Self medicating and really struggling. - Thyroid UK

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Self medicating and really struggling.

Peanut31 profile image

Hi

I’m absolutely fed up, exhausted of feeling so dreadful. I take one step forward and five back. At the moment I can’t see an end to this thyroid journey.

I don’t know what to do next, or who to turn too.

Brief history, you’ve heard it before, diagnosed with Hashimoto’s by a private Endocrinologist. He told me no medication would help. Parted company, after spending hundreds seeing him.

Tried to help myself, got vitamin levels up, gluten free etc.

Fast forward a few months later health deteriorating went to my GP surgery, GP said anxiety, I had been misinformed about Hashimoto’s, and how could she help if Endocrinologist said there was nothing that could be done.

I went away thinking it was all in my head and that was how my life was going to be from now on.

Fast forward to March 2018, could hardly walk, function hubby took me to see my allocated GP, never met him before.

Anyway, did full thyroid, a few days later I got a call to go back, TSH 12.2 and other results out of range.

I was started on Levothyroxine straight away, with guidance on here I started on 50mcg of Levothyroxine and had blood test first thing in the morning every 6 weeks, with increase of 25mcg each.

I never felt well on Levothyroxine despite increases, I got up to 125mcg.

TSH suppressed etc, GP got nervous about more increases, and decided after I couldn’t take the symptoms anymore to stop Levothyroxine and try self medicating on T3.

I decided on T3 as I was experiencing terrible joint pain that sounded similar to fibromyalgia, I had terrible neck stiffness which effected my mobility.

The difference after taking T3 was fantastic.

I Slowly increase to 37.5mcg by taking 3 dosage a day. 12.5mcg each dosage. I didn’t feel perfect on it, but I could think straight, no neck pain etc. I tried several times to increase the dosage, with negative results.

I have now started to go down hill, from my recent previous post, I am experiencing really bad blocked ears, ringing in my ears and really intense neck pain and sharp pain in my head. My scalp is really tender and my inner ears feel blocked. I have no pain from my ears, but my neck is so stiff and awful head pain when I move my head.

I was given antibiotics and this is not helping.

I have noticed a connection that when I take T3 after an hour or so the neck pain, and sharp pains in my head intensify so much so it’s stops me doing things.

I’m thinking that my body doesn’t like T3 anymore, any ideas?.

I’m going back to my GP tomorrow to ask for a different antibiotics as I go away on holiday Saturday.

I recently had a cortisol blood test and saliva test and it showed high cortisol

I have low DHEA and testosterone results. I’ve read Dr Peatfield book that until you sort out your cortisol problems no medication will help.

Blood cortisol taken 8am

453.000 (166.00-507.00)

Saliva cortisol

Waking *23.800 (6.00-21.00)

12.00 *7.920 (1.50-7.60)

16.00 3.370 (0.00-5.49)

Before bed <1.5 (0.00-1.99)

I haven’t had a recent blood test on T3 as I read you can’t really go by bloods on T3.

I just want some guidance, I don’t know what to do, I think I may need to see an Endocrinologist, but after the last idiot, I’ve lost all hope.

Just wondering why my T3 is making me feel so bad, I’m certain the ears are connected to thyroid.

Best Wishes

Peanut31

36 Replies

When taking any form of T3 then results are read very differently. TSH will be suppressed, FT4 can fall down the range but FT3 should be high in its range but never over so you need to get tested to see where your FT3 is in the range. The thing you can't test when taking T3 is whether you are converting well as you need both an FT3 and FT4 result but once on T3 then only the FT3 result can be relied on but as you are taking T3 only you have bypassed that. I only mention it though as not converting well could be whyvyou weren't very good on Levo. If you have been on a stable dose for 6 weeks then I would get bloods done and we can see exactly where your FT3 is. My gut reaction is you may be taking too much and/or things like Vit D, B12, folate and ferritin aren't optimal so you thyroid isn't getting enough help to work as it should and many find that until that is addressed they struggle to deal with either NDT or T3 only. I understand Medichecks and Blue Horizon do a combined thyroid panel/vitamins and asthe FT3 is an essential to test I think the only way to guarantee that being tested is to do a private test.

Peanut31 profile image
Peanut31 in reply to silverfox7

Thanks for your reply, I’m sorry for the delay in replying.

I ended up in A&E yesterday, I had a stiff neck and terrible sharp pains in my head which were not going.

I had ENT look in my ears, and said I didn’t have an infection after all, despite being given antibiotics.

They gave me an MRI scan of my brain as worried I had a bleed on the brain. This was clear, but, then proceeded to tell me that they wanted to perform a lumbar puncture.

This was the night before I was due to go on my holidays with my family and informed me I could go away. Needless to say I was very distressed. I was on my own as my hubby was at work and not local to me.

After two consultants spoke to me, and having further tests (bloods) they decided against the idea, sent me home with muscle relaxer tablets and booked me for an MRI scan for my neck. I got home at 10pm from being there since 10am.

The service I received was fantastic, but worrying.

They could answer why my ears are blocked and put it down to a virus, the stiffness in my neck they think is muscular.

I made it on holiday, once I get home I look at all your suggestions.

Best Wishes

Peanut31

silverfox7 profile image
silverfox7 in reply to Peanut31

Oh dear, sorry to hear that but glad they haven't found anything serious. Sounds as though they were very thorough so good from that point of view.

If you’ve read Peatfield’s book you could actually go and see him. He used to do clinics in various parts of the country. He is very good and understands the darker corners of Hashimoto’s.

Peanut31 profile image
Peanut31 in reply to Mikiviki

Thanks

Best Wishes

Peanut31

T3 Pooling - look it up... Stop The Thyroid Madness. Yes, the cortisol is a problem, low / high iron (haemachromatosis) can also be responsible. Have you had an iron panel done? Low Zinc can make cortisol too high.

greygoose profile image
greygoose in reply to HLAB35

Can you please explain exactly what T3 pooling is? T3 has such a short half-life that I don't see how it can 'pool'.

endomad profile image
endomad in reply to greygoose

Paul Robinson says no such thing as t3 pooling and he has spent some years on the research. I thought only t4 pooled due to lack of conversion but i use to read so much stuff that im never sure if i remember it correctly to be honest. I am thyroid resistant but that is different and means i have to take more t3 than some.

greygoose profile image
greygoose in reply to endomad

Yes, that's what I think, too. I'm just waiting for someone to convince me otherwise. :)

endomad profile image
endomad in reply to greygoose

I will wait in anticipation with you x

greygoose profile image
greygoose in reply to endomad

:D

HLAB35 profile image
HLAB35 in reply to endomad

Agree that t3 can't exactly 'pool', but I do believe it may be blocked by high cortisol levels, or conversion is impaired due to high cortisol.

HLAB35 profile image
HLAB35 in reply to greygoose

I agree that the concept is unlikely, sorry, I had little time to justify it this am. (busy day) and I should have used inverted commas; the understanding of what is going on at a cellular level seems untested too. However, the symptoms could possibly fit the symptoms of the thing that is currently called by the Stop The Thyroid Madness team 't3 pooling'.

It would be better to call it 't3 blocking' as I suspect that high cortisol is acting as a bit of a 'block' to thyroid hormone. I know that when I have high cortisol, usually due to stress, that my energy suffers and my hypothyroid symptoms begin to creep in.

greygoose profile image
greygoose in reply to HLAB35

So, when STTM talk about T3 'pooling', what they actually mean is hormone resistance at a cellular level? How confusing! Never did like STTM.

HLAB35 profile image
HLAB35 in reply to greygoose

Yes... that's how I've interpreted it.. it's not the best way to describe it, agreed. It's not saying what it does on the tin :-)

greygoose profile image
greygoose in reply to HLAB35

That's for sure!

Peanut31 profile image
Peanut31 in reply to HLAB35

Thanks for your reply.

I’ll look into this.

Best wishes

Peanut31

I don't think T3 pooling exists - no scientific evidence, but some people need both t4 and t3 to feel well. You also need optimal levels of B12, folate and ferritin. Pain, esp neck pain could be B12 or vit D. Head pain is often magnesium related. Or can be related to fillers in tablets, esp if you changed brands or manufacturer reformulated.

Yes, 't3 blocking' would be a better expression. I agree that t3 can't exactly 'pool'!

I have extremely low cortisol, i have tried everything, supplements, NAX, adrenavive 1 & 11, ashwanga, you name it iv spent money on it, nothing has budged it up. My endo and me agree steroids for life is no way forward so just trying to manage stress and mostly failing. I am t3 only and i have great times followed by awful crashes and back to square one. I keep all vits etc optimal but the cortisol has beaten me.

I had 5 years of hell no treatment then levo, ndt and now finally t3 only. I am deff better but still only 80% there, it has taken a long time and a lot of tears to get this far. We just have to keep doing the right things and do the best we can, i still spend entire days on the sofa when i have no energy but i have more life now. Stick with it. Keep your list of symptoms as you will forget when they go! your post reminded me of my neck, it was so rigid that first time it cracked i was frightened i had broken it turning over in bed, had forgotten that my neck was so painful and solid, ankles were the same. I got better slowly and in small increments. 2014 was the absolute end for me, i thought i would be dead by xmas.

The hardest part is the fear, frustration, feeling shit all the time but it can get better <3 i am sending you love xx

If you really have low cortisol, endo should be treating with hydrocortisone as it is life threatening - yes, it is a steroid, but it's really no different from taking levo or T3. You can self-medicate with HC, but you need to be sure that you really need it. I find Adrenavive III works (but I also have DHEA on prescription). NAX didn't.

To self-treat with HC, you really need to know what you're doing, or you could shut your adrenals down for good. I wouldn't recommend it.

I agree. That's why I said that endo should be treating. It's possible, but not recommended.

Hi

I don’t have a Endocrinologist anymore, I got rid of the one I was using when he left me to get worse after diagnosing me with Hashimoto’s.

He said no thyroid medication would help.

I’m currently getting guidance from Paul Robinson, but I’ve emailed Louise for the list of friendly Endocrinologist.

If anyone has a good one that thinks outside the box, please PM me.

Best wishes

Peanut31

Hi there - I went on T3 thinking it would solve my quite weird symptoms - I went on NDT - sweating - literally pains all over etc. etc. - I did not feel well at all - was exhausted - my hair falling out etc. etc. - all the symptoms of LOW thyroid - but didn't think it was anything to do with the NDT - eventually I saw an endo who said you have all the symptoms of being over medicated and could be damaging your heart (the sweating). All your symptoms tell me you are taking too much T3 and you need to be careful. The higher cortisol is your body struggling to supply adrenal strength to keep up with your higher medication - i eventually came off and my health improved - although still not right - then I found out I had lactose intolerance and hadn't even been getting the right amount of T4 etc. even though blood tests showed I was fine..............I also went on low steroid dose which helped the adrenals. I am now taking DHEA and Pregnenalone but would not recommend you do this until you sort out your meds and perhaps go back to just T4. These two hormones help the adrenals so you wouldn't have to go on prescribed steroids. Please be careful the symptoms you are suffering could be high blood pressure etc.

Hi

Thanks for your reply, my blood pressure is always fine, I checked this several times a day, but I agree I could be taking too much T3 after what you have said.

I’m currently away but, once back I’m going to have to do more research on my symptoms.

Thanks for your reply

Best Wishes

Peanut31

What about taking Levo again and adding a little T3 to the dose. Take the T3 first thing in smallest dosage and then the Levo at night before bed. Your GP should be able to help you and then after six weeks take a private blood test for Thyroid, Antibodies and Vitamins. Have you tried the two together?

Peanut31 profile image
Peanut31 in reply to

Hi Bunnyjean

I did try lowing my T4 and adding T3, and it wasn’t very successful, however, I don’t think I gave it enough time.

My GP is not aware I’m taking T3, I’ve tried twice to speak about T3 to him only to be told everyone converts T4 to T3.

Even though I didn’t feel on T4.

Best Wishes

Peanut31

Hi Peanut,

So sorry to know you're still struggling so badly. It would be good to know what your vitamin D level currently is. Could you place an order with Medichecks for vitamin D, b12, ferritin and folate before you go for your holiday then the kit will be ready for you when you get back?

If I've not managed to reach you with this reply before your holiday, I hope you had a good time and feel more able to continue with your thyroid journey. Take care.

Peanut31 profile image
Peanut31 in reply to Highland49

Hi

Sorry I didn’t reply sooner, yesterday was the day from hell.

I was in A&E, my neck stiffness, pain and my headaches were too much to take, this had been going on for weeks, despite being given antibiotics for an ear infection and not getting better.

Anyway I had an MRI scan on my brain as they were worried I had a bleed on the brain. This was clear, but then they informed me I was going to be admitted and have a lumbar puncture. This was the night before I was ✈️ on my holidays.

After several consultations from different doctors, it was decided to forget that idea, to discharge me and book an outpatients appointment for an MRI on my neck and send me home with muscle relaxant pain killers as they think it’s muscular.

It was a rollercoaster of emotions, I was on my own in hospital as hubby doesn’t work local, I felt terrible and awful that I may have to cancel our family holiday, plus frightened about the lumbar puncture.

I also had a nurse insert pain killers up my derrière, yep you name it, it happened to me, it was so embarrassing.

I’m now on my holidays, ✈️🏖, and once back I’ll look at my bloods as I’m sure I had some recently.

Best wishes

Peanut31

Highland49 profile image
Highland49 in reply to Peanut31

Phew, pleased you got away but what a horrible experience. I hope you manage to have a good time.

I expect you feel the same, but feeling vulnerable if my hubby was away hit me really hard recently. So not used to feeling like that. I can then empathise as to how someone elderly must feel.

Peanut31 profile image
Peanut31 in reply to Highland49

Thanks for your kind words and support.

Take care & Best Wishes

Peanut31

Thanks for your support and reply.

I had an awful day yesterday, ended up in A&E, my neck stiffness and intense headaches were debilitating.

Anyway to cut a very long story short, after a MRI on my brain, this was clear, but they wanted to do a lumbar puncture to rule out a bleed from the brain.

After further discussion by two specialists and a blood test, they decided against this. I was given muscle relaxers and an outpatient appointment for a MRI on my neck.

This was after they told me that I was going to be admitted and I couldn’t go on holiday the following day. I was a living hell.

I’m now on holiday 🏖✈️, I hope the sunshine will help. Once back I’m going to have to look further into my issues.

Best wishes, take care.

Peanut31

Please can you start again and make a private appointment with a very good endocrinologist (thyroid) at London Bridge Hospital - either Jake Powrie or Paul Carroll. Start again with diagnosis and treatment programme! They are good but try starting anew.

janveron1

The neck pain you mentioned makes me wonder if you weren't having a hypertensive crisis from the t3. One of the big indicators of hypertensive crisis is stiff and painful neck. Have you begun taking any other medications some of them are notorious for causing hypertensive crisis.

Additionally I think that's one of the indicators of hyperthyroidism is very high blood pressure so maybe your t3 is too high I hope you get in and get some tests soon especially the have them test your blood pressure?

Best wishes and happy healing!

Hi

I’ve been diagnosed with chairi malformation this is causing neck stiffness.

My neck stiffness has passed at the moment.

Best Wishes

Peanut31

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