After 6 months (I know it's relatively short) I have lost faith in the NHS consultants so have decided to go private. So my first appointment is this Friday (yep only 3 days away) and I am really excited that I will finally get all of the tests I need and they will actually monitor me properly.
I have decided to see Mr Taleb Jeddy at Spire Hartswood Hospital in Brentwood. I know 2 people who have had seen him and they say that he really explains the condition and will actually help me get these levels sorted out.
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leighma81
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Good news Leigh, I think it is a good idea, you were sounding like you had just had enough of it all. I can just imagine how excited you are feeling. Good luck and us all know how it goes on Friday.
Thanks Liz, I am getting to the end of my tether with this disease and going to the GP in between consultants appointments was making things more complicated. I can't believe that they left me 4 months from decreasing my meds till they want to see me again knowing it takes 6 weeks to settle.
I'll keep you updated x
It's amazing what happens when you throw money at the problem.... I went private and wanted to hug the endo I saw. He was wonderful. Listened, asked the right questions and was the first NOT to take up 20mins of the appointment incorrectly explaining how the thyroid works.....
Good luck! (And yes my appointment came 3 days after I rang too) x
Thanks. I hope this endo is as good as the one you saw. Its a shame we have to pay to be treated well and actually understand the thyroid. I've got a list of questions I want to know x
Best of luck...I too am preparing to go private if the endo decides not to take me on, so it's good to know it can be done quickly. All this waiting about for tests and appointments just makes us feel worse doesn't it?!
Can you tell me if it is possible to go privately in the UK without seeing a UK GP for a referral. One of the possibilities I have been telling myself is that I could come back to the UK and see someone privately but not sure how you arrange it.
You will need a GP referral letter if you are using medical insurance but if you are paying yourself then all you need to do is find a consultant you would like to see and make an appointment directly.
Do you not have this possibility where you are? It would be terrible if you have to come back to the UK just to get your health sorted out. Good luck x
I've suffered for years and accepted gp inferior care I Can muster money up for a private endo n bloods it would be worth it ! Now do l cause friction with gp iif l do this? I need a good endo in Newcastle area anyone know one? Thank you so much l always thought you needed a referral????
Before you consider spending out you might want to ask your GP for an endo appointment and if not I'd get a second opinion.
I wouldn't worry about upsetting the doctor they should be worried about getting you the right treatment. It's your right to feel comfortable and be confident in the doctor who is treating you.
I will probably try here again (first Endo no hope at all) but you know when you are not feeling well, even with a good level of French - all this takes some real dealing with in a foreign language. Sometimes it is hard to get the real detail across.
Not convinced that any doctors are speaking the same language as us though!
That must make things so much more difficult and confusing. As you say most doctors don't understand this condition but trying to get it across when you don't speak the same language must add to the stress you're already feeling.
Don't give up, try a second opinion in France and see if there is an English speaking consultant or translater that could make things slightly easier. X
Good luck Leigh, I had my 1st NHS endo appointment yesterday and he said levothyroxine doesn't have side effects, my weight gain is from not being mobile and my anxiety I was feeling was due to old PTSD. So be interested to see how you get on. Good luck.
I'm not an expert but I wouldn't be happy with what they told you to be honest. Weight gain if you're hypo won't stop if you get more active. Its hormonal so moving more won't make you lose weight. Anxiety is also a symptom of having under active thyroid.
I don't want to scare you but I would get a second opinion as this endo appears to be blaming everything other than your thyroid for the symptoms. My GP did this for 3 years with me until I went to a nurse practitioner who referred me to an endo.
Anxiety and weight gain have a variety of causes which need to be explored. The thyroid is one cause, but by no means the only cause. Reduced mobility can undoubtedly lead to weight gain. Good doctors will consider a range of different possibilities when determining the cause of symptoms.
Hi Leigh 3 years bless you that's a long time, I've been struggling with the meds just over a year, I'm a Paramedic and when I noticed the symptoms put two and two together, I was fobbed off, they increased my dose to 150mcg as my levels were off, at which point I looked like a female Adrian Mole and was beside myself. I said I need to stop them and the Gp said it would be against her advise, so I reduced by 50 mcg, nil spots, half a stone lighter and had lost the bear with a sore head. She then referred me! Urm! I will wait for my test results and try and be seen by the lovely endo (according to staff). Please let us know how you get on, you've been dealing with it long enough, too long, all for ego's!
Good luck with your appointment! It took me 18 months to get a GP referral (private health through work) and the first one I saw was, to be, rubbish - was insistent sleep aponea was causing symptoms, pill was causing weight gain etc etc - but I changed endos and have been amazed! He has made me feel like I'm not going bonkers, done (and is continuing to do) loads of tests and so far we have discovered very low vit d and very high cortisol. It's amazing what a good consultant can do.
Let us know how you get on, got my fingers crossed for you x
Marfit
Hi Leigh,
Having read that you are seeing an Endo at Brentwood Spire I would be very interested in how you get on as I am also considering going private and will have to pay for a set of blood tests myself,so important to see a good Endo.Brentwood Spire is very near to me.
I am having a TSH test at Brentwood Community Hosp next week having finally managed to get a small increase in my thyroxine.However,I've never seen an Endo and just want to get a much more detailed set of readings to establish whether more can be done for me.
Good luck with your appointment,I hope it goes well and I would really appreciate any information that you would be prepared to pass on.
This support group has certainly opened my eyes and given us all a chance to gain more information
I'm going to go private too. NHS doctors and palliative nurses making me sick. I failed another thyroid test last week. I have vitamin B 12 deficiency. And I have Myxedema I am heading for a coma with this
I have all the symptoms of hypothyroidism and candida. I asked for T3 and T4 but what I got was TSH test . I found a blood test site on amazon called Spire Hospitals and they do tests for £109 but I may be being stupid. It's a sad case when we pay into the health service we get none
Candida is opportunistic when you're fighting other stuff. I've had it triggered by PPI [Antacid] and Steroids.
Don't feel stupid- if you read enough on here you will recognise the trend in TSH 'pole leaning' by Docs...
Limited tests MAY not throw up an easy answer- but knowledge is power and you may ask for guidance on FreeT3 or cortisol tests. {The latter not while on cortisone meds for Candida]
I've paid more privately -but still in the early stages of digging. TPOAntibodys could be useful, also!
I've just 'gone private' too! I saw a GP [non Endo] in local private hospital.Will not be able to treat me though- done under Health Screening self referral.He quickly got on to detail and checked some earlier results and agreed to Thyroid Function Profile, Free T3, TPOAb and 9am Cortisol checks from one sample, done today.
Could be a wait for some results ,but the T3 may be the most important [refused by Lab NHS] and was also the cheapest-so hard to see why it was resisted so much by them.
The Reverse T3 comes in at £122, so I hope the TPOAb test is low making it not needed, if T3 OK.
A shame that we are forced to pay- but it can be done.
Problems may be something else but I have co conditions all pointing to Thryoid susceptibility- apart from persistent High BP, but even that is more often normal now -on 3 half dose meds, which never happened years ago. With steroids BP rocketed up.
Joining the dots would be a good test for new MDs methinks, on occasion....
The T3 test £34:50 -and when you think of its importance, the obvious conclusion is that the NHS has not got the resources to prescribe and monitor GP managed cases, with their existing lack of working knowledge outside the TSH 'magic line'.
It does seem odd that a Lab can lay down the law in a medical judgement when they have no knowledge of the patient.
The rules need to be changed. There must be a legal route where the obscuration between legislators , policy decisions and medical staff/lab can be investigated.
Too much blurring of the boundaries at the patients [who IS paying, ultimately] expense
>It does seem odd that a Lab can lay down the law in a medical judgement when they have no knowledge of the patient.
It depends on the clinical details provided by the requesting doctor, and also on the results of the TSH test - which is performed first. If the TSH is suppressed, T3 is likely to be tested automatically ie. even when it was not requested. This is because T3 levels are very useful in the diagnosis of HYPERthyroidism. If TSH is elevated, free T4 is likely to be tested even if it was not requested. This is because free T4 is necessary to establish the diagnosis of primary hypothyroidism. The initial diagnosis cannot be made simply by testing TSH, although it is a useful test for screening and monitoring purposes. Some labs may limit which other tests can be performed if TSH if normal.
If the doctor has requested T3 and written 'query HYPOthyroidism' in the clinical details box, the test is likely to be refused. This is because T3 is conventionally not used to diagnose hypothyroidism. The reason is that T3 levels can still be within the normal range in hypothyroidism, but may be below the normal range in sick euthyroid syndrome (non-thyroidal illness syndrome, in which TSH is often suppressed and T3 low due to the body attempting to reduce the metabolic rate during serious illness or starvation). As a result, T3 is less useful than T4 and TSH for routine diagnostic purposes in patients suspected to be hypothyroid.
If the doctor wants to test T3 because they believe that the patient may not be converting T4 to T3 in adequate quantities, it might be worth speaking to the lab in advance to ensure that the test is authorised. At the very least, adequately detailed information needs to be provided in the clinical details box. If T4 is not being converted to T3 in adequate quantities, T4 and TSH both tend to be elevated. A similar pattern of elevated T4 and TSH is common is patients who haven't been taking their levothyroxine regularly, but who took it (sometimes at a high dose) on the day of the blood test +/- a few days before.
The problem for NHS laboratories is that they get a very large number of requests which are either not appropriate or accompanied by inadequate clinical details. If sufficient clinical details are given, the consultant chemical pathologist/biochemist can provide additional information to help the requesting doctor interpret the test results, and can suggest additional tests which may be helpful in reaching a diagnosis. The requesting doctor should list the patients current medication in the clinical details box. Some medications interfere with thyroid function and affect the interpretation of test results. For those on amiodarone, the lab should be happy to measure T3 due to the complex affects of amiodarone on they thyroid.
I know there's a tendency to view laboratories as the enemy when they refuse to perform certain tests, but they are only trying to perform the most useful tests whilst not wasting money. The provision of proper clinical details should allow them to understand the rationale behind the tests which have been requested, making refusals unlikely.
If the lab are expected to do a test-it should be done. There are bound to be many tests that are marginal or even wasted when the results first come in.
They can't all be clear cut in the least way.
Also, if earlier tests levels are known, even if good, [or bearable even] then later on comparisons can be made.
It's been said on here- how can someone be judged ill when nobody has a clue as to what figures were running when well?
The labs job is not to save money but to test samples and advise the Dr on belalf of the patient.
I am off to see Dr S in Brmingham on Friday and am so excited that hopefully he will actually listen to my symptoms and not just look at my results and "well that's normal" and ignore my cry for help just because the blood test says "within limits". I so hope he cam help me with my excessive tirednes and lethargy and may be even help with the 3 st I have gained in the last 2 1/2 years.
I saw an endo at Spire Bristol last Saturday, I emailed the Consultant with my results and concerns, mainly vit d deficiency, and she was happy to see me without a GP letter, although I did ask my GP to write as I want to keep her on side. I paid £300 for a first consult but I was with her for 2 hours so worth every £. She went over everything and thats a lot as I have many health probs. She is asking my GP to do a lot more blood tests but I'm going back to Spire for a short synacthen test. You have to be aware that everything costs a lot, it would have cost me £15 for the nurse just to take my bp ! Consultant did it instead, and you have to pay for each blood test and they can be £50+, my synacthen test is about £120 so it can amount to a very large bill if you have lots done, best to find out first if the Consultant is happy to ask your GP to do all the tests, thats why it's a good idea to have your GP on side !
I have my 14th NHS endo appointment on Monday and after 4 years I am right back where I was in the beginning - I have lost my treatment and my diagnosis and as soon as I have got Monday out of the way I shall be onto the GP asking for a referral to Dr Skinner.
Well my first appointment went well. He did blood tests while I was there and tested for T3 that's never been tested before and I have a scan booked for 18th June which has never been done before and a follow up on 2nd July.
So I should have my future plans sorted before the nhs endo would see me next! 3 options to explore:
The private GP [Hospital based] is unable to treat me whatever the result -so it will be back to 'a GP' in my local practice and thence the same Endo [if at all needed ] who refused to dig down on my multiple symptoms in the first place, unless I can can insist on a second Endo opinion elsewhere.
No MRI or T3 test to rule out head injury impact - but cleverly mentioned in the letter post appt. I wonder why no reads between the lines in the NHS?
Is it because there are already too many rules-& they are blinded...?
The private GP is not an 'Endo' and is working under a Health sceening self-referral from myself.
I was advised that I would not be treated, after tests by this route, so realise that I would have to convince others,if and when results show such need, GPs do not administer T3 without Endo back up, I gather, in any case. The big result would be high TPOAb, with low T3, in my view.
Cortisol would need further checks, like yourself, if low -on a 9am reading.
The NHS endo just wanted to treat extraneous, [non thyroid] symptoms, without finding the cause[s] and I was unhappy with this approach.It could be a co- condition to UAT.
I haven't got the letter with full details yet but over the phone I got this much:
TSH 4.84 [was 2.8 over one year ago and 2.0 in Feb.this year]
FT4 14.9 [12 - 22]
FT3 4.8 [4 - 6.8]
Cortisol 9am 463
Tg Ab <10
TPO 8.93
Looks like sub-clinical Hypothyroidism to me.
I hope to pursue [with the GP] further options.Pleased that no antibodies showed up,anyway.
The private nurse did say lots of people do well on Synthroid- as my TSH appeared high for my age [better off around 2.0] when I discussed these results.
Maybe so, - Is it worth a try, if I can get the right dose and get away with it or does it mess up the glandular balance too much -once started?
What is the range for TSH? Its usually between 0.5 and 5 so yours is on the high side. They would probably monitor you closely because they won't want to start you on thyroxine while your levels are still within range but depending on your symptoms they might decide on a low dose.
Its always worth pursuing when you know something isn't right with your body and your bloods are creeping up.
Thanks- The range locally for TSH seemed to be consistent at 0.38- 6.9 previous to this , so I didn't ask as I know it should be a lower upper limit,say below 3 for good health.
That's why the latest increase is of note over such a short time. I think they will say that in my letter on results [Not a referral]
I still feel adrenal insufficiency may be involved in energy levels though and may need to think about 24hr tests giving a clearer picture.
No doubt as we get older more marginal states of our systems interacting can give rise to the 'we're not getting any younger' comment- but it doesn't have to be like that.
I CAN GO PRIVATE!!!!! Weirdly I hadn't thought of that. I'm not 100% confident in my doctor especially the incredible long time in between visits and the lack of explanation of my tests and condition. Most info I have learned from various thyroid websites. This could be something I look in to
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Should i wait o go private?
couldn't go through with the biopsy they sprung on me!
Should I go private or NHS?
Private blood tests
Soldier on or go Private Dilema!
