Thyroid UK
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Needing help

I have been signposted here from AbFab at the antisopholipid page as I have Hughes syndrome.

Here are my results from a few months ago

TSH 0.66 ranges 0.27-4.20

T4 Total 81.9. 65- 142

Free T4 13.99 12-22

Free T3 Reverse T3* 18


Reverse T3 18.74 normal over 15

And my discussion from the APS page

I feel like I only ever come on here when times are hard and I need support.

Brief overview 4 years ago was diagnosed with aps after collapsing. Allergic to Warfarin. In xarelto and 2 years on fragmin injections. Clot physically removed. Insides are stented and an I’ve filter was fitted for two years.

A year later pe , fragmin treated.

Further diagnosis of fibromyalgia

I have severe mood swings. On Prozac but have gained two stone. Family history of thyroid but nhs and private tests has coMe back as normal

The last option is now a hysterectomy. They have told me that this is the very last option available but I cannot see a way forward.

I cannot cope with the irrational thoughts and tempers.

On b12 injection every 3 months and vitamin D every month.

Diet paleo autoimmune which I have started

Marriage in complete tatters and my life feels ruined by Hughes!

I am also a integrative Therapist and have had CBT therapy.

I just need to know if anyone has been through similar or can see something I am missing?

ABFAB response

what dispair you are feeling but reading your post I do feel like you that something has been missed. My instinct is that this is a Thyroid problem. I have personally seen for myself how "being in the normal range" can actually devestate many people's lives because those ranges are not necessarily good for that particular person and there is evidence starting to come out to support this.

When you say normal, would you mind letting me know exactly what that is? If you can put your results on here, all with the reference ranges, I could have a look.

The fact you say that there is a familiar link to Thyroid is also a clue. If you have a DIO2 defective gene then you will post normal results or be in range, albeit probably the low end, yet your body will not be converting T4 to T3 which is the active part you need to get to the cells.

I'm very perturbed that a major op is being suggested before every avenue has been gone down and apart from the mood and depression you don't talk of any other gyny issues that are effecting you. Castrating someone to control hormones would be a very drastic option and can have many other negative implications. It strikes me it would be taking a sledge hammer to crack a nut.

As Ros says you need to find the right Doctor who is prepared to get to the bottom of these things. Let's start with your Thyroid and see if it is the likely culprit as normal does not always mean that.

7 Replies

Are you also a member of this organisation on HU:-

You don't have a Free T3 result but have given the FT4 which is extremely low and I think your FT3 must be negligible but keep in mind I'm not medically qualified.

The fact that you've been diagnosed as having Fibro we had an Adviser to TUK who, before his death, had The Fibromyalgia Research Foundation and Dr Lowe.come but this is now archived. He stated that those with fibro had a Thyroid Hormone Resistance which meant that only T3 in large doses could relieve his fibro patients. I shall give you some links.

I am assuming you've been given Prozac as they may believe your symtoms are due to depression, when in fact they are real and causing you problems. It is always best to get to the root of the problem rather than trying to plaster over them and patient isn't improving.

Before blood tests and levothyroxine were introduced, we were diagnosed upon our clinical symptoms alone and given a trial of NDT. If we recovered we were hypo. (This was in 1892) up until the introduction of levothyroxine (T4 only) which has to convert to T3. T3 is the only active thyroid hormone and is required in our billions of receptor cells

Before considering a hysterectomy (common for a lot of women) but if we are hypo everything, from head to toe is affected and many women get hysterectomies when the problems may be alleviated through thyroid hormones. Misscarriages are quite common in hypo as well.

This is an interpretation of blood results if hypo and also ask GP to test B12, Vit D, iron, ferritin and folate plus thyroid antibodies:-


Thank you for your response

I am indeed a member of the Hughes syndrome page.

Thenprizaccis orescribed for myself on a 30mg dosage to combat my nerve pain and puns and needles caused by the combination of Hughes and fibromyalgia

I have vitamin as ampoules monthly, B12 injections every 3 months and folate tablets as my body seems to not absorb vitamins. My b12 has also been very low, sometimes dangerously low hence why I am in life time injections


Sorry my phone has jumbled up worlds!

Prozac for pain relief

Vitamin D ampoules twice a month


:) don't worry. If you could source some T3 you might find it will relieve your pain/symptoms. They are not prescribing it in the UK at present. I think it should be permitted when someone has multiple autoimmune conditions.

Your FT4 is very low and has to be converted to T3 but doesn't seem to.Because Tt doesn't need to be converted and is absorbed quickly It's work then lasts between one to three days. It is the only Active Thyroid Hormone and it is needed in our millions of T3 receptor cells to enable our whole body to work in unison.

As every single thing is in need of thyroid hormones that's why we have mood swings, impossible to live with but it is due to hormones causing all of these symptoms and it isn't our fault. Why do you think people have symptoms of myxedema? low thyroid hormones and before the introduction of levo etc the introduction of NDT enabled people to recover and not die through myxedma madness.

We are relying on doctors or Endos but most pati'ents have to find a way through the maze to come out at the other end, with symptoms relieved and 'energy' (i.e. T3).

One of our doctors (deceased) was up against the Endocrinology altogether (he was a virologist) and stated that the guidelines are putting patients in parlous situations due to the deference of blood results rather than the patients' symptoms. He would provide NDT or T3 and when he was called before theGMC due to complaints made by ? how many doctors in the UK would have 10,000 testimonials letters sent by grateful patients whose lives he 'saved'.

I am not medically qualified but had undiagnosed hypothyroidism.


Kittybaker ~ please stay with this forum and read the links that shaws has kindly provided ~ it does sound like the solution to your 'fibromyalgia' may lie here. Good luck, try not to get too stressed, there is help available.

Warmest wishes Mamapea x

1 like

And please dont have a hysterectomy. If they dont know what is wrong, why are they suggesting major surgery!

Have you had your sex hormones tested?


No I haven’t had that tested.


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