Why is the target range for people on Thyroxine not lower in the UK? Should I increase my dose myself?

[beaudy1983]

I went back to get a test done and my TSH is now 2.8 (it was 2.4 after 2 months on thyroxine but I had another test done this week after 4 months).

I did some research and noticed that the target range in the UK is higher than in other countries. The NHS seems to be happy to get people into a "normal" range but other countries suggest that it should be more like 0.3 - 2.5.

tpauk.com/main/article/why-...

No wonder the doctors in Germany got all panicky about my Thyroid and as soon as I was in the UK they just said everything was fine (I had lots of antibodies which they no longer tested over here)

I am now back over 2.5 and am thinking about increasing my meds by a miniscule amount - maybe 12.5 mg (which is half a 25 mg tablet). Has anyone done that before? I am not particularly feeling better and am still struggling to lose weight.

I am at my wits end because my GP doesnt really show much interest and I feel stupid questioning him because they always come across like know-it-all's and block any line of inquiry off.

I am not even sure if they diagnosed me with anything but hypothyroidism or with Hashimotos (which they did in Germany)... Its just all "yeah take these tablets and let's see what happens ..and even if something happens it's probably just in your mind because the blood tests confirm otherwise"

I don't have really strong symptoms like others (My hair is not falling out and I am not overly cold ) - Everything else: being really tired, having no strength, no weightloss/weight gain etc is all blamed on me, my diet, lack of exercise - I don't even feel energetic enough to walk anymore.

What else can I do?

[shaws]

I am sorry you are not feeling so good. Yes, you are correct our ranges seem to be much higher but the worst point is that the GPs think that once patient's TSH is 'somewhere' in the range, be it at the very top that their job is done.

The majority on this forum seem to be diagnosing themselves and sourcing their own thyroid hormone replacements otherwise they have a very miserable life with insufficient hormones, particularly insufficient to provide the necessary T3 which is needed in all of our receptor cells.

Also, to be diagnosed in the UK, the recommendation is that the patient must wait until the TSH is 10 before diagnosis and in other countries it is 3+ whilst ignoring the patients crippling symptoms. They know none at all.

If you feel symptoms returning, there's nothing wrong with increasing dose slightly. Bearing in mind I'm not medically qualified but even though doctors are supposed to be, none diagnosed me as being hypo: quite a few diagnosed me with 'other than hypo' and had prescriptions for the diagnosis plus an operation to remove a 'web' in my throat which wasn't there at all. (I assumed later on when finally diagnosed that it was an enlarged thyroid gland). It was a first aider who, finally, diagnosed me, by then TSH had reached 100.

I now care for myself and may have a yearly blood test.

[beaudy1983 in reply to shaws]

Wow I am amazed that you can pull that off yourself. May I ask, do you still get thyroxine prescriptions via your GP?

[lorilou107]

Hi Beaudy1983,

I so feel for you. I am having exactly the same problems with trying to get answers regarding my health issues. I have been suffering with symptoms of hypothyroidism going on for 6 months and it was only when a large goitre appeared that they decided to do something. They say I am in normal range but I feel anything but normal. My tsh levels are 4.9 and 3.6 but endocrinologist says I am normal and all the symptoms I have are not related to underactive thyroid. I have just had the right side of my thyroid removed but I'm still not convinced that I will get any treatment for my symptoms when I go back at the end of the month. I have tingling in my fingers and numbness in my hands, constipated, weight gain, brain fog, hair falling out, brittle nails, feeling cold, boiling hot, extremely tired and ridiculously emotional but they say it can't be my thyroid as I am in normal range. Now I'm waiting to get the results from the thyroidectomy to see if it is cancerous or benign and whether my thyroid can cope with only half left. It is so frustrating when even the endo is going totally on tsh levels only and completely ignoring my symptoms. How he can say they are not symptoms of hypothyroidism i do not know, and that is going Private!!!!! Oh, and my dad has Hashis.

I hope you get some help and some answers.

Hugs and best wishes

Lori

Xx

[beaudy1983 in reply to lorilou107]

Oh my, your situation is even worse. I am so sorry about that. I was diagnosed in Germany with Hashis 10 years ago and they overreacted a bit, wanted to take my Thyroid out. Then I had Thyroid tests every few years here in the UK which always came back "normal" (well the NHS definition of it). And finally this spring they found my levels were at 11. Which is far less than other people but it took 10 years to get there. So only now on Thyroid meds am I back to 2.8 give or take a little bit.

There isn't even an attempt to refer me to an endocrinologist. I hate it when they say "it's not your thyroid" but don't do anything else to help you - they totally ignore the elephant in the room. I am tempted to get private testing done for T3 at least so I can rule any issues out in that area. I am shocked you have such negative experiences going private.- May I ask, are you just privately insured and go to an NHS doctor or are you actually going to a private clinic? Some people who have private insurance still end up with an NHS doctor and that's basically pointless.

[Clutter]

Beaudy1983,

You are undermedicated to have TSH 2.8 while taking Levothyroxine. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. 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.

[SlowDragon Ambassador]

When we have Hashimotos it's very common to have low vitamin levels because low stomach acid and leaky gut can cause malabsorption and often gluten intolerance

Get you vitamin D, folate, ferritin and B12 tested

Yes dose needs increase. If you only want to put up by 12.5, just alternate dose e.g. 100/125

You don't say how much you are taking.

Read as much as possible about Hashimoto's

The Thyroid Pharmacist website, the Thyroid Secret video series on YouTube- both Isabella Wentz

Amy Myers, Chris Kresser and many others

[beaudy1983 in reply to SlowDragon]

I am only taking 75 mg - so I guess I could take 75/100? And see how that goes?

[SlowDragon Ambassador in reply to beaudy1983]

You could try taking at bedtime too. It can be more effective. Must be 2-3 hours after eating

But doesn't suit everyone

verywell.com/should-i-take-...

[Rapunzel]

Beware the tyranny of a clueless GP. Mine said I didn't need further medication as I was 'in range' with a TSH of 4.5, after I'd had to beg to be increased from 50 to 75mcg. The goal of medication is to have you at or below a TSH of 1, with some only finding their symptoms alleviated with a suppressed (off the bottom of the scale) TSH.

Good luck