T1D and high anti-thyroglubulin antibodies

[Jonman]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

 

[EllieM]

Doctor has been useless.

Is this your GP or can you get referred to an endocrinologist? They would be the obvious port of call both for T1 and any sort of thyroid/endocrine issues.
Sorry, but I have no experience with your particular issue, other to say that I don't think T1 alone should be making you feel ill like this (assuming your bgs are under control.)

 

[Jonman]

Hi Ellie

Yeah I'm going to ask for a referral, the pandemic has thrown appointments all over the show.

 

[Hertfordshiremum]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

Hi So sorry to hear you are feeling ill. I have Hashimotos and Type 1 LADA diabetes Are you taking Levothyroxine and has the doctor run a TPO antibody test?

 

[Medina27]

I was finally diagnosed with sarcoidosis along with my type 1 and the symptoms are exactly as you mentioned however without further medical investigation there's no way to know for sure what you have

X rays on my chest gave me the diagnosis

 

[Sarahlouxoxo]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

Hi, I was diagnosed with hypothyroidism at 19, I’m now 34 and was diagnosed with type 1 on New Year’s Day. Unfortunately diabetes and hypothyroidism can go hand in hand they are both auto immune conditions where your immune system attacks your body. Hypothyroidism can be fixed really easily with medicine, I take levothyroxine. But when you’re not medicated it can really cause havoc with your body and mind. I know when my levels aren’t correct because I’m so so tired yet I can sleep constantly, I feel the cold so badly, I have mood swings and generally just feel ******. I would go on at your gp because even being borderline hypothyroid can make you feel ******. Good luck, but as I said if you are finally medicated hypothyroidism is a breeze compared to diabetes

 

[Soplewis12]

Hi, I was diagnosed with type1 when I was 21, now 52. About 4 years ago tests showed my thyroid was overactive, horrible symptoms of anxiety, hyperactive, couldn't sleep, loss of weight, etc. Tables turned and I am no underactive but medication helps. One autoimmune disease can lead to others but not with everyone. I have 5 siblings, 2 with underactive thyroid but so far I am the only type 1 diabetic.

 

[Jonman]

Hi So sorry to hear you are feeling ill. I have Hashimotos and Type 1 LADA diabetes Are you taking Levothyroxine and has the doctor run a TPO antibody test?

Hi - no. Any tests I've had have been done privately. I just feel dreadful every day

 

[action replay]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

Hi, so sorry to hear how you are feeling. I have had T1 since aged four and am a younge 74 year old! I had thyroid cancer 6 years ago. Successfully operated on, but just recently feel very tired and unwell like you. My consultant did a blood test and even after six years on 100mg of levothyroxin my thyroid levels are still very high. Thyroglobulin tests should have been done every year, but weren’t. Don’t know why! I would definitely push for more tests. Don’t give up, Even though you won’t feel up to it, Get your doctor or diabetes specialist to do blood tests. My doctor upped my dose by 25mg, going for a blood test on friday to see the outcome! I hope you find some strength to see your consultant. Carol

 

[Jonman]

Thanks Carol. Hope you feel better soon x

 

[Jonman]

Hi, I was diagnosed with hypothyroidism at 19, I’m now 34 and was diagnosed with type 1 on New Year’s Day. Unfortunately diabetes and hypothyroidism can go hand in hand they are both auto immune conditions where your immune system attacks your body. Hypothyroidism can be fixed really easily with medicine, I take levothyroxine. But when you’re not medicated it can really cause havoc with your body and mind. I know when my levels aren’t correct because I’m so so tired yet I can sleep constantly, I feel the cold so badly, I have mood swings and generally just feel ******. I would go on at your gp because even being borderline hypothyroid can make you feel ******. Good luck, but as I said if you are finally medicated hypothyroidism is a breeze compared to diabetes

Thanks Sarahlou - my fingers, toes and everything else are crossed x

 

[Jonman]

I was finally diagnosed with sarcoidosis along with my type 1 and the symptoms are exactly as you mentioned however without further medical investigation there's no way to know for sure what you have

X rays on my chest gave me the diagnosis

Thanks friend. That sounds awful. The human body is so complex. Best wishes to you x

 

[AndBreathe]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

Hi Jon - Depending on your lab range and then your levels, it is likely you have Hashimoto's Thyroiditis which is an auto-immune form of thyroid disease.

Any diagnosis is likely to be made in conjunction with your TSH, which was very likely tested at the same time (ideally FT$ and T3 were also tested)?

As someone living with T1, your thyroid should be tested regularly, but most often the NHS only tests TSH, then perhaps T4 if the TSH is elevated enough.

Do you know if you have been tested on the NHS at all, and what those tests showed?

Annoyingly if you do have Hashi's, your antibody levels can fluctuate quite a bit, but many find taking Levothyroxine (T4) to be helpful.

Dealing with thyroid disease is not a quick process and it can take several months to come to a diagnosis, and even longer to achieve adequate levels of medication.

Be aware, I am not diagnosing you with anything. Nobody here can do that, but I have some decent knowledge of thyroid disorders, having gone through a long and frustrating process to be diagnosed and medical options to feel better.

You must persevere, and don't be fobbed off.

An excellent forum for thyroid challenges is the Thyroid UK area of Health Unlocked: https://healthunlocked.com/thyroiduk/posts

 

[Erin]

Hi all

Just looking for a bit of help/advice if possible.
I have T1 diabetes - was diagnosed late 2018 - and over the last two years I've been getting increasingly unwell.
My main symptoms are fatigue (incredible at times), mood swings (mainly deep depression), aches and pains and a general feeling on unwellness. I venture out to the shops but that's about all I can manage.
My dad and brother both have diabetes and seem to be able to go about life relatively normally where as I struggle to get through the day I feel so ****.
I've long suspected my thryroid and have had two private tests - both times my anti-thyroglobulin antibodies reading has come back high. It was high on my first reading and higher on my second - the results of which I just got today. The test were 10 months apart.
Has anybody had any experience with this. Is it possible it's Hashimoto's or am I barking up the wrong tree?
My other thyroid readings were all normal (though my free T4 was low on the first test).
My blood sugars are relatively stable (for a T1 that is) and I can't think that I should feel this ill without there something else going on. I may be wrong.
Doctor has been useless.
Feeling pretty hopeless.

Many thanks
Jon

I suspect a thyroid problem because of a med switch (implicated with thyroid function). I take Synthroid 0.112 but lately I have had muscle problems, which could of course be any number of things, given so many meds and new meds. I hope to get an endo referral. Sympathies;

 

[x Carol x]

After being diagnosed with T1, I had horrendous fatigue and after reading lots online I knew it was caused by an underactive thyroid. I felt terrible. My blood test results just showed borderline though and this was the case for years despite feeling so bad. I was finally able to get a diagnosis with the NHS after insisting they do an antibody test (TPO and tgab). After it came back positive, I finally got the diagnosis of Hashimoto's and then there was no problem in being prescribed Levothyroxine. I would advise you to go to your GP and show him/her your results and ask for a trial of Thyroxine.