Severe fatigue & weakness but normal test results

Hi there, I'm new here but have learnt a lot from reading others' posts. I'd love some advice on my situation if anyone can help?

Here's my story: in 2007 I became very unwell with severe fatigue, muscle weakness, and lots of other symptoms ... I had to drop out of university, was diagnosed with M.E. and became housebound, sometimes bed bound. It took six years before I was able to start working again. During this time I was found to have a vitamin D level of 16 and my GP kept saying my thyroid was borderline low but he wouldn't treat it unless it dropped below the line. After switching GPs, I was put on 25mcgs of levothyroxine and also treated with vitamin D. I think these contributed to me getting better over a couple of years.

I have now been able to function to a high level for 3 years but recently my energy started dropping again and I've been told to take time off as I'm unable to keep up. The symptoms most affecting me are severe fatigue, muscle weakness & lack of stamina, dizziness & vertigo and brain fog.

I had blood tests recently and my vitamin D level was 35 nmol/L so I've started supplements again. My thyroid results were:

Serum free T4 level 18.6 pmol/L (12.0 - 22.0)

Serum TSH 1.95 mU/L (0.3 - 4.5)

Before I got these results I upped my dose to 50mcgs on advice of a relation who has hypothyroidism. I probably shouldn't have done this but to be honest I'm so desperate to get back to finish my college course. I have an appointment with Dr Magovern in Dublin next week whose name I found on here - hoping he can shed some light on my symptoms.

With my blood test results being normal, is there a chance my symptoms aren't caused by my thyroid? Should I drop my dose back to 25mcgs?

Apologies for the long post but I'm really desperate to not lose another six years - I'm 28 - and another college course (which I absolutely love). 

Thanks for any advice!

[Marz]

You are still on a VERY low dose.  You should have been tested around 6 weeks after starting on the 25mcg of T4 and had the appropriate increase.  Did you have your anti-bodies tested - Anti-TPO and Anti-Tg ?    You also need to know the FT3 result to see if the T4/Levo you are taking is converting into the ACTIVE thyroid hormone - the one needed in every cell of your body.

Also you will need your B12 - Ferritin - Folate tested - and the results need to be optimal and not bumping along the bottom of the range.  If they are low in range - then you can experience the symptoms you mention.

If your GP does not agree to these tests - then you can have them done privately through Thyroid UK.

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

So how long have you been taking 50mcg ?  Your VitD is still very low and you will need to take around 4000 IU's daily to bring the levels up.

Many of you symptoms can be attributed to low B12 so take a good look at the website below and scroll down for signs and symtpoms.

b12deficiency.info/signs-an...

[Hidden in reply to Marz]

Thanks so much for the informative reply! I've never been tested for T3 or antibodies and my GP said he won't do further tests as my TSH is normal.  He's actually the most open-minded and forward thinking one in the practice so I won't get further with anyone else there. I'm going private next week though so will request these tests.

Would a full blood count show up B12/Ferritin/Folate or is this a seperate test?  I know I've been low in folate in the past ... the website is very useful, particularly the mention of cracked corners of the mouth - I get this quite badly when my symptoms are flaring up so I'll definitely mention it to my doctor.

I've been on 25mcgs for about 4 years and I've been taking 50mcgs for about 12 days now so I know it's early yet.

Also for Vit D I'm on 1000 iu daily and have recently been given 20,000 iu tablets to take weekly for four weeks so hopefully this will get my levels back up - I'm not sure how much Vit D can contribute to the symptoms though..?

[Marz in reply to Hidden]

No the FBC will not reveal the B12/Ferritin/folate - they are individual tests.  The FBC just measures the size of your red and white cells and related things.

Check out   labtestsonline.com  which will explain the test and others - a useful resource.

VitD is important for many conditions so the loading doses should help.

grassrootshealth.net

vitamindcouncil.org

Don't expect your Doctor to know much about B12 - sorry - but reading on this forum and the PAS forum I can see it is an uphill struggle as Docs are not trained in vitamins and minerals.  If you are just in range they seem happy - when with B12 you need to be around 1000 or at the very least over 500 to prevent neurological damage.

Hope all goes well with the private appointment.

[shaws]

I'm sorry you've had a long term being unwell and undiagnosed and unmedicated.

That's due to the modern method of diagnosing by the TSH only when the doctors fail to test the Free T3 and Free T3 initially. So, like you, many remain unwell and are unaware of the reason.

If you are only taking 50mcg of T4 (levothyroxine) it is an extremely low dose and usually a starting one.

Marz has made good comments.

You will learn that doctors seem to be very poorly trained in detecting patients hypothyroidism because the reliance is on the T4 alone and not the clinical symptoms.

We have to read and learn in order to recover.

Levothyroxine is synthetic T4 (levothyroxinewhich should convert to sufficient T3 (liothyronine) which is required in all of our receptor cells to drive our metabolism and make us feel well. Sometimes we don't convert levo sufficiently well into T3. Some of us feel an immediate effect if some T3 is added to T4 but the fact that your dose is so low probably that's the reason.

You have to become pro-active as many of us on this forum have done. 

When you have a blood test for thyroid hormones it should be the earliest. Don't eat before it. Leave approx 24 hours between the last dose of levo and the blood test. This allows the TSH to be highest as that's what they seem to rely upon for diagnosis and considering it varies throughout the 24 hours it seems ridiculous to be. To ignore FT4 and FT3.

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

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

[Jose651 in reply to shaws]

Hi shaws, 

Did I read that Eltroxin is available in the South of Ireland?   

I was taking it for many years and found it far superior. Maybe lampie could ask for those  as well as following both Marz and your advice

J

[shaws in reply to Jose651]

I don't know whether Eltroxin is available in Ireland. It used to be prescribed and was the only brand named levothyroxine, the others being generic. I'm not sure if it is being produced again. I do know many thought it superior to generic.

[helvella in reply to shaws]

MercuryPharma levothyroxine is sold as Eltroxin in Ireland.

Whether it is identical to the UK product - or not - is unclear.

I have never seen a report from anyone who swaps between UK MercuryPharma levothyroxine and MercuryPharma Eltroxin from Ireland. Maybe someone moves between the two countries every few months and so ends up changing medicine?

That would be interesting.

My suspicion is that the two products will be found to be absolutely identical. If there has been any change over the years (e.g. since UK Eltroxin disappeared), they will have applied to both products. It wouldn't be the first time I have been wrong, though!

[shaws in reply to helvella]

Most probably you're right.

[Hidden in reply to Jose651]

Hi - I'm actually registered in Northern Ireland so I get my prescriptions from the NHS.  I'm studying in Dublin however and with my EHIC card I can get free prescriptions (minus a government levy) in the south ... I do recall a GP mentioning Eltroxin rather than levothyroxine so maybe it is available

[helvella in reply to Hidden]

lampie,

If you - or @Crinfly - do swap, please post with your experience.

I really want to know if there is any perceptible difference.

[Hidden in reply to helvella]

Will do!

[Crlnfly in reply to Jose651]

Hi yes eltroxin is available in southern Ireland,  that's where I live ☺ have been on it for 10 years but changed to NDT late last year x

[Hidden in reply to shaws]

Thanks for the reply!!

That's really interesting about how to prepare for thyroid blood tests - I always eat before and take my levothyroxine that morning too, I've never been told to do otherwise!

I'm still a little confused though, is my dosage of T4 still too low if my TSH is at a normal level?  I was worrying a little about having gone up to 50mcgs without being told to but at least now I feel a little easier about it.

[Marz in reply to Hidden]

Yes your dose is far too low.  The TSH is usually better around 1 or under when on medication - I have read.  Normal is an opinion not a result.  T4 used to be prescribed by weight ( my doggie is   ) - I think it is 1.8 T4 per kg.

[shaws in reply to Hidden]

It's only by trial and error the above suggestion has come around. Doctors don't know much about treating and it's not really their fault as they aren't trained about how metabolism is affected (that's the whole body) by insufficient hormones. 50mcg is a starting dose (25mcg an incremental dose) and you should get a blood test in around 6 weeks following the above suggestion and before the blood tests and levo were introduced we were given increases of NDT until we were well. Nowadays, I think the treatment is a bit like 'painting by numbers'. Look at print-out and usually 'do nothing' as results are 'anywhere in range' ignorance of clinical symptoms.

[headinjuryhypo]

If your hypothyroidism is caused not by the thyroid gland itself but by failure of your pituitary gland to stimulate it, then maybe your pituitary could be misbehaving in other ways too. Eg, growth hormone deficiency can cause fatigue, muscle weakness and brain fog. And cortisol deficiency (caused by a failure of the pituitary to produce ACTH) can cause dizziness. Why don't you get checked out for hypopituitarism - particularly if you've ever had a head injury as there is a sizeable risk of pituitary damage after that, and even after concussion - and even if you haven't had a head injury, there are other possible causes for hypopituitarism. Just google GHD and secondary adrenal insufficiency (SAI) and see what you think.

One final note - if you do decide to get tested, take the results of the short synacthen test with a pinch of salt, as it is only reliable for primary hypoadrenalism (Addison's disease). @[]

[DisneyMuse in reply to headinjuryhypo]

Hello! I am new to these forums and am so glad I found them I'm already learning helpful things (though live in the U.S., not the U.K.)! I had a total thyroidectomy last July and have been having a terrible time with the meds issues. I'm pretty fed up. What I wanted to say is that I'm VERY happy you mentioned GHD because I know that's an issue for me, but I forget it (my brain fog has been with me for at least 40 of my 58 years, and worse now than ever) and it's also NEVER addressed or mentioned. I'll be asking about addressing it now

[Chris1961 in reply to DisneyMuse]

I had radio iodine , what are yr symptoms ??? ... 

[Jose651 in reply to headinjuryhypo]

Thank you for that information about hypopituitarism. I had a fall 8 months ago that resulted in Head injury. 

I will read up on it .

J

👍

[headinjuryhypo]

I'm glad the hypopituitarism info might apply. I wish you the best of luck investigating it. For some reason people experience terrible difficulties getting diagnosed, so I hope you'll google a lot, and - basically - don't believe anything any endo tells you without checking the research!

[Foxylady1066]

I read out your symptoms of brain fog, tiredness etc to my husband, he thought I was describing myself..... Obviously it's common to many who have a thyroid problem, some days I literally do nothing... I feel for you being so young. My doctor often says well you are the wrong side of 50, what she doesn't get is age shouldn't have anything to do with it, we should all be able to live a full active life, without being crippled by an under active thyroid. According to the doctors my levels are now within range, I take 100mcgs a day.