My Ft4 has declined from 12nmols/l (on a RR of 9 to 19) to 10.
I almost got started on an undignified ‘no it isn’t/ yes it is’ argument with the hospital endocrinologist about whether this is low (I.e. meriting thyroxine treatment), or not. I dropped it, to hang on to what shreds of dignity remained to me, because I think in his mind there is no such thing as ‘low’, only within range or below range- you just suddenly begin to be ill at <9nmols/l when you were perfectly fine at 10nmol/l.
Am I the only person to whom this sounds deranged?
Love to all,
Ginny
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Ginny52
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Nothing wrong with your thinking, shame I can't say the same about your Endo's. Trainee GP I saw in 2013 just out of 6 months rotation with my endo would have thought FT4 12 low in that range let alone FT4 10.
I once said to my doc, "Isn't is amazing how such a tiny change of medication produces such a profound way in how well you feel." He said irritatingly," No, not with most people, just with you and a couple of other patients!" If you don't feel well, increase your dose of medication a little bit and don't worry about the numbers too much. If you felt OK at 12 and lousy at 10 then up the meds a bit, you could have put on a bit of weight which would necessitate an increase in dosage (first approximation of dosage is done by weight.)
Nothing they say seems to have to make ANY sense, even in consistency! A 1 nmol point can be the difference between getting treatment and not, as far as my man’s concerned, and yet your one says only the unnaturally fussy can feel any difference. No wonder it’s a hopeless mess! X, G
12 is low never mind 10. Since the ranges were altered say 6/7 years ago its gone number crazy.
Before that the top range was 28- I keep my results.
You definitely need some meds- not great for your organs to be so low. Also some of my friends suffered from depression caused by low levels. They are much improved now with the correct vitamins and medications. Personally speaking ( as mine results were dire) it also affected my adrenals too.
Dr Toft, who sounds kind and sensible, says people seem to feel best about two thirds of the way up the range- that would mean about 18 nmol/l for me. I actually did feel much better when I achieved this with self treatment on t3, which I’m working towards again (hospital says computer says no treatment for me!)
I am beginning to feel they don’t always know what they’re doing. G x
Unfortunately yours is a very common situation to be in. Results low enough to be ill, but doctors will not acknowledge it until you reach a certain cut off, and that cut off is very extreme.
We more usually hear doctors wanting an out of range TSH. What was yours? If it was high you may be able to shop around for doctors and find one who acknowledges it.
If you have Hashimotos your thyroid function will reduce over time, and eventually you'll cross that line. You may have to wait years of being ill, tho. You don't mention your symptoms, so don't know how bad it is now.
If you have self medicated in the past, and want to again, make a new post asking for places to buy, and members will private message you. If you use T3, the freeT4 result becomes quite meaningless, and you definitely need freeT3. You can buy these as mail order finger prick tests from BlueHorizon or Medichecks.
My tsh was .1 without medication, so I think the problem is pituitary (goes down to .01 on 30 mgs of t3). Dr P told me about a place to buy which looks solid- just about to put my first order in! X G
So this is central hypothyroid, not primary hypothyroid. Even more need to get this recognised, put on your record, and investigation of other pituitary hormones.
If you had primary hypo doctors would be following the procedure to not treat you, cruel though it is.
But with central hypo you should,at the very least, be sent to an endocrinologist. There are very few guidelines for how to deal with central hypothyroid, but you definitely should be in the system.
My other doubt about my last hospital visit is whether the blood tests he asked for will be enough to show the functionality or lack of it of my pituitary, but I should trust him about that- it’s just they let you down so often you lose confidence a bit.
I’ll try to make this super-short so as not to risk boring you to death.
I first got really ill about 18 months ago with what I now see were typical hypo symptoms.
Blood was off though, suppressed tsh without raised thyroxine, so gp (lovely) asked for hospital endo appointment.
Waited 9 months, and when I saw them they said I had subclinical hyper, and that it couldn’t cause symptoms, so being half-dead I joined thyroid Uk and learned about an Alevel’s worth of endocrinology.
Found Sheehan’s syndrome, realised I was a likely candidate having had an almost fatal haemorrhage durin a miscarriage and multiple transfusions.
Went back to hospital endo at the beginning of this week- I thought the sky would turn black and the sun move backwards in the sky when I told them I thought they were wrong, but he defused me a bit by being equivocal. I’d already been to Dr Peatfield and tried t3. It was wonderful but I began to feel very sick after a week so not sure if this could be hypoadrenalism from pituitary damage.
Just got Genova cortisol results this morning though. Dr P says it shows high cortisol, low DHEA, and v low t3 and t4. I can’t understand the results at all!
Restarted t3 two days ago and hoping for the best!
Dr P thought I probably just started on too high a dose, and I’ve found the pills I’ve got can be cut in half, so I’m now taking 15 mgs instead of 30 for the first week or so.
The comments I posted above are actually from a hospital consultant endo! My gp is magnificent, and I would much rather be treated by him, but my initial blood results were sufficiently anomalous to mandate being (not!) treated at the hospital instead.
I thought they would take central hypo more seriously as well, but apparently not so.
Sounds like you are at least gettting investigated, which is good.
15mcgs is actually still quite a high starting dose. People tend to go up in 10mcg increments if they have no trouble at all, but people with adrenal problems so sometimes struggle to get started on T3, so you could go down to as little as 5mcg or even less if you get a bad reaction.
Dr P is the very best, so you are in good hands. If your GP is very supportive you may be able to follow Dr P's advice, and have your GP sign off on it and keep you in the system, and not worry about the Endo. Often they are rubbish, particularly for anything out of the ordinary.
I'm currently in the situation of self medicating, and my Endo, who is really a breast cancer surgeon, is fine with it happening and writes that in my notes.
Yes- I actually think he had trouble making the mental switch from primary to secondary, and from hyper to hypo.
Tell me what you think of Toft!
I read his ‘Counterblast’ thing and I thought he sounded nice (never having met him), at least for a representative of the deservedly embattled thyroid establishment, but I’m keen to learn, and you make it sound intriguingly Twin Peaksish.
My gp is wonderful, but I don’t want to put him in any sort of awkward position re the hospital Endo Department. My last visit there was only this Monday, so I’m still waiting to see what the consultant thinks happened at that meeting, along with results from the bloods he ordered.
I did get the results for the Genova tests Dr P had me do. I’ve never seen one of these before so it took me a little while to make sense of the different units but as far as I can see, NOBODY, not even a nhs endo,could say the thyroids are not low. Dr P says ‘unacceptably low’.
I can’t attach an image here, but they give a normal range for t3 of .61 to 3.38, and mine is 1.03
T4 normal range is 1.03 to 8.24, and mine is 1.49
Cortisol was higher than Dr P expected, with 9.27 on post awakening, (nr 2.68-9.30), 24.89 at lunchtime (nr 0.75-2.93) afternoon 1.30 (nr 0.36-1.88), and bedtime 0.39 (nr <0.94)
So I’m hoping that at least I can make cortisol.
DHEA was low, 0.11 (nr 0.25-2.22)
Thank you so much for the T3 dose advice. I just started taking 30 mugs because the pills I got were that size, although I did find I could crush them or pulverise them. Dr thought 15 would be more sensible, and I do have problems with nausea and an unpleasant pain under my ribs. I broke my pill in half this morning, but later, impatient, I took the other half anyway. I think the nausea is low blood sugar.
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