HELP! - I'm about to be diagnosed with Fibromyalgia

I finally got my recent blood results (including T3) and got to see my GP. He said all my results are normal, including my thyroid results and B12. The only problem he can see is high serum osmolality and he will refer me to endocrinologist to check for diabetes insipidus – very rare disease affecting water balance. He said that its unlikely though, and if it comes as negative he will diagnose Fibromyalgia.

My symptoms:

Fatigue

Muscle aching

Memory problems

Tingling in fingers of both hands

Ringing in the ears

Sleep disturbances

Irritability, impatience and mood swings

Easy bruising and wounds taking long time to heal

Increased susceptibility to and increased length of cold/flu

Im currently taking: 150ug levothyroxine, 3x210 ferrous fumarate (iron was 5umol/L [5-33] 5weeks ago) with 3000ug vitC daily, vitD 5000iu daily with K2 MQ7 and magnesium, B100 complex, B12 2000iu sublingually (started after last blood test) and selenium 100ug.

My latest blood results:

TSH <0.03 mu/L [0.2-6]

Free T4 19.9 pmol/L [10-20] , that was 18.4 5weeks ago

Free T3 5.6 pmol/L [3.5-7]

Vit B12 424 ng/L [180-910], this was 308 5weeks ago and I supplemented with B100 complex since then

Serum folate 18.47 ng/ml [5.5-24], this was 16.7 5weeks ago

Serum CORTISOL 331.47 nmol/L [range at 9am 120-620, range random 85-450, test done at 8:30am]

Also, sex hormones were done if anybody knows anything about them, Im on the mini-pill so I don’t know which range should I look at.

FSH 5.3 u/L [range follicular 1.3-6.3, range mid-cycle 2.3-20.9]

LH 4.7 u/L [range follicular 0.8-25, range mid-cycle 25-57]

Oestradiol 120.87 pmol/L [range follicular 102-631]

Prolactin 198.6 mu/L [<400]

I thought that low T3 would explain my symptoms, but it seems to be mid-range so no conversion problem. GP will not increase levo even by 25ug because my TSH is already very low. I worry that if Im diagnosed with Fibromyalgia, that will just give them a chance to say: “nothing more we can do”. Any advice will be greatly appreciated.

20 Replies

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  • Well, you can refuse the diagnosis, you know.

    Actually, you don't have to have zero FT3 to have a conversion problem. You don't convert very well, as it happens, because your FT4 is up the top of the range, and your FT3 is only just over mid-range. They should at least be equal distances through the range, if not the FT3 higher than the FT4. Your FT3 could be higher, and that could explain your symptoms. But, don't expect a doctor to understand that! They'd far rather just 'diagnose' you with fibro and wash their hands of you.

    How about your vit d and ferritin? Has he tested those? If not, then he hasn't finished his job. They could be low and causing problems.

    Your B12 could be higher, too. It should be at least over 500. Have you tried taking sublingual methylcobalamin, 1000 mcg, for a while? There's not much B12 in a B complex.

  • Sorry, pressed submit by mistake.

    I was going to say my vitD was 23.8ng/mL (deficiency) about 2 month ago. I was taking 2000iu D3 to start with but after joining this forum few weeks ago I have been taking 5000iu D3.

    My ferritin was tested 5weeks ago and it was 55ug/L (10-291).

    Since the blood was taken last week I have been taking 2000ug B12 sublingual, but Im now going to buy Jarrows 5000ug sublingual.

    Is there anything else I can do?

  • Well, it would be a good idea to supplement your iron, I think. Have you already asked that question on here? If not, I should do so, if I were you.

  • Yes, I already take 3x Ferrous Fumarate with 3000ug vit C a day. It's been about 5weeks since I started that. I will be taking it for another 2months and then re-test. I also eat 500g of liver per week.

  • OK, well you should feel better as that level rises.

    Have you had your antibodies tested?

  • I just had my blood taken today for Medichecks. I guess it will be few days before I know the answer.

    I also did test for iodine as I was thinking of supplementing with something like TH207 but was worried about the kelp in it.

  • You're right to be worried. Not a good idea at all. Even if you test deficient, you would need to supplement under the supervision of a doctor who knows what he's doing. It's not as simple as just taking a supplement.

  • Oh :(

    The problem is that most of the thyroid supplements I looked at contain iodine. Do you know any good one that doesn't?

  • You don't want a thyroid supplement. These bunches of minerals and vitamins all stuffed up together in one pill are a very bad idea. I very much doubt if they'd help, and could do harm.

  • Yes, I know you are right. I am just holding on to any smallest chance that something would work and suddenly make me fell better. I am working on iron, vitD and vitB12 already. Don't feel any difference yet. That's why I'm looking into thyroid and maybe adrenal support. And when GP mentioned fibro today, I just got really scared that I will be stuck with that with no help. Maybe (hopefully) my T3 has to be higher in range for me to feel better... The worst thing is not knowing what makes me feel ill.

  • Well, low T3 and low nutrients are quite enough to make you feel ill. And, if you have antibodies, they will play their part, too.

    Tell your doctor you refuse to accept the 'diagnosis' of fibro, you do not want it on your notes, because you don't believe that's what you have.

    Besides the way I see it, fibro is a syndrome, not a disease, and you can't 'diagnose' someone with a syndrome. It would be a non-diagnosis. It would be like 'diagnosing' someone with a sneeze, when they actually have a cold.

    The sneeze is just a symptom. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. In your case, it would be your low T3 and nutrients.

    Adrenal support is another matter altogether. It's always good to support your adrenals. They need lots of vit C. And B vitamins. And plenty of salt. And a high protein breakfast as soon as you get up. Also, I believe that glandulars, like Adrenavive, are good for adrenals. Although, I've never tried one myself.

    the-natural-choice.co.uk/Ad...

  • Oh, that's interesting, thank you. It's good to know that I can refuse this 'diagnosis' on my records. I'm afraid it's going to be an excuse to do nothing. Can a doctor put a note in my records that I don't know about but other doctors can see, for example 'she refused my diagnosis of fibro'

    With regards to adrenal support, do you mean that supporting adrenals is always good, even if I don't really know if there is any problem there? I had blood cortisol done which was ok, I can't afford at the moment to do saliva cortisol+DHEA, but it will be next on my list. I didn't know if I should try something like Adrenavive without checking that my adrenals are in need of help. Fatigue can be caused by adrenal insufficiency, but then so many symptoms overlap between thyroid and adrenals. What is your opinion on adaptogen herbs? Is it something worth trying without actually having saliva cortisol tested or can it do more harm than help?

    Oh, and what's the significance of high protein breakfast for adrenals?

    Sorry for so many questions, its a great chance for me to pick your brain :)

  • I have no idea if a doctor can do that. But, I suspect, they can do a lot of things that we will never even know about!

    Arenavive is just a nutritional supplement, not a drug. I don't think it can do any harm, but if you feel it doesn't agree with you, stop taking it. When you are hypo, it often has a negative effect on your adrenals. So it's as well to look after them in any way you can.

    The high protein breakfast is because adrenals need protein. And the morning is their busiest time - getting you out of bed and ready for the day. That's when they need a helping hand.

    Adaptogens, are a very personal thing. They don't suit everybody. I know they don't suit me. And, from my reading, it appears to me that they are more useful for lowering hormone levels, than raising them. So, best leave the adaptogens alone until you know what you're dealing with. And, if you feel you need them, try them one at a time, just in case. :)

  • greygoose do you think it would be worth trying T3 then?

  • Yes, I do think it would be a good idea to lower your levo a little, and add in some T3.

  • Thank you, could you advice on how to go about it? Where do I order from and what is the smallest dose I should start from?

  • You should post another question asking members to PM you their trusted sources of T3.

    It would be best to start on a quarter tablet, 6.25 mcg, and increase in two weeks by the same amount. When you get to one tablet, hold for six weeks, and test.

  • Great, thank you. How will I know if I taken too much before it's time to test? For example, if half a tablet is already too much for me, what are the symptoms to look out for?

  • You possibly wouldn't have any symptoms - I never did when I over-dosed. But, if you're worried, lower your levo by 25 mcg when you increase the T3 to half a tablet.

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