Have I come to the end of the road with Levo, feel awful no improvement despite increase.

[Peanut31]

Just a bit of back ground info, in case not familiar with my posts.

Diagnosed with Hashimoto's by private endocrinology, after 18 months plus of wondering why I felt so tired, hairloss, neck and muscle stiffness, depressed, anxiety, freezing cold all the time, weight unstable, dry skin, brittle nails, tight throat, loss of hearing, blocked ears.

Anyway, to cut a long story short and after several visits to my private endo diagnosed with Hashimoto's, told no medication would help and basically that was that. I'm gluten free since September 2017.

Got worse went to GP thyroid bloods ordered.

TSH 12.2 (0.27-4.5)

T3 4.12 (3.1-6.8)

T4 10.2 (11.0-23.0)

started on 50 mcg of levo

2nd blood on Levo

TSH 4.1 (0.27-4.5)

T3 4.51 (3.1-6.8)

T4 14.2 (11.0-23.0)

3rd blood on Levo 75mcg

TSH 1.6 (0.27-4.5)

T3 4.58 (3.1-6.8)

T4 17.4 (11.0-23.0)

4th bloods on 100 mcg levo

TSH 0.24 (0.27-4.5)

T3 4.71 (3.1-6.8)

T4 17.7 (11.0-23.0)

based on the 4th blood results my GP was going to keep me at 100 mcg of levo. However, as I felt awful, I asked for advice on here and was told that perhaps a further 25mcg would help so I went armed with information (Dr Toft) for an increase to which he agreed.

I have been on 125mcg of levo 12th July 2018, I am at my wits end, a lot of my symptoms have gone, but, I am left with the very prominent ones, neck tightness, throat tightness, headaches, hairloss, tired in the morning and later in the day. Moody and everything is an effect.

I introduced T3 and started taking 1/4 with my 125mcg of levo (started this 12th july) I started to feel less tired in the morning, and warm, but, that's the only benefit, still neck tight, major head aches, hairloss.

I then introduced 1/2 tablet of T3 with 125 mcg of levo 26th July, and I feel awful, my neck tightness is driving me mad, I have blocked ears and my throat feels tight. My voice feels and sounds like I have a sore throat and I noticed this started since having Levo. I have to constantly clear my throat, and I have major tension headaches.

I've been on holiday (uk) and I felt dreadful, spent a day in bed with a major migraine, I've not had one for ages, I had no energy on holiday at all.

Back to my meds

Then I wondered if I should of reduced my Levo, so I reduced it to 100mcg and still taking 1/2 of T3, this was on Monday.

I am due a blood test on 20th August with my GP, he is not aware I have started T3, as the conversation I had with him earlier was that everyone converts well on T4, and he shut it right down.

I have just ordered the Gene D102 test.

I am prepared after my 20th August test to just tell the GP I feel well, take the prescription and start self medicating.

My vitamin levels are all good as I did them privately and posted them on here before.

Any advice greatly appreciated, have I taken T3 wrong?

I feel like stopping T4 altogether and starting NDT or something I am desperate😢

Best Wishes

Peanut 31

[greygoose]

12.5 mcg is still a small dose of T3. Maybe you need another increase.

Perhaps it is the T4 that doesn't agree with you - it does happen. You could try reducing the T4 as you increase the T3 until you get to T3 only, see how you feel.

[Peanut31 in reply to greygoose]

Thanks greygoose

Should I try 75mcg of Levothyroxine and 25mcg of T3?.

Or stick to 100mcg of Levothyroxine and add 25mcg of T3.

Best Wishes

Peanut31

[greygoose in reply to Peanut31]

Depends what you want to do. Do you want to go T3 only?

[Peanut31 in reply to greygoose]

Hi greygoose

I’ll give anything a go to feel better.

I’ve been discussing it with my husband.

We both feel I’ve given Levothyroxine a good go, I’ve stuck to increasing it every 6 weeks with blood tests.

Testing the same time every 6 weeks.

My GP wasn’t even going to increase my dosage as said my results on 100mcg of Levothyroxine were fine.

I explained I was by no means fine as my health is not improving, I’ve hit a brick wall.

I suspect I will struggle to obtain a further increase of 150mcg of Levothyroxine next time.

My anxiety, coldness has gone, those are the only two symptoms that have gone.

I’ve been feeling dreadful and can’t see how I can improve on Levothyroxine alone.

I’m going to reduce my Levothyroxine to 75mcg and take 25mcg of T3.

I don’t know if that’s the right thing to do, but I dread waking up in the morning with my symptoms.

Best wishes

Peanut31

[Nanaedake]

You mentioned Epstein Barr virus in a previous post. Do you think there is anything else going on? Have you got any symptoms of infection? Have you excluded lyme disease for example? I think it can be tricky with thyroid disease as symptoms can be attributed to hormone imbalance and sometimes other factors don't get investigated thoroughly as a result. It might be worth discussing what other blood tests you could sensibly have to exclude obvious and more obscure possibilities.

[Peanut31 in reply to Nanaedake]

Hi

Yes my Endocrinologist said I had Epstein Barr virus.

I was given anti virus tablets for 2 months with no effect.

I’m working with a nutritionist who take stool samples and antibiotics were prescribed, this was at Christmas as I was having issues with my tummy (leaky gut)

My muscle pain has not disappeared, it only been highlighted more since other thyroid symptoms have disappeared.

I’m convinced I have fibromyalgia which is a symptom of thyroid issues.

Not tested for Lyme disease.

Nutritionist very thorough.

Best wishes

Peanut31

[Nanaedake in reply to Peanut31]

If you live in a rural area and walk in woods or out in the countryside, it's worth considering lyme testing but I don't know how you get tested for it. Apparently it is more prevalent in some areas than others.

caudwelllyme.com/

[helvella in reply to Nanaedake]

There was a section in Countryfile on BBC the other day about Lyme disease. All in all, not badly done.

bbc.co.uk/programmes/b0bdllcr

Even talk of millions of pounds potentially being donated...

[Aurealis]

I think you’ve made lots of changes close together which may contribute to feeling unwell. You have a mixture of symptoms some hypo some hyper but that may be due to imbalance following lots of changes. I think you need a period of stability and let your system settle down. Stick with GP you need tests and you need GPs expertise in other areas in case there’s something else going on. Neck tightness in not a thyroid symptom I recognise, perhaps get that investigated. T3 is very tricky and not worth trying till you absolutely have to. But GP should be able to see that you introducing T3 at all is another indication of how desperate you feel. Best luck xx

[Peanut31 in reply to Aurealis]

Hi Aurealis,

The problem is I have been increasing 25mcg of Levothyroxine every 6 weeks with bloods seeing the GP and not improving now at all now. I followed procedure to the dot.

Bad days and symptoms are getting closer together now on a daily basis.

It only highlighted this, last week on holiday, relaxing, no stresses and no getting up for work. I was exhausted after taking a shower in the morning, didn’t want to partake in small talk as no energy and basically felt like a zombie.

My neck issue has been looked at and discussed with my GP.

I’ve had a scan, been to physio before I was diagnosed with Hashimoto’s, Endocrinologist blamed it on Epstein Barr virus, when I questioned this after taking 2 months of anti virus tablets, he had no answer.

I’ve been to a chiropractic, two in fact No answers.

I’ve been told by several professionals It’s all muscular pains, I have regular massages as well.

Best wishes

Peanut31

[Hidden in reply to Peanut31]

I have Hashimotos ("Subclinical", but thankfully the doctor eventually gave me Levothyroxine anyway) and am still getting stabilised. Recently changed from 25 mcg to 50. Symptoms come and go, but have included a stiff throat and neck and often scalp, as well as difficulty speaking clearly because of congestion in my throat, headaches, loss of concentration and occasional breathlessness.

The other day I had a strange sort of headache that felt like I was wearing a tight and heavy cap. Throat and neck also tight. Didn't have much energy, and the headache gradually became more like a migraine, though not nearly as severe as I had when younger.

Before getting thyroxine I used to often have swollen eyelids as well, but that seems to have gone, except when having a really "Down" episode.

Many and varied symptoms - there is a list on here somewhere, will try to find it for you. I don't understand your doctor not being willing to investigate further. Maybe you should try to see a more sympathetic GP who will pull out all the stops for you!

But I do know that changes in medication need to be very gradual. On changing to 50mcg of Levo last week I had two good days, a few not so good, one good, one or two not so good. Hoping that this means it's taking a while to get used to the new dose.

all the best x

[Peanut31 in reply to Hidden]

Hi Jnetti

That's just how I feel as you have described below

"The other day I had a strange sort of headache that felt like I was wearing a tight and heavy cap. Throat and neck also tight. Didn't have much energy, and the headache gradually became more like a migraine, though not nearly as severe as I had when younger."

My GP is the best out of the bunch. The other one told me it was all in my head until my results showed otherwise TSH of 12.2.

I can't change GP surgeries either, there are only two that will accept me, and one is in special measures

Best Wishes

Peanut31

[Hidden in reply to Peanut31]

Found list of symptoms for you. There are probably more!

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

[Wolfiesmom08 in reply to Aurealis]

Neck pain is a symptom of migraine. I have it too.

[AnnaSo in reply to Wolfiesmom08]

Me too.

[UCSFDAB]

At what point and dosage did you feel best during the past 18 months? It is so difficult to track things when you have such a complex set of symptoms and etiology. Do you write down your dose, symptoms and sense of well-being to track your journey?

Can you remember that better state and make gradual small changes to return to that state and dose. It sucks to say patience, but without tracking things it is difficult to remember when things were even a bit better...

In my experience Migraines are the most immediately disabling situation you described. Am I clear that they came on after you began T3?

Are you saying that you are increasing your exogenous T4 and T3 and you are actually feeling worse?

You sound like a strong woman dealing with a remarkably complex set of challenges. I pray you have all the love and support around you in this most challenging of circumstances that can lead to such a strong sense helplessness and isolation. It's a iron woman triathlon, not a sprint. blessings..

[Peanut31 in reply to UCSFDAB]

Hi

The only time I felt good was on 50 -75mcg of levo, and as the weeks passed my body needed the increase to 100mcg.

100 mcg and 125mcg not good at all from the start.

Headaches were before T3 was introduced.

Best Wishes

Peanut31

[UCSFDAB in reply to Peanut31]

Peanut31

I started to feel well on 50mcg and 75mcg of levo, then on week 4 I felt awful on 75mcg, so I know I needed the increase on the 6th week.

Looking back at my notes I see that a few weeks after 100mcg I felt very unwell again, it appears the more I increase the levo the worse I start to feel quicker.

How do you know you needed to increase your L4 and add T3, if you felt better at a lower dose.... it seems increasing your exogenous dose is leading to less wellness and more symptoms. Are you buying into spiraling up your dose due to others' advice or counsel...

I support trusting your own experience of well-being at 50 to 75 micrograms of LT4.

THE [POST BELOW WAS MADE BY ROXANALEAH WHEN SHE WAS DISAGREEING WITH ME BUT HER POINT SEEMS SPOT ON TO ME.

If we are properly regulated, we ought to feel it.

I do agree, 'wholeheartedly', with your assertion that hormones are powerful substances. As such, I find it almost incredible that the best medicine has to offer is these clunky doses of t4, in 25mcg increments.

If my proper replacement dose is 66mcg of t4, I'm under-medicated at 50mcg and over-medicated at 75mcg. That might not seem like a significant difference, but given time, and half-lives...Not to mention, I'm likely to bypass it altogether, experience symptoms of over-medication, misinterpret them, and increase my dose. This places me on an unfortunate roller coaster to hormone hell, from which I just cannot seem to disembark, no matter what changes I make.

Furthermore, Dr. Alan Christianson, who's writing I reference in this post (and whose writing no one responding to this post seems to have read) says that if a patient comes to him with an astronomical TSH and he prescribes a dose and they return for testing after a few weeks and their TSH has dropped to 2.5, he knows, without a doubt that they are over-replaced because of what he calls "drift". The effects will continue for upwards of three months.

When you combine all the variables, with one other possibility I've recently identified, it's no wonder people and their physicians struggle to optimize their treatment.

Finally, and, for me, this has been the most dramatic shift of all, I agree, emphatically, with your last comment.

I came to this board, ignorant and vulnerable, and whether or not it was intentional, the 'message' I continued to see was that dose increases were the thing. People wrote things like, "I've managed to get my dose up to _____."

"I convinced my GP to increase my dose."

"I'm worried that my doctor is going to lower my dose."

So, I returned, half-cocked, to my practitioner, suspicious and ready to fight for my rights to as much medication as I thought I needed.

My focus has shifted and because of that, not only am I feeling better than I have for 18+ months, I'm taking less hormone replacement (coincidence?). My new intention is simply: How little exogenous hormone do I need to assist my body with it's functions?

It might sound meaningless, but it feels like a miracle to me! And a relief.

Thank you for the well wishes. I wish you the same, and everyone who visits this site and who doesn't.

[Aurealis]

Ok Peanuts31 sorry I misunderstood, not lots of changes close together. I see you say above that lots of your symptoms have gone on 125mcg Levothyroxine, but you’re left with prominent symptoms. Have you tried 150mcg Levo? I know you think GP won’t agree another increase but if you don’t try that higher dose of Levothyroxine you’ll never know if that’s the answer. There is room within the test range for one or maybe even two more increases in Levo (one at a time). It’s much easier than T3.

I wonder if your thyroid function is decreasing at a faster rate than you are increasing dose, so you feel poorly despite increases, rather than Levo not working. Symptoms resolve at different rates to thyroid treatment. Also - What brand of Levothyroxine have you been taking? Is the neck tightness an enlarged thyroid? In my opinion you should exhaust all combinations of Levo before taking T3. T3 could cause sore throat and enlarged thyroid if it pushes thyroid levels too high. Best wishes x

[Peanut31 in reply to Aurealis]

Hi

I started to feel well on 50mcg and 75mcg of levo, then on week 4 I felt awful on 75mcg, so I know I needed the increase on the 6th week.

Looking back at my notes I see that a few weeks after 100mcg I felt very unwell again, it appears the more I increase the levo the worse I start to feel quicker.

I spent a few days in bed with no energy and terrible, I had awful neck pain and my neck locked and was experiencing headaches, this was before I introduced T3 and on 100mcg of levo. The headaches are tension headaches that are connected to my tight neck I am sure.

As said I decided to add 1/4 tablet of T3 on my 125mcg (12th July) but, this has not helped, increase to 1/2 T3 with 125mcg on 26th July.

It seems that each increase now the levo makes me feel worse.

I am on Northstar and wockhardt. When I started on Levo (50mcg) I was on Teva, and it was hell on earth, I was moody, and biting every ones head off.

I switched to Northstar and wockhardt on 75mcg and my moods were better.

I had a scan on my neck and this confirmed Hashimoto's.

There is no way the GP will increase my levo to 150mcg, he didn't like that my TSH was below one, until I told him I felt like a bag of old nails.

I think I have tried the NHS way with no success.

I am at a loss

Best wishes

Peanut31

[roxanaleah]

I really, really, want to be helpful. Unfortunately, what I would suggest would be universally rejected and might even cause an uproar.

So, instead, I will ask you a of couple questions:

1. Are you sweating or feeling warm, for no obvious reason, at any point during the day?

2. How many hours can/do you sleep, consecutively?

[Peanut31 in reply to roxanaleah]

Hi

To answer your questions

1: I am feeling warm as it is hot in the UK, but, I am not sweating unless I do heavy work etc.

2: I sleep like a baby, right through the night, maybe 7 hours a night. No broken sleep at all.

Best Wishes

Peanut31

[penny in reply to roxanaleah]

I’m now intrigued as to what you might say which would cause an uproar.

[roxanaleah in reply to penny]

My thinking, after 18+ months of tinkering with dosages, having no limitations on the types and amounts of hormone medications available to me, is that many of us are experiencing over-medication. Not the 'heart-racing, tremor-having, can't sleep, diarrhea' level, but, what's almost worse, a slight, yet equally real, saturation of more hormone than our body needs. I believe, just like Dr. Christianson describes in the ebook, (pages linked in my recent post), the body systems actively and protectively begin to excrete the excess hormone, leaving us with hypo symptoms, despite elevated doses.

The phenomenon of "raising the dose and feeling better, only to feel worse, shortly thereafter" is explained in those pages, also.

I say my suggestion might cause an uproar because there seems to be an unspoken consensus, on this site, that regardless of dosage, if one feels unwell, an increase must be considered. Heck, I've even seen it written, upon analysis of someone's test results, "There's room for an increase in your t3 or t4."

"Room for an increase?"

How did that become the orientation?

For myself, my new focus, my new mantra has become, "How little hormone replacement does my body require to fully function?"

I believe that, had I adopted that intention, at the onset of diagnosis, I would have avoided unnecessary extremes and arrived at a reasonable dosage much sooner. As it is, I am grateful to have it now.

It has also been my experience that I have greatly misinterpreted my symptoms, assigning them to the wrong cause, repeatedly.

That has been eye-opening in this process. It has helped me fine tune my symptom-o-meter for the purpose of adjusting dosage.

I feel like I've broken out of the bondage of false perceptions and I'm hopeful for the first time in a long time; not only for my own health outcome, but because I would really like to be of help to others. No one understands this struggle like those of us who have lived it...

[humanbean]

What happens if you don't take your thyroid meds for a couple of days?

I'd been feeling awful for quite a while but I felt so much better when I stopped my thyroid meds. I felt amazingly good for 2 or 3 days, then began feeling hypo again. On day 5 of my experiment I re-started my thyroid meds at a slightly lower dose - I reduced my Levo by 25mcg per day. (I also take T3, but I didn't change the dose of that.) I've been feeling a lot better since I did this.

[Peanut31 in reply to humanbean]

Hi Humanbean

I haven't tried stopping them as I didn't want a roller coaster effect to happen and I am still under the GP. I am going to have to do something and this has crossed my mind.

I have been following the advice to a T, on increasing every 6 weeks by 25mcg and having bloods taken by my GP every 6 weeks. On paper my results look good, but, how I feel is a different story.

I suspect my GP will have no answers as Levo is the only thing he can offer and by all the conversations I have had with him, Levo is the only answer, he is a straight taking person and will not really listen to other ideas, so I have kept quiet on the T3 front. I have ordered the Gene test and if this comes back with issue, I will go back and explain.

It's clear I need thyroid medication as I was really bad when I saw a private endo. He left me to get worse (he refused to put me on Levo) and my results show this.

I have a blood test booked with my GP in a few weeks and I need to keep my results looking good to him, so he can say your fine and then I can go it alone, but I still want my levo prescription.

I have NDT ready if Levo wasn't successful, but I am dreading going back to a low dosage, as presume you have to start again.

Best Wishes

Peanut31

[Aurealis]

Yes I too am wondering if you are overtreated, as tension headaches are associated more with overtreatment.

Keep following your instinct but keep alert to idea that sometimes overtreatment can look like undertreatment because many of the symptoms overlap. That also would fit with feeling worse with Levo increase. Best of luck, you have a tricky situation there, but you will find your way out and feel well again.

[curt504a]

I'm in the states, my Endo told me that women don't convert T3 to T4 that well so he prescribes Armor (used to be Naturoid) to women....

I just don't understand why UK Endo's prescribe just T3 (Levo) to women???

Search on Thyrovanz here:

healthunlocked.com/search/t...

If you can't get them to give you a prescription for Armor or some other mix of T4+T3 then self treat... Which is where folks with cronic problems end up due to getting little help from Drs.. Look into thyrovanz. Best of luck.

[Peanut31 in reply to curt504a]

Hi

Levothyroxine is T4, which is available on the NHS.

This is the first option us UK thyroid patients go by as they are still under the GP’s.

Our health care is a lot different to yours in the states, and you have many more options.

T3 which many of us need is now a no go on the NHS even if you see an Endocrinologist. It’s a very hot subject at the moment due to the increased in cost that the manufacturer has decided to impose. I have purchased T3 from a reliable source at a very reasonable cost, so why the NHS can’t is beyond me.

Many are forced to self medicate with NDT or by adding T3 sourced themselves.

Armour is very expensive for us to purchase from the USA to the U.K. so many buy NDT from Thailand as cheaper.

Your link is a dietary food supplement.

Best wishes

Peanut31

[penny in reply to curt504a]

I think that you may have got that round the wrong way; we convert T4 to T3 and Levo. is T4.

[curt504a in reply to penny]

Yes re Levo is T4 but the point of my reading and agreed to by my Dr Endo is that women are less efficient at that important conversion of T4-->T3, thus leaving those women devoid or low on T3. Leaving one tired and without energy.

From my perspective I read a lot of complaints of still being tired, struggling to tune Levo to filling well. Maye Levo will not work for some women?? And a mix of T4+T3 (Armor, Naturoid, Thyrovanz) may give the desired results?

Doesn't UK have a source of Armor?

Being hypothyroid, hypo androgen myself and having spent many years, adding iodine supplementation (book; Iodine crisis by Lynne Farrow), Topical T, and other oral hormones (still labeled as nutritional here without prescription) I've had my first hand struggle with Levo moving to Naturoid (becoming unavailable)-->Armor (yet again). I experimented with Thyrovanz given the news on the facebook group "thyrovanz" that some folks feel better vs Levo or Armor. Didn't work for me, so I'm back to Armor, and add Levo if high stress days as a back up.

No professionals talk about: high stress days burn up estrogen etc and other hormones and we go hypo off and on as we have stress on and off. Women are more prone to family and work stresses,,, so to me reading of on or off not feeling like hormones / T3 are working makes sense. My wife will starts sneezing repeated, after stress and adding a bit more topical estrogen relives symptoms. So why don't we listen to our bodies and adjust treatment up and down? I know we are still at the stone age, not there yet....

I just mention Armor and Thyrovanz for those who want to investigate further. Best of luck in your well being!

[AnnaSo]

Hey peanut!

To me it looks like you have a conversion problem- your T3 levels barely moved since your first blood test - from 4.12 to 4.71 now despite big increase in T4- from 10.2 to 17.7.

[Peanut31]

Hi AnnaSo

Yes I think your right, it is lagging behind.

It was suggested when on 100mcg to have a further increase of 25mcg, but I feel awful.

I've ordered that Gene test and hopefully this will confirm it.

Thanks for your reply.

Best Wishes

Peanut31

[curt504a in reply to Peanut31]

Peanut see my comment above re armor thryroid, iodine supplimentation book reading, and thyrovaz that is not prescription but is a mix of T4+T3.