Hi there. Well my name is Colleen and I will be 54 I two weeks. I have had underactive thyroid for over ten years. I was eventually diagnosed by Dr Skinner in Birmingham. I had to do this as my GP simply could not look beyond the range of normal levels. So Anyhoo since then things have changed. When I was 41 I had a hysterectomy after years of suffering since I was 11 (not exaggerating) with very painful, heavy periods that would last up to 12 days. I have two healthy sons both born by caesarean and to my knowledge had two miscarriages. So I've toddled along managing as best I could. My husband left me when the boys were 4 &7 so I brought them up as a single mum. So two years ago I started having chronic diarrhoea which lasted for over a year. I had some rather awful tests done but no cause found. I lost in under 5 months near enough 3 stone in weight. (Every cloud has a silver lining ladies 😉) I also got myself a great case of shingles which took a long time to clear up. Anyways I digress. I have now regained close to 2 stone of that weight and I feel extremely unwell. I cannot cope any longer with my GP surgery who manage to make me feel guilty embarrassed stupid etc etc. You all probably know all the other emotions. I am having trouble swallowing it feels like where an Adam's apple is I am being pushed in the throat. I am in pain and I don't know if that's Fibromyalgia or.Something else. I had to give up my part time job that I loved because of the above problems. I'm not right. I know it. I don't know why but I need help. I have decided that I need to go private as NHS cannot help me. I don't know if I should see an endocrinologist or some other specialist. I live in thanet in Kent. Any recommendations please would be so gladly received. I will travel but perhaps not as far as Birmingham this time 😕. I want my life back in fact any life back as I sure don't have one now. I want to work again and sleep and not be afraid all the time. Many thanks in advance and I apologise for my ravings. 😲
Looking for private consultant: Hi there. Well my... - Thyroid UK
Looking for private consultant
Do you have any thyroid test results with ranges - maybe you are under medicated. If you can post them with ranges then people will comment. Do you have Hashimotos ?
Also it may be a good idea to have the following tested - Ferritin - B12 - VitD - Iron - Folate. All need to be good in their respective ranges for you to feel well and for the Levo to work efficiently in the body.
It does sound as if you have suffered for a long time and it could be low it the vitamins and minerals. Or also not enough T4. Fibro type pains can be due to low B12 - VitD or T3.... I am not a medical person - just a fellow sufferer that has improved so much by following the advice of others 
You could have Home Tests done through a Private Company - as detailed on the main website of Thyroid UK. Well used by people on this forum.
Do hope you feel better soon.....
Highly recommend looking at this very well researched and respected site mercola.com - Good luck - hope you feel better soon
hI If you want to travel I know a good Endo and gynae consultant in the Midlands.Make sure you have a CA125 blood test,and the thyroid tests, sounds like thyroid to me.
Jackie
Jackie I would be interested to know who this is I will pm you
I have just seen your posts so know who your endo is now. Although confused, is she a gynaecologist???
I run a thyroid UK support group in West Midlands /Warwickshire so know several people who see this endo, yes she has helped some but sadly tells people that she cannot ignore the TSH which doesn't help many people.
Sue
Dear Colleen I'm so sorry to read how awful you feel and how long this has been going on, you've had a tough time. I can't offer advice, just sympathy and I hope you soon feel better. Just one thing, I've only just discovered that HRT and St John's Wort) prevent our tissues from taking up whatever they need from thyroid hormones but leaves good circulatig levels showing in blood tests. Am about to try leaving out the progesterone because wrinkles are better than feeling so awful. Penny
Thank you Penny and I bet your gorgeous wrinkles or not. I am not on any form HRT though undoubtedly that will be my GPS next suggestion. I was on hormone treatment for my endometriosis and it really did not agree with me.
Good luck with the changes your making it will be interesting to see how it goes Colleen
Hi there.. I see a private endo at the Warwickshire Nuffield who I have found incredibly supportive. private message me if you want the name. We're not supposed to name doctors on here.
I feel for you!!! Wish there was another Dr Skinner but sadly there isn't.
What thyroid medication were you taking under Dr S? Did your GP just stop it?
Seeing an endocrinologist privately doesn't necessarily help if that endo is a go by tsh.
I live in the Midlands Jackie and haven't found a good endo, I travel to Sheffield so will pm you to find out who you are referring to.
If you have positive thyroid antibodies then how can they say you are not hypothyroid? Have you had them tested?
I would certainly change GP for starters.
Sue
Hello thank you all for replying. I didn't sleep at all last night instead was reading the forum. I am diagnosed as underactive thyroid. Also Fibromyalgia, hiatus hernia., reflux, IBS and Irritable bladder. Unfortunately I also have a long history of depression since I was 11. My Dad took his own life at home but was in a coma for weeks and died from pneumonia after he was taken off the ventilator. I have found out a lot about his family who were from Ireland. All the brothers were ill with it. Several were hospitalized as I have been. Any GP I see reads my notes and make assumptions (which you can't really blame them for I suppose) but actually I am an intelligent functioning woman when I am well.
So Dr Skinner confirmed my hypothyroidism and with my GP at the time he got my treatment regime up and running. I was.on 150mg thyroxine and it did help me a great deal. But over the years subsequent doctors registrars etc have kept trying to cut it back. When I moved 17months ago my new GP reduced it too 100mg. He also put me on Amitriptyline despite my hesitation but I stopped that within 2 weeks. I have gone back and forth and after much debate he has me on 125mg. I fear though that the damage was done. When I came here I weighed 8st 4lbs. I am 4ft 11" and a small frame. I now weigh approx 9st 10lbs. This gain has worsened everything for me. I am in more pain my mental health is poorly self esteem out the window. I have to say he makes me feel like a hypochondriac and a fool.
I found out last week that hopefully I am going to be a grandmother next year and I want to be a part of the baby's life and help them to care for their child. I have to change all that's happening and I do not have faith in my GPS surgery anymore.
Hence although I cannot afford it I am taking my treatment into my own hands and I want to find a decent private consultant who WILL listen and can think outside of the box.
I have a friend who is going to go with me to my GP because I will need a referral and I will ask for tests on all the above you have advised. I will go back to the GP because I will face my demon.
So I live in Minster in Thanet Kent but am happy to travel for a good Doctor.
Blimey sorry for going into so much detail above. I have tried to explain to the GP. I wrote it all down. A list of symptoms what I was eating, feeling. He didn't read it just told me off for not making a Double appointment with so many problems. It was my first visit.
I also have pins and needles, cold feet and hands, mad temperature swings,palpitations, intense migraines/headaches, weird vision, bloating or swelling of my abdomen. The usual range of gastric issues.
I also take zopiclone to sleep, sertraline for depression, propanonal for anxiety and heart palpitations and when needed IBS medications. I have had surgery to both shoulders for Adhesive Capsulitis or as I like to call it Frozen shoulder lol. Unfortunately pain. Is still there though I have about 50% of movement now.
I shall now desist and cease from my whinging 😲 any advise or recommendations I will accept with great appreciation. Thank you lovely peeps.
Colleen 😀
I saw a lovely private endo in Bristol last Friday who prescribed T3 ( now just waiting for Boots to get it in for me!) I, like you, also have hiatus hernia and irritable bladder. When you were having tests for your diarrhoea, did they take biopsies? If so, did they look for microscopic colitis? Last year i started to suffer badly with diarrhoea and when I had a colonoscopy and biopsies, I was diagnosed with Lymphocytic Colitis, another autoimmune disease. They say it's rare but I think that is because they don't look for these things. It might be worth finding out. I also have spondyloarthritis which apparently goes along with the LC.
I hope that you start to feel better soon.
Clemmie
Hello Clemmie. I had my tests done at Beneden hospital. They did take biopsies and said they couldn't find anything. I was tested for celiac in 2006 and was.clear. My Mum has Diverticulitis disease and has had part of her intestine removed so I was worried at the time. It stopped as suddenly as it started although I have diarrhoea a great.deal.of.the time with IBS. The only advise they gave me was add fibre and take acidophilus. I have learnt to live with it but cannot bear putting all the weight back on again. I realize it could be much worse with Stomas etc. I have not heard of lymphatic colitis before. I really hope the.New treatment is going to help you. I shall follow your story. Colleen
Hello Colleen,
This site is absolutely wonderful for the help and advice it provides...... thank you to everyone who contributes. I have learned a great deal, and realise we all have to learn as much as we can, so that we are more prepared and informed when we seek help.
There are a couple of other sites you may not have heard of which are also very informative.
Dr Sarah Myhill.....drmyhill.co.uk
and also the British Society for Ecological Medicine, who provide a list of practitioners, and you may find one who is nearer to your home.
The endocrinologist I saw privately works from the TSH result......ao far, it appears, that was a waste of money.
I do hope you find the help you need, and your health and well-being are improved.
Darn it! I forgot to add the web details for the British Society of Ecological Medicine...
it is
Many thanks Tuppence (love your name, very Agatha Christie) I will check it out. Colleen
I believe Dr Peatfeild has a clinic near London. I have seen him and found him very helpful. You can google him or I can look up his phone number for you. He has written a really good book about looking after your thyroid. He does not treat but advises people on treating themselves with NDT and supplements which I think works out cheaper.I also saw the doctor in Warwickshire but she was in my opinion over concerned about TSH and could not treat effectively because of this.
Thank you I shall research him.
I had chronic diarrhea for years (literally!)..had all those awful tests done and they found nothing. Finally, I read an article about aspartame and it sand that IT could cause very severe diarrhea...so I stopped drinking my beloved diet Pepsi and quit using aspartame in coffee and took it out of my diet totally. My diarrhea has totally cleared up..so if you're using aspartame, you may want to try eliminating it from your diet. Also, the throat closure: I had that, too. Finally got a "scope" done and my esophagas (SP??) was closed up pretty good. They stretched it open for me and I am now fine. Other than that, I don't know what to tell you except that I'm suffering, too, with the thyroid issue. My doctor doesn't listen to me and refuses to give me any med. for it because my TSH level is normal. It sounds like you have been suffering so much and I feel so badly for you. Please hang in there...
Thank you sweetness and I do hope your going to be okay too.
I'm afraid I don't have either Skype or face time. I also must keep the costs down as much as I can. But thank you Shauna for taking the time to respond to me and thank goodness for people like yourself who are out there helping. Colleen
You poor thing. Sounds like you've really been suffering for years. It would be a good idea if you could post your latest blood test results. What meds are you on now? Have you been tested for T.P.O. antibodies ? I'm on a selenium supplement as well 150mgs on Levoroxine. Like you I suffered from very heavy periods and miscarriages and also fibroids. I went on the Mirena coil and that really helped my periods. I went gluten free over a year ago, and although my health isn't perfect, it's much better. My advice is lots of research, but do post your latest results and if necessary have private bloods done. Good luck and keep at it.
Best recommendat ion I have is to go to Stop the thyroid madness.com website and buy the book with the same name. Written by Janie Hawthorpe and stories of patients and their struggles. Very good book with all the information you will need.
Hope this helps.
Yes I have looked at a sample of that book so I will get it on my kindle. Thank you for that.
Hi Colleen so sorry to hear of all your illnesses. Firstly alot of the test which are mentioned below, you can ask the GP to do, don't think you have to pay for absolutely everything, Vitamin D, iron Ferrutin etc. can be done via GP. I also strongly recommend Dr Durrant -Petefield of the Petefield Clinic. He is sympathetic and also suffers from the same illness. He is a true expert on the subject and has worked with a top researcher in the states. A friend of mine through him started taking natural form of tablets for andrenal gland failure and pig thyroxine through him, also various vitamins, she is now a changed person and has lost stones in weight! I got to see him a few weeks ago and have just started on a form of cow thyroxine and adrenal gland tablets this week along side a small dose of the Levo. Everysince I started the Levo I have had enourmous side effects eg. lack of sleep, hot flushes for 5 years, hair loss, huge bloated stomach frequently. Gained 2 stone in weight. I am now hopeful that my life is going to change. I am also taking quite alot of vitamin tablets now and may need to take more! But you need to take good quality ones from the internet. If you want to email me separately I can forward you a very informative email from the friend who has made the vast improvements to health through taking the natural tablets. (there is a way of doing it through the site, they won't let me put my email address on the actual blog bit. Dr Petefield has a clinic in surrey (he's on the internet) but be warned he is very popular and you might have to wait a while to see but it is worth everypenny, I can't quite remember what he charges but I think it is around £175 for first appointment but then on you complete a record of your symptoms and every few months you send it off to him and he sends you back feedback, you don't even have to see him again if you don't want, He does phone sessions which are quite inexpensive compared to other doctors.
Anyway good luck with all, I would be interested to hear how you get on. I will post in a few months how I am getting on with the new medication, as apparently it can take quite a while to see results. x
Hi Colleen again, you can facetime or skype someone, it doesnn't cost anything! you just need internet, by the way if you don't go to Dr Petefield don't just go to any endocronologist it can be a waste of money as I have found, as many aren't an expert in the thyroid problems, and can be unsympatheic and unwilling to explore alternative medications. The UK thyroid association can send you a list of consultants but I think you will go far to find such an expert as Dr Petefield. There is a private Doctor in Powys which someone below mentions but she is not taking new patients because she is in such demand. The NHS is failing thousands of people!
Hi madvicky. I am interested in Dr Petefield and Surry isn't too far away from me. I have a GP appt in September on the 14th. My intention is to ask him for the FULL blood tests as listed on here and to get a referral. I have Beneden healthcare and it's possible they will give me cover to see a specialist IF I get a referral. The I think my GP will be glad to send me to someone else lol. I will follow you and see how you progress. Colleen
Looking for reassurance for very high T3 (cytomel - US) dose.
Hypothy in Canada, looking for any advice 
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