Medical mystery.....

[Despena]

Hi everyone here's one 4 the books...I had a complete thyriodectomy when i was young (20) now 53 for the past 33 years have been on...now wait 4 it folks...1000 that's 1000 mg of levothyroxine a day! And in the past 5 years have gained a lot of weight..you'd think 1000mg stick thin nada..have a healthy diet drink plenty of water etc also get very tired and lethargic when I go see the doctors at hospital after being referred by GP..several times over the years .. they hear 1000mg and it's like they go brain dead and look at me as some kind of medical mystery or alien take your pick and none of them has given me any kind of advice or told me why this is happening so.....this my question has anyone heard of or tried natural/desiccated thyroid is it better than the synthetic stuff ie levothyroxine and if so where and how can I get some...Oh I forgot I was never overweight as a child or teenager always lent towards the slim side of the scale had an overactive thyroid but was misdiagnosed and told I had under active thyroid and given thyroxine 4 nine months yep I was like a demented banshee not only was I producing to much thyroxine they where giving me more on top I went from slim to skeletal you think they would of notice in the end a doctor friend of my dad's who hadn't seen me for a while sorted it out when he found out what was going on and by then I had to have my thyroid removed as it was to far gone sadly he is no longer with as or I go to him as he was about one of the only doctors I had any confidence in...please help thank you

[shaws Administrator]

My personal viewpoint is that they should now give you an alternative to levothyroxine. My personal preference would be for Natural Dessicated Thyroid Hormones which contain all of the hormones our own health thyroid gland would produce. Doctors can prescribe for this on a 'named-patient basis' but some have been prescribed by their Endocrinologists. Fortunate people.

This is an excerpt - and you don't need to read the link as there are others below.

Dr. Lowe: The "hormone problem" you need to consider is the T4-replacement you’re on. A study published in 2000 showed that weight gain is the usual result of being on T4-replacement therapy.[1] This confirms what hundreds of patients on T4-replacement have told us: they gained weight on T4-replacement and couldn’t lose it, even if they dieted and exercised, and they lost the weight shortly after switching to a slightly TSH-suppressive dose of a T4/T3 product, such as Armour or Thyrolar. These patients weren’t fat and lazy when they were on T4-replacement. Instead, they weren’t breaking down fats fast enough because T4-replacement was ineffective for them. And most likely, that’s exactly why you’ve gained and retained weight.

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

The British Thyroid Association make False Statements against Natural Dessicated Thyroid Hormones as well as insisting that levothyroxine alone must be prescribed and this is the appropriate link of the Rebuttal to the BTA:

thyroidscience.com/Criticis...

web.archive.org/web/2010073...

With the above link Dr Lowe's main point is that usually the dose is too low - not in your case obviously.

I think you must have something called Thyroid Hormone Resistance to be on such a high dose. Many people complain of weight gain when on levo alone.

web.archive.org/web/2010032...

Regards

P.S. I am assuming you live in the UK.

[Despena in reply to shaws]

Hi yes I do live in the UK thank you for your reply and web links I will definitely look in to all your suggestions and do some research as well and then armed with all the information will demand the doctors do something about it

[shaws Administrator in reply to Despena]

Despena,

I hope you're not disappointed as most doctors stick strictly to the guidelines laid down by the BTA and that's levothyroxine only and diagnose by TSH.

I think as you are very unique due to your dose of levothyroxine, the least they can do is give you a trial. You might not need as high an equivalent dose of T3 as you do on T4. Have they ever done a Free T3 test - just a matter of curiosity - to determine how much T3 is actually getting to your cells? This is an excerpt:

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.

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

[shaws Administrator]

I had an after-thought. You may well be resistant to thyroid hormones and maybe treatment with T3 alone would be more beneficial for you. Read second letter down.

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

[gabkad]

Despena, do you have any blood test results?

I can't find it now, but last year I posted a Medscape article written by an American endocrinologist who discussed the fact that there are people who require significantly larger daily doses of levothyroxine.

[Clutter]

Despena, you are definitely taking the largest dose of Levothyroxine I've heard of on the forum but there is research showing people with resistance to thyroid hormone do need supraphysiological doses to overcome the resistance.

Shaws suggestion that your FT3 be tested is good as you may not be converting T4 to T3 even on such a high dose and the addition of Liothyronine (T3) will be beneficial if your T3 is low. If your T3 is good it is possible that you need even more Levothyroxine.

thyroidmanager.org/chapter/...

thelancet.com/journals/land...

press.endocrine.org/doi/ful...

[helvella Administrator Thyroid UK]

I have read of a man who was on 3000 micrograms of levothyroxine (plus a bit, if I remember correctly) without any signs or symptoms of overdose. It is not unknown - simply rare. Am trying to re-find the details!

[helvella Administrator Thyroid UK in reply to helvella]

One person was taking 3300 micrograms a day for about three years without any obvious problems:

ncbi.nlm.nih.gov/pubmed/752...

From earlier thread here:

healthunlocked.com/thyroidu...