When your doctor won;t prescribe thyroxine

[Simonsky]

I've suffered from M.E symptoms for nearly 18 years and consistently throughout this period my thyroid tests (as administered by the doctor) have shown to be 'normal'. I'm aware that there is a literature showing that those with 'normal' levels have benefited from Thyroxine often prescribed by 'controversial' doctors. like the Late Dr. Skinner.

After 18 years of fatigue, depression, brain fog that has wrecked my life and made my experience of being a parent very stressful I am desperate to try thyroxine even at a low dose (25mg?) just to see if it helps so I can at least eliminate it if it doesn't, But my doctors would never prescribe it.

I'm not sure I want to try Armour so is there any source of Thyroxine short of of going to a pharmacy with a gun and demanding it?

Yours in desperation!

[Lora7again]

Can you tell us what your normal results are? We need TSH, T4 and T3 and any vitamin levels you might have like B12, Iron and Ferritin, Vitamin D and Folate.

You can buy Levothyroxine online if you need to and it is not that expensive but we first need to see your results.

[Simonsky in reply to Lora7again]

Thanks -I assume I can get those levels from the results of previous tests? BY asking the doctor, or do I need new tests done privately by a lab?

[Lora7again in reply to Simonsky]

You are entitled to see all your results and records because it is the law. I usually log into Patient Access which should be available to most GP surgeries. If your surgery does not have that you can ask them for a print out of your results. Once you have them you can put them on here for members to help and advise you further.

[Lora7again in reply to Lora7again]

Just to add I would pay to have a private blood test if you can afford it because it will be more detailed than the NHS Labs. I and a lot of other members use Medichecks because you can get discounts through this site.

[AmberBee in reply to Lora7again]

Never realised there were discounts via medichecks, what codes do we use please?

[Marz]

Two years ago in your post you were given lots of good advice about the tests needed and the way forward ... did you have them done ,?

[Lora7again in reply to Marz]

Perhaps he just gave up ... I did for several years and just lay in bed.

[Simonsky in reply to Marz]

As others suggested, lethargy and depression took over and after so many years of struggle motivation is hard to come by. I will try this time!!!

[Lora7again]

I have felt desperate myself so please let us help you x

[SlowDragon Administrator]

First step is to get hold of ALL previous test results and ranges

You are legally untitled to results and ranges

Easiest way (if available) is to register for online access to your medical records including test results

But some surgery's still don't have test results online (even though all supposed to offer this by 2016)

If not available.....ask for printed copies if results

Come back with new post once you get results

Members can advise on next steps

All thyroid tests should be done as early as possible in morning before eating or drinking any thing apart from water

Important to test BOTH TPO and TG thyroid antibodies

Also vitamin D, folate, ferritin and B12

Is there any close family members with autoimmune diseases

Have you ever had Glandular fever, bump on head, whiplash, Lyme disease ....

[Hidden in reply to SlowDragon]

I am curious as to your reference to Glandular Fever in your reply. Is this a factor in hypothyroidism? I have had that and remember some of its symptoms being similar but 100 times worse and has left its mark on aspects of my general health

[FancyPants54 in reply to Hidden]

The lovely Dr Peatfield told me that something like 70% of his patients for hypothyroidism had glandular fever in younger years.

[LindaC in reply to Hidden]

Glandular Fever certainly figures in CFS too - 2010 Dr Skinner glanced over my A4 Health History Sheet, asked a couple of Q's and said, "You've had EBV - THAT'S why you had such fatigue from Sept 1979 - after trialling Levo, got me on Armour and for a while it helped. Those [supposedly] treating CFS have no such interest. D P also said, "Yes, and you're going to need T3 for life". GPs/endos scoffed at those people! Not fit to clean their boots.

[Hidden in reply to LindaC]

I’m spitting nails at their arrogance!

[LindaC in reply to Hidden]

You have no idea what I'm spitting...

[Hillwoman in reply to Hidden]

Other infections have been implicated too, with hypothyroidism, ME (of course, this is a post-viral syndrome) and CFS.

[GHughes2 in reply to SlowDragon]

Hello SlowDragon

A very good point with the Glandular Fever/EBV connection. I have asked several other Hypothyroid friends and people I know if they'd had glandular fever in the past and most of them including myself have had it.

Here's a reference:-

ncbi.nlm.nih.gov/pmc/articl...

Cheers

Gayle

[Howard39 in reply to GHughes2]

Many people who have had glandular fever go on to have ME.

That said a diagnosis by a GP re ME means diddly squat.

It’s supposed to be Chronic fatigue plus pain/ raised esr equals ME with a mitochondrial function test.

[SlowDragon Administrator in reply to GHughes2]

Yes EBV (Glandular Fever) can be trigger for hashimoto's

All my links re this are on my iPad ...but currently away on holiday and no WiFi

Search Epstein Barr and Hashimoto's

Thyroid pharmacist website has info

And here

drhedberg.com/epstein-barr-...

[paulaelizabeth]

Please do get those tests done Simonsky and establish if you need thyroxine. I too was diagnosed with ME and was very ill for 10 years until I started on thyroid meds. It changed my life, maybe it will help yours.

[Timetraveler67]

Dear simonsky I also have had m.e. For over 20 years there are no words to describe what this deliberating disease has taken from me so I can sympathise with you. I started levo 3 years ago but had to keep stopping due to intolerance. Taking levothyroxin has made no difference to my M.E. Symptoms but we are all different and you may feel better taking it. I just wanted to share that with you and also to say I wish you well and if you do decide to take T4 I hope it works and you start to feel better x

[Howard39]

I now know I had glandular fever which started my v v high esr then after years of knock backs I went straight to a specialist.

The information is right you need those bloods.

You could read drmyhill.co.uk as the leading ME consultant her in the UK and an Endo for 16 years. She set up the web site so people without a specialist could have lots of help. There are many chapters to read. The best one is found by placing orchestra in the top right hand corner of the home page.

She takes you through:-

Diet

Absorption

Vitamins

Then the adrenal gland and the thyroid.

I totally agree you need to invest in those bloods. I’ll guess you’ve only had a tsh test which is meaningless. Please bypass the GP and pay for the thyroid tests plus vitamins. I receive a discount off Genova so I did ( as I recall) the equivalent of thyroid plus 11.

It’s a finger prick test but you can pay to have a nurse do the draw for a fee. Sorry I’ve not checked with any one if that last part is available at this minute re covid. I just about managed mine. When I saw a consultant she told me mine were “ the worst she’d seen”. I also had red cell magnesium tested also the mitochondrial function test.

You may have ME you may not. It’s the same process, apart from a few additional vitamins and protocols.

Good luck. I could have saved my self 10 years of hell, whilst working a full time job, if I’d known more earlier. I had no t3 amongst many things.