Just a follow up. Thanks for all the information. Feel I have had no joy trying to convince doc. my problems are thyroid based up to now. If i hit a wall again, can anyone recommend an endo. to see privately who specialises in thyroid problems in the South Yorkshire area, or at least in the north. I cannot believe what a minefield this is or how little trustworthy help is available. I actually tried to go down this road a long time ago and was inspired by people recommending a Dr Skinner, but who has since died unfortunately, but he was acting outside GMC guidelines and got struck off anyway. By all accounts he had a lot of success with complicated cases, which upset the establishment. I don't suppose anyone else has taken on the mantle.
new - need help: Just a follow up. Thanks for all... - Thyroid UK
new - need help
Dr Skinner was not struck off by the GMC!! What a load of tosh.
I was a patient of his. He saved my life. He stood up to the nonsense of the TSH rules and was extremely knowledgeable, yes he challenged the GMC and the Endocrinology bodies who frankly are leaving paople to suffer with their nonsense of aTSH over 10 before you can treat & refusal to test the actual thyroid hormones ft4 & ft3 and refusal to take note of people symptoms and signs.
Please dont take his name in vain!! Dr Skinner deoserves far better.
If you want the names of thyroid friendly doctors I suggest you contact Thyroid Uk. However I must warn you these doctors are scarce these days due to the way doctors have been treated by the medical profession if they step over the TSH rule of ten over and treatment other than by the TSH. Many patients as a result have been forced into self treatment because of this nonsense. Good luck!
Sorry if I gave the wrong impression, or actually got the facts wrong. It was a long time ago. I was in full support of what Dr Skinner was doing. As I said, I was impressed by what I read and was thinking about contacting him. I was in a mess way back then. I so wish I had. He was a sad loss to the thyroid community. What I must have got wrong is that I thought Dr Skinner was struck off. I apologise for that. Mr Wheetman the top consultant in Sheffield at the time, I know disagreed with him, which obviously precluded Dr Skinner's ideas being implemented in our area, as our GP's followed Mr Wheetman's line . Well, mine did. I thought Mr Wheetman was involved in GMC at the time. I assume he will be long gone by now anyway, but by all accounts things haven't changed much on the thyroid front.
Thanks ShelWhitt. Im sorry for my somewhat terse & 'shouty' response! Not my usual style tbh......been a tough week but doesnt excuse it.
As you have seen you will get great help on here & Martz is right there are some truly experienced & knowledgeable people on here who give brilliant advice. So dont give up...... many of them have helped me on my way in recent years.
The people who worked with Dr Skinner are compiling his works. shaws may have more up to date information so I have tagged her.
There is a list of Thyroid friendly Endos at TUK - you could e-mail them for the info. From my reading here since 2011 you may be better to have all the tests done through Medichecks or Blue Horizon privately - report back here with results. There is a great depth of knowledge shared here and could save you lots of money initially. Tests required - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg. Also B12 - Folate - Ferritin - VitD. Medichecks have Special Offers on Thursdays which come up in your News Feed. Almost impossible to have all those tests done in the NHS - hence people receive other diagnoses and incorrect treatment - sigh !
Posting more than once so close together may become confusing !
Thank you Marz. I am trying to get to grips with all the info, but my head is not in a good place, so one step at a time. I really ought to have done this years ago. Apologise for posting twice. Don't really know why I did that.
No worries - easily done 🤔 One step at a time is good - so have you phoned surgery for your results ? You will feel so much better when you are taking control . You have made a great start asking for help here ...
When I have a copy of results I write on them - Current dose - Supplements and most importantly how I feel.
If you want to know more about anyone replying to you - click onto their username above and all will be revealed 🌻
Thanks again. Seeing doc on Friday and hopefully will sort out results then. Busy this morning sorting out prescriptions, OH and his issues and appointments. Just wish I could get my head in gear, if I could think straight life would be so much easier. Maybe when I get chance I will click onto the usernames, there is such a helpful group on here.
It might be something as simple as LOW in range B12 or VitD. If you look at the PAS Forum here on HU (when you have a mo') you will read about the suffering caused by B12 Deficiency. Again Docs say you are fine if you are JUST in range - it is where you are in the range that is key to your wellbeing.
Many symptoms of LOW B12 and low thyroid do overlap. Take it slowly ...
I hear you Marz. I am taking extra VitD. But told B12 OK. Will try to get details of ranges.Thanks again.
How much VitD are you taking ? OK means in range but it is where you are in the range that matters. B12 good over 500 ...
Hi Marz. Just to keep you in the picture, been to see doc this morning. Told thyroid tests are OK. Not changed levothyroxine dosage. Had quite a discussion Asked if they could do more extensive tests. Not just on thyroid but on other things as I feel so unwell feel something is not being picked up. She suggested I go privately to see endocrinologist so that I am going to do. Couldn't see any other alternative to be honest. Asked about access on line to medical notes. Said I had to put in written request. Have done that. Am already on line for prescriptions and appointments but can't see a facility for accessing medical records. Had a further discussion with admin staff and they don't seem to know how to make access to records available to me. Waiting for a phone call back. In the meantime have asked for 2 years records to be printed off. This they have agreed to but they don't know how long this will take as they are short of staff. And so it goes on. Oh I am taking calcium 800mg and vit d 5ug daily.
Please have all the tests I suggested above before seeing an Endo privately. As I have said previously it could be something as simple as Low B12 or VitD and of course LOW T3.. Believe me we see it every day here. So have you looked up the Private Testing companies on Thyroid UK website ?
If you see an Endo privately you will need to have tests done before seeing him/her. So we could help you with the results and give you plenty of ammunition for your GP and save you seeing an expensive Endo who may or may not be helpful.
As I have mentioned higher up in this thread - OK is not a result - just an opinion. What was tested ?
Hope you get your results soon. They should reveal a few mysteries. Please read through this thread again as I seem to be repeating myself ... 🤔
Am tagging greygoose as she may have some helpful advice or at least support what I am saying - in case you think I am a lone voice !!
Your VitD dose is VERY Low and not even a maintenance dose. Why are you taking calcium ? - was it tested before supplementing ? Your VitD dose should be based on your test result ...
The more info I get the more stressed I am getting. Starting to feel like a complete idiot because I have been taking the docs at face value, plus having memory and concentration issues not helping. Can't even remember now how much; was put on concentrated Vit d, I think for four weeks, initially, by doc, after a blood test, probably over a year ago now. Then doc told me to buy over the counter product to keep it topped up. I simply bought over the counter product, didn't check amount because I didn't know what would be relevant anyway. I did ask chemist if it was suitable for my purpose and he said yes. It also contained calcium. but I didn't question it. My thinking, misguidedly again, obviously, calcium would be good for my bones. I realise NOW I should have been checking everything out, but why would I, when I had never been told is was necessary. Have had several blood tests since then and was told all OK each time, did once query B12, but was told it was in normal range. As I don't know what that is, there was no reason to question it, or so I thought. Obviously wrong again. When/if I get my paper results, which seems slightly more likely than getting on line, I will run them by you, if that is OK , and I might be able to see things a bit clearer. Did ask if our health centre would do private blood tests, but no, so next job will be to check out private testing companies and hope they are local. Thanks for all your help, insight and advice. With luck I will get there eventually.
Am more than happy to help you with results. Dashing out for a check up with GP as I have been very unwell since 29th Dec with a coughing flu virus ... no sleep for three weeks. So weak .. sigh !
The more info I get the more stressed I am getting. Starting to feel like a complete idiot because I have been taking the docs at face value, plus having memory and concentration issues not helping.
Please don't feel like that. None of this is your fault. No-one is blaming you for not knowing. Doctors should be capable of taking you in hand and making you better. The sad truth is, they can't. They don't have the education to understand it all. What's more, they don't have the interest, because they were taught in med school that thyroid is no big deal and we're all making a fuss about nothing.
Having memory and concentration issues is all part of the disease. Write everything down. Never go anywhere without a little notebook and a pen - especially to the doctor's!
But, we all have to start learning somewhere. None of us were born with all this knowledge, we had to acquire it to save our lives.
Doctors know less about nutrients than they do about thyroid, so you're not going to get any good advice from them. In fact, best to ignore any advice they do give and research it for yourself - or ask on here. But it was Big Food that has brain-washed us into believing we need calcium for our bones. Bones are made of calcium, yes, but that doesn't mean we need to take loads of it, nor that it is the only thing necessary for strong bones. Doctors often prescribe the type of Vit D supplement you've been taking, and to be perfectly honest, pharmacists don't know anything about it, either! So, why would you? You mustn't beat yourself up for not knowing. But, now you're on the right track by coming on here. 
I agree with everything Marz says about getting tests. You'll find details of private testing companies here:
thyroiduk.org/tuk/testing/p...
They don't need to be near you, because you can do it by finger-prick at home, and send the blood off to them.
Sorry to be a pain. Have sourced Medichecks but still not sure which tests I should go for. Obviously got your list, but they are in groups and I am not sure which is which or whether I need to go for only one or several. Please advise. Thanks.
Have not used them myself as I have lived in Crete for 15 years until recently ! Ask in a new question here which package is best - think it's Thyroid 11 that includes a bit more like CRP and the Active B12 test. You do the test yourself at home and results sent to you by e-mail within days. Don't post on a Friday as samples will be hanging around !!
When I was diagnosed with Hashimotos back in 2005 I knew ABSOLUTELY NOTHING about the thyroid. I read and read and joined this Forum in 2011. I was living in Crete so mostly took care of myself. Don't forget to click onto my username and take a couple of minutes to read my Bio ... it has been quite a journey.
Hope you are OK this morning ... 🌻
Thanks for asking. Not good. Hope you are recovering from your infection and feeling better. I have still got head, neck, shoulder and back pain, left side. Feel sick and digestive system feeling dodgy. Consequently, I am not eating properly; and my appetite is rubbish. Also lower back pain and weakness in hips and thighs. Add in brain fog, tingling, didn't go to bed til midnight and been up, on sofa, since 5.30 with red hot water bottle on head and neck, and you get the picture. Head also buzzing. Now wondering/worrying if I am on the right track with thyroid, or if it could possibly be something else. Yesterday felt decisive and convinced I was, but feeling so ill again today, I honestly think I am dying. Of course I know doc would say it is fibromyalgia, and I would be back where I started. Sorry to be such a pain. I really do appreciate your spending so much time to help. I feel as though I am in a minefield. As you have such a comprehensive knowledge of thyroid problems, have you ever come across anyone with similar problems to me ? I did look at blood tests on Medicheck and thought Thyroid Check Ultra Vit Blood Test would be appropriate for me. What is your opinion. It tests Thyroglobulin Antibodies; Thyroid Peroxidase Antibodies; Ferritin; Free Thyroxine; Free T3; TSH; VitD; VitBit B12-Active; Folate - Serum and CRPHS. I do hope I haven't totally driven you to distraction with all this 'too much' information. Thanks again.
Good to hear from you. Sorry you had a bad night.
Try to imagine that every single cell in your body - trillions and trillions - has a receptor for T3. Brain cells have first call on T3 followed by the gut/immune system then heart and everything else ...
The Levo/T4 you are taking is INACTIVE and must convert into the ACTIVE T3 needed in every cell. Hence it is such an important test. If your FT3 result is low in range then you know there is not enough to reach and nourish all the cells. A bit like trying to spread a teaspoon of butter on a loaf of bread !!
The test bundle you have selected is great. Do ask on the Forum if you need advice with doing the test. Don't bother asking for Doctors comments as you can ask here when you post results in a new thread.
I understand you thinking it's not thyroid - so the testing will rule it out if that is the case. Do not take your Levo for 24 hours before the test - take it afterwards - and fast - only water.
When are you collecting your GP results ?
With over 100,000 members here I have read loads of posts with symptoms similar to yours ...
Thank you so much Marz. Don't know about GP's results, waiting for them to contact me - shortage of staff! Intend to try to get test sorted after weekend.
Your comment about Dr Skinner being struck off is very, very wrong and completely untrue. One also should never make False Statements that are based upon 'rumours'.
Dr Skinner was never 'struck off' at all, even though called before the GMC more than once. It was not his patients who complained - as they recovered on his commonsense diagnosis and prescribed whatever made the patient better so it must have been professionals surely.
What other doctor in the UK would have had 10,000 testimonials from his grateful patients whose 'lives he saved'. Their statements were sent to the GMC who bound these testimonials into red Ledgers and Dr S was always dismissed as he 'followed the procedure he was taught as a junior doctor'.
He was always found to be treating patients properly.
Whoever complained about the method Dr S used (it was how he was taught as a Junior Doctor before blood tests were invented - ) just like Dr Peatfield and others who were penalised so that other doctors woul 'toe the line'. They were taught to diagnose/treat patients without blood tests being necessary as they knew all clinical symptoms and patients were trialled on NDT as that was all that was avalable from 1892 up until levo took over and which doesn't relieve or restore health for many patients..
I feel that it is the Guidelines we come up against - made by the medical profession - that causes so many people to come onto this forum, to try to find their way out of their pitiful existance at present as there's certainly no where else to turn.
Dr Skinner prescribed what the patient needed - and this is one link:-
healthunlocked.com/thyroidu...
Since his demise his faithful staff have been collating all of the evidence Dr S and they experienced through the patients who visited his premises and who travelled the length and breadth of the country.
dailyrecord.co.uk/news/real...
Thank you for putting me right. I have apologised as I obviously did get it wrong. I don't actually know where I got it from, as I said, it was a long time ago. I don't usually make assumptions,. I do remember being incensed at the time that the establishment were being so closed minded, when he was so obviously doing good work.
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