Underactive thyroid for 20 years and still feel really ill - help!

A good starting point is to find out what 'normal' actually means for your boyfriend. When did he last have his thyroid level checked? Get in touch with the surgery and ask for the actual TSH number with accompanying reference range. Don't be fobbed off, this is information you are entitled to and it should not be withheld.

If you can come back with that info, together with the dose of thyroxine, and any other medications being taken, it might shed some light.

My boyfriend has finally managed to get his TSH numbers off his doctors (crikey they don't like you to have that information do they?!)

His TSH is 4.4 (with a range of 0.3 - 5.3).

He is taking 50mg of thyroxin per day. (as well as 4 microgram of Cardestan which has now been increased to 8mg) for his blod pressure.

Andy's TSH was last checked in October 2009 when his TSH was 5.2 (same range).

His free T4 was then 12.4 (range of 11.5 - 22.7)

His doctor says his T3 hasn't been checked in a few years, in fact he can't find any record of it ever being checked.

The GP were really NOT happy about him speaking to websites about his underactive thyroid, and maintain many of his symptoms could be caused by other things. The GP did soften a little when he pointed out there are also doctors registered with this site, but this is the first time Andy has EVER been given these TSH numbers so that's encouraging, even if we have no idea what they mean?!

Thanks for all your help!

Well done for persevering! As I said, the patient is entitled to this information, so they have no right to withhold it. But yes, it can be a real battle.

No wonder Andy is not well. He is not being properly treated for his thyroid condition. A TSH of 5.2, and an FT4 of 12.4 is absolutely NOT acceptable for someone on replacement thyroid medication. Neither is a TSH of 4.4

The goal of treatment for this condition is not just to get the TSH within range, but to also get the patient back to optimum health. The dose required to do this does vary from person to person.

50mcg is a very low dose. A typical replacement dose is 100 mcg or higher for many people. And the vast majority of thyroid patients need their TSH to be near the bottom of the range. Somewhere between 1 and 2 is a good place to aim for, although some need to be below 1.

My suggestion would be to go back asap to discuss with the GP an increase to 75 mcg with another blood test to be done 6 weeks later to check that TSH is still within range. Assuming no problems, then increase to 100 mcg with blood test after 6 weeks. Hopefully by this point, some improvement in overall wellbeing will be evident.

If the current GP won't co-operate, then you need to change to a different GP, even if that means going to another surgery.

Good luck!

<b>Updated on Jul 20 2010 4:53PM:</b> By the way, I'm not a doctor

Thank you so much for all your advice so far! It was wonderful just to see hope returning to Andy when he read your words that at last somebody was listening to him!

Sadly, it didn't last long. He returned to his GP who has not increased his Thyroxin at all; he keeps saying Andy's symptoms could be due to other things, not just his thyroid.

Andy says he keeps redoing tests instead: kidneys had a blood test last week (they were fine); heart rhythm, liver, heart ECG (basic test at surgery and now going for a full ECG at hospital). He's going to do a full test next to see if Andy's depressed (heck, I'M getting depressed, I don't know about Andy!) and then, finally, he's sending him to a Consultant Physician.

Andy said he'd change his GP but wonders how on earth you find a GP that will actually listen to you and treat his thyroid properly? How do you know you're not just gonna get another GP that doesn't treat him properly? He just feels he's trapped in this cycle of getting nowhere and he's losing hope and energy to keep fighting, aarghh!

Thank you for listening anyway!

Oh I'm so sorry to hear all this. This doctor is wasting so much NHS money doing all these tests. Why on earth he won't at least try increasing the thyroxine dose is completely beyond my comprehension.

Andy, if you're reading this, please do not give up. This is a battle you absolutely have to keep fighting! I totally understand from my own experience how difficult that is.

An increase in thyroxine may not solve all your problems, but I'm convinced from your thyroid test results that you would feel a significant improvement. I suffered from severe mental illness which the medics were adamant was nothing to do with thyroid. They were wrong, wrong, wrong. I listened to my own instincts and fought hard against taking anti-depressants. These days, the only time my mood becomes depressive is when my thyroid levels are out of balance. And my GP finally admitted that I was right

Unfortunately, it is all too frequently the case that thyroid patients have to be their own advocates. Your GP needs to be educated about how to properly treat thyroid patients.

Here's a snippet from Pulse Magazine 26/5/2010. This is a weekly UK medical publication specifically aimed at GPs. In this particular article, NHS Endocrinologist Dr Anthony Toft states:

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"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance."

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You need to take this article to the GP. I have a digital copy of the full article which I will be happy to email to you, if you send me a private message with an email address.

If the GP still won't co-operate, then ask for a referral to an endocrinologist. You are entitled to a second opinion and there's a good chance that an endocrinologist might recommend a dose increase.

Incidentally, I found it was very helpful to have my partner come to the appointment with me and participate in the discussion.

<b>Updated on Jul 31 2010 11:34PM:</b> I forgot to mention that this same endocrinologist Dr Toft, is the author of the book Understanding Thyroid Disorders, published by the British Medical Association. It may also be worth getting a copy of this book to take to the GP.

The book is available in many pharmacies, or online through Amazon and familydoctor.co.uk/thyr01

I have sent the article to the email address you provided.

When I take information such as this to my GP, I usually print out the article and highlight appropriate paragraphs with a highlight pen. That way, the GP can't miss the relevant info!

In this case, the most appropriate paragraphs to bring to his attention would probably be this one in section 2:

''Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.''

And the one I quoted previously, which is in section 6:

''The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.''

Wishing you all the best, and hoping to hear from you again soon with a more positive outcome!

Thank you so much for all your help over the past few months, and the article you sent to Andy too. It was lovely to see the relief and smile on his face again that actually somebody had listened to him for a change!

Well his GP initially refused to send him to an endocrinologist saying he could do all the tests needed. And he refused to increase Andy's thyroxin too. Eventually he agreed to send Andy to an Endocrinologist, but not before doing blood tests on his liver and kidneys, 2 ECGs (including a 24hr test!) , an ultrasound on his liver, sending him to the sleep disorder clinic, and testing him for depression (you're surprised he's depressed?!)

So today he finally made it to see the endocrinologist who said his TSH results may not necessarily mean his thyroid dose isn't correct and he'd like to send him on some other tests first (aarghh!) So he's testing Andy's cholesterol, testosterone, more blood tests, thyroxin and diabetes test. He said he may do a T3 and T4 in the future but not now, and he'll do a full range of tests before he next sees him...in 3 MONTHS!

And the endocrinologist's not happy about us looking at these websites either and was NOT happy we'd been reading the Dr Durrant-Peatfield book ("Your Thyroid and how to keep it healthy") which he was familiar with and dismissed.

So Andy feels like he's wasted his summer holidays getting nowhere and starts back at University next month feeling as ill as he did at the start of the holidays! Why is this so unstraightforward? I have Multiple Sclerosis and there is no cure - I get it; but there is a cure for you guys, why on earth are the doctors making this so difficult for you?

I've got that off my chest now, sorry! - If somebody can just help me down off this soapbox...?!

I apologise for not having responded sooner to your update. I think the email alert system must have failed the day you posted this, as I didn't receive anything in my inbox.

I'm really sorry to read of the struggles your boyfriend is still having. As you will know by now, he's by no means the only one having to fight his corner with the medics. It's truly an appalling situation that so many people's quality of life can be needlessly ruined in this way. Not to mention the amount of NHS money that's being poured down the drain... quite ridiculous. As you say, when you have a health condition for which no cure has been found yet, you have no choice but to accept and do the best you can (I'm in a similar situation but not MS).

Still keeping fingers crossed of course that you'll very soon no longer need to rant about Andy's under-medicated thyroid condition. But until then... don't waste your energy on getting down off that soapbox... by the sound of things, you're sure to need to climb back on soon enough!

I completely agree with everything that RedApple has said, your boyfriend's test results definitely show that he needs his thyroxine increasing!!!!

Have a look at this article on normal TSH, based on a study of 65,000 people with normal thyroid function: tinyurl.com/yyodja

Pins and needles in his hands could be caused by carpal tunnel syndrome - very common when hypo as the body retains fluid. Another thing to check is his vitamin b12 levels as low levels of this can cause tingling too.

Re the depression test - your boyfriend should inform his GP that depression is a symptom of an underactive thyroid!

Make sure that your boyfriend had any future thyroid tests done as early as possible in the morning as TSH is highest then and he's more likely to get treated optimally. Also it's best to take thyroxine after the test that day instead of before as it peaks in the blood for a while after taking it.

Good luck and looking forward to hear how he gets on.

I'm sorry to hear your boyfriend has had so many problems with his health, I do understand how he feels. I've had hypothyroidism for 14 years with a multinodular goitre, and to be honest my GP is useless. I've been on 100mcg of Thyroxine and 20mcg of Liothyronine the whole time since my diagnosis, and never once had it reviewed. The subject of surgery did arise last year but nothing had been done since, and it's very frustrating. I feel ill all the time and honestly don't know what to do now. So I truly hope your boyfriend gets the help he needs and deserves.