Hi , not been on here for a while . Need a few bits of advise. From people a lot more knowledgeable than me. I’ve struggled with my symptoms since being diagnosed with an under active thyroid 6yrs ago . I’m currently taking 75 mg, which according to my TSH test is correct, so I should be fine . Don’t think so .
I was diagnosed 2yrs ago with ME/Fibro , I’ve been tested for everything else you can think of , I’ve had ecg’: eeg’s , just had an MRI , I’ve seen an endo who was useless , Rheumotologist, Neurologist, just been referred to dermatology. The list goes on .
I feel myself getting worse , which I didn’t think was possible.
I had to give up work 3 yrs ago , I don’t get sick pay as I was self-employed. So money’s tight .
I’ve decided to look at seeing someone private and somehow raise the money . Been looking through the list from Thyroid Uk , any recommendations would be appreciated if you could private message me.
I wondered how the fees worked , I know you pay for your initial visit and follow up appointments. What else is involved, do you pay for blood tests etc . It would be good to have an idea how much is involved, then I know how much to beg , borrow or steal.
Much appreciated.
Bye for now.
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scoobydoo87
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75mcg Levo is quite a low dose. What is your actual TSH result? Is it 1 or below which is where most of us feel best? Have you had FT4 and FT3 tested? TSH alone doesn't give the whole picture. I imagine that you are actually undermedicated.
Before paying to see someone privately, you would be better getting the following tested, privately if necessary
TSH
FT4
FT3
TPO antibodies
TG antibodies
Vit D
B12
Folate
Ferritin
Cheaper to do through Medichecks or Blue Horizon than doing them through a private doctor. Members of the forum can interpret them and give suggestions where necessary.
Fingerprick tests but can be ordered as venous blood draw tests if you can get the blood drawn
Medichecks Thyroid Check Ultravit medichecks.com/thyroid-func... (check on Thursdays when it is often discounted to £79)
The locum is right unfortunately even when its asked for by GP they often ignore the request at the lab. It is worth checking if the nurse would be amenable to filling an extra vial when having nhs tests, mine are all happy to fill an extra private vial for FT3 test for free when they already have a needle in my arm and it only takes 10 extra seconds. In addition to the test Seaside Susie has linked, Medichecks thyroid check plus is usually £59 but often discounted to £49 on Thursdays. It includes FT3 and the antibody tests if you already have recent nutrient results. Their docs are no better than most GPs at interpreting thyroid results, so if you go down this route, dont bother with the report, just post on here for advice!
They do 20% off the standard price for your first order if you are refered by an existing customer. This could be handy if the test you want isn't on offer on the date you want. if you dont already know someone who uses them and want to do this at any point, drop me a pm and I can pass my details (just to be open, I would get a thankyou discount on my next order too)
1) Is the pinprick test not as effective, or is the veinous sample just for those who don't feel comfortable doing the pinprick themselves?
2) Also I checked the Medichecks website and I don't see anywhere where it mentions a discount on Thursdays. (Do you just need to check the website on a thursday?)
1) Is the pinprick test not as effective, or is the veinous sample just for those who don't feel comfortable doing the pinprick themselves?
I have done a fingerprick check a couple of days after a GP venous blood draw, under the same conditions (same time for test, overnight fast, drinking water only, leaving off Levo for 24 hours) and the results were virtually identical. So doing a fingerprick correctly will give accurate results. The venous blood draw option is for those who don't like doing fingerprick tests or have trouble doing them. For any blood test Medichecks advise leaving off Biotin (B7) or a B complex containing Biotin for 7 days, this is because they use biotin in the testing procedure and this can give false results.
2) Also I checked the Medichecks website and I don't see anywhere where it mentions a discount on Thursdays. (Do you just need to check the website on a thursday?)
Medichecks have a thyroid related test on offer every Thursday (sometimes more than one), they are announced on the forum on Thursday mornig and they are also shown on Medichecks website under "Special Offers". The special price finishes at midnight on Thursdays. If there is a test you want that is not on special offer, then you can use code THYROIDUK for a 10% discount.
I paid to see a private Endocrinologist, waste of time, first consultation £200, then follow ups £175.00, had about four visits in total I’m based in Lincolnshire, so costs may vary.
Paid for my blood tests on top of his fee, again they vary from each hospital. He never gave me a full thyroid, just concentrated on vitamins levels all the time, so paid private for full thyroid via medi checks.
Had a scan as well with BMI, cost me £317.00.
I learnt more from this forum and others, than him, could of saved all that money and time, going back and forth, with no improvement in my condition.
His name was on the list provided on here, granted it’s not a recommendation.
However, since he diagnosed me with Hashimoto’s (bloods and scan confirmed this) said he couldn’t prescribe anything, and said he couldn’t help any longer, I felt ripped off.
Nail In the coffin was tried to give me antidepressants and told me to go on holiday!.
This upset me at first, then the more I thought about it, the more it angered me.
I got in touch with thyroid UK and explained this, providing them my username, so they could see all my posts and offered to email all my letters as proof.
They have removed him from the list as they have zero tolerance on this.
With Hashimoto’s I should be medicated, went to my GP and as my Endocrinologist wouldn’t prescribe me anything she refused. (His letters on my records), so it’s backfired.
She was clueless and when I pointed out I had a TSH of 6 previously, she said that was in range despite the lab results stating out of range.
GP then said it was anxiety and I had been misinformed about Hashimoto’s. As much use as a chocolate fire guard.
Needless to say I have loss all faith in the NHS and Endocrinologist.
Granted they are not all like this, but, I’m just talking from my own personal experience, and judging from the number of posts on here, it appears it’s a common occurrence.
Like I said above, not everyone will have experienced this.
I had 25 years of being asked if I would like anti-depressants, had to bite my tongue and resist responding with "Would you like a broken nose?". After decades of misery on Levo I finally got NTD 6 years ago and got my life back, now been told by my GP they want to throw me off it due to cost. Been told to make an appointment to see an endo consultant, not inclined to waste any more time. The last consultant I was sent to nearly cost me my driving license: told me I had Menieres disease when I had a badly infected sinus (for 3+ yrs!) that had to be drained under a general. Got my own supply NDT so inclined to ignore the GP and their associates - totally lost my faith in them. Have not met a single one who knew anything about thyroid probs, wasted more than2/3rds of my life, don't want to waste another minute.
All my docs have been useless wastes of air also just trying to tell me I was depressed and leaving me chronically deficient and ill etc - wasted nearly 20 years of my life! The only reason I like and stay with the one I have now is that he doesn't know much but openly admits this and even says I'm in a better position to decide what to do with the results so gives me whatever tests/meds I request - still should know more mind you lol!!!!!
I'm not normally a bitter type of person but doctors - I do find myself sometimes secretly wishing for one of them to get chronically ill and be told they're depressed lol!!!
I know, and I don't seem to judge myself for it lmao!
On the other, I did once accept ADs after giving birth as not in the best position to decline and stopped taking after three months. The doc called me in and asked why I'd stopped and I said I didn't need them. He very kindly said look I've been on them for 15 years and there's nothing wrong with it, you have thyroid issues so you're always going to be a little bit depressed so you can just stay on them forever!
I raised my eyebrows, said ummmmm.... no thanks and haven't been back to see him. How can a doc say those things - it is beyond me lol!!! I suppose at least he's a nice doc rather than a god type one and he does seem to care but even so!
TO be honest, as already mentioned, you're prob better off sorting yourself out with help on here as the majority of docs aren't very helpful and sometimes negligent.
Just get the blood tests suggested above - I pay the local hospital £10 direct to get my blood drawn as don't fancy trying to get my own blood out rather than the £25 you pay extra to medichecks etc.
If you have a lot of inflammation, stomach and skin issues, a gluten free diet may help you massively
You can pay £25 extra to get blood drawn at nearest to you private clinic. Or contact a private hospital or clinic near you and ask how much for them to do blood draw direct, might be cheaper. Even your local GP surgery may agree to do it, especially if they are run by Virgin or equivalent private practice
The first step is to get full bloods done and come back here for advice once you get results
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
You need to do private bloods first, even if you do decide to see an endo. Otherwise first consultation is waste of time.
If you have Hashimoto's then strictly gluten free diet likely essential.
I actually called medichecks and asked them where the nearest hospital/place I could get blood drawn through them was - figuring if they accept doing medicheck blood tests then they're likely to just let me pay direct and then called the hospital to check and arrange
If you have ME/fibro, it would be worth being tested for Lyme, mold, Epstein Barr, cytomegalovirus, HHV6, and other herpes family viruses, as well as having your immune system tested - immunoglobulins with subclasses, T and B cell compliments, and for autoimmunity.
Though the NHS is still in the dark ages, many patients are improving by finding and treating these issues, while supporting adrenal and thyroid function.
I’ve been tested for a few of those , not had my immune system tested though . I saw a useless Endo who I thought would have tested for more , but did usual tests that my gp had done. It all gets really demoralising.
Although it sounds bonkers, you can't really rely on the blood tests for any of those infections. That's whats difficult about the controversial world of Lyme.
I would however agree about getting thyroid levels right first. However if still having problems, AND if everything started after an initial period of illness, or with Lyme a known tick bite, then this must be considered also.
I'm in exactly the same boat myself. Have no idea what's wrong.
NealF the majority of NHS doctors don't believe that Lyme disease exists. A GP Partner (who's a total idiot) has ordered GPs NOT to refer me to hospital consultants, I believe this is due to my stating that I'm under the care of an American Lyme doctor.
They will not trust tests carried out overseas despite them knowing diddly squat about this disease.
I'm not disagreeing with anything you or anyone says, I know how hard Lyme sufferers have it. I'm just saying to the OP that they must get their hypo and any other levels sorted before even opening the Lyme box.
What LD doctor in America are you seeing - have you had any success?
Yeah sorry NealF for getting on my soap box! I'm really cross that despite worsening health and despite being under an NHS Endo not one NHS doctor possessed any morsel of intellectual curiosity as to why this was. Have ended up with zero confidence in any NHS doctor.
I think the difficulty is knowing when to stop banging the thyroid drum and now truly believe that we must listen to our instincts when something isn't right. On this forum there's too much unnecessary emphasis on constant blood testing, in my opinion obviously, and the results of which can be misleading as well as misinterpreted.
I had a similar situation. I was misdiganosed with fibromyalgia and general pain. After many dead ends I went to see Dr M <redacted doctor name> in Nottingham (I'm in Cambridge). I would highly recommend him. I didn't have much money to waste on Drs, but he is worth every penny. He knew exactly what was wrong hypPARAthryoidim for me, but he's a good overall endo. He's £250 initial and £175 after that. Message me if you would like more details.
[ Edited by admin:
26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only. ]
I too saw this endo & I agree. He was great. He acknowledged my diagnosis of Hashimotos, which was a relief in itself, sorted out my meds & put me on Vit D regime. He was impressed by me going gluten-free too.
I think it maybe could be the same Endocrinologist?
as per forum rules we can’t publish him full name but, Dr M, practices from, Lincoln, and Nottingham BMI hospitals.
At first he was brilliant, as my vitamin levels were poor and diagnosed me with Hashimoto’s too. I paid for a scan and had full thyroid test privately as he didn’t do a full thyroid.
I also went gluten free, but,not from his advice, off this forum.
Unfortunately, he then said nothing further he could do and offered no medication, despite me having Hashimoto’s.
I'm hoping you are still connected here - I've just come out of hospital with symptoms of thyroid problems. Just wondering about going to see an endocrinologist as NHS appointment is 2 months away. Would you be able to message details of the one you saw please.
Where do you live . I see an endo privately having been really poorly a year ago.
He doesn’t see me often so costs kept down and I get all bloods he requests privately but they are not too bad. My initial appointment lasted 1.5 hours !!! To have someone actually listen was so refreshing.
If you would like his name message me but of course depends where you live .
You can’t put a price on your health - For me last year meant holidaying in the uk, short breaks . I’m now feeling human again which I thought would never happen .
Hi. Like you I am self employed and not working just now so decisions about paying for private endos needs a lot of thought as money is tight. I mainly used the forum here to get info and then did tests throug medichecks. I was in the position where I had hashimotos and a TSH outwith the ranges but not above 10 so my GP would not medicate.
I went to a private Endo £200 who used my medicheck and GP blood test results and he wrote to my doctor to prescribe medication.
That was 5 months ago and my blood figures are now optimal and I have lost 16lbs since starting the AIP diet. The medication enabled me to get a bit more energy and mental clarity to be able to follow the diet.
Basically I would only go private if you have a specific concern. If you are looking for them to look at overall health then it could be very costly
Really, most of the private endos are NHS ones doing work on the side and they are not any more helpful if you pay them.
I saw a private GP in London from the Thyroid UK list. He’s retired now. He did do the full spectrum of tests, which helped a lot but it cost a fortune. Also he was just as TSH fixated as NHS GPs.
If you feel you want to see an endo rather than manage the condition yourself, it would probably be better to pick one from the Thyroid UK NHS endo list and ask your GP to refer you to the one you choose. You can be referred anywhere, you don’t have to see the local one.
I have had 2 nhs endos and both were useless, i thought about going private as i thought i would get a better service and quality of care-not the case i looked into it and the majoritybof people i have spoke to said save your cash!! I am now in the process of changing hospitals, i have to travel alot further but it maybe worth it, sadly i had the list of endos who maybe recommended but they were too far away for me. But i would save your pennies as some will take your money and then say bye bye.xx good luck
Hi I was diagnosed with thyroid 9 years ago and have taken thyroxine, dose going as high as 200 micro grams- but that didn’t work and I didn’t maintain the level, Doctor rubbish told me I needed to watch what I ate and offered me more anti-depressants
Had enough went to see private endocrinologist cost £200 - diagnosed with hasimotos and now on t3 - cost £5-£8 a tablet but benefit outways cost - doctor does blood tests and return to endo every 6 months
I have be diagnosed for Myoedema that is Hypothyroidism and I want to A&E and them do blood test and the doctor said I have hypothyroidism. This morning I have speak with GP and he prescribed my Levothyroxine 50 microgram. But I need help I have to do alot of blood test to know about T3 T4 please help me
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