OVER MEDICATED? PLEASE HELP 🙏🏼

[Mitch14]

Hi All,

I’ve finally got into the system to see an NHS Endo to try and get then to prescribe me T3. (I’ve been self medicating with it for about 4 years)

I had the DIO2 test which was showed that I do have the faulty gene from both parents and don’t covert .

Currently taking 150mcg Thyroxine in the AM and 25mg Liothyronine. 12.5 in the morning and 12.5 in the evening.

I also take iron with vitamin C

Vitamin D

B12 complex

Selenium

I did private bloods to see what my levels currently are and I attach them in the photo below. I wonder if you could guide me what steps I need to take to make them perfect.

Then I will repeat them again before doing the hospital ones as I want to make sure everything is spot on before seeing the Endocrinologist.

My TSH is 0.005 (usually it’s 0.001) but I feel well like this. Is it a problem?

Also I have low transferrin so have upped my iron.

My resting Heart rate sits at around 54 BPM on average, but often dips to 47 regularly and does go as low as 44. So if this is the case, how can I be over medicated with such a low pulse rate? Surely it would be racing?!

I’m so grateful to you all as always for your time and help . THANK YOU x

[greygoose]

Who said you were over-medicated? Your FT3 is top of the range, but not over, so on the basis of that, I wouldn't say you were over-medicated.

There's no such thing as perfect labs for thyroid. Blood tests are only a rough guide to how well you're progressing. How you feel is far more important. And if you feel your best with these labs then they are perfect FOR YOU. Thing is, we're all different. Personally, I need my FT3 slightly over-range to feel my best. Others migh feel over-medicated with high FT3, and feel best with it around mid-range.

As to your TSH, on 25 mcg T3 it's going to be suppressed, and that's all there is to it. That's what T3 does. And, any endo that argues with that is not worth listening to. You have to do what's best for you.

[Mitch14 in reply to greygoose]

Thank you so much as always Greygoose. It was the Medichecks report that said I was being over medicated. I’ve attached a photo for you to see.

I do feel SO much better on my meds the way they are. I’ve been on this dose for a good few years now, although I do so sometimes wonder if maybe an increase in T3 would make me feel even better.

Thank you so much for your reply 🙏🏼

Medichecks report

[greygoose in reply to Mitch14]

Ah ok. Well, frankly, these reports written by Medicheck doctors are not worth the bandwidth they're written on. They are not thyroid specialists. They are just singing from the NHS hymn sheet that worships TSH. You cannot tell if someone is over-medicated just by looking at the TSH, but they think you can. Just ignore what they say about osteoporosis, it has nothing to do with anything.

If you feel well on that dose, stay on it.

[Mitch14 in reply to greygoose]

Thank you so much. I’ll definitely be fighting my corner. 🙏🏼

[greygoose in reply to Mitch14]

You're welcome.

[SlowDragon Administrator]

Will tag humanbean to comment on iron results

What was ferritin result

[Mitch14 in reply to SlowDragon]

Thank you so much SlowDragon 🙏🏼

[SlowDragon Administrator in reply to Mitch14]

Please add ferritin result if you have it

humanbean or SeasideSusie can hopefully comment

[Mitch14 in reply to SlowDragon]

Thank you so much SD. I only have these iron related test resists. 😘

Iron Blood Results

[SlowDragon Administrator in reply to Mitch14]

SeasideSusie may pop along and comment on low transferrin

You need to test ferritin

[radd in reply to SlowDragon]

SD,

Results show O/P’s ‘transferrin’ as high!

[SlowDragon Administrator in reply to radd]

Transferrin 15.92 (20-90)

Obviously needs further testing, especially ferritin test

labs.selfdecode.com/blog/tr...The most common cause of low transferrin levels is iron overload (excess iron) [26, 10].

Iron overload can be due to iron poisoning (acute), or due to chronic overload due to hereditary disorders such as hemochromatosis, thalassemia, or sickle cell anemia [27

urmc.rochester.edu/encyclop...

If you have a lower level, you may have another problem, such as liver disease and hemolytic anemia.

[radd in reply to SlowDragon]

SD,

Transferrin 15.92 (20-90)

Your are referring to something else called transferrin saturation % which is a calculation of how saturated the body is with iron. It is calculated by dividing serum iron by TIBC and multiplying by 100.

Example -

Serum iron is 11.51

TIBC is 72.31

(11.51 / 72.31) x 100 = 15.92 (T/S%) which is low because the OP has low serum iron (but not transferrin).

You said the O/P has 'low' transferrin. This is the actual protein the iron travels about on and whether we look at bound transferrin (TIBC) at 72.31 (45-81) or unbound transferrin (UIBC) at 60.8 (24.2 - 70.1) we can see that both of these show the O/P's transferrin is actually 'high'.

[Mitch14 in reply to SlowDragon]

Thank you for the links. They were really helpful. I’m stopping my iron supplements for now and will investigate further. Thank you so much

[radd]

AuntieMandy,

I assume you are worried about the low TSH which endo will pick up on.

Your TFT’s aren’t directly indicting over medication, although some might feel it with both a high FT4 & FT3. The only way to try raising TSH is to reduce meds which if you feel well could/would be disastrous, and there is no guarantee TSH will raise enough to satisfy endo or even raise at all.

This is bane of many members under an endo's care and why a significant proportion of us self medicate.

Iron panel shows iron deficiency.

[Mitch14 in reply to radd]

Hi Radd, Thanks so much for your reply. I’m so grateful.

I am worried that they will tell me my TSH is too low.

About 5 years ago a private Endo reduced my meds (from what they are now) and I was a MESS! It took me ages to get back to feeling a bit human.

I refuse to change my meds without one of you guys saying so as I trust you all here more than them!!!

Which iron supplement would you recommend for low transferrin?

Thanks so so much. 🙏🏼

[radd in reply to Mitch14]

AuntieMandy,

Your transferrin isn't low, its a high. This is the protein the iron travels about the body on. The transferrin saturation % is a calculation of how saturated your body is with iron and achieved by serum iron divided by TIBC, ie (11.51/72.31) x 100 = 15.92 (T/S%) which is low. These results and your actual serum iron all point towards low iron levels.

Re supplementing I don’t have experience because don’t need to supplement but I read other members have success with Ferrous Fumarate taken 500mg-1,000mg vitamin C which aids absorption and minimises constipation. I have no idea of the amounts involved but know supplementing too quickly or too high amounts can results in less absorption as the body’s protective mechanisms kick in to prevent toxicity.

Others might disagree with me but I do think your meds are high, although you aren’t showing or sounding as over-medicated. I think if you managed to raise iron then you might be able to reduce meds a little whilst gaining the same benefits. And I wouldn’t suggest reducing meds until you have raised iron quite significantly, which may improve usage of other nutrients too.

[Mitch14 in reply to radd]

This is brilliant. Thank you so so much for taking the time to reply. I will def look into sorting out my iron.

I’ve been supplementing my iron since these results came back, but I will look into ferrous Fumarate specifically as I think what I’m taking is rubbish.

Thank you 🙏🏼

[shaws]

The following link may be helpful and you've been diagnosed due to your very low TSH. The majority of doctors/endos believe this:-

ncbi.nlm.nih.gov/books/NBK2...

25mcg levothyroxine and 25mcg liothyronine are not the same in their 'actions.

25mcg levothyroxine is 25 but 25mcg of liothyronine is equal in it's "action"to 100mcg of levothyroxine.

Liothyronine (also called T3) is the'active thyroid hormone' needed in the millions of T3 receptor cells in our bodies.

Levothyroxine is an inactive hormone and also called T4 and converts to T3.

When you are due a blood test this is the method to give us the best result:-

Always get the earliest possible appointment - even if made weeks ahead. It is a fasting test (you can drink water) and allow a gap of 24 hours between your last dose and the test and take dose after blood draw.

Always get a print-out for your own records. If you have a query post them.

Ask GP to test B12, Vit D, iron, ferritin and folate - everything has to be optimal. The aim is to be symptom-free and we feel well.

[Mitch14 in reply to shaws]

Shaws thank you so so much for replying and the above. It was really really helpful. This part was particularly eye opening for me:

‘25mcg levothyroxine and 25mcg liothyronine are not the same in their 'actions.

25mcg levothyroxine is 25 but 25mcg of liothyronine is equal in it's "action"to 100mcg of levothyroxine.’

Thank you for all of you help and knowledge. So grateful for all you do for all of us 🙏🏼

[shaws in reply to Mitch14]

I was so glad I found Thyroiduk long before this forum began.

I think it is amazing that many of our younger doctors seem to have less knowledge than our 'older doctors (now long retired) who knew how to diagnose/treat us by symptoms alone.

The last two of the 'trained doctors' before the introduction of blood tests for dysfunctional thyroid glands were Dr Gordon Skinner (deceased). Since his demise his staff collated all of their scientific evidence and stated that it would 'shake up' the medical when they were able to publish findings.

I was fortunate to consult with Dr S and also Dr Barry Peatfield both pursued/hounded by the GMC for doing as they were trained. Dr Barry finally resigned his Licence so that he could still diagnose and advice patients how to recover somewhat their health

Both doctors are now deceased but Dr Skinner's staff hope at some time to publish all of their scientific evidence of how people should/could be helped to restore their health /

Dr Skinner saved this woman's life and am sure there are others too as people travelled from all over the UK to consult.

dailyrecord.co.uk/news/real...

thyroiduk.org/product/your-...

[Mitch14 in reply to shaws]

There are some wonderful endos out there but sadly they are so few and far between. I relate to Lorraine’s story so much. So many similarities. How sad we have to FIGHT the system just to live a normal life like everyone else. We are SO lucky to have all of you here that take time every single day and answer every single question.

THANK YOU ❤️

[shaws in reply to Mitch14]

If we've had poor treatment and doctors who tell us that we're fine when we feel so unwell no wonder when we - finally - get a diagnosis we feel relieved that we can put a collective 'name' to how we feel.

Some of us are fortunate that levo resolves their symptoms.

It is us on this forum who have difficulties when levo doesn't improve us in any way.

We used to be prescribed NDT - the original thyroid replacement- since 1892 and from then on lives were saved.

Nowadays - blood tests seem to have overtook knowledge of clinical symptoms and the assumption is that levothyroxine resolves all symptoms.

It may do for many, many people but there is a section of society who cannot and do not improve on anything but T4/T3, T3 alone, or NDTs (natural dessicated thyroid hormones) now withdrawn despite its safety shown from 1892 onwards.

Many of our 'super and wonderful endocrinologists' also suffer if they don't toe the line laid down by the seniors.

[Mitch14 in reply to shaws]

Hopefully in time this will all change.The people losing years of their lives stuck in a bed with crippling chronic fatigue and those having to self medicate will become a thing of the past, when someone comes along and re frames it all and the mainstream ‘Idiots’ finally listen to what we have a been telling them for years!

Until then we battle on and we remain grateful to you, SlowDragon, Greygoose, Helvella, SeasideSusie and the countless others that help us all here every single day and make us realise that the problem isn’t us .. it’s them!! 🙏🏼🙏🏼🙏🏼

[shaws]

If you want to draw a member's attention to your post put an @ sign before their 'name' i.e. SlowDragon greygoose helvella SeasideSusie and you will see suggestions appear, click on the name you want which will turn blue and they will be notified automatically.