A general call to the hive mind of STW. Is there an endocrinologist out there who would be prepared to give me some off-forum advice on hypothyroidism?

My wife has it but her new GP (we’ve moved house) isn’t being very helpful in terms of drugs and explaining things and I’d like to get a better handle on what her blood results actually mean and what she can do about it.

Any help much appreciated. Email is edward [DOT] Rollason [at] hotmail [dot] co [dot] uk.

Thanks

Ed

Ah Bugger, my wife while not an Endocrinologist has suffered with what I feel has been poorly diagnosed Hashimoto’s Hypothyroidism for 5-6 years now. She knows it all backwards but she’s JUST left for work.

Screw the GP, they tend to know nothing about it in my experience and if you see 3 GP’s in 1 surgery then they will all give conflicting info. Get referred to a consultant Endocrinologist and cut out the GP.

YGM 🙂

@thered – it would be really interesting to hear from her if possible. I have suspicions based on reading up on the forums regarding her blood values that she has hashimoto’s – her anti-body values are off the chart (>1000). This hasn’t been mentioned at all.

Her new GP basically told her to shut up and take the drugs – refused to refer to an endocrinologist even though she was seeing one in Manchester before we moved house 🙁

*was expecting a thread about dating trees*

(possibly)

I was diagnosed with Hypothyroidism back in 2007, and when I changed doctors and told him my dosage, he did a double take and said “Sheeeesh that’s high”.

I’d always assumed that the thyroid wasn’t working, and so the medication is directly proportionate to bodyweight to compensate.

Am I missing something key here?

@jarvo – the problem is you seem to get a different answer from every doc you see. When the wife started on thyroxine it didn’t have any impact on her blood values so they upped her dose again and again – she was 24 at the time and she was 3/4s of the way to the max dose. It still didn’t do much to her blood values but her symptoms actually got worse…

It’s clearly complicated and individual specific 🙁

Any endocrinologists in the house?

At least one.

I’d always assumed that the thyroid wasn’t working, and so the medication is directly proportionate to bodyweight to compensate.

I wish it was that simple. Most people with no remaining thyroid function need between 150-250 microg daily of thyroxine but I have seen people with both higher and lower requirements. I am not aware of any study that suggests there is a correlation to body weight and certainly sitting in clinic I can’t detect one.

http://www.btf-thyroid.org is the website of the British Thyroid Foundation and is a source of good advice.

My email in profile but essentially, although Hashimoto’s is characterised by high antibody levels, in practical terms the management is the same, namely steadily increase the dose of replacement with Levothyroxine ( essentially T4 – see below ) until the blood levels are normal. Following is lifted from my contribution to another thread a few years ago:-

If GPs ask for a thyroid function test they tend to get the TSH (Thyroid Stimulating Hormone, produced by the Pituitary, does what it says on the tin) rather than the T3 and T4 levels which are the thyroid enzymes actually produced by the thyroid. The gland produces mostly T4, the work is mostly done by T3 and there is a mechanism in the blood which converts T4 to T3 as needed. That mechanism very occasionally doesn’t work but I can only recall 3 people in 20 odd years where that was so. Therefore T4 or levothyroxine effectively acts as a floating reserve and for the most part that is what is used for replacement letting the body sort out the T3 level for itself.

T4/T3 levels basically control the tick over rate of all the body’s systems so with a low level everything slows up and your body adapts to that level of hormone and activity. You tend to start on a low dose of replacement and work up every few weeks because to do otherwise is the medical equivalent of putting 5000 revs on the clock and dropping the clutch – might work, might be very expensive. By and large, most people get to the correct replacement dose of Thyroxine over 6 months or so and then need another 2-4 months for their bodies to adapt back to the level that the rest of us consider normal.

Body only cares that the level of T4 and T3 is right, doesn’t care if you make it for yourself or get it as a tablet from Boots. Most people do feel better however if they are slightly over replaced ( T4 in the upper half of the normal range and TSH, which goes down as T4 goes up, in the bottom half of the normal range ) and once that is sorted symptoms tend to drift away. Dose needed can change over time as often thyroid is still producing some hormone for itself for quite a while.

My Mrs was diagnosed with underactive thyroid quite a few years ago. The most useful thing we’ve learned over the period since then is to get the doctor to treat the physical symptoms rather than blindly following the readings/dosage.

eg. If she’s begining to feel run down and lacking energy, it’s a good indicator that the Doc needs to reevaluate the dosage even if the test readings suggest it’s not necessary.

@ratadog – thanks I may well drop you a line when I get back from work.

@Handsomedog – Thank you

@ratadog … that’s brilliant, thank you.
I’d been advised by a GP friend, who actually spotted my symptoms and told me to get my a** to the GP’s for a checkup. She advised me that generally for a bigger person the dosage is higher. I was kinda hoping that by losing some timber, I could reduce my dosage. Plus reduce the high blood pressure that came along with it.

I’m currently on 350 microg, which shocked my new GP, as their system didn’t go high enough on dosage, so he had to enter it as two lines on the script.

I find a lot of my symptoms are similar to diabetes. I get tired, “foggy brain” where I can’t think straight, I get very ratty and snappy seemingly when I’m getting hungry.

Everyone is different so not everyone is successfully treated on Thyroxine. But your GP is extremely unlikely to know that.

C_G
(still trying to get her life back)

refused to refer to an endocrinologist even though she was seeing one in Manchester before we moved house

I’d suggest returning to the GP and insisting on a referral. If nothing is forthcoming, change GP. and explain the whole story again.

In the meantime, write to the previous specialist and ask for their opinion. You’ll likely elicit a response of some sort, even if a request for your GP to make a referral….

If either of you have private healthcare through work, cut to the chase and use that.

Hope Cat feels better soon. Hope you’re well too..!

http://www.thyroiduk.org.uk

http://www.tpa-uk.org.uk

So.. anyone (else) know if and why a gp could do a ‘test’ and say thyroid function is fine, when it might not be?

GPs go by a few blood tests alone, they do not take into account any symptoms. They follow guidelines from the Royal College of Physicians that haven’t been updated for 40 years or something. There seems to be a reluctance for referral to an Endocronologist.

Edit: There can also be a problem with the conversion of the active hormone but blood tests will not show this.

Labs decide, not the GPs, whether tests get done as labs have their own budget.

I’ve recently spent hundreds of pounds on private testing – no chance that GPs would sanction them. For example, I’ve had tested vit D, vit B12, iron levels, thyroid antibodies etc etc.

Have had to do my own research (and I’m forever reading) and am now self-medicating. I’ve spent over 3 years in a ‘wilderness’ with rubbish health and absolutely no help from the NHS.

Fortunately I’ve discovered that I’m not alone and thousands of others have been let down.

It really is shocking. 🙁

Having spent my lunch hour reading some of the material on the link C_girl has posted it’s to do with the use of ‘normal’ or reference ranges for comparing your blood values. Not everyone’s blood values fall within these ranges.

Those links are well worth a read.

Yo Ed, the BTF are the people you need to contact: I work with them a bit, they’re a great bunch of people.

http://www.btf-thyroid.org/index.php?option=com_content&view=article&id=255&Itemid=313

http://www.btf-thyroid.org/index.php?option=com_content&view=article&id=55&Itemid=102

Thanks ADH – they’re on my list of links to start reading up on. Nice to know there might be someone to actually talk to other than a GP.