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Anyone know anything about thyroid disease?

(22 Posts)
SpanielFace Thu 18-Dec-14 18:56:17

I developed an underactive thyroid after having DS. He was almost a year when I was diagnosed, but looking back the signs had been there for much longer, but I'd written them off as having a newborn, although I was starting to worry that I had PND. Then I found a lump in my neck. Bloods showed high antibodies, high tsh and borderline-low T4. Biopsies showed nodular hyperplasia. I was started on thyroxine, 50 micrograms initially, but increasing to 75 then 100.

I conceived again in January, about 8 months after diagnosis. In pregnancy I was under consultant care and my thyroxine dose was increased to 125. Sadly I lost this baby - another boy - after a missed miscarriage discovered at my 20 week scan. My consultant didn't think my thyroid was the cause, just " one of those things".

Since then (about 7 months ago) I've been tired, sad and "foggy" again. I thought it was all do to with grief, and that it would pass. But I noticed that my goitre is bigger, and the other side of my neck is starting to enlarge too. We've also been ttc again since August with no success, which is unusual for me as previous 2 babies were conceived in the first month of trying.

Does anyone have any thoughts or advice? I've made a gp appointment but next available non-urgent appointment was late January.

Is it likely that my thyroxine requirement would continue to increase 18 months after diagnosis? Also, is it possible for nodular hyperplasia to become cancerous at a later stage?

So fed up with this disease. I used to be a healthy, fit size 12. Now I'm a sad, tired, grieving size 16. sad I desperately want another baby but scared of going through another late miscarriage.

RockinD Thu 18-Dec-14 19:26:14

Sorry for what you have been through.

Yes, your requirement for meds can change for all sorts of reasons, including being heavier.

There are strict NICE guidelines for treating hypothyroidism in pregnancy and if you are TTC.

Do you have your latest test results, with the reference ranges?

SpanielFace Thu 18-Dec-14 19:48:11

No, I don't. I've never been given the actual values, although GP did go through the results quite thoroughly when I was first diagnosed.

I'm no heavier than when first diagnosed, in fact slightly lighter, although not by much. I was heavier in the summer after losing DS2, but that was mostly down to comfort eating. I've lost the extra weight that i gained, but have got a bit stuck. I used drop weight so easily when I was younger, but not now. BMI is about 30 so really do need to lose more. Pre-diagnosis, I was always in the healthy range. My eating is more disordered since having DS though, I don't think it's entirely thyroid related.

Last blood test was June, 6 weeks after losing the baby. Can I request a test if ttc? I don't think I'm due to be called back until next June, although I'm assuming MW would test when I booked in if/when I conceived, which is what happened last time.

Thanks for your advice.

RockinD Fri 19-Dec-14 11:17:36

I would suggest you go back to the doc and tell him you want to TTC and ask him to give you a full thyroid test. This time, make sure you get the actual figures and the reference ranges from him.

If you ask for a print out from your June test - that might give you some useful information. The NICE Guidelines say your TSH needs to be under 2 if you are TTC or PG - just being in range will not do in this situation.

I suspect you may be under- medicated and if you have a goitre that is growing, you certainly need sorting out, irrespective of wanting to have another baby.

SpanielFace Fri 19-Dec-14 14:15:52

Thank you, that's really helpful.

Why would goitre continue to grow? Is that not normally something that would be expected? I still find it odd that I've developed one - my mum has an underactive thyroid and no goitre.

naty1 Fri 19-Dec-14 23:44:25

I agree with PP.
What ive done for ive is get tsh under 2.5 for ttc.
14dpo got a bfp my thyroxine was increased by 25mg a day.
Tsh that week 2.5
4wk later 0.91
5.5 wk later 0.25 so as i started on a low dose im probably over medicated now.
Dose needs to be increased as soon as possible after bfp
Unfortunately thyroid disorders increase mc risk.
Request a blood test asap. It gets worse in winter anyway.
I just took control and had a test every time i started a new ivf.

freelancegirl Sat 20-Dec-14 00:08:26

Hi there, I've had thyroid disease (under active/ hasimotos) since I was 21 and am just 40 now. I started off needing only 25mcg (although I have my suspicions I needed more) of thyroxine and now, pregnant again, am on 150mcg. Gradually my dosage has needed to increase over the years.

First of all you need to learn all about normal ranges as unfortunately some doctors work to different ones. Thyroid patients often have to become their own experts unless you're lucky and get a really good doctor who is up to date with the research.

I feel sluggish if my TSH is much over 2. At 3ish I feel like I'm walking through treacle, but some doctors think that's still in the normal range. It's not, as many more progressive doctors now agree. For more on this read Mary Shomon online and also the charity Thyroid UK.

For ttc and pregnancy you definitely want a TSH of under 2. I don't want to make you worry unduly about further miscarriages but also ask to be tested for raised thyroid antibodies. There is a theory that people with raised antibodies and therefore autoimmune condition like Hashimoto's thyroiditis might be more prone to something called a high level of natural killer cells which are thought by some to attack the foetus as a foreign object. I've had 5 miscarriages and was then successfully treated for this at the Miscarriage Clinic who specialise in this treatment. It involved taking steroids to help suppress the killer cells and I've got a 2 1/2 year old and am (all going well!) having my second child next week.

Chances are you will be fine with the next pregnancy as miscarriages are unfortunately very common, but it's just something to bear in mind if you do have raised antibodies and/or do go on to have another miscarriage.

Thyroid patients are often also low in Vitamin D and also selenium so it might be worth getting these checked and then taking a supplement. Both of these have been shown to be really important in terms of pregnancy. My miscarriage specialist recommends an additional 50ug of vitamin d3 on top of what I take in pregnacare plus omega 3. He also recommends a low dose aspirin which, again controversial reports, has been shown to help with miscarriage prevention.

Happy to answer any questions if you have any, I've done a lot of research into this area.

SpanielFace Sat 20-Dec-14 07:50:05

Thanks. I spoke to DH last night and we've decide to delay TTC until I've got my health back on track and also lost some weight. It's a hard decision as I am so bloody broody, and still feel like the only thing that is going to help me mentally heal from losing DS2 would be another baby, plus I really wanted a small age gap and DS is now 2.4, and there is also the fact that I'm not getting any younger (35 next year).... But I think this is more important.

I've been on my GPs website and booked an appointment for jan 7th, which is the first available one, and sooner than the one the receptionist gave me on the phone! It's with the gp I saw when I was initially diagnosed, who was very helpful before. Is there any reference anyone can give me to WHO guidelines, or something stating that TSH should be below 2 when TTC? I want to have all the information in case I'm met with any resistance (although she was very helpful before, so I hope she will be open to discussion). I do wonder if I'm under medicated. I don't feel as ill as before diagnosis (I had all sorts of weird symptoms then - muscle cramps, joint aches, constantly cold as well as the lethargy and tiredness) but I definitely don't feel myself.

Freelance, that's interesting about antibodies, although frightening too. I know MCs are sadly common. The thought of going through another miscarriage is awful, particularly another late one, and that scares me about getting pregnant again. I feel for you, having had so many - it must be heartbreaking. Hope all goes well next week. My antibodies were definitely increased when I was first diagnosed, they were "very high" in the words of my GP. No one ever mentioned to me that this could be a factor in miscarrying. I'll discuss with my GP.

I've also just got a letter through calling me for a repeat biopsy on my thyroid in 2 weeks! This was a surprise - I was expecting to be called for a repeat ultrasound at some point, I was told that they would do this annually to monitor growth, but I didn't think they would biopsy it again. I'm not looking forward to it (it was far more painful than I'd expected last time!) but it will at least tell me if anything has changed, because the fact it is growing is on my mind still.

Thanks to everyone who has replied.

freelancegirl Sat 20-Dec-14 08:29:47

If you have raised antibodies, as far as I know, they always stay raised. It just means your thyroid issue is an autoimmune one like Hashimoto's. Glad your symptoms are a bit better. I always find that weight training is better than cardio to lose weight when you have thyroid issues.

Your GP might not know the connection between antibodies and miscarriages/high level of natural killer cells. Personally I would go privately if you could get together the cash and get tested for natural killer cells by someone like the Miscarriage Clinic sooner rather than later. If you don't want to delay due to various reasons (don't worry about age - you're still very young yet compared to a lot of people going through this who have had successful pregnancies!) I would look into that soon just in case your GP faffs around with your levels and isn't one of the rare up to date ones!

Sorry, I'm not anti GP but just that having had this condition for over 20 years and helped a lot of people with it too (I'm researching it as part of my work) I know how it often goes.

If you want to know more about natural killer cells come onto the immunotherapy threed in conception. I will link to it in a minute.

Sorry I can't help you with the biopsy, I've only ever had ultrasounds as haven't had any nodules although my goitre can go up and down.

freelancegirl Sat 20-Dec-14 08:33:33

Oh by the way, once you are aware of what levels you feel best at thyroid problems don't affect my life at all. Just taking medication every day which you soon get used to. So please don't worry about that part of it. I think that's why the miscarriage were a suprise as I didn't know the connection either. I thought that the only potential problem was if my thyroid wasn't in normal range then ttc might be difficult. But as it was my thyroid has been kept below 2 and ttc was easy - it was keeping them that was a problem. A problem easily solved with treatment (quite simple treatment including steroids) once I had found the right people.

gd1976 Sat 20-Dec-14 08:34:29

I was diagnosed with under active thyroid 1.5 yrs ago, also suffered from mis carriage. I then conceived again and once my ds2 was born I was diagnosed. My thyroid levels had continuously gone up over a period of 10 years but had gone completely un noticed by the doctors.! Anyway, my story is so long but in a nut shell I felt awful on thyroxine, worse than my thyroid symptoms alone and eventually in a desperate attempt I very sceptically went to see a naturopath on a friends advice. Was not keen and thought would be a waste of money but equally desperate. She told me I was so dificient in so many hormones, nutrients as a result of my thyroid not working properly I was out on a cocktail of supplements and lots of thyroid and adrenal support as well, but all in a natural form. Low and behold the proof was in the pudding as I waitied 9 months for my next blood test at the docs as I was too scared to tell them I wasn't taking the thyroxine that they'd supplied any more. Anyway, to my amazement I had a normal functioning throid in the normal range!!! Could not believe it.
I'm sure this does not work for everyone and there are so many different causes of throid disease, so i can only tell my story, and I do not know enough about it to recommend it to anyone else, but I can totally relate to that awful feeling that thyroid disease makes you feel. I used to associate my tiredness like coming round from an anaesthetic at all times, and now all that is a distant memory!!

freelancegirl Sat 20-Dec-14 08:34:38

Link to aforementioned thread, sorry you'll need to copy and paste.

RockinD Sat 20-Dec-14 09:33:55

Ï haven't figured out how to do links on this tablet thingy, but if you google NICE Guidelines and hypothyroidism you'll get the info you need.

naty1 Sat 20-Dec-14 10:12:35

I think gps dont acknowledge that its a progressive illness certainly for me.
So if they say oh its ok your tsh is 4.0 (limit is 4.2) but then dont test for a year you can have really progressed to say 6 by then as thyroid having to work hard.
Possibly if maintained at around 2 it wouldnt get so much worse so you feel awful by the next test.
I get the feeling thyroid mc is often before the baby makes its own hormones so say 12w.

freelancegirl Sat 20-Dec-14 10:37:30

You're right, many GPs don't realise it's progressive. I've got to the stage that I self manage. I have thyroxine in doses that I can slightly alter if I need to, depending on the blood tests. I guess people are worried you will take too much and go over active but when once you've been over active once and see how awful you also feel when over active you soon realise it's not a good thing!

Later miscarriages can happen if you've also got a high level of natural killer cells unfortunately, not saying OP definitely does but they are connected to thyroid issues.

Also many of us feel awful if our TSH is as high as 4.2 even though a lot of gps will think anything under 5 is normal! Mine went up to 3.8 recently and I felt like I had a head full of cotton wool and was walking through treacle. I've spoken to hundreds of women with thyroid issues and mainly find that w TSH I between 1 and 2 us best.

naty1 Sat 20-Dec-14 11:09:23

I guess what annoys me is that if it was them (the gp or a dr). You can guarantee they wouldnt put up with 4-5. And they would be testing t4/3 and antibodies. Gp told me that wouldnt affect whether i could get medical exemption and as its only gone up to 4(on meds) i cant have 1, until it goes over, well as i was trying to keep under 2.5 thats crap. So ive been paying all year. Then i get pg and a different gp says you should gave had an exemption (prob as itll only get worse)

clarella Sat 20-Dec-14 12:40:03

Hi my experience is very similar to freelancegirl. I've also had it since 21 and now 38.

I too need to be around 1, any higher and I really notice.

Vit d, iron (ferritin, your iron stores), b12 and folate are important - I've learnt to my cost recently, as low thyroid affects muscle strength and recovery, hence some of the fatigue, as well as the brain (fog). Muscles need these things to recover/grow etc.

I've recently seen an endo. He did say thyroxine is very weight dependant. It's also affected by other things - iron, calcium and magnesium. Also I've discovered, some medications such as omeprazole and sertraline. So take on its own.

I scrutinised the nice guidlenes when ttc and made sure I was around 1.

A goitre might grow if your thyroid is trying to produce more thyroxine. This needs to be addressed.

The bmj booklet by Anthony toft is very good to wave at gps - it clearly states that most feel best at the lower end of the range for tsh and higher for t4.

It's very very important ime that you keep records of your ranges. I believe in currently suffering terribly from seeing a few gps who decided 2.5 was fine, and recovery after 18 years seems harder on the muscles than it once was.

Sorry if I've repeated others posts I only read a few!

I actually found joining the British thyroid foundation very helpful too. They've had a shake up of directors and are becoming more pro active too and pro t3.

clarella Sat 20-Dec-14 12:45:50

I was recently told by an endo that full suppression, as long as you feel well is fine. There's more risk of osteoporosis but I had a bone blood test and it was good. So I'm going to aim to be around 1 from now on, with his blessing.

Ive also found over the years that focussing on keeping strong is very helpful. I've found ashtanga yoga (when I got into it) very good as well as swimming to keep my heart fit. Then I later did a bit of jogging too.

I know from experience that when I had a slight dip in medication, recovery was much quicker due to having strong muscles previously.

It particularly can affect the proximal muscles which yoga does help.

clarella Sun 21-Dec-14 07:38:14

Naty1, 4 is too high if you have confirmed hypothyroidism. Drs should go on how you feel NOT the numbers. In the last 18 years I've slowly seen a change in this.

I attended a talk by a consultant on pregnancy and hypothyroidism; key points were it's very important to be on vit d and have Tsh below 2 prior to conception - she also mentioned iodine. Things like pregnacare or boots own cover that. Knowing what I now know about vit d I'd take a wee bit extra on top. Iodine is easily found in your recommended daily dairy, esp yoghurt, as well as fish.

Tsh must be kept low in the first trimester; this is when it's going to go up. Baby makes own hormones around 23 weeks ish (need to check) and so needs mums during first two trimesters. It's not just about miscarriage; it's also linked to cognitive development (though only mildly)

She commented that in ancient Egypt women wore a tight neck band as a pregnancy test; when the band tightened it indicated pregnancy as the thyroid grows naturally in normal pregnancies to accommodate the baby's needs.

But clinically, it's all in the nice guidelines.

my pregnancy was further complicated by the fact I was on a brand of thyroxine which was dodgy but I'll not raise my bp with that one

SpanielFace Mon 22-Dec-14 20:25:20

I just feel so low at the moment. I really hope it is just that I'm undermedicated. I did a depression self assessment quiz online, and it said that I was highly likely to have depression, but I've felt like this before before I was diagnosed with hypothyroidism. So I'm thinking thyroid issues are maybe easier to fix than depression?! I'm just so bloody tired all the time, and everything feels like too much effort. I've ordered myself the Anthony toft booklet to read. I think I need to get to grips with this illness so I can argue my case with the gp if needed.

Lots to talk to the gp about in 2 weeks, anyway. I think delaying ttc is sensible right now, but it makes me so sad.

SpanielFace Mon 22-Dec-14 20:25:50

I just feel so low at the moment. I really hope it is just that I'm undermedicated. I did a depression self assessment quiz online, and it said that I was highly likely to have depression, but I've felt like this before before I was diagnosed with hypothyroidism. So I'm thinking thyroid issues are maybe easier to fix than depression?! I'm just so bloody tired all the time, and everything feels like too much effort. I've ordered myself the Anthony toft booklet to read. I think I need to get to grips with this illness so I can argue my case with the gp if needed.

Lots to talk to the gp about in 2 weeks, anyway. I think delaying ttc is sensible right now, but it makes me so sad.

SpanielFace Mon 22-Dec-14 20:26:42

Sorry, I've no idea why that's posted twice!

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