Just want to check Thyroid Test Results (agains... - Thyroid UK

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Just want to check Thyroid Test Results (against Fibromyalgia diagnosis)

tresco12 profile image
26 Replies

Morning All,

I have recently been diagnosed with Fibromyalgia. I have read that sometimes this can be misdiagnosed when really the diagnosis should be Hypothyroidism. I have had various thyroid blood tests done and have put the results and the ranges below. On the face of it (and to a non expert like myself!!) it seems that my thyroid is fine.

Does anybody think that there is anything in the below results that needs further investigating? All comments/advice gratefully received!!

Thanks a lot

Thyroid Function

THYROID STIMULATING HORMONE 1.45 mIU/L Range: 0.27 - 4.20

FREE THYROXINE 15.14 pmol/L Range:12.00 - 22.00

TOTAL THYROXINE(T4) 82.2 nmol/L Range: 59.00 - 154.00

FREE T3 4.53 pmol/L Range: 3.10 - 6.80

Thyroid Antibodies

THYROGLOBULIN ANTIBODY 10.630 IU/mL Range: 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 7.26 IU/mL Range: 0.00 - 34.00

HAEMATOLOGY

Vitamins

VITAMIN B12 433 pmol/L Range: 140.00 - 724.00

FOLATE (SERUM) 8.69 ug/L Range: 3.89 - 26.80

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tresco12
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Clutter profile image
Clutter

Hi Tresco 2,

TSH, FT4 and FT3 are euthyroid (normal) and thyroid antibodies are negative for autoimmune thyroid disease (Hashimoto's). There is no indication of thyroid dysfunction.

B12 is adequate but it is apparently possible to have B12 deficiency with B12 <500 so check out the signs and symptoms link here b12deficiency.info/signs-an... If you have many of the symptoms pop over to healthunlocked.com/pasoc for advice.

Click on My Communities > +Browse Communities > and enter Fibromyalgia into the search box to find communities about fibromyalgia.

tresco12 profile image
tresco12 in reply toClutter

Thanks for your comments Clutter.

Do you have any thoughts or comments on what Ansteynomad and Silveravocado state below about the TSH being normal but FT4/FT3 being in the lower end of the ranges? -i.e. maybe subclinical hypothyroidism

Thanks

Tresco12

Clutter profile image
Clutter in reply totresco12

Tresco12,

As I said, your thyroid results are unequivocally euthyroid. I don't think FT4 and FT3 are particularly low for someone not taking Levothyroxine.

Subclinical hypothyroidism is when TSH is 4.20 - 10 with FT4 and FT3 in normal range.

Clutter profile image
Clutter in reply totresco12

Tresco12,

I don't think your symptoms are typically hypothyroid see thyroiduk.org.uk/tuk/about_...

It is possible that your fibro symptoms might improve if you took Levothyroxine or other thyroid replacement even though your results are euthyroid but your GP will almost certainly refuse to prescribe it which means you will have to buy online without prescription, self medicate and arrange your own blood tests to check you don't take too much.

There are several fibromyalgia communities on HealthUnlocked. Click on My Communities and +Browse Communities and type Fibromyalgia into the title.

tresco12 profile image
tresco12 in reply toClutter

Thanks Clutter

humanbean profile image
humanbean

You need vitamin D and iron tested as well as the tests you've already had. I have read of some people reducing the severity of fibromyalgia symptoms by optimising vitamin D. And low iron is miserable for anyone, with or without fibromyalgia.

To test these two things privately with finger prick testing :

medichecks.com/iron-tests/i...

vitamindtest.org.uk/index.html

For the iron testing, in an ideal world, you would have a full blood count done to go with it, but that would be an additional cost :

medichecks.com/haematology-...

I've also just noticed these tests : medichecks.com/health-check...

medichecks.com/tests/ferritin

medichecks.com/tests/well-m...

I'll let you do the arithmetic to decide which set of tests would do the things you need at the cheapest cost. The things you need are :

Serum iron

Ferritin

Transferrin Saturation

TIBC

vitamin D

and if you want to do a really thorough job for iron you would also need the following which are all part of a full blood count :

Haemoglobin

Haematocrit

RBC

MCV

MCH

labtestsonline.org.uk/under...

tresco12 profile image
tresco12 in reply tohumanbean

Thanks Humanbean.

A few more results are below -

Had Vitamin D2/D3 tested in December and was over 100 (over 50 was sufficient)

The below tests have been done in the last month - to my "untrained eye" everything looks ok but let me know if you have any thoughts/comments

Iron 16.3 (range 10.6 -28.3)

TIBC 68 (range 41-77)

Transferrin Saturation 24 (range 20-55)

Haemoglobin 152 (range 130-170)

MCV 99.4 (range 80-99)

MCH 31.5 (range 26-33.5)

HCT 0.480 (range 0.37-0.50)

Ferritin 97.5 (range 30 - 400)

Thanks

Tresco12

humanbean profile image
humanbean in reply totresco12

There is a page about the ideal results for iron-related tests here :

rt3-adrenals.org/Iron_test_...

Some other good iron links :

irondisorders.org/Websites/...

labtestsonline.org.uk/under...

Serum iron : Below mid-range and it needs to be a bit over mid-range.

TIBC : Being high in range suggests you need to supplement iron.

Transferrin Saturation : Too low - needs to be 35% - 45% i.e. need more iron

Ferritin (iron stores) : Mid-range is 215. Yours is 97.5. You need more iron to get it up to mid-range or slightly higher.

Haemoglobin : Doesn't look to bad.

MCV : With iron deficiency this is usually low. With low B12 it is usually high. If your B12 is too low and your iron is too low, MCV could be anything.

MCH : Can be high with low B12 and low folate.

HCT : High in range means you may have been dehydrated when the blood was taken.

In summary : You need more iron, and in your shoes I would want to raise B12 and folate.

Your iron results aren't outrageously bad, but could definitely be better. In your shoes I would suggest (if you aren't vegetarian or vegan) eating liver or black pudding once or twice a week. You could mince liver and hide it in stews and casseroles if the thought of eating it isn't appealing (don't overcook it and turn it into leather).

If you don't fancy eating liver...

Do some searches on the forum for info on :

Ferrous fumarate 210mg, ferrous sulfate (or sulphate), ferrous gluconate, ferrous bisglycinate, Gentle Iron.

The important thing to know with any iron supplement is how much pure iron it contains. You should aim for roughly 100mg pure iron in total per day, taken in divided doses. You could take more but your iron levels are not that bad and don't justify it.

It is very important that people taking iron supplements test their levels frequently because high levels are dangerous and you must avoid this.

To test privately it can be done with a finger-prick test :

medichecks.com/iron-tests/i...

Since your iron levels aren't outrageously bad you should test after 6 weeks (i.e. don't leave it longer than that because you may overdose without realising). You don't want levels which are high in range for serum iron or ferritin. Just over mid-range is fine.

For info on B12 and folate write a post and ask for advice on what to take from the Pernicious Anaemia Society community here :

healthunlocked.com/pasoc

tresco12 profile image
tresco12 in reply tohumanbean

Thanks - You are a superstar Humanbean

humanbean profile image
humanbean in reply totresco12

You're welcome. :D

Ansteynomad profile image
Ansteynomad

Clutter, do you not think that the fact that both FT4 and FT3 are in the bottom halves of their respective ranges is significant?

This poster is in the sane position as I was for a long, long time: TSH 'normal', FT4 and FT3 low in range, negative for both types of antibody.

Levothyroxine and then Thyroid S has changed my life. In my Sixties I am in better health than I have been since I had glandular fever when I was sixteen?

SilverAvocado profile image
SilverAvocado in reply toAnsteynomad

I wonder the same Ansteynomad, although I don't have the experience to comment.

If I had a friend diagnosed with Fibro or CFS I would recommend they try a short course of thyroid hormone to see if they feel any improvement, as people like Dr Lowe believe these conditions are all just hypothyroid that doesn't show up in blood tests.

But looks like Tresco12 has vitamins that are a bit on the low side already, so there is something to try in the first instance.

MrsRaven profile image
MrsRaven in reply toSilverAvocado

I was diagnosed with FMS many years ago. By treating hypothyroid the symptoms of FMS have disappeared. Coincidentally, they were identical to hypothyroid. I am inclined to believe Dr. Lowe.

SilverAvocado profile image
SilverAvocado in reply toMrsRaven

Interesting to hear, MrsRaven. I'm not quite sue which I believe, but need to look into it more. I am diagnosed with CFS, but pretty sure it's nonsense. I am now in a treatment program with others who have suffered for years, so I feel a bit patronising saying that it doesn't exist ;) I must get my reading hat on and become knowledgeable about it.

MrsRaven profile image
MrsRaven in reply toSilverAvocado

The more I read the more I think the two are either one and the same, or are linked, SA.

tresco12 profile image
tresco12 in reply toAnsteynomad

Thanks Ansteynomad,

I think I read somewhere that if I was subclinical hypo that my TSH would be a bit higher in the normal range. The TSH result seems to be in the lower end of the normal range. Not sure if this is of any significance -what do you think? As it is at the lower end of the range not sure if this would make me subclinical hyper

Interestingly when I look at the list of hypo and hyper symptoms I could pick out a few from both lists that I encounter!! Feeling cold seems to be a common hypo symptom but I'm the opposite as I have a tendency to feel warm rather than cold.

tresco12 profile image
tresco12

Thanks for the responses.

Silveravocado / Mrs Raven / Ansteynomad I'm going to list my symptoms below which do seem to be quite classic Fibro ones. I'm just wondering how these compare/ compared to yours. What I will say is that if I do have Fibro it is milder than a lot of people. Don't get me wrong it is negatively impacting my life but I can still work etc.

Symptoms:

Moderate body pains (worse in lower legs and hips. No pain in neck or back)

Sleep problems - nearly every night

Restless legs at night

TMJ jaw pains

Fatigue - this is an interesting one as I do have an element of fatigue but it is not chronic. Part of me thinks if I had true Fibro the fatigue would be much worse

Heightened sensitivity to touch - eg if I lean against a door this hurts or if I put my arms on a table that hurts. To me this seems to be a classic Fibro symptom. Not sure if this happens with Hypothyroid

Lightheaded feeling / general sense of feeling unwell

MrsRaven profile image
MrsRaven in reply totresco12

I have had all of those and more. My hearing is very sensitive, also my eyes are light sensitive, fluid retention, exhaustion, muddle headed, lumpen and no sense of balance, memory loss, I could go on; all symptoms show up when I am hypo, even just subclinical which I was diagnosed as. When my bloods are ok, the symptoms diminish, or even disappear. It feels as though a massive weight has been lifted off me.

MrsRaven profile image
MrsRaven in reply toMrsRaven

Oh and I smell things that arent there, when I'm hypo. I have read that some FMS sufferers have experienced that also.

tresco12 profile image
tresco12 in reply toMrsRaven

Thanks Mrs Raven - do you mind me asking what treatment you started? (i.e. what worked for you?)

Thanks

Tresco12

MrsRaven profile image
MrsRaven in reply totresco12

For the FMS? They put me on anti-inflammatories and immunosuppressants, which made me even more ill that I already was. I ended up with gastric and oesophageal ulcers, plus acid reflux and colitis. I put on masses of weight. After about ten years I persuaded my GP to try me with levothyroxine. Initially I was on 25mcg, but it was increased gradually over time. I ended up on 100mcg, but then the improvement stopped and he wouldn't increase it any more as my TSH was "too low". Knowing what I do now I would have asked for blood test copies. That surgery only tests TSH apparently. I became more ill, until I could barely function though I was still on the same dose. I changed surgeries (for unrelated reasons). Vitamin and mineral tests showed my levels at near rock bottom. The endo wasnt interested. On the forum's advice I supplemented and began taking liothyronine. The results were dramatic to say the least. Recently there's been a blip, when I caught a bug resulting in acute sinusitis, terrible pain and not being able to breathe. The GP gave me strong steroid spray and drops. They seem to have affected things, and I went hypo. Trying to get back to where I was, but its going to take time.

Sorry for such a long answer.

SilverAvocado profile image
SilverAvocado in reply totresco12

I think it's very hard to distinguish symptoms, because all of these conditions have the very non-specific style of symptom. Although I think 'non-specific symptoms', is itself a specific symptom, that points to something like hypothyroid /ME/Fibro.

My understanding is that Fibro is the more painful version, and that the most defining feature is these specific pressure points that you must feel pain for.

Of the symptoms you list all except for the heightened sensitivity sound very central to hypo, and the sensitivity sounds plausible. I get something similar sometimes, but not all the time. And lots of people here have symptoms that I've never had, and vice versa. You can find symptom lists for hypothyroid online quite easily. I'm sure there is one on the ThyroidUK website. The trouble is that there are a hundred or more items on it, and they're almost identical to the CFS lists :(

SilverAvocado profile image
SilverAvocado in reply toSilverAvocado

Although your list also looks like it could just as easily be vitamin deficiencies. Several of the vitamins will give sets of symptoms very similar to hypo if they're deficient.

If I were you the first thing I'd follow up would be the vitamins you're low in. Get all the good quality supplements, advice about how to do that is frequently posted here. Then go with that for 2 or 3 months and get retested to make sure your levels are improving. You may feel an enormous improvement in that time.

This is the obvious right thing to do. But where you go if that doesn't give improvement might have to be more speculative.

MrsRaven profile image
MrsRaven in reply toSilverAvocado

In the end, SilverAvocado, it seems to me its a bit of a lottery. If FMS, CFS and hypothyroid have similar symptoms, we are never really going to get a clear cut diagnosis. And with the fact that the medical profession prefers to treat the symptoms than treat the root cause with hypothyroid, and there are hundreds of crackpot theories on what causes FMS, we're doomed to suffer whichever way we go.

SilverAvocado profile image
SilverAvocado in reply toMrsRaven

Yes, I agree. CFS particularly is not so much a proper diagnosis, but something they label you with when they don't know what's wrong. But no doctor is willing to do the digging and work out what's really wrong with us.

In my situatio, I've had a thyroidectomy due to cancer. But I recently got a CFS diagnosis, which you're supposed to be eligible for if you've had unexplained fatigue for a certain number of months. Mine was considered unexplained because my thyroid panel was euthyroid! But the hormone replacement hadn't been working for me, although it does raise my blood test numbers.

Since then I've started NDT, and that has improved me a lot more, but still not as fast as it's increased my blood tests.

But obviously there is no investigation of any of that. The fact that I'm capable of having a 'normal' blood test while being mostly house bound and unable to do self-care makes me a lot more suspicious of the blood tests. They certainly don't show everything. Well, we know what they don't show - whether that hormone that's swimming around in your blood is actually getting into the cells and doing anything.

MrsRaven profile image
MrsRaven in reply toSilverAvocado

Its because the NHS is reactive rather than proactive, I think, either because theres no money or time, or both. My new GP never kicks me out of the room, always listens and is interested. But because I know he's busy I am happy to do the research and show him the results. He's good with that too, and its nice to touch base now and then with a medical profession who is at least sympathetic, even he can only offer limited help.

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