I'm in Scotland and am at a loss now with my gp, who would only refer as far as a consultant physician (general physician and not an endo specialist, at local hospital) who said TSH test is THE most accurate test for thyroid and left it at that, my tsh came in at 0.7 (but with tons of symptoms, history of hypo and family history too, but she didn't take any symptoms into consideration) and she said because it's in the 'normal' range I wouldn't be referred to endocrine. So here I am left with no where further to go and I'm considering whether to push for a referral (again) from gp or look privately, which I just can't afford and I was wondering if anyone here can share their experience of anyone they've seen in Scotland, on NHS or privately (I'm aware of Dr S) ?
Thank you for anything you can share.
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dimdims37
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Sorry can't help I am in same position, looking for NHS thyroid specialist. All endos in my health authority do diabetes. My GP says he is looking for someone out of area but feel I am being humoured. I wish you luck and if I get any info will pass it on. Anne
It's so hard .... we have to pro-active for ourselves and insist (without emotion) on the best care for ourselves. If I get anywhere and get anymore info then I'll definitely pass it on, thank you so much for replying. On here might be the best place for info.
This post goes back 6 years and since then I have had many changes. I was indeed referred to an endocrinologist in Glasgow. Unfortunately he was the chair in neo-natal diabetes and another title in diabetes. First thing he asked me was if I had seen a psychiatrist!! Absolutely useless! So I spoke to my husband and we decided we would spend the money to go see Dr Toft in Edinburgh. I had booked a half hour appointment with him, I was with him for 2 hours. He was rather disturbed to find that every single endocrinologist I had seen, 3 of them, he had trained and not in the way I had been treated. Indeed he thought he had trained them better! Long story short, my GP was happy to do tests Dr Toft suggested and forward results to him. At the end of the day my meds were altered through Dr Tofts instructions and was given instructions on what to do when I realised that my symptoms fluctuated. I have been well since then on liothyronin and levothyroxine. As with most things in these threads, your doctors are so important in how you are treated.
Hello, can I ask where you saw Dr Toft? I cannot seem to find any recent information for him. I would love to see him concerning my Thyroid. Many thanks Julie
I saw him at the Spire Murrayfield Hospital in Edinburgh. I've looked for his info but the pages seem to have been taken down. You could try giving them a ring? They should be able to let you know if he is still practicing. He was active in Thyroid UK, again they may be able to tell you what hes' doing now. Sorry couldn't be more helpful. Good luck an please let me know how you get on.
My endo *seemed* good to begin with: all 'well get to the bottom of this' and 'your gp isn't a thyroid specialist', but here we are, almost a year later, still no clue about why I've had 3 miscarriages, no-one seems interested in finding out, I've now gone full-circle with my meds: increased, lowered, lowered, back to where I was, and all we've discovered is that I have a cyst - and no-one is keeping an eye on that either! Totally fed up. My endo is at Forth Valley Royal.
So sorry to hear about your 3 miscarriages, I had 2 and have had infections (different areas) since March (4) and a whole list of thyroid / adrenal symptoms but no one thinks these are related!! It's so frustrating when you try to be pro-active and only want to sort it out but get closed doors with the GP and they're the gateway to everything else! Thank you so much for replying, fingers crossed we get somewhere. Looks like we really have to push. Can you get re-referred to another endo?
I think I'd rather give up completely than go to yet another medical person who knows nothing. So fed up. Hubby wants to have kids, and I've been put right off. I dunno. Need to go and get bloods done again soon (but feel a bit 'what's the point?'), and will speak to endo again after and tell him how unhappy I am. I've had migraines for years (was given painkillers and told to take them) which *I* think may be linked to the cyst, but until they remove it, I'll not know for sure. All just a mess. Need an MOT, I think!
Not surprising that you've been put off trying to have kids, it's a heart breaking experience going through a miscarriage, let alone 3. Don't give up, focus on getting strong emotionally and physically and I bet you'll feel more ready for kids. Above all don't give up. When there are so many things going on at once it's all so overwhelming and when we get upset, they think it's something mental! I'd like to see one Dr go through and be happy with this kind of treatment ... or lack of. I'm trying to keep emotion out of it completely when I see the Dr and focus on facts, risk and symptoms, all undeniable and you must keep going. We must stay focused on getting well Mrs_Sch!!
I got suspicion of thyroid problems, since i'm polish i went to the endocrinologist in poland, he made screening and blood test. Obviously my TSH was in norm but he found a mass in thyroid itself and because of that i had antibodies of thyroid done also, which were triple the norm. Doctor diagnosed hashimoto (biggest reason for pregnancy problems). Same may be with you guys and ur miscarridges, anyway since i live in edinburgh i went to gp with my results to find a doctor who can start my treatment at place, doctor said i must have my blood test done again to have it in english, so we did. Now i just called them to hear "ur blood test result is all normal" and now i'm really mad, how the hell it can be normal if my previous test clearly wasn't, and there is a mass in my thyroid and i even gave them screening picture. I'm tired of incompetance of someone in there and i'm searching for endocrinologist myself just to go private. If not i will just go back to poland coz its rediculous. So guys if u have pregnancy problems and no diagnosis i recommend to read about hashimoto disease, gl.
I know it's a bit late and you're probably not on here now but I think I may have an answer to why you're having miscarriages. It could be because you have a problem converting folic acid into folate. There is a huge proportion of the general public who have this problem but are unaware of it. I only found out about it as i was getting a pharmacogentic test done as I had a feeling certain drugs I was on were not working for me. The results I got were that I have a mutation on a gene called the MTHFR gene and this means I have problems converting folic acid to methylfolate so I'm only working at 60% of what normal people are. i also have problems removing toxins from my system as a result of this. Thankfully I only have one mutation on this gene but many other people have the double mutation which means they are only working at 20 -30% of what they should be. This genetic problem is a cause of miscarriages and you can get a test for it. The test I got did cost £800 though but has given me a lot of help and answers a lot of questions for me as to why I suffered from more side effects from certain drugs than other people and why pain killers didn't work for me. The company I got tested from was at Chase lodge hospital. It's turned out to be a very important test for me and I was told to keep a copy of my test on me at all times because if I am in an accident and I get given morphine for pain at the standard dose then it would kill me because I metabolize it too efficiently. The way to help with the folate problem is to take a high dose of the methylised form of folate.
Hi have they mentioned hughes syndrome to you I had few miscarriages and thats what they discovered. It has some long name like antphilipiside?? But hughes syndrome will get u there google it. Hughes is the professor who found it apparently it causes miscarriages . Worth looking into . Good luck . I have it , it causes blood to clot i take an aspirin every day for it.
Hi There is a well known endocrinologist in Edinburgh who lots of people like. Try e mailing Louise as she has a list, louise,warvill@thyroiduk.org. Just a thought, best to see an endocrinologist who is a consultant NHS and often privately, there is no such thing as a private doc who works in the NHS. A consultant privately or NHS needs a referral, find one of your choice first, then ask GP.. If privately they write to GP for the treatment and also . if asked, for the blood tests which is the very expensive cost. Consultants have a laid down charge by the B.M. A , more first appointment and more for a Prof. private docs none of this applies.
Thank you so much for that info, I'll email her and fingers crossed. This is the tricky thing about GP doing referrals. They don't know enough and close their minds to thyroid and don't recognise adrenal problems at all! NHS would be the best first step but again it's down to a GP. Did you see someone in Edinburgh? Thank you for taking the time to reply. At least endo don't take only tsh into consideration, like most GPs.
Hi No I have a wonderful Endo but too far for you. I just have read about them.I have learnt to always find the consultant, then ask for a referral as you say GP`s not wonderful at thyroid but also tend to refer to the local endo etc. You mention adrenals, they usually like to get the thyroid right first as cortisone should only be taken if needed. Also the only reliable test ( endo ) is a 24 hour urine test with a cortisol tablet at midnight, script, and then a blood test at 9am.
The other thing I do is when I see a new consultant, especially for Endo it is a good idea to phone their sec and ask what treatment they like, ie T3? You can ,also often tell what they are like from the sec as nice ones who are good at listening tend to have nice secs etc.
That unfortunately is a huge problem, as trying to treat the thyroid before the adrenals is the wrong way around. In very simple layman's terms, If the adrenals are not healthy they will be aiming to keep your body in rest mode. Therefore trying to treat hypothyroidism (speed things up again), is directly opposed to how the adrenals are operating, leading to problems converting and or utilising the replacement thyroid hormones. That in turn leads to excess thyroxine pooling in the body which can turn toxic. I'm not an expert and I'm sorry, I don't have a reference but I have read this a few times now.
I'm not sure how this applies to 'adrenal fatigue', but if you're suffering from an adrenal/pituitary disease, hypothyroidism 'treatment'can make you very ill.
I can not tolerate it at all anymore, have practically all the symptoms of adrenal insufficiency, apart from salt cravings, possibly masked by my unbelievably insane sugar cravings, which I've just found out is very probably hypoglycemia. I even have Hyperpigmentation, low cortisol morning 109, and (strangely) low ACTH morning 10 . My endo is STILL telling me he can do nothing for me.
Until it has reached the point of showing an abnormal Synacthen test, adrenal insufficiency does not exist apparently, and he actually said he didn't believe me that thyroid meds were making me ill.
A very strange set of affairs as you can go from being perfectly healthy, happy human one day to having full blown Addison's disease /Secondary Adrenal insufficiency the next.
I'm in bed nearly all the time now, and my balance is so bad I can no longer walk in a straight line at a regular walking pace.
I'm sorry, I keep meaning to make my own post and didn't mean to type so much here, but really wanted to get that 'adrenals first' message out.
WHEN I get better after 14 long years of being ill, I desperately want to try to do something to address this disgusting attitude the NHS has with HPA axis and thyroid treatment. Grrrrr
Well after years of being ill my career long gone being able to function extremely difficult and in bed sleeping 70% of the time I have almost given up. Diagnosis hypothyroidism 4-5yrs ago now a nodule on one side and lesions on the other side. And the endocrinologist having never met nor spoken to me refused to see me accused me of taking meds wrongly. If he had taken the time to see me then I would have told him that I have always been very careful with meds same time every day etc.
Hi I live in edinburgh and I see Dr Skinner in Glasgow. He has a clinic there every 4-6 weeks and he is very good and specialises in thyroid problems. You can read more about him on the TUK website. You need a referral from your GP which can sometimes be tricky but if the GP refuses you can get a ref from a private GP. He charges £220 for first appt and £110 followup. He usually want to see you after 3 mts and then 6-12 monthly depending on how you get on. He prescribes NDT but is not keen on hydrocortinone unless you really need it. It is a lot of money initially but he will help you to get better.
Thank you so much for sharing that information, that is so helpful :). That is a lot of money, I'd have to try and save up for a while to see him, plus the travel - I live on an island . My GP doesn't want to refer me to endo, despite this going on for ages. Why in this day and age are GPs not doing more research and training in this area?! Especially when so many people are affected. The other thing that made me consider someone else apart from Dr Skinner (apart from the £) was that he is thyroid only and doesn't test adrenals. Thank you so much. Hope you have found it worked for you. Debs
Thanks so much for that. She said the TSH test was THE most accurate test for thyroid (and everything states it isn't!) and didn't feel it necessary to do anything else. I'm at the low end or 'normal' range and because it comes in that 'normal' range she wouldn't refer elsewhere. It would of been great if she had been more open minded. She implied I was there because of my weight!!!? I said "do you honestly think I would be here if I was concerned about my weight?! I wouldn't be wasting your time or mine!" Then she said she thought I had chronic fatigue syndrome and ignored my history of thyroid, family history of thyroid, my mum having adrenal carcinoma, my miscarriages and long list of on-going physical symptoms all classic hypo symptoms and possible adrenal symptoms. It felt like a joke appt and I was waiting for the hidden candid camera to come out! I'm at a loss. The only thing she agreed to do was give me big containers to wee in to , to test my cortisol - and that was following me saying I would have to go private and her saying I'd be wasting my money. Also, I was in no way being confrontational or cross, I told her I was doing my best to be pro-active about this. She said she would see me in 2 months ... " but only to prove to you that nothing is wrong here". Thank you for your reply and I'm glad your son is seeing someone who is open minded, it makes all the difference.
The TSH is indeed incredibly accurate... for testing the amount TSH in your blood. That's pretty useless in some cases. Recent research shows that this doesn't correlate well to thyroid function in hypothyroid patients. Your GP is mistaken and clearly hasn't been doing her reading to keep up to date with recent advances. Sorry you were treated so appallingly
Debs, that sounds similar to my story in parts! My endo tested me for Coeliac condition, even though I know it is DEFINITELY not that (and told him so). Wasn't surprised when I got a letter 3 MONTHS later to say that I didn't have it. I sought legal advice for medical negligence after my third miscarriage, as my GP had wrongly medicated me and given completely the wrong advice. Current GP is hopeless, but still fractionally better than the last GP.
I saw Dr Toft ,8 years ago after trying to get sorted by first my GP and Dr Skinner. I have been on T4 100mcg and 10 mcgs of T3 ever since. I won't say that I always feel 100% all the time but I have not had the problems that I had either when I was on T4 alone(150/175mcgs alternate days or natural pigs thyroid. I never got stabalised with them. Edinburgh Royal Infirmary has good reputation built up by Dr Toft bef ore he left. On 5th October Edinburgh the British Thyroid Support group in the Edinburgh Area run by Margaret Mcgregor, are holding an Conference / Support day with speakers in the Chancellors Building Royal Infirmary. It is open to all people in Edinburgh area or beyond contact her at m2mcgregor@aol.com. Speakers are from The Royal Infirmary Edinburgh , Western General and I will be going myself. Good luck M
I cant say I am happy with the service at RIE after Dr Toft left. All the consultants except 1 have diabetes as speciality and non are willing to concider NDT. So I think the good reputation has more or less gone.
I have had a couple of appointments since Dr Toft left but have not seen Dr Nicola Zammit who people in the Thyroid Foundation support group in Edinburgh seem to have foundhelpful NDT ias FAQs I know is not prescribed by endocrinologists in the National Health Service.M
Oh dear roslin and maggiew .... so maybe Glasgow. I was talking about going private with my other half and it's just not an option to plan for this, just now anyway. Ridiculous waiting game. Will perhaps email Margaret Mcgregor for some direction/advice. Thank you so much. It's all so helpful to everyone looking for answers and sharing experience via this forum. I mentioned to the Dr that I had found accurate information on Thyroiduk and it was acknowledged at all. Oh my goodness, when will the thing that is our fuel, our 'gear box' be recognised and treated as important as it is, by GPs !!! It's beyond a joke.
We are told that it is not prescribed by NHS lothian but we actually dont know. I am writing to my MSP to ask if there are any prescriptions for NDT being issued in Scotland. I will use the Freedom of information if I need to but I am starting with my MP. NDT is prescribed in England on NHS to some patients ( and possibly in Scotland)and in the name of equity of care I am trying to get it from my GP. No luck yet and it is not easy when I still feel so ill to do very much, but it makes me furious.
The Dr you mentioned and the Thyroid Foundation is on the opposite side in the scottish petition debate. They are against NDT and adrenal testing( well I dont actually knoe NZ personal opinion ut she tows the GMC line). There is a round table discussion coming up in October and it will be interesting to see what comes out of it.
I will be very interested to here how you get on with finding out if NDT Is prescribed in East Lothian. I have decided to stick with T4 and T3 as I do reasonably well oh it. Being in my early 70s and really pretty active I feel that fighting has become lees important to me personally but for others who don't find this combination I would like to see alternatives available. Good luck. Maggie PS sometimes even getting T3 cash be in short supply from the chemist and I have to order well in advance my fepewr prescription.
I tried to find the old post about this but couldent find it. the next thing that is happening with the Scottish petition is a round table discussion. TUK, BTA, RCP (and other I cant remember)and ofcourse the scottish ladies. Unfortunately this is a closed meeting but I am sure we will be well represented by TUK and the ladies. My concern is that there will be a lot more representatives for "the other side"
Did your GP or the consultant physician do any other tests apart from TSH? I'm assuming you don't have a diagnosis and aren't on any medication? A TSH of 0.7 is very low and on its own is never going to indicate hypothyroidism. Did they test T4 or T3? If you have many symptoms which indicate that you are hypothyroid, a low TSH might be an indication of a pituitary problem - ie you're not producing enough stimulating hormone to get the thyroid producing enough T4 and T3, but without testing these there is no way of knowing. I would push to get these tested first.
My diagnosis from the Consultant physician who said TSH test is THE MOST accurate test for thyroid (I'm scraping in just at the normal range) .... she wrote to my GP saying her diagnosis is Chronic Fatique Syndrome!!!!!!!!!!!!!!! I am speechless. Imagine not listening to or thoroughly asking a patient who is trying to tell you their on going symptoms, thyroid history, family history. But deciding on CFS because you're tired. At best shocking, at worst dangerous.
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. My GP doesn't want to refer me to endo, despite this going on for ages. Why in this day and age are GPs not doing more research and training in this area?! Especially when so many people are affected. The other thing that made me consider someone else apart from Dr Skinner (apart from the £) was that he is thyroid only and doesn't test adrenals. Thank you so much. Hope you have found it worked for you. Debs
Anyone know of good Endo(NHS or private) in Edinburgh ?.
Anyone find a good endo in South Wales 
Should I go private or NHS?
