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Thyroid antibodies >1000. Worried sick. Just started Levothyroxine for hypothyroidism.

(24 Posts)
Pat1ence Wed 04-Mar-15 19:33:54

I posted a few weeks ago with thyroid results indicating hypothyroidism found during pre-IVF bloods. Infertility specialist wanted me to wait another 6months for a retest (TSH 10.6 FT4 10.6). I am very symptomatic so went to see my GP 2 weeks ago, she wasn't very understanding but agreed to retest at 8 weeks rather than 6months.

Last week I received a letter from GP. She said on reflection and having read the list of symptoms I'd taken her, she would like me to collect a prescription for 100mcg of Levothyroxine as soon as possible and have a blood test for thyroid antibodies. Not sure why she had a complete change of heart, maybe she liased with an endo or had a browse at my medical history, I've been symptomatic for years.

She called today, only 36 hours after my blood test, and informed me that my antibodies are over 1000, my TSH has gone up even more and she is referring me to an endocrinologist as a matter of urgency.

I am worried sick. Could it be thyroid cancer? Or is it just a thyroid under attack by my immune system? I have a family history of Hashimoto's but not thyroid cancer (I'm 31 if that makes any difference)
We've obviously postponed IVF but I'm ever so scared about the state of my fertility now. Is this treatable? Will I ever be able to conceive? Will I feel well again?

PoshPenny Wed 04-Mar-15 20:38:46

It's hashimotos that the antibodies diagnose, thyroid cancer is very rare, and not diagnosed via antibodies to the best of my knowledge. I've just had a thyroid cancer scare, and it was all about a nodule on my thyroid that they didn't like the look of on ultrasound, so wanted to do a biopsy on it. Anyway, I haven't got it. Good luck with the treatment and I hope it works out for you.

sanfairyanne Wed 04-Mar-15 20:54:03

hypothyroidism is really common and there are lots of women on here who have hypo and had successful pregnancies. once you are treated, your fertility might well improve by itself. i dont understand why your fertility specialist left you with tsh over 10 though but good you are now being treated

when you are pregnant you need an immediate increase in meds btw

Pleasemrstweedie Wed 04-Mar-15 20:57:42

Sounds like Hashis. Don't panic, 1000mcg is a proper starting dose and you should start to feel better quite quickly.

A strict gluten free diet will sort out the antibodies.

Referral is a good idea with a view to getting you stable at the right level as soon as possible do you can have a baby.

On the fertility died you might want to talk to a charity called Foresight.

The fact that your GP has grasped this in the way she has is actually positive news.

Pleasemrstweedie Wed 04-Mar-15 20:58:17

So ... Side

helzapoppin2 Wed 04-Mar-15 21:54:08

My thyroid antibodies were also over 1000. My endocrinologist never made any fuss about it. Ive been on 125 mcg for a while now and feel fine.

HazleNutt Wed 04-Mar-15 21:58:56

do you know what's causing the infertility? Because if not, TSH over 10 could easily be it. For women TTC, it's recommended that TSH should be under 2. I'm not a doctor, but it sounds really odd that your specialist just wanted to wait and retest with such TSH, and not treat it.

Levothyroxine works fast, you should start feeling better in the matter of weeks, if not days.

SirVixofVixHall Wed 04-Mar-15 22:18:50

I'm on a strict gluten free diet (probably coeliac) and my antibodies are always high, so I don't think that it works to lower antibodies tbh. Glad you are at least getting taken seriously now op.

Pat1ence Thu 05-Mar-15 08:28:39

I have endometriodis but the fertility specialist removed it two years ago. Or so he says, I still have pain but that's for another thread! Other than that, all tests normal fertility wise. We are 'unexplained'. This could explain it!

Thank you for putting my mind at ease, I know thyroid cancer is very rare, I got myself in a panic last night. I'm trying to stay calm as there's nothing I can do until I see an endocrinologist. Reading about it seems to be giving me conflicting advice and contradictory 'facts'.

Is my immune system attacking fertilised eggs/embryos as well as my thyroid? Could that explain the unexplained infertility?

HazleNutt Thu 05-Mar-15 13:30:35

this might be interesting:
Of 394 infertile women, 23.9% were hypothyroid (TSH > 4.2 μIU/ml). After treatment for hypothyroidism, 76.6% of infertile women conceived within 6 weeks to 1 year.

Pat1ence Thu 05-Mar-15 15:41:54

That is very interesting HazleNutt, thank you.

I've done some more reading this afternoon and got some ideas of supplements I can start taking. I tried to go gluten free a few months ago, unintentionally lost a stone so was told to eat normally. Think I'd need a dietician to go gluten free safely. My TSH has gone from 10.6 to 11.5 in 4 weeks. I'm hoping the thyroxine works quickly.

Pleasemrstweedie Thu 05-Mar-15 16:24:39

You really need to get your helpful doctor to test vitamin B12, folate, vitamin D and ferritin, before you start taking supplements. These are the ones you need to have optimal in range to support thyroid function. Selenium (three brazil nuts a day) will help conversion of thyroxine to the active hormone that you actually need.

Gluten free is a must for Hashis because the antibodies feed on gluten molecules. If you can’t manage it alone then ask for a referral to an NHS dietitian, although you may find he or she might not have much of an idea judging by my experience. Was the loss of a stone leaving you massively underweight or had you just got rid of gluten-induced bloating?

Pat1ence Thu 05-Mar-15 16:53:00

I've always been naturally slim, I have never gained weight easily. I don't have a huge appetite. May seem a blessing to some but is a nuisance lately as gluten free pushed me almost out of my healthy BMI. I feel overwhelmed! Where do I start?

Pat1ence Thu 05-Mar-15 16:54:59

As an aside, is this why my singing voice has gone? Could the thyroid inflammation (I'm assuming there is some, nobody has examined it) have changed my voice?

sanfairyanne Thu 05-Mar-15 17:20:54

i dont know but my singing voice has gone too sad

SirVixofVixHall Thu 05-Mar-15 17:59:19

I sing and I am worried my voice is changing. What happened to your voices op and sanfairy?
OP that shift in TSH could have just been the difference from one day to another, it isnt a static thing, and goes up and down through the day. Either result is bad though.

iliketea Thu 05-Mar-15 18:02:17

Look up the NICE clinical knowledge summary on hypothyroidism pre-conception and during pregnancy. I discussed with my GP, because recommended tsh is below 2 for the best chance of conceiving

iliketea Thu 05-Mar-15 18:05:06

Sorry, posted too soon. I've had trouble conceivingthe 2nd time, and I took the information to my GP and he's finally increased my thyroxine. The range for "normal" tsh is wide in the UK compared to other it's ahold thing oh are being referred to an endocrinologist.

Pat1ence Thu 05-Mar-15 19:00:39

Ah, ok, I didn't realise it could fluctuate like that. Learning a lot lately.

My singing voice has pretty much vanished. No higher register at all, no falsetto, cant sing anything in tune, not even nursery rhymes. I sound like my voice is breaking. It strains my throat and hurts for days afterwards. Even talking too much causes me discomfort.

SirVixofVixHall Thu 05-Mar-15 19:29:32

That is terrible! I sing in a small choir, it is a huge joy in my life and the only thing I do away from my children that is just for me. If my voice goes I think it would really break my heart tbh. I hope you get it back Pat1ence, when your medication is all sorted.

sanfairyanne Thu 05-Mar-15 19:38:36

my voice is also v limited range n sounds a bit like it is breaking. it is sad

SirVixofVixHall Thu 05-Mar-15 20:07:02

Sanfairy has that happened even though you are on thyroxine? <very worried now>

LuckyLady79 Fri 29-Apr-16 19:03:18

Hi Pat1ence, my IVF doctor just sent me home with a prescription for 150mg levothyroxine and said she couldn't do the IVF this cycle as it was too high of a risk in miscarriage. I had the exact symptoms as you, back, knee, hips aching all the time and I'm a yoga teacher of 7 that rang alarm bells! I'm positive this dosage will put it at bay..she's also referred me to an endocrinologist to visit every 3 months for a full check up. How are you getting on??

TopazRocks Fri 29-Apr-16 19:43:42

I see this is a zombie thread but I'll post anyway.

LL, I hope you do well on the extra thyroxine. I had Hashi's diagnosed a decade or so ago, but recently went to GP as I had all those pains. I have other AI conditions too so had no idea what was going on! A thyroid check showed I needed an increase in thyroxine after being on same dose for a good few years. My aches are starting to improve, after about 3 weeks on the extra amount, so i hope yours do too.

Re-singing voices, i noticed my natural contralto had changed to 'hoarse' while I was trying to get diagnosed (it was a vv long haul). Only with hindsight did I realise I could sing again once on a stable dose. I wasn't in a choir.

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