Diabetes and hypothyroidism - medical negligence?

nannoo_bird · Jan 26, 2023

I have had T2 diabetes for around 15 years, and around 12 years ago I was diagnosed with Hashimoto's. In the mid-90s, my GP expressed concern about my thyroid and said I should keep an eye on it, especially as my mother had an operation on her thyroid (and she later developed diabetes).

However, since then my diabetes has developed and I am now on insulin. No doctor has been in the least interested in the Hashimoto's since the diagnosis, and I have now developed a goiter. I suffer from insomnia, and tonight in bed I stumbled across a report on this site linking diabetes with thyroid disease, and both need to be treated as they are related diseases. After more research I discovered that the NHS blood tests for thyroid function do not give the full picture so many people fall through the net.

I have recently been diagnosed with anemia and instead of linking this to diabetes - poor kidney function can make you anemic - they fast-tracked me for an endoscopy and a colonoscopy, both of which produced negative results. Of course I am delighted, but was this necessary? The cost to the NHS compared to a kidney function test must have been huge, and I had to wait and worry all through Christmas until this week for the results.

This all may seem rather rambling, but what I am trying to say is if a holistic approach had been taken from the outset, I might not have suffered all the debilitating symptoms of Hashimoto's over the past 12 years, and perhaps the diabetes issues could have been addressed. I am so angry - I know the NHS is falling apart and has been for a number of years, but it is negligent not to address the fact that diabetes and hypothyroidism are linked and can exacerbate each other if not equally treated. My life has been debilitatingly affected for years and I am beyond angry that this could have been avoided. Am I missing something? Have I just got my wires crossed? If anyone has any knowledge of the situation I would be so grateful. Thank you so much for reading this far.

JoKalsbeek · Jan 26, 2023

nannoo_bird said:
I have had T2 diabetes for around 15 years, and around 12 years ago I was diagnosed with Hashimoto's. In the mid-90s, my GP expressed concern about my thyroid and said I should keep an eye on it, especially as my mother had an operation on her thyroid (and she later developed diabetes).

However, since then my diabetes has developed and I am now on insulin. No doctor has been in the least interested in the Hashimoto's since the diagnosis, and I have now developed a goiter. I suffer from insomnia, and tonight in bed I stumbled across a report on this site linking diabetes with thyroid disease, and both need to be treated as they are related diseases. After more research I discovered that the NHS blood tests for thyroid function do not give the full picture so many people fall through the net.

I have recently been diagnosed with anemia and instead of linking this to diabetes - poor kidney function can make you anemic - they fast-tracked me for an endoscopy and a colonoscopy, both of which produced negative results. Of course I am delighted, but was this necessary? The cost to the NHS compared to a kidney function test must have been huge, and I had to wait and worry all through Christmas until this week for the results.

This all may seem rather rambling, but what I am trying to say is if a holistic approach had been taken from the outset, I might not have suffered all the debilitating symptoms of Hashimoto's over the past 12 years, and perhaps the diabetes issues could have been addressed. I am so angry - I know the NHS is falling apart and has been for a number of years, but it is negligent not to address the fact that diabetes and hypothyroidism are linked and can exacerbate each other if not equally treated. My life has been debilitatingly affected for years and I am beyond angry that this could have been avoided. Am I missing something? Have I just got my wires crossed? If anyone has any knowledge of the situation I would be so grateful. Thank you so much for reading this far.

Hypothyroidism affects diabetes. Ovarian cysts affect insulin sensitivity. Insulin insensitivity can cause non alcoholic liver disease. All of these things were treated separately, and no-one bothered to check my blood sugars. I had to find out I was diabetic by using my late cat's glucose meter and getting an 18+ reading. The doc who told me my non-alcoholic fatty liver disease would kill me (it hasn't so far), was surprised when I asked him about my diabetes. He was an endo specialist, but this wasn't his area of expertise. He just waved it, and me away. For some reason, everything's been chopped up in different bits, and ooooh yes, a holistic approach would be so, so much better, efficient and, you know... The smart thing to do. But that's not how our system works, I'm afraid. I don't know if you can call it negligence... Maybe complacency or being stuck in a certain way of doing things. You're always free to file a complaint, with 12 years worth of misery to back you up... I don't know whether it'll help much, but you can sure try!!!

Hugs!
Jo

AndBreathe · Jan 26, 2023

nannoo_bird said:
I have had T2 diabetes for around 15 years, and around 12 years ago I was diagnosed with Hashimoto's. In the mid-90s, my GP expressed concern about my thyroid and said I should keep an eye on it, especially as my mother had an operation on her thyroid (and she later developed diabetes).

However, since then my diabetes has developed and I am now on insulin. No doctor has been in the least interested in the Hashimoto's since the diagnosis, and I have now developed a goiter. I suffer from insomnia, and tonight in bed I stumbled across a report on this site linking diabetes with thyroid disease, and both need to be treated as they are related diseases. After more research I discovered that the NHS blood tests for thyroid function do not give the full picture so many people fall through the net.

I have recently been diagnosed with anemia and instead of linking this to diabetes - poor kidney function can make you anemic - they fast-tracked me for an endoscopy and a colonoscopy, both of which produced negative results. Of course I am delighted, but was this necessary? The cost to the NHS compared to a kidney function test must have been huge, and I had to wait and worry all through Christmas until this week for the results.

This all may seem rather rambling, but what I am trying to say is if a holistic approach had been taken from the outset, I might not have suffered all the debilitating symptoms of Hashimoto's over the past 12 years, and perhaps the diabetes issues could have been addressed. I am so angry - I know the NHS is falling apart and has been for a number of years, but it is negligent not to address the fact that diabetes and hypothyroidism are linked and can exacerbate each other if not equally treated. My life has been debilitatingly affected for years and I am beyond angry that this could have been avoided. Am I missing something? Have I just got my wires crossed? If anyone has any knowledge of the situation I would be so grateful. Thank you so much for reading this far.

Nanoo_bird, hypothyroidism is actually very common. Hashi’s is an auto-immune from of thyroid disease, which can be more associated with T1, rather than T2, although the thyroid is a cornerstone of metabolic health.

In reality, Hashi’s should be treated from diagnosis, but it rarely is. just like treatment not being started for hypothyroidism unless the TSH result breaches 10. Many other countries have different standards on this.

like anything auto immune, antibodies, and the associate levels of treatment support can vary enormously, so it’s not an easy one to get right. What treatments are you on now.

I have only experienced one Endo interested in looking wider than the apparent issue, and he was private. I now see him on the NHS.

Part of the reason he was so interested in me was the swathe of AI conditions in the medical histories of my immediate family. Initially he just wanted to know which of them I had. When the tens of tests were done, and no definitive AI condition diagnosed. From then on he is interested why I DON‘T have any AI conditions. (A couple of results were inclonclusive and in the interventing period I have had one “weak positive”, but that level of positive asymptomatically affects a percentage of the population. AI conditions can become VERY complex.

I think rather than go guns-ho into a negligence scenario, you could see a second opinion on your overall situation. You are entitled to a second opinion on the NHS, but, you need to be clear what that second opinion is on, rather than being plain old dissatisfied.

nannoo_bird · Jan 26, 2023

Thank you both for your really interesting replies, even though you have both suffered health problems in your journey to get proper diagnoses. I live in Cornwall which is not the best place for in-depth medical investigations. I do not want to seek apologies or compensation from the NHS, I just want to know why the Hashimoto's diagnosis has been waved away by every doctor I have mentioned it to. If there is so much evidence that current thyroid tests are all-but-useless, why are endocrinologists still relying on incomplete data? I can't do anything about my "lost" years, but I will try to make sure my remaining years are lived well and with the right, holistic, treatment, even if I have to go to London to get it.

oldgreymare · Jan 29, 2023

From what I understand, having any autoimmune condition can mean that you may be susceptible to others (type 1 diabetes, rheumatoid arthritis, lupus, Crohn's disease are just a few) and from a lifestyle basis the order in which they make themselves symptomatic can be very varied. Since being diagnosed with Type 1 diabetes I have had regular thyroid tests, sometimes TS3, TS4, TSH, sometimes just TSH. In theory annually, but disrupted by Covid, so last NHS check after 2 year break. Thankfully all markers for me are in range, but I will keep a close eye on future tests.

Unfortunately although in theory the NHS provides comprehensive care across all NICE guidelines, what happens at the local level is still a postcode lottery due to NHS bureaucracy.

Personally I think your best strategy is to focus on action for your Hashimoto's going forward, while maintaining close engagement with your specialist diabetes team. The NHS is trying to develop more integrated care approaches on many, many levels but this will still take years to trickle down in full practice.

Edited to add - would you consider volunteering as a patient advocate for your local health groups?

PatsyB · Jul 2, 2023

I myself have had an underactive Thyroid since my teens, always taken levothyroxine for it I was never aware in all my years that one could develop Diabetes with this condition but seems it is likely. Having lived with under active Thyroid for 60 years I can sympathise with others but wish I had known I could develop diabetes before It actually happened !!

carol43 · Jul 2, 2023

I've had an underactive thyroid for many years well before T2 diagnosis. I've never had any symptoms of UT. Doses of T4 have gone up and down over the years. Paid for a blood test through Blue Horizon which showed that I do not convert T4 to T3 (had a zero score) so I need T3 but cannot get it prescribed by the HNS because it is so expensive so I have a private source, pay around £10 for 100 tablets.

AndBreathe · Jul 2, 2023

carol43 said:
I've had an underactive thyroid for many years well before T2 diagnosis. I've never had any symptoms of UT. Doses of T4 have gone up and down over the years. Paid for a blood test through Blue Horizon which showed that I do not convert T4 to T3 (had a zero score) so I need T3 but cannot get it prescribed by the HNS because it is so expensive so I have a private source, pay around £10 for 100 tablets.

@carol43 - I am very fortunate to have my T3 prescribed on the NHS.

In recent times, the classification of T3 has changed, and whilst it remains a consultant only medication, it has come down the pecking order from red to amber. Your GP can now monitor your thyroid function, under the guidance of the Endo.

The ridiculous costs to the NHS have reduced quite significantly, but I doubt that does much to shift he entrenched view of many Endos.

Have you considered asking to be re-referred for another go? I describe my T3 as transformational to my Endo.

nanabon · Aug 3, 2023

nannoo_bird said:
I have had T2 diabetes for around 15 years, and around 12 years ago I was diagnosed with Hashimoto's. In the mid-90s, my GP expressed concern about my thyroid and said I should keep an eye on it, especially as my mother had an operation on her thyroid (and she later developed diabetes).

However, since then my diabetes has developed and I am now on insulin. No doctor has been in the least interested in the Hashimoto's since the diagnosis, and I have now developed a goiter. I suffer from insomnia, and tonight in bed I stumbled across a report on this site linking diabetes with thyroid disease, and both need to be treated as they are related diseases. After more research I discovered that the NHS blood tests for thyroid function do not give the full picture so many people fall through the net.

I have recently been diagnosed with anemia and instead of linking this to diabetes - poor kidney function can make you anemic - they fast-tracked me for an endoscopy and a colonoscopy, both of which produced negative results. Of course I am delighted, but was this necessary? The cost to the NHS compared to a kidney function test must have been huge, and I had to wait and worry all through Christmas until this week for the results.

This all may seem rather rambling, but what I am trying to say is if a holistic approach had been taken from the outset, I might not have suffered all the debilitating symptoms of Hashimoto's over the past 12 years, and perhaps the diabetes issues could have been addressed. I am so angry - I know the NHS is falling apart and has been for a number of years, but it is negligent not to address the fact that diabetes and hypothyroidism are linked and can exacerbate each other if not equally treated. My life has been debilitatingly affected for years and I am beyond angry that this could have been avoided. Am I missing something? Have I just got my wires crossed? If anyone has any knowledge of the situation I would be so grateful. Thank you so much for reading this far.

Diagnosed with graves disease in 2012. Now post rai hypothyroid. But the endo that treated the graves told me I would be diabetic within 10 years. Sadly, he was right. But,I really appreciate that he took the time to have astraight up conversation with me. Those docs are few and far between.

Diabetes and hypothyroidism - medical negligence?

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