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newly diagnosed and scared - hypo

Lolly127 profile image
26 Replies

good afternoon all ,

Some history . Massive health anxiety and 4 months post natal , baby girl via c section delivery . Healthy pregnancy other than my anxiety . Four days post birth I felt a shift in my HR , much lower at 47 even when I was panicked by this . I ended up in an ambulance as this Just isn’t notmal ! They ran an ecg and of course it was higher then as I was in an ambulance and worried , but now where near how it usually would be . Ecg all fine thankfully . Soon after I began to feel cold all the time , when usually I’m always warm . I let this pass as I’m a first time mum and thought it’s my body adjusting . In the end I came across postnatal tyroditis and asked for a blood test . Well she did my antibodies and they are sky high and today I’ve been informed my t4 has gone from 10.5 in jan ( 39 weeks pregnant ) to now 8.4 . So I’m classed as hypothyroid. But also mentioned thyroiditis. I’ve had crippling insomnia for a month and did question my mental health . Anyway ; he’s offered me medication or another blood test in 6 weeks and a referral to and endo . I’m really scared about it all and worried that it’s going to kill me , heart related anxiety sufferer . Hope someone can help : thanks

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Lolly127
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PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

High antibodies confirm your thyroid is being affected by autoimmune, this is known as autoimmune thyroiditis or Hashimoto’s but doctors just really refer to under active thyroid.  The autoimmune aspect isn’t treated. The low hormones are replaced.

See which antibodies were tested & exact range.  

A FT4 of 8.4 is very low by most ranges, but ranges vary so you need the range to interpret accurately. 

How much has your doctor started you on?  50mcg of hormone replacement levo is standard.  This isn’t like a medicine / drug is a replacement hormone and you need it.  

Your thyroid won’t be able to produce the hormone you need. 

You’ll likely need increases in dose, by 25mcg daily then retesting every 6 - 8 weeks. 

You also need your FT3 levels tested, this is the active hormone.  

Levo is T4 your body convert what it needs to FT3. 

Optimal Folate, ferritin, B12 & Vitamin D help levo to work well.

Usually hypothyroid is treated in primary care.  It’s unusual for suggestion of referral to endocrinology.

Are you in UK? Please put profile in bio. 

Many GPs say they or the lab can’t test FT3 & key nutrient so many use private options. 

Many find they need a complete test to make progress & private testing often only way to have everything tested once for a complete picture.

List of companies / discounts in uk.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.  

Choice of private companies & different options. Some offer thyroid function only other include key nutrients & thyroid antibodies.  

Recommend on forum that blood tests are carried out in consistent way.  Which helps when comparing results. 

 I remind myself of things to remember for blood tests with this checklist

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3-5 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously. 

D - Delay replacement dose on day of test (until after blood draw) 

E - Early morning appointment. (Book draw as close to 09.00 as possible)

F - Fast overnight.  This can have a slight impact.  Hydrate with lots of water

Lolly127 profile image
Lolly127 in reply toPurpleNails

Hey . So it was TPO antibodies , dr has asked me do I want meds or to test again in 6 weeks . Not sure why I’ve been given the option either

PurpleNails profile image
PurpleNailsAdministrator in reply toLolly127

Usually replacement is started if TSH above 10.  or FT4 below range.  Or the TSH is above range but below 10, consecutively, twice, 3 months apart. 

If it is borderline but with high TPO it’s likely levels will decline further so replacement can be offered.  

I would start replacement given that you have symptoms.  Anxiety is part of the symptoms. 

Lolly127 profile image
Lolly127 in reply toPurpleNails

thanks purple nails . Feel like my results are so wonky ! So t4 low at 8.4 but my tsh is lower end but normal at 0.56. I have read that usually tsh rises with low t4 , it’s so bloody complex

PurpleNails profile image
PurpleNailsAdministrator in reply toLolly127

correct, that TSH is lower on the normal end & not reflecting low thyroid levels. & that is unusual.

TSH is not reliable, levels can fluctuate & the TSH can be low, it might be that given time it will rise.

There is also the possibility there is an issue with the pituitary and the signaling is not working. Although with high antibodies too this would be a big coincidence.

Did you have great blood loss during birth? This can cause Sheehans syndrome.

The treatment would be the same ie replacing thyroid hormones, but if TSH is unexplained low, it might be best to get a record of why. You may have future issue getting adequate replacement if it is low. Doctors focus on TSH result and yours will need to look at FT4 & FT3 results.

Lolly127 profile image
Lolly127 in reply toPurpleNails

I lost 900ml , so a fair bit but not major loss . I think that’s why he’s referred me but I’m convincing myself my heart is going to pack up or it’s something serious and I’m going to leave my baby girl

Lolly127 profile image
Lolly127 in reply toPurpleNails

my tsh was 1.28 in January prior to delivery and as of last week is 0.56

HiRach profile image
HiRach

hello, I just wanted to reassure you. I’ve had postpartum thyroiditis after each of my 3 babies and have been taking levothyroxine since a few months postpartum with my first baby. Just wanted to send you support and say that it’ll all be ok x

Lolly127 profile image
Lolly127 in reply toHiRach

thank you . I’ve got myself so worked up over it . I thought I was going crazy and depressed . I do have anxiety so I didn’t know was it just my anxiety but part of me knew this was different . Did you have a lot of obvious symptoms x

HiRach profile image
HiRach in reply toLolly127

yes, mine started as hyperthyroid so fast heart rate, insomnia and hot and then developed into hypothyroid which left me feeling down and cold and gaining weight and my bones started aching.. It’s so difficult postpartum as you feel like a lot of the symptoms could be explained by the fact that you’ve just had a baby and your hormones/sleep is all over the place. I just wanted you to know that is does all settle down. I went on to have two more lovely children. The latest one is 7 months old and we are definitely done now!

Wishing you all the very best x

Lolly127 profile image
Lolly127 in reply toHiRach

I really appreciate this . And like you said I’m anxious by nature and just had my first ( and last haha ) so it’s hard to know . I had to tell them I thought I had it tho . It’s a shame they can be so dismissive sometimes x

HiRach profile image
HiRach in reply toLolly127

similarly the doctor was keen to diagnose me with postpartum depression but I asked for blood tests because although I was really tired and lacking energy it really felt like something else . It was the blood tests that showed I had postpartum thyroiditis.

Hoping you feel much better soon. My folate and ferratin were low every time too which doesn’t help you feel you’re best either. X

Steni profile image
Steni in reply toLolly127

I’m just writing to say that having just had a baby is such stressful event on the body and mind that everything will be adding to and feeding your anxiety. It’s all going to settle down I promise - I went through the same thing , all the same worries and it all got better - keep in touch and do your best to take all this excellent advice .

I wanted to reassure you too. I developed postpartum thyroiditis after my first baby. It never went away but I’ve managed with levo. It’s not perfect and I have ups and downs mainly because selfcare is hard as a parent. I’ve received amazing advice on here. I learnt about vitamins and other nutrients. I gave birth to my second baby over a year ago and the pregnancy was totally normal from a thyroid perspective.

Lolly127 profile image
Lolly127 in reply toHungryHungryHypo

thanks for your input , did you develop symptoms After . I mean it could have been altering during preg but I was so anxious about delivery to notice but now I’ve been asking myself am I depressed . But it all makes sense now x

HungryHungryHypo profile image
HungryHungryHypo in reply toLolly127

Yes my symptoms started afterward but I was actually diagnosed 2 years later during a hyper phase. I had also been feeling low and it definitely wasn’t PND (I had it the second time around and it feels different).

I was so worried too, especially because I wanted a second baby at some point and the internet scared me. I find this forum a great support as most people on here will give you advice AND the sources for their opinion. As an anxious person myself, I know we love checking the information we receive.

Lolly127 profile image
Lolly127 in reply toHungryHungryHypo

I’ve felt terrible as I’ve not been enjoying being a mum due to how terrible I feel . She’s an amazing little girl and I adore her . But when your so bone tired and drained , you just don’t have the energy then I feel terrible z

HungryHungryHypo profile image
HungryHungryHypo in reply toLolly127

Yes I remember the absolute exhaustion I felt too . In fact that is how I was diagnosed: I almost fell asleep at the wheel and called the surgery the following day.

mstp profile image
mstp in reply toLolly127

You are doing the absolute right thing asking all these questions and trying to work out what is going on. When my problems started after my baby was born we were moving house as well and, never having had anything worse than flu at that time, I didn't realise I was ill. I just thought I couldn't cope with all the changes. It wasnt until six years of hell for my family and many visits to my GP complaining about seemingly unrelated symptoms later that I was finally diagnosed. Good luck. You'll be fine and so will your baby girl.

HungryHungryHypo profile image
HungryHungryHypo in reply toLolly127

Oh and also a poorly thyroid can also mimic anxiety. If you are already of any anxious nature like I am, it will make things feel worse than they are.

SlowDragon profile image
SlowDragonAdministrator

Anxiety is extremely common hypothyroid symptom and will improve as you get thyroid levels improved

Request GP test vitamin D, folate, ferritin and B12 levels now

Also coeliac blood test

Standard starter dose levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose or brand change in levothyroxine

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

There’s almost 2 million people in U.K. on levothyroxine. 9 out of 10 of us are female. Thyroid levels often go wonky after hormonal changes……especially after pregnancy or around menopause

Anxiety suggests that you may have been borderline hypothyroid some time ……since long before pregnancy

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

susiemalc profile image
susiemalc

Hello, I also wanted to chime in to offer what reassurance I can. I have been hypo since pregnant with my first child and started on levothyroxine soon after her birth. I had an emergency C-section. I have always had a slow heart rate. Try not to worry. As you have high antibodies it makes sense to get started on levothyroxine and then you'll be on the road to recovery. Sometimes it's a difficult road, but for very many of us it's pretty straightforward. Try to treasure this time with your little baby girl (though I know the first few months can be tough - I certainly found them so). Knowing that you have a thyroid problem is a big step forward in regaining your health and wellbeing. You will find lots of help on here and life will be good again.

Lottyplum profile image
Lottyplum

Hello. I was in a similar position to you but 40 years ago after an emergency C section. Had 2 yrs of awful hypo stuff (and at one point thought I was losing it) but no one picked up on things as my bloods were ‘within range’! One dr even said he thought I was psychosomatic! No, 3 weeks later I was in hospital after seeing private consultant and after thyroidectomy for goitre, was diagnosed with Hashimotos. I’m now 74 and been on Levo only for more than 40 years, had a daughter (no C section) less than a year after my op, I’m healthy, walk every day, gardening and everything else I do myself (with hubby’s help) and we even help our children with DIY jobs! So, please don’t be frightened. There is so much help here because many GPS just don’t know. even at my age I am learning new things, all thanks to Thyroid UKs great team. Just keep in touch here as everyone just wants to help. Have a wonderful time with your new baby - enjoy being a mother. 😔

Thyroid problems can be triggered by stress-and having a c-section must be a different level of stress in my book! You seemed to be coping with the stress then wham! It's all happened at once! Im glad your GP is looking after you, though, and you should soon be feeling better when you are supplemented sufficiently. It does take a while to establish the right levels of support, as you ill have read in other's replies, but it is not life-threatening unless it is completely untreated. (You will also get free prescriptions now). Enjoy your baby girl, and keep us in the loop!

Lolly127 profile image
Lolly127 in reply to

my main issue is I have a bloody fear of medication . So taking it is going to create more anxiety , although it’s needed I know

in reply toLolly127

The thing is, if our bodies aren't functioning as they should-and as we know all sort of things can tip it out of kilter, partly because our usual daily diet is deficient in lots of nutrients for various reasons, taking meds to help rebalance things is a sensible move. Our bodies are like cars-premium ones need premium fuel, bangers can manage with less, but the performance will be relative! We are so lucky now with all the advances in medicine and treatments we can achieve the optimum health alongside a balanced diet. When you take your meds, just think how it is helping your body to perform optimally, and you need all the help you can get to keep up with your new little daughter! I have a son and a daughter, all grown up now, but it is one of the most rewarding and frustrating things at the same time you will be called upon to do! Think positive!!

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