Help feeling confused - do I have a problem with my thyroid and is my medication working?

[Lavender503]

Hi, I wondered if anyone might be able to help. I am relatively new to all of this. I have been diagnosed with Hashitmotos. I apologise for the long post but I thought it might be helpful to give as much detail as possible.

I started having symptoms a year ago, it mainly started as gut problems and then I became very fatigued. I got referred to an endocrinologist, who said I don't need any medication and that my thyroid is fine and that I just need to monitor my thyroid levels and antibodies. I then sort a second opinion and another endocrinologist said that I needed to medicate as I am hypo. They tried T3 first as they said it was only my T3 that was low and that had no effect apart from making me feel very unwell. I then had a break from medication to measure levels again and then they put me on 1 grain NDT. With the knowledge I have now I can see that I should have been put on levo to start with but sadly what's done is done.

Since starting the NDT, the first couple of weeks were great, my energy levels were much improved and I did feel better albeit not sleeping very well. However, since then I have started to not feel so great and I have really bad insomnia which is becoming quite wearing. And none of this has made the gut problems any better.

I have been monitoring my levels and have just done my blood tests after being on NDT for 8 weeks and my levels haven't really improved apart from my TSH coming right down.

I am at the point where I am feeling very confused.. is the NDT working? I have a feeling it is not! From here should I be trying Levo? I am confused as to whether I have a thyroid problem and whether I need to be on medication as don't want to try levo if it is not necessary. I know no one can give me medical advise but I feel there is a lot more knowledge on here than some of the consultants and GPs out there.

I have tested all my vitamins several times and everything is very good inc. iron, folate and B12. I have also done the cortisol saliva test and my levels are okay. I am gluten and diary free, have never really eaten any processed foods or sugar. I had glandular fever in 2022 and my EBV post infection markers are still high and I wonder if this might be throwing my TSH off?

I have included all the results I have below - any information or guidance would be much appreciated.

First blood test - 8th March 2024 (taken in the afternoon, these are the results the endocrinologists used to diagnose):

TSH: 1.90 mlU/L (ref range 0.27 - 4.2)

Free T3: 3.64 pmol/L (ref range 3.66 - 6.72)

Free T4: 12.6 pmol/L (ref range 12.4 - 20.4)

Thyroid peroxidase antibodies: 317 IU/mL (ref range 0 - 34)

11th June 2024 (had been on 45mcg of T3 for 8 weeks, test taken before 9am and before medication)

TSH: 3.53 (ref range 0.27 - 4.2 mlU/L)

Free T3: 3.8 (ref range 3.1 - 6.8 pmol/L)

Free T4: 16.1 (ref range 12 - 22 pmol/L)

TPO: 281 (ref range 0 - 43 IU/mL)

4th August 2024 (no medication for 8 weeks, test taken before 9am)

TSH: 5.610 (ref range 0.27 - 4.2 mlU/L)

Free T3: 4.1 (ref range 3.1 - 6.8 pmol/L)

Free T4: 14.3 (ref range 12 - 22 pmol/L)

TPO: 240 (ref range 0 - 43 IU/mL)

5th November 2024 (1 grain NDT for 8 weeks, test taken before 9am and medication, no iodine for 1 week)

TSH: 0.776 (ref range 0.27 - 4.2 mlU/L)

Free T3: 3.9 (ref range 3.1 - 6.8 pmol/L)

Free T4: 11.9 (ref range 12 - 22 pmol/L)

TPO: 212 (ref range 0 - 43 IU/mL)

[SlowDragon Administrator]

Have you had vitamin D, folate, ferritin and B12 tested

Or coeliac blood test done

What vitamin supplements are you taking

Yes suggest you consider restarting on 50mcg or 75mcg Levo

NDT will very rapidly reduce TSH

11th June 2024 (had been on 45mcg of T3 for 8 weeks, test taken before 9am and before medication)

That was very high dose T3 after relatively short time

[Lavender503 in reply to SlowDragon]

Hi,

Thank you for replying.

Yes have had all my vitamins tested and they are all very good - above optimal.

I am on Vitamin D, Zine, Selenium, B complex (no biotin), Magnesium, probiotics, liposmal vitamin C.

Been tested for coeliac and all clear.

Yes I know the T3 was high, I can't change that now.

Okay, so you think the results indicate that I should be on thyroid medication? Felt so confused after all the different results and medications. Will speak to the doctor.

[BB001 in reply to SlowDragon]

Thank you for the comprehensive post with medical history, results and dosage at the time, it helps a lot.

[Hectorsmum2]

45 mcg of T3 was a lot to start you on.its not surprising you didnt feel well. It looks to me however that now you need a increase of your NDT. Your T3 needs to be top of the range. People often feel better for a little while after starting or increasing. Once your dose is optimal you shoudl feel better all the time. Taking iodine is not recommended for us with thyroid issues these days. I would ask you doctor if you can increase by a quater of a grain.

[Lavender503 in reply to Hectorsmum2]

If I increased the NDT, would that not surpress my TSH even more? It's already dropped quite low as it is?

Yes I did read that about Iodine but I did another post asking about that and the dose I am taking people though was okay. I had a urine test done and I am low.

[Hectorsmum2]

NDT will suppress your TSH. the tSH becomes a bit irrellevent once on anykind of T3 containing preparation. You need to be guided by T3 result.

[Lavender503 in reply to Hectorsmum2]

Okay I see. I read that even while in NDT if your TSH drops below the reference ranges it can risk you getting osteporosis amongst other things? Is that not the case?

[BB001 in reply to Lavender503]

It's not TSH that is linked to osteoporosis, it is very high thyroid hormones fT3 and fT4. Researchers were using TSH as a proxy for testing thyroid hormones in Graves disease (hypERthyroid) Patients. The T3 in NDT suppresses TSH without the thyroid hormones being high, so don't worry about osteoporosis.

[Hectorsmum2]

I think there was a study done on people who had had thyroid cancer and needed to have a suppressed tSH long term and there were no ill effects. A lot of the studies re supressed tSH have been done on people with graves rather then hypo people on hormone replacement. Hopefully more scientific people will answer as well. I have not heard of the study re NDT. It might be a matter of deciding if for your the benefits outweight the risks.

[Lavender503 in reply to Hectorsmum2]

Okay thank you very much!

[DippyDame]

That is very erratic dosing! Those medics were clueless and frankly irresponsible

No wonder you are confused....your poor body certainly has been

It needs a lot of unpicking to get you on track....I'll try to be concise.

45mcg was not a wise way to start medicating you....that was like putting high octane racing fuel in an old Mini !! Problems!

Looking at your diagnostic test below ( when ideally bloods should have been drawn at 9am on an empty stomach)

You were/ are obviously hypothyroid and have Thyroid Autoimmune disease/ Hashimotos, a common cause of hypothyroidism. A gluten free diet helps many.

Your starting dose should have been 50mcg levothyroxine daily to be retested after 6/8 weeks

After that test, your dose would need to be increased by 25mcg to 75mcg

Repeat the increase/wait/ test protocol until your symptoms resolve and you feel better

You will hit bumps along the way as the body adjusts to the increases as you work towards your therapeutic dose, this is normal and not a reason to think T4 isn't working...you need to stick it out!.

When the dose is right the symptoms will resolve

There is no quick fix....it takes a lot of slow and steady ime

Both Frees should be approaching 75% through the reference range

First blood test - 8th March 2024 (taken in the afternoon, these are the results the endocrinologists used to diagnose):

TSH: 1.90 mlU/L (ref range 0.27 - 4.2)

Free T3: 3.64 pmol/L (ref range 3.66 - 6.72)

Your FT3 is - 0.65% through the ref range

Free T4: 12.6 pmol/L (ref range 12.4 - 20.4)

Your FT4 is 2.50% through the ref range

Thyroid peroxidase antibodies: 317 IU/mL (ref range 0 - 34)

Your T4 to T3 conversion looks fine at this stage, but you need to check that once your hormone levels have settled ..... so no need for T3 at the moment.

High FT4 with low FT3 indicated poor conversion

You just need an appropriate dose of Levo starting as detailed above....absolutely not 45mcg T3!!

Since NDT has fixed hormone content it is not always easy to achieve the T4/T3 balance you need.

No iodine!!

We aim to raise hormone levels low and slow to allow the body to adjust!

TSH is not a reliable marker, yet it's the quick, cheap test they use for monitoring doses....it was originally developed to test for low FT4 levels indicating hypothyroidism....then they tweaked it and lost it's reliability.

FT3, the active thyroid hormone is the most important reading followed by FT4

So....you've worked it out correctly despite those clowns playing with medical degrees!!

You need to go on a starter dose of Levo/T4 and slowly increase it.....

Your doctors have turned a straight forward issue into a complicated mess

There's a lot involved so hope it's clear enough

We're all here to help....just ask!

Good luck!

thyroiduk.org/if-you-are-hy...

thyroidpatients.ca/2021/07/...

thyroid.dopiaza.org/?utm_so...

[Lavender503 in reply to DippyDame]

Thank you so much, that all makes sense. I have got myself in a right muddle not really knowing what is going on to the point I was questioning whether I am hypothyroid!

I have an appointment next week so will get swapped onto Levothyroxine.

[Lavender503 in reply to DippyDame]

Sorry DippyDame another question.. do I need to stop the NDT and have a break before going on to Levothyroxine? Or can I go straight from one to the other?

[SlowDragon Administrator in reply to Lavender503]

do I need to stop the NDT and have a break before going on to Levothyroxine? Or can I go straight from one to the other?

You can probably go straight from one to the other

avoid Teva brand Levothyroxine

Suggest you start on Vencamil brand levothyroxine 50mcg or possibly 75mcg

[Lavender503 in reply to SlowDragon]

Thank you SlowDragon

Are there any other brands to avoid or just that one.

[DippyDame in reply to Lavender503]

I would do a straight swop.

[greygoose]

With the knowledge I have now I can see that I should have been put on levo to start with but sadly what's done is done.

It's not any sort of a problem that you didn't start on levo. It just highlights the lack of knowledge of your doctors. It may have been your FT3 that was low, and your FT4 ok, but when you start taking T3, the TSH drops and the thyroid stops making ALL thyroid hormone, T4 included. That they didn't know that is rather worrying.

Since starting the NDT, the first couple of weeks were great, my energy levels were much improved and I did feel better albeit not sleeping very well. However, since then I have started to not feel so great

Perfectly normal. It just means that you're ready for an increase in dose.

I have been monitoring my levels and have just done my blood tests after being on NDT for 8 weeks and my levels haven't really improved apart from my TSH coming right down.

I am at the point where I am feeling very confused.. is the NDT working?

Your TSH will come down because of the T3. And the fact that your TSH has come down shows that the NDT is working. In fact, it's a hormone, it can't not work. It's not a drug, like aspirin, which may or may not get rid of your headache. Hormones will work as well as the body will allow them.

I grain is a very small dose, so you can't expect your Free levels to shoot up. They have improved and the improvement appears to be consistant with the size of the dose. And if you've been taking that dose for 8 weeks, it's time for an increase.

I really don't think it would be a good idea to switch to levo at this point. Now you're on T3, stay on it. You don't want to confuse your body any further. You probably wouldn't gain anything from the switch but would lose time.

And looking at your levels on your first blood test before diagnosis, you most certainly do have a thyroid problem. For a start you have Hashi's - which means things are going to get worse - and your Free levels were right at the bottom of the range. Far too low for good health.

I wouldn't imagine the EBV virus has anything to do with your TSH, looks more like you have a sluggish pituitary. But it is more than likely responsible for triggering the Hashi's. It's a well-known trigger.

And, as you have Hashi's, your levels are prone to fluctuation. So, not always a good guide. But I think it's pretty obvious that the problem is your dose is now too low, and you just need an increase in dose.

[Lavender503 in reply to greygoose]

Thank you for explaining. I still don’t quite understand this.. it’s probably my lack of knowledge

They have improved and the improvement appears to be consistant with the size of the dose. And if you've been taking that dose for 8 weeks, it's time for an increase.

My TSH has come down significantly but my T3 and T4 has also dropped slightly since taking the NDT from the previous results, I thought it was supposed to go up? So when you say there has been an improvement is that just the TSH? Or do you look at it from the very beginning ie my very first blood test?

[greygoose in reply to Lavender503]

They are but as you have Hashi's, your levels are likely to fluctuate. But that doesn't mean the NDT is not working. Try increasing your dose and see what happens.

[Lavender503 in reply to greygoose]

Right I see. Thank you for explaining. Will stick with it and increase and see what happens. How much do you usually increase NDT by just so I’m aware before my appointment?

[greygoose in reply to Lavender503]

Maximum 1/4 grain every two weeks. But a lot of people go far more slowly than that.

[Lavender503 in reply to greygoose]

Can you use two 1/4 grain tablets to make 1/2 grain? Just thinking about trying to reduce the number of different prescriptions I am ordering in one go?

[waveylines in reply to Lavender503]

I'm on ndt. 1/4- 1/2 grain increases are the usual. You don't say which ndt you are on. IS it Armour or Erfa? They have slightly different ratios of T4/T3.

If on Armour, one grain would be 38mcg of T4 and 9mcg of t4. In Levothyroxine term equivalent to around 65mcg but its a rough guide. So a slight increase. . ( Armour 1/2 grain = 19mcg of T4 & 4.5 mcg of T3; Armour 1/4 grain = 9.5mcg of T4 & 2.25mcg of T3) I would not increase every two weeks personally. Its usually 6-8 weeks test and review what ever thyroid hormone treatment you are on. This is because it takes the body time to adjust and get the full benefit of the hormone change and for your metabolism to change. . If you increase more frequently it's possible you will sail past your "sweet spot". This is your optimal dose. However your natural output from your thyroid may fluctuate currently due to the Hashis....this is common and normal but it means you may end up having to adjust your dose of ndt up and down whilst this happens.

On T3 product whether liothyronine or ndt your TSH eill be suppressed. TSH is not a thyroid hormone. It's a signal mechanism from the pituitary telling your thyroid to increase or reduce production.

There is no body of research that proves taking ndt or liothyronine results in osteoporosis. It's a nonsense! If your ft4 and ft3 are kept within range you will be fine. Wise words from two very experienced endos I've seen.

I'm not sure your Endo is ignorant but I am surprised at how quickly they lept to T3 products. Did the Endo say why?

The usual protocol would've been to follow through with levothyrosine slowly increasing to see if your T3 came up. 50mcg is a low dose but a starter dose. And given how far your Ft levels had fallen it's not surprising it was not enough. You would like need several increases before you felt well.

Whatever form of thyroid hormone replacement you are on it will take time to find the best dose for you and for your netabolism to stabslise.. it's trial and error as we all respond a bit differently.

GF can in some people help to lower thyroid antibodies but not all. Some people benefit from dairy free.

Upset tummy or digestive system is common in under treated hypothyroidism and should settle once your thyroid hormone levels are more optimal.

Have you read Living with your Thyroid by Barry Durrant Peatfield? A good book to gen up on. You can pick up second hand copies quite easily.

[Lavender503 in reply to waveylines]

Thank you for your reply, that is really useful information. I am on Armour.

They seemed to think that my T3 was an issue to start with but obviously it wasn't.

They started me in NDT rather than levo because they have seen better results with NDT over Levo.

Thank you

[waveylines in reply to Lavender503]

Wow.....am impressed with your Endo. An enlightened soul. My goodness very rare in the world of Endocrinology!! Give it time. What is good is that you have the co-factors all in place and optimal....well done you.

Armour is a good product.

The book I mentioned will give you knowledge on how it all works, signs symptoms etc.... I personally did not recover as quickly as described but then I went on the scenic route... 🤣 of

Levothyroxine, then levo liothyronine, then ndt. So it all took much much longer!!

Keep posting!!

[Lavender503 in reply to waveylines]

waveylines Can you use two 1/4 grain tablets to make a 1/2 grain dose? Just in terms of saving myself buying lots of different presciptions to start with?

[waveylines in reply to Lavender503]

Yes you can take two quarters to make a half. ....its just more expensive that way

[FancyPants54 in reply to waveylines]

Scenic route. 🤣

I’ve done that too.

[waveylines in reply to FancyPants54]

I think most of us have......🙄😂🤣 quite jealous of the short cut tbh!!

[FancyPants54 in reply to waveylines]

Yes, she has been given a leg up.

Are you back up to your original dose yet after the Amiodarone debacle?

[waveylines in reply to FancyPants54]

Sadly not lol. I've now made it back to 3grains. I was on 3 3/4 grains pre Amiodarone. The mix of hyper/hypo symptoms have gone....just hypo so easier to sort. So inching my way back up. It'll be spring before I'm sorted. 18months!! Lol....

[FancyPants54 in reply to waveylines]

Good grief! What a mess they made of that for you.

[ThyroidThora in reply to Lavender503]

Hi,

You are on NDT and feeling better so, stick with it and increase the dose. Please don’t juggle with lots of different types of thyroid medication. I was diagnosed with thyroid cancer and it was removed but I needed replacement thyroid hormones. The specialists put me on a roller coaster ride of try this and then try that. I had the synthetics until I was trialed on Armour thyroid and I started to feel like me old self again. Then I was put back on the synthetics because of cost to the NHS. I was back to square one until I bought a cheaper version on NDT and I started to feel a bit better. Then the manufacturer stopped making it and I was back on the synthetics via my GP prescription. I was on this yo-yo ride for nearly 8 years until I said enough is enough. I was suicidal! The reply from the oncologist and endocrinologist was “it’s not about a quality of life it’s about keeping you alive”. So, I said I didn’t want to continue living like a zombie and told them of my plans to die. Luckily, they listened this time and managed to get the Armour funded via the cancer drugs fund, after all, it was needed to stop the cancer coming back. I’ve been on the Armour for 3 years now and I’m not 100% but this is due to the horrific journey I’ve been on and the complications associated. I’m now a diabetic and am going blind due to the diabetic complications… all linked to this horrible thyroid journey. I lost my job, my career, my health everything. Please stick with Armour for a while longer and gradually increase your dose before changing to anything else.

Good luck and take care.

TTxx.

[Lavender503 in reply to ThyroidThora]

I am sorry to hear you have had such a horrible journey. Thank you for your advise makes complete sense not to keep changing!

[FancyPants54 in reply to Lavender503]

It looks like Levothyroxine would have worked for you. But I’m not sure many of us actually thrive on it. So provided you can afford it, keep with the NDT for now. 1/4 grain increase.

[Poniesrfun]

I had a thyroidectomy for thyroid cancer and have been taking NDT for eight years. My TSH has been undetectable but FT4 and FT3 staying in range. I get NP-Thyroid; insurance coverage is usually much better than for Armour. My usual dose is 1 grain (60 mg) three times a day.

When taking thyroid hormone you should skip taking extra iodine as you’ll get enough in your food. Try to stay consistent with your labs - same lab, same time of day, before taking meds, no biotin at least 3 days (look out for energy bars or drinks)

Patti in AZ