Log in
Thyroid UK
100,805 members114,525 posts

Years of M.E but doctor won't prescribe Thyroxin

Hi,

After years of chronic fatigue and blood tests that seem to indicate thyroid as normal, I am at the end of my tether. I've tried all sorts of supplements (Ashwarganda, high iodine such as Kelp) which helped a bit bu the slumps into fatigue, brain fog, muscle pain. legs burning in the morning always return.

I'm now at the point where I've nowhere to turn as my doctors can't do anything. The only thing I haven't tried is thyroxin but as many others on this site have experienced, my doctor won't prescribe it.

Where to turn next? Should I try to obtain Thyroxin privately? Ib that case how do you ascertain the quality? At what level should I take it? 25mg, 50 mg?

At least I would be able to rule out thyroid issues if i too Thyroxin for a month and there was no change. I now there are some small risks doing this (increased heart rate etc) but after 18 years of M.E with limited improvement I need to try.

Any advice gratefully received!

Simon

13 Replies
oldestnewest

Intrigued to hear answers on this as my partner suffers with horrendous CFS/ME. I've advised him to get tested for thyroidism but, like you, he's at the end of his tether and pretty much given up. My daughter is on thyroxine but I'm reluctant to give him any incase his levels are fine and end up causing him more harm!

Reply

You have to get a Full Thyroid Function Test - which GPs wont do but we have private labs which do home pin-prick tests so well worth getting this done. At least it will exclude whether or not he has a problem with the thyroid gland. I have read that ME, CFS and Fibro were unknown and only 'named' about ten years after the introduction of blood tests and levothyroxine. I shall give you information: there are three labs and make sure he is well-hydrated a couple of days before blood draw which should be at the earliest possible (if he was taking thyroid hormones he'd allow a gap of 24 hours between dose and test). GP should test B12, Vit D, iron, ferritin and folate.

Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Labs are Medichecks, Blue Horizon or Thriva

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

Post results on a new post with the ranges for comments.

Reply

Thankyou. I'll look into it xx

1 like
Reply

Have just phoned Medichecks who told me they do two tests:

1. TSH/FT4/FT3/TGAB/TPOAB

2. All of the above but with: ReverseTS/ Vitamins

The first is £59, the second £169. Any advice on which to recommend? How much of the first test is already covered by GP tests?

Thanks a lot for any help here. My financial circumstances are not the best so have to choose carefully.

Reply

if you can manage the second then that would be good. We see daily here on the Forum - members with dire levels of vitamins that can make you feel rotten and prevent your thyroid hormones from working well in the body ...

When you have the results - post them in a new thread so more people see them and can give support.

Reply

Thanks for the advice -I'll probably do that. At least Ill have the whole picture. By the way is it best to avoid certain foods/supplements before sending the sample?

Reply

if you are taking B12 - then your results will be skewed and it can take months for the B12 to return to a base level - so I personally do not think it is worth stopping it. Biotin needs to be stopped for a few days before testing - I have read - as it too can skew results. Stop Iron for a few days before - don't think there are others to be concerned about.

Testing needs to be after fasting and done as early in the morning as possible. Drink lots of water leading up to the test to ensure an easy blood flow !

Reply

I understand but your doctor may only do the TSH and T4 (if you're in the UK) for an initial diagnosis. In other countries we are diagnosed if the TSH goes above 3+ but in the UK they make people wait until the TSH reaches 10 which can take a long time.

I think the first will be fine for an initial diagnosis and remember to draw blood (they are home pin-prick tests) at the very earliest, fasting (you can drink water) and make sure you are well-hydrated a couple of days before). If you were taking thyroid hormones you'd allow a 24 hou4r gap between dose and test.

You can put up a post asking for advice how to draw blood from those who've drawn their blood. Also make sure hands/arms are warm on the moning of the blood draw.

Your GP can test Vits/minerals after your get your above results - I hope.

Put your results on a fresh post for comments. Best wishes.

Reply

Then he needs full testing via Medichecks

2 likes
Reply

I have read that CFS/ME were named about ten years after the introduction of the blood tests to diagnose Hypothyroidism. Before that we were always given NDT (natural dessicated thyroid hormones) on a trial basis. If we improved our health we were hypothyroid.

Reply

I have read that CFS/ME/Fibro were 'named' about ten years after the introduction of levothyoxine and blood tests.

Before that we were diagnosed upon clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones).

Reply

Please post any thyroid test results including antibodies and vitamin levels. Also, if you are taking any medication list that too. We need to view results to give sensible advice.

If you do not have these then ask GP to test, TSH, FT3, FT4, thyroid antibodies TPO and TgAb, vitamin B12, vit D, folate and ferritin. When you have results, post them here along with lab ranges for best advice.

Sorry you are feeling so unwell.

1 like
Reply

The £99 test from Medichecks is the most popular. Often on offer at £79

You don't need Reverse T3 tested

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Reply

You may also like...