Pain consultant diagnosed fibromyalgia but asked GP to do thyroid function tests. GP refused! Tests done privately and results in...

[MacG]

Please can anyone comment on the following results which are for my sister. She was recently diagnosed with fibromyalgia by a pain consultant. Give him his due, he did request thyroid function tests as well. GP refused so I advised my sister to get them done through Blue Horizon.

I think that the results suggest borderline(?) hypothyroidism because of the raised TSH and low FT4 (just in range). Before my sister goes to her GP with these results I want to be "fully armed". Please if anyone can comment that would be much appreciated.

TSH: 5,23 (0.27-4.2)

FT4: 13.65 (12-22)

FT3: 4.7 (3.1-6.8)

Peroxidase Antibodies: 85.5 (No range as such given, but less than 60 is "negative" and 60-100 is listed as "equivocal") .

For reference, my sisters symptoms are:

1) Fatigue which is so bad she often has to go back to bed in the morning two or three hours after getting up. She has some lunch then sleeps most afternoons. She is struggling to work - which she does between 5-8pm.

2) Back and joint pain. She now walks with a stick. It was the "pain" consultant mentioned above who suggested the thyroid tests.

3) Weight gain - but could be due to inactivity caused by 1) and 2).

4) Dreadful brain fog.

Also may be relevant to that my sister has Type 1 diabetes, another autoimmune condition and that I have been diagnosed with Hashimoto's and also the DIO2 test showed that I have inherited the "faulty" gene from both parents. My mum has just been diagnosed as having thyroid problems (but this was HYPERthyroidism). So there is clearly something familial going on.

Any thoughts/opinions much appreciated

[Treepie]

I think you are correct. The thyroid is failing but treatment is unlikely until TSH is 10 unless she sees an enlightened GP.

[MacG in reply to Treepie]

Many thanks for getting in touch Treepie. I had heard about the TSH 10 cut-off but didn't perhaps appreciate how widespread this might be. Useful that you flagged this up.

[bluebug in reply to MacG]

NICE guidelines.

You can Google for them.

[MacG in reply to bluebug]

Many thanks! Will do.

[TupennyRush in reply to MacG]

Check the bit on NICE about people with 'normal' ie below 10 tsh with symptoms being offered a trial of levo to see if this helps

I was given a trial by my GP 3 years ago and have been taking levo/ndt ever since

Are you taking t3/ndt because of you Dio2 result - I have one version of the gene snp and feel miles better on ndt

[MacG in reply to TupennyRush]

Hi TupennyRush,

I will check that out.

I am taking a combo of T4 and T3 because of the DIO2 result. Am so much better.

Glad to hear that you are getting treatment.

[lc1973]

I think you are on the right track with thinking hypo or even hashimitos with the TPO antibodies but like Treepie says below your sister is unlikely to get any treatment until the TSH reaches the all important number 10! Unless her GP is knowledgeable on the benefits of early treatment. In my experience i had symptoms well before diagnosis and it was many months of re-testing to confirm but mine was certainly 10 or thereabouts before they would prescribe sadly. You also mentioned fibromyalgia which i have been told i also have but this was diagnosed long after hypothyroid diagnosis and infact when my thyroid medication was increased a lot of the aches and pains diminished too there is certainly a cross-over of many symptoms but pain medication wont help your sister with the fatigue apart from maybe getting a better nights sleep in my opinion. Hope this has been of some help and that you can find a way forward.

[MacG in reply to lc1973]

Thank you for your good wishes Ic1973. Isn't it dreadful that treatment might be delayed. She does see an endocrinologist about every six months or so to monitor her Type 1 diabetes and although I have suggested previously that she raise it with him, I don't think she wanted to "rock the boat". She is getting nowhere with her GP, so perhaps she now she will feel more able to raise it with her endocrinologist.

[CarpaBob]

Was it a private pain consultant or an NHS consultant? If NHS she could make a complaint about the doctors refusal to follow the request. Guidelines state that a trial of levothyroxine should be offered where tsh is above reference range but below 10. However as the tests have been done privately it's possible that gp will refuse to listen, if they do then include this in the complaint with a copy of the tests and symptoms.

One more option is to change gp surgery and hope a new gp is more helpful!

[MacG in reply to CarpaBob]

Hi CarpaBob,

It was an NHS pain consultant. She has a copy of the letter. Unfortunately, she cannot change GP as there is a bit of a crisis in the area and no other surgeries are taking patients. She has already complained about her GP!!

Could she see a private doctor who would prescribe a trial of levothyroxine to see if this helps her symptoms?

[CarpaBob in reply to MacG]

Has she formally complained about the fact the gp has refused the nhs consultants request? Also ask for the gps reason in writing of why they refuse to treat. Will she be seeing the pain consultant again?

Yes she could go private, I have no idea of cost though, they also may be happy to go off the tests already done or they may want their own which will increase cost.

[MacG in reply to CarpaBob]

Thanks for getting back to me CarpaBob, no she complained about something else recently, so this would be a second fresh complaint. Thyroid aside, she is having a dreadful time with her GP one way or another. Good thinking re. pain consultant - I'll ask her when she is seeing him again.

[CarpaBob in reply to MacG]

I am in a similar position myself, diagnosed fibromyalgia last year but since then have discovered I am hypothyroid, low in b12, vit d, folate and ferritin. Now being tested for coeliac disease. I have had to fight and am only just starting to get somewhere. I want to make sure everything else is sorted before I accept the fibromyalgia diagnosis and consider taking the drugs they prescribe for that. Some of my earlier posts may be worth a look at as I had some good advice and links from others that helped me with my letter to the gp. Good luck 😀

[MacG in reply to CarpaBob]

Many thanks for everything CarpaBob. I will check out your earlier posts.

[Hidden]

It varies from gp to gp. The result is over the range, there!s a family history, raised antibodies and strong symptoms. The gp may well treat.

[MacG in reply to Hidden]

Hi Aspmama,

Thank you for taking the time to respond. Here's hoping.....!

[SlowDragon Administrator]

As she has Hashimoto's the guideline do say treatment can be started....if patient has symptoms

Email Louise for the statement made by Prof Toft.

Also suggest you get Vit D, folate, ferritin and B12 checked. These are often low in Hashi patients. Brain fog could be B12.

As you have DIO 2 it is likely she does too. Can you get that tested?

Lastly going gluten free, may reduce symptoms

[MacG in reply to SlowDragon]

Hi Slow Dragon!

You've given us plenty to follow up here.

The raised antibodies are only in the "equivocal" region at the moment, so Ican't see the GP acting on that.

Will certainly get hold of the Toft statement.

I know that her vitamin D has been low, but she has been taking something for that. Will mention other readings (folate etc.....) as well to her.

If the GP is not going to go with the basic thyroid function results as they stand, I can't see them taking any notice of the DIO2 results, but it might be more ammunition. I have a fantastic GP. Even though it was all news to her she was willing to prescribe a combo of T4 and T3 on the strength of it.

Gluten free (hmmmm.....) I have been following a strict gluten-free diet now for a couple of years and my family think I am a bit of a crank with it..... It has made a difference to me. I'll do my best!!!

[SlowDragon Administrator]

Suggest she reads "Hashimoto's - the Root cause"

Might help persuade her that gluten free is worth trying

Also

chriskresser.com/the-gluten...

23 years diagnosed with Hashimoto's - 23 of hell for me - transformed by giving up gluten this year - pity I was not advised that, even with negative coeliac test...that it would be worth trying!

[MacG in reply to SlowDragon]

It is interesting that you mention coeliac disease. They tested for coeliac disease when I was making repeated visits to the doctor prior to diagnosis. It came back negative, but it is interesting that I was also diagnosed with osteoporosis just before I was diagnosed with Hashimoto's. As far as I was concerned, there was no reason for the osteoporosis. I had an excellent diet, enjoyed fell walking (when my health allowed) and was not menopausal with a regular cycle. Everything else (Vit D/iron levels etc...) were also by this point completely depleted (my Ferritin was 7). When I went gluten free I thought about the osteoporosis and the way in which my system was depleted. Of course, untreated coeliac disease can result in osteoporosis and anaemia. I am not saying for a moment that I think it was coeliac disease, but it just seemed to be the right thing to do to go gluten free.

I'll see if I convince her to give gluten-free a go.

[SlowDragon Administrator]

Just because it is "only" gluten intolerance not coeliac, you can still get low Vit D, calcium and sometimes magnesium too.

The main problem is there isn't an easy test for intolerance 😟

[MacG]

Many thanks for this Sandy12. Thyroid Hormone Resistance is not something that was on my radar.