The ability to reply to my last update post has been turned off. I'm not sure why? I'm hoping this is because of the request made at the bottom of that post and not because I've broken any other guidelines. Apologies if I have inadvertently done so. I'd still be interested in comments on the experience I had this morning, info on the drugs mentiuoned below if anyone has any, and any tips on ways in which I might be able to handle appointments with my GP more effectively in future.
Just back from GP appointment. Wanted to discuss my test results from GP testing and my own from MMH with a view to deciding on how to proceed with GP's knowledge and possible guidance.
Met with hostility for making the appointment - apparently the GP will decide if they need to see me. Its not my place to decide my blood tests need discussing.
GP not in the slightest interested in my throid tests. Just shrugged when I maentioned my results from MMH. Only interested in my raised HBa1c test result - up from a steady 53 for the past couple of years to 57. I think the rise is due to my ending my practice of starting every week with a 48 hour fast. Stopped because I learned that fasting inhibits the conversion of T4 to T3 - which I think, having considered my experience and the information kindly given by members of this community, is at least a possible cause source of my diabetes.
GP just stared at me blankly when I said I thought I needed T3 as a way of resolving my diabetes and cholestol issues. She said I needed an additional drug. She suggested a sodium-glucose cotransporter-2 (SGLT2) inhibitor of some brand or other. Then she ran through the possible side effects. Severe thrush, Fourniers gangrene - a kind of nectotising fasciitis - and some kind of ketosis that requires emergency treatment. I said , in surprise, that sounded horrible so no thank you. I'll try and find a supply of T3 and try that first and maybe we could redo my blood test for diabetes in another 3 months. She made it clear there'd be no chance they'll repeat my thyroid test for another year.
I'm flabberghasted - truly shocked and horrified that the NHS would prescibe such drugs - and yet refuse to prescribe a supplement that might resolve the fundamental cause of diabetes type 2 in thyroid patients. Seems very weird to me that they'd prefer to treat all the consequences of Diabetes than tackle the possible root cause.
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I agree with you that it is shocking that GPs as well as endocrinologists do not seem to grasp the concept, that a low T3 level can cause metabolic abnormalities such as insulin resistance and elevated glucose levels, as well as high cholesterol levels. In my view, this amounts to almost medical negligence, as why would you prescribe lots of different medications with all their respective side effects, when you could tackle the root problem with an increase in your essential medication?
I would also perhaps try to see a private endocrinologist that is more sympathetic to your needs and that might prescribe T3.
In the meantime, as your blood glucose is fairly high, you might actually need another medication to gain more control. I know, you would not be in this position if your thyroid had been treated correctly, but for the time being you need to take them, otherwise you can run the risk of further complications due to your elevated glucose levels. I have worked on SGLT-2 inhibitors and they are actually quite well tolerated and can assist with modest weight loss as well. Yes, there is a risk of UTI infections (as you excrete glucose through the urine), but if you drink plenty of fluids (especially water), this can be avoided. So I wouldn't discard them just yet.
Once you are on T3, you may be able to reduce your diabetes meds or perhaps even come off them, but it depends on how long your metabolism has been disturbed and disrupted by too little thyroid hormones.
Thank you Tina Maria for your reply. It was very helpful. I think it does amount to medical negligence - to withold a treatment and then push all kinds of other drugs on a person for the symptoms of the underlying untreated condition. Anyhow...
I declined the SGLT-2 as the GP emphasised the Fourniers gangrene - I'm not sure how many people would say sounds just the thing after such a warning. Any more information would be very helpful - you say you've worked with them? For now I'm going to try to break up some of my Metformin tablets and see if I can tolerate a small increase - better than nothing - as I've only been able to tolerate 500mg daily - and I'll go back to fasting while I find someone to help me. I know its not good for thyroid levels but its been good for keeping my HBa1c level steady.
I've been taking Levothyroxine for 35 years or thereabouts.
Just to give you some perspective on the Fournier's gangrene incidences. This has been a post-marketing finding of SGLT-2 inhibitors (so these were only evident after these drugs have come onto the market) and it is a very rare but serious complication.
However, to put some numbers on it, there have been 55 cases reported to the FDA between 2013 and 2019 and therefore this serious complication was mentioned on the label. Yes, it is serious, but I am not really sure why your GP saw the need to mention this, as it is still a rare incident. The use of SGLT-2 inhibitors increased from 0.2% of patients in 2013 to 9.4% of patients in 2019. In patients with heart failure, the use of SGLT-2 inhibitors increased from 0.3% to 18.3%. If we look at the US alone, there were 21 Mio type 2 diabetic people in 2019, so if 9.4% took SGLT-2 inhibitors, that is 8,84 million people. In people with heart failure, total patients in 2019 were 6,2 Mio Americans - if 18.3% of those were taking SGLT-2 inhibitors, that is another 1,13 Mio people on SGLT-2 inhibitors. And of course, there are millions more people world-wide taking these medications.
So if you think of all these millions of people taking SGLT-2 inhibitors, 55 cases of this rare complication is of course very serious for the people who get it, but the incidence is very, very low and the chance of actually getting it are really low.
And as I mentioned, if you practice good personal hygiene and drink plenty of water, the risk getting a UTI are fairly low. The chance of getting a UTI in the first few months of SGLT-2 treatment are around 8%, but this decreases with the duration of the treatment, when glucose concentrations decrease.
So I hope this has given you some perspective on the incidences mentioned, but of course you need to decide if this is something you want to take.
I’m puzzled as to why you think T3 will reduce your blood sugar readings. I have read research papers that show that having high T3 can cause high blood sugar . I have been on T3 only, 40 mcg for nearly a decade & I’m just moving now to T4 only hoping to reduce my blood sugar after being diagnosed with diabetes last year. I’ll try to find the research paper which made me realise that highish T3 might not be helping me.
I wouldn’t continue refusing treatment for your diabetes. The damage caused by it is considerable. I’ve spent the last year going frequently to my local hospital eye health department having tests & being prescribed drops to reduce eye pressure . It was a local optician who thought I had diabetic retinopathy who diagnosed my diabetes. I was technically still prediabetic then but damage was being done to my eyes already.
Your fasting habit should according to the experts have “cured” your diabetes but I found that 5 months of keto raised my Hb1Ac five points & when I returned to a more normal way of eating, but still being careful, it rose another 10 points.
Hypothyroidism predisposes us to diabetes. Diabetes is such a damaging condition that I would not risk relying on T3 to normalise blood sugar, it just won’t work. Cholesterol levels do respond but I’ve never seen evidence of an beneficial effect on blood sugar. T3 might make it worse as it probably has for me.
I found Metformin really difficult to take, seriously upset my stomach. 1 brand I tolerated better but I could never find it again despite searching everywhere.
I now take Sitagliptin which has been fine. I’ve been at least 3 different manufacturers tablets & not suffered any side effects. I would really recommend it instead of Metformin.
I’m amazed you can tolerate the side effects of having high blood sugar, I found it awful peeing so frequently. Have you tried taking Berberine? It was effective for me for years until I did the Keto diet, which was a disaster for me & pushed me into full diabetes. I’ll post the research paper which ties high T3 levels to high blood sugar if I can track it down.
The problem is, that T3 seems to work well in a certain 'therapeutic' window, where it will show beneficial effects. High T3 levels as well as low T3 levels are associated with disturbances in glucose homeostasis - so high intakes/levels of T3 can be detrimental as well as too low levels of T3. As with all hormones, there is a fine balance that needs to be found. In addition, if your glucose levels have been imbalanced for a long period of time, it can be difficult, if not impossible, to reverse this. And this is why it is so important to treat hypothyroidism (as well as hyperthyroidism) optimal in the first place, given the consequences it can lead to.
I have attached a few publications on that subject.
Thank you for your reply. Much information in the publications. It’s obviously a very complex problem. I might keep a low dose of T3 in my regime after all having read through the articles but I think moving away from being on T3 only is worth trying for me now.
It’s personally infuriating when much publicised low carb diets make the situation worse instead of better as happened to me but it’s probably the hypothyroidism skewing the results. It certainly makes everything less straightforward.
Yes, T3 and glucose is a finely balanced situation, but that can be applied to almost anything - too much of something has effects as well as too little of something. The trick is finding the window where you will get the benefits without going to far the other way.
I am not a fan of low carb or keto diets, or of any very restrictive diets for that matter, as again you imbalance a natural and varied diet and in the long term this can have severe consequences, and it will not necessarily address the root cause of it all.
Of course, if you have intolerances or are allergic to certain things, this is a different kettle of fish, but in general the more varied your diet is, the more balanced it will be, as you consume not too much of one thing or avoid other important items. And it has also shown that restrictive diets can have a detrimental impact on your mental health, as you can get overly worried or even obsessed with eating or not eating certain foods, and perhaps feel guilty, if you find it difficult to adhere to your set plan. So not good in the long term.
The keto diet was stipulated by Sarah Myhill who I waited months for an appointment with. I wouldn’t have tried it otherwise as being gluten & dairy free already I found eating very difficult. Eventually I became sensitive to the foods I could eat, eg linseed bread so had to stop & widen my diet. Unfortunately that’s when the Hb1Ac shot up 15 points. Extraordinary.
This is certainly true of me - the effect of all this has had a detrimental effect on my emotional wellbeing - my attitude to food and my body. Hence being here and trying to get to a better place.
Hi there Bertwills. Thank you for your reply. I wasn't thinking that T3 would directly lower my HBa1c readings - rather that it might help with my slow metabolism - possibly helping to reduce my weight and thereby help with my diabetic control. I've been on a pretty strict low carb regime - not keto - with 48 hour strict water only fasts at the start of every week and have lost only a couple of kilos despite this diet and a lot of weekly walking - 4/5 miles brisk walking 4 times a week + indoor working out.
I haven't refused treatment for my diabetes. I take 500 mg of Metformin daily. My recommended dose is double that but I can't tolerate it and live a life outside the confines of my house. Hence the GP suggestion to use the other drug. I've decided to spend the money and see a private specialist and be advised by them. This GP is newly qualified and I don't trust her judgement or like her infantilising attitude.
I'd be interested to read the research papers you mentioned if you can find them. Cheers.
Hello, I’ve failed to find the research unfortunately. Google has changed & isn’t bringing it up. My posts about it seem to have disappeared too 😕. I’ll keep looking as I’m basing my change from T3 to mostly T4 on the basis of it.
Tina-Maria’s linked articles show how complex the situation is. I found that the low carb did me no good at all, I wish it was that simple. I leave 14 hours between supper & breakfast but I might be waking with hypoglycaemia at 3 am so that might not help either!
Good luck with finding your way through, I hope a private appointment will prove helpful.
Absolutely agree with everything you say - we only resort to Google if we’re lacking confidence in how we’re being treated and/or trying to help ourselves get better (which would make their lives easier)…
I can’t agree more, am getting the same type of attitude too.
Just to add, I just used Medichecks & found it hard to fill the container. I didn’t get a folate result. I also failed to realise that all the local village post offices in my area collect post at 9am - which delayed it further!
So I think I’ll get my blood drawn at a clinic next time.
It is fiddly isnt it? I take blood thinners and ended up with blood in the tube, outside the tube, on the holder for the tube, on the slip I was supposed to post in with it, on the envelope I was supposed to post it in...lol. Agree a clinic is probably a better option. Good luck.
Thanks kerry 124 for your reply - and the fellow feeling. Reassuring to know I'm not the only one. Sometimes I end up feeling it must be my fault if things go awry in an appointment. Unfortunately I'm registered with the only practice in my area -and the surgery is definately the worst I have ever encountered. This is an economically deprived area and I think its generated a very lofty and authoritarian attitude in the GPs that work at the practice. I've tried to move but GPs within distance are unwilling to take on people outside their area.
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A talk with my GP
Got T3 from GP 😃
Update on “Must my NHS GP prescribe Levothyroxine?”
What to tell GP about taking T3? 
