After the NHS refused to treat my underactive thyroid I decided to get a second opinion. This led to me seeing a private endocrinologist. Click to read or pin for later.
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Back in March, I took a trip down to Breakspear Medical to see my Lyme doctor. The reason was to speak with him about a change of plan (since I was having a difficult time with antibiotics) and to do some further testing that he felt would be beneficial. The appointment went well and it was decided that I would go back on to a herbal protocol to treat my Lyme disease (which I have been on ever since). My doctor also suggested—among a few other tests—that I should have my thyroid tested.

I’ve had many thyroid tests over the years

I am no stranger to thyroid tests (I actually convinced myself that I had Hashimoto’s many years ago because of my symptoms). However, my blood work has always come back within normal range. I, therefore, initially decided against having another thyroid test done.

At the time my thoughts went along the lines of, “why would I want to waste my money on a test that has always consistently come back within normal range?” I decided to prioritise other things.

So, I parked the idea of thyroid testing in March. It was something my mind kept coming back to over the next few weeks though. I kept reading about the connection between Lyme disease, fibromyalgia and thyroid disorders. Then I discovered a website called Medichecks that offered very reasonably priced thyroid tests. I figured it was worth testing again to completely rule out thyroid disorders. At the very least it would put my mind at rest.

Deciding to retest my thyroid with Medichecks

I purchased a test kit from Medichecks (click here to see the test I used) and when I received my test results I was surprised to find that there were abnormalities. My thyroid stimulating hormone (TSH) was within the normal range but my FT3 and FT4 (two thyroid hormones) were low. I was also positive for thyroglobulin antibodies.

On the advice of the doctor’s notes that came with my test, I went to see my GP. Unfortunately, this is where I came up against a brick wall. My GP suggested that, based on my results, I would be unlikely to be offered treatment. This was because my TSH was normal and my thyroid peroxidase antibodies were normal. These are the two that count when it comes to getting treatment on the NHS.

Despite this, my GP referred me to an endocrinologist based on my symptoms. Unfortunately, the recommendation came back that I did not need to be seen as I did not require treatment.

My symptoms & seeking a second opinion

Personally, I felt my symptoms strongly suggested that my thyroid could use a little helping hand and support. I was feeling so very fatigued and the nature of my fatigue had changed. I was so sleepy it was ridiculous. All I wanted to do was sleep and this wasn’t normal for me.

Plus, my mood was all over the place, I was experiencing anxiety, my skin was dry, I had long been cold intolerant and my hands and feet were always freezing. Not to mention I, of course, had muscle aches and a foggy brain.

I decided to get a second opinion and I sent the results of my thyroid test to my doctor at Breakspear. He commented that he felt I had an underactive thyroid and he would be happy to refer me to a private endocrinologist. I chatted to my family about this and we decided it was worth pursuing. I wanted a second opinion. If I didn’t need treatment, that was fine. But, I wanted to be sure of this.

Seeing a private endocrinologist

I did some research and chose to see an endocrinologist who specialised in thyroid disorders at my nearest Spire hospital. I had my appointment in July and, in the end, I am glad that I pursued this. The endocrinologist that I saw was absolutely lovely and it was the most straightforward medical appointment I have ever had. Plus, she knew about— and was sympathetic towards—my Lyme disease diagnosis, which immediately put me at ease.

She explained the reason why the NHS wouldn’t offer treatment and we discussed a plan of action. I had my blood retaken to make sure the results weren’t a one off. And, though things looked a little better than last time, we decided that it would be worth trying a small dose of thyroxine to see if it helps me.

I feel it’s important to say that I never stopped taking my herbs before this second blood test (I stopped them a few days before the first one). For some reason, it just never occurred to me that I might have my blood retested. I, therefore, don’t know if things had naturally improved or if my herbs were making the situation that bit better. The test was also later in the day and I don’t know if that has any influence.

The decision to try thyroid medication

Either way, it doesn’t really matter. The decision was made that I would try taking a small dose of levothyroxine. My endocrinologist suggested that I see my GP to see if he would be happy to prescribe this. Unfortunately, I couldn’t get an appointment for a month. Thankfully, my doctor at Breakspear was happy to write a prescription for me.

The first couple of weeks on levothyroxine

I wanted to get started straight away as I was fed up of wanting to fall asleep all the time! The first two weeks on thyroxine were rough. I have no idea if it was my body adjusting to the meds if I was experiencing a Lyme flare of if I had picked up some sort of virus. My fatigue was awful, my pain was increased and I felt very flu-like.

Thankfully, this subsided and I started to feel better by the third week of taking levothyroxine, which brings us right up-to-date. I am seeing some glimmers of improvement. My mood has been better, I feel less anxious and my sleep has improved. Plus, I am no longer wanting to fall asleep all the time, which I am very grateful for!

These are very small changes and it’s hard to say if the thyroxine is definitely playing a role in these improvements. I am hopeful that it is though.

I saw my GP today and he is thankfully supporting me and has prescribed the levothyroxine for me going forward. I didn’t actually tell him I was already taking it as I was just about to and he started talking about the NHS vs private healthcare (and not in the most positive way). And it made me feel awkward about telling him that I got a private prescription.

My expectations and hopes going forward

It’s early days and I’m not expecting any miracles from taking levothyroxine. But, I do hope that giving my thyroid a helping hand will help to support my body’s healing. At the very least, if I’m addressing suboptimal thyroid function, it’s one less thing draining my body’s limited resource of energy!
I’ll keep you posted with how I get on over the coming weeks.

If you have any thoughts, helpful advice or want to share your own experiences I’d love to hear from you in the comments below.

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After the NHS refused to treat my underactive thyroid I decided to get a second opinion. This led to me seeing a private endocrinologist. Click to read or pin for later.



  1. Hi Donna, I also have an underactive thyroid, have had for about 27 years now. Before being diagnosed I had all the symptoms that you expressed. It was a relief when finally diagnosed and put on medication (I take synthroid). You have to have some patience when taking this medication for it takes up to 6 weeks for you to feel the full benefits and even then they may have to adjust the dosage again. I now with going through menopause have had to have my medication dosage changed many times and am now on a very low dosage and again just went through the 6 week trial. I find it very annoying having to go through these up and downs. But I least know all my symptoms and know when to go get a blood test. You will from now on too have to take a blood test every 3 months just to make sure that dosage is still working for you. I was for 20 years on the same dosage so once they get it right you should be able to do the same. Once your dosage is correct you will find that your everyday living will improve and you will feel normal again. The mood swings are the worst I think so am always glad to get rid of those since by nature I’m pretty much always a happy person no matter what I go through with aches and pains and so forth. I hope everything goes well for you and that this has helped you a little bit.

    • Hi, Kim. Thank you for sharing your experiences and for the advice. I appreciate that things take time and I am hopeful that the small glimmers of hope I have seen will continue to improve over time. It’s always reassuring to hear people say this to me as it’s a reminder to be patient. I can imagine that menopause would wreak havoc on all of your hormones but I guess it is positive that you have a doctor who understands this and the two of you are keeping on top of this as best as you can.

      Yes, I am being kept a close eye on as I believe there isn’t a huge scope within my bloods and it would be all too easy to send me the other way. The first blood test (which I actually just had done) was at the 3-week mark. My GP will retest me after 3 months but I’m not sure if my endocrinologist will want to test again before then.

      The mood swings are terrible. I was getting overcome with rage for no idea. It was horrible and so unlike me. I am normally a very chilled out person and it would take a lot to get me really angry about something. I don’t know how my family coped with me haha!

      Thank you again, I really appreciate your input. Take care.

  2. I have the same problem. My blood tests typically come back normal when I see my general practitioner.

    Out of curiosity, what is NHS? I’m unfamiliar with the term.

    And also out of curiosity, what’s the difference between a private endocrinologist and a regular endocrinologist?

    • Hi Crys, I live in the UK and the NHS is our National Health Service. So had I been accepted by the NHS endocrinologist I would not have had to pay for medical services/treatment. My referral was refused, which meant I either had to accept that I didn’t need treatment (by NHS standards) or I could get a second opinion from a private endocrinologist (private health care simply put is health care that you have to pay for). I hope that has made sense.

      I am sorry that you have the same problem. Have you asked for a copy of your blood test results to see the numbers for yourself? I think my point in the whole thing was that just because I am within “normal range” it doesn’t mean it is normal for me. This is why I pursued another opinion.

  3. Hi Donna
    Would you mind sharing what herbal protocol you are using for Lyme
    I have suffered and been house bound for
    Over three years
    Bitten by a tick with definate bullseye rash in may 2014 , was never followed up with antibiotic treatment 🙁
    Over the last four years my health has gradually ground to a halt , I have crippling anxiety , severe fatigue , blinding migraines , dizziness to name but a few
    I’ve been on the NHS merrygo round for four years now , passed to a cardiologist for my palpitations , to a neurologist for my severe migraines , to a physchiatrist for my ‘ mental health ‘ and the last of which was a doctor at infectious diseases who came to the conclusion after a weakly positive ELISA and a Negative western blot that I don’t have Lyme disease and has given me a diagnosis of CFS with a prescription for SSRI
    Completely heartbroken and feel so alone as now my family have said they agree and won’t be helping me to pursue Lyme any further , I don’t know where to turn as I have two children that need me 🙁 I need to be healthy for them
    All other bloods come back normal ranges except for a raised ANA which was investiGated by a rheumatologist who did follow up bloods and said I showed no signs of connective tissue disease
    So here I am , spend my days alone in bed with my husband at work and little ones out at school
    Some days I don’t know how il carry on
    The numbness and pain is just so much
    Wondering if it’s worth me pursuing Lyme privately , any help and Advice would be so Greatly appreciated not knowing what is wrong with me is A very scary and lonely place to be …thanks for listening

    Ally – diagnosed with CFS
    Possible Lyme. Xxxx

    • Hey Ally,

      Not at all. I have used various different herbs over the course of treating my Lyme disease and coinfections. My foundation has pretty much always been the Restore Program by Vital Plan. I started taking this in 2015, though at that time I thought I was treating fibromyalgia and didn’t know I had Lyme. I’m thankful I made that decision! Vital Plan do ship from the US, so there typically VAT to pay on top of postage fees (charged when it arrives in this country).

      I would highly recommend the book Unlocking Lyme by Dr Rawls. It provides a wealth of information about Lyme disease and treatment options, including recommendations for herbs. It’s one of the best books I’ve read. Stephen Buhner also has a great book called Healing Lyme. It’s very technical (he writes at a practitioner level) but contains his herbal protocol for Lyme (which is considered the gold standard and what the Vital Plan products are essentially based on).

      If you want to source herbs from the UK, I would recommend Napiers Herbalists and Bristol Botanicals.

      I’m really sorry to hear about your NHS experience. Sadly, it’s not uncommon 🙁 I would definitely recommending reading up and learning as much as you can. And, pursuing herbal treatment is a great step forward. Herbs have been the absolute best thing for me and have taken me from bed bound to where I am now. I still have a way to go to in my recovery but I am far removed from where I started.

  4. Hi Donna, I have had Lyme for 20years, have recently gone through the menopause and am now perusing the possibility of thyroid disfunction. TSH came back normal, so would like to do further testing. Please can you advise how to find a private endocrinologist. I live in North East England.

    • Hey, Linda. So sorry to hear that you have been dealing with Lyme for such a long time. I was lucky that I was having treatment at Breakspear Medical at the time I wanted a referral. I just had to decide who I wanted to see and my doctor there kindly arranged it for me. You should be able to ask your GP to refer you to a private endocrinologist too, though. If you visit the Thyroid UK / Health Unlocked forum you can ask for recommendations in your area. I think you can also email Thyroid UK themselves to ask for a list. Good luck!

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