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Thyroid UK
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Angry at doctors

Angry at doctors

Hi everyone,

I've been updating my life insurance and they asked for a medical report from my GP. After reading it I was fuming. Although I've been presenting symptoms for 2 years I never had a blood test, I was just told it was all due to my b12 which I was diagnosed with 9 years ago.

I've been such a mug to just go along with what they were saying. These are the results in October after going in thinking I may have IBS or issues with my ovaries etc. They did a blood test and as you can see my TSH came back at 9. I was then told my TSH was slightly up but nothing to worry about and that they would test me again in December...not knowing anything about Hypothyroidism, I thought nothing more about it. I went back and had scans etc and all was clear.

December came and I was tested and as you can see my TSH went to 25 and T4 dropped again. I can't help thinking if I was treated correctly in the first place I wouldn't be going through everything now.

My last test was TSH 18 so it is dropping but I have a feeling I might be somewhere near if we had started treatment when it was at 9 and I wouldn't have had months of feeling so ill.

I am being tested again on Monday so I'll update again when I get my results through.

7 Replies
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You are clearly hypothyroid with a TSH of 25

Has GP started you on Levothyroxine yet? Or waiting till after next test

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

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 plus vitamins

Private tests are available

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, 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

Do you have Pernicious Anaemia or just low B12?

Pernicious anemia is autoimmune, and having one autoimmune disease makes another more likely,

Hashimoto's is also autoimmune

You say you have IBS symptoms, this can be gluten and/or dairy intolerance, common with Hashimoto's

Your ferritin is low. Eating liver once a week should help improve

Essential to test vitamin D.

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

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...

Reply

Thanks for the information on the tests that good to know. I'm currently on 50mcg of levothyroxine which they gave me in January and thats why my TSH is now 18, I'm hoping it even lower now but I'll get tested on Monday.

I think my B12 has just been low due to being a vegetarian...again this hasn't really been discussed with me. I get the injection from the NHS every 3 months but over the years I've felt so bad I've been self injecting every two weeks, which is why it looks high on my results. But feeling low and tired etc could now have been my thyroid so i may lay off the injections for a while and just have the NHS one.

The IBS issue was very hit and miss there was no pattern as to when it would come about, the doctors now say this could be ovulation pain as I came off my pill about 8 months ago when all of this started. I do balloon up when eating bread etc so there maybe something away there.

I'll have a read of all the link provided. Thansk you so much for your comments.

Reply

You may benefit from daily sublingual B12 lozenges

With B12 injections it's recommended we take good Vitamin B complex daily too

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Reply

I completely understand your anger. Much the same thing happened to me. I just happened to request Vit D and B12 checks in December past because I'm a veggie and was told my TSH was 26. I only found out then that it had been 11.75 at the last tests, 19 months previously, but they considered that 'borderline'. I wasn't followed up. When I expressed concern that I'd somehow fallen through the net, I was told 26 was nothing, they see levels of 100 "all the time". It's staggering that there is a range that is completely ignored by GPs in the UK and that double or even almost triple the upper limit is considered 'borderline'. Then again, I requested a thyroid check because of the length of time that had passed since the first bloods and the doctor has referred me ENT - I'm pretty sure that's not the right department. They've no clue and no accountability.

3 likes
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Yup, you're tight.

They have no clue and little accountability.

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I think many of us went through something similar, which is appalling. I was diagnosed with PTSD following a medical accident, when in fact they had destroyed my thyroid with an overdose of iodine. Although my blood tests showed my thyroid was more than sick, they ignored this and tried to put me on anti depressants. I refused. I have been left with peripheral neuropathy and heart damage (I had a heart attack after the op due to bleeding out - no blood, nothing for the heart to pump, heart stops). I was told it was my fault. Bitter? You bet!

We have to take responsibility for our own health, not trust in the GP. I urge anyone going though the hypo/hyper journey to get their blood results and read as much as you can, and then tackle the GP.

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OK so I've just got half of my results back and I've gone from TSH level of 18 to 3.83 so I guess I'm in the normal range now. My FT4 hasn't come through yet, but somehow I thought if I was normal I would feel better and I feel no different from when I was first diagnosed...don't get me wrong I don't feel ill, but I'm still tired, can't sleep properly, get chest pain although not as much, hair still falling out, pelvis aching.

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