Frustrated and getting fatter

[lynm]

My go has written to a local endocrinologist to get me seen. I have today recd a copy of his letter stating he will not see me in clinic. I am to stop taking liothyronine as it is no longer prescribed in Somerset he suggest I increase my thyroxine although he has never seen me or my blood results. I am grossly overweight in spite of eating carefully. I see my GP this week to try and sort myself out. She is of the opinion that my thyroid function is normal and that my aches and pains, weight gain, general fatigue are caused by something else. I will post my blood results when I receive them. I am considering seeing an endocrinologist privately, will this be a waste of money? I had a partial thyroidectomy about 20 years ago and have become increasingly unwell. Would welcome any advice, this is my first time to post on this site although I follow it daily

[SCarr998]

I just saw a private Endocrinologist and I may as well have thrown my money away. He just said that T3 is red carded by the NHS and not prescribed. It will also lead me to have heart problems and Osteoporosis if I continue taking it. He told me to drop my medication down from 150mcg T4 to alternating doses of 100/125 mcg T4 and wait 3 to 6 months to see some improvement. 

[shaws Administrator in reply to SCarr998]

He is being untruthful except he thinks it is the truth. Rumours abound about thyroid hormones and considering T3 is the active hormone and resolved all my symptoms. Osteoporosis and heart problems are more probably being on too low a dose of levothyroxine.

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

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

Did you leave 24 hours between your dose of levo and the test. Did you fast before it?

If you didn't it might have skewed your blood test results with the Endo reducing your medication. They shouldn't reduce our meds due only to the TSH as it can rebound on us.

If you can get a print-out get a copy and post on a new question.

[SCarr998]

I suspect the heart problems and Osteoporosis are more likely to be caused by undiagnosed or inadequately medicated Hypothyroidism for many years. My gran had Osteoporosis and she was ill for many years before they figured out what was wrong with her.

[SCarr998]

A High Fat Low Carb diet may be the answer to weight problems. It has been the only thing to work for me apart from a juice only diet which I do not recommend to anyone

[shaws Administrator]

Welcome to our forum Lynm

Your story is so familiar and the nearly 40,000 on this forum have similar stories.

Your doctor is wrong and another who knows zero about treating a patient as they are advised to treat and diagnose by the TSH alone.

All of these - aches and pains, weight gain, general fatigue - are symptoms of hypothyroidism. We can be very poorly treated.

When the doctors pronounce 'normal' they infer that we, the patients, are also normal because the dot on the paper informs them of that. Do they know clinical symptoms - NO because they don't treat symptoms at all.

See your MP and say that you are being denied an important thyroid hormone, the only Active one which doesn't need to be converted as does levothyroxine. Sometimes the dose of levo isn't sufficient but for me - levo gave me serious disabling symptoms. I'm fine now on T3 only. Even the addition of some T3 was an improvement.

It is because, due to this forum, that I assume many are asking for a trial of T3. Many on this forum buy their own now in order to feel much better but we shouldn't be forced to do so, particularly if people are unable to work due to their symptoms.

I didn't have part of my thyroid removed so you must be worse. An Endo might be a waste of money but I assume you would probably have to pay for T3 and in the UK it is prohibitive now. Something like £130 for a month whereas you can source it yourself.

Get a copy of your blood test results from the surgery with the ranges and post for comments.

If you've not had B12,Vit D, iron, ferritin and folate tested ask also as they can cause symptoms if low.

email [e-mail] for a list of sympathetic doctors.

(I am not medically qualified - just have my own experience)

[lynm in reply to shaws]

Thank you for your kind help. I was prescribed T3 by an endocrinologist  about 3 years ago. I don't think messing about by increasing and decreasing levothyroxine is helping me at all. I will raise all the points with my GP when I see her on Wednesday. I am going to email the link you gave me. Many thanks

[shaws Administrator in reply to lynm]

Tell her that adjusting the dose (as they've been directed to do) is making you worse. Can she test your Free T3? (probably wont) but copy this and highlight re Free T3 - you can also tell her that Thyroiduk.org.uk is an NHS Choices for information and advice. I doubt she knows that of all the thyroid hormones, T3 is king as it is the only hormone that drives our metabolism. Say that your T3 should be towards the upper part of the range.

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

[Hidden]

Don't rule out heavy metal toxicity, it can stop thyroid meds from working.

[galathea]

Liothyronine is still listed in the bnf and is perfectly prescribable.   If your health group want to stop prescribing it purely on cost, then take the matter up with your mp.    evidence.nhs.uk/formulary/b...

Xx

[shaws Administrator in reply to galathea]

I agree with Galathea about seeing your MP about being denied life-giving thyroid hormone (even though the BTA's guidelines state levo alone is to be prescribed..

[AmandaK in reply to galathea]

I have just read an email from TPAUK stating that T3 is one of the prescription drugs that the NHS will be dropping for reasons of cost as part of their cost-cutting measures. The rationale is that there is no justification for its use and that alternative treatments are available - and we all know what that means... Sheila is writing in response.

[shaws Administrator]

Isn't it ridiculous that in the UK patients have to order online to recover their health. Thousands are unaware if they don't have internet.