Dr freaking out due to High T3 & blood sugar! - Thyroid UK

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Dr freaking out due to High T3 & blood sugar!

Ebs73 profile image
33 Replies

Hi, just got back from gp and she says although I have no ketones in my blood I have very high blood sugar!? Finger prick test today was 16. She says she wants me on metformin and that I have to go to hospital! She wants me to stop taking T3 as well as I am on a high dose as I'm thyroid hormone resistant. I've been feeling really good but she says that doesn't matter and she wants me to go to hospital although I know they won't let me take my T3! In my 20's I had high blood sugar and was told I was pretty diabetic I went on metformin and didn't like it at all eventually I came off it and reversed it with a low carb diet. I said I would like to try low carb again as I've been eating all sorts recently and she has said absolutely not! I really don't want to go to hospital and feel as if they will endanger my life by stopping g my T3. Are those of you doing high dose T3 ok? Have you been in good health in general?

Thanks.

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Ebs73
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33 Replies
greygoose profile image
greygoose

What does she want you to go to hospital for? How is that going to help?

If I were you, I'd ask for a second opinion.

What do you call a high dose of T3?

Ebs73 profile image
Ebs73 in reply togreygoose

Hi there, she says my blood sugar is dangerously high! And wants me to go

shaws profile image
shawsAdministrator in reply toEbs73

You need treatment for your blood sugar so that's all they should deal with.

You are happy and content on your own method of treating hypothyroidism.

Ebs73 profile image
Ebs73 in reply togreygoose

Oops wants me to go for that. The T3 she wants me to stop and likend me to an alcoholic or drug addict! In a year and a bit I've tentatively raised to 400mcg as I did not do well on ndt.

greygoose profile image
greygoose in reply toEbs73

So, she wants you to see an endo at the hospital for your blood sugar. Fair enough, Endos seem to be pretty good at that sort of thing, and have more experience with diabetes than GPs.

But she obviously knows nothing about thyroid - none of them do! She should not have said that about being an addict. That is totally out of line! However, that is a very high dose, and I don't suppose she has any experience of people on high doses like that. However, it's your blood test results that count, not how much you're taking. You really must get hold of a copy to see what she's going on about. Not much more can be said until we see those. FYI, my highest dose was 225. But I needed it that high at that time. I'm now taking 81.25. It's what I need at this moment. We're all different and we all need what we need. And judging people by the size of their dose is just not helpful. :)

shaws profile image
shawsAdministrator in reply toEbs73

They have an Alchoholics Anonymous so we will have to start up a Liothyronine (T3) Anonymous and will have millions of members within about a week. :)

BrynGlas profile image
BrynGlas in reply toEbs73

My GP told me in 2020 when I asked for his help to trial T3 that the words T3 'Tee 3' were never to be spoken to him again as it is an illegal drug.

Another member on here was telling us all yesterday that T3 is a stimulent. I know it isn't and I don't want to come off it and go to what else?

My old GP would be delighted to know now that my Blood sugar is going up crazily. And would tell me that it was my own fault for using the illegal drug.

I am desperate to get mine sorted out very quickly because I don't know what to do next. I was only aware of this on Wednesday last week. Since then I have been trying to beard the dragon, but I don't seem to be getting anywhere. Thank God for my Blood Glucose meter, or I would never have known. I bought it for my partner because I was worried that he was Type 2!!

I was so happy on T3, felt so much better, but now I am sure I am going to get a lecture and they will want me back on Levo, and possibly Metformin which I don't want to take at all.

My biggest problem is trying to lose weight. Even on T3 - Tiromel, 4 x 25mcg I struggle to lose weight. But since starting another low carb diet after Christmas I was beginning to lose. I do have the abdominal weight that won't move.

Now I have no idea what to do. My FBS was 8.3 this morning. Highest yet.

Silver_Fairy profile image
Silver_Fairy

Please post the blood results that have scared her so?

Ebs73 profile image
Ebs73 in reply toSilver_Fairy

Hi, I will post them when I actually get a copy! I was so freaked out when she told me I needed to go to hospital that the last thing I was going to request was a copy of my results 😯 I told her I've improved so much since taking T3 that I really don't want to stop, apart from saying that's because it's like drugs and alcohol she also told me that I could die from thyroid cancer and heart attack! I researched heavily before I changed from ndt to T3 and now I'm being told this, it goes against everything I've learnt about it!

Clutter profile image
Clutter in reply toEbs73

Ebs73,

Taking T3 does not cause thyroid cancer. Having high FT3 long term does increase the risks of developing atrial fibrillation and osteoporosis though.

Levothyroxine and Liothyronine can increase blood sugar levels and change glucose tolerance.

google.co.uk/search?q=Lioth...

Hillwoman profile image
Hillwoman in reply toClutter

Clutter,

Ref. the work of Dr John Lowe et al, taking a high dose of liothyronine long term in a case of thyroid hormone resistance (which the OP states she has) will not cause an increased risk of AF or osteoporosis.

Clutter profile image
Clutter in reply toHillwoman

Hillwoman,

Long term high FT3 increases the risks of AF and osteoporosis. I didn't comment on the dose.

Hillwoman profile image
Hillwoman in reply toClutter

I can't follow your logic, I'm afraid.

shaws , do you have the relevant links to Dr Lowe's archived site for the poster's information? The ones I have don't seem to be working.

shaws profile image
shawsAdministrator in reply toHillwoman

web.archive.org/web/2010081...

web.archive.org/web/2010103...

Other topics are at the top of the page.

Hillwoman profile image
Hillwoman in reply toshaws

Thanks very much.

shaws profile image
shawsAdministrator in reply toHillwoman

web.archive.org/web/2010103...

Hillwoman profile image
Hillwoman in reply toshaws

Thanks again.

Hillwoman profile image
Hillwoman

Run for the hills...and see if there's a less ignorant GP hiding out there! Seriously, I would consider making a complaint about the 'addict' accusation. We're hearing this more and more, and it is absolutely incorrect and unacceptable.

I take a high dose of T3 for peripheral resistance and I've basically told the GP to keep out of it. The NHS damaged my health with levo for more than 20 years, and I have private supervision now. My health is still poor, because I have additional health problems which are not easy to treat.

I have high blood sugar - not as high as yours - which I treat with a ketogenic diet. Ketogenic diets for diabetes are backed up by plenty of sound evidence, but it hasn't been accepted by the mainstream (not lucrative; too low-intervention). I think you know how to manage your health problems, so I would just go back to what you were doing before, and keep carbs out of your diet.

Have a look at a recent book, 'Diabetes Unpacked', ed. Zoe Harcombe.

trelemorele profile image
trelemorele

You should definitely resolve high sugar levels. Why did you stop taking metformin?

With regards to t3 you should do what you believe is best for you. If you feel good and have no side effects from your dose - continue taking it. If you agree with and believe your doctor - stop it.

My own t3 levels are over the range - not planning to reduce my dose.

Ebs73 profile image
Ebs73 in reply totrelemorele

Hi, I stopped metformin in my 20's because it was not working and didn't agree with me. I've had good blood sugar levels for two decades nowith by using a low carb diet. I stupidly started eating sugar and starches again as I got better on T3 my appetite improved as well as lots of other things. No adverse reactions at all thus far.

trelemorele profile image
trelemorele in reply toEbs73

So it looks like pretty simple solution- from where I sit at least - don't eat sugars and/ or carbs you're going to be ok blood sugar wise. Right?

So what is the problem here then?

Ebs73 profile image
Ebs73

Tsh 0.01 (0.3-4.2)

T4 5.2 (9-23)

T3 12 (2.5-5.7)

These are my latest bloods I know it looks wrong but I've been feeling much better lately! Dr insisted I hope to a and e so I'm here now about my high blood sugar. And yes noore gluten free bread! I've been off the low carb wagon for a year now back to paleo ish! Thanks for your input everyone.

trelemorele profile image
trelemorele in reply toEbs73

My opinion - if you feel good and have no hyper symptoms you should continue with your regime.

My t3 level is 10.7 with end range 6.8.

Obviously both of us (and some others) need more t3 to get where other people get on lower doses.

How long have you been on 400?

Have you had any, slightest hyper symptoms ever?

Are you on the larger side?

Ebs73 profile image
Ebs73 in reply totrelemorele

Hi, I'm 5ft 10 inches. With the thanks going to T3 I have lost over 5st. I have no hypersymptoms at all. My hair stopped falling out my skin stopped splitting because it was so dry my chronic fatigue improved and the full body pain reduced lots of things got better on the T3. Dr in the hospital just now has said my blood tests are nothing to worry about and I can reduce my blood sugar with diet. Shame the gp doesn't agree! Low carb/starch for me!

trelemorele profile image
trelemorele in reply toEbs73

Fantastic!

Your bad symptoms are exactly like the one I had (and more) before I switched to t3 only.

So stick to what works for you and live happy.

You don't have to listen to your GP. I don't but also long time ago, stopped trying to educate them.

It's like talking to a wall, they think they know best.

Pointless exercise.

When my bloods arrived my GP told me to lower my dose of t3 to 25 (I'm on 100-150/day).

Yeah, right.... like I'm going to fall for that.

shaws profile image
shawsAdministrator in reply toEbs73

I'd stick with the Hospital Doctor. I think we know instinctively if doctor is right or wrong.

shaws profile image
shawsAdministrator in reply toEbs73

The blood tests were invented for T4 alone. If we take T3, the results will be entirely different, i.e. low T4 - we are not taking any - Higher T3 as we either take T3 only or add T3.

Levo is T4 alone and inactive. it has to convert to T3.

NDT contains T4, T3, T2, T1 and calcitonin, so again results will differ.

We never had blood tests for NDT - we were diagnosed upon clinical symptoms alone and given a trial of NDT. If someone took too much the dose was reduced: if they had symptoms it was increased until they felt well with relief of symptoms.

shaws profile image
shawsAdministrator

You are in a predicament right enough - on T3 only and doctors want any excuse at all to remove it. So you don't want to go to hospital.

I am not on a high dose but come hell or high water they cannot get me to take levothyroxine.

They cannot even fathom out what blood tests results mean - are completely ignorant about any clinical symptoms.

They don't believe in Thyroid Hormone Resistance at all which isn't surprising as they wouldn't have a clue on how to prescribe for patients who are.

web.archive.org/web/2010103...

web.archive.org/web/2010081...

Dr Lowe himself had resistance to thyroid hormones, and also an the Fibromyalgia Research Foundation (before his untimely death) and treated these patient with T3 only. He himself took a large dose, 150mcg in the middle of the night.

You will just have to tell them that you are self-medicating and will take charge of your own doses. You've been very ill and have returned to good health with your doses of T3 (I believe) so why would people who know nothing at all about the suffering we undergo if levo doesn't do us any favours, have the gaul to deny us life-giving hormones. It is only hormones not some 'under-the-counter' stuff many people may use on their weekends out.

shaws profile image
shawsAdministrator

I can understand you have to lower sugar but this also may interest you:

web.archive.org/web/2010103...

Ebs73 profile image
Ebs73 in reply toshaws

I'll take a look thanks. 👍

Gambit62 profile image
Gambit62

is there a history of diabetes in your family? if so might be worth looking into whether your diabetes is actually not type 2 but a MODY variant - which is closer to type 1 and responds better to drugs that stimulate insulin production.

diabetes.co.uk/diabetes_mod...

There are several different types of MODY that have been identified - and some tend to just operate in the background most of the time with low impact on sugar levels.

Ebs73 profile image
Ebs73 in reply toGambit62

Hi, there's a few cases of diabetes in my family my mum got diag

Ebs73 profile image
Ebs73 in reply toGambit62

Mum got diagnosed in her 60s my dad got diagnosed in his 70's my siblings are healthy. My nan got diagnosed in her 80's I'm the only person who's had blood sugar problems as a young person. I managed it for nearly two decades with a low carb/starch diet. I recently (1year) fell off the wagon and ate store bought gluten free baked goods and I believe this has ruined my normally good blood sugar levels. The dr in the hospital last night agreed with me and said I could try to get my levels down with dietary mods again and he would only suggest meds if this fails to work. I will take a look thanks.

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