Hypothyroidism - how to go about endocrinologist referral?

[GoneGirl99]

Hi Everyone,

I was diagnosed with hypothyroidism 18 months ago, and have been taking Levothyroxine since then. My diagnosis was following around 18 months of "borderline" thyroid blood tests with my old GP (who was completely useless!)

I'm working with my current GP to find the correct dose as I'm still experiencing extreme fatigue, depression and weight gain.

I'm concerned that my GP is treating my thyroid condition so slowly and that they do not seem to take the impact it has on the rest of my life seriously. I would really like to see an endocrinologist to receive optimal treatment as I feel that my GP is very much treating it "by the range". I have BUPA medical insurance through work which would cover the referral (I'm not sure if that makes a difference or not?) .

My last blood test (2 weeks ago) results were : TSH = 4.8 and T4 = 12

The test before that was in March and my TSH = 4.2 and T4 = 16. My dose was increased from 50mcg to 75mcg.

Test before that was in November, my TSH = 8.6, I can't remember T4. I was increased from 25mcg to 50mcg.

My GP doesn't seem to appreciate how much this condition is affecting my life. I used to be very active and healthy. Over the past 3 years I've gained A LOT of weight (I've gone from 78kg to 107kg in that time) but never ever had problems with my weight until this time. I've had to arrange to work one day from home every week because otherwise I am just too exhausted to finish a full week at work. And I'm not able to take part in my hobbies or socialize as I used to because I'm so tired all the time.

I've seen a few different GPs at my current surgery and they all say that I need blood tests every 3 months and they'll tweak the levothyroxine dose accordingly, however, this is far too slow for me - it has been 18 months since I was diagnosed and I actually feel worse off now than I did then. I was hoping that an endocrinologist would be able to help but I'm not sure how to ask for referral (just tell GP everything I've said here?) or if my blood test results are "serious enough" for an endocrinologist to accept a referral from me.

Has anyone else had experience with being referred to an endocrinologist and could you advise me?

[GoneGirl99]

Forgot to say, GP called me on Monday and told me to increase levothyroxine to 100mcg.

[Clutter]

Welcome to the forum, GoneGirl99.

You were undermedicated to have TSH 4.8 on 75mcg so it is good that your GP has increased dose to 100mcg. This is likely to optimise your thyroid levels which for most people is when TSH is 1.0 or lower with FT4 in the upper range. It is a slow business optimising dose as adjustments are usually in 25mcg increments to avoid causing an adrenal crisis but adjustments can be done at 6-8 week intervals, 3 months is too long. Ask your GP to check levels 6-8 weeks after you increased to 100mcg in case further adjustment is required.

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

Many hypothyroid patients are low or deficient in ferritin, vitamin D, B12 and folate. Symptoms can be similar to hypothyroid symptoms so ask your GP to do blood tests.

[GoneGirl99 in reply to Clutter]

Thanks Clutter! I had ferritin, vit D, B12 and folate blood tests in December, all results were in the normal range with the exception of vit D (I've got print outs at home but can't remember the exact results off the top of my head). I've been taking daily supplements for Vit D, B12 and iron since then and do feel marginally better than I did before Christmas.

I will book my blood test for 8 weeks time though, it is good news that I don't have to wait 12 weeks

I guess I am feeling frustrated. This time last year I was starting to feel much better, then over the summer I had a blood test with TSH result of 0.3 and my GP cut my dose from 50mcg to 25mcg with effect from beginning of Sept. I felt increasingly terrible until the test in November which showed TSH had gone way up (to 8.6) ... when I was first diagnosed my TSH was 6.4 so I feel like I've got worse since the original diagnosis!

I get so sick of feeling like I'm being brushed off by my GP. Even though I'm very overweight, too exhausted to work a full week and depressed and I just get a blasé "it's all down to your thyroid! come back in 3 months time!" from them.

[Clutter in reply to GoneGirl99]

GoneGirl99,

Dosing according to TSH should be made a capital crime! Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

If you post your ferritin, vitamin D, B12 and folate results and ranges in a new post later and say how much you are supplementing we'll advise.

[GoneGirl99 in reply to Clutter]

Thanks again Clutter, I've got all the results printed out at home so I will dig them out tonight!

I will read up on the Treatment Options link, thank you for that

[Rapunzel]

Some wise heads will be along to help soon, I'm sure. In the meanwhile, a few things

Firstly the aim of thyroid medication should be to have the TSH at around 1. Some of us need a suppressed TSH to feel well. Without the ranges (the numbers in brackets) it's difficult to help further. Has your T3 and vital vits and minerals ever been tested ?B12 D Ferritin and folate need to be at optimal levels for your body to use thyroxine efficiently.

I'm afraid that treating thyroid disease is a slow process, but your GP practice does seem to be tardy. Changes to dose, until you are symptom-free, should take place every 6-8 weeks and then be subject to a blood test to see how things are going.

BUPA cover is for acute issues and you may find that as you have already been diagnosed, there may not be anything BUPA are prepared to do to help matters. Ask LouiseRoberts for the list of thyroid friendly endos, many of them are experts in diabetes and that's no good for us. Perhaps you may be able to get a referral but in your mocassins, I'd be wanting to know why your practice left you on a starter dose for the elderly or those with heart conditions (25mcg) for little short of a year if I've read your post correctly.

[GoneGirl99 in reply to Rapunzel]

Hi Rapunzel, thanks so much for your reply!

I didn't explain properly in my original post, but I was initially on 50mcg for 6 months then had a blood test which showed TSH result of 0.3 (although I was still experiencing some hypo symptoms, not as severe as now) and my GP said this could be because I was taking too much thyroxine so cut my dose down to 25mcg. I was on that for 3 months and then my TSH results went bezerk!

I will book my next blood test in the 6-8 week window rather than waiting 12 weeks as the practice suggested, that's a good positive step

[SlowDragon Administrator]

Also find out if you have been tested for high Thyroid antibodies. If they are high this means the cause is autoimmune thyroid, called Hashimoto's.

Important to know, as if it is due to Hashimoto's then, like many you may find gluten free diet significantly reduces symptoms & may lower antibodies too

Medics currently think antibodies are irrelevant and that only treatment needed is to replace missing hormones with Levo. Most patients with Hashimotos find they don't feel well until they address the cause of the high antibodies, which is usually leaky gut and/or gluten