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Autoimmune disease

Mn review on thyroid results

34 replies

Imnotacelebgetmeouttahere · 02/08/2018 12:39

Just had some thyroid results back vis a private gp who has said she cannot treat on results as within normal range but given my symptoms the consultant at CFS clinic may... but if in normal range is it pointless me even asking?

TSH 2.57
Free T4 13.4

Other results were ok other than low vit d and ferritin ( already on supplements)
Thabk you Smile

OP posts:
Imnotacelebgetmeouttahere · 02/08/2018 13:03

Last September tsh was 2.12

OP posts:
RightYesButNo · 02/08/2018 13:08

(THIS IS NOT OFFICIAL MEDICAL ADVICE.)

It’s definitely not pointless.

Normal free T4 goes up to 11ish (labs vary) and yours is 13.4. Your TSH is normal range at both 2.12 and 2.57, but if your free T4 is high and you have other symptoms, then something is still going on (I assume you had these tests because you have other symptoms).

Your free T4 is your pituitary gland sending signals to your thyroid. If your thyroid was functioning normally, this number would be normal. But as it isn’t, it means that somehow your thyroid isn’t getting the message to make the right amount of hormones, so your T4 is the pituitary gland sending more and more messages. (At least, this is how it’s always been explained to me). So, your symptoms should include, at bare minimum, exhaustion probably?

Some conditions with high free T4 include thyroiditis, consuming too much iodine, and Graves’ disease. Maybe check the symptoms for thyroiditis and Graves’ disease and see if either line up with any other symptoms you have?

If you were suspecting hypothyroidism (commonly what thyroid tests are for), though, it is most likely not that as it would cause low free T4. However, I know it can be confusing as both too much or too little can cause exhaustion and feelings of unwellness.

Good luck, as I’m sure this is frustrating so have these Flowers and I hope you feel better soon.

NaToth · 02/08/2018 13:08

Do you have the reference ranges?

TSH is within the reference range, which means nothing, but FT4 may be low in range.

Do you have a diagnosis of CFS?

NaToth · 02/08/2018 13:12

Ranges for FT4 vary from lab to lab, depending on the equipment used.

Medichecks use a range of 12-22, in which case yours at 13.4 would be very low. My NHS range is 9-26, in which case yours would be moderately low. I've also seen a reference range of something like 7-14, in which case yours would be high. This is why it is impossible to interpret results without the reference ranges.

Imnotacelebgetmeouttahere · 02/08/2018 13:23

Sorry results and reference ranges are:

TSH 2.57 ( 0.27-4.2)
Free t4 13.4 (12-22)

OP posts:
Imnotacelebgetmeouttahere · 02/08/2018 13:25

Yes i have a cfs diagnosis..but was wondering if it was accurate.

Synptoms:

Fatigue / exhaustion

Cold mostly but also night sweats

So overweight and really struggle even when calorie controlled

Mass hair thinning ans loss

Weak brittle nails

Extremely heavy periods ( medicated for those now)

OP posts:
Imnotacelebgetmeouttahere · 02/08/2018 13:40

If relevant:

Active b12 44 ( 25.1-165.0)
Red cell folate 387 (285.4-1474.7)

OP posts:
RightYesButNo · 02/08/2018 14:07

(NOT OFFICIAL MEDICAL ADVICE).

Ah, missed the CFS mention. Apologies.

Hmm. Your B12 and red cell folate are both on the low end of normalcy but they ARE normal. However, people have different “correct levels,” being low in iron or certain B vitamins can cause fatigue and, unfortunately, weak nails. Specifically, supplementing with B7 (sometimes called biotin?) might help while trying to figure out the larger picture, but check with your doctor first.

You mention heavy periods. Have you been checked for polycystic ovarian syndrome (PCOS)? I ask because it can cause heavy periods, weight gain, trouble losing weight, and you’re three times more likely to suffer from a certain form of thyroiditis (Hashimoto’s - can also cause weight gain and those with it may often feel cold). If you’ve had an investigation for PCOS and it was negative, I still might ask to have your estradiol and progesterone levels checked. At abnormal levels, and combined with an abnormal thyroid level, these could cause some of the problems you mention - specially low progesterone with normal estradiol.

@NaToth very rightly pointed out that she has seen a system where the normal values are 12-22. I’m used to a system where the max is 11ish (I think 11.2). It’s true many of your symptoms may line up more with being low in T4 than too high, so we would need to know the reference ranges of your labs to be sure. But knowing your symptoms, the above mentioned (PCOS, Hashimoto’s thyroiditis) might be possibilities.

Imnotacelebgetmeouttahere · 02/08/2018 14:16

My nhs gp has been very vague with regsrds to pcos and just refers to pcos like symptoms Hmm this was when i was suffering from secondary infertility and moaned about how hairy i was Blush

I think ill ask for an endocrinologist referral...i assume thats the best way to get all this checked?

OP posts:
Imnotacelebgetmeouttahere · 02/08/2018 14:21

Just had a look at hashmitos and it pretty much lists my symptoms...obv other stuff can cause them too so i guess that's why.gp isnt interested. They see the cfs label and essentially give up!

Interestingly and likely coincidentally ive also had 4 premature babies which apparently can be linked to untreated thyroid issues.

OP posts:
RightYesButNo · 02/08/2018 14:42

I would say start with an endocrinologist or a gynae, if you have one you trust. An endocrinologist will probably be best suited to look at the entire picture, I think. I recommend before you go in, do write out a sort of list so nothing is forgotten, especially as it can be overwhelming when exhausted. Include that PCOS was briefly mentioned in the past but not investigated, hairiness, symptoms you’ve listed here, and symptoms others may have taken for granted are the CFS/ME.

The problem with CFS/ME is that sometimes some of its symptoms can mask symptoms from other conditions, so it’s very common for PCOS diagnoses, in particular, to sometimes take quite a while, if that is what you have. Good luck!

Imnotacelebgetmeouttahere · 02/08/2018 14:55

Thank you!

OP posts:
NaToth · 02/08/2018 17:05

I'd say it's almost certain you don't have CFS. You would expect FT4 in a healthy person to be in the top 25% of the reference range, whereas yours is in the bottom 15%, which is terribly low.. If FT4 is low, as yours is, FT3 will be correspondingly low and will lead to your symptoms.

You are effectively hypothyroid, but there is a disconnect with your pituitary gland, which is sluggish and not kicking out enough TSH to stimulate your thyroid into producing more thyroid hormone. In other words, you would expect your TSH to be much higher with an FT4 result as low as yours.

Like many hypothyroid people, your B12 and folate are on the low side and I wouldn't be surprised if your vitamin D and iron are also low. Ah, just read back and see that they are. How's your cholesterol?

I was very lucky in that I was able to persuade an NHS doctor to treat me when I was in exactly the same position as you, including the CFS diagnosis, and thyroid replacement has changed my life. You may not be so lucky because of their ridiculous rule that they won't treat until TSH reaches 10, which yours may never do.

I would suggest you join the Thyroid Patient Advocacy forum (Google them). There is a fantastic amount of advice there for the more unusual case and it might save you, as it saved me, from getting dumped in the CFS bucket and offered no treatment or support.

Have you had glandular fever in the past?

Imnotacelebgetmeouttahere · 02/08/2018 18:14

Wow! Thank you for that...no glandular fever in past just presumed swine flu that was treated with tamiflu.

Cholesterol is raised slightly at 5.4 ...is that linked or just because im overweightBlush

OP posts:
NaToth · 02/08/2018 20:14

I'd say it's all connected. You seem to me to be presenting classic hypothyroidism; low thyroid hormones, low vitamins and minerals and raised cholesterol. The only problem you have is that your TSH is only rising slowly and may never reach UK's ludicrous threshold for treatment.

If you are going to get well you will need help outside the mainstream, hence the website I mentioned earlier, unless your GP or consultant is prepared to consider secondary hypothyroidism, which it's worth looking at, but I'm not sure you're on all fours with a typical profile for that.

Imnotacelebgetmeouttahere · 02/08/2018 20:32

I am prob going to pay for a private endo appointment ..figure its worth knowing for sure before i continue to be told this is just how im going to feel from now on Sad

OP posts:
NerdyBird · 02/08/2018 22:47

I have similar tsh and free t4 levels, struggled to understand whether t4 high or low as Medichecks uses a range others don't. But in relation to iron levels, the dr I saw said she considers mine to be low at 35 even though it's 'normal' and that dermatologists she knows recommend 70-90. I'm trying to bump mine up.

NaToth · 03/08/2018 12:16

@NerdyBird The reference ranges differ from lab to lab because of the equipment used, which is why it's difficult to interpret results without the reference ranges. Your GP surgery or hospital should give ranges with results and if they don't, they should be asked to provide them, although often pathology handbooks are online and you can find the information yourself.

The secret to interpretation is where in the range you fall.

The received wisdom is that ferritin should be 70-90, or halfway through the reference range. That level should be high enough to stop hair falling out and enable T4/T3 conversion.

Imnotacelebgetmeouttahere · 03/08/2018 13:50

Ferritin at 15 isbt helping then Grin

OP posts:
Imnotacelebgetmeouttahere · 03/08/2018 14:55

Whilst im waiting...is it worth getting a medichecks test on t4, t3 and antibodies so i have an idea of those too?

OP posts:
9amTrain · 04/08/2018 19:39

I'd definitely get a full thyroid panel done to include TSH, FT3, FT4 and antibodies.

B12, folate, ferritin and vitamin D should all be optimal levels too. Upper third of the reference range.

Have you had an early morning cortisol test? Coeliac test? Sleep study?

I'm going through hell trying to find out why I've been permanently tired for almost 10 years and have recently had a private sleep screening done which scored high for apnea, so now I've been referred to a sleep clinic to diagnose or rule it out. I also recently started injecting B12 as it's always on the low side (as well as supplementing iron, folate and Vitamin D)

Good luck!

Imnotacelebgetmeouttahere · 09/08/2018 20:32

New medichecks resukts are in!

Tsh 3.92 ( 0.27-4.20)
Free thyroxine 11.2 ( 12-22.0)
Free t3 4.1 (3.10-6.8)
Thyroglobulin antibodies 21.700 ( 0-115)
Thyroid peroxidase 9 ( (0-34

So does this rule out thyroid issues?

OP posts:
Imnotacelebgetmeouttahere · 09/08/2018 20:33

I mean becuase of the antibody levels are ok

OP posts:
9amTrain · 11/08/2018 02:57

It doesn't rule out thyroid issues, in fact it suggests you do have issues. Your TSH alone is said to be optimal under 1.5-2 and anything above indicates your thyroid is struggling.

Your TSH is raised, despite being in range, and both of your frees are fairly low when they should be at the top of the range. Low antibodies either means they weren't raised at the time of testing (they can fluctuate) or you have (subclinical) hypothyroidism not due to hashimotos*.

*I'm not an expert, not sure of the ins and outs of hashimotos.

9amTrain · 11/08/2018 02:59

What time of day did you have the blood taken? TSH is highest in the morning and drops throughout the day.

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