Thyroxine - GP wants to reduce dose!

[JMN2017]

I joined this forum years ago but not had reason to post for some time but, now I would like some advice please.

Blood test results re Thyroid Function show very low TSH and high (out of range) Free T4 which has been like this for the last few years. I feel best with these levels, I have to say, but GPs at my surgery continually tell me I need to reduce my dose of Levithyroxine (150mcg daily) The more senior GPs accept this more readily, whereas the 'junior' ones don't like it.

Before developing hypothyroidism, I suspect my then 'normal' was at the very extreme of the normal ranges as it was many years before my blood tests suggested hypothyroidism, hence why I feel better when back at the extremes again.

Today, I had a phone call from the GP (trainee) that I've recently seen regarding a different issue (unrelated to this), is concerned because Free T4 is high, TSH low, as usual. When I explained this was how they had run for the last few years and I felt better at these levels, she tried to explain how such a raised FT4 was likely to cause problems such as Atrial Fibrillation in the future. No one has suggested this to me before but that doesn't mean it isn't the case, of course.

Is it documented anywhere that raised FT4 can cause AF, and maybe other health issues? I'd like to get more knowledgeable about this, please, but haven't managed to find anything about this, possibly due to incorrect use of key words to search.

So, just for completeness, here are my results from Dec 2022, 4 April 2023 and 1 July 2023

20 Dec 2022 – 8.30am (after Thyroxine)

TSH level 0.02 miu/L [0.27 - 4.2]

free T4 level 30.3 pmol/L [12.0 - 22.0]

4 April 2023 – 8.30am (Before Thyroxine)

Serum TSH level 0.08 miu/L [0.27 - 4.2]

Serum free T4 level 26.0 pmol/L [10.5 - 22.0]

1 June2023 – 1.30pm – (after Thyroxine)

Serum TSH level 0.05 miu/L [0.27 - 4.2];

Serum free T4 level 27.8 pmol/L [10.5 - 22.0]

I just feel I need a bit more Information and reason to argue the point

Many thanks for any advice and suggestions

[JMN2017]

Perhaps I should add that -

I'm in UK,

T3 isn't prescibed to anyone in UK (unless due to circumstances/consultant) and

have no anti-bodies

Thanks

[GlowCoach Administrator in reply to JMN2017]

Many thousands of people are prescribed T3 in the UK. Some through the NHS, others privately. You do need to pick the Endo that you are referred to carefully as some will never prescribe T3.

You can email [e-mail] for a list of T3 friendly Endo's.

Having antibodies is not a preclusion for prescribing T3.

[JMN2017 in reply to GlowCoach]

Thanks for this. Yes, I'll be contacting ThyroidUK to see who's recommended in my area (Suffolk)

[GlowCoach Administrator]

Looking back on your previous posts you're basically a poor converter.

On a previous private blood test (Apr 2017), my results were

TSH - 0.25 mIU/L [0.25-4.20]

Free T4 - 22.45 pmol/L [12-22]

Free T3 - 3.85 pmol/L [3.1-6.8]

Can we just check when you take your levo before a blood test? Is it just before the test or do you take it after the test as recommended here with a 24hour gap between last dose of levo & blood draw?

I see that you are injecting B12 but have you also been keepng an eye on ferritin, folate & d3?

What supplements are you taking?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

[JMN2017 in reply to GlowCoach]

Thanks, GlowCoach

Taking your questions in turn but, first, re being a poor converter, I've previously discussed this with GP who totally disagreed, of course. I then asked to see Endo so he reluctantly referred me. I can only guess what he wrote in the referral!!! I had a telephone consultation with a (well-respected) Endo which didn't go well. How on earth is a telephone consultation appropriate where physical aspects are so important! Also, as a student nurse, years ago, I didn't like him for some reason so, many years later (he must be well over retirement age) I hadn't changed my mind. So, he just looked a the blood results, said I was on too much thyroxine! Also, get this!!! B12 level (I inject B12) at 700 approx, is 'toxic' What a waste of time!

Thanks for the link to ThryroidUK.org. I think I'll request a private consultation and choose my own. Also, to request to see the referral letter before it's sent!!!

[GlowCoach Administrator in reply to JMN2017]

Find one that you might like to see then start a new post asking if people have seen that Endo and if they could send you a personal message with any feedback about them. The post will be locked as we are not allowed to discuss doctors in the open group. get full thyroid (TSH, FT4 & FT3) plus vitamins tested so you can take results to your first appointment to avoid wasting this first appt.

I saw 3 Endo's over the years on the NHS who would'nt prescribe, and now have a private Endo and am prescribed T3 in addition to levo. Its not that expensive with T3 costing around 50-60p per 20mcg tablet for Thybon-Henning.

[JMN2017 in reply to GlowCoach]

That sounds a good idea. Yes, I can understand why you would lock such a post. No problem. Will do as you suggest.

Thanks again

J

[JMN2017 in reply to JMN2017]

Continued ...

I usually omit my morning dose of Levothyroxine until after an early morning blood test, as indicated on my original post. However, I forgot in April testing and June testing was 1.30pm so, again, I forgot to omit Levothyroxine that morning. To be fair, I didn't know TFTs had been requested again as having blood test for other issues.

Folate - I've previously had high (over range) levels of Folate but this latest test, Serum folate level 5.1 ug/L [3.0 - 26.8]; I have to say, I've not been eating so well for a while which is why Folate is lower now. I'll definitely make efforts to eat more veg again LOL

Supplements - Iron - Ferritin levels were low - thinning hair with Vit C - helps absorption; Magnesium & Zinc (hair again); Vit D3 - was deficient but levels mid/high now;

Antibodies - none

As for having same brand Levothyroxine, I suspect I could arrange that, with some effort LOL

Again, Thanks very much

J

[GlowCoach Administrator in reply to JMN2017]

Be sure to take iron 4 hours away from Levo as it affects absorption.

Did you have a full iron panel done? Iron is complicated mineral and ferritin can be low yet iron itself high and vice versa so its best to be thorough and check as you dont want too much iron.

With low folate and if you are injecting B12 its recommended to take a good methyl/active B complex to keep all the B vits balanced. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Suggest you tell your GP you forgot and took Levo just before the test. Ask for a retest and get it right this time, take it after the test done early morning. If you take the B complex it contains biotin and you need to stop that 4 days before a thyroid blood test as it can interfere with the results.

[janeroar in reply to GlowCoach]

Hi GlowCoach

do you know where the liposomal b is made. It doesn’t say looking at the photos. I think we should be careful where we source our vitamins from. If from China there’s almost zero oversight over what goes in and whether there might be toxic ingredients.

[GlowCoach Administrator in reply to janeroar]

Hopefully this should put your mind at rest.

Pink Tribe details

[janeroar in reply to GlowCoach]

hi GlowCoach they are sold by this Chinese company. I can’t see them listed anywhere in UK - only a short search so I could be wrong. There’s poor English on the packaging and it would be weird that they’re made in UK by a Chinese company? Do they have a GMP certificate? This is what we should be looking for on any vitamin we buy in UK which is an assurance that what we are taking is really that. Sorry to bang on but I think it’s crucial for our health we aren’t taking stuff that could be dangerous

Text saying company is in China

[Hypopotamus in reply to JMN2017]

I take no thyroid meds for 24 hours prior to a blood test. On the odd occasion that I have forgotten, or they have sprung a blood test on me when I wasn't expecting it, I have also had to battle it out with various GPs who thought that I was over-medicated. One actually said that I couldn't have a prescription for any thyroid meds for three months when they would recheck my levels. I sorted her our PDQ.

[JMN2017]

Yes, I take Levo as soon as I get up in the morning. Iron is taken later in the day, ie lunchtime/tea time.

I think only Ferritin was tested rather than panel. It was prior to referral re thinning hair so needed Ferretin level higher than '70' (can't remember the units at the moment) My level was 39 hence the iron. Now a bit over 70 [whatever the units are]. My Hb has risen from +/- 11* to 134 g/L [115.0 - 165.0] and I actually have colour in my cheeks which I haven't had since before I was a teenager, if then Ha Ha Ha Must be doing something right LOL

"With low folate and if you are injecting B12 its recommended to take a good methyl/active B complex to keep all the B vits balanced. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft..."

I'll do something about that. Thanks for this info

Vit D with D2 - I know my levels now are great but don't think the capsules include D2. I'll check and make sure K2 is in my next order.

J

[SlowDragon Administrator]

Suggest you work on improving vitamin D, and add magnesium supplement too if not already taking……plus start vitamin B complex

Retest FULL thyroid and vitamin test at 8-9am with last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Have you tested BOTH TPO and TG antibodies

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...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

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...

only test early Monday or Tuesday morning

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

[JMN2017 in reply to SlowDragon]

Thanks SlowDragon , for all your information. I'll work my way through

J

[jrbarnes]

My FT4 was over range for years. It's the only way I can live on levothyroxine alone. My GP always tried to tell me the FT4 was too high and to lower it. I refused every time so he gave me an electrocardiogram every visit. My resting heart rate was just fine and no other heart problems to be found.

[SlowDragon Administrator]

over 62,000 prescriptions for T3 in England in last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

T3 on NHS has to be initially prescribed via endocrinologist

Thousands more people get private prescription

List of thyroid specialists and endocrinologists 

healthunlocked.com/thyroidu...

[JMN2017 in reply to SlowDragon]

Yes, I think I need to see a Private Endo to have a proper discussion. GPs not interested, not aware of various related issues etc and don't have time to discuss in the very short appt slots, even if they wanted to

Thanks

[Silverfire in reply to SlowDragon]

I've never seen an endocrinologist, my initial diagnosis was done by a dermatologist who was treating me for chronic urticaria.

[waveylines]

Generally they don't like your thyroid hormones out of range. Your ft4 is high & with a suppressed TSH I'm surprised the labs haven't tested the Ft 3 because of this. My local labs have started doing this because of my low TSH even though Ft4 is in range. I suspect the biggie is your Ft3 level..... Being the use able form. If that's over range then yes I'd definately consider lowering. If its in range then it becomes a debate. Not everyone is the same. I find the younger doctors seem to rely rigidly on pathways, older doctors who had to use their judgement prior to the event of computers are less rigid.If it were me I do a private full thyroid panel to cross check the Ft3.

As for are high levels of thyroid hormones linked to Afib. If the Ft3 is consistently over range then yes that's the worry. My old school Endo who was very good told me that so long as you keep the thyroid hormones in range then you can't do harm.

[JMN2017 in reply to waveylines]

Thanks waveylines

"Generally they don't like your thyroid hormones out of range. Your ft4 is high & with a suppressed TSH I'm surprised the labs haven't tested the Ft 3 because of this."

For some reason, the labs here won't test T3 levels. Crazy!!! I'll need to see a Endo consultant before they'd consider testing T3. Even if I got T3 tested, GP would totally disregard so, until I get to see private Endo specialis, there's little point, as it wouldn't change anything.

[waveylines in reply to JMN2017]

How silly of them.... So frustrating for you. In fairness mine went through a phase of not doing the the Ft3 even though I'm on NDT!! Last couple of years theyve done all 3! And that's a GP request.... I was meaning for your peace of mind to test privately to check the ft3. The fingerprick tests are pretty reasonable. Best to get TSH, ft4 & Ft3 so they've all been done at the same time. Then if your Ft3 is in range you can feel more confident in pushing your case.

This idea that we are all the same & fall strictky in range is all a bit extreme. It's all based on averages which knocks either end off the scale.

Make sure you line up a well checked out thyroid friendly endo....? Many are diabetes specialists and know no more than GPs re hypothyroidism. Lol...

[SlowDragon Administrator in reply to JMN2017]

For some reason, the labs here won't test T3 levels. Crazy!!! 

I get T3 prescribed on NHS …..and still they won’t test T3

just test privately at least annually……including vitamin levels

List of private testing options and money off codes

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

[Lalatoot]

JMN there is a link between high FT4 levels and the risk of developing cancer. There is discussion about that in this post:

healthunlocked.com/thyroidu...

[JMN2017 in reply to Lalatoot]

Many thanks Lalatoot

I'd not realised there was a link between high FT4 and cancer. I've had breast cancer, left and right, treated with lumpectomy etc and radiotherapy, 12 yrs and 2 yrs ago. I wonder .....??? However, no proof and can't change that now.

However, I don't like the thought of taking meds that could increase my risks so I certainly take all these posts very seriously.

Many thanks for bringing this to my attention

[waveylines in reply to Lalatoot]

That's interesting. I had bc 9years ago, very aggressive and had the full works. Still in remission. My oncologist was keen to maximise my level of thyroid hormones to enable me to fight the disease whilst in treatment. Not lower.

[JMN2017 in reply to waveylines]

Sorry to hear you've had breast cancer but good news that you're in remission. Long may it continue

[waveylines in reply to JMN2017]

Thank you. I'm very lucky. 😊

[waveylines]

I did find this on pub med. I think it's not really known...you might find it interesting. ncbi.nlm.nih.gov/pmc/articl...

[JMN2017 in reply to waveylines]

Hi waveylines

Many thanks. Yes, I did find it interesting. Thanks for the link

[lovelab]

I'm in similar position and would like to know studies that show atrial fibrillation with high FT4 for me and to also show doctor. I feel better on higher dose as each time they drop my dose I crumble.

[GlowCoach Administrator in reply to lovelab]

If you possibly can then it might be better to get some T3 added to yuor Levo and then you can keep your FT4 lower as you would need to drop some Levo.

email [e-mail] for a list of T3 friendly Endo's.

[JMN2017 in reply to GlowCoach]

GlowCoach

Thanks very much. Yes, I realise it would be worth seeing an appropriate (T3 friendly) private specialist.

I can appreciate my FT4 is too high but, when I've reduced dose previously, I begin to feel unwell again. However, having read about the link with cancer and AF/Cardiac problems, I really would like a solution to this and, it does sound as if a tad T3, with appropriate drop in Levothyroxine, could balance the 'number's better

So, this will be my plan and so will be scrutinising the recommended list.

Thanks J

[lovelab in reply to GlowCoach]

thank you for replying. I'm in France and am 'negotiating' with new GP. He said he didnt know you could add T3 in cases like mine. Not sure if Ill be able to convince him but trying. Unfortunately when you look at recommendations for Cytomel (Cynomel Vidal.fr) on French websites it only says in emergency severe cases and as a temporary measure. This is not helping me get what I want/need. Very frustrating. Doctors are scarce atm in my region. If and when I manage, I'll let you know the good news.

[GlowCoach Administrator in reply to lovelab]

Do start a new post about being prescribed T3 in France. I know we have some members living in France.

[helvella in reply to lovelab]

The official documentation for Sanofi Cynomel says:

Duration of treatment

Since the majority of hypothyroidism is a definitive disease, treatment should be continued indefinitely.

base-donnees-publique.medic...

[lovelab in reply to helvella]

thank you Helvella. I'll send this to my GP.

[helvella in reply to lovelab]

I have a suspicion there could be some confusion with Vidal.fr merging information about tablets and injectable products.

Whenever someone takes information about two or more products and merges it, even if they are nearly identical, they somehow manage to make mistakes. Time and again. Country after country.