So sorry but I need help yet again.

[1239]

Brief synopsis. Suspected by doc hypo since 1994 (Hosp letter agrees timeline). Treatment from 2009 after late Dr. S diagnosed me (quote 'Are they blind? You only have to look at you to see you are hypo!'). TSH suppressed since started on levo but never too high before. Taken levo and NDT with support of my GP until she left last year. New GP didn't like TSH suppressed and refused meds referring me to endo.

Bloods Feb 19 were

TSH <0.02 (0.27 - 4.2)

T4 19.5 (9.0 - 26) Normal

T3 4.8 (2.8 - 7.2) Normal

Hospital just rang about my blood test results from Tuesday. He gave no ranges but would assume as above

TSH Too low!

T4 29

T3 Too high!

I have to reduce my meds yet again, despite putting on weight and my hair falling out, from approx 205 to 175 and now to 150.

I don't understand how a reduction in meds has caused my T4 & 3 to increase so much. I must be converting T4 to T3 but not absorbing as it just seems to be going into my blood and nowhere else! I have an appointment next week and really don't know what to say to them. Could it be pituitary problems or something else? I still have lots of hypo symptoms but i know they will say they aren't.

I'm so sorry this is so long. I wouldn't have gone back to the endo except I needed travel insurance when the GP started all this.

Any advice would be gratefully received.

[MaisieGray]

1. Simple question to get out of the way first: Were you taking Biotin (B7) whether alone or in a supplement such as Vit B Complex or something for hair and nails? If you are, and the assay method used involved biotin also, the results can be skewed in either direction.

2. More likely, have you been tested for / diagnosed with Hashimoto's as you could be going through a temporary rise in hormone levels due to the after-effects of an attack on your thyroid, where the damaged cells release their hormones into the blood stream? If not, it would be worth your while having a comprehensive set of tests carried out privately as so many of us do, to include both TPO and TG antibodies.

[1239 in reply to MaisieGray]

Hi Maisie

No I don't take anything with vit B in it. My B12 is quite high 652 (191-663) without taking anything. I have just broken 2 of my fairly short nails tho and my hair is very thin!

They (the lab) would only test TPO and they were 28 in Feb but no range and normal.

[greygoose]

TSH Too low!

T4 29

T3 Too high!

No, that's just not good enough. It tells you nothing whatsoever - besides, you can't have a TSH too low on thyroid hormone replacement. And, you need to know exactly what your FT3 is. 'Too high' is just an opinion - and I don't give much credence to their opinions at the best of times!

Do you live in the UK? If so, the law says you are entitled to a print-out of your results, which means you get all the numbers: results and ranges - not just their opinions. I wouldn't accept that, if I were you, but insist on your legal rights.

And the problem is, you aren't converting your T4 to T3 all that well! Not that 'they' would understand that. But, despite your low TSH, you are under-medicated. You need an increase in dose, not a decrease.

It might be that you have problems getting the hormones into the cells, but we can't know until you're adequately medicated. And I very much doubt if it has anything to do with your pituitary - do you happen to have your results from when you were diagnosed? But, it's true, they know nothing about symptoms.

You can't work out what to say to them until you've seen the exact numbers. So, can't help you there. But refuse to reduce your dose at all costs. And, what's more, if it were pig-headed me, I would say 'if you don't increase my dose, I will self-medicate and give myself the increase I so desperately need.' And, do it!

[1239 in reply to greygoose]

He was just ringing to make sure I was taking my meds properly! Only been taking for 10 years.

I will get a printout of my results. Oddly my GP's say they have no access to hospital blood results. I feel like I need an increase. I could quite happily (after crying) go to sleep now. In fact it's causing a headache trying to stay awake.

When I was diagnosed by Dr S it wasn't on the blood test results just symptoms. My waking pulse is around 58 and if I sit quietly before doing my blood pressure, around 130/63 ish, it's 60. Temp was 35 ish as well. Trouble is that when I get within a few miles of the hospital both blood pressure and pulse rise as I'm stressed about the fight to come.

Is it central hypo when you don't absorb at the cellular level?

Think this will be my first and last trip to America. EU travel insurance is so much easier!

[greygoose in reply to 1239]

No, Central Hypo is when the problem lies with the pituitary or the hypothalamus, rather than the thyroid itself. For some reason, not enough TSH is secreted to stimulate the thyroid to make hormone. So, you have low TSH, but also low Frees.

When you don't absorb at the cellular level, it's called Thyroid Hormone Resistance. But, as I said, we can't tell if you have that, because you don't have enough hormone in your system to be absorbed. You're simply under-medicated.

[1239 in reply to greygoose]

OMG. I got a copy of the letter to my doc today in the post. Again no ranges but I presume same as before so TSH <0.02, T4 29 and the too high T3 is a massive 5.4!!! (Range was prev 2.8 to 7.2) Apparently it is ‘indicative of mild hyperthyroidism’. How do these people keep their jobs?

[greygoose in reply to 1239]

Because nobody else in the NHS knows anything about thyroid, either, so doesn't know how wrong they are.

And, obviously this lot know nothing at all. How can an endo believe that a hypo patient can suddenly become hyper? I would love to have an explanation from them of exactly how that happens. lol