Help: So at the start of the year a private blood... - Thyroid UK

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Linac profile image
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So at the start of the year a private blood test showed I had an underactive thyroid and D3 deficiency.

Doctor disagreed and therefore wouldn't prescribe anything (I've had this fight with him for years over the same symptoms).

So I bought Thiroyd and started on 1 grain, built up to 2 and now on 3. I'm seeing no difference in energy or weight loss. In fact I am now at my wits end with this.

I also had food intolerance tests which meant I cut out wheat, Gluten, Yeast, MSG, Cows milk and a few other things - still no difference in weight.

Depression has creeped in and I'm at the lowest point I've been in a long while.

I need to lose about 4st in weight but over the last few years my weight has literally stayed at the same point no matter what I do. A couple of years ago I was following SW and running and still never lost weight.

I know it's a whole vicious cycle - no energy - no weight loss.

Would there be a reason that Thiroyd is not working for me?

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Linac profile image
Linac
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13 Replies
shaws profile image
shawsAdministrator

Do you take it on an empty stomach and wait one hour before eating?

Linac profile image
Linac in reply to shaws

No. Am I supposed to? Crikey, thank you I will try that. I am also on Modafinil for Narcolepsy so i'm just making sure there's no known interaction between it and anything else.

Honestly I am at rock bottom now. I have low energy because of Narcolepsy and Fibro anyway but this is a whole new level of fatigue. I cannot carry on like this.

shaws profile image
shawsAdministrator in reply to Linac

You follow the routine i.e. you take levothyroxine first thing when you get up with one full glass of water. You wait an hour before you eat.

of

if you prefer bedtime dosing, you have to leave at least 3 hours if you've eaten protein at your last meal before you take levothyroxine. Our stomach has to be empty.

If you are having a blood test next morning you allow a 24 hour gap between last dose and test and take afterwards (if bedtime dosing miss this dose and take text a.m. and night dose as usual).

When were you diagnosed as Fibro? Most likely your thyroid gland was not functioning properly but your TSH didn't rise high enough to be diagnosed as hypothyroid. Fibromyalgia and CFS were only named, I have read, about ten years after the introduction of levothyroxine and the blood tests. Before that we were given a trial of NDT and it was increased till we felt relief of symptoms. Some of our members mention sleeping a lot and find it difficult to wake up.

This is an excerpt:

Hypothyroidism causes various types of problems like changes in the menstrual cycle, constipation, depression, dry hair and hair loss, dry skin, fatigue, greater sensitivity to cold, slow heart rate, swelling of thyroid gland, unexplained weight loss and gain and carpal tunnel syndrome.

The extreme fatigue problem can be demarked as the problem of narcolepsy also. Though there is no direct linkage between the two issues, but as the body is drained off the symptoms seem to be off narcoleptic.

The sleep disorder causes excessive daytime sleepiness in the individual and it makes the person sluggish and drowsy for the whole day. For this reason, the people are not able to keep themselves awake and alert for the rest of the day.

recovery.org/forums/discuss...

Linac profile image
Linac in reply to shaws

That was very interesting to read.

I was diagnosed with Narcolepsy about 15 years ago having assumed I was just a sleepy child my entire life.

I was diagnosed with IBS soon after and Fibro about 13 years ago.

The sleepiness associated with Narcolepsy and the constant dropping off throughout the day, the brain fog, the cataplexy, the hallucinations etc are all bad enough but this damned fatigue is making life hell.

My iron levels and farratin levels were all perfectly fine at last test so at least that's something :)

My doc here is worse than useless and I literally refuse to go to him. I hardly ever go anyway but when I have gone he's always fobbed everything off as "you have Narcolepsy/ Fibro, what do you expect" so I think I need to wrap my head around a course of action.

I need to get the Thiroyd and medication and supplements on point first, making sure I take them at the right times with the right food. Double check what I'm eating and force myself into a little exercise. If I could just lift this depression then maybe I would be able to think more positively :)

shaws profile image
shawsAdministrator in reply to Linac

How long ago were you diagnosed with Fibro?

The reason? I am going to put a link below. We have to read, learn and ask questions in order to recover our health.

Re Narcolepsy - sleep problems are also a symptom of hypothyroidism as well.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

If someone has fibro they usually improve when liothyronine (T3) is prescribed. That has been withdrawn at present due to its exorbitant cost.

Blood tests have to be at the earliest possible and don't take hormones until afterwards.

Blood tests should be at the very earliest, fasting (you can drink water) and allow 24 hour gap between last dose of thyroid hormones and the test and take afterwards.

Usually we take thyroid hormones when we get up with one full glass of water and by time we are washed, dressed and ready an hour has elapsed. Or you can take it at bedtime if you've allowed a gap of about 3 hours if you have had protein in your last meal. If bedtime dosing you miss this before a next a.m. blood test and take afterwards and night dose as usual the same day.

Always get a print-out of your results with the ranges for your own records.

jimh111 profile image
jimh111

What were your blood test results. Three grains of NDT is a large amount, if you notice no difference you are unlikely to have a thyroid problem. Thyroid hormones are not for weight reduction.

Linac profile image
Linac in reply to jimh111

My TSH was 5.7mlU/L and my FT4 was 10.12pmol/L.

The serious fatigue and inability to lose weight was the main reason I did the private test. I understand that NDT is not for weight loss alone but I had expected to see some difference in energy, mood and weight by now.

Nanaedake profile image
Nanaedake in reply to Linac

Is it possible your slightly elevated TSH is due to something other than thyroid disease? Some medications may prevent your own thyroid from working efficiently and so can vitamin deficiencies and being overweight.

The best thing I've found for weight loss is the low carb, high fat diet recommended by the Diabetes website diabetes.co.uk/diet/low-car...

It requires a change of eating and cooking habits but is worth it as it can be sustained long term and helps to prevent diabetes too!

Linac profile image
Linac in reply to Nanaedake

I wondered if it was the contraceptive pill but stopped taking it months ago.

I've had to cut out wheat, gluten, yeast, msg, cows milk and a few other things due to an intolerance test I had.

I always followed the SW plan and years ago never had any problem losing weight on it but now, it just doesn't seem to budge even when I was regularly running 10ks and doing Insanity workouts. It literally will not move no matter what I do/don't eat. I used to eat loads of chips, cakes, sweets etc but I've cut ALL that out and still nothing happens :(

I can't find anything online to figure it out but I'm wondering if my Modafinil medication is having some effect, but I can't stop taking it :(

I am Vit D deficient but am taking a supplement for that.

Nanaedake profile image
Nanaedake in reply to Linac

You must leave 4 hours after taking thyroid meds before you take any supplements or other medication. I don't know anything about Modafinil. Do you think narcolepsy was the right diagnosis? It wasn't thyroid disease that wasn't picked up properly was it? Maybe Modafinil could have side effects such as weight gain as you suggest.

I don't have any answers, just asking the questions. Would it be worth finding a new GP and explaining you want to get to the bottom of your symptoms and get off any medication that's not needed?

I think thyroid patients often get prescribed lots of medicines unnecessarily because doctors don't understand or recognise the symptoms of low thyroid, fluctuating thyroid and accompanying vitamin deficiencies. Instead they diagnose other conditions. Just a thought.

shaws profile image
shawsAdministrator in reply to Linac

Some people take more than 3 or 4 grains and I will give you a link which may be helpful:

web.archive.org/web/2010112...

SlowDragon profile image
SlowDragonAdministrator

Got recent TSH, FT4 and FT3 results?

have you retested vitamin D? How much are you taking? do you also take magnesium

What about testing Vitamin B12, folate and ferritin - all are essential for thyroid hormones to work

see SeasideSusie vitamin advice here

healthunlocked.com/thyroidu...

Have you had thyroid antibodies tested?

Private tests available

thyroiduk.org/tuk/testing/p...

Medichecks or Blue Horizon

Suggest you do the Thyroid plus eleven from Blue Horizon or the Thyroid plus ultra vitamins from Medichecks. Same tests - different companies. £99 - often on offer for £79. option for private blood draw or DIY finger prick

All thyroid tests should be early morning, fasting, no T4 for 24 hours prior, no T3 for 12 hours prior. Delay at take straight after

Linac profile image
Linac in reply to SlowDragon

You wouldn't believe the stuff I take after having the test results.

I take 10000 D3 a day (oil carrier soft gel) along with K2. I also take B12 sublingual daily, Magnesium glycinate and folate.

I stopped taking the contraceptive pill in january.

i know that having Narcolepsy and Fibro and IBS and food intolerances can cause fatigue but this is getting worse no matter what I do.

I cut out all the crap I used to eat due to not being able to eat Wheat, Gluten, Yeast, cows milk, MSG and a few others (I was tested), stopped taking the pill, take a load of supplements in the right order at the right time (except I've been taking Thiroyd wrong) and still nothing budges.

I used to run 10ks - nothing budges. My fatigue has gotten so bad that there is no way I could run 1k never mind 10 and the Insanity workouts I love are a far distant memory and this is just going to get worse.

Looks like I need more private tests because the doc here is rubbish.

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