Blood Results

[Poppiemae]

Hi everyone, still feeling very poorly after 7/8 months on Levothyroxine. I have Hashimotos and GP not listening to my symptoms 😔 Back to GP this afternoon , bloods tests done private, please can anyone share their views / opinions on my results. Thank you so much.

[ShinyB]

Hi Poppiemae How much levothyroxine are you taking? Have you had any increases in your dosage in those 7/8 months? Also, have you tried cutting out gluten which seems to help many people with hashimoto's?

[Poppiemae in reply to ShinyB]

Hi and thank you I have been gluten free for 5 weeks. I started on 50mg of Levo than went to 75mg l have been on 100mg since November. GP wanted to lower it 3weeks ago and I refused x

[Kell-E in reply to Poppiemae]

Many GPs look at TSH only. You were right to refuse a dose reduction. Many have commented that your fT3 & fT4 could both use improvement. You may benefit from a dose increase of Levo. If you find that once your frees are higher you are not improved symptom-wise, then you might consider adding T3 to your Levo.

[Poppiemae in reply to Kell-E]

Thank you GP will not up my Levo dose of 100mg , she wants to reduce it! 😔

[Kell-E in reply to Poppiemae]

So then, you have a few options. Find a more cooperative GP. Source your own Levo, T3, or NDT. People on this forum can help you find sources for each of those.

[Poppiemae in reply to Kell-E]

Thank you

[shaws Administrator]

You feel unwell as both Frees are too low. T3 in particular is below the bottom of the range.

Both FT4 and FT3 need to be nearer the upper part of the range. So it looks as if you aren't converting (inactive hormone) T4 into sufficient T3 (active hormone which drives our whole metabolism).

You have hashimoto's (an Autoimmune Thyroid Disease) due to antibodies being present. These antibodies attack the thyroid gland and wax and wane until you are hypo but both Hashi's and Hypo have the same treatment. (going gluten-free can reduce antibodies which wax and wane).

Other members will respond on your other results.

Ask GP if he will add some T3 (probably wont) to your T4. Many only take account of the TSH and if it is low will tell us we will have a heart or bone problems but we might develop these with insufficient thyroid hormones.

If GP isn't helpful you may have to source your own T3. The aim is to have both Frees in the top part of the range.

[Poppiemae in reply to shaws]

Thank you so much, I am gluten free, Have asked for a trial on T3 and GP has refused 😔 everyday is a struggle with fatigue and joint pain but GP assumes one pill fixes all. Clearly not I am worse now than when I started taking Levo back in July 😔

[shaws Administrator in reply to Poppiemae]

Your doctor states - one pill fixes all.

Yes, I do agree but I don't agree that it is only levothyroxine (T4) that will do so especially if dose is insufficient to reduce TSH to 1 or lower and doesn't allow for an optimum T3 and T4.

The reason is the professionals do not have hypothyroidism: have no clue about clinical symptoms: prescribe 'other' medications for the symptoms which haven't been resolved if dose is too low: TSH isn't 1 or lower: Free T4 and Free T3 are rarely tested:

Tick off your clinical symptoms on the list below. Say to your GP, 'if my dose was optimal all symptoms should have been resolved and give him a copy of the following with your symptoms ticked:-

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

thyroiduk.org.uk/tuk/testin... - highlight FT4 and FT3.

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

I don't think doctors' training covered hypothyroidism adequately. It seems they were told "if TSH reaches 10 diagnose". Prescribe levothyroxine until TSH is 'in range' (bearing in mind the top of the range is around 5). We feel better the lower the TSH - 1 or lower. In other countries their inhabitants are diagnosed if TSH goes above 3 with symptoms.

I don't think labs will do more than TSH and T4 maybe to save money. Instead the patient cannot work optimally due to the body not having sufficient energy as it doesn't get an optimum dose of replacement hormones.

You can source your own T3 if you wish but you'd have to put up a new post asking for a private message to be sent to you. Considering your FT3 is below the lowest. You maybe just need to add 5mcg (or 6.5mcg depends if it is 20mcg or 25mcg and you split the tablet) added to your dose of levo.

[Poppiemae in reply to shaws]

Thank you so much for all your help, advice and support. Just back from GP, no to T3 and testing my vit D levels , yes to checking my B12. Endo appointment in 6 weeks that’s on an urgent referral, GP willing to extradite this after seeing me today. See says only Endo can add T3 or Vit D for me 😔🙏🏻

[shaws Administrator in reply to Poppiemae]

I had no idea that they now wont test Vit D. Both Vit D and B12 are very important pro-hormones. They insist on giving us thyroid hormones which make some of us worse, yet wont do essential vitamins/minerals which may improve our condition.

[Dee8686]

I am still learning about all this and in no way consider myself an expert but.. I wonder if your t3 is too low? It seems low in range...

Wait for more of the wise and experienced ones to comment as I’m sure they will guide you! X

[Poppiemae in reply to Dee8686]

Thank you

[SlowDragon Administrator]

How much Levothyroxine are you taking?

Have you had vitamin D tested?

Your B12 is possibly too low. Anything under 70 is considered suspicious according to this link

viapath.co.uk/our-tests/act...

Ask GP to test B12

Your FT3 is very low, which suggests you need dose increase, but GP will only be looking at low TSH and unlikely to agree

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]

You could ask for list of recommended thyroid specialists too.

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

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

As you have Hashimoto's (high antibodies) are you on strictly gluten free diet?

If not suggest you ask GP to test for coeliac disease before trying it

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

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

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

[Poppiemae in reply to SlowDragon]

Thank you I’m taking 100mg of Levo and GP wants to lower it, I refused point blank 3 weeks ago as feel so poorly.

[SlowDragon Administrator in reply to Poppiemae]

Suggest you ask for vitamin D and B12 to be tested.

Low vitamin D can cause terrible joint and bone pain

Low B12 is extremely common. Should test for Pernicious Anaemia before starting any B12 supplements

I see you have gone gluten free. Noticed any improvements or changes?

Looks like you need the list of recommended thyroid specialists, some are T3 friendly

Email Thyroid UK

[e-mail]

[Poppiemae in reply to SlowDragon]

Thank you my B12 was tested (see above) have been gluten free for approx 5 weeks, less bloating but joint pain not improved. Brushing my hair, feeling kettle with watering is agony! I pull myself up the stairs as knee joints in pain and no energy. I have a rash on my face and now worrying I could have something else developing (Lupus) 😔 going to see GP later today x

[SlowDragon Administrator in reply to Poppiemae]

Rash on face can be due to Hashimoto's. (Goggle for images)

Low vitamin D causes terrible joint pain and extremely common with Hashimoto's

hypothyroidmom.com/92-of-ha...

Your active B12 test was low. Anything under 70 needs further investigation

GP unlikely to be used to active B12 test, so getting retested by NHS for normal B12 and for PA is good idea. If GP doesn't agree to testing, or to B12 injections, then you can just supplement with sublingual B12 instead but push for testing first

[Poppiemae in reply to SlowDragon]

Thank you so much for all your help and advice, you are amazing. I am crying here as people have listened and given more Than my GP ever does 🙏🏻😔

[ShinyB in reply to Poppiemae]

I know that feeling well!

Reading your reply above to Kell-E, I am wondering if you can go to a different GP. Or, you can ask for a referral to an endocrinologist for a second opinion.

And, as she said, failing that, you have the option to source your own meds. It's a scary leap, when we're used to relying on a GP, but many do it. And there is a lot of advice available both on this forum and on the Thyroid UK website.

Ah, I've just scrolled up and spotted that you've got an endo referral. That's great!

Best of luck and let us know how you get on

[Poppiemae in reply to ShinyB]

Thank you so much 🙏🏻😔

[Poppiemae in reply to ShinyB]

Hi ShinyB saw an Endo on Wednesday have been given a trial on T3 for 3 months praying it works 🙏🏻

[ShinyB in reply to Poppiemae]

Wow! Is that in the UK? Very few seem to give it these days! That's great news What have they suggested for dosing instructions?

[Poppiemae in reply to ShinyB]

Yes in Wales, my Levo has been reduced from 100mg to 75mg and 5mg T3 , 3 Times a day. I had my full bloods done privately before which showed my T3 below Thyroid UK guidelines. I think this clearly showed my body wasn’t converting T3 very well, with this evidence and my dreadful symptoms he agreed a trial. No improvement as yet infAct feeling worse as T4 a different brand to my normal tab, wondering if this could be the cause of my ‘flu like’ symptoms to intensified 🤔

[ShinyB in reply to Poppiemae]

It might be worth putting that as a new post, so that more people see it and can advise. One thing I have read on here is to try taking an antihistamine before taking your levothyroxine - it could be the fillers in the levothyroxine that you're reacting to. If you feel better for taking a antihistamine, this would show it's the fillers that are the problem. Best of luck to you and I really hope the T3 makes a big difference for you

[Poppiemae in reply to ShinyB]

🤗

[Poppiemae in reply to SlowDragon]

Hi Slow Dragon I have paid for Vit d tested as GP refused , my results * 44 nmol/L normal range *50 -200 nmol/L

This is what came with results -

Your vitamin D levels show that you have vitamin D insufficiency. This may progress to vitamin D deficiency if you don’t take steps to increase your vitamin D levels.

We recommend supplementing with 20-50 mcg (800 -2000 iu) of vitamin D per day for twelve weeks.

I am seeing a Endo later in April and not sure what Vit d to buy. I really don’t want to wait before starting Vit d as joint and muscle pain is horrendous ! Any advice greatly appreciated, thanks 🙂

[Angel_of_the_North in reply to Poppiemae]

No reason to lower it as TSH is well within range and both Free T4 and Free t3 are too low.

[Poppiemae in reply to Angel_of_the_North]

Thank you, so to improve Free T4 and Free T3 I need T3 is that correct? X

[Angel_of_the_North in reply to Poppiemae]

Maybe not. as they are both low in range. Although free T3 is lower in range than free T4, they are both poor.