Thyroid UK
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I have no idea about my condition

So I've had my diagnosis since 2010 but was only actually informed when I had my son in 2012. I began taking levothyroxine I'm currently on 150mcg. I only really know about my condition from what I've read and now I've hit the point where I want to see someone who can actually tell me what is going on.

I'm so tired all the time and I can't lose weight which is now affecting me as I'm borderline diabetic (bloods 7.7mmol). I have online access to my blood work and my last TSH was done in Feb and was 3.45 I was told it was fine and I guess it is but after reading on here I'm not questioning it. so incase it takes me months for a referral to the endocrinologists I was wondering if any of you could dumb it down and give me hints on what works to stop feeling crappy and to help shift the fat.

My weight is 14st 5lbs

18 Replies
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Welcome to our forum and the three words we do NOT like the professional to say when we have blood test results is "fine" "ok" or "normal".

The mistake is (except doctors are unaware) that the aim is a TSH of 1 or lower (most believe a low TSH equals heart problems but we're more likely to get this if not on sufficient hormones).

Can you get a print-out of your recent blood test results with the ranges from the surgery? We recommend this for our own file and we are entitled by law to get copies. Make sure the ranges are also quoted to enable members to comment.

Levothyroxine is taken, usually first thing, (can be taken at bedtime) on an empty stomach and wait an hour before eating.

When having a blood test it has to be at the very earliest, fasting, and allow a 24 hour gap between last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day.

Ask for a Full Thyroid Function Test (probably wont do all but we have two labs that do home pin-prick tests). TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Get a print-out of your results always for your own file and post for comments.

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Hi thank you for the reply. I have a copy of my blood unfortunately they don't print them out as I can view them online. I'm not sure if there is a way to share my results with you on here but my result was TSH 3.45miu/l (0.27-4.2) which I'm guessing is the range as that is always on my results. I don't take meds before a blood test but I only found this out because of google.

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Copy them down from online. Your TSH, for a start, is too high. Many doctors think that anywhere in range is fine - NOT SO. We feel best when TSH is around 1 or lower. Also Free T4 and Free T3 in the upper part of the range. These are rarely tested. You need an increase in dose. Tick off your clinical symptoms and if we are on an optimum dose we should have none at all. That is the purpose of of taking thyroid hormone replacements - to relieve symptoms.

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

Also make sure B12, Vit D, iron, ferritin and folate are optimal as well

We have two private labs that do home pin-prick tests and if yuo decided to do so make sure you are well-hydrated a couple of days before and hands/arms are warm for blood draw.

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

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you can take a photo of your results and post, or a screen shot

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UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

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

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 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 too, especially gluten. So it's very important to test

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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I have online access which is good but I literally have no idea what my results should look like as there is normally several things they take blood for. I'm hoping that I can get a referral to a specialist as I think it is needed. Do you know if excess hair growth is linked to thyroid problems, Another battle I'm having.

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Assuming you are female

Hypothyroid and Poly cystic ovaries syndrome are often linked

More commonly called PCOS

Test results you want results for Thyroid

TSH

FT4

FT3

TPO Thyroid antibodies

TG Thyroid antibodies

Vitamin D

Folate

Ferritin

B12

PCOS - I think they test female hormones

Masses of info on the net

Eg

hashimotoshealing.com/hashi...

Both often respond well to strictly gluten free diet

Essential to test thyroid antibodies to see if high - this is Hashimotos

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I have been tested for pcos and I haven't got it I was told it is hirosutism but they don't seem to care for finding the cause.

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I am not sure how they check for PCOS but I know of a young woman was cured of it by taking thyroid hormones (she didn't have hypo as far as I know but thyroid hormones cured them).

Also PCOS can cause hirsuitism as can a dysfunction of a thyroid gland. I have found that with anything autoimmune few doctors are knowledgeable: This is an excerpt:

The most common cause of hirsutism is polycystic ovary syndrome, accounting for three out of every four cases. Many medications can also cause hirsutism. In patients whose hirsutism is not related to medication use, evaluation is focused on testing for endocrinopathies and neoplasms, such as polycystic ovary syndrome, adrenal hyperplasia, thyroid dysfunction, Cushing syndrome, and androgen-secreting tumors.

mayoclinic.org/diseases-con...

So if your doctor slowly increases levothyroxine, to an optimum, hopefully these distressing symptoms will resolve.

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I had bloods and scans for pcos which all came back clear. I was tested for Cushing's but I don't have that either and I keep pushing but the Dr says it's because I'm overweight to which I said well I've had this since I was a skinny size 6/8 so what caused it then? Maybe I will bag the endocrinologists to look into more if I get my referral.

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weight gain is a common symptom of hypothyroidism and we have to be on an optimum dose of levothyroxine (or other thyroid hormones) to raise metabolism high enough so that weight isn't gained. Too low a dose doesn't raise our metabolism and thus weight is gained.

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TSH is far too high so you need to request 25mcgs dose increase in Levothyroxine

Retesting 6-8 weeks after each dose increase. TSH should be around one or just under, FT4 towards top of range and FT3 at least half way in range

Make sure to get test done as early as possible in morning and fasting and don't take Levo in 24 hours before test, delay and take straight after

Essential to test thyroid antibodies. If antibodies are high then strictly gluten free diet helps majority to improve symptoms

Vitamins are more likely to be deficient too

Hashimoto's affects the gut and very often 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)

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

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

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Thats good to hear about no charges after may18 my daughters surgery were trying to charge her £10 a sheet, mine charge £1 which I am happy to pay but a tenner was extortionate

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Good EU regulations, pushing GP's to modernise and force them to offer results online

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mine charges 30p per sheet.

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thats good! I've just realised mine are online now so no cost, what is annoying is I can only go back two yea s grrr

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Have a read on the Thyroid Uk site. They run this forum and have loads of info which I'm sure you will find helpful but otherwise carry on asking questions and posting results, don't forget the ranges as they differ from lab to lab so are important as we would just be guessing thithout them, but you will get a lot of helpful comments.

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I had my GP appointment yesterday which was interesting she told me I was actually diagnosed in 2008 with hashimoto thyroid, but I was still not informed until 2012. She says a level of TSH 3.45 is fine but she has done me a referral to the endo team as I told her ATM I tierd all the time and I ache all over to point I'm having to take pain killers, which is something I never do as I have a high pain threshold. Now I need to wait until my appointment for more answers.

Thank you to everyone who has commented.

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