After immediate advice!

After immediate advice!

Hi. I have underactive thyroid and have done for some years now. I am also type 1 diabetic. I am on levothyroxine 200mcg and for years now I have been telling the doctors my symptoms have not only NOT gone away but got worse and no one seems to care. I am at my whits end and actually struggling with mental health issues because of it as I am so exhausted of being exhausted constantly. Iv had some dark thoughts due to this because there is no end. No light at the end of the tunnel! No good days, etc. Anyway I decided to up my game and started researching..

So due to my research it appears, I believe, that I am one of the patients who needs t3 medication. The generic t4 tablets iv been on for 8 years isn't doing it's job. I have also come to learn about hashimotos disease and it seems with all the symptoms of that I may also have that. Regardless... I have booked myself an appointment on Wednesday to see my to and I am looking for some advice...

Do i go in demanding more information on t3 tablets and what I can get prescribed to me instead of the crappy levothyroxine I'm already on

Or do i go in and demand to be referred??

I'm thinking the second option may give me more results as we all know doctors don't like being told what to do

Any advice will be greatful! New to this site so hope I posted this correctly 🙂🙂

UPDATE...

Went to doctors... Managed to get a referal however it's for my local hospital not Cardiff as I wanted. Said I'd have to go there before going to Cardiff hopsital. Got my blood results however nothing was tested other than my TSH level which is 6.41 mU/L

They are doing my bloods again and checking me for hashimotos disease as well as vit d and b12, even though I asked for it ALL to be done.

Doctor basically said all my symptoms I'm referring to are linked with diabetes so may just be that 😔

Seriously fed up ALL OVER AGAIN. Not taken seriously. Still feel horrendous, and now to wait for a letter for a referal to a specialist that's probably not going to give a dam either! I feel like crying! 😢😢😢

44 Replies
oldestnewest

If you have the results of your recent blood work (TSH, FT4, FT3, thyroid antibodies etc. plus any vitamins and minerals like iron, ferritin, folate, vitamins B12 and D), please post them, along with their reference ranges, as it will help members to comment.

If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your levo. etc. and that might allow members to make helpful observations or suggestions.

Adding T3 into the mix might be what you need eventually - but it's so much easier for members to comment if we know the things I mentioned above as a base for discussion.

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I had my bloods done last week so I can retrieve these tomorrow and post them 🙂

If i ask for a full list of results should they be able to give me all that you just mentioned??

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Yes - if they were tested but, depending on your levels, and where you live, it can vary enormously. tbh, as you're diabetic, I'd hope that they monitor you carefully enough to run these tests regularly.

Do you have online access to your health records? This can streamline the process of looking at your own blood test results. If you haven't registered for this with your practice, ask them about it.

If you haven't had some of these tests done, please make an appointment with your GP to request them (we'll know tomorrow when you post the results that you have). If your GP won't test them then members frequently order their own private tests from Medichecks or Blue Horizon.

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It differs from year to year tbh... sometimes they are really on top of keeping an eye on me and others I fall under the radar even when I am consistently contacting them 😔

Tbh, I didn't realise this could be done! I will most deffinately be speaking to them about it tomorrow!

Thank you!!!

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I have just contacted my doctors surgery to ask for my results and was told I had to make an appointment. I then questioned if I could access my results online and was told I couldnt. All she said was it said on my notes to make a routine appointment. She said for her to print it off It would need to be done by a doctor and that it would probably be Wednesday before than happened so Id be better off just sticking to my appointment. Bit annoyed to be honest... their my results so I should be able to access tjem when I like???

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Have they refused to let you register for online access?

Or is it that they need to you fill in a form and go along with some ID (e.g., driver's licence, recent utility bills, bank statements, passport) so that they can set this up for you? If so, can you collect together what you need so that you can get this authorised on Wednesday?

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They told me I could do the online thing which would take 2 weeks to set up but I still couldn't look at my results on there! I will sort it on wedn3sday when I am with the doctor and also go and see the receptionist in person tomoz to see if I have any joy. I just want to be able to go into the doctors appointment on Wednesday knowing what I want from it. I really can't be fobbed off again!

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Heya doctors today... if i ask for a full set of bloods to he done will he know what to check for?? Including antibodies etc?? Pretty sure they only test 4 parts of the thyroid levels when doing tests x

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Actually Sjellis, I wouldn't demand anything. It gets up their nose a bit! A polite assertive request would be more effective.

Most GPs don't know much, if anything, about T3. A few endos do and may cautiously introduce it if results warrant it. But they're being told not to prescribe it due to it's exorbitant cost and there's plans afoot to try and de-prescribe T3 altogether, so it's extremely difficult to get an endo to prescribe it now anyway.

But as already suggested, best place to start is by getting all your results, post them with reference ranges, and members will help with the way forward.

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I spend alot of time at my doctors and they know me well so if I ask I do usually get but more times than less I do demand out of frustration and that is the best way to get a response from them. I'm very much... ring up and they know it's me lol

So from what you just said I'm still thinking my best option is to go about getting referred to a specialist!

I do already see an endo, he is also my diabetes consultant but iv known him since I was a child and although very good he isn't the type to listen to much of what I say and want to change what I am already doing so Id like to see someone else (iv just gone onto pump therapy so all of my visits to him centre around that anyway)!

🙂

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If you email louise.roberts@thyroiduk.org she has a list of thyroid friendly endos, then you can ask on the forum for feedback on any you can get to. Most endos are diabetes specialists who know little to nothing about thyroid, so you need to see someone who has at least half a clue about thyroid!

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Great, thank you!! 🙂

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Louise has emailed me the list of nhs and private endos. There is one on the nhs list that isn't too far away from me. When asking for a referal from my gp can I actually ask to see this particular endo??

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First thing to do is ask on the forum for feedback from members, they will need to reply by private message. Just do a new thread, put the endo's name and area, ask for feedback.

If feedback is good, ask GP for a referral. Sometimes you only get to see a member of the team, if you specifically want to see the endo you may be able to ring his secretary and ask specifically to be put on his list to see only him. I don't actually know the protocol. Where I live is many miles from the main hospital, some clinics are held at our small community hospital and I see my lung consultant there, only he attends those clinics so I know I will see him and no-one else.

Someone else may have information on how to see the actual named consultant, ask in your new thread.

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Done. Thank you 🙂

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Definitely not "demand".... Just a reminder though, that within the NHS we have the right to request a referral to a specialist, but we do not have the right to demand that request be acquiesced to. The other issue is T3 - not every Endo is pro T3 and/or willing to prescribe it; plus T3 is included in the list of "Items which should not routinely be prescribed in primary care", about which, consultation has recently taken place; and indeed ahead of the consultation outcome, a number of CCGs have already instructed GPs to both stop newly prescribing it to patients, and withdraw it from those patients who are currently prescribed it. so there's no guarantee you will get it.

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I do demand and to be fair 8 usually get. My doctors know most of the time its the only way to get me off their case! Haha 😂

Right then, my best bet is getting a referal. It may not be that I need t3 but something needs to change. U can't live like this no more but I need someone to show an interest and believe what in saying 😔

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T3 isn't always the answer. It may be that you have a conversion problem i.e. Not converting the T4 you are taking to T3 which we need but that happens when D3 B12, folate and ferritin are optimal and for many of us it is't. Adding T3 may make you feel a little better but it's not addressing the problem. I was the same so I supplemented and still do and corrected the problem but it's not a quick fix, took me about 5 months but well worth the effort. The time depends on how low things are but just wanted to pint out patience is needed.

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I will put any time needed into sorting myself out. I'd go to the ends of the earth to not feel how I do everyday! It may not be t3 but I need a professional I can talk to who is going to help me. Someone who understands and wants to help!

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I'm in the US, so don't know if will be effective in the UK. Worth a try. Call your pharmacist & pharmacists in your area to get the name of a doctor who prescribes T3 through them.

I think the issue with GP's & endos being open to T3 is they don't know how dose it (or obviously the need for T3). Cookie cutter healthcare & we pay the price.

I politely begged my GP for months for T3. Promised if it didn't help or there were adverse effects, I wouldn't take any more. Was at the end of my rope at that point & decided if he wouldn't help, I'd buy T3 online.

BTW, I'm also T1 diabetic. Having these two autoimmune diseases is a heavy burden. Sorry.

Hope you locate a progressive doc.

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Thank you!!

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Aside from needing the blood test results you could consider swapping out some levotlyroxine with desiccated natural thyroid. Your Lerothyroxine dose seems excessive, have you considered poor digestion of the Levo? The blood tests are vital and worth getting T3 T4 ad TSH done monthly at about the same time of day.... Doctors use large Levo doses like a sledgehammer to crack a nut. I doubt your thyroid gland ever secreted that much T4!

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It's very frustrating... as you said... it's a high dose and I still feel dreadful every day 😣

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They tried to put me on 100mcg Levo and that was after 50 made me feel dreadful. Then i went on to desiccated at about 50-60 mcg T4 but the T3 thats in it makes up the difference and no side effects. However any more than that i started to have negative consequences of too much T3 and my TSH was still high and T4 still low, so I gradually added 50 mcg T4. Now I’m stable with both sources of thyroid replacement which is an equivalence to about 100-125mcg of Levothyroxine but with much less side effect and more energy etc. It also gives a close approximation to all the thyroid output of a healthy thyroid, which i also try to mimic by splitting all the doses into 3; midnight, 6am and midday. Works for me! Dont lose heart, you just need to find what works for you and make gradual changes, checking blood levels of all three every month. I also keep a symptom diary to be able to review potential cause and effect! Best of luck......

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That's a good idea! Never thought of doing that. I did buy a fitbit type thing to show the doctor how much I was sleeping throughout the day and night but he wasn't interested.

All of the stuff you have done... is this through contact with a reliable endo?

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I have seen 4 endo's, all dyed in the wool unhelpful and more willing to diagnose me neurotic and imagining it all than actually investigate why their precious Levo only treatment did not suit me. So I have been researching and learning as much as I can over the last three years. Now I have a pretty low opinion of endo's and GP's in this matter and keep daily records of dose, symptoms and monthly blood test results over 2-3 years so I do know more about my condition than any of them. I still go for consultations just to keep in the NHS loop, but it's a battle for proper recognition of me as an individual not one of their averages or a 'difficult' patient;)

One thing I forgot to mention that helped me increase my Levo dose was anti- histamines. I realised that almost all my so called Levo side-effects were exactly the same as those of histamine intolerance , hay fever, gastric discomfort, and cluster headaches etc. I took simple over the counter anti-histamines which helped , especially with sleeping if taken at night. I didn't want yet another medication habit so I reduced this gradually and went onto a low histamine diet or take a dietary enzyme supplement (DAO) which reduces histamine from food getting into the blood stream.

There is some evidence that high levels of thyroxine could interfere with the body's natural production of DAO! needless to say , the endo and the GP think i'm clutching at straws but it works for me especially when have been increasing my Levo dose.

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I'm stuck in a rut. I know there's other medication avaliable on prescription they just make more mo at off levo so don't like prescribing anything else. I read a study where levo is he 2nd most prescribed drug in the world so it makes sense

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Yup, I read something like that, apparently the margin per tablet is tiny but the volumes are massive so I suspect there is a conspiracy to stop any loss of volume sales by doctors prescribing alternatives like desiccated natural thyroid, the swine;)

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Hashihouseman How would that conspiracy be working, do you think? The only way that could be operating, as far as I could see, is if every Dr who prescribes Levo over T3, so that's every single Dr in the UK, is going to be on some sort of backhander from the makers of Levo - and as bad as things are, I cannot see that being the case. And it's counterintuitive - given the much much higher profit margins, why haven't they all suddenly swapped to T3 prescribing?

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not T3 which is a red-herring since it has very specific condition suitability beyond a small amount to mimic health, thyroid secretion profile (about 10% of the T 4 levels). I was thinking more of the failures in bringing desiccated natural thyroid to the prescription market with the huge licensing costs involved.

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I'm yet to meet a doctor who is even open to looking into prescribing something else other than levo. And I have seen a lot. Gps that is. I have had thyroid issues for 8 years and been made to feel there is NOTHING else avaliable to patients other than levo. And I honestly believed it 😔😔

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Hashihouseman ive just started doing this myself ...to get my t4 off the floor and in a good place on ndt my t3 goes over range .All the way up from a quarter grain to overmedication on ndt I haven't found my sweetspot although everything else is in place ..I think I definitely need to get my t4 up so as from 1 week ago I've added 25mg levo to 1.5 ndt and will do bloods on that before tweaking .

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Sounds familiar yes;)

Much as I’m suspicious of levothyroxine, ndt just has too much T3, it’s ok for pigs! My breakthrough came when I reduced ndt to 3/4 and then gradually fed the tsh clamour with levo in 25mcg steps 4 weeks apart. 75 was too much so I backed that off by half of a quarter grain! Amounts the doctors say have no significant effect, well they’re wrong!

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I am so new to all of this and petrified of doing it wrong and causing some serious trouble... this is why I'm seeking help from someone who specialises in thyroid... they may be useless but I simply don't feel confident going through all these changes by myself 😔

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I was the same, petrified, despairing, feeling so unwell and unheard, dismissed by the endo's. The specialists, however imperfect seemed to be the only lifeline but as it turned out becoming better informed and understanding how thyroid function occurs in our bodies gave me much more confidence than any endocrinologist, and blood tests T3 T4 and TSH! regularly to see how they change and learn how my body reacts to changing medications etc. there's loads of research if you have the time to google it and can gradually understand it. Otherwise find someone who can help you by working with you to find a suitable regime for you not just filling you up with more and more Levo ....

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Any higher a does it's going to start flooding from ever u oraphis lmao 😂

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You’ll be a walking thyroid fountain, the sick will make pilgrimages to sit at your feet and absorb it 😇

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As a general enquiry, is the timing of everything quite tricky when you have the combination of diabetes T1 + hypothyroidism?

I know that Clutter normally recommends that in general, for maximum absorption, Levothyroxine is taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen. Or is this less complicated than it used to be because you have an insulin pump?

I was wondering if you are taking a substantial dose but you've not had appropriate respite from your symptoms partly because of any absorption issues? But, it will be easier for members to comment when there are some blood test results to look at.

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I'm not going to get my results now until the doctors appointment ad they wudnt give them to me over the phone and I really wanted to be full of knowledge to share with them then. I just take them in the morning on empty stomach with no caffine. I do take the pill and vit d tablets which I used to take in th3 evening and not alongside my levo but it didn't make a blind bit of difference! It just seems no matter how much I tell the doctors my symptoms are worse, they just tell me to exercise... and when I tell them I physically can't because I'm that exhausted I feel well sick they just look at me like I'm crazy!

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You certainly seem to be getting nowhere at the moment and that must be frustrating. I think the best way forward is to get and post your latest bloods and also and comments the GP has made about them. It's often easier to see where things are going wrong when we have the fuller picture.

Levo is very cheap. It's the T3 that is excessively priced and so the NHS are stopping the sale of it but they should have stepped in when the price was increasing and demanded a reason for that!

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I found 250 Levo wasn't working for me. Seen consultant as feeling tired all the time. Checked my cortisol, fine apparently. Requested lio and was prescribed 20 lip, divided dose and 150 levo. Ok ish for couple of years. Went back as still exhaysted. Felt rubbish. Quite down. As a complete punt tested for coeliac. I guarantee I had no classic symptoms. Anyway 2 years ago i was diagnosed with coeliac disease. Where the heck did that come from? Much better now. I can actually think and retain information. Gluten free worked for me. Auto immune diseases seem to be linked and are rotten. Good luck x

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I was also checked for coeliac. Test wad negative thank god

I have also been told that gluten free is good and alot can be helped through diet. But how I am at the moment I feel u could eat like an absolute professional and I would still feel awful everyday 😔

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My mother and I are hypo. She has hashimotos. She was on T4[levothyroxine] and her symptoms remained though the TSH looked good. She and I are both now on nth and also small amt of T3. The more T3 used, the higher the demand for cortisol]. She has since brought her antibodies down from 282 to 15 and maintained that. I highly recommend researching the STTM website (Stop The Thyroid Madness) This is a journey and it can be overwhelming at times. Some basics ... get your iron levels optimal, support your adrenals as they are tied in to your thyroid function. I try to use natural methods. Know that your digestive system is compromised and try to help it. I like using bone broth. Research and research and research. Good luck.

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To people on the thread I have updated my post with what happened at the doctors today x

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