I cannot get a diagnoses and I'm struggling!

[rilec]

Hi everyone, I joined because I'm desperate for opinions. I'm experiencing very strange symptoms that are on the verge of disabling, and I need some input.

First, there is a history of thyroid disorders in my family, which is why I'm posting here and suspect thyroid. (My mom has a small goiter and was diagnosed hyperthyroid, but no real severe symptoms. She took a medicine for a while (forget the name) and apparently has no more minor symptoms since she's been off. Her mother was hypothyroid and on Syntheroid.) For about 5 years now my thyroid has been noticeably enlarged, just like my mother's. On one occasion my thyroid was painful to the touch. Dr. requested a thyroid ultrasound, which to my fault I've been meaning to get done.

About two years ago my legs started to feel cold in bed. And I mean no matter what I do. It ALWAYS feels like there is a draft on my legs, no matter how many blankets I layer or how I tuck blankets in around me. When I touch the skin on the areas that feel cold, the skin itself does feel cold. I've tried a heated blanket, hot water bottles, and if the house is below 81 degrees F at night my legs feel absolutely freezing. (I sometimes still have trouble with this cold feeling even at that temperature!) If I manage to finally fall asleep, I then wake up drenched in sweat from all the blankets I've had to pile on me. That's issue #1.

The second issue is also related to sleep, insomnia. I have always had some sleep onset insomnia since childhood. But recently it's gotten bizarre. My body has fallen into a pattern of sleeping very easily, 8-10 hours blissful sleep for 3-4 days in a row, and then struggling, some nights not sleeping at all, for 5 or so days. Has anyone ever heard of anything like this before? At first I thought it had to do with my hormone cycle, but this sleep cycle has been different from one month to the next so I don't think that's it. On the nights I can't sleep it feels like that normal feeling of tiredness just never kicks in. This is what's making me desperate. I haven't slept in two days.

I had bloodwork done last year, which the endocrinologist said was fine. Here are the results. I also have my CBC and metabolic panel if anyone would like any more numbers. Please let me know.

T-4 Free 0.9 (0.8-1.8)

TSH (REFL) 1.71 (0.40-4.50)

Thyroglobulin Antibodies <1 (< or = 1)

Thyroglobulin 33.0 (2.8-40.9)

Any thoughts?

The only thing that actually "flagged" on my bloodwork was high bilirubin (1.7), but this has shown up before and I was told it's most likely just Gilbert's Syndrome (which I was also told is quite common.)

Holly

[shaws]

Did you have a blood test at the very earliest time and fasting?

Your Free T4 is at the bottom of the range and it would be good if you could have the Free T3 tested. T3 is the only active thyroid hormone and if we have insufficient we can struggle.

If you didn't have the above tests at the very earliest and fasting (you can drink water), I would ask for a repeat including FT3. Vitamin B12, Vit D, iron, ferritin and folate.

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

thyroiduk.org.uk/tuk/testin...

The problem these days is that doctors don't diagnose by clinical symptoms as they used to do before the blood tests were invented.

[Gypsophelia in reply to shaws]

Hi, what is the minimum amount of time to leave the test since eating please. I have my test kit arriving today but I ate early (about 7am) as I was hungry (I wake at 3am). Should I wait till, say 4pm ? Thank you.

[Angel_of_the_North in reply to Gypsophelia]

You shouldn't do the test in the afternoon. Better to do the test at about 4 or 5 am tomorrow and eat afterwards

[Gypsophelia in reply to Angel_of_the_North]

Thank you. I'm going to do what you said, although I'm really keen to get things sorted out. I don't want to waste the whole thing by doing things wrong.

[shaws in reply to Gypsophelia]

Angel_of_the_North has made a good suggestion.

Always have blood tests at the very earliest a.m, fasting (you can drink water). Make sure you've drunk quite a lot a day or two before as it makes it easier to draw blood.

[Gypsophelia in reply to shaws]

I usually bleed like a horror film at the slightest cut but it took me half an hour to fill the two little containers. I will heed your advice in future and drink plenty. Thanks.

[SeasideSusie Remembering in reply to Gypsophelia]

Is this a Blue Horizon or Medichecks fingerprick kit? If so you must send it back tomorrow (Thursday) by Special Delivery, Guaranteed by 1PM Next Day. It has to arrive at the lab on Friday, it can't be sat there over he weekend.

It might be better to do it on Monday. I had one Special Delivery take 48 hours so if that happened to you, again it wouldn't be able to be tested over the weekend.

The results usually come back the same day as the lab receives the sample, if not the next day, so it's very quick.

[Gypsophelia in reply to SeasideSusie]

It's all ready now, and I'm taking it up the post office at 9am for guaranteed next day delivery. I've never had to do this procedure before, had no clue how hard it was to get blood out of a finger! And I've had to inject myself in the stomach with heparin in the past, so I'm fine with doing stuff. If I get it sent first thing it should be fine. Thank you for helping.

[rilec in reply to shaws]

Hi,

The test wasn't done early in the morning or at fasting. (Dr didn't mention either of those requirements).

Until I found this board I wasn't aware I could get these test results through mail order at home. That's something I definitely want to do... T3 for sure if I can

Do you know if the low T4 might mean anything or if it's probably insignificant? Or impossible to tell without the T3?

[eeng]

I know what you mean about the cold feet. Before I was medicated properly my feet felt cold even in a hot bath. That was really strange for me because I have always had hot feet. I sometimes joked that if a satellite was equipped with an infra red camera it could see my feet glowing from space.

Your profile doesn't say where you live. If you are in the UK you won't get a diagnosis of hypothyroid until your TSH is over range for 2 tests 3 months apart. You do have the option of buying a 'thyroid support' product and seeing whether it works for you. By this I don't mean the herbal ones with iodine in (although if you have low iodine levels they might help - you haven't got antibodies so no reason not to). I mean the thyroid support products that actually contain hormones. There is one called Thyro-gold from the USA which contains low levels of thyroid hormone and might be something you could try without being worried it would make you grossly over medicated. Otherwise there are several other forms of Natural Dessicated thyroid (Nature throid, Thiroyd, Thyroid-S) but you would need a small amount, and cutting the pills up is inconvenient.

Your TSH is 1.7, which is well within the 'normal range'. However it is slightly above the 0.5 to 1.5 range where about 90% of healthy people fall. However I can see why your doctor isn't getting excited about it. TSH varies throughout the day, and varies with food, exercise and probably the weather. (that's partly a joke but many people find they need more hormone in the winter). TSH is an awful guide to someone's thyroid health, but doctors are trained to see it as the 'gold standard'.

Good luck.

[HLAB35]

Thyroid issues cannot be neatly compartmentalised as low hormones tend to draw on each other for back up! You've probably got a cortisol issue too and this may / may not be linked to your age and lack of progesterone (pre-menopause?) as well. I too, feel that insomnia's been a stubborn symptom which has been relieved by addressing my adrenals - taking extra B5, p-5-p, Magnesium and having probiotic fibre before bed.

If I'm really finding it hard, then I'll take some niacin too as available tryptophan converts either to melatonin or niacin.. if there's enough niacin in the body then tryptophan will convert to melatonin.. I tried 5-HTP, but that was pretty rubbish - niacin is better (I don't mind the warm flush). Be careful though, because niacin is contraindicated in some conditions.

[rilec in reply to HLAB35]

Thanks for the input. I'm turning 30 this month so I don't think it's pre menopause yet. I've tried 5htp and didn't like it, if I remember correctly it gave me very weird nightmares. I take magnesium every night (Doctor's Best brand chelated magnesium) but haven't tried niacin. I've wondered if I have an adrenal issue too so it might be worth it to try the B5 and p5p. I do worry about taking supplements though when I don't have a diagnosis yet.

[HLAB35 in reply to rilec]

I also recommend Epsom Salts as Magnesium is readily absorbed through the skin.

Your HPAT Axis is clearly malfunctioning - best to read up on it and if your endo is clueless what to investigate next, ask to switch to someone who'll look into your symptoms more thoroughly and to give you some certainty about your liver problem too.

[HLAB35 in reply to rilec]

Also would be worth looking up Wilson's Temperature Syndrome - doubt you'll get that addressed in the UK as it requires T3 therapy...

An acquaintance of mine has Reynaud's as well as having PA...but I think that's usually just the extremities.

I certainly feel colder than many people for about nine months of the year as I'm a bit rubbish at T4-T3 conversion, but not to the point where you're at any longer. It used to be a struggle in the mornings to warm up, but now it's tolerable, so I just layer up a bit and get moving about and I'm fine.