What should I tell my new GP?

[Pinkcosmo]

Hello lovely wise people!

I haven't posted for a while, but I have been reading and learning thanks to all the info supplied after my post nearly 2yrs ago (when an endocrinologist discharged me back to the GP with no further action but pointing out that a T3 prescription may be available on private practice.)

I spent the following year trying to improve things for myself by going gluten-free, optimising vitamins, etc. but I didn't notice any improvement in my symptoms and just felt so miserable that I changed from Levo to self-medicate with Thyroid-S in January this year.

I did private blood tests before and after 5 months, by which time I had built the dose up to 2.5 grains a day based on how I felt, blood pressure, temperature and resting pulse readings. (All came up from low to normal levels).

07/12/2022 (125mcg Levo daily)

TSH 0.15 mu/L LOW (range 0.27 - 4.2 mU/L)

FT4 18.1 pmol/L (range 12 - 22 pmol/L)

FT3 3.8 pmol/L (range 3.1 - 6.8 pmol/L)

22/05/2023 (Thyroid-S 2.5 grains)

TSH <0.01 mu/L LOW (range 0.27 - 4.2 mU/L)

FT4 18.4 pmol/L (range 12 - 22 pmol/L)

FT3 8.1 pmol/L HIGH (range 3.1 - 6.8 pmol/L)

Because the FT3 reading was high, I dropped back to 2 grains a day.

I have not been in touch with my GP practice since the endo appointment in Dec 2021, but they recently requested routine blood tests.

(taken as recommended on here concerning dose, time, supplements, etc.)

My new GP now wants me to make an appointment to discuss these results:

4 Sep 2023

Serum TSH level < 0.01 mu/L 0.30 - 5.50 Abnormal

Serum free T4 level 11.1 pmol/L 11.5 - 22.7 Abnormal

Serum cholesterol 5.8 mmol/L 0.0 - 5.0 Abnormal

(for reference: 9 Jul 2021 Serum cholesterol 5.3 mmol/L 0.0 - 5.0 Abnormal - no action)

Se non HDL cholesterol level 4.0 mmol/L 0.0 - 2.5 Abnormal

(for reference: 9 Jul 2021 Se non HDL cholesterol level 3.9 mmol/L 0.0 - 2.5 Abnormal - no action)

My red blood cell count was slightly over the range too.

No FT3 reading.

Everything else: serum lipids, glomerular filtration rates, liver function test, serum electrolytes, full blood count, 'normal'.

I know without a FT3 reading it's hard to draw any conclusions about how well I'm doing on this dose of Thyroid-S but I was surprised that my FT4 has dropped from 18.4 in May to 11.1 now. Does this mean I need to add some Levo into the mix?

Symptom wise I have been doing OK. I have enough energy for a daily walk, housework, etc. and my mood is certainly better. I'm not losing weight but not gaining either, so I count that as a win! I won't know about the dreaded feeling cold to the bone until the weather here cools down.

My blood pressure has dropped a bit but the only ongoing problematic symptom I have is fairly mild daily headaches. Sometimes they are more severe and wake me in the night. They are pretty much constant with the occasional migraine thrown in. Could the headaches be because the FT4 is low?

Any advice for the appointment with my new GP?

Is the high cholesterol something I should be treated for?

Should I tell him about the Thyroid-S or will this be held against me?

As always, all advice is very gratefully received!

[SlowDragon Administrator]

Suggest you get FULL thyroid and vitamin testing done yourself BEFORE consultation

Obviously essential to test Ft3

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

day before test split Thyroid -S as 2 smaller doses spread through the day with last dose 8-12 hours before test

What vitamin supplements are you taking

Presumably you have autoimmune thyroid disease (hashimoto’s) as you also have PCOS

Metformin lowers TSH

cureus.com/articles/50564-e...

Are you on gluten free or dairy free diet

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...

Lastly….if not signed the petition please consider doing so

petition.parliament.uk/peti...

[SlowDragon Administrator]

looking at previous post with results

healthunlocked.com/thyroidu...

What happened about terrible B12 levels

Metformin also lowers B12

Apparently negative antibodies for Hashimoto’s

Have you ever had Ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

[Pinkcosmo in reply to SlowDragon]

Hi SlowDragon. Thank you for replying so quickly! I always follow the testing protocol now I know the tips from here. I take BetterYou D3000 + K2 Oral Spray and Pure Encapsulations - Vitamin B-Complex Plus with Active Folate. I do have autoimmune thyroid disease and had high antibodies when first diagnosed but diet improvements seem to have helped when last tested. I only took Metformin for a year many years ago - couldn't get on with the digestive issues - I will update my profile now! My GP didn't go any further with B12 levels - he said everything was good from his blood test results so I hoped supplementing would be good enough. I've never had an ultrasound. GP did a coeliac blood test when first diagnosed - negative. I try to be gluten-free and am most of the time but really should try harder. I will order a full blood test with Vits now. I have signed the petition 👍🏻 Thank you!

[greygoose]

Is the high cholesterol something I should be treated for?

Absolutely not. High cholesterol is a symptom, not a disease. As your FT4 dropped so dramatically, it's possible that your FT3 did, too. And low T3 is very often the cause of high cholesterol. It might have been better to drop your NDT by 1/4 grain, rather than half a grain.

But, even if it isn't in your case, statins can do more harm than good and are not recommended for hypos, anyway. And the raised cholesterol won't harm you. It does not cause heart attacks or strokes as doctors claim.

[Pinkcosmo in reply to greygoose]

Thank you greygoose. First class response as always! I've just ordered an advanced thyroid + vitamin test to check on FT3 levels.

[greygoose in reply to Pinkcosmo]

You're welcome.

[MrPeaPaw]

If you felt well on 2.5 grains, why worry about the FT3 level being a little high? Did you feel over medicated?

[Pinkcosmo in reply to MrPeaPaw]

Sorry I posted a reply without clicking reply! See below.

[Pinkcosmo]

I felt amazing - so much energy. Then my hubby commented that I may be overmedicated when he came home and found me clearing out the roof space in the garage. I took the blood test and think it was a bit of a shock seeing the graph of the results. I have always believed being over-medicated was bad for the heart?

T3 results chart

[MrPeaPaw in reply to Pinkcosmo]

Those results are not shocking. Do what need to do in order to feel well.

[pennyannie in reply to Pinkcosmo]

Hello Pinkcosmo :

Do you have a time scale on this graph showing your T3 slightly over range - as mine would be similar around 10/12 hours from taking my Thyroid S.

Do you split your dose of Thyroid S ?

The ranges and guidelines were introduced alongside Big Pharma's launch of synthetic T3 and T4 thyroid medications - launched on the back of NDT - and who then went about claiming market share by fair means or foul.

With NDT you dose to the relief of symptoms - there are no specific blood tests - so I think you know where you feel better :

When optimally medicated on NDT you will likely have a low suppressed TSH and your T4 likely lower than when on synthetic but your T3 proportionately much higher :

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels - I now just run a yearly full thyroid panel and aim to maintain my ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100:

My weight was the last bonus when taking NDT and after around a year found I had dropped around couple of sizes.

Maybe 2 + 1/4 grains would be worth a try ?

[Pinkcosmo in reply to pennyannie]

Thank you for your reply. I normally take it all first thing otherwise there is a good chance that I will forget but I spit it before the blood test as recommended here and took one grain about 12 hours before. I will go up to 2 1/4 and see how I feel. I've ordered a full blood test to check vitamins, etc and have made a note of your target levels for reference. Finger crossed for weight loss!

[pennyannie in reply to Pinkcosmo]

Ok then - yes - the weight loss was a bonus for me - as I'd lived with that issue since a child - I'm Graves post RAI thyroid ablation in 2005 and around 10 years after T4 monotherapy I thought I was dealing with dementia s I couldn't read and digest and back to my days at school dealing with undiagnosed dyslexia :

Now my brain is turned ' on ' for the most part of the day and am much improved and have advised my surgery of my actions and no longer receive a prescription for T4 or caught up in the yearly thyroid function test razzmatazz.

[pennyannie in reply to Pinkcosmo]

So the September 2023 result is from a split dose and this does not mean you need to add back in some T4 ;

there is unique ratio of T3/ T4 in each grain of Thyroid S -- 9 mcg T3 + 38 mcg T4 so roughly around a 1/4 ratio -

so adding in extra T3 or T4 just so your blood tests ' look ' more like you think they should look is not the answer :

With NDT you dose to the relied of symptoms and not a blood test result/range and track on the T3 reading :

[Pinkcosmo in reply to pennyannie]

Yes. But no T3 result.

[pennyannie in reply to Pinkcosmo]

Well yes, I know - getting a T3 result through the NHS is near impossible even if you have a NHS prescription for T3 - and why so many of us have to resort to running our own private blood tests.

But how were you feeling - as with NDT it's all about symptom relief :

I know it must be strange saying such a ' thing ' when for years your symptoms have remained basically unresolved on T4 monotherapy - and you've pushed through likely accepting that that was just ' you ' and ' your lot ' !!

I linked you into another post -

basically when you run your private blood test - take the blood draw BEFORE you take your NDT for that day - that will give us the most realistic reading when dosing NDT once daily - so you will be leaving around a 24 hour window from last dose to blood draw.

[Pinkcosmo in reply to pennyannie]

Yes, thank you - I've just read that post. I will do that for my private test next week. I started NDT in January, probably feeling worse than I had for years - I just wanted to hibernate. Within weeks I felt dramatically different and by March friends noticed a change in my personality. I'm so pleased I took matters into my own hands - just regret not doing it years ago!

[serenfach]

The Thyroid - S batches are slightly variable in strength, but given that you did not feel ill on the dose you were on, I would creep back up a bit. You would feel ill if you were overdosed.

Tell the new GP that an Endo said you needed extra T3 but he would not prescribe it, so you found a way to get that extra. You will probably find he knows nothing about NDT so just explain it is T4 and T3 in one pill. If he does know something about it and is against it, explain that it was used for over 60 years with no problems. It is your body and your risk, but tell him you would dread going back to T4 alone and will not do it.

Now can you nip round and clear out my attic for me?

[Pinkcosmo in reply to serenfach]

Thank you for your reply. Great info for the GP. Don't think I can put him off until I've got the results of my private Blood tests so I'll go with what you have suggested. I'm going to try an increase to 2 1/4 grains and see how I go. Think I might tackle decorating next!

[Noelnoel]

Lovely to read a success story