Help Please - Hypothyroidism diagnosis...

Good evening all,

Please can someone help?

I always have regular yearly blood tests as there is a history of diabetes in my family. In September 2018, I was advised by the GP to return after a 3 month period as my thyroid was borderline.

Last week, I went for the repeat test and had a call from my GP a few days later to advise that I had Hypothyroidism and was told I need Levothyroxine. I was put on the 50MCG dosage and I’ve had terrible side effects. My chest feels heavy, my body feels cold and numb. I went back to the GP today - this time, it was a different GP who advised me that I don’t actually have Hypothyroidism- I have it sub clinical instead. This contradicted was I was originally told. She also said that the side effects I’m experiencing are not common.

My GP is going to speak to an endrodoctioligst tomorrow but I’m very confused. I was given the diagnosis and now I’m not?

If I was to post my blood test figures on here, can someone interpret them please?

Any help/guidance is appreciated. Many thanks.

[SeasideSusie Remembering]

What brand of Levothyroxine were you given? If it was Teva then many, many members have had serious side effects from that brand and when changed to another brand they are fine. Of course, side effects can come from any brand, so it's always worth changing the brand to see if the next brand suits.

Please post your results, we can help with them, but include the reference ranges as they vary from lab to lab.

[Hidden in reply to SeasideSusie]

Hi SeasideSusie,

I’ve just checked and the brand is Teva. I might have to speak to the GP to get the brand changed. I’m trying to figure out how to post pictures on here and I’ll upload as soon as I know.

Thank you.

[SlowDragon Administrator]

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

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

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. (when on Levothyroxine Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. ) This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

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.

Do you have any gut symptoms?

Are you lactose intolerant?

Or gluten intolerant?

[Hidden]

Thanks for all your replies. Silly question - but - how do I upload pictures on here?

[Hidden]

I’ll post instead:

Serum TSH Level

September 2016 = 6.13mu/L (normal range 0.35 - 5.00)

January 2019 = 4.54mu/L (normal range 0.27 - 4.20)

Serum Free T4 Level

September 2016 = 10 pmol/L (normal range 9-19)

January 2019 = 14 pmol/L (normal range 10-25)

Based on the above, my re test shows that my serum TSH reduced and moved towards the normal level? The GP then said that they did another test... results below:

Se thyroid peroxidase Ab conc:

January 2019 = 193iu/ml (normal range <33)

This is the antibody test which is extremely high which may explain why they’ve recommended Levothyroxine?

Thank you.

[SeasideSusie Remembering in reply to Hidden]

TSH over range but under 10 is classed as subclinical hypothyroidism. When this is present and there are raised antibodies then levothyroxine can be started to "nip things in the bud".

Email Dionne at ThyroidUK for the article by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, that was published in Pulse magazine, the magazine for doctors. Print it and this information is in answer to question 2, you can show this to your doctor. You should stay on Levo.

[greygoose in reply to Hidden]

Yes, it does explain it. It also explains the difference in your TSH levels. The high antibodies mean you have Hashimoto's Thyroiditis - what the NHS calls Autoimmune Thyroiditis. Do you know anything about this? It's a disease where the immune system attacks and slowly destroys the thyroid. It's the most common cause of hypothyroidism.

(By the way, I think you mean 2018, not 2016, in the dates you've listed. )

But, you are hypo. You're hypo as soon as your TSH gets to 3. Don't worry about this silly 'sub-clinical' business! It really makes me cross. It's like diagnosing a woman with sub-clinical pregnancy because she's only at three months. Either you are or you aren't. But, the NHS really hates diagnosing people with hypo, because it costs them money, what with the free prescriptions, etc. So, they've decided that you're only hypo if your TSH is 10 - the only country in the world that says that! Between the top of the range and 10 they say you're 'sub-clinical'. So, you see what a nonsense that is? It really doesn't make any difference to anything. You're still hypo, and still likely to suffer the symptoms of hypothyroidism. But, they like to tell you you're 'sub-clinical' so that if they treat you, you think they're doing you a favour. lol But, it's possible that they did take the antibodies into consideration and decide to treat even though your TSH isn't yet 10.

[Hidden]

Thank you for all your help guys!

Moving forward, it is clear that this brand of Levo isn’t agreeing with me. I’ve woken up this morning feeling okay, still not great. The GP is calling me later today - do I request a different brand?

[SeasideSusie Remembering in reply to Hidden]

Hidden

It would have helped if I'd put Dionne's email address in my other reply

[e-mail]

Sorry about that. Ask her to send you Dr Toft's article that was published in Pulse magazine.

[SlowDragon Administrator in reply to Hidden]

Yes, you can say you have been in contact with Thyroid UK support group and many people find they react badly to Teva brand of Levothyroxine

More about this on this link

thyroiduk.org.uk/tuk/treatm...

Activis, Wockhart or Mercury Pharma are all other options

Your 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

Essential to test vitamin D, folate, ferritin and B12.

Ask GP to test

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's 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. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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

or buy online for under £20

chriskresser.com/the-gluten...

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

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

[Hafenfeld]

Sometimes there is a misdiagnosis. Sometimes the medication is prescribed at too high of a dose. Zero in on if you are truly Hypothyroid by doing your own research. The internet is a wonderful tool to help us make our determinations. Having your doctor be a partner in your health is a wonderful thing. When you are educated and can ask the right questions of your doctor I believe most of them respect that.