Thyroid advice needed pls - DM has 3.8 result and many symptoms but within Docs normal range

[ColouringInQueen]

Hi there,
as title suggests I'm wondering if any of you in the UK can advise me on behalf of my mum. She has many symptoms of hypothyroid (always cold, depression, dry skin, constipation, irritability etc) and has just had a test result back of 3.8. Her doc says you're normal if your result is between 0.5 and 4.5 (my docs range is 1-4). She's also coeliac, has struggled with depression for many years and is and a little anaemic (which she's now taking floradix for).

Has anyone managed to get prescribed with "normal" test results? If so, how did you go about it?

Thanks so much. I would really like for her to get treatment as she is really old before her time and I'm sure there is something that can be done to improve things for her - if only a little.

I would say that this result requires further investigation, has she had T4 and anti body tests. Maybe push for a trial of thyroxine to see if her symptoms improve.

Sorry I mean your DM!

Just to also let you know that my levels did rectify themselves so I'm really glad my GP waited - treatment for thyroid is not something to undertake lightheartedly x

Pps if you are really concerned you could ask for a referral to an endocrinologist.

My last TSH was 4.8 last year,with 50 mg of Thyroxine a day, and as I am older, Dr says my symptoms are just ageing .
I have been on this dosage since 1996.

I was referred to an endocrinologist only when I was very ill with an overactive Thyroid gland in 1970. GP didn''t even take a blood test as could see with my symptoms what is was. With underactive it is not so obvious and usually determined by a blood test and GP sorts it out by prescribing Thyroxine if TSH is over the accepted limit.

I had no noticable symptoms of underactivity in 1996, it was discovered during a Thyroid blood test. I had been regularly tested since being cured of the overactivity - eventually after 4 years.

How old is your mum?

Thanks topsi no I dont think she has had those - something to follow up with then.

nanny thanks for your perspective and good for me to be aware that treatment shouldn't be undertaken lightly.

Thanks digerd my mum is 65. I did wonder actually if the cut off point of 4.5 that she'd been given was higher than my gp quoted because shes 23 yrs older...

Anyone know of anything she can do to improve these symptoms if thyroxine is not on the cards?

Thanks v much x

She should ask for a referral to an endocrinologist. She has all the symptoms, maybe the specialist would be able to help better.

How long had she felt like this?

Thanks Coco, shes been like this a long time, but worse the last few years.

Definitely push it. I had a thyroid blood test this morning, I've had them in the past and have been told they are normal but I have a lot of under active symptons so I will persue it if I'm told it's normal again.

Its a new Dr so hopefully I'll get somewheer . My symptoms have got worse since the menopause, maybe your mum is the same?

She shouldn't feel so bad without a reason.

A TSH of 3.8 is too high, but it is also completely meaningless without FT4 and FT3 at least and preferably TPO and TgAb as well. The coeliac, the depression and and anaemia could all be related, so she needs a full thyroid screen and also preferably vitamin B12, folate and vitamin D as well.

digerd I'm wondering what your frees are like. You are not even on a starting dose of thyroxine, your TSH is also too high, and you say you have symptoms?

I cracked it with my GP in the end not on symptoms, which can be notoriously non-specific, but on signs - the things that they can see, or that you cannot fake. My GP eventually accepted that I had signs of hypothyroidism that he could not argue with, even though my TSH was bouncing about between 2.5 and 4.5 and had been for years. Literally as soon as I got on thyroxine those signs started to disappear.

Threesome the tag numbers vary is nothing to do with age but which part of the country you live or which country, the tsh, t4 and t3 vary

Thanks coco I too think its worth pursuing.

rockin thanks for your advice, she has had iron test - OK, but not B12 or vit D so will mention those. Can you suggest anywhere she can read up about the Ft3/4. TPO etc pref plain English? Do you mind explaining what you mean by signs. Glad to hear the thyroxine is helping.

Pfft. Current range for up to date docs is 0.3-3.0. As far as my endo was concerned, better to be under or at least around 2.0.

On top of that, hypothyroidism isn't just about the results - it's also the symptoms and any other deficiencies (eg iron, B12, D, folic acid) that are common alongside.

See a different doc. A good first sign is that they use the correct range and also consider other issues around it (eg other levels, deficiencies, other ways to improve symptoms).

Normal levels often still don't mean normal symptoms. If that is the case then there is quite a lot of info online on different ways to improve absorption of thyroxine (to maximise effect) and to improve the symptoms, eg through diet and supplementation.

This site has some info - admittedly I find some of it goes a bit too far for me (I'm not chucking out my non-stick pans ) but it's still useful.

I also know a number of people who think Mary Shomon is a great resource, although personally I haven't read much of her stuff.

I used info from the BTF when I was first diagnosed.

Rockin My T4 is supposed to be OK, but when I asked about T3, was told they don't do that ]confused]. Some years ago, I decided not to take my 50 mgs before the blood test and my TSH was 5.2, but GP still didn't want to up it .
I have a high pulse rate and a slight heart problem and am in my late 60s and very slim, so think GP would rather me stay on the low dosage.

OP
My sis is 66 and has been underactive since after the birth of her DC2. She was on a much higher dose of Thyroxine when younger, but now has been reduced to 75 mg. She never had any symptoms other than her periods stopped in her early 30s.

A friend of mine was diagnosed at 59, but her whole female family was underactive from a much earlier age. Her symptom was putting on weight, which she had assumed was her age and that she had just given up smoking and eating more.

I became Hypo suddenly at 52 - typical age for the menopause. The DR in Germany said the TSH should be under 4 in 1996. UK DR still saying under 5.

The thyroid UK website has lots of information about this stuff. Try that for starters.

Difference between signs and symptoms. If you say you feel nauseous, that's a symptom. The doctor can't verify that. However, if you then throw up on his shoes... do you see?

Hypo people may have signs like low body temperature (between 35 and 36C), loss of head and body hair, weight gain - there's a list on the Thyroid UK website.

If results come back within normal range, but you have a lot of the signs pointing to under active, does anyone think drs are willing to try you on thyroxine anyway?

Sorry for hijacking your thread!

This will depend on where you are in the so-called normal range.

The normal range get doctor is using is outdated. I've developed thyroid problems at 21, 18 years ago and find most people will feel better when their TSH is below 2. Even done endocrinologists don't use this range though. Your mum needs to take some info with her to the doctor about this. As mentioned above thyroid uk have some useful info on their site and also look at thyroid patient advocate Mary Shomon online or in the Thyroid Diet book. I myself feel terrible when my TSH is over 3.

Thanks so much everyone, this is all really helpful.

no prob coco!

Thanks RockinD for recommendation on Thyroid UK website - will get reading.

Digerd interesting Germany has lower level too...

delasi, freelancegirl are you in the UK? V interested to hear of your lower cut-off levels.

delasi there is another doc she can see so I think that is a good way forward - thanks.

Right off to visit Thyroid UK...

Yep, I'm in the UK Never lived abroad so all my experience of treatment has been here.

My friend has an under active thyroid and her SIL lives in the US, she says the Drs seem to be more pro active and much quicker in prescribing medication. But then again you pay for your health care in the States.

Thanks delasi

See HERE what Mary Shomon has to say about thyoid levels. That is in America but it might be worth taking along some of the studies to your mum's doctor here in the UK. My GP is up for prescribing thyroxine based on these levels so I am sure others are.

Thanks v much "freelancegirl" will def point my mum in that direction.