Thyroid trouble - Duchesse, Space cadet or other experts needed please.

[ladylush]

Have trawled through all the threads on hypothyroidism but keen to devour any more info people might have, before I go and badger the gp for thyroxine tomorrow!

In a nutshell, my tft was as follows: tsh 7.8 (normal range 1-4) T4 normal. Don't have the score for that as results were read out over the phone. Antibodies weren't tested. My research so far tells me that this is sub-clinical hypothyroidism, however it can be associated with non-specific symptoms - and I do believe I have these (lethargy, dry skin, morning nausea, bone pain, weight gain of 1st over past year and inability to shift it even with regular exercise and healthy diet, constant upper respiratory tract infections, menstrual changes, itchy eyes, mood changes)

Now, had I not had 3 m/c (first trimester) and if I wasn't desperate for a baby, I would quite happily wait for gp to run more tests and monitor the situation. However, the reading I have done so far indicates that conception and pregnancy requires a TSH between 1-2 and mine is 4 times that. Do you think that argument is enough to convince a doctor? I have saved some links to my favourites so I can take them with me tomorrow.

Definitely. My consultant insisted that during pg, TSH should be between 1 and 2. Consultants often have tighter ranges than GPs. You definitely need to insist on an appointment with a specialist. My t4 has always been normal but I am on 125 mg of thyroxine to keep tsh under control.

Thank you, that is very helful. Do you know what your tsh was prior to starting thyroxine? Also what dose did you start on? I know they have to be careful with doses but I want the tsh to come down quickly so that I can conceive.

Also, did you have symptoms?

Nothing specific but am generally cold and overweight. Thyroxine hasn't particularly helped with either. I did have two early MCs but I don't necessarily think they were caused by the thyroid issue.

I think my TSH was around 6 when I was diagnosed (but this was in Switzerland where they are a bit more interventionist).

Post pg it went up to 16 and I'm just managing that down now which is why I'm on quite a high dose. When I started out I was on 50 - 75 mg.

Good luck!

Doctors also wanted to get my TSH down as close to 1 as possible for conception and pregnancy. 7.8 is too high - especially when you consider recent developments in US medicine which say 0.3 to 3.0 is more like normal, not 1-4.

God I have all the same symptoms as you but my GP seems to think am neurotic female. When you say "normal" T4, remember to find out precise levels- what is in the "normal" range is not necessarily normal for you. (eg I suspect that 12.1 T4 is not "normal" for me, given how crap I feel at time). I have a fair amount more info gleaned from various friends who use alternative practitioners and other therapies, so if you draw a blank with GP, come back here and say. Also remember to tell go you are ttc as it makes a difference to treatment and follow-up (levels fluctuate in early pregnancy and need frequent monitoring/ upping of dose of you're on Thyroxine). Good luck with your GP- mine have been bloody crap.

Got my Thyroxine 50mcg to start with and bloods in 6 weeks to check levels. Very very pleased that GP was so accommodating. Wasn't expecting it at all.
Duchesse - my T4 is higher than yours (at around 15). The fact that yours is at the lower end of the range and your TSH at the upper, plus the fact you are ttc should be enough to convince them that a trial of thyroxine is worthwhile.Can you get a private px?

I always write px and it should be Rx.

I started with thyroid problem after a whiplash injury which broke the spine on one of the bones in my neck. 6 years later and 6 stone heavier I lost nearly 2 stone when I was pregnant without trying. I lost a further stone while breastfeeding. Then, I gained 6 stone no matter how little I ate until I finally got a diagnosis after 3 years of blood tests. A sister at the hospital also was hypo and knew exactly how I felt. We both agreed that if Mel Gibson came to the door begging for sexual favours we'd tell him that we'd rather have a snooze curled up in a cardi and please would he try next door! After a long fight I am now on 150 microgram of thyroxine (T3) and 12.5 microgram of iodothyronine (T4) which is equivalent to 275 microgram of thyroxine and still weigh between 19 and 20 stone. Mary Shomon has a website which can be quite helpful and there are loads of books on amazon about the condition. This month's newsletter has details of a BMJ article which mentions that the normal range is produced from test results that contain blood samples from people who are underactive but who have never had treatment - probably 30 and 40 something women who are on anti-depressants!

I too did a lot of reading and the research in the US indicates that 1 microgram of thyroxine per pound of body weight is a usual dose. I had hoped that my dose would be set to allow me to be slightly overactive so as to lose the weight, but this hasn't happened. I'm now abroad, and so far the effort of going to the GP and arguing the toss about feeling half-dead in French has been a bit too much to contemplate.

Anyway, keep pestering your doctor and when you get treated eventually you'll have enough energy to get angry!

Hope this helps

Don't get me started about gp's and thyroxine and early mc. My gp's is bloody useless. As long as they keep me slap bang in the middle of their so called normal range they are happy sod the fact that I still feel shit and am still putting weight on. Mind you previouse ones weren't much better. My thyroid went wrong when I wa 16 took till I was 24 to get a correct diagnosis. I am now on 125mcg/day thyroxine but still wnt to stay in bed all day. Suffer from depressio anyway so they have also bunged me on AD's and accussed me of comfort eating. I am not even hungry ffs.

mummyhill - what is your TSH? I am a bit concerned about the 1mcg per pound thing as 50mcg will be way too low if that's the case. It's a shame your GP is not very helpful.

Last tested in September and they would only tell me that it was "normal" which drives me barmy as I want to know what my tsh is.

Please don't blame your GPs-they are managing hypothyroidism according to well established guidelines and normal ranges.
It is usually only levothyroxine that is prescribed in the UK for replacement.
Treatment is aimed at getting TSH and T4 back into the normal range-there is no accepted guideline about treating to dose/bodyweight.
Over-treatment can lead to serious complications in later life-cardiac arrhythmias, osteoporosis, heart failure.
By all means ask to be referred to an endocrinologist if you feel your GP is not adequately answering your concerns however.

Sorry neverenough but I hate being cold all the time, having my joints and bones physically ache, being a size 22 when I used to be a size 12, constantly feeling tired and feeling so low. When I approached the idea of seeing an endo I was told that there was no need as my levels are "normal".

Have you had a fasting glucose mummyhill? I was delighted with the help I got from my GP but I think the fact I am ttc swung it.

You should insist on the actual numbers mummyhill. Most still use the 1-4 range for TSH which is pretty unhelpful.

Yes I have had a fasting glucose and all was ok on that front.

Neverenough - I do blame the doctors I saw previously for not taking an interest in what investigations were being done by the Consultant hence not offering me other blood tests eg TFT, glucose etc. The one I saw the other day was great. I don't believe in giving credit where it is not due.