Thyroid UK
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Long term hypothyroidism

Hi been hypothyroid for 35 years. Still have to battle every time I see the endo. T4/T3 combo constantly changes. Endo said weight gain due to fork in mouth syndrome and that I should consider running a marathon. It seems that I am to blame for all my symptoms and not this debilitating thyroid disease. Animals are treated with much more understanding and care than people.

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Poor you for having an Endo that needs to attack because he doesnt know how to do his job.

You need to get copies of your thyroid results so you can take your health into your own hands.

Post your results on here for members to advise. If you havent any recent results, please ask your GP to test Vit D, B12, Folate and Ferritin.

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Thank you I will try to obtain them

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"Endo said weight gain due to fork in mouth syndrome and that I should consider running a marathon. "

Jeez!! Are we allowed to slap these disgusting apologies for doctors? What a diabolical way to talk to a patient.

"T4/T3 combo constantly changes."

No doubt a diabetes specialist who hasn't got a clue how to treat Hypothyroidism and probably doesn't understand how results should look when on Levo/T3 combo.

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It is upsetting that the patient is ridiculed and demoralised for being unwell through nofault of their own. If endos have this attitude who else can we turn to for advice?

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This forum will get you well in no time. Collect copies of all test results that are legally yours and post in a new thread so more people see them and can advise and support ... 😊

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Easy, we turn to the good people on this site and become informed. As long as you followed the advice on here you should start to become well, not needing GP's or rude, Endos.

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I think I would have jumped across the desk and physically attacked a doctor who said that to me. What an arse.

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This is a typical reason for assertive training, not aggression which will get you nowhere.

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I got the same exact response...."fork in mouth" disease. I walked out of her office and found another doctor. Just to maintain my weight, I am on under 600 calories a day and still put on 60 lbs. in less than 6 months. The doctor I saw just said "stop eating so much and you'll take off the weight." Why are some doctors such jerks and don't even know a thing about what their supposedly trained in? Most are specialists in diabetes not hypothyroidism. Hand you a pill and say your fine.

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Sorry for the harsh treatment you've received from this incompetent doctor. Horrible! They fail at their jobs & it's the patient's fault. I'm also a Type 1 diabetic & believe me endos are just as useless with diabetes.

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G2G2, I'm often curious about whether people with diabetes get treated any better than hypothyroid, and whether diabetes is as little understood. If you've got time could you say a bit more about it, please?

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It's the same story with diabetes as it with thyroid issues. Doctors are way behind research & don't/won't update their thinking. Patients are told that higher than healthy A1c is normal, treatment isn't started soon enough, low carb is usually frowned upon or not recommended. People are told to eat whatever & cover with insulin, which doesn't work. Doctors have hypoglycemia phobia, fearing liability. As a consequence, higher blood glucose is encouraged. Diabetes management has to be the patient's responsibility & we're not given the tools by doctors because it's too time intensive to educate patients (if indeed they even knew how to). Type 2 diabetics are also medically mistreated. Oral Type 2 meds are often ineffective & some are risky. More T2's should be on insulin.

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Thanks G2G2, that's extremely interesting!

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For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Sounds very much like you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

If so low vitamin levels are extremely common and it very likely you need to be on strictly gluten free diet

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

She also has list of recommended thyroid specialists

You definitely need a new endo

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

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Thank you

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What an ignorant waste of space and public money! I wouldn't agree to see such a vile person again. We are not allowed to disrespect them, but they can insult us as much as they like with no come back.

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