I fought to be referred to a specialist as was so fed up with aching bones, weakness, tiredness, blurred vision, weight gain and anxiety, symptoms most of us have experienced at some point, I'm sure.
I had to have private blood tests at a place sourced by ME, paid for by ME, to show my doctor something was wrong - severe iron deficiency and vit D deficiency. She put me on vit D tablets and iron tablets, result I thought. Oh no, still felt rubbish. It'll take time says doctor. I've been suffering for 2.5 years because of your stupid diagnosis of menopause and depression, both of which were wrong. How much more time do I have to allow for my struggles?? How much more time does my husband and family have to put up with me being this stressed, tearful, irritable, moaning old bag?? If my husband left me I wouldn't blame him. What damage am I causing my teen daughter who needs an alert, on the ball, calming, understanding mum? These are the most difficult years in her life, she needs me, the old me
I was lucky enough to get to see a specialist who said my iron tablets were the wrong ones and my vit D tablets were no way near strong enough, plus she wanted to raise my levothyroxine. Blood tests taken for various things, celiac and arthritis amongst the usual tests. Great I thought. Definite result this time. Wrong. She said she would inform my doctor of her findings.
1 week passed.....2 weeks passed....not heard anything. Chased the specialist, no reply, no return of call. Chased doctor - nope, she hasn't heard anything. Christmas arrives, I'm too knackered to enjoy. Bet the doctor had a fab break.
Another week passes, hear nothing. Chase specialist, secretary says letter has been sent to doctor. Chase doctor, secretary says letter received, need to speak to doctor, she will ring on Monday (6days later)
Doctor telephones asking how she can help??
Excuse me??
Told her she had a letter from my specialist.
Yes, she says.
Well??? I say.
What did the specialist say to you, asks the doctor.
What????
For gods sake, please can you help me. I saw a specialist over a month ago, I had blood taken, I was told all the tablets I was on were wrong, I still feel crap, I've heard nothing from nobody and I'm fed up.
The specialist should have contacted you direct, says doctor.
Well she didn't.
Well you are paying the specialist not me, it's a waste of time paying her if she isn't doing her job. I can administer drugs as she suggests but you need to speak to her about anything else.
What????
I have never had the mispleasure to see a specialist, I have no idea how things work, I do not know whether specialist and doc work together to help me (this is what I suspected), or if I deal with my doctor and she does as specialist suggests, or if I don't speak to doc at all and deal only with specialist arrrghhhhhhh.
I tell doc all this - she tells me very huffily specialist says I need stronger iron tablets and vit d tablets and she will leave prescription at reception.
THNK YOU, Hallelujah, praise The Lord.
My blood pressure is now sky high, I have an anxious ball in my chest, I want to scream and maybe even slam my fist down on the table (but I won't), so thank you doctor. If you wanted to be a doctor, what was your reason? Was it because you care?? Because it certainly doesn't seem it.
The truth is, your put out because specialist says you have put me on the wrong tablets. Well, if you've got a problem with the specialist overriding what you have done, deal with it and don't take it out one me.
So sorry for the long rant but I just cannot get my head around all of this. I'm tired of trying to fight for my health, I just cannot keep doing this. I'm so scared of the future. Yes, I may be medicated correctly in the next 6 months but what if I get really sick again in the future? No one seems to care in the medical profession, if they cared and understood they wouldn't put you through this.
The medical profession sucks. I'm fed up of foreign people telling me that at least we have the NHS, yes we do but it's not working properly
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Tweetypie28
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Rant on! You deserve to. You've been treated appallingly. Some GP's need to remember that they are working for us..... we pay them!! My family has been given the very same runaround that you've had and I understand totally your frustration and desperation. It can become unbearable.
I wish I had some instant answers but sadly I don't. Could you start by showing the post you have written above to your family. I know you feel that you want to be more to them than your health allows, but maybe they understand more than you realise - maybe not, but either way they need to know how you feel. You did not ask to be this ill, and people around you need to know that.
As for the medical care you are receiving it's just not good enough. We found that the only way to get anywhere was to take charge of my daughter's health ourselves and finally we are getting somewhere with the help of a wonderful private doctor. After over 20 years we see some light on the horizon.
Do you have Lou's list of private doctors? It really is worth trying to see one of them get some proper tests done and talk to someone who will listen to you and believe you. Take your husband with you when you go.
I really do understand how you feel. On occasions when my daughter has been really low I've gone out into the field next to our house and just screamed with frustration (the field is ours and we live in the country so there's nobody to alarm).
Keep going, keep searching and you will find some answers, but maybe it's time to stop seeing that GP. She sounds as though she's in the job for herself not her patients, and your energy is too precious to waste time on her.
Hi, could you tell me how to get a copy of "Lou's list of private doctors" as I am searching for help after the very sad loss of Dr Skinner . Thanks for any help.
Hi Jane, have you had a blood test for thyroid antibodies, it may be that you have Hashimotos and need T3 Liothyronine instead of T4 Levothyroxine. The symptoms you feel, suggest high T4 levels although they may be within normal levels. It is still possible to suffer joint pains, weakness, anxiety etc within normal levels.
Lol Jenic!! I have had an antibodies test and apparently its normal. The specialist has suggested that I try different iron tablets, vit D tablets and higher does of levo then if no change she is suggesting adding some T3. Im sure she is a really good specialist, its just the admin side of it has taken so long
Thanks for replying, my husband is brilliant really, he does come with me to the docs, its just my view that I think Im just a pain in the bum, not his!! I tell him he would be better off without me and of course he reassures me that he wouldnt and that he loves me. He told me last night to authorise him to speak to the doctors and he will take charge as he can see how stress I am getting and he feels helpless. I just feel angry that the medical profession do not seem to understand this illness and if they do, they do not understand how to deal with us.
We too own a field and live in the country and I agree, the times I have wandered up that field and wanted to scream my head off!! In fact, I actually screamed whilst I was on my own and driving my car the other day, so hard I gave myself a sore throat, lol!!
Thanks for your understanding, sometimes its all that is needed, just someone who understands where I am coming from. Hope you and your family are well x
I'm so glad that your husband is understanding and will take charge - let him do it. It may well make any doctor you see take you more seriously.
I've noticed that of the doctors my daughter has seen over the years the ones who really care watch her very carefully to see her reactions, and the reaction times of her answers, so answer for yourself, but let your husband fill in any background as well.
OMG!!! Unbelievable. WHY WHY WHY? Why does the medical profession choose to treat us in this way?? Before this illness, I could count on one hand how many times I had seen a doctor in my life time - Im 44 so why are they not helping me properly now? Its beyond belief, it really is
'They' used the 'modernised' method of treatment - diagnose only by the TSH. Hounded Dr Skinner to death and frightened others no doubt with retribution if they didn't toe the line.
Before the thyroid gland blood tests when levothyroxine was also introduced as the perfect replacement for NDT, patients were diagnosed by their clinical symptoms (as Dr S did and some other doctors trained around the same time) and prescribed Natural Dessicated Thyroid hormone. There was no fibromyalgia, CFS, or ME! These were eventually named after about 10 years of complaining but they were not diagnosed with a thyroid gland problem due to their blood tests.
Ha ha ha Clutter!! That made me laugh. Exactly my thinking. Why could she just had done what the specialist told her when she got the letter. Why did I have to chase and when I did why did she have to be so difficult? Bah!
I hate to mention it but what happened to the promised increase in Levo? Did it happen? Hope so. Keep on fighting!
I am in the same position as you, waiting for a reply from my private consultant, to whom I sent a letter before Christmas. Now going to my GP today to ask what to do about low iron on the blood results, taken by consultant, who wrote to me before Christmas but did not mention a whole line of " lows" from the laboratory. I have already been on an iron supplement for months. I am assuming my GP will have had a letter from the consultant but as you say, maybe not...they seem incapable of joining up the dots. x
Hi Hennerton,good luck at the docs. Let me know how you get on. I do hope there is a letter there for you to discuss and that you are helped. My levo has supposedly been increased, off to collect prescription today.....
Until your meds and supplements are right, try to take some time just for you. Agree with other post about letting family know, all of them, how stressed you feel and how you appreciate their support and you are trying to get the help you need. Once a week carve out some time for yourself, once a month treat yourself to a holistic treatment - for me massage and acupuncture works, so does walking (jogging gently if I am up to it) in the countryside or by the sea, reading helps - I've just finished Longbourne, which was brillliant, so does watching comedy, Father Ted no matter how many times I go to repeats creases me up.... a friend who makes you laugh is even better....... my dogs are a non-judgemental godsend too...x
Hi Tilly, you are so right. Im going to do what you suggest. Im going to take charge of myself, make time for me. My family do know how I feel but a teenage daughter thinks only of themselves which is normal I guess! My husband is brilliant and Im probably the problem. I refuse to let this illness change my life but I fear the bottom line is at the moment, I am different, I cannot do what I once did and I have to give myself a break. Thank you for responding xx
My daughter was vile when she was a teenager. I honestly wanted her on another continent. Untidy, utterly self-centred, rude, looked at me like I was a piece of something unmentionable. It was incredibly stressful, at times more than when my son was in Afghanistan as a medic...... She is lovely now - left home! But still when she visits it is like being invaded with towels strewn all over the place, my make up nicked and even, can't believe she would do this, my flaming underwear!!!!!!!!!!!! Even more reason for you to take time out. Preferably with your husband at times somewhere very quiet where you are fed and offered drinks and don;t require to lift a finger x
My heart goes out to you and I can totally understand, and hear, your desperation but please don't stop fighting. Yes its an almighty effort and yes you are just too ill to cope with it but if you don't keep fighting your daughter will never get her old mum back.
Maybe your specialist needs a good kick up the mum herself and when you feel a bit better, which wont be long now that you have the correct meds I'm sure, you could write to her stating how you feel she has treated you.
NHS GP's really don't like us going private and they seem to hold it against us but what they are failing to see is that if they did their jobs properly we wouldn't need to be looking at private treatment. Maybe they can see that and take it as an insult and make it plain that they are pissed off by being as difficult as your GP has been.
I hope, now that you have got the correct meds, that you start to see a real improvement and are soon feeling a little more like your old self.
Wishing you well and please post again to let us all know how you are getting on wont you because when we read posts like this we do worry.
Im ok, sorry my post was a bit desperate last night - Im just so tired of having to fight fight fight all the time. I know Im not the only one and as I have said before, this forum is my life saver. I just feel a bit guilty that I dont offer as much advice as others. Im afraid with a full time business to run, teenage daughter and two dogs, my life is very full.
The attitude of the doctor shocked me yesterday, it wasnt expected. I thought specialists and doctors worked together, it appears not. Correct meds are waiting for me at the chemist, fingers crossed this time next month Im fighting fit!
Don't apologise for anything - we all get very desperate at time and have to let of steam somewhere and this site is an excellent place to do it as you know support is always at hand.
You'll have to update us as to what strength VitD and iron you have been given.
Hi Debsy, have you had a blood test for thyroid antibodies, it may be that you have Hashimotos and need T3 Liothyronine instead of T4 Levothyroxine. The symptoms you feel, suggest high T4 levels although they may be within normal levels. It is still possible to suffer joint pains, weakness, anxiety etc within normal levels.
Thank you Bluebell, extremely good advice. I have asked for a copy of this letter which I now have but no blood tests included. I have a feeling they have lost them as I have repeatedly asked for them. Im going to be tough now.......
I am also going to print out your reply and read it every time I need to see doc/specialist so I get in the correct head space.
I'm so sorry you had been having such an awful time with your doctor. I had the same problem feeling severely tired, headaches, blurred vision, dry skin, joint pains, cramps, hair loss, lost eyebrows, and so on and the doctor kept palming me off and eventually got to see a specialist who said I had arthritis in spine, knees, hands, neck and had knee ops and a spinal fusion but still felt really horrible and was told it was fybromyalgia which had 20 years ago still feeling terrible 2 years ago was told had under active thyroid, and most recently bit D3 deficiency. Still feeling bad and had enough. Waiting to see a specialist again about back, knees and neck and Adlai the thyroid again. Still feel terrible and was very Tearful at doctors. Now getting chest pain and breathlessness on top of everything. Go to your doctors and demand to see the specialist you want to see. Good luck hopefully things will get better for is both very soon.
Oh dear Wayne, what a journey you have had too. So, did you actually have arthritis or was it your thyroid all this time? If you had of told me your symptoms I would have said it was your thyroid and get your vitamin levels and iron levels checked and I didnt go to medical school to come to this conclusion so why do doctors not do this??? Hope your feeling ok today, its horrid when you get tearful in the doctors room but at least they may be able to see how desperate you are xx
Yes I have bad arthritis and had my spine operated on and 3 operations to my knee and told knee would need replacing but wouldn't do it yet as to young. I'm 47 in April and would have to wait at least to imbibe late 50's. But I think the thyroid has added to the pain in my joints as well. Had my bloods done last month again and said had Vit D3 deficiency and put on 20000 Ui tablets. I have tried for T3 but doctor will not give me it. I'm waiting to see Endo now so see what they say. I am having to have my spine re operated on also just when. It's is such a battle to get anything and annoys me as mos doctors just say it's this and that and palm you off. Hands now swelling up And a few fingers have started twisting. I take Morphine tablets, pregabalin, amitriptiline, Levo 175mg. D3 20000 Ui and normal pain klliers in between. Just wish all the pain and headaches would go away but think its will have to live with it all now. I have 18 month old grandsons who I can't play with which really upsets me. Good luck with the future.
Keep on fighting,after 6 mths I found a holistic Gp prepared to look outside square found my adrenals crashed,thyroxin making Bp high & anxiety, liver inflamed,B12 deficiency.,already knew D & magnesium low.I have seen 4 specialist,5 trips to ed all waste of time,Thyroid antibodies up but thyroid levels haven't changed.Your dam right you have to do your own research to better your health.
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