Now in limbo

[Chickenlife]

Returned to my doctor the other week as requested by her - she was off sick (hopefully not a thyroid issue) so saw another doctor. The results of the private bloods I had done were not in my notes neither was the list of symptoms I brought in the last time i went. Not surprisingly there was no reply from any endo ( last visit the doctor said she would ask for advice from an endo regarding my high antibodies). So it was a wasted appointment as this doctor tried to also fob me off with antidepressants. I said no of course. She asked what I wanted to do - I guess I’ll just go away until I get worse was my reply. Which she more or less agreed with! So I am taking my supplements and carrying on but the thought of another winter being thoroughly miserable from being cold all the time is filling me with dread. It’s not the worst of my symptoms but is the most consistent as it’s always there. If I feel this bad when my results are ‘in range’ how will I feel if they ever go out? This whole experience and reading everyone else’s experiences has opened my eyes and I don’t like a lot that I see!

[Peanut31]

Hi

I’ve briefly looked at your results from previous posts, and see you have Hashimoto’s.

Unfortunately, as your TSH is not 10 or over, you will struggle to get any NHS GP to start you on thyroid medication. This is standard practice unless you find a very sympathetic GP, that’s willing to ignore NHS guidelines.

This was my situation but with a private Endocrinologist.

When I saw a private Endocrinologist he diagnosed me with Hashimoto’s, and after I did private thyroid testing my TSH was around 6.

He said no medication would help.

Eventually my TSH results got worse as did my health, TSH 12.2 and my GP stepped in with Levothyroxine.

Unfortunately Levothyroxine has not helped, and despite self medicating I’m not feeling great. However, I have cortisol issues as well.

My advice would be make sure your vitamins levels are good (you can supplement with those without GP’s help), go gluten free to help with antibodies.

Many on here are forced to self medicate because we don’t feel well and can’t wait until our TSH hits 10, but if you choose to do this, you must monitor yourself with private bloods etc etc.

Best wishes

Peanut31

[Chickenlife in reply to Peanut31]

Thanks for your reply. I understand that at my current levels I won’t be treated (treatment seems to open up a whole other world of issues as well) but I really hoped for a bit more from the gp rather than them jumping on the depression band wagon! To be taken seriously would have been a start, to try and understand and want to monitor the situation but all I got was the offer of antidepressants and a leaflet about self referring for counselling! So many are fighting to get the right treatment when their levels are out of range it’s such a shame the doctors seem to work like machines and not humans - where is the empathy.

[Peanut31 in reply to Chickenlife]

Hi

Yes, I agree 100%, my Endocrinologist tried to fob me off with anti depressants as well.

Luckily by this time I had joined this forum and I get more educated on my issues.

Anti depressants are the last thing I needed, but I never got the thyroid medication I needed despite showing him all my own private blood tests.

I learnt about the NHS guidelines about treating thyroid later on, I truly believe that because I was left to get worse, my slow recovery is because of this.

Best wishes

Peanut31

[shaws Administrator]

If they suggest 'depression' I'd ask for your Free T3 to be tested as T3 can be prescribed - even if patient isn't hypo - if a patient is diagnosed as 'depressed'. Our (Hypo) symptoms of depression can be treated with liothyronine (T3).

restartmed.com/t3-thyroid-h...

thyroiduk.org.uk/tuk/about_...

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

What you have to try to ensure (if GP agreeable) to test your Frees i.e. FT4 and FT3 and this is the reason. You can get them privately from one of the TUK recommended labs who do home pin-prick tests.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24hours between last dose of levo and test and take afterwards. This helps keep the TSH at its hightest and may prevent an adjustment being made to 'fit' you into a range.

[Chickenlife in reply to shaws]

Thanks for your reply.

My private results below show my FT3 isn’t that bad so I don’t think I would get anywhere with that. I definitely feel down because of my physical symptoms and not the other way around which I told the doctor. But because a condition has a blood test they rely on that (solely) for a diagnosis yet there is no blood test for depression so they decide based on symptoms! Doesn’t make sense.

TSH: 2.71 (0.27-4.3)

FT4: 15.4 (12-23)

FT3: 5.21 (3.1-6.8)

T4: 83.5 (66-181)

TPO: 42 (0-34)

TGAB: 225 (0-115)

[shaws Administrator in reply to Chickenlife]

As your TSH is not around 1 or lower maybe a combination of T3/T4 may work best for you, bearing in mind I am not medically qualified but the aim of thyroid hormone replacements is to remove all symptoms. Oh, life was much eaiser when there were no blood tests at all but all depended upon the skills of our doctors and knowing/treating our clinical symptoms and NDT gradually increased until we free of them.

Your antibodies can be reduced if you go gluten-free.

[SlowDragon Administrator]

Can see from previous posts you are getting vitamins optimal by lots of supplements

Are you currently on strictly gluten free diet?

If not ask GP for coeliac blood test before trying it for 3-6 months

[Chickenlife in reply to SlowDragon]

Thanks . I was considering trying gluten free after few months on supplements and retesting. I am loathed to go back to the doctors are there any private labs I could use for coeliac testing?

[shaws Administrator in reply to Chickenlife]

You could enquire from our recommended labs if they do the test you want.

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

[SlowDragon Administrator in reply to Chickenlife]

Yes - very easy test £19.99

healthcheckshop.co.uk/store...

If you test positive you need to remain on gluten rich diet until endoscopy (max 6 week wait)

If test negative can change immediately to strictly gluten free diet

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

If, after 3-6 months you don't notice any improvement then, getting antibodies retested to see if lower, before reintroducing gluten to see if symptoms get worse

[Chickenlife in reply to SlowDragon]

Thank you. Have ordered a test today.

[Chickenlife in reply to SlowDragon]

Negative for coeliac. I kind of thought I would be as I did have some investigations a few years back because of my constant poorly tummy and I would have hoped (but you never know with doctors!) they would have tested for it. Despite blood tests, a colonoscopy and biopsies they never gave me a diagnosis just said it was likely ibs. Anyway I will be requesting all my blood tests results from the last few years so I can have a proper look. I will try gluten free once I have been on the supplements a couple of months and retested.

Thanks for your help.

[SlowDragon Administrator in reply to Chickenlife]

I was misadvised by medics for 20years that negative coeliac test meant I didn't have gluten intolerance

Coeliac and gluten intolerance are different. The only way to know if gluten intolerant is to try it

Perhaps look at getting DIO2 or Thyroid DNA traits tested

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

bluehorizonmedicals.co.uk/t...

[lynnlouc]

Neither do I. Rationing is in full swing methinks. If you dare to raise any symptom they will either dismiss you out of hand or they label you with 'chronic fatigue syndrome' or needing anti-depressants. The lack of knowledge about thyroid at GP level is a national disgrace and so is the pathetic change in the way T3 is prescribed - needing to go to an endo to get a pill prescribed? That's only because they are stupid enough to pay hundreds of pounds for T3 when it costs 1 euro 50 cents in Greece! We pay hundreds of pounds for the same packet of pills!!!!!! So instead of sacking the Purchasing staff for such a travesty - they withdraw T3 - leaving people with conversion problems in an impossible position. Wrong answer eh.