I’m really struggling to find a good GP and Endo, my current gp has not been monitoring my hypothyroidism and I have seen him just once, I’m current seeing a endo and have been on and off who has been monitoring my condition however he seems rather oblivious to my symptoms and has more experience within diabetes than hypothyroidism so I’ve been doing a lot of reading on my condition to help myself but after so long of feeling like this it’s disrupting my life and work balance and I don’t want to be treated like I’m stupid
Recommend doctors or endo in uk: I’m really... - Thyroid UK
Where abouts are you in the UK?
Hi there thanks for your response I’m in Lincoln but I am prepared to travel if needed
I also live in Lincoln, I went to see a private Endocrinologist called Dr H M (can’t fully name him on here) don’t bother wasting your money seeing him.
He diagnosed me with Hashimoto’s and then said never he could do or that any medication would not help.
It was this forum that suggested private bloods etc. I learnt more from this forum than him.
PM me if you want.
I’m even thinking of going private it’s been 7 years since my thyroid was removed and stuck on Levo and calcium tablets and still feel rubbish
You might want to get a print out of your results and post them here for suggestions before spending a lot of money.
Are they keeping an eye on your calcium and vit D levels? If not, I would get these tested in case you are on too much or not enough as this will make you feel awful either way. Were your parathyroids damaged in surgery and is this why you're on calcium? I've read this can be more difficult to get right than the thyroid.
You can pay for your own tests if they won't do them?
Also Vit B12, Vit D, Folate and ferritin/iron tests are useful
I did get some private testing done last year by medichecks and I have low ferritin and it’s dropped again since the test, my ent consultant and endo have been monitoring my thyroid and calcium levels though the calcium levels have fluctuated over the years and had to change dosage on many occasions. Endo thinks possibility of hypoparathyroidism and I also have a paralysed voice box on the left side. I do want to get my adrenal glands checked and also my inflammatory checkers.
Did they not check your pth levels to see whether hypoparthyroidism is a problem? This should have been done after surgery? and Vit D alongside is useful as linked with calcium absorption? Are you taking vit D - what is your Vit D level. Plus albumin levels are required to obtain adjusted calcium. Not much more I can suggest without test results though
This is a great site to learn everything you need about the parathyroids and calcium so might help you manage it a little better and understand more or work out what the problem is:
Thank you, I’ll take a look, to be honest I do not know if I had my pth levels checked. I’ve mentioned to the endo about calcium absorbtion but he’s not concerned it’s a problem my last blood test confirmed it was at 2.0 it’s been lower than that many times. I think also I need to get hold of my med records to look more at the blood results, I’ve had albumin checked before and been told it’s normal (hate that word) I’ll try and find my testing from medichecks for you to take a look at
What was the range of the pth test? In regards to albumin etc, It also needs to have been tests done at the same time as they only relate to each other if at the same time.
I don’t seem to have results for either my albumin was checked months ago so I’ll request to get them both checked again
Okay, yes the situation seems a little confused so I would get a bone profile test (which should include albumin) and pth test plus vit d and see exactly where you are and what happened to your parathyroids as doesn't sound like they believe they're functioning quite right and calcium can be awful if not at the right level so the more you know about it, the more you'll be able to help resolve it. They may even be giving you to much calcium for example etc???
Sorry for the confusion I am currently trying to get hold of my medical records for all of my blood results by the hospital and previous GP’s as I’ve never had copies of them to refer to. I’ll look in to getting a bone profile. Thank you for your help
Bone profile is just the name of the set of tests which include calcium and should have adjusted calcium taking into account albumin
I also had my thyroid removed in 2005 and it wasn’t until 2014 when I started to take T3 that I began to feel more normal. You need to get a full blood test done to check your levels. Fortunately here in Crete it is normal to check TSH, FT4, FT3 antibodies etc. and you can buy B12 injections over the counter. Because of UK folks buying T3 from Greece it is now in very short supply and my local pharmacy has to copy my prescription to order it at a cost of €1.30 pac. Previously you could buy it without showing your prescription and it was readily available. Very slowly GP ‘s and Endroconologists are beginning to recognize and accept that those of us without a thyroid need T3. This was why years ago when Armour, made from pigs thyroid was used it gave patients all the T’s. But I am afraid to say in UK you are in the hands of the pharmaceutical companies who have been charging the NHS somewhere in the region of £260 per packet of lioyhyronine, T3. It seems that the powers that be have not thought of sourcing this drug elsewhere or made it more acceptable to use the “old fashioned” Armour. Dr Andrew Toft said in Michael Moseley’s BBC programme “Trust Me I Am Doctor” that probably the majority of patients with thyroid issues need T3. I can only suggest you bombard your GP with information and get him up to speed with research and to look and listen to you and forget the ranges! The TSH test is irrelevant if you don’t have a thyroid.
I had my thyroid removed in 2011 due to cancer, worst thing ever. I’ve looked in to where I can source T3 but it’s getting my hands on it as my gp won’t prescribe it and neither will the endo. The cost here is outrageous and I’ve spoke to many drs who have said it’s blacklisted and it doesn’t follow the NICE guidelines. I think I do need to do what you suggested with the GP and get him up to date and get hold of all my blood results. I’m glad you can still get hold of T3 I looked at sourcing it from Germany. Do you feel better on it?
I totally agree and appreciate everything you say. My father and grandfather did better on Armour than the mucking around now. Then they didn't have blood tests thyroxine was prescribed after an observational stay in hospital. When my GP said Natural thyroid doesn't work well I nearly laughed. I saw it heal my father. Now its my turn and I am being cut off of Erfa soon cos the Govt don't like it!!!
Hi, I've lived near Lincoln for almost 15 years. I have not been able to find a decent endo. I've tried Lincoln, Hull and Nottingham. I also had the idea of paying to see some one. That did not work. A referral from your gp is still required. Not easy to get!! Then when I tried to find someone to see, I found that the only ones available within 250 miles were the same ones I could be referred to under the NHS so paying would be a complete waste of money. I was happy to travel but over 250 miles just is not feasible for me.
I was told that all the local endos had got together and decided on the same policy. That is that those already prescribed T3 would be allowed to continue with it, but no new patients would be prescribed T3. This meant for me, as I'd been prescribed it for the past ten years should have no problems. But no, the head endo here does not agree with T3 under any circumstances. His order was that my gp stop my prescriptions immediately. Thank God, I had a gp who saw that this was impossible - I'm on 60mcg a day and he continued to prescribe it. This was about five years ago at Nottingham. I was referred to a consultant at Hull about three years ago. I saw the same pig, I'd seen at Nottingham. He was even more rude to my husband and myself this time. Again, he wrote to my gp and told him to stop my T3. My previous gp had retired by then. I had a big argument with my new gp, which was very stressful. I was made to reduce T3. Even the very small reduction made me very ill. My lio was put back up. Then I was made to reduce Levo from 100mg to 75mg which also made me very ill. After five or six months my meds were put up to what they had been previously.
I then developed a problem with Pharma lio and was referred to Hull again. After waiting three months, I saw a student. There was not even an endo in the building! To be fair, she was very helpful but had to do everything through the same endo I'd seen before. He refused to help her. She did write to my gp telling him to prescribe American lio, which was what I wanted. I can only assume, she was brave enough and knowledgeable enough to stand up to her boss.
Good luck. I really hope you find someone to help.
My endo is in Nottingham I’ve seen two there and truthfully they haven’t helped I was away studying and got referred to a endo in Cumbria but I saw her once and had to request to see her again in the end I took time off uni and feel like I’ve not really achieved anything other than educating myself on my condition
And iam looking for someone private endo I live in Staffordshire .i feel like iam in a circle and so down scared that nothing will help me .iam suffering (iam on levothyroxine ) from big pains in muscles every where in body now for two months since I started this shit medication and my joints every single joint is cracking and so painful it has affected my life totally.I am 31 and before I started this medication I was completely fine -no muscle pains and joint pains I know my body .Endo says it is not Levothyroxine but I know it is
Get a copy of your blood test results and post them in a new post for suggestions - most of us have had to sort ourselves out as docs often not helpful. Start a new post and people will help you. Need vitamin levels tested also. It can take some time to feel well again as should be testing your levels every six weeks and increasing dose if necessary. Deficiencies will often become worse once medicating thyroid hence why essential you get Vit B12, Vit D, Folate and ferritin/iron checked. If you don't have results, you can ask for a print out from the docs receptionist
Hi I have no thyroid either it was removed 2 years ago. I was put on Levo for 8 months which didn't agree with me and left me feeling very ill I then I joined this site. I posted my blood test results and now self medicate and feel well again on NDT + T3.
First you need to post your blood test results get these done privately to save time and then post them on here with the ranges for people to comment.
I am lucky all of my parathyroids were saved by a very experienced surgeon who then replanted them in my arm and shoulder.
You will be able to get well this way, I did and I am 71 years old now.
Wow that’s amazing! I feel awful on T4 I’ve thought about self medicating but wouldn’t know where to start. I know my priority is to get hold of my blood results
Could you PM me also which one you suggest iam also willing to travel and to have private endo! This is just a huge circle and worry for all of us sadly
If only there were “thyroid” specialists !!!
Taking t4 only will not replace what your thyroid was making.
The moment that many of us stopped relying on doctors who just look at blood results and not the whole self is the start of our health improving.
T3 added to T4 or taking NDT will be the answer. Also nutrition - gluten free, dairy free.
Private endocrinologists follow the same rules, only difference is you will listen to their “t4 is fine” for longer and sit on a softer seat!
If you could travel to Solihull on Saturday to a thyroid support group you will hear how many people have gone from sleeping all day to be able to do cartwheels!
I feel so let down it’s degrading I’m currently trying to resume my studies at uni and I’m just so fatigued, yes I could travel I’m not familiar with Solihull so I would need directions I’d love to be able to do cartwheels again
Please message me your email address and I will send you the details later. If you could ask someone to bring you?
I have made a note of your email address so you can delete it above as this is public, for all to see.
I will email you later, sue