Help with my results please?

[Thywotsit]

Hello,

Firstly thank you for taking the time to read this.

I would really appreciate any thoughts on my rather extensive set of numbers!

I apologise for the headache but it seemed important to include all as they are really quite variable.

I’ve had a history of tiredness for a few years now starting with nodding off as soon as I sat down of an evening, and general lethargy.

This progressed 18 months ago to an episode of about 9 months of what felt to me to be all of the symptoms of hyperthyroidism - everything was working very fast and I had to eat constantly to manage a physical job.

I’d more often than not feel like my batteries had been ejected suddenly, usually following a strange abdominal burning which was not gut related.

Even my doctor at the time thought it couldn’t be anything else but the results apparently weren’t out of range enough for treatment/endo and I was sent down the cfs/me referral, which I don’t feel I fit into.

I believe I have swung more into hypothyroid symptoms now.

I have experimented with diet a lot which helps some and testing looks like things are stabilising?

Antibodies have reduced and I do feel better than I did but I still have a lot of symptoms and flare ups.

I am going to try self medicating and see.

Previous vitamin testing showed optimal vitamin D and B12 levels always come back as too high.

Testing was done early mornings.

18.10.2019

TSH 4.81 (0.27-4.2)

FT4 14.8 (12.0-22.0)

07.01.2022

TSH invalid

FT4 23.8 (12.0-22.0)

22.01.2022

TSH 0.22 (0.27-4.2)

FT4 12.8 (12.0-22.0

21.02.2022

TSH 5.92 (0.27-4.2)

FT4 9.7 (12.0-22.0)

TPO 259 (<34)

04.05.2022

TSH 2.87 (0.27-4.2)

FT4 13.7 (12.0-22.0)

FT3 3.9 (3.1-6.8)

TPO 251.5 (<34)

TGAB 250.5 (0-115)

21.05.2022

TSH 2.41 (0.27-4.2)

FT4 11.4 (12.0-22.0)

11.11.2022

TSH 3.09 (0.27-4.2)

FT4 15.8 (12.0-22.0)

FT3 3.7 (3.1-6.8)

TPO 126.2 (<34)

TGAB 160.3 (0-115)

15.04.2023

TSH 3.25 (0.27-4.2)

FT4 15.3 (12.0-22.0)

[greygoose]

Hi Thywotsit, welcome to the forum.

So, what your bloods are saying is that you have Hashi's. And, so far, the damage to the thyroid isn't so bad that your thyroid is incapable of producing hormone, but it is struggling to do so, and needs a lot of stimulus by way of the TSH.

However, you have had two over-range TSH. So, that plus the high antibodies and the very low FT4/3 should mean that your doctor gives you a diagnosis of Hashi's/hypo. Seems he doen't know that.

You are feeling bad because of the low FT3, not because of the antibodies. Although we use antibodies to diagnose Hashi's because they're usually high (but not always), they are not the most important number. They fluctuate all the time and tend to be highest after a Hashi's immune system attack on the thyroid, when they come along to clean up the blood.

But, it's not just the antibodies that fluctuate with Hashi's. All the numbers can due to the thyroid hormones that leak into the blood during an attack. And the TSH doesn't always correspond to thyroid hormone levels (as it should) because it doesn't move as rapidly as the hormone levels themselves. So your results are pretty standard with Hashi's.

Do not accept a diagnosis of ME/CFS. That is what we call a dustbin diagnosis because doctors use it when they have no idea what's wrong with you - although, frankly, with your results your doctors should know! And the problem is, once that is on your records, no-one will take you seriously, and you'll have trouble getting a true diagnosis for your hypo-Hashi's.

I'm not sure if I'm answering your question, or even if I'm making myself clear, so if you have any further questions, please do ask them.

[Thywotsit in reply to greygoose]

Greygoose, thank you,

You’ve done an excellent job of explaining things to me - I am still in the early stages of the understanding.

Thank you for your detailed reply, it is very much appreciated.

That makes perfect sense, particularly the fluctuations in response to a struggling  thyroid, which is what I was wondering…I really just wanted to run things past some knowledgeable people and your information gives me a much clearer picture.

I intend to reject a cfs/me diagnosis as you suggest, I know/know of many people who have been dumped into this box and it is worrying to think that people are not receiving the treatment they might require.

I have also been given a new, recent, high cholesterol marker which I now know is indicative of this condition.

I am otherwise usually fit and strong and my diet has always been great although lately I just want to eat the world. Sometimes I do!

I have some NDT on its way, I hope, but It seems like it will be a bit of a financial investment to get things under control…

Thanks once again!

[Gingernut44]

Do not accept a diagnosis of ME/CFS, as Greygoose has said, it’s a dustbin diagnosis. There are many causes of fatigue. Also, do not start self medication. Push your GP for a trial of Levothyroxine first. If you self medicate without a formal diagnosis of hypothyroidism, you’re never going to get one and it won’t be on your medical record. It’s a mistake you’ll probably regret in future. It’s also likely that Levothyroxine may just be enough for you but you won’t know if you don’t try. Once you have a diagnosis and are being treated on the NHS, all future prescriptions will be free of charge, not just thyroid hormones.

If your GP won’t help, ask for a referral to an Endocrinologist but make sure it’s someone who has knowledge of thyroid dysfunction, you can request a list of suitable Endos from ThyroidUK by email.

[Thywotsit in reply to Gingernut44]

Thanks for your reply Gingernut 44,

I agree with what you say and I have considered this as regards to a future diagnosis.

Unfortunately my gp tells me that I don’t tick the boxes for endo referral and it also took 6 weeks to get an appointment for my last bloods and 5 weeks after to review them which is coming up next week.

Meanwhile over 18months of feeling rubbish and I am keen to be getting things back on the right track.

I will certainly push for a trial and see where I get with that but I am not optimistic.

Many thanks for your advice.

[greygoose in reply to Thywotsit]

I totally agree with Gingernut44 , it would be a mistake to start self-treating at this point. Not only because it will hinder you in getting a diagnosis, but also because I very much doubt you know enough/have enough experience to understand what you're doing and why. NDT doesn't suit everyone, so what would you do if it doesn't suit you? You are only just beginning on this journey, you have a lot to learn. It's complicated and you could make things worse for yourself. It's also expensive, and you have to be sure you can continue to pay for it indefinitely. And, whilst doctors know next to nothing about thyroid, there are advantages to being inside the system, rather that out on your own, if you can.

I realise you've been suffering for a long time. It took me over 40 years to get diagnosed. So, I know how hard it can be. But, don't rush into anything you will regret.

[Thywotsit in reply to greygoose]

40 years is a very long time indeed - you must have a huge wealth of knowledge of this condition.

I don’t know enough, you’re right and I would rather stay in the system if I can.

It’s good advice, I will try and do it through the proper channels.

I am impatient, it’s hard isn’t it, it shouldn’t be so.

Thank you again.

[greygoose in reply to Thywotsit]

Impatience is our biggest enemy. You didn't become hypo over-night, so you won't get well over-night, either. Trying to walk before you can run can have catastrophic concequences and set you back a long time.

With Hashi's, your thyroid is slowly being destroyed, so things are going to get worse - eventually to the point where doctors can no-longer ignore it. I don't know if that's a comfort, or what, but that's the way it is. But, until your TSH goes over-range, I very much doubt any doctor - private or NHS - will be interested.

[Gingernut44]

If your GP won’t play ball, I suggest you find a private Endo. Once given a trial of Levothyroxine, and if it works for you, then the Endo can instruct your GP to prescribe, especially if that Endo also works in the NHS. Put your big girls pants on and throw a paddy until you get some attention 😊

[Thywotsit]

Ha yes!

I did don said pants at the last appointment!

My doctor is a bit old school and also very by the book, and no interest in symptoms at all. I asked him so many questions he didn’t have the answers to, he might just refer me to get rid of me.