Hi all, I;m really hoping someone could help clarify some things for me.
I've been Hypothyroid for 14 years, treated with T4 only Levothyroxine, my levels are rarely stable for more than a year and have been treated with anything from 100mcg - 175mcg over this time.
My main problem now is in the past 9 months I've had a real return of many hypo symptoms, my weight has increased, my hair has thinned and fallen out, my skin is dry, my eyebrows have thinned, I'm extremely cold and of course the crippling fatigue. I've had two blood tests during this time, as a result of my first one my Levothyroxine was reduced much to my dismay from 150mcg to 125mcg, despite my protests my GP refused to do anything until I had tried this dose for 4 months and had a further blood test.
My results today were TSH - 0.08, T4 - 13. My GP has said that as my T4 is in range that there is no further action required, I'm feeling really dissapointed as I'm still feeling incredibly hypo and really struggling with the fatigue, I've arrange to speak to my GP tommorow and am hoping he'll agree to test my T3 levels as I'm starting to think their might be a conversion problem, can anyone clarify is this might be a possibilty based on my results or have any advice that I can speak to my GP, any help is really appreciated.
Thanks again, Nikki xx
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nikki_morgan04
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The worst thing is that GPs adjust thyroid hormones according to the whereabouts of the patient's TSH.
Did you have your blood test at the earliest possible time? Fast? (you can drink water) and leave about 24 hours from your last dose of levo and the blood test and take levo afterwards? These are relatively new suggestions so that the TSH is highest.
Tell her your symptoms have come back and you need a new blood test. The TSH changes throughout the 24 hours of the day and I'll give you a couple of links/excerpts which might help.
Some people need a suppressed TSH so if you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft. Highlight question 6 and the part where he says how low our TSH can be - even suppressed - plus the addition of some T3 and say that's what you want to aim for (ignore her if she says otherwise and stick to your guns). Tell her that she is forcing you to buy from the internet and that's the last thing you want to do but you do want to get well and instead of improving you are getting worse.
This is an excerpt:
February 17, 2008
Question: My doctor refuses to prescribe any thyroid hormone product for me other than Synthroid. He said that Armour's potency isn't reliable and you never know what you're getting with Armour. Is this true?
Dr. Lowe: I began working with patients who were hypothyroid in the late 1980s. To learn about the treatment of hypothyroid patients, I spent a lot of time talking with other doctors about thyroid hormone therapy. I soon learned that most doctors tenaciously held two beliefs that had been shrewdly planted in their minds by the corporation that marketed Synthroid. The beliefs were: (1) the potency of Synthroid tablets was perfectly reliable, and (2) the potency of the tablets or capsules of other products—especially Armour Thyroid—was highly unreliable.
Based on these two beliefs, the doctors dogmatically pronounced that all hypothyroid patients should be treated with Synthroid. The doctors’ pronouncement was thoughtless parroting of a sound bite from the corporation’s marketing campaign—a campaign so effective that Synthroid eventually became the third most-prescribed drug in the U.S.
In my view, the doctors who parroted the Synthroid marketing hype should feel shame; they allowed themselves to be duped by a sales campaign for a product that was—and still is!—no more reliable than any other thyroid hormone product. In previous publications, I have cited the FDA evidence for Synthroid’s lack of reliability.
Of course, Synthroid isn’t the only thyroid hormone product with reliability problems. In my experience, no brand of thyroid hormone is especially reliable. By this, I mean that fairly often, patients find that the potency of the thyroid hormone products they’re taking is lower than the label states."
Go to the date January 25, 2002 to read the whole answer:-
Two extracts from it:-
The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.
and
When the typical patient’s T4 dose becomes just high enough to produce enough T3 in the pituitary to suppresses the TSH, T3 production in other tissues will be inadequate to keep their metabolism normal. As a result, the person's tissue metabolism will be slow, and she'll suffer from symptoms of too little thyroid hormone regulation. The net effect of all this is that the TSH is effectively suppressed by a T4 dose that is inadequate for keeping the metabolism of other tissues normal.[1,p.990]
I suspect, then, that the problem in your case is that you're being treated with T4—the poorest choice of thyroid hormone preparations. I can understand why most mainstream doctors don't understand this matter. It’s complex, and, because of that, they tend to simply accept the opinions of conventional endocrinologists. What utterly baffles me is why conventional endocrinologists don't understand it.
Hi Nikky, so, another doctor that knows nothing about thyroid! And doesn't realise that the TSH on its own is meaningless, and that continually upping and downing the dose according to the TSH is damaging to the patients health.
That FT4 looks low, but difficult to say without the range. But if the FT4 is low, the FT3 is more than likely going to be low, and low T3 causes symptoms. The ignorance of the NHS is quite staggering! And it sounds as if your doctor is one that won't be told.
So, you may have to resort to threats, menaces and blackmail - the hypo's best friends. "If you Don't treat me correctly, test my FT3, and stop dosing me according to the freaking TSH, I will take matters into my own hands and treat myself!" You can do that. You can do private tests, and buy your own Levo - or even T3 or NDT. It costs money, of course, which is terrible when you think that you've already paid for your health care and they are cheating you out of it, but what's more important - the principle or your health?
Of course, she might call your bluff. But, then again, you might be better off without her! I know I'm better off on my own than with any doctor I've ever met!
Hi! Your TSH level is very low and T4 is on the bottom of the scale. Ask yor GP if you can have Liothyronin instead of some of the Levo. I have tried it for the last month and I feling better but still not OK yet.
What is the point of spending all that money on an rT3 test? If she's not converting - and we can tell that by comparing her FT4 with her FT3 - and the FT4 gets beyond a certain point, you can be certain her rT3 is going to be high. She doesn't need an expensive test to prove it.
And, we all know that the only thing you can do about it is to reduce the dose of T4 and add in T3. You don't need a test to tell you that. It's just common sense. However, the OP never did give us a range for the FT4, but it does look a little low. So, rT3 is unlikely to be out of range. So, what's the point?
In any case, this thread is two years old. It's a bit late to be commenting on it. A lot can happen in two years!
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