Please vote on whether it's worth paying to see an Endo

Hello everyone,

I'm at a brick wall trying to get diagnosed with normal tsh and low but normal t3 & 4. Normal <2 Tpo

My symptoms seem to go away for a day or so & then come back the same. This is week 6 of a difficult relapse and year 6 altogether.

I've just done the pinch test too & can't budge my upper arms...painful too.

I don't have much money but am desperate to get well & I have an appointment with Dr Lindsay George in a few weeks. It'll cost a couple of hundred quid I expect.

Do you think I'm likely to be taken seriously by the Endo?

I feel so helpless & down atm...I don't think I can take another shoulder shrug by the medical profession...

Please send me your thoughts.

Thanks xx

17 Replies

oldestnewest
  • In the same boat, some of these endo's are beyond disgusting. I cant get it as I was treated in overseas and they are so different, totally open minded and not Text book.

    I dont have an answer to your question but I do wish you luck, pls let me know if this endo is any good as I am looking for a private one myself

    Bri

  • Thanks...I'll let you know. Think I'll go & be positive.

  • HI I was treated OK when like this. You need a private Endo as not so ruled about hospital protocol. need not cost much. I just pay for consultations, cheapish, rest through NHS and GP, drugs too mostly.

    Jackie

  • Hi Jackie...thanks. I've been recommended to see this guy by my GP who says he's good.

    I think I'll keep the appointment...will let you all know xx

  • I hoe it goes well. In is in Leamington Spa if desperate.

    Jackie

  • Honestly? It's impossible to say, but we can certainly send positive thoughts your way. There's something not right, that's for sure. I'm wondering, given your results, whether there's a central hypothyroid problem (a problem with pituitary function) That definitely ought to considered by an endocrinologist.

    At some point in the last 30 years it became acceptable for medical professionals to take a group of symptoms and use those symptoms to define the diagnosis. So we now have non-diagnoses, like Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome. My son's 18 year old girlfriend was given a diagnosis of "eosinophilic esophagitis" the other day to explain away the fact she feels sick all the time, and finds it hard to swallow. Really useful diagnosis that - it says her esophagus is sore. But it doesn't say why!! She's painfully thin, bless her, and up until last week, when the results of the gastroscopy finally came back, all the doctors she saw doctors assumed she must have an eating disorder - she doesn't. It makes me so angry that she's been left to suffer for the best part of 2 years before anyone thought to refer her to a specialist. I just wish I had more confidence that now she has a "diagnosis" that it'll be followed up with some actual advice and treatment.

    I don't know this for sure, but it's becoming increasingly clear to me that what we eat is taking a toll on our collective health. I think many more people are sensitive to modern wheat than we know. Not just wheat, dairy too.

    Have you experimented at all with diet? I've recently had to cut out all wheat because it upsets my digestive system. But they reckon damage is being done to some even if they have no outward symptoms. Believe me, I fully understand reluctance to give up foodstuffs - life can seem miserable enough when you feel ill all the time, without giving up stuff that seems to make like worth living (pizza, bread, pasta :)) but I have to reluctantly concede I've felt so much better without them.

  • My head is still spinning at the (lack of) diagnosis...outrageous.

    At the moment my temperature is 35 and I'm wearing 3 layers plus a scarf & drinking hot decaf...

    Brrrrr....

    My next move is the food thing...I agree with everything you said. I just want to know what's wrong with me so I can try & fix it. I'm becoming obsessed with diagnosis snd I'm sure that keeps me focused on illness not wellness but I feel like every time I hear normal test results I should feel normal....

    I appreciate your response. Thanks so muvht. Will keep you posted xx

  • Sixyearsick, it really depends on who you see. If your endo has been recommended via TUK members then there is a good chance he'll be helpful. I wish you luck.

  • Thanks. I'll let you know....everyone's been so kind & generous with their opinions. Think I'll go with a positive mind xx

  • Unless you have already had a recommendation you could well lose your money. You can post his/her name on the forum and ask for a private message to be sent to you if anyone has consulted them. We don't put comments about doctors on the forum.

    I do hope you are successful as we are left to get on with our ill-health and they don't appear to care.

  • Aha! Good idea. Thanks x

  • I would definitely check out this person before parting with money. If your GP recommends him then you can bet your life he won't think outside the box. Sorry to be so cynical.

  • Yeah that's what I heard. I can't believe what a mess this whole system is. Makes a cynic outa the best of us xx

  • I agree, I went private and what a waste of money, had all the bloods, only thing that was good is they scanned and found the goiter. But because the test was done so late TSH number was "normal" but when it was taken at seven am boom, there were the numbers I needed, but still even tho I am diagnosed with thyroidisit I am having to go,thru all the tests and jabs and scans, private is NO better then NHSAND they both suck. I have had about ten vials of blood drawn this morning.......don't waste your money and if you do have bloods get the. Very early. My dr was going on about cortisol so he would not let me go first thing. So now imhabe to research cortisol.prob another way to say your are normal. Sorry in such a bad attitude, they just do,not care, that has been my experience. Hope you can bet some help luv. The girls here will help you as. Ugh as any doctor can. X x

  • Not sure of your blood results but I was dismissed by an Endo with TSH 3.4. FT4 11.3 and FT3 4. He said that my symptoms could not be due to thyroid. I am now seeing a private practitioner who is treating me with NDT. Good luck with your Endo.

  • I see a private Endo and have managed to get any blood tests and prescriptions from him changed to NHS ones via my GP so I'm only paying for the appointments. It's definitely been worth it for me. I should say the reason I started seeing him is that I have BUPA insurance through work....but half way through my treatment (for an overactive thyroid) they re-categorised it as a chronic condition and withdrew funding. He was really great though and agreed to halve his fees from £200 an appointment to £100. He's also been great about letting me just call or email my results to him and then we only book an appointment when he feels he needs to see me. I can also email through questions.

    So i think it's worth going along to see them and see if they can help you manage the costs at all by being a bit flexible

    Good luck x

  • I was dismissed by the NHS as having perfectly normal thyroid function and “no endocrine reason for my symptoms”, when my TSH was 4.2 (0.35-6), my FT4 as 10 (9-26) and my FT3 was 3.8 (2.8-7). Mine is a very long story, but with results like that; a slowly rising TSH and consistently low FT4 and FT3, I was very unwell indeed. Luckily the endocrinologist that discharged me at that point suggested that as a last resort, my GP might like to try me on T3 again. I was not keen to do this as my two years on T3 had been pretty much a disaster, but I was able to persuade my GP that he should give me a trial of levothyroxine, because (a) I’d never tried it properly (b) it is cheap and (c) I would know pretty quickly if it didn’t agree with me.

    I waved the research at him and asked for 100mcg, he negotiated me down to 75mcg. I titrated my dose up at six weekly intervals until I reached 125mcg. I tried 150, but that was clearly too much. I have made a complete recovery, in some cases from things that had troubled me for twenty plus years. It’s still not straightforward, because the GP insists on going by my TSH, which is suppressed now and makes him nervous, so he wants to give me 75mcg, I refuse to have less than 100mcg from him and I buy the other 25mcg. I know that I have been very, very lucky.

    Do your research and keep fighting is all I can say.

You may also like...