Newly diagnosed - help!: I’ve recently had three... - Thyroid UK

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Newly diagnosed - help!

Aloha79 profile image
35 Replies

I’ve recently had three early miscarriages after falling pregnant very easily. During fertility check ups we discovered my thyroid levels are:

TSH 4.03 and T4 15.6.

These are the only thyroid related results they took.

I’ve been prescribed Eltroxin 50mg a day (Levothyroxine sodium).

I’ve lots of questions! I didn’t suspect a thing as I have a healthy weight (175cm and 61kg). But I’ve been utterly exhausted, brain fog etc. I put it down to working life/two kids!

Is it hopeless to continue TTC?

Can hypothyroidism cause hormonal acne (I’ve acne on my chin and lots of hairs - definitely don’t have PCOS).

Can it cause digestion issues (I had to go on FODMAP recently as lots of problems).

Is my medication enough?

Do any supplements help?

Should I do my best to reduce stress? I’ve been “powering through” flare ups. Possibly making it worse! I can negotiate working from home sometimes, cutting out the commute will help.

What started this? I’m a healthy 40, no alcohol, caffeine, I exercise etc.

Will I be on medication for the rest of my life? How to cope with flare ups? I was diagnosed with a form on skin cancer earlier this year (Bowen’s) - is there any relationship? Is my immune system in general low now?

Thank you for any help, I hardly know where to start!

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Aloha79 profile image
Aloha79
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greygoose profile image
greygoose

Is it hopeless to continue TTC?

At the moment, it's best to wait. Your TSH is too high, needs to be around 2 to conceive.

Can hypothyroidism cause hormonal acne

Most definitely! I escaped acne as a teenager but got it dreadfully at 45! Wasn't diagnosed until 55, but the acne cleared up when I started treatment for hypo.

Can it cause digestion issues

Indeed it can. Your stomach acid lowers, so whatever you do, don't take PPIs. You need something to raise acid. PPIs - which the doctor invariably prescribes - will lower it even further.

Is my medication enough?

It's a starter dose, and for that it's fine. You should get retested six weeks after starting it, and be increased by 25 mcg.

When you go for your retest, make sure your appointment is before 9 am, fast over-night, and leave a 24 hour gap between your last dose of levo and the blood test.

Do any supplements help?

If you need them, yes. Ask your doctor to test vit D, vit B12, folate and ferritin. When you get your results, best to post them on here for advice, because your GP won't know anything about them.

Due to the low stomach acid, hypos often have low nutrients, but you need optimal nutrients - not just 'in-range' for your body to use thyroid hormone efficiently.

Should I do my best to reduce stress?

Always best to reduce stress if you can, doesn't help anyone. It can make symptoms worse.

What started this? I’m a healthy 40, no alcohol, caffeine, I exercise etc.

Who knows! It's just one of those things. Could be caused by an autoimmune disease - have you had your antibodies tested? - but then the question would be: what caused the autoimmune issue? We'll probably never know. Could be genetics - has anyone else in your family got thyroid problems? Or, it could be due to an accident - whiplash, for example - or endocrine disruptors in food, cosmetics, water, etc. etc. etc. We live in a toxic age.

But, hypothyroidism is not caused by caffeine or alcohol, nor lack of exercise - in fact, too much exercise can make it wore - go easy until you get your levels up, just gentle walking or swimming.

Will I be on medication for the rest of my life?

Yes. But, don't think of it as medication. It's not a drug. It's thyroid hormone replacement, replacing the hormone your thyroid can no-longer make enough of.

How to cope with flare ups?

Who said there will be flare up?

I was diagnosed with a form on skin cancer earlier this year (Bowen’s) - is there any relationship?

Possibly not. But could be related to the treatment you received?

Is my immune system in general low now?

To know if your immune system is involved, you should have your antibodies tested - TPO antibodies. But, if your IS is just low due to your recent illness, it can be built up again. I'm not an expert on immune systems, I'm afraid. :)

Aloha79 profile image
Aloha79 in reply togreygoose

Thank you so much, this is brilliant.

It will be hard waiting to TTC as I have a low egg reserve! The fertility doctor said we should and can keep trying. They’re quite strict with thyroid levels, so she’s not unfamiliar with it. Unsure what to do!

Also, are iron levels affected? My iron has been low all year but now, while TTC, I can’t supplement. Luckily they’ve gone up loads thanks to diet, but they didn’t check ferritin.

Oh, and PS, I didn’t have any treatment for the Bowens apart from removing the site.

greygoose profile image
greygoose in reply toAloha79

The thing is, if you get pregnant again now, you risk having another miscarriage. And, surely, that must be devestating. Do you really want to go through that again? With low thyroid hormones, your body is not healthy enough to see a pregnancy through to term.

Iron levels are one of the first to be affected, usually. If yours is low, and you can't take iron tablets, could you eat liver once a week? Or liver paté? Or black pudding?

If you didn't have any treatment for the cancer, then there's likely no connection. :)

Aloha79 profile image
Aloha79 in reply togreygoose

Yes, am enjoying plenty of liver at the moment!

How long does treatment take to work?

greygoose profile image
greygoose in reply toAloha79

Do you mean levo? What exactly do you mean by 'work'? If you mean how long does it take to get the TSH down to a reasonable level, that is anyone's guess. The TSH is unpredictable.

If you mean how long does it take to make you feel better, there again, it's not easy to say. You should feel some effects after about 7 days, but you won't feel the full effects until after six weeks - which is when you get retested and the dose is increased, and the whole cycle repeats itself.

Feeling better on levo is a progressive process - but not a linear one. There are good days and bad days. But, once you get on the right dose for you, there should be many more good days than bad ones.

Don't eat liver more than once a week. It is high in vit A, and you don't want too much vit A.

Aloha79 profile image
Aloha79 in reply togreygoose

Thank you. No, can’t stomach it more often than that anyway! I was veggie for years!

I’m on Eltroxin, maybe it’s the same thing? I’m in Ireland, so different system here.

Thank you so much for sharing your knowledge. I feel very positive now that I know how I feel isn’t normal. And I don’t have to power through.

greygoose profile image
greygoose in reply toAloha79

Eltroxin is levo - L-Thyroxine - levo for short - T4 - the thyroid storage hormone, basically. Eltroxin is just the brand name, but the active ingredient is T4. :)

Aloha79 profile image
Aloha79 in reply togreygoose

Oh and PPS, why is my weight not affected? I don’t exercise that much (just cycling to work 3 days a week, half an hour each way).

greygoose profile image
greygoose in reply toAloha79

Not all hypos put on weight - the majority, yes, but symptoms are a very personal thing. There are over 300 hypos symptoms, so plenty of scope for everyone to have their own personalised selection. :D

Aloha79 profile image
Aloha79 in reply togreygoose

Really?!?! Goodness. Is there a comprehensive list anywhere?

Honestly, this all explains so much! I’m looking forward to how I feel when my levels are ok again!

greygoose profile image
greygoose in reply toAloha79

There's a good list here:

hypothyroidmom.com/300-hypo...

Aloha79 profile image
Aloha79 in reply togreygoose

It can be a root cause of skin cancer! Mine formed after my last pregnancy (son is 21 months) so I’d say they’re related.

I have a spread out range of symptoms.

greygoose profile image
greygoose in reply toAloha79

Oh, that way round, yes. I thought you meant did the cancer cause the hypo.

Aloha79 profile image
Aloha79 in reply togreygoose

I’m seeing my GP on Thursday, which blood tests should I insist on?

greygoose profile image
greygoose in reply toAloha79

At this point, what would be helpful would be antibodies, and a retest of all your nutrients.

Aloha79 profile image
Aloha79 in reply togreygoose

Thank you.

greygoose profile image
greygoose in reply toAloha79

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply toAloha79

Folate, B12, vitamin D and ferritin are all frequently low with hypothyroidism

B12 often linked to acne

Also request that GP test thyroid antibodies to see if cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's

Thyroid Bloods should be retested 6-8 weeks after each change in dose

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Obviously if considering pregnancy it's extremely important to have adequate B12 and folate

What vitamin supplements do you currently take?

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

MaisieGray profile image
MaisieGray

The fertility doctor said we should and can keep trying. They’re quite strict with thyroid levels, so she’s not unfamiliar with it.

NO, and NO, and being familiar is not the same as having adequate knowledge and understanding ........

Pregnancy is an overall drain in thyroid terms, even for a healthy euthyroid woman; and so with a deficit of thyroid hormones/dysfunctional thyroid, your health with be directly impacted if you were to be pregnant now. But perhaps the more important thing is that until the start of the second trimester or a little beyond, a foetus has no capacity to produce the very necessary thyroid hormones it needs for its brain, and other development - to the extent that a worse case scenario is the baby being born severely cognitively impared - so it draws on its mother's. Back in the day, such babies were referred to medically as cretins, and my second pregnancy was spent with my medical team worrying my son would be "born a cretin" and he was rushed off to be tested as soon as he arrived. I describe it as it was, to bring home the point to you, that the foetus draws its T4 aka thyroxine from its mother, and whilst T4 is generally considered largely an inactive pro hormone needing to be converted to the active T3, which it is, it also plays a key role in the foetus' brain development. So you need to have optimal levels of T4 for both of you; and once starting Levo it take c6 weeks for it to reach a steady state whereby the Levo you ingest is in equilibrium with what your body uses and/or eliminates; plus of course you need to reach the optimal dose for you the individual, beyond the starter dose you are currently on, so that steady state takes the same c6 weeks to reach, with each successive dose increase. So no, I would advise you can't and shouldn't keep on trying and I'm horrified TBH that your fertility Dr suggests you can - a health pregnancy is dependent on optimal thyroid hormones.

Aloha79 profile image
Aloha79 in reply toMaisieGray

Thank you. And yes, I’m starting to understand that. I’m now worried about this cycle as I saw the doc and started the meds around ovulation! What would happen if I fell pregnant? Another CP?

silverfox7 profile image
silverfox7 in reply toAloha79

Don’t worry about things that may not happen at the moment.

Aloha79 profile image
Aloha79 in reply tosilverfox7

Thank you, that’s right.

There’s a specialist endocrine obstetrician consultant working at the university where I work, so I can always contact him.

Aloha79 profile image
Aloha79

Thank you. She did, I passed her my GP results and said they all seem within range and she said “no, your thyroid isn’t, we want it to be no higher than 2.5”. She then prescribed the meds and said to retest in 6 weeks with my GP. But then said we could continue trying. I was ovulating that day (so we’d already tried). I’m a little worried, but my GP on Thursday will retest and we’ll see where to go.

Senorita_Squiffy profile image
Senorita_Squiffy

Hiya. This might sound like a strange and unrelated question... but do you have any amount of joint hypermobility?

Aloha79 profile image
Aloha79 in reply toSenorita_Squiffy

As a child yes, wrists I think, maybe also now. I’ve also a spotty, hairy chin which I think is related.

Senorita_Squiffy profile image
Senorita_Squiffy in reply toAloha79

It might be worth investigating the connection. I'm in a very similar position to you and was finally diagnosed with a condition called Joint Hypermobility Spectrum Disorder earlier this year. It can affect most of the body systems because it is a connective tissue disorder and be linked to autoimmune conditions. My digestive system was awful for many, many years. The low FODMAP diet mixed with SCD has helped massively after suffering with SIBO. From what I understand, miscarriages can also be related.

Aloha79 profile image
Aloha79 in reply toSenorita_Squiffy

Wow, I’ll certainly look into it. FODMAP helped me recently too, I’ve been able to reintroduce everything.

humanbean profile image
humanbean

MaisieGray 's post above is spot on about the possible consequences of getting pregnant with untreated thyroid problems.

I wanted to add that, as greygoose said in an earlier reply, being hypothyroid reduces stomach acid and thus absorption of nutrients is impaired.

The nutrients we normally discuss on here are :

Vitamin B12

Folate

Vitamin D

Ferritin (iron stores) and iron

Zinc and copper get mentioned occasionally. Hypos tend to be low in zinc and high in copper, although there have been very occasional mentions on here of people being the other way around. (Zinc and copper tend to have an inverse relationship - when one is low the other is high.)

Almost everyone on the planet is short of magnesium. Unfortunately, testing for magnesium is not very reliable. Most of us don't bother. As long as your kidneys are reasonably healthy then they will excrete excess magnesium.

There is a relationship between vitamin D and calcium. If your vitamin D is low and you start supplementing, it will increase your body's absorption of calcium. You want that calcium to go into your bones and teeth, not end up lining your arteries. In order to achieve that the body needs magnesium and vitamin K2. There is loads of info on vitamin K2 on the forum.

Do a web search for "Effects of low vitamin B12 in pregnancy", "Effects of low folate in pregnancy" and repeat for each nutrient I've mentioned. It matters to your own health as well as the health of any offspring.

If you have your iron and ferritin measured and suspect you need to supplement ask for advice on here first because iron is complicated and is poisonous in overdose.

Good luck. :)

Aloha79 profile image
Aloha79 in reply tohumanbean

Thank you- I’ll find my latest results and post them here, it was a relatively full blood count.

I’m well aware of all the risks, so fortunate to discover this thyroid issue so quickly. After two textbook healthy pregnancies (my youngest is 21 months old) I knew something was wrong.

I’d say I developed it after/during the pregnancy and that’s what caused my low immune system/the skin cancer. Joining all the dots, it all makes sense.

Aloha79 profile image
Aloha79

Ok, greygoose humanbean silverfox7 MaisieGray SlowDragon thank you for all your help so far!

Here are my latest blood test results, apart from the obvious thyroid, goes anything else look less than optimal? Normal range in brackets

TSH: 4.03 (0.3-4.2)

T4: 15.6 (12-22)

Sodium: 142 (135-145)

Potassium: 3.9 (3.5-5)

Creatine: 53 (45-84)

Urea: 5.6 (2-7)

Total proteins: 142 (135-145)

Albumin: 45 (35-50)

Bilirubin: 6 (0-17)

ALT: 12 (0-35)

Alkaline phosphatese: 60 (35-105)

Gamma-GT: 11 (0-40)

Calcium: 2.31 (2.15-2.55)

Phosphate: 0.88 (0.8-1.4)

Corrected calcium: 2.21 (2.15-2.55)

Cholesterol: 4.7 (0-5)

Triglycerides: 1.31 (0-1.7)

Cholesterol HDL: 1.27 (1.2-99)

LSL Cholesterol: 3.4 (0-3.8)

Neutrophils: 3.2 (2-7.5)

Lymphocytes: 2.5 (1.5-4)

Monocytes: 0.4 (0.2-0.8)

Eosinophils: 0.1 (0.04-0.4)

Basophils: 0.1 (0.00-0.1)

Haemoglobin: 14.3 (11.5-16.5)

RBC: 4.8 (3.8-5.8)

Haematocrit: 0.433 (0.360-0.460)

MCV: 90.2 (80-96)

MCH: 29.8 (27-34)

MCHC: 33 (31-36)

Red cell distribution: 12.7 (10.9-15.7)

Platelets: 233 (150-450)

Leucocytes: 6.3 (4-11)

Blood sugar: 4.9 (2.8-7.7)

SlowDragon profile image
SlowDragonAdministrator in reply toAloha79

Typical....thousands of tests...but very few are relevant

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Ask GP to test Thyroid antibodies, vitamin D, folate, B12 and ferritin

Or test privately

NHS rarely tests FT3 and refuses to test TG antibodies if TPO antibodies are negative

Bloods should be retested 6-8 weeks after starting on 50mcg Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Once you are on stable dose Levothyroxine and all four vitamins optimal

Links about TTC

verywellhealth.com/infertil...

Pregnancy guidelines - Levothyroxine needs increasing as soon as pregnancy is confirmed

See pages 7&8

btf-thyroid.org/images/docu...

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

Aloha79 profile image
Aloha79 in reply toSlowDragon

Thank you! I was at my GP this morning and they performed the recommended tests.

greygoose profile image
greygoose

Potassium looks a bit low. I don't done know much about any of the others. :)

tgirlnc profile image
tgirlnc

Have you tried acupuncture before. It can help immensely as a complimentary therapy for thyroid and getting pregnant if you go to a acupuncturist that specialises in these areas. At the very least it can help stablize your body. I would definitely insist that you get your antibodies tested and make sure you have a Free T4 and Free T3 test.

Aloha79 profile image
Aloha79 in reply totgirlnc

Thank you, I’ll do that at my GP on Thursday, and I found an excellent specialist acupuncturist so I was there on Saturday. I’ll go again!

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