I have just been advised by a GP today that I can not be referred to a consultant as I am hypo and you only get referred if you are hyper, is this right? I have so many symptoms and fed up of all the different dosages they keep suggesting I just wanted to see someone who specialises in this field.
Thyroid referral: I have just been advised by a... - Thyroid UK
Thyroid referral
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Francisneat
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That is just plain wrong. I'm hypo and see a consultant. It's possible that s/he is saying you're not yet ill enough for a referral ... so do you have any recent blood tests to share?
And if you're desperate, you can always see a private endo - but be aware that many are diabetes specialists who know very little about thyroid, so I'd recommend you set up a new post asking for recommendations near you before you part with your cash. Good luck x
Thank you fuchsia-pink, I knew that could not be right, why do GP's give this advice it makes me so angry. I will call another Dr tomorrow and ask again.
My results have been up and down, recent one in June 20 though I know it's slightly high is TSH 3.1, T4 20, no T3 as that was the NHS test. Medichecks in May 20 TSH 3.8 / T3 3.62 / T4 16.7 - what is your T3 - should mine be higher?
The thing is I have had a TSH of 0.09 at one point which I know is supposed to be optimal but I remember I felt quite unwell at the time.
When I was hyper in Lincolnshire many moons ago only hypers got referred to an Endo.
You must realise that the endo is not obliged to see you and will refuse your referral if they think you care can be handled by the GP.
oh wow I never knew you thank you Lalatoot for your reply. I just find it frustrating that someone out there is so knowledgeable in this field and yet from my GP perspective they have just dished out the pills with no advice. I feel worse than I did a year ago when I got diagnosed and I can't go on, I have missed out at work and now family events, I have even missed a family funeral due to this.
I was like that for years. Only got sorted thanks to this site and taking the initiative.
What was your initiative if you don't mind me asking? I did take a first free call with a private endo, he said he could give NDT ago, I am willing to try, like everything just the crazy prices that I really can not afford.
Have you had antibodies tested? Knowing if you have hashis aka autoimmune thyroiditis is important as this will be a factor in interpreting your results longer term.
Are your vitamins over halfway through ranges. If not supplement with the ones you lack. Do not use a multivitamin.
If you can get gp to increase levo try to get your tsh down around 1 or lower. Take levo away from food and supplements. I split my levo dose as I couldn't tolerate it in 1 go.
Record all your blood results. I wouldn't pay for tests until your tsh was lower if the Gp is happy to test tsh and t4.
Once tsh is lower or ft4 at top of range get blood tests which include Ft3. By comparing ft4 and Ft3 once you are on an adequate dose of levo (indicated by low or suppressed tsh or ft4 at very top or over range) you can look at conversion.
If you can demonstrate a conversion problem having gone as far as you can with levo then you may get an appt with an endo and you can start to ask for combo treatment.
You are so knowledgeable 
Yes I have had antibodies tested it was back in Dec 19 - (241- <34) My vitamins are not that good, ferritin is below range at the moment and on ferrous gluconate, Vit D is low just taking bog standard tablets to get that back up.
What made you decide that you could not tolerate your levo in one go?
ok I will increase my levo I am on 75mcg, I am a bit scared of increasing daily as when I recently took 100mcg for 4 days my heart raced so much it was frightening.
Good advice I will certainly give it all a try.
I just felt ill with it. So never take more than 50mcg in a dose which is fine for me. Also if I do something that affects the absorbtion of one dose say eating to soon after, I haven't blighted my whole daily intake.
Don't increase by 25mcg if it affects you. Either alternate 100mcg one day and 75mcg next or cut tablets to give approx 88mcg per day. So an extra 12.5mcg to begin with.
I take my levo in 3 doses as I take t3 3 times a day, I just add my levo to it.
Read up on hashis if you don't know about it. You will need to learn about flares etc. I don't have hashis so am not an expert
Thank so much for everything tonight, honestly I have learnt something new It's just so nice sometimes to talk with someone who knows what is going on.
Take care x
You are most welcome.
Francisneat. I’ll assume that your ranges as they’re Medichecks
Ft4 16.7 (12-22) 47% through range
FT3 3.62 (3.1-6.8) 14% through range
So as you can see your very low in range for both. You need an increase in Levo to see if you can raise your FT4 and therefore your FT3.
I use this calculator as it helps to understand what optimal will look like.
If you are someone who needs T3 added then you’ll need a referral to an Endo. Not that it will make much difference as they don’t understand our condtion very well but it’s worth a try anyway. Otherwise as for a referral to a private Endo. In the meantime for Levo and supplement Vits till optimal.
Hi thank you so much for looking at my results, it certainly makes me view them differently and the calculator is very handy, I never knew this type of thing existed.
I will up the levo and vits then do another medicheck and see how things are after that. The battle shall commence.
😂 I’m laughing at my post as it looks like English isn’t my first language with all the grammatical errors 😬 in my defence I’m painting my sons room on one of the hottest days of the year and taking quick SM breaks to try and recover in between coats 😂
Ha your son is a luckily boy that he is getting his room painted, and I can't believe you are painting I am too hot to move.
I was dripping wet! Lol The fan was just blowing hot air on me. I’d put it off till today as I thought we were going to get a thunder storm to break up the heat! No such luck 😩
I used to paint and decorate for others both for free and for money at one point. I love painting. In the last 7 years, due to being ill, I've managed to get a coat of paint on the dining room walls and ceiling (at the start of the illness when I wasn't so bad) and last October I painted the pantry, little bigger than a cupboard but awkward because of all the shelves and electrical meters etc. For some reason I felt a bit better last October. Then Dad died and I was on a treadmill of doing everything for Mum and I've felt much worse this year. I miss being able to keep my house nice. Even clean is no longer possible. So little energy.
I just wanted to say I am very sorry to hear that your Dad passed. I am sure the upset and looking after your Mum has made your condition worse. I am in a similar situation and I totally sympathise x How about a cleaner, I don't really have the money but even I am thinking about it due to no energy. Is there anyone else that can help with your mum?
Thanks. I'm OK about him going, he had poor quality of life for the past 18 months and not that great for the preceding 5 years really, partly due to his own actions. But it resulted in a lot of work and then the virus hit and everything was either ten times harder or not possible. Now Mum want's major house repairs sorting. I've managed to get her gardens sorted for her, now the fence needs replacing, but the list is endless and me saying "I don't have any energy" doesn't seem to register. I also have a business to keep going. There's no one else to help with Mum. She's 85, no local relatives now and I'm an only child. It's hard.
I'd love a cleaner, but not currently possible because it's too messy and dirty. I'd be ashamed. And we don't want anyone in the house because of the virus. I've had cleaners before, when I was well. Kind of ironic that.
ha I know what you mean it's too messy, I think I would have to tidy and half clean myself before I let anyone in.
Your mum is a very lucky lady, maybe one day to one of the jobs say I just can not make it today due to not feeling well, and it may hit home a bit more. My mum also has a list its tough as a house will always needs things doing, I could have done so much during the lockdown but I have felt so horrible most of this year nothing has got done, and she has seemed to accept it.
I hope that you feel better, remember to look after yourself as well
I say I can't do things often. But the list stays. Now she's talking about an extension. That's not happening. The housing market is too up in the air at the moment to spend lots on a little house in the wrong place. We can't afford to make bad investments. Some things need doing, but they haven't been done for 62 years so it will have to be done when I can. It's a 50 mile round trip too, so not quick. When I get there there's always a list for immediate things too, fix this, change that, find x. It's exhausting to someone with a T3 just 15% into the reference range at my last test and menopausal too.
Then there's sorting out a headstone for Dad's grave, and we need to change some of her money accounts and she's still sheltering. I just can't cope with it sometimes. If I say I don't want to talk or chat or do things I just get it all in emails!
Oh well. I'm sorry you feel the same. This thyroid stuff is rubbish.
My heart goes out to you honestly. It is so tough with this condition, it's not like a broken arm where it's so obvious to people that you can't help. I wish I could magic up someone to help you, or if your mum could get an odd job man but that is probably not a good idea in this current situation but maybe for sometime in the future.
By sound of it you are coping so well, one thing at a time that's all we can do. I do agree this thyroid life is certainly a challenging one.
x
You will be lucky if you get to see anyone myself and daughter were switched to Teva new formulation in 2018 heart racing hair loss the side effects to many to mention only got to see cardiologist after I had heart attack kept telling all the doctors in my practice I wasn’t right.couldnt get antibody test done told to go private one doctor told us to go to a lawyer that it’s the government to blame wrote to the MHRA they said i should be back to normal in five to six weeks took the letter to my doctor he said they are passing the buck that says it all there is something going on with our medication could be to do with this Brexit .
Hi Buzcat I can not believe your story this saddens me so much :(. and a heart attack that is awful, how are you doing now? I was on Teva as well and kept getting really bad pain behind the eyes so refused to take it from the pharmacy.
I had a major nose bleed on Teva for a few days. I felt terrible on it and one morning I was washing and my nose started to pour. I couldn't stop it. There was blood everywhere. I was naked and freezing and terrified. My husband gets nosebleeds (I never have and don't again now) so he was reassuring and passing me the kitchen roll and trying to mop me up etc. Eventually it slowed and stopped after an hour. We called the surgery and they checked me out and declared me fine. It couldn't possibly be the Teva.
It was. I know it was. I now have it marked on my pharmacy records not to dispense it for me. I submitted a yellow card.
Hi, if you haven't already got it, 'Why do I still have thyroid symptoms' by Datis Kharrazian is worth reading. Lots about Hashi's but also plenty of information on other things that may be affecting thyroid function and what you can do about them. Have you already tried an autoimmune diet? Not all agree that it helps but many of us find it makes a huge difference.
I also agree that getting vitamins and minerals optimal is really important, but you may find that you currently have absorption issues and need to sort the diet before you will be able to absorb. Do you already have any other (particularly autoimmune) conditions, and do they run in your family - that way you may be able to be forewarned about your likely weaknesses (doesn't mean that you will get the same ones, but does make you prone to getting more, which is why concentrating on the fact that you have an AI process going on is important, alongside getting your thyroid functioning better). Best wishes
Hi bookish, no I don't have this book but I will certainly have a look at it thank you. I am up for trying anything that helps, the autoimmune diet can I just look this up on google? have you tried it?
My dad acquired rheumatoid arthritis when he was in his 40's, so I guess there could be a link there.
Hi. Yes, RA is AI and very closely linked to thyroiditis.
I first found out that some (not all) functional practitioners think that diet (especially gluten) is very relevant to autoimmunity when I watched a series by Tom O'Bryan, (of 'The Autoimmune Fix' - also an interesting read although I now think Datis is better) a few years ago now. I already had an AI (although it hadn't been diagnosed) and had already cut out gluten and dairy because I had reflux which wouldn't go away and I had heard that it might help (which it did). It became clear to me from my other reactions that I shouldn't have been eating those at all (ever!), so I was perhaps a little more inclined to believe it when people suggested that diet could be affecting more than we were aware of. I had had no idea that symptoms I had had since childhood were food intolerance linked and sadly no-one had ever suggested it. Some people get very sniffy about even trying to change diet, which is entirely their decision, and Tom O'Bryan gets quite a lot of flack. Personally, I was glad to know that some people considered there were alternatives and was ok, after plenty of reading and some testing and some appointments, to give it a try to see if I could make myself feel slightly less appalling. There are a lot of practitioners out there and of course there is a lot of rubbish. I use Mick Rose's site a lot and find her very helpful purehealthclinic.co.uk/.
Anyway, yes, you can google it - they vary slightly but not a lot. And yes, I'm still on it, a modified version as I have reintroduced some foods. It has helped a lot, as part of the overall 'strategy' - lots of calming, relaxing stuff (meditation, EFT/tapping, yoga, vagus nerve exercises, hugging trees...whatever works for you!), vitamins and minerals especially Vit D and magnesium, I use adrenal and thyroid glandulars as can't tolerate anything else. Have a look at drknews.com/autoimmune-gut-... if you want to read a bit more. Best of luck
I can not thank you enough for this wealth of information :)!! I am going to look at it all. It's funny I have never thought about diet, I was tested for celiac and that came back ok. I eat a lot of diary which I know is not good in itself.
Are you on Levo? and doing well on it?
You could try another GP perhaps? I am quietly confident that it’s a case of trying to make us feel the GP is an expert, either that or you need to have autoimmune thyroiditis, have only a few of the most obvious symptoms and ideally have recently been diagnosed but visited regularly with problems. I know that is the case for several people near me. I also see people who complain they were diagnosed a year before referral. Many seem to be on low doses as well eg 50-100mg daily. What’s that all about.
My thyroid was destroyed in the early 1950s by radiation therapy for a birth mark, the doctors suspected damage to the hypothymus and the pituitary could also have happened. I was treated with and fairly well on nhs prescribed ndt for years. Changed to levo and told “it’s the same just a new name “. Clearly I would believe the. as neither of my degrees are in medicine.
Consistently refused a referral, the last one said he “could not do my health any harm” and diagnosed my swollen tongue, which was so bad I could only take liquid through a straw, no solid food at all as “anxiety”. Obviously every other symptom like missing eyebrows, nails, think skin, weight etc were not worth putting in the mix. Nor was the scan showing my shrivelled up thyroid, the smallest most destroyed ever seen by the consultant who checked it out. And as for private blood tests showing I simply do not covert well someone had been lying to me I did not need any T3 in my body. If I had a thyroid problem which he doubted ( so many GPs had been wrong for six decades ) then it was very minor. After all I was on only 400mg of levo.
At that point I started back on NDT and am well again, I believe at 69 after a lifetime if needing treatment and begging for help I deserved one visit but no. A man of about thirty decided I was never to be helped, he also decided I needed the smallest possible dose of D3 as my blood test returned a result of 23. I instantly took control myself.
I also live in the county with the greatest number of people prescribed T3 with an Endo on Thyroid UK list. It is just ridiculous GPs who decide if I am worth any quality of life and have long since decided NO.
Good luck to you
Hello Miffie, why is it that everyone has been through the mill with this condition fighting for a little bit of care as you say one doctors simple no can change someone's life. I did think that I would speak to another GP, with all the advice on here I think I will up the levo+vits then try again, if I have go through each dr at the surgery then I will.
I can not believe they changed your med to levo how dare they when you were doing well on it, all down to cost no doubt.
I have not read up on NDT but I am very interested to think maybe if levo is not for me there is something else out there, do you think its better than levo?
Hi there, thanks for your kind words. Looking at your profile you have supplied no info at all about your diagnosis nor any test results.
You should post more info about your thyroid story including when you were diagnosed , current dose and problems and full blood test results so you can have some help.
Your reply suggests to me you are newly diagnosed, in that case I cannot understand why you need a referral. Happy to accept I have misunderstood and sorry idpf lik3 me you have had decades of poor care.
Hopefully the nextGP you see will explain the situation to you in more detail. Take care.
Yes I have not really posted on here much on my story and you're right I should do.
It's been a year now I have been on levo and I thought when all this began I would be all good within a few months how little did I know. My recent results in May 20 TSH 3.8 / T3 3.62 / T4 16.7 which I know are not optimal, my results have been in range and out of range and different dosages, I am currently on 75mcg.
I am just unhappy feeling dizzy, palpitations, shaky, get these everyday at random moments in the day and thought it would be nice to have a proper conversation with someone who has studied this field. Every GP has just looked at the numbers and gone you need more or less but it gets to a point where if my numbers are good and they have been at one point and I still feel unwell that an alternative has to suggested.
I was intrigued when you said you felt better on NDT.
Sorry your results mean nothing without the ranges, this varies from lab to lab. TSH is the same across th3 board. Your is still a little high as the aim is to bring it down to 1.00 when medicated. As I grave always had a problem with low TSH due to the radiation I am not very knowledgeable about the subject for those with Hashi / autoimmune thyroiditis. Amazing your GP is able to get a T3 test done. In my part of the country the lab refuses unless both TSH and T4 are seriously out of range. It may be your results suggest no conversion issues. Are you nutrients all optimal?
I see a number of people who feel cheated by GPs due to Hypothyroidism, I must admit I have never experienced any palpitations, I have certainly known being dizzy and fainting every coupl e of weeks as a teenager. All part of a low blood pressure and horrid menstruation. Carried out of school classrooms on a regular basis. I do understand your frustration. I have been really well for a total of three years out of my entire life. Only once did a doctor tell me I was still at the bottom end of the scale and increase my dose. Goodness that wa a revelation, I had never known such a joy and pain free time. No struggling through every day it was fabulous. It really showed me how easy life can be. Sadly that was during an overseas posting with my husband and ended on out return to the UK. It is that that helps me to understand how difficult it is for those with Hashi find out and lose the joy of life they have known for many years. I know it’s worse for people in this category than me as I have been told by many like yourself You do have my sympathy. It’s been a year now so you must be so sad and struggling more than I can ever imagine. Certainly 75mcg a day is a very low dose, plenty orf room for an increase . I was on was on 400mcg a day prior to self medicating, My previous ten years of 500mcg a day concerned a GP. As it turned out my lack of conversion meant little difference in test results.
I do have one little bit of what I hope will be good news for you. Hypothyroidism causes an earlier menopause. By your mid forties I expect the whole business will be behind you and no more concerns over the problems of period irregularity which comes with hypo. I was post menopause at 42. Every cloud has a silver lining.
Good luck with the next GP hopefully in another year youwill be feeling much better. Take care
Thanks very much Miffie. I am happy to hear you are doing well, even though you have been through the mill yourself I appreciate your advice it means a lot. The joy of life has certainly gone at present, I am 44 so I await the early menopause as I do have all those horrible problems over period as well.
But you're right I will increase my levo. When I first started the Dr called and confirmed I have hypothyroidism and said he will put me on 100mcg and in 6-8wks we will test you and you will feel better again very soon. After 8 wks my TSH was 0.05, so after the test the Dr called again and said we need to drop your dose urgently, they dropped to 50mcg, anyway the short of it, I have been up and down with dosage and I have lost a bit of faith.
Hi Francisneat,
No, it's most definitely, not correct.
Please excuse me for being blunt, but you need to find a new Doctor, if possible.
There is a list that you can ask for, if you just want to pay privately, and find an Endo yourself...go above his head this way.
If you want, PM me, and I will send you the email address, to request the list of private Endocrinologist's
hi Shield-Maiden, glad you said that, this makes me feel better. I would love the list of private endo's I will PM you. Sometimes you know in your heart that something needs to change and when a doctor does not really listen and just up and downs your dose all the time it gets tiring.
Yes,
Also, if you have a crappy doctor, who is poor at their job, then their lack of knowledge can make you ill; this happened to a dear friend if mine (she didn't want to make a fuss, stayed as his patient, and her heart is now damaged, fir life, and, she almost died, and, she had a stroke....he didn't treat her, when he should have). I will send you the link.
♡☆♡☆
oh my gosh that is terrible your poor friend, my blood is boiling just reading that. I so hope that she is doing better. I used to respect Dr's but so many things lately have made me lose complete confidence in their advice.
x
I actually found a section on Nice guidelines that basically says if you have adequate or escalating LT4 but persistently raised TSH and underlying causes excluded or managed. OR adequate or escalating LT4 and symptoms persist and alternative causes excluded or combo therapy and switch to LT4 is being considered .. then consider referral to an Endo. So quote that back to them
cks.nice.org.uk/topics/hypo...
That is great! thank you so much jsy_girl. this is all ammo that can really help. I will check out the guidance.
You’re very welcome.
It’s actually perfect because I’m trying to help my mum too who has low B12 and symptoms plus a conversion problem (which could be b12 related) and they seem to be denying her b12 level is a problem.
So my basic response is, well which is it? Either her b12 is fine, in which case you should refer based on persistent symptoms or her b12 is not fine... and then we’ll see what happens to her conversion.
Can’t have it both ways doc 
I hope your mum gets what she needs from the Dr's, thanks to your research!
Thanks it’s a constant battle though isn’t it. I have the same thyroid problem as her so because I learned all about it, I’m trying to help her too!
She is lucky to have someone so close to discuss things and help. but not lucky of course to have it obvs :(. Everyone I know has had it for years and has no symptoms and just takes the pill and feels like normal, so they just don't get me with all my issues.
Oh really! If only we could be those people. I suspect they just don’t realise. When you’ve had it for like 20 years you forget what normal is!
Too right! mind you I don't even know what normal is nowadays lol
My point exactly. You just get used to the way you feel after a time
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