Thyroid UK
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Misdiagnosis?

5 years ago (aged 17) I was dealing with a lot of stress but didn’t do anything about it. I was anxious and continually exhausted and my mood was very low. After seeing my GP and having bloods taken I was diagnsoned with an under active thyroid and started on Levothyroxine. A few months later I was also diagnosed with Depression and Anxiety and started on an antidepressant, Sertraline. I have been having 3-6 monthly blood tests for my TSH level and each time my dose of thyroxine is changed. At one point my TSH level was 22 and at another point it was 0.03 - at this point, 2 years into taking thyroxine my GP said perhaps I hadn’t got an underactive thyroid maybe it was linked to a viral illness at the time. However, 6 months later another test, showing I was underactive again! When the GP says I am not taking enough thyroxine I don’t have any symptoms, when the GP increases my dose I feel dreadful. I have asked for an endocrinologist referral but my GP is reluctant. Anyone been in a similar situation at a similar age?

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Farmgirl22

Can you please post some test results, including your latest. Please include the reference ranges as they vary from lab to lab. It sounds very much like you may have autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid causing fluctuations in results and symptoms. Doctors generally seem to know little or nothing about this.

Have you had thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?

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Normal range for TSH level 0.27 - 4.20May 2014 - 2.74

Oct 2014 - 12.81

Jan 2015 - 4.18

March 2015 - 0.13

Feb 2016 - 0.03

July 2016 - 7.06

Sept 2016 - 5.59

December 2016 - 3.72

March 2017 - 12.6

May 2017 - 7.67

Aug 2017 - 4.80

Feb 2018 - 22.1

May 2018 - 6.66

Never been tested for antibodies.

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I also have my Serum Free T4 levels (normal range 12.6 - 21)

Oct 2014 - 10.9

March 2015 - 20.5

Feb 2016 - 22.5

July 2016 - 10.6

Sept 2016 - 13.9

March 2017 - 11.4

May 2017 - 12.2

Aug 2017 - 15.6

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I had my serum thyroid peroxidase antibody in 2014 when first diagnosed at it was 13 (normal range < 35)

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Farmgirl22

Although one positive confirms Hashi's, one negative doesn't rule it out. Antibodies fluctuate, you could have been tested when they were low, another test could show them to be high. You would need several low results over a period of time to say you do not have Hashi's.

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Farmgirl22

I think there's enough fluctuation there to seriously consider Hashi's. You need antibodies tested.

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For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus you need vitamin D, folate, ferritin and B12 tested

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

Ask GP to test all these, if they are unhelpful then say you believe you have Hashimoto's (also called autoimmune thyroid disease) and need a referral to endocrinologist asap

Also ask for coeliac blood test.

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, 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 get antibodies tested.

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Thank you so much for your advice. It’s so difficult when you think you know somethings not right but the GP just doesn’t seem interested. I’ve tried several GPs in my local practice as well. I have asked for a private referral which she has now agreed to.

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Research your Endo with care - they are mostly diabetes experts ! I would have testing done privately - as so many do on this forum - and re-post with results for advice. The combined brains here will prove far more helpful than most Endos. You have the link in the post from SlowDragon above - did you have a look ?

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I had two different tick fevers at once & it eventually took a toll on my thyroid. Guessing from your user name you spend a lot of time outdoors & around animals as did I. I now take Tirosint and never want on levothyroxine again...there is a huge difference do not let anyone convince you other wise. Find a good endocrinologist it will be worth it because gp only know what they know & when it comes to thyroid you need someone who knows what they are doing.

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If after 4 years of measuring TSH your doc hasn't been able to come up with a diagnosis nor more definitive tests then it's time to get another doctor or endocrinologist AND start educating yourself on this subject. Most of the people on this forum have to take matters into their own hands after believing in their GPs for years. You have made a good start joining this forum, now read all simplistic articles you find on the internet about the thyroid then start reading any medical paper you can manage. The two books to start with are Barbara Lougheed's Tired Thyroid and a book called Stop the Thyroid Madness. It will take some time and dedication but it will keep you out of the painful nonsense you will get from your doc. You will still need your doc for prescriptions however, so be diplomatic with them. If they do not give you what you know you need then get another doc, I'm on about my fifth and have been quite happy for about three years, I pretty much self manage my dose. If you learn about your condition and listen to your body you will be better off.

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Thanks for the book suggestions etc will definitely look into these. There is only one GP practice I can go to, with 8 GPs though and I’ve been to 5 of them. Have got a private endo appt beginning of June.

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Yes, finding a knowledgeable doc/Endo is difficult and takes time. I now travel 200 miles to my good one (and that's one way). But fortunately after you get stabilized you only have to see the doc once in a blue moon, you can get prescriptions renewed via e-mail. It's your Free T3 level to watch, your depression should go away once you have this right (in the upper half of the normal range). Many years ago T3 was the standard treatment for "mental" problems and they had good success with it but they never associated it with thyroid disfunction. Now we can switch that around and say that low thyroid means low Free T3 which causes depression.

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Thanks everyone for your help. I saw an endocrinologist the other day who has said it’s definitely under active thyroid, need to have my TsH level checked every 4 months and he predicts in the next few years my dose will increase to 150mcg and I will start seeing my symptoms levelling off. Feeling slightly disappointed, somewhere in the back of my mind I was hoping I didn’t have anything wrong with my thyroid and we were mis treating it with thyroxine. Also asked about alternatives to levothyroxine but endo said no no no levothyroxine 100%.

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