Anyone else diagnosed with hypothyroid / underactive thyroid?

[Cariad Bach]

After some advice /support from any others who FCC with hypothyroid? Need to pick your brains!

 

[Cariad Bach]

Sorry should of read ttc!

 

[Lara_M]

I am! Are you newly diagnosed? X

 

[Cariad Bach]

Hi, got diagnosed back in July last year and still trying to get level under control - so frustrating as been trying to conceive for 2 1/2 years and now think that it could have been down to my thyroid levels...? We've had tests and are clear so we are 'unexplained infertility'. Doctor yesterday has increased my dose from 75mg to 125mg of thyroxin. Back ground of me below.
........................
Ok a bit about me. I'm almost 32 and I was diagnosed with an underactive thyroid in July 2013. My bloods showed TSH of 8.2 before starting off on 50mg of levothyroxine. Started to feel better quite quickly, noticed difference in skin, hair, cycle and most importantly how I felt in myself, I was beginning to feel more alert and more get up and go in me which was brilliant. When told I had hyperthyroid I was initially pleased to hear they had found something as hubby and I had been trying to conceive for 2 years with no luck, despite tests all clear (lap & dye clear, and hubby sperm good).

I returned for my follow blood test 6 weeks after starting meds and level had come down to 2.43 which doc recommended increasing dose to 75mg. Had another blood test 6 weeks later and TSH was 0.26 (local lab recommends 0.27-4.20), and I explained that I still wasn't feeling brilliant and had had a few dizzy spells and hot flushes so he thought dose was too high so dropped me back down to 50mg. I wasn't convinced at the time that this was the right decision, but had to go along with his opinion. I was fine for a week or so then felt dreadful really tired, aches and pains and just besides myself. I couldn't get an appointment very soon to see doc and it would mean having repeat blood test first before they will agree to increasing dose (despite that I had been on 75mg previously). I just knew I couldn't wait and demanded that I had the higher dose prescription immediately - not like me to react like this but just felt so ill and upset of their reaction. He agreed over that I could go back up to 75mg and that I'd need a blood test in a weeks time - result!

The next blood test showed TSH 0.16 in early December and I was feeling brilliant. Saw other GP and he said even though my level is under the 'normal' range he goes more on how patients feel. I've now continued on this dose for must be 6 weeks now and the last week have felt myself deteriorating with tiredness, feeling cold, achey etc, so managed to get a slot with doc yesterday and he took bloods. I managed to get results this morning and my level has gone back up to 5.26 so looking under medicated. I go back to see GP in the morning so I'm hoping he will increase meds. I felt so ill I'm home from work today and had to come home early yesterday, not done that before since being diagnosed.

The one thing which is concerning me is not having been able to conceive and I'm convinced it's down to my TSH levels. I've waited so long to try and get pregnant I just pray every month it will happen but with no success.

My gynaecologist has left my name on her list so I can be referred for IUI or IVF if I wish when I'm ready, but as the tests came back clear we had decided to see if we can catch naturally for the last year.

I've been thinking about starting the ball rolling with the IVF /IUI now but since I've left I'll this last week and TSH level seems to have gone all over the place again that I perhaps need to get this sorted before perusing fertility treatment as I'm not convinced it will work if my body is not strong enough. I'm in a fortunate position where family have offered to pay for me to see a consultant privately who specialises in thyroid disorders. I'm going to ask GP to send through the referral tomorrow when I have my appointment. I feel that unless I don't push this myself I'll end up waiting another year or more to get my levels sorted and will perhaps eat into time I have to try and conceive.

Anyone else experiencing / experienced similar?

Xxx

 

[lisa1985]

I have underactive thyroid, I conceived after only 2 months of trying, but miscarried at 10 weeks Have no idea if it was to do with thyroid issues, but my thyroid levels have been unstable for 18 months. Am very scared about trying again! x

 

[Cariad Bach]

I'm sorry to hear that Lisa1985, this must have been a really hard time for you.

Had you been diagnosed and on thyroxine before you conceived? Do you know what your TSH levels were before starting medication and what dose you were on?

The more I read on this there seems to be common trend with miscarriage and thyroid issues. It's all very frightening and scares me too. I asked my GP if I should wait ttc until my levels stable but he said no to just keep trying. I've just had my dose increased again now to 125mcg but I've found this too much of a jump - it was making me feel high and sick, so I've decided to drop my dose back down to 100mcg (which is still higher than my 75mcg dose before I came ill/hypo again this last week).

I'm planning a visit to an ENT thyroid specialist next week (privately) to get a second opinion. I think it will be money well spent - even for peace of mind GP is managing it appropriately.

x

 

[lisa1985]

Yes I was diagnosed around 2 years ago. I started at 25mcg, then went to 50mcg, then to 75mcg, I conceived on 75mcg, then I think when I was 7 weeks pregnant I had blood test and they upped it to 100mcg, 1/2weeks later I started bleeding, went to epu and baby was measuring smaller than it should have been and had a slow heartbeat, when week later sadly baby had died, was awful! I have no idea if the thyroid caused it as they don't test you after 1 miscarriage, they say it's just ''one of those things and very common''

I have no idea what my TSH level was, but I am seeing doctor about thyroid in 2 weeks so I am going to ask and also see if she will refer me to a specialist as I want to try and conceive again soon. When I was pregnant my doctor was going to refer me a to a pregnancy specialist that deals with women with thyroid issues, but as I miscarried I didn't get to go.

How much is it costing you to see a specialist if you don't mind me asking? x

 

[lisa1985]

This is a good website for info on thyroid problems, fertility and miscarriage x

http://natural-fertility-info.com/preventing-miscarriage

 

[lisa1985]

This is a good website for info on thyroid problems, fertility and miscarriage x

http://natural-fertility-info.com/preventing-miscarriage

 

[Clementine]

Hi Cariad - I have had an underactive thyroid since I was 24, when diagnosed I was put on eltroxin and my Endocrinolgist wanted to keep my TSH around 2.0. I am now 42, I only met my hubbie at the end of 2010 and we started TTC in August 2012 (I was 40), since then I have read up loads on thyroid and pregnancy. I would recommend you book appointment with Endocrinolgist as a lot of GPs and even some Obstetricians don't understand thyroid issues. When TTC my Endo wanted me stable around TSH 1.0 with Free T4 at high end of range, when you get pregnant your TSH increases (more underactive) so it is normal that your eltroxin is increased as soon as you get positive preg test. Whilst pregnant TSH over 2.5 is not good.
There are different types of underactivity, some people's thyroid still works for others they have antibodies to their thyroid so they rely completely on taking eltroxin daily. I am antibody positive. Also get them to check your B12 levels as if you are underactive for a while you may lack B12 so need injections) When pregnant the preg. hormone hcg can make your TSH appear lower than it actually is, so it's v important that they also test Free T4. Since TTC I have gotten pregnant twice but had 2 missed miscarriages at 10&11 weeks the first time may have been down to my thyroid as GP would not let me increase my eltroxin and my TSH was 5, the 2nd time was put down to bad luck. I had my last D&C in Aug 2013, TSH was 0.7 but unfortunately it is now 7.9 and my Endo wants us to stop trying till i get it in balance again. Both my obst. and Endo. think there is no reason with proper management that we will not get pregnant again & hopefully have a healthy baby. Hope this helps answer your question.

 

[Cariad Bach]

Lisa1985 - I'm so sorry to hear what you've been through. It must have been really hard for you. The more I read up it seems that there is a very common trend with TSH / underactive thyroid and fertility / miscarriage.

I'm going to see ENT specialist who claims he specialises in Thyroid disorders next week. The consultation is £200 for 30 min appointment.

I dropped my dose back to 100mcg until my body adjusts and within a day I have felt better. I'm going to introduce the new dose perhaps at the weekend.

Clementine - You too have had a rough ride. As this research I'm doing is fairly new to me I'm just curoius to find out as much info as I can.

I'm not sure that my GP is testing for T4 as he said that they don'y any longer as taking the Thyroxine doesn't make it accurate? I think I've got T3 results though...i'm interested to know if this is correct!?!

My GP thinks that the infertility 'could be' related to the thyroid problem and when I saught advice from my Gynae consultant she said that she doesn't need to see me about this and can be managed by the GP. I asked the GP about seeing an endo consultant but he dismised that idea! I just feel fed up that I can have been ttc now for 2 1/2 years and may be left waiting a long time just being under the GP who may continue to keep just tweaking things and not perhaps getting to the bottom of it - or perhaps another issue / not testing for. I've had such a rough experience so far with the NHS they do not give me much faith I must admit!

My GP thinks I'm wasting my time going to see this ENT specialist as he is thinking typical ENT stuff, but this chap has specialised and spent a considerable amount of time working abroad on Thyroid issues. I think he is worth a visit. Well I have my appointment on the 6th Feb so I'll let you know how I get on.

x

 

[Clementine]

Lots of luck with your appointment hope you get some helpful advice. My endocrinologist specialises in Thyroid and Diabetes which are endocrine related. The labs also stopped testing my Free T4 but my Endocrinolgist insists they do, as this indicates how much eltroxin is in your blood at my last test as well as my TSH going up to 7.9 my Free T4 dropped from 19 to 14.1 . I was taking 100mg Day 1, 100mg Day 2, 75g Day 3 and then repeat, now he has me on 125mg, 125mg, 100mg repeat. you need someone who understands the fine balance as its also harmful to push you to over active with too much Eltroxin TSH under 0.5 and very high Free T4. Once thyroid is treated properly it should not effect fertility. Eltroxin/Thyroxine crosses the placenta and is req'd for healthy development of baby in first trimester that is why my consultant has asked me to wait to TTC until thyroid back under control. Is ENT an ear nose throat specialist as I think an Endocrinologist who specialises in Thyroid Disease would be your best bet. Hope all goes well for you x

 

[Cariad Bach]

Hmm maybe I should ask GP again about referring me to Endocrinologist, he just dismissed the idea when I asked! This is what really worries me that they don't really understand and may be missing something. I've been so layer back with the whole thing, that now I'm becoming the opposite and keeping my own medical notes and trying to educate myself about it. I think I have to as my experience of the NHS to date hasn't been great to be honest. So many gaps, and stones left unturned....

The chap I've found is an ENT consultant but has specialised in thyroid hormone imbalance - worth a visit I thought. That's interesting about T4. I think I will be drawing up a list of questions when I have my app - try and get my money's worth!

I really didn't feel good on the 125mcg, dizzy and really drunk like symptoms. Feel much better I've dropped it back to 100mcg. I'm going to stick with this until I feel that I've got used to it then start the 125mcg perhaps early next week. I'm certainly not continuing to take it if it makes me feel worse - surely that can't be right! I tried to the this information through to GP whilst asking the receptionist at my surgery to send referral through and he was stood there and wouldn't say don't worry it's normal to feel like this and to continue - instead he said told the receptivity I would need to make an appointment which I understand but a quick answer to this would save both of our time as he was stood there and heard me asking the receptionist. I wasn't very pleased about this!

 

[Cariad Bach]

P.s. Thanks for the links Lisa1985 it's a great website!

 

[Cariad Bach]

Just checked my lab work and I have been tested for serum T4 with ranges of:

Before being diagnosed when having normal ttc bloods:
July 2010 - TSH 2.17 / Free T4 15.2
July 2012 - TSH 2.7 / Free T4 14.2

Upon diagnosis:
July 2013 - TSH 8.2 / Serum T4 12.7 (started on 50mcg)
Sept 2013 - TSH 2.43 / Serum T4 16.5 (dose increased to 75mcg)
Nov 2013 - TSH 0.16 / Serum T4 19.8 (dose decreased to 50mcg as dr suspected over medicated - symptoms of racing pulse / thyrotoxic).
Dec 2013 - TSH 0.16 / Serum T4 22.4 (had to force GP to increase dose back to 75mcg, felt terrible and going hypo. After taking this for few days started to feel great).
Jan 2014 - TSH 5.49 / Serum Free T4 16.4 (Felt complete hypo coming on, so dose increased to current 125mcg but taking 100mcg until used to dose). Felt really good since December's bloods and thought levels had stabilised, until this hypo attack.

Don't know what's going on. Any thoughts on my levels ladies?

I've been tested for B12 and that is ok.

 

[Clementine]

Hi Cariad, here is a good explanation re. thyroid issues I posted a link in this post, I hope you can open it.

http://www.pregnancyforum.co.uk/mis...roid-could-cause-infertility-miscarriage.html