Any advice would be fantastic. I’ve had underactive thyroid for a long time and it’s been controlled with 50 levothyroxin. I had polymyalgia 10 yrs with bouts of fatigue. But I could always control. The day before lockdown I was discharged from rheumatology and put with endocrinology as I have adrenaline dependency. I am taking five or 6 mg of prednisolone which I have done for 10 years. But the fatigue is absolutely awful. I’ve come to the conclusion I don’t think it’s adrenaline deficiency but something to do with my thyroid. I asked for blood test last week with the GP and they just said all okay. I asked the endocrinologist last May and he said they were okay. But the fatigue is absolutely unbearable and I feel freezing all the time looking back at the last 12 months it seems to last three or four weeks. Of course difficult to speak to anyone at moment I have been resting on the bed generally for the last 14 days. I am a diary keeper and I document all my medications. I just cannot work out what is causing the fatigue but the fact that I’m so cold makes me think it’s my thyroid. Any suggestions or advice would be absolutely fantastic. Good wishes to everybody in this difficult time.
Any Advice. Terrible fatigue and cold. - Thyroid UK
Any Advice. Terrible fatigue and cold.
nonnabrighton
I asked for blood test last week with the GP and they just said all okay.
First place to start is looking at your test results with their reference ranges. If you have these can you please post them. If not then ask the receptionist at your surgery for a printed copy, this should show both the results and the ranges. In the UK we are legally entitled to our results without charge or question.
For a full picture, tests needed are:
TSH
FT4
FT3
Thyroid antibodies
and because we need optimal nutrient levels for thyroid hormone to work properly it's important to test:
Vit D
B12
Folate
Ferritin
If your GP can't or wont do all these tests, we have recommended private labs who do them with a fingerprick test or venous blood draw (blood draw at extra cost).
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
50 mcg is a starter dose - you should have had blood testing every 6 -8 weeks afterwards and 25 mcg increases in dose until TSH was less than 2 (prob less than 1) and free T4 and free T3 were nice and high in range AND you felt properly well ... but you've been left dangling ...
Bear in mind that your GP knows very little about thyroid issues - s/he will have had half an hour on it in their GP training (although levo is the third most prescribed medicine in the UK) - and will be thinking if it's "in range" it's "fine". But it's not ...
For example, if the lab range for free T4 is 12 - 22 (lab ranges vary from lab to lab) and your result is 12.5 you will likely feel awful. If it's 19.5 you will feel much better. But both are "in range" and so "fine" to GP who is half-asleep.
You will also probably only have had TSH and if you're lucky, free T4 tested - and this really isn't enough. You need TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12 testing. And you MUST get your actual blood results (and the lab ranges). You are legally entitled to them - so please ask for them or register for on-line patient access.
Good luck x
Hardly surprising you feel so unwell
50mcg levothyroxine is only a starter dose.
Bloods should be retested 6-8 weeks after EACH DOSE INCREASE
Levothyroxine doesn’t “top up “ failing thyroid. It replaces it. So dose of levothyroxine is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2. Frequently when adequately treated TSH will be well under one.
Most important results are always FT3 followed by Ft4.
Ft3 should be at least 60% through range. Often Ft4 will need to be higher than this and near top of range in order to get high enough Ft3 levels
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12
When under medicated and still hypothyroid low vitamin levels are almost inevitable
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
I would get a blood test. Monitor my Health do a cheap fingerprick one which measures TSH, fT3, fT4 which are the essential ones. Vitamin D deficiency can also cause tiredness but I would simply supplement for now and request a test from your doctor when convenient. I think it's likely you are prescribed too little thyroid hormone.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Far too often only TSH is tested, which is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
On prednisolone your TSH may be affected so it’s ABSOLUTELY ESSENTIAL to test Ft4 and Ft3
With adrenal insufficiency may need to increase levothyroxine in smaller doses....up by 12.5mcg rather than 25mcg
But once you get on adequate dose levothyroxine you might possibly see adrenal insufficiency improve.....it is a symptom of being hypothyroid and under medicated
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