Thyroid UK
89,291 members103,791 posts

I really need some support - please :-(

I need some advice and reassurance. I was diagnosed with Hashimoto’s ten years ago. Never been medicated as the doctors always say I’m within range even though I’ve had results out of range at various points. My TPO antibodies have been as high as 1500 and I’ve been temporarily hyperthyroid as well as hypothyroid.

I’ve recently had a baby. During pregnancy my symptoms improved drastically and I was emotionally calm and grounded. Then I had the baby and my symptoms are back with a vengeance. I was consultant led during my pregnancy to monitor my thyroid and the endocrinologist arranged to see me at 4 months postpartum to check my thyroid again. I had the blood test and she said it was normal. My TSH was 0.9 (0.3-3.0) and my free T4 was 16 (12-22). My Free T3 was 3.8 (3.8-6.4) so it was the very bottom of the range. The endocrinologist said that’s fine. I told her all my symptoms:

Hair loss

Weight loss (I weigh less now than I did before my pregnancy!)

Palpitations

Bowel issues

Severe on/off knee, hand and wrist pain

Over heating at night

Severe mood changes

She said that my symptoms were not my thyroid and I needed a cardiac check for the palpitations and to discuss postnatal depression with my doctor. I went back to my GP and spoke to her. She ordered an ECG which was normal and asked me about my emotions. I explained that I’m up and down, I’m sensitive and moody and it has caused arguments with my husband. She said that it could be postnatal depression. I don’t believe it is! If it’s depression why do my knees hurt so much that at times I can barely get up off the floor? If it’s depression why do I alternate between diarrhoea and constipation? If it’s depression why do I get pains in my thyroid. I have a 3cm module which has been biopsied clear and a Hashimotos diagnosis from raised antibodies.

I’m now terrified that this is a psychiatric issue and that maybe I’m on the verge of a breakdown or something. Any thoughts?

30 Replies
oldestnewest

Your LOW T3 will be causing your symptoms. Please have B12 - FOLATE - FERRITIN - VIT D - tested ASAP. if Ferritin is low in range then you need FULL IRON TESTING. Palps can be caused by low vits and minerals and of course low T3 ...

Low VitD can cause painful joints too. Low B12 can also cause neurological symptoms. Do not accept AD's.

2 likes
Reply

Thank you! Do you consider my T3 low even though it’s technically in range? If all my vitamin tests come back ok should I assume she’s right and it’s postnatal depression?

Reply

It is where you are in range that is key - and it needs to be higher for you to feel well. Yes I do consider it low..

I very much doubt your vitamins will be good and don't allow your GP to say they are FINE when s/he means in range. B12 needs to be around/over 500 - VitD 100 & Ferritin and Folate mid range. Docs receive little or no training on vitamins.

The brain has more receptors for T3 than any other body part - the gut next. So when T3 is low there is simply not enough to go around !

1 like
Reply

Thank you! It’s good to know where my B12 etc need to be.

1 like
Reply

Autoimmune thyroid disease, also called Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

As Marz says, it's essential to test vitamin D, folate, ferritin and B12.

Low vitamins are extremely common with Hashimoto's

holtorfmed.com/vitamin-d-au...

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

With autoimmune disease symptoms tend to improve while we are pregnant and temporarily get worse after giving birth

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

Reply

Thank you! My main concern is the emotional symptoms as I seem so up and down and am worried that it’s aomething more serious. In my most recent set of bloods the Gp is testing for celiac disease

Reply

Good that GP is considering the gut connection.

If coeliac test is positive then you need to stay on gluten until endoscopy. Should be max 6 weeks wait

If result is negative don't assume you won't benefit from strictly gluten free diet. A very high percentage of Hashimoto's patients find it helps, sometimes significantly.

Good idea to test a TPO antibodies before you start. Measuring annually or after 6 months to see if antibodies have reduced

Changing your diet can seem daunting, but if you find it helps reduce symptoms it makes it easier to stick to

1 like
Reply

No, no, it isn't a psychiatric illness. And your GP should be ashamed of herself for scaring you like that! It's disgusting!

Your symptoms - all your symptoms, I would imagine - are caused by that low T3. Your endo ought to be ashamed of herself, too! But I don't suppose she knows anything about T3 or symptoms. None of them do. They only know about TSH, and yours is good. So, they do not have the education to deal with anything else.

But, with a low FT3 like that, you are hypo. It's low T3 that causes hypothyroidism, not high TSH. High TSH is the result of hypothyroidism, not the cause. But, doctors just don't understand that. And, in any case, having Hashi's means that you cannot rely on your blood test results, anyway, especially not the TSH, because it will lag way behind your other results, which lag way behind your symptoms. This is the hypo conundrum. And, having just has a baby will complicate things no end.

So, what can you do to help yourself until your hormones sort themselves out and show you to be hypo??? Well, you could try a 100% gluten-free diet. That helps a lot of people feel better because with Hashi's, you often become sensitive to gluten - and it might lower your antibodies, which could be causing symptoms. And, you could take some selenium - although, I don't know if that's recommended if you're breast-feeding? Might be an idea to do some research on that. But, selenium might also lower your antibodies and help with your conversion - because you are a poor converter, I'm afraid, like most Hashi's people.

Also, as your doctor to test your vit D, vit B12, folate and ferritin. As you're hypo, these could be low. And low nutrients cause symptoms, too.

Don't take it personally about your doctors telling you you are depressed. They try to convince all of us that we need to take antidepressants, because they get funding points, or something, for prescribing them. Doctors are little more than legalised drug-pushers, these days. They don't like anything natural - or perhaps I should say non-drug - like thyroid hormone replacement, because they make the patient well without making Big Pharma rich. Remember, everyone has their own agenda, and your agenda should be you! Don't talk to doctors except to tell them what you want, and you want it now! Instead, do your own research and ask questions here. And, keep an eye on your thyroid, test as regularly as you can, because at some point, your TSH is likely to go up to a point where they can no-longer deny you have a problem. So, be ready for them! :)

4 likes
Reply

Thank you grey goose. This is very helpful. I’m so worried that I’m going crazy. My marriage is suffering due to my irritability and mood swings and I have joint pain and bowel issues constantly. I feel like my mood can change daily. Is that normal? I’m terrified my latest thyroid tests will come back normal again

Reply

Yes, it's perfectly 'normal', and you're not going crazy. No way! Perhaps you could get your partner to have a read on here? If he saw, first hand, all the misery that this disease causes, he might be more understanding. But it's difficult for someone that has never experienced it to understand what it's like. There's not another illness like it, because it encompasses everything! There's not an area of your life or your body that it doesn't affect. It is hell on earth until you find the right dose of the right treatment for you. And, nobody can understand that.

With Hashi's, we can never predict how our labs are going to be. Do you know much about Hashi's? I'll explain if you like, but I don't want to tell you stuff you already know. :) But, don't be terrified. That will make you feel worse. The most important thing is to try and relax and take things as they come - I know that's not easy! But, there's nothing you can do about it, anyway. Your TSH could come back massively high, or your FT3 under-range. If your FT3 is under-range, then they must treat you. But, let's not cross our bridges before we come to them. One step at a time. OK? :)

1 like
Reply

Thank you. I don’t know enough about Hashimotos, only that it’s autoimmune and so not actually anything wrong with the thyroid, just that my body is attack hay my thyroid and it can fluctuate

Reply

Yes, that's right. From time to time, your immune system launches an attack on the thyroid, mistaking it for the enemy. And, the dying cells deposit all their stock of hormone into the blood, causing the Frees to rise rapidly - something like FT4 30 and FT3 11, something like that - and therefore the TSH drops.

This is just a temporary situation, because the excess hormone is either used or excreted, and the Free levels drop. And, the TSH will rise, but not as quickly as the Frees drop, so we often have a lack of synchronicity, there. Just another reason why the TSH is such a rotten test!

So, after a brief period of 'hyper' - but no-one can predict how long it will last - you become hypo, again. Only a little more hypo than before, because there is not slightly less thyroid to make hormone.

Unfortunately, doctors just have no knowledge of all that - incredible as that might seem - and when your Frees rise, they will accuse your of abusing your thyroid hormone, or say you've 'gone hyper' and 'diagnose' you with Grave's - without the slightest understanding that that is a physical impossibility! But, now, you will know that it's not that at all. It's what we call a 'Hashi's flare' (bad name) or 'Hashi's 'Hyper' Swing'. You probably won't feel any hyper symptoms during this 'hyper' phase, people don't seem to. But, it might depend on how long it lasts.

But, these attacks will get fewer and further between, and your Frees will rise less and less, as there is less and less thyroid to attack. Eventually - and we have no idea when that will be - there will be no thyroid left. So, the antibodies will go away, and you will be left entirely dependant on thyroid hormone replacement of some kind.

In the meantime, the best way to even out these attacks and swings, is to keep your TSH suppressed - the less stimulation to the thyroid gland to make hormone, the less stimulation to the immune system to attack. But, that is fraught with hazard. Because doctors know so little about thyroid, they are terrified of a suppressed TSH. They have heard all these myths about low TSH causing heart attacks and osteoporosis - all rubbish, of course, the TSH has nothing to do with bones and hearts - so they will be continually wanting to reduce your dose to bring the TSH up. But, if you can persuade them to leave it alone, that is possibly the best way to slow down the damage done to your thyroid, and keep it more or less intact - just in case, one day, they find a cure for Hashi's! :D

2 likes
Reply

This is really interesting because it was only the other day that I said to my husband that I feel like my hyper flares are less often and less violent recently. I used to get panic attacks in the middle of the night with them and also really bad anxiety and tremors but now I don’t seem to get much of that. I usually just feel much more energetic and have frequent bowel movements. Then it settles again so maybe it’s slowly giving up! One thing I’d love to know though is how often do these flare ups happen? I seem to change weekly! Plus I’m always worse (I think more hypo) during my period and at ovulation. Is that my imagination??

Reply

You must have had Hashi's for a long time, then.

Impossible to say how often swings will happen (they're not 'flare ups', whish is why I said it was a stupid name :) ), nor how long they will last, nor how long it will take to destroy your thyroid. It's an extremely individual thing. I don't know about periods or ovulation, because I had a hysterectomy long before I was diagnosed (had that gynecologist known anything about thyroid, I wouldn't have had a hysterectomy!). But, a lot of people say they feel worse during that time. I certainly felt worse - hence the hysterectomy - but I've no idea why. I didn't even know what a thyroid was, in those days!

1 like
Reply

Ok that’s good to know. I first had my antibodies detected about 13 years ago but I’m sure I’ve had it longer than that

Reply

More than likely, yes. It takes quite a while for things to get so bad that you go to the doctor with it, because the changes are slow, and the body adapts, the adrenals take up the slack. So, but the time we're finally diagnosed, we've actually been ill for quite some time.

1 like
Reply

My husband would go through what was essentially a 3 week cycle of forever feeling like he was going down with the flu but it never came to anything but women in some ways are worse affected because of the normal monthly cycle on top of Hashimotos ...

Right now in your shoes i would be tempted to try LDN in hopes that levelled out the auto immune flares

You might also look at Magnesium Advocacy Group on facebook theres a mine of info and certainly it has helped other thyroid patients too

Your husband will need to have patience of a saint for now and i hope he will read all the responses to you as i know what it was like as the wife of a Hashimotos patient and with a daughter and grandaughters affected too

You will need to watch your children and they will need to be tested from time to time as they get older

Reply

Hi Paolatello I've barged in from the PAS/B12 deficiency group and know nothing about the thyroid, but low acid can give you gut problems, and can stop you absorbing vitamin B12, an essential vitamin and folate is needed to make B12 work.

B12 deficiency can make one very miserable as well as a a host of other symptoms. As greygoose posted do ask to have your Vitamin B12, folate and ferritin tested.

GPs seem to love suggesting depression (this cynic says money involved?) ignore them. Good luck.

2 likes
Reply

Thank you for your input, I will definitely ask for all the vitamin tests. I am starting to think that doctors diagnose depression when you don’t have it and then down the line you become depressed through misdiagnosis so they end up being correct long term. I’ve been dealing with thyroid symptoms for years now but never been medicated and since the baby I’m so much worse. I’m not depressed but it’s very depressing.

2 likes
Reply

My 'depression' turned out to be severe endometriosis, this was a long time ago. Now my ills are old age, - the idiots.

Do hope you get sorted soon.

3 likes
Reply

Never forget that GP's get an extra fee for "diagnosing" depression.

Its very common for GP's to try to give Hashimoto's patients depression diagnosis

telegraph.co.uk/news/health...

Politely insist on vitamin D, folate, ferritin and B12 testing

Link about Hashimoto's from the home website of Thyroid UK

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

1 like
Reply

The Telegrah article is shocking! It doesn’t surprise me though. I couldn’t believe how many doctors have tried to suggest depression to me when I’m saying “I have days where my knees are so inflamed. I have days where I go for a bowel movement five times and then weeks where I go only twice. I have middle of the night panic attacks that wake me from my sleep but my head is calm just my body is freaking out. I have carpal tunnel syndrome one day and then it doesn’t return for weeks. I have hypoglycaemia for a day and then it disappears, sometimes for months”

How does any of that sound like depression? And yet they blame the baby blues and tell me my thyroid is perfectly fine

2 likes
Reply

Michael Moseley on "Trust Me I am a Doctor" said he gets more letters and emails about thyroid disease that all other topics put together

This forum has only been going 7-8 years and has over 83,000 users, with numbers increasing at around 2000 per month

8-9 out of 10 thyroid patients are female.

Your husband might find this helpful

hypothyroidmom.com/married-...

1 like
Reply

Thank you. He’s very understanding and kind but I can be so irrational at times I’m not surprised he gets confused and frustrated. I feel like I’m two different people

1 like
Reply

Read my previous response ...and get your husband to read the whole string it should help him cope

1 like
Reply

Hello, how are you doing?

Well, I recommend you not listening to the me mediocre medics, I you still bad and they don't doe anything to help you, they're a waste, don't listen to them, they're are selfish and don't care about you.

You could be having T4 -> T3 conversion problems, thyroid health is tricky, starting from ranges, you know what you have, it's body and pay attention to it, please find somebody who is willing to listening and believing you, it's necessary, and no it's not psychiatric, this is one of the biggest misdiagnosis nowadays, you're symptoms are completely physical, and that's what it is PHYSICAL, could you tell me more about your issues, I would be glad to help you.

Best wishes, David.

Reply

No its thyroid ....if your doctors wont treat you ...you will need to self treat with NDT its available without prescription ...i can message you a reliable supplier

Reply

That would be great if you could. I would happily self medicate but I’m scared of the consequences. If I swing from hyper to hypo regularly and I take medication the surely when I’m hyper plus taking medication I’ll be really unwell? I’m scared I’ll end up causing big problems as I already get cardiac symptoms when I’m bad

Reply

Cardiac symptoms could be low Ferritin - Iron - B12 - Folate - VitD 😊

1 like
Reply

So, had my most recent bloods done. I haven’t got my antibody results yet but my thyroid results are:

TSH is 0.7 (0.3-3.0)

Free T4 is 14 (12-22)

Free T3 is 5.8 (3.8-6.4)

How is this possible when I’ve been feeling really bad recently?? Does this mean it’s not my Hashimotos causing my symptoms?

The days around these blood tests I had joint pain, up and down mood, on/off exhaustion, pain in thyroid, stomach issues, on/off poor sleep, nightmares, on/off carpal tunnel etc etc

How can my T4 be low end of normal and T3 be high end of normal?

Reply

You may also like...