I'm new here - just joined - but I'm so frustrated I no longer know what to do.
I was diagnosed with Graves' disease about 7 years ago, and had radio-iodine treatment following blood tests. I've been on 100 - 125 mg of levothyroxine for the past 6 years. After 2 years of trying to get pregnant, we were finally successful in May last year. Then I miscarried. Fell pregnant again in September, and miscarried. Again in November, miscarried in January. Despite telling my GP that my dosage should increase, he told me it was fine, and did nothing. In December, he did a blood test, and said I should get bloods done by the midwife in January. A different dr reviewed my Dec blood sample, and said they were 'fine' and that I didn't need to have them done again until March at the earliest, and the midwife refused to take blood. The reception staff refused to make an appointment for a blood test because the dr had said I didn't need it. Then I miscarried.
Finally (after threatening the practice with a medical negligence suit) I got an appointment with an endocrinologist.
He seems to think I may have been wrongly diagnosed in the first place, and has said that my dr clearly knows nothing about thyroid. He says my dosage has clearly been wrong for the last 6 years. He increased my medication. I've recently had tests done by the practice again, and the results show a TSH level of 0.04. The consultant is on holiday just now, and I don't want my doctor to advise me on, well, anything frankly.
My previous levels on 125mg were: (TSH Far too high)
TSH 9.49
T4 16.2
T3 1.5
My current levels on 150mg are: (TSH Far too low)
TSH 0.04
T4 22.4
T3 1.7
What should I do? I'm at the end of my tether with this.
Written by
Mrs_Sch
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Wow.......T3 looks low and T4 tops. A friend of a friend mine kept miscarrying and went to see Dr Peatfield. After treatment she successfully carried twice....I think follic acid was involved.
Thank you... a happy story. I'm so fed up of this now.. my period was 3 days late last month, and my first thought was 'Am I emotionally ready to miscarry again?' That can't be good, so it's nice to hear that someone got the proper treatment.
T3 is far too low, you may have a conversion problem or perhaps are converting into Reverse T3.
Would your consultant be open to T3/T4 combination or T3 only treatment?
I am very sorry to hear of your problems and miscarriages. Very sad and very upsetting for you, emotionally and physically. I think I was told by a medical professional (and I could be wrong) that if a woman has more than 2 miscarriages she should be referred to a specialist to do further investigations into the cause.
It may well be your thyroid to blame, and the web site PR4NOW referred you to does give lots of info.
But if I were you I would insist you are treated by the endo specialist and remain under their care (rather than GP) and that you also referred to an obs/gyno specialist so that between them to get to the cause of your miscarriages.
I have now (finally) been referred to the endo specialist, and would rather see him than my GP. He is trying to get to the bottom of the problem, but I suppose with the lack of good care so far, I'm still a bit sceptical. My endo is on holiday just now, and I'm not sure what to do about my meds, following the last set of results. I've woken up today with another migraine on top of the sore throat I've had for 3 weeks, and I just want everything to stop so I can re-group. Really fed up, and it seems like everyone around us is pregnant of having babies with no problem, which isn't really helping. Endo is back in a week (the day I go back to work), so I'll just have to wait 'til then.
Firstly, let me say how sorry I am to hear your story and that you have been through the pain of 3 miscarriages. I write to perhaps give you a little hope. I was diagnosed with Hashimotos (and a resultant underactive thyroid) in January 2012. I had suffered a miscarriage in October 2011 (which will have more than likely been as a result of my TSH being 23+ at the time, but I was unaware of that back in Oct 2011). For the duration of 2012 I began the process of self educating with regards to thyroid disease, this site was extremely useful, and taking control of my care. To cut a long story short, under the care of my GP I woud have remained on 50mcg Levothyroxine, never have been diagnosed with Hashimotos and probably would have been continuing my struggle with fertility issues. It sounds like you are having a similar struggle. After a long fight (and also paying to see a private endo in July 2012 who immediately increased my thyroxine to 100mcg), I was referred to the care of a good NHS endo who confirmed something that my GP had been unaware of, something I had been trying to explain to them but to no avail: In order to conceive (and maintain a pregnancy) your TSH must be below 2.0. I think my GP's scale goes as high as 5.0. As I had been unsuccessfuly trying to conceive again since Oct 2011 my endo agreed my TSH should be suppressed. At last bloods it was 0.02 which everyone is happy with. I was also referred to a fertility specialist in 2012 who agreed and who also concluded they believed my problems with trying to conceive had been in relation to my TSH being too high. I only got it under the 2.0 barrier in August 2012. After 18 months of trying and being told IVF would perhaps be the best option for us, I found out in February this year that I had conceived naturally. I am now 10 weeks pregnant. the first thing that happened when I found out I was pregnant was that my levothyroxine was increased by 25% to 125mcg and my bloods were then tested 4 weeks later. They showed a TSH of 0.02 and T4 of 17 which is at the upper end of the scale and where it needs to be in pregnancy. I also remain under the care of an antenatal endocrinologist at the hospital as well as the standard midwife care. I'm due to be tested again at 16 weeks.
Looking at your TSH now, this looks good. The T4 is on the high side which might be in relation to the conversion issue as mentioned in other responses earlier. I have never had my T3 tested, only my T4, however I do feel much better now, over a year into treatment which I think must mean I am converting fine. You do appear to be in a very good place in respect of the TSH though. You also say your period was 3 months late. My cycle was all over the place until only recently (the last few cycles) when I had everything under control.
I know how it feels to see everyone around you get pregnant and I hope I am not being insensitive in talking about how I am (believe me, I think I understand the pain you are feeling). I just wanted you to know I have been in a similar situation to you due to thyroid disease where I believed it would never happen, but, with the right treatment, it can. My advice to you would be to remain under the care of the endo and also ask for a referral to a fertility specialist. You are entitled to this as you have, very sadly, had 3 miscarriages. I got the referral as I had been trying for over a year and also turned 35 during that time. They do lots of tests and are very helpful. One of the first things fertility specialists do is look at the thyroid as part of their routine investigations which says it all really doesn't it!
A week seems a lifetime away when you feel ill and are going through what you are, but please hang in there. You should start to see a difference in repect of your care going forward now you have this appointment. Please also get the fertility referral from your GP.
Sorry for the long reply. I hope some of this has helped.
I could actually cry - this sounds so like me, but a step ahead! Thank you, that's really helped. I wish you luck with this pregnancy - when I miscarried in January I was 11 weeks and 5 days - 2 more days and we'd have told everyone, and I think that made it harder. Keep in touch.xx
That's what I thought when I saw your story! My heart just went out to you. This last year has been the hardest of my life but it has been worth it, and you can do it too. So devastating for you to get to just before the 12 week mark, in some ways even harder because it was just about to become 'official', if that makes sense.. You are already in a healthier position with your TSH so you're already starting the road to recovery. Keep in touch too. Please let me know how you get on..xx
Endo got back to me, and has DECREASED my dosage from 150mg daily, to 100/125mg on alternate days. Not sure that this is what I'd have done, but I'm going to give him the benefit of the doubt and get retested in 6 weeks.
So, 125mg daily was too little, 150mg daily was too much, and now I'm on 100/125mg on alternate days. Can anyone explain why this would be correct?
Dear mrs sch and adoc, im so sorry to hear about what you've been through and im so glad adoc that things are finally working out well for u xxx
I was diagnosed as hypothyroid years ago and after being on 100t4 for many years struggling with long cycles and tiredness i was eventually put on 75t4 and 7.5t3 which felt like the perfect dose.
However, when i fell pregnant in jan endo took me off t3 as they said it was too unstable to manage in pregnancy and put me back on 100t4.
Im sure u know that altering t4 can take some months to take effect, whereas t3 is fast acting, so my dose was effectively reduced as i was suddenly without any t3 in my system and having to wait a month or more for the extra t4 to kick in.
A week after this dose change my baby died unbeknown to me and i later miscarried at 10 weeks, utterly devestated.
Im now ttc again and am insisting i stay on t3 throughout my pregnancy which they are happy to do, im seeing a different endo with more experience in this.
What i wanted to comment on was that your docs adoc felt that a tsh of 0.02 was fine while ttc, im so relieved and interested to read this as my endo rang last week to say i have to reduce my dose as my tsh is too low at 0.02 even though my t4 and t3 levels are normal, not even the high end of normal!
Not sure if iv posted this too late to join the discussion but i hope your pregnancy is still progressing well xxxxx
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