Help with Results!

[LRowe]

Hi Everyone,

This follows on from my previous post...

I've finally got a copy of my last bloods. Doctor has said they're all normal. This is despite me having pain on a daily basis in my joints, constantly tired, drained and brain fog. Doctor has referred me to Rheumatologist and told me today he thinks It's chronic fatigue?! also testing bloods again on Wednesday morning as I got really upset and told him I cannot continue like this!

I can't help wondering whether it is to do with my lack of Thyroid (TT in 2009 owing to Papillary Thyroid cancer)

Any help in understanding these bloods greatly appreciated!

[ShinyB]

I'm not an expert, but I'd think you'd really need to get your free T4 and free T3 tested too. It may be that the T4 in the levo you're taking - that you mention in your other post - is not converting to T3 very well.

I would push to have these tested or, if you can afford it, get them tested privately via somewhere like medichecks.com.

Hope you get some answers soon.

PS Also, I think I'm right in saying your ferritin should ideally be 70 or more, to help the body convert T4 to T3.

[LRowe in reply to ShinyB]

Thanks for your response ShinyB. I have an appointment in 2 weeks with my Consultant for my yearly check up regarding Thyroid etc so plan to discuss more with him and will question my T3 and T4.

[SlowDragon Administrator]

There's only ferritin and TSH there in relation to thyroid

This is completely inadequate.

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test FT3 and FT4, plus all these vitamins

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. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

Meanwhile while getting private tests organised you could consider starting supplementing vitamin C to support adrenal, selenium to help conversion and avoiding absolutely all soya, including soya lecithin

[LRowe in reply to SlowDragon]

Thanks for your response SlowDragon. I wasn't aware Soya could have an impact!

Doctor is testing my vitamin D, folate, ferritin and B12 on Wednesday morning. Will see what those bloods come back showing.

[Nanaedake in reply to LRowe]

What did your bloods come back showing and did you have low vitamin D?

[LRowe in reply to Nanaedake]

They've come back as normal!

I'm at a complete loss to be honest. My endo said it's highly unlikely to do with my Thyroid or lack of one and the fact I've now been on Thyroxine for 9 years it will not be possible that my body isn't absorbing it properly!

I'm due to see Rheumatologist in August.

[Nanaedake in reply to LRowe]

When you say they've come back normal, is that the Endo's opinion and did you get a copy of the results?

[LRowe in reply to Nanaedake]

My Endo told me they were normal and to ensure I'm taking my Thyroxine daily.

I've literally just come back from seeing Rhuematologist who was astounded I was functioning properly and told me my last blood test in May says my tsh was at 43 and ten times what it should be!

She's taken all my bloods again and advised that all my problems are no doubt because my Thyroid (even though I don't have one) is way off! To say I'm furious with my Endo is an understatement.

[Nanaedake in reply to LRowe]

Always get a copy of your results with the lab ranges or register online for access to blood test results. I'm not surprised you are mad. On this forum we've all learned we have to take control.

[Nanaedake in reply to LRowe]

Just wondering how you are now? I also had bone, joint and muscle pain. Turns out I've got osteoporosis after 7 years or more of telling the doctor at my yearly appointment, I've got bone pain. It could be worth having a DEXA scan. Have you contacted Butterfly Thyroid Cancer Trust? They might be able to give you some information and advice.

[LRowe in reply to Nanaedake]

Thanks for your reply, I hadn't heard of Butterfly Thyroid Cancer trust, I will look into.

I'm pretty much the same, some days are worse than others. Have noted that I get worse just before my period, not sure if connected.

My Doctors surgery rang the other day to say the doctor has requested my bloods are done again in 3 months. I asked what he has said to be told your tsh is still elevated at 6.8 so they want to repeat bloods in 3 months. That's it, nothing else just continue as I am. I cannot begin to describe how frustrated and down I am feeling in between the tiredness, pain, mental fog, inability to lose weight etc.

My husband wants me to go in and see the doctor again but in truth I feel it's a total waste of time, I've been doing this over a year now and I'm getting nowhere. However, reading your post it looks like it took you an awfully long time to get to the bottom of things!

[Nanaedake in reply to LRowe]

Yes, it took me a long time so keep going back until you get the help you need. Clearly there is a problem. Not everything shows in blood tests. Bone density and calcium deficiency for example. If you are deficient in calcium your body will rob your bones of their calcium store to keep your blood balanced and it might not show in your blood.

[Nanaedake in reply to LRowe]

If around menopausal age and parathyroid function has been disrupted then perhaps it's causing problems? If in the UK, contact Butterfly Thyroid Cancer Trust for advice.

[HypoHden]

Have you looked into diet at all? If you haven't already, I'd consider removing dairy and gluten. These things both cause me joint pain, along with a lot of other food intolerance's.

Also, have you checked for rheumatoid arthritis? My joint pain is improving with the carnivore diet, if you're not aware of it, it could be something to look into! It seems very extreme, but if it can help then it's worth it! Even just a 30 day try and if it doesn't work then you can always disregard it.

This website has a list of peoples experiences, the link will take you to joint pain related ones: meatheals.com/category/join...