I have been under endocrinologist at my local hospital (Cornwall) for about five years. I have progressed from T4 to combined T4 T3 and then to T3 only.
A year or so ago I saw a locum about something else, she looked at my bloods and referred me back to endo. without my knowledge. The consequence was I saw another endo. who insisted I needed to take T4 and reduce T3 until on T4 only. I didn't do this and fought off requests to do so. In sept. my gp came back (been away for a year.) and called me in . He suggested I add 25 mcg. T4 and see how I go. Endo. had put that no T4 would endanger my heart in my notes. I did as requested and was ill. Vertigo breathing problems and worse of all blood pressure rising dramatically.
On reporting these symptoms my gp suggested a visit to a different hospital (Devon).
The appointment has just come through and I want to be well armed but not demanding of this new endo.
So do I need T4 for my heart? is this a long term condition that might develop over years? Since stopping T4 my BP is back to normal as are breathing and vertigo.
In the years of T3 only I have not lost weight or had any symptoms over overactivity.
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beaton
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And here's me in Cornwall wanting an appointment with an endo it's not looking promising they know what do do either. Do you have copies of your blood results with ranges
The endos were ok until the last one. She was very full of herself and not interested in my questions or opinions.
Wishing you luck. x
You certainly do need t4 if you are pregnant or planning to get pregnant as lack of it causes miscarriage or developmental delays but past that point I don't think you really do. It's a storage hormone that converts over to t3 anyhow. Or doesn't if you don't convert well. I plan to go over to t3 only after my baby is born as there will be no more for us. This is most likely down to costs and costs alone they have done this. You obviously need it and don't convert that well.
Use the same weapon that they use: ask them to provide scientific evidence that you absolutely need t4 in your system. Many people live on t3-only and remain well:
"Safety review of liothyronine use: a 20 year observational follow up study"
Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents. All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400). Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked.
Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were LESS LIKELY to have cardiovascular disease or be treated with a statin. During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism. For patients taking liothyronine there was NO INCREASED RISK OF DEATH (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or CARDIOVASCULAR DISEASE (HR 0.90; 0.42–1.92). There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).
No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated. There was an increased risk of mental health disorders if liothyronine was used alone.
I feel exasperated when I heard docs' nonsense about T3 therapy. They should at least have enough decency to admit that British T3 is expensive and they haven't been competent enough to source a different manufacturer.
I hope you will keep your prescription without any further difficulties!!!
Louise from Thyroid UK will probably have a full text of this article (and possibly some others). It might be worth taking it with you when you go for your appointment. Take care
Re. increased risk of mental health disorders on liothyronine monotherapy: it's worth pointing out, for the benefit of those who may be new to all this, that in an observational study the associations demonstrated cannot be determined as having a causal correlation. It would take a randomised controlled trial (RCT) to show this. But obs studies like this one are still valuable in their own right.
T4 is an inactive thyroid hormone. Its job is to convert to T3. Sometimes we don't have sufficient T4 to supply enough T3 (the only Active Thyroid Hormone) and if we have a gene defect DI02 we cannot convert T4 at all. Particularly when they adjust doses according to the TSH which means the patient is rarely on an optimum dose for their needs and permanently unwell.
T3 isn't a weight loss hormone but either T4 or T3 on an optimum amount to raise our metabolism, can enable us to lose weight and some do so without a diet. T3 is required to drive our whole metabolism, including heart, brain and the billions of receptor cells in our body.
I am on T3 only and am fit and well. So, no I never want to take levothyroxine ever again.
If you are in the UK, the guidelines have now been changed as those 'in charge' have deemed that T3 is unnecessary (it has also been astronomically increased in price about £800 per month as I understand) So they have a great excuse to stop T3 nstead of permitting other T3s on a named-patient basis.
They may as well send me to an early death for all their education which is sorely lacking in hormones to enable our body to function fully and not struggle for years with this that and the other.
Before the introduction of levothyroxine and the blood tests. We were all prescribed NDT. This seemed to suit all of the patients and saved money, i.e. no returning so much to the doctors with remaining symptoms if given an optimum dose. No blood tests, so a fortune would be saved as well. The poor pharmaceutical companies who earn billions from levothyroxine because if it doesn't suit us we get other extra prescriptions for the symptoms remaining as Endos don't appear to know any symptoms so will treat it as 'nothing to do with hormones' but an extra prescription is given.
We are more likely to develop heart problems through inefficient doses.
I did say 'seemed' to suit. As that's all there was - I think only one ndt initially. If they didn't take it they would have died of myxedema if they had hypothyroidism.
History
The earliest oral treatment for hypothyroidism consisted of thyroid extract.
George Redmayne Murray of the United Kingdom first described treatment of myxedema with thyroid extract in 1891, and published a description of long-term successful treatment (28 years) of a patient with myxedema (severe hypothyroidism) in 1920[15] His treatment was quickly adopted in North America and Europe. The first recorded American use dates to 1891 by a woman who was still taking it 52 years later at 84 years of age [16]
Desiccated thyroid extract is prepared from pig thyroid glands. The glands are dried (desiccated), ground to powder, combined with binder chemicals, and pressed into pills. This was a new use for parts that were previously unwanted slaughterhouse offal, and Armour and Company, the dominant American meatpacker in the 20th century, supplied the best-known brand of thyroid extract.[citation needed]
Replacement by thyroid extract in hypothyroidism was one of the most effective treatments of any disease available to physicians before the middle of the 20th century,[citation needed] and in severe cases afforded dramatic relief of the myriad symptoms. The decision to treat was usually based on the presence of signs and symptoms of hypothyroidism because there were no accurate, readily available laboratory tests of thyroid function. Many less severe cases of hypothyroidism went untreated.[citation needed] Dosage was regulated by improvement of symptoms.
I am aware that people usually respond better to ndt than to levo-only mono-therapy. We all should be offered thyroid treatment, which is best for us as individuals, as opposed to the current "one size fits all" NHS treatment. Unfortunately ndt isn't a miracle cure for of us. I don't even want to think what used to happen to people who couldn't tolerate any T4, even in ndt. I guess they simply died...
I had to try several NDTs before I found 1 that suited me best but my favourite is T3 but not UK, so it is definitely trial and error for some members. We should be allowed to 'test drive' thyroid hormones.
This is what worries me about my mum she had never seen an endo and has been treated for hypothyroidism for many years by her Gp alone. She now has narcolepsy and I am wondering if her t3 levels are OK. She just trusts everything the doctors say. She also has depression, sleep problems and a long list of other medical conditions. Some which may or may not be related. She won't listen though and there's only so much you can say before you give up.
Theoretically, GPs are competent to treat people with hypothyroidism but the patient hits an insurmountable hill as GP is happy that the TSH is somewhere in range. Also they are not knowledgeable about clinical symptoms at all which is a problem for the patients.
Some people are also frightened (without showing it) in they feel that their symptoms are caused by more serious conditions and they'd rather not know.
Endocrinologists are referred by a GP when he feels he cannot assist patient and for a second opinion.
Most people find it extremely frightening to think that their doctors may no be 100% competent and may not know it all... I guess one has to have a healthy level of criticism and a degree of arrogance to question the "professionals". I'M GLAD WE DO
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