Confused, please help!

[Elephantmad]

Hi guys I'm new here and desperate for advice. I've been suffering from Hypothyroidism symptoms for 12 years but only in the last few have i realised what it is ( i think, although gp refuses to acknowledge this which makes me question myself).

My TSH level has been between 3.1 and 5.8 for the 12 years and I'm currently at 4.8, lab range is 0.34- 4.94. I'm highly symptomatic and right now my hands and wrists are so painful I'm having to wear support bandages ( I'm 37)!

I'm confused about my antibody ranges. I tested positive ( no range) for ANA antibodies last year but gp wrote it off and now I've tested negative for TPO antibodies but my Tg autoantibodies is 6.3 ug/l , I think the test is needing to be <0.9 but I'm not sure as the measures seem different everywhere.

If this is positive for Tg antibodies it's still really low right?

Any advice greatly appreciated

Xxx

[greygoose]

Did your doctor test Tg antibodies? That's very unusual. But, yes, ranges do vary, and we have to use the range used by the lab that analysed our blood, because the range is fixed by the machine they use.

One negative test for TPO antibodies doesn't mean you don't have Hashi's, because antibodies fluctuate. So, you would need at least three tests, and even then…

Did your doctor test for FT4 and FT3? Or just TSH? The TSH on its own tells you ver little - although yours is saying hypo, because you're hypo when your TSH gets to 3. But, doctors refuse to accept that - probably because it would mean they'd have to diagnose a lot more people with hypo! And they hate diagnosing it. But, it is possible to have a low TSH with low FT4/3, which would mean you have what is called Central Hypo. So, we should always have all three tests done at the same time.

Tg antibodies are ambiguous. Could be Hashi's, but can also be high for other reasons - unless it's very high, and then it's Hashi's. But, we can't tell about your result without knowing the range used by your lab.

[Elephantmad in reply to greygoose]

Thank you for the reply! The Tg result said 6.3 but the range column just said null. The TPO range column said null too but result column said negative.

My T3 wasn't tested but my FT4 was 12.8 with a range of 9-19. My ferritin level was 18 and the level was 10- 204.

It's so confusing and I know my Gp will just say it's all normal!

I feel so lousy.

X

[greygoose in reply to Elephantmad]

That is frustrating to say the least! What is the point of giving results without ranges? As I said, you can't just pick a range on internet and use that, because they vary from lab to lab. But, if they say negative, I suppose we have to take them at their word. As I said, one negative result doesn't prove anything, you can even have Hashi's without ever having high antibodies.

Your FT4 was quite low, but even so, difficult to say anything much without seeing the FT3. Unfortunately, doctors don't understand the importance of the FT3.

Your ferritin is much too low. So low, in fact, that your doctor should be doing a full iron panel to know more. Optimal for ferritin is about mid-range, so you're a long way off that! But, as it's in range, your doctor probably will say 'all normal', he doesn't know any better because they don't do nutrition in med school. So, you might have to insist on some action, there. But such a low ferritin must be making you feel bad.

[Elephantmad in reply to greygoose]

Thank you for your help. I will make another appointment with GP and try and argue everything once again. Wish me luck x

[greygoose in reply to Elephantmad]

Good luck!

[Elephantmad in reply to greygoose]

Remembered something, my last Tg antibody test said simply <0.9. That was last year. Could that be the range? They test no further as less than 0.9 means it's fine?

Mine this time was 6.3. Wish my doctor was knowledgeable 😊. I was also positive for anti nuclear antibodies but i didnt think this was anything to do with thyroid?

[greygoose in reply to Elephantmad]

Yes, that looks like a range - a very low range, but still a range. So, if it was the same lab, with the same range, and yours was 6.3, then it was positive.

ANA is a test to see if you have an autoimmune disease of any sort, but doesn't tell you which one you have. It certainly could be autoimmune thyroid disease, yes.

[Elephantmad in reply to greygoose]

Thank you, you have been so helpful x

[Trufflebuggy in reply to greygoose]

in regard to lab ranges, as thyroglobulin and its antibodies are used to assess and monitor patients post thyroidectomy many labs will not quote ranges as trends of thyroglobulin reducing and staying low is what the clinician is looking for hopefully ending up with a undetectable/low level because of the removed thyroid tissue. The autoantibody thyroglobulin is also measured as some patients have raised levels which interfere with the thyroglobulin test and can give a falsely low or high result, and are then referred for measurement by RIA to confirm trend of thyroglobulin... I guess what I'm saying is most nhs labs use this a monitoring test hence no ranges, as they are not looking to diagnose Hastimotos. just to monitor trends and look for sudden increases indicative to tissue regrowth and this is what they offer the test for.

[Elephantmad in reply to Trufflebuggy]

Thank you. So do you think my increase something to look into or is this test a bit pointless as ibe obviously had no surgery?

X

[Trufflebuggy in reply to Elephantmad]

there in lies the problem if the lab is using it as a monitoring test, no ranges are given so how high is high? As was previously said get TPO etc repeated several times to see.

[MaisieGray in reply to Trufflebuggy]

Trufflebuggy It isn't the lab that's using the test, it is the Dr, and unless a patient has had thyroid surgery, the issue you mention is not at all relevant to their situation. Hence directional shift isn't the key factor, but definitive measurement, and the reference interval or limit, should be provided in order that the result can be judged indicative or not, of a problem. An elevated or depressed result should always be given consideration even if no action is required, and a range or limit, as appropriate, is necessary for that.

[greygoose in reply to Trufflebuggy]

True, but none of that applies here. Therefore there should be a range.

[Trufflebuggy in reply to greygoose]

I was answering why there was no range and why. The nhs uses it usually for that specific monitoring process, relying on TPO antibodies for Hastimotos. I'm not saying they're right or wrong but that is the situation.

[greygoose in reply to Trufflebuggy]

Strange. Here in France they automatically do TSH, FT4, FT3, TPOab and TgAB for diagnosis. With a range for the TgAB. Of course, once you start taking levo, they want to just test the TSH! But, that's another story.

[Angel_of_the_North in reply to Trufflebuggy]

Some ranges are given as just < or > perhaps the OP didn't recognise it.

[Muffy]

Just out of interest, do you know what time of day your blood was drawn? It should always be at roughly the same time and around 8/8.30, preferably no later than nine. TSH is at its highest early in the morning.

[Elephantmad in reply to Muffy]

It was 9.40, earliest appt I could get x

[HashiFedUp]

I would ask for a referral to an endocrinologist and leave everything to them. GP’s have certain limitations when it comes to treating hypothyroidism. You need to find out whether you have Hastimotos disease. With this disease your tendons can be attacked (healthy cells) which causes a lot of muscle and joint pain. I have this all over my body and exercise to manage it. Ask for a referral. Actually don’t ask, request it!

[Hermits]

You sound like me. I had awful pain in my hands and feet, brain fog and other symtems. I decided to take NDT , I use Erfa from Canada . All my symptoms went away after only a few weeks. I have a TSH 0.5 I cannot cope with day life if it is any higher. I have a private Dr. That prescribes Erfa for me, it is expensive. I have my life back. Good luck

[RockyPath]

The important point here is that if you have full-blown hypothyroidism symptoms (you didn’t detail a wide assortment of them, but what you did mention is persuasive), then how do you make your case for a diagnosis and treatment? Or where do you go next for access to NDT for treating yourself?

I’m in the US so I have an entirely different system of healthcare, but it seems you have certain legal rights to receive a proper response ( diagnosis and treatment) from some doctor, even if it’s not your clueless gp.

There’s an administrator who will offer up all of the links showing you this.

Persevere, and don’t doubt your symptoms. They are the truest indication of your thyroid sickness. When treatment is successful you will feel well again.

[Gingersnap202]

GP's are, sadly, not up to date on how to properly treat hypothyroidism. ... They have been taught that "The numbers tell the story". That is not always the case. Bloodtests can tell them the amount of thyroid hormone in the blood, but it doesn't tell them how much is being taken up by the thyroid receptor sites and into the cells. ........ I am thyroid hormone resistant.......... What's in my blood doesn't mean a thing........ Most doctors were taught in Med School that Thyroid Hormone Resistance is rare. It is not. .... You can probably find a book titled "Hypothyroidism Type Two" by Dr. Mark Starr, on Amazon.com ... What he calls "Hypothyroid Type 2" is just Thyroid Hormone Resistance re-named! ... The book has a lot of good general information about Hypothyroidism and is well worth the small amount you will pay on Amazon. .....Best Wishes to you.

[KatScorpio]

Only holistic community treats hashimotos (had 35 years) and that is only with diet and lifestyle. Levo treats thyroid not hashis. Nothing medical for hashis other than writing it off as nothing when it affected everything in my life. Start on a anti-inflammatory diet and read all you can about changing basically everything you eat and it may not matter whether they diagnose you or not with a disease as can try to put it and keep it remission. Either way you will be healthier for doing it

——Zero Grain, Zero Corn, Zero Milk girl