Any ideas?: Can anyone advise me on where to go... - Thyroid UK

Thyroid UK
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Any ideas?

Snew
Snew

Can anyone advise me on where to go next with all this as my GP doesn't really seem to know.

I was diagnosed with hypothyroidism around 6 years ago. My blood results always seem to come back in the "normal range" or "slightly out of range" for a number of things. Recently through a lot of pushing I've had some more tests which have revealed a Vitamin D deficiency, slightly high Testosterone level and a kidney cyst.

For the past 5 years since giving birth to my first child I've had mouth ulcers almost constantly, I have a lot of other vague symptoms that can't really be proven like exhaustion, aching, pain, always cold especially hands and feet etc. It only goes away when I'm pregnant.

Since having my second child I had shingles (for the second time - first time was as a teenager), then I lost weight quite suddenly around a year after giving birth. Shortly after my periods returned and my symptoms returned. I eat a LOT. I can't gain the weight back, the weight loss has slowed down but I'm basically on a diet designed to make me gain a kilo a week. My periods are causing me a lot of issues - mainly pain and very heavy. They're also becoming more frequent and a lot of my other symptoms such as the mouth ulcers seem to be linked in with the cycle.

In the past 5 years I've had a lot of blood tests, seen gastroenterology, had an endoscopy and a colonoscopy, seen a dental consultant and had an ultrasound of my kidneys, liver, stomach, and reproductive system. I have a referral to urology to check a cyst and a referral to rheumatology.

Is it all likely to be linked to my thyroid? Are there other conditions that are linked to hypothyroidism or is it something else entirely?

12 Replies
oldestnewest

Can you give us some actual numbers, please? Results and ranges, doses and dates. Otherwise, we'll just be groping in the dark. :)

Snew
Snew
in reply to greygoose

I don't have access to anything recent - the GP just tells me they are all within range for thyroid.

I'm not sure about the vitamin D - just that I was prescribed supplementation in a high dose to take 3 times a week for 3 months.

The only level that I was actually told was Testosterone (I was confused being female) and I was told it was out of range by 0.1

I was started on 25mcg of Levothyroxine 6 years ago. A consultant endocrinologist increased to 50mcg a few months later when I was pregnant with my first child. Towards the end of my second pregnancy I was told that my TSH was just over the range it should be in but that they didn't want to adjust my dose as by the time it took effect I would have given birth and my levels would drop. Again I wasn't given any figures. I've been tested 3 times in the past 18 months and told it was "within range" but again no figures. 😣

greygoose
greygoose
in reply to Snew

Of course you have access. You live in the UK, and the law says you are entitled to a copy of your results. Just ask for them. If they refuse they are breaking the law, and there are measures you can take to force them to hand the copy over. You need to know exactly what was tested, and exactly what the result was, and you need to learn to understand them - we can help, there. You cannot just leave it all to your GP because his understanding of thyroid is very, very limited and he's likely to say things are 'fine' when they really aren't. And, just saying your results are 'in-range' is meaningless. It's where they fall in the range that is important.

So, ring the receptionist and tell her you want a print-out of your your last few sets of results, and that you will be round to collect them at her convenience. Smile as you say it, but don't apologise and don't beg. :)

Snew
Snew
in reply to greygoose

I meant immediate access to respond with results right now. I definately think it's a good idea to go and ask for print outs of all my recent tests. I will go and request them tomorrow :)

greygoose
greygoose
in reply to Snew

Good idea. :)

thyroidorwhat
thyroidorwhat
in reply to Snew

Women have testosterone just like men have estrogen ;p

Snew
Snew
in reply to thyroidorwhat

I know that. I was just surprised that mine was high considering that at the time of the test I was a breastfeeding woman. I assumed my estrogen would be more likely to be high

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies, also 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. when on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 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 .

If you have Hashimoto's, this affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

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 if not had one

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...

Recurring mouth ulcers may be due to low folate or low zinc

Heavy periods are classic sign of still being hypothyroid and can lead to low ferritin and Anaemia.

Ask GP to test vitamin D, folate, B12, ferritin and zinc

Snew
Snew
in reply to SlowDragon

Eek. I struggle to attend even my NHS appointments at the moment - I have a 19 month old with me constantly and a 5 year old who is autistic. Financially we couldn't afford to go private right now and I doubt I would stand a chance of getting any sort of private medical insurance. My GP has assured me that she gave me every blood test possible on the NHS.

I will take a look at the finger prick test to see if I can get some accurate figures. I wouldn't have even known that existed so thank you :)

I'm fairly sure I have an autoimmune issue from what I've read about pregnancy and remission - it's the only thing that really fits.

I'm really sorry if this sounds rude as clearly its helped you - I'm really sceptical about "leaky gut" - the reason being that it was one of the things suggested to me (amongst some dangerous techniques like giving my child a mixture of something that was basically bleach to drink) to "cure" my child's autism (I'm not looking to cure him he has a developmental disorder he's not ill) and when I looked into "leaky gut" everything I found was purely theoretical. I couldn't find anything clinically relevant. Perhaps it was just the context in which I was looking... which is going to make what I'm going to say next sound worse 😣 I don't think it would be wise for me to cut gluten out of my diet - I have a BMI around 17 at the moment, most of me is muscle due to the higher testosterone and carrying children around etc. I know from experience that at around a BMI of 16 I will start to become clinically unstable - my experience being an eating disorder in my late teenage years (which is another reason I can't cut things out of my diet because it wouldn't be healthy for me mentally and because doctors would stop taking me seriously and start pushing eating disorder treatment at me). I could ask for a celiac test - it can't hurt.

I've had all the zinc, folate etc checked the only level that was low was vitamin D and I'm being supplemented for that.

SlowDragon
SlowDragonAdministrator
in reply to Snew

You are legally entitled to printed copies of your blood test results

Suggest you put a new post up with as many of these test results and ranges as you have had done. Members can advise if you might benefit from supplementing

Just being within range, is not always the same as optimal

If not had thyroid antibodies tested ask GP to do so

If you have had anorexia in the past, this can leave lingering symptoms similar to hypothyroidism

academic.oup.com/jcem/artic...

Snew
Snew
in reply to SlowDragon

Thanks for the information. Unfortunately I don't think that my thyroid symptoms were linked to the anorexia as I would assume that the symptoms wouldn't linger beyond a decade?

I'll try and get some actual results!

Mouth ulcers can be caused by low iron.

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