A different hospital kindly did some bloods for me for unrelated reasons and tree in thyroids, so I’ll have them with me when I go to the endocrinologist next week. Do people think it’s reasonable (or sensible) to ask for a dose increase?
I’m only taking 50 mcgs of levothyroxine at the moment and pretty sleepy.
The endo has never really committed himself as to whether my lack of tsh is due to pituitary insufficiency (Sheehan’s Syndrome) or suppression by incipient hyperthyroidism as the previous hospital would have it. I spent 9 months without treatment and developed the headache from hell but still made no tsh. My pituitary is almost normal on MRI, just a bit puffy, definitely not empty sella. The endo is very nice and always says he treats by symptoms rather than numbers- I hope so! The GP however is conceited about her endocrinologist abilities and has no qualms about making me ill. She has refused to prescribe the levothyroxine the consultant asked for several times.
Thank you all very much ❤️
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Ginny52
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The guidelines for central hypothyroidism are based on the FT4 value alone. I have seen reference to over the 50-66-75% of the reference range. You are not at this point yet, so you (well, your doctor) should increase your dose.
In theory a full replacement dose (1.6-1.8 mcg/kg of body weight) shouldn't be dangerous, unless you have hyperthyroidism and your thyroid is making large amounts of hormones on its own.
From your post history it seems that at some point you were overmedicated. Was you dose at that time greater than a full replacement dose?
I am pretty thin, just over 8 but tall. I had some odd blips last year when my t4 which had always been about 10-12 untreated suddenly had a couple of isolated surges, once to 31, but it seems to have settled down again now. I had previously been stable on 75mcg for some years. Thanks!
Your theoretical full replacement dose is 80-90 mcg, so you could even go a little higher than that. The average doses you see around do not usually apply to very slim people.
Your FT3 may seem high, but if your physiological level is high and your body is able to convert it from the levothyroxine I can't see a problem.
The Pituitary Foundation (pituitary.org.uk), which is sort of NHS approved and aligned, has this article on the management of central hypothyroidism pituitary.org.uk/news/2017/.... The also have a brief article about Sheehan's syndrome, but it doesn't say much.
Have you managed to get a full assessment of your pituitary function? If you have other untreated pituitary issues, no amount of thyroid hormones is going to make you feel well.
I’m very lucky, my endo is pretty onboard and has done everything he can so far- my hgh is apparently fine and so is my cortisol], it’s just no tsh.This thing with disproportionately high t3 is just this last year and I kind of feel it must mean something but I don’t know what! I had no idea my body could do that! ❤️
This was a recent random test when I went to A&E about something else. They were lovely and did lots of bloods, although not vitamins.No, I’ve always been antibody negative. One of my results suggested low b12- I’ll go back and check. This was odd because I’d been taking a supplement- maybe I could have been worse!
Endo always says he’s aiming for upper range so that is most reassuring- he’ll raise it, I hope.
Essential to test vitamin D folate, B12 and ferritin
When not on high enough dose levothyroxine then vitamin levels likely to be low. This is because we develop low stomach acid, leads to poor nutrient absorption and low vitamin levels as direct result
Frequently necessary to supplement vitamin D and vitamin B complex virtually continuously to maintain optimal vitamin levels
About your comment regarding additional t3- yes, that’s what I thought too, but I did this by myself with no additional synthetic t3. What do you think it means? These results have been the same, with disproportionately high t3, for about a year now. Thank you very much for your help
Yes- I certainly have nodules. Very roughly, what happened was, last spring I was quite stable on 75mcg, and then at a routine endo appointment my t4 was slightly high and the endo I saw, not my usual one, reduced it to 50. Then my levels became surprisingly volatile and deranged, t4 up to 31 at one point and down to 11 a few weeks later. I stopped treatment altogether so that they could do tests including another technetium scan and it became evident that my tsh wasn’t suppressed by thyroxine because it never rose above 0.01.I had my second scan which showed some nodules but I think there were fewer than in the scan done by a previous hospital. They were very noncommittal about the productivity of these nodules.
I read somewhere, I think Wikipedia description of de Quervain’s, that these nodules could degrade and produce surges. Anyway, I managed without levothyroxine until November when I became more and more ill and developed a constant headache, so restarted at 50mcg. Now my t4 seems to be declining but t3 still disproportionately high, so I’m not sure whether a rise is appropriate or not. I didn’t know until annamaria told me above that only t4 values are given for central hypothyroidism x
I’m going to approach the mess that is my desk in a little while, and I’ll give you some numbers from the time.I was not pleased when completely destabilised!
Did you lose huge amounts of blood during childbirth?
I have sometimes thought that accident victims or victims of surgical problems or people who are attacked, stabbed or shot could develop Sheehan's but it never gets mentioned.
Mine was obstetric disaster- couldn’t get an ambulance during miscarriage, lost several litres of blood, hospital somehow discharged me with Hb of 6 and it was nearly 2 weeks before they noticed and called me back for transfusions- all fun!I think your pituitary is only vulnerable during pregnancy because it swells up a lot, and suddenly loss of blood pressure during birth or miscarriage can cause damage to the cells that produce pituitary hormones.
Doctors tend to hugely underestimate the proportion of their interventions that go badly for the patients, in my experience. It’s still usual for texts about Sheehan’s to say that it’s rare in developed countries, but it’s certainly not that rare to haemorrhage badly during childbirth, and I’ve seen contrary texts that estimate the chances of sustaining pituitary damage from such an event as 1 in 5, so they can’t both be right! I’ve also noticed that doctors are loath to criticise one another’s efforts, possibly for legal reasons.
Have you had other hormones tested that are released from the anterior part of the pituitary gland? If TSH is low due to Sheehans Syndrome then usually one or more other hormones will also be affected, such as prolactin, GH or ACTH (in which case cortisol could be low also).
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