How can i convince my drs to refer me to endocr... - Thyroid UK

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How can i convince my drs to refer me to endocrinologist

greeny1200 profile image
11 Replies

Was originally put on Levothyroxine over 10 years ago due to hashimotos and diagnosed with fibromyalgia. Since then my yearly readings as they say are in the normal range but my tsh has never been less than 4.4 at its worst 6.3 and t4 between 18.7 and 20.0. they fluctuate between these readings all the time despite me saying I still have a lot of symptoms which keep increasing but they fob me off saying I don't need to see an endocrinologist cos it's probably my fibromyalgia. haven't had my antibody reading checked in over 5 yrs they just tell they don't need to. :-(

When I speak to other friends and read posts on here my readings are still high compared to others around 0.1-3 and 15-16 so justifies to me that my dosage is still not right and my symptoms\feeling of unwellness should warrant a second opinion. My doseage has gradually increased and currently alternates from 75micrograms 1 day and 100micrograms the next.

Would really appreciate other readers opinions. Many thanks denise

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greeny1200
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Clutter profile image
Clutter

Greeny1200,

TSH 4.4 means you are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status which for most people will be when TSH is 1.0 or lower with FT4 in the upper range. Read Treatment Options in

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

Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show to your GP.

greeny1200 profile image
greeny1200 in reply to Clutter

Thanks for your reply clutter. That's what I thought but just get fobbed off cos to them it's in normal range. Will get a copy of article and take it to dr

Clutter profile image
Clutter in reply to greeny1200

Greeny1200,

A valid argument is that 0.35 is also within range and the patient is likely to feel better at 0.35 than 4.4.

greeny1200 profile image
greeny1200 in reply to Clutter

Took a copy today to gp who after reading that para agreed to refer me to specialist. :-)

Clutter profile image
Clutter in reply to greeny1200

Greeny1200,

Excellent!

sulamaye profile image
sulamaye

Why do you want to see an endo? What do you think they will do? Most of them know very little you have to be extraordinaryliy lucky to see a good one. The best way to see an endo is to self medicate with t3 tell your GP and then they will refer you to pass the buck. Alternatively you could just do what so many of us do and self medicate because it's better to feel well than make a GP happy.

greeny1200 profile image
greeny1200 in reply to sulamaye

Hi sulamaye, thanks for replying. Because I thought they specialise in thyroid diseases; hormones etc and could give me separate doses of t3 and t4 rather than combined. I wouldn't know where to start self medicating. So any info would be valuable?

sulamaye profile image
sulamaye in reply to greeny1200

Unfortunately very few endos specilaise in thyroid, most of them think of thyroid as quite simple, TSH roughly okay, dosage is right. They are reluctant to prescribe T3 unless you can first prove to them that it makes a difference to you and even then most of them will ignore your experience and tell you that your TSH is supressed so you may get heart and bone problems.

Adding in T3 depends on what dose you are on and why T4 alone isn't helping. It could be that you just need more levo and that you are underdosed. It could be you are converting enough of the T4 to T3, or you are converting too much to Rt3 because of stress related factors, or that you aren't abosrbing the T3 into your cells properly. Half the time here we are hazzarding a guess, trying something to see if we feel better and/or getting more detailed bloods done privately to get a better picture of T4, TSH, T3 and RT3.

Hillwoman profile image
Hillwoman in reply to sulamaye

self medicate because it's better to feel well than make a GP happy.

Great observation. Might use it on my GP. :-)

greeny1200 profile image
greeny1200 in reply to Hillwoman

Wouldn't know where to start with self medicating? It's quite a scary topic for me. Will seehow I get on with endocrinologist and then might be asking you guys your thoughts. Have a good weekend everyone

Hillwoman profile image
Hillwoman in reply to greeny1200

If you're not sure where to start, then it's probably a good idea to find out first where your endo stands. I hope it goes well, but if not, start a new post on the forum.

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