloves came off! And the release of pent up anger did wonders for my low mood!
I take the view that if anyone is paid to do a job they should do it to the required standard whether they clean tables drive buses or perform neurosurgery, and if they don't then they should be told. Equally I will always praise and thank when it's due, and I recently wrote to thank a PALS advisor for sorting out my bloods problem so efficiently. And I complemented her too, on her concise well-written and grammatically correct letter and you could tell by what she wrote in reply, that it didn't happen often and she was really pleased. She said it had made her day. So I praise and complain as appropriate. But when it is our health it's so much more important.
Separated at birth! I am exactly the same. It doesn't happen that often, sadly, but I always offer praise when it is due too. I think it evens the Karma if I have bitched about bad service
This I don't get because if we say a medicine doesnt agree with us then we're crazy but if they say it doesnt then it's perfectly reasonable and they will prescribe another drug to see how we do on that one. I have daily headaches and migraines and have tried 3 different meds til I found one that agreed with me (and yep I think it is undiagnosed hypot that has caused it for the past TEN years). The Doc had no problem experimenting to see what worked so why is it different for thyroid issues?
I know-it's weird isn't it? They are happy to waste money on all sorts of other medications for us but have difficulty with the concept that if we were adequately treated it would save time and money in the long run.
Bexy you are SOOO right and it hadn't occurred to me: yesterday I rang the surgery to say I'd had a severe reaction to my post-op co-codamol. Within minutes a nurse rang me back to discuss it. Within an hour she had spoken to a GP and obtained an alternative painkiller, she ensured it was put in the correct pile for collection by the local Lloyds at lunchtime, then phoned me back to tell me. I would never get that response by phoning in my reaction to Levo .........
But the point of groundhog day was eventually you can get it right. These endos don't even know there's such a think as trying much less getting it right.
Maybe the guy had brain fog, his back hurt so much he would have been drooling from the pain if he didn't keep his lips shut and he could hardly wait to get out of the office, sit in a car with his screaming back pain and go home for 3 pints. Maybe he spoke the only words he can remember reliably. The 'other words' are unreachable in his memory banks.
Where is his evidence that you're depressed ? - there are ways of measuring depression, but in any case depression is a symptom of hypo. In a similar situation I just increased my dose until I felt well, I'm much more difficult to diagnose as depressed when I'm on a dose where I feel well they don't have time to argue with someone who's well enough to argue. Get well, show him you're well, your test results will probably still be in range and everyone will be happy It is a shame that you left your last prescription on the bus and now need another one! Hypo makes you so absent minded and forgetful. Good luck infomaniac.
Oh dear! This would indeed be hilarious were it not SO common. Oh course you are depressed - in the layman's sense of the word, because you are being belittled and not taken seriously! However, clinical depression is another thing altogether and whilst some of the symptoms may be mimicked by hypo symptoms, I have never heard of hair loss as high up on the depression symptom list!! Don't know how old you are infomaniac, but my guess is he's saving that one up to describe as 'menopausal' at a later time!!! Keep smiling!
I really wish you luck in proving him wrong. I have been on 150mg Levo for years with all your symptoms except constant basal temp of around 34.6 , but with added symptoms of osteoarthritis and terrible cramp in my feet at night but guess what, I got that reply about 10 years ago. I took his prescription for depression once, felt no different. I have to say I've never felt depressed as such just sometimes when things do get to me when I can't do things I want to do so, it was out the blue when he diagnosed depression. Maybe, because I reeled off more than one symptom he couldn't cope because I was told once, granted by a partner of my GP, not to see him with more than one complaint at a time (I only mentioned 2). He said I had to make another appointment for the other. I did make another appointment after numerous phone calls to get an appointment so it was nearly 2 weeks before I could get sorted out with the second complaint (nothing to do with thyroid). It look no more than 2 minutes for him to give me a prescription! I've still got all my thyroid symptoms. Before I leave the surgery when I do go, I look at my lovely thyroidplonker doctor and imagine him sitting there in only his socks and always leave laughing!
Thanks for the support everyone I actually do have bouts of depression/low mood and I attribute that directly to my thyroid as I have never suffered from anything like that before, but this guy had difficulty grasping the fact that the two things were related. I am having "talking therapy" and actually had an appointment yesterday afternoon. The first thing I asked was if I was a friend or relative who had these symptoms what would she think. She said she would suggest blood tests to see what was wrong. So you wouldn't think I was depressed then, said I...she looked puzzled and said no. Like you say Toptomato it would probably be the first recorded case of depression related hair loss and constipation!!!
Clutter, I know I'm a wimp but I really am worried about taking T3 unsupervised. Unless things get much worse I will just wait for the endonob's appointment and see what happens. You never know, he might just have a clue about the thyroid....is that a pig flying past the window???!!!
I would agree. I have suffered with depression all my life and SAD. 2 years on Armour and I get depressed for specific reasons (finding work the normal stuff etc) other than that I'm fine now. This year was the first year I didn't get SAD. I enjoyed the winter and then got a little annoyed when it went on too long! Totally different from before
Infomaniac, you are not a wimp. Self medicating isn't for everyone
Well your going to get down if you can't do all the things you want and can't think straight. I had a good day yesterday but today for no reason at all I have woken up feeling utterly exhausted and lethargic again. Its difficult when its like this to even work out if an increase has worked or not. I had my bloods done yesterday after a six week increase, I can't even decide if there has been an improvement or not. I don't think so, I think the improved days I have experienced are more to do with the sunshine than the thyroxine increase. The depression thing is definitely chicken and egg and only costs the NHS more if they start dishing out anti depressants as well as thyroxine. I wish there was more knowledge and more care given with this condition, I really do. Im proper fed up with it.
Me too HypoT. It really is disgraceful that GPs are allowed to "treat" us when they haven't a clue how to manage the condition. I refused point blank to take anti-depressants so have been having Talking Therapy. It has worked but only to a limited degree because I am obviously not medicated properly yet. I do find the sunshine helps a little but we rarely see it in this part of the country!
I have been given information for counselling as well, a piece of paper with telephone details on it and I could have either telephone or face to face counselling. I had to look online to find out where its at because I refuse to run up a phone bill with telephone counselling, and its right across town. The thing with that is if I wake up on one of my exhausted days and Im due for a counselling session I simply couldn't make it there, the effort would be too much for me so I haven't actually got there yet but I might check it out eventually. Glad its helping you, I think talking is good for us, indeed any kind of effective communication such as this group is good therapy. Family and friends just give up on us completely unable to understand what we are going through.
You are right HypoT. It's more the talking and getting things off my chest rather than the actual techniques that are helping. I hope you can manage to get yourself to a therapist. I know mine said at the beginning if I cancel more than one session they would terminate the whole lot so it's maybe worth mentioning that sometimes you may have to cancel as you can't physically make it.
Ah, you have to understand this is what the Dr are taught at school and what they are given as guidelines by the royal collage of Physicians. Its a bit like location location location when buying a house but in this case its TSH, Tsh, TSH, What is your TSH and what is your T3 you may need a private blood test.
But surely they must notice that more and more patients are coming in still unwell despite the bloods being in range and that this indicates the guidelines need to be looked at?
I am an engineer (telecoms and internet) I am not a DR. I had my thyroid removed in 199 I was only 44 at the time and I am a 1/4 of the person I use to be.
Lets look at this logically. Your thyroid makes T0, T1. T2. T3, T4 and caliciton( not sure of the spelling for the last one.
You are given a replacement that only has T4 and you aretold that the other Ts in the spectrum don't matter.
I was getting terrible mood swings, feeling cold , low body temperature, Cramp, weight gain.
extreme fatigue, all the good things from a Thyroid or lack of it. I took my self of the Joburg South Arica and saw a dr there who got me back to work. I was taking high doses of testosterone and Prenenalone and DHEA..( I am not sure if that was the right thing to do but it worked.)
You are constantly told that its depression then you take yourself off to a physiotherapists who say no its not and then the endo says well your TSH is ok, you must be fine go away and come back if it gets any worse. What is more i have paid for this information.
I went to a British Thyriod meeting a few years ago, the debate was getting heated and I asked the audience how many of them felt well on NHS thyroxin and not one person put their hand up. The Endo, who I believed had his heart in the right place, said look these the are the guidelines I have to work to, I have to work to and I have a mortgage to pay like everybody else.
This is my thoughts now and not the board, if for some reason, the whole treating area was put on its head and Natural Thyroid was given out on the NHS, its going to make a lot of Drs look Silly and lose face. Its going to cost the Government a lot of money in buying these drugs. and the drug companies are going to lose a lot of money as they cannot licence the meds as they are natural.
What is needed to happen, somebody with a lot of spare funds to sue the Drs and win. People like Linn M and Louise who are doing a great job in biting and recording all this for the big court case that will happen one day. The petition to the Scottish parliament help a lot and we need something like that to happen in England........
All this does doesnt help you, and I cannot seem to get it in the the patients who feel very unwell on here that Endos will not help you if your TSH is right. You have to see a private Dr to get better. Its very sad to say but in the difficult cases its true.
Good luck and don't give up.
John C
A quick tip that may help you. Take your temperature three hours after waking up then three hours again then three again. so say you get up at 7am, you take your temp 10am then at 1pm and then the last time at 4pm. It should be around 37 c or 98.6, it has to be done under the tongue and a non digital thermometer.
do that for a week ifs its low you have a problem with your metabolism which could mean your taking not enough Thyroxin, Now this is important, Take your thyroxin when you fist get up with a good glass of water, nothing else.Then wait for an hour at least or if you can hold on for 1.5 hours do so. Then have your breakfast have something like beans on a slice of toast, no milk, no yogurts. No supplements like calcium, soya, or ant acids.
If you have to take these supplements try taking them around 8 pm at night to make sure that your thyroxin is completely dissolved. This worked for me. Good luck John C
Assuming I could afford to go private and find a private doctor who specialised in Thyroid that didn't involve travelling too far, how does this work with regards to the GP NHS doctor who you are registered with? Are they then undermined by this and surely you would need to inform them of what you are doing in case there is an emergency. The two case notes would/might need to combine at some time in order to inform any medics in case of accident etc; It just seems to make the whole thing even more complicated and frustrating than it already is (and exhausting). It takes me all my time to make and attend and relate to one GP, never mind two. Guess I have got to put up with being a fat exhausted stressed out person for my remaining days........
HypoT, if you give consent, your private GP/specialist will write to your NHS GP reviewing the consultation and outlining a recommended treatment plan.
Hospital will usually contact your NHS GP which is why it is a good idea to tell your GP what medication you are taking. If you don't see the NHS GP you are registered with then give the hospital the contact details of your private GP.
hmm, I do apologise, there is a cost involved and I am on a pension now and it is difficult, I understand this. !!!
Saying that there are some reasonable Drs around that don't want to be millionaires by tomorrow evening.
If you see a private Dr, basically you give up with your GP for your thyroxin treatment. For all other problems you still see your GP. Mine has given up with me now and I tell him, what I want and he does it. I still get a new Dr in the pool who goes mad at me as my TSH is suppressed but I have my blood tests and I show them these and they usually quieten down a bit.
My Own GP goes mad at me and on one occasion started bang on the desk and threatend to stop giving me thyroxin, when he sees my TSH but then I take in my blood tests and show him that they are all within range and my BP and heart rate is ok and he is happy for another year. I also am asthmatic and I still see him about this but he still makes the odd remark about my TSH.
Please bear in mind if you see a private DR, you have the tests the consultation and the drugs to buy its all very hard I understand this.
I was paying at one stage 500£ per month for drugs and treatments and tests it was crazy at that time and that went on for 5 years...
I am now seeing a DR and I think if its going to work out fingers crossed at around 100 £ per three months? I hope anyway. and a blood test once a year for around 80 GBP.
Hi John, when I first started taking Levo I decided it would be best to take it in the early hours, approx 4am as I always seem to be awake around that time, plus it ensures my tummy is empty and no supplements etc affect absorption. I take my temperature regularly and it is usually around 34.6. I have never had it above 36 as long as my thyroid has been dodgy. No doubt my GP would say a low temperature is a sign of depression!
Hi, Hmm the low temperature is worrying that is too low, is this taken after three hours when you wake up, if so this is why you are feeling so bad. Its a bit like a cold blooded animal that has to sit in the sun to wake up , if that make sense. Do you wake up at 3-4 am short of breath, or your heart pounding and sweating, they you take your T4 nd go back to sleep?
As I mentioned there are a few things this may be.
Here they are listed.
Heart pounding in the early hours.
Insulin resistance.
Shortness of breath not enough thyroxin.
If your low temperature is low all day that could be Reverse T3 and or adrenal issues.
Have you been tested for hasimotos that needs to be ruled out.
I am an engineer so I am not a dr but this is what have learned over the last 15 years.
Good luck
John C, what part of the country are you???There is a reason I am asking are you anywhere near Brighton???
Hi John, to be honest I never see any difference if I take my Levo late, early or even miss it, I feel just the same and have never woken up with my heart pounding. It doesn't seem to matter when I take my temperature either-it's always low. I am at 35.7 at the moment and that is very good for me!
I have very high antibodies so although it hasn't been officially diagnosed I consider that I probably do have Hashis.
Lastly, no I am in the North East so nowhere near Brighton I'm afraid.
My T3 last time I had it tested was in range but on the low side. I would have to get it done privately if I wanted it done now as they won't test for T3 here which is ludicrous.
What is your TSH that is the only way your gong to get referred and or seen. I was in a clinic at a big london Teaching hospital may years ago when this all started up. The treating Prof made an off the cuff remark something along the lines of that as I had no thyroid I needed meds but 99% of his patient we blaming their thyroid and it wasn't that it was depression.
I sympathise with you but if you want an honest opinion you need to go privately to see somebody who can help you.
In Feb my TSH was 0.33 (0.4-4), T4 was 17.8 (9-25) and T3 3.7 (2.8-7.5) but I had taken my Levo at 4am that morning and I now know this isn't the done thing.
I can only but sigh at your post info! It really makes me angry. I was fobbed off with depression, then menopause before my thyroid was even tested. Then when I was put on Levo and the symptoms were still there, my job was blamed for my tiredness, my weight gain due to menopause and my swollen ankles due to standing a lot. NO NO NO stupid doctors, it is ALL down to my thyroid.
I went to see a natural health guy recently and it was an absolute relief listening to someone who understood the workings of the thyroid and what is needed to get to full health. He was so knowledgable. Ive yet to start anything with him, Ill report back another time but so far, the doctors and the endos have honestly made me feel like giving up with their lack of compassion and understanding whereas this natural health guy could have been going through what I was because of his understanding (he isn't by the way!).
Hope you manage to find a good endo info to help you xx
Your natural health guy sounds great-hope it works out with him. I think the difference between the NHS and private is if a person is working for themselves they HAVE to keep up to date with their knowledge or people just won't come back to them whereas the NHS can dole out any old rubbish treatment and we have no option but to take it.
I did a bit of googling and have found an NHS endo who sounds OK (quite a few positive reviews) so I have requested to see him. The GPs receptionist said they'd try but couldn't promise anything so I will probs end up with a run of the mill endonob!
Awww, I hope you manage to get sorted, fingers crossed for you that you get to see a specialist that actually does what it says on the tin "specialise" and make you better x
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