Doctors say not hashimotos: Hiya everyone, im... - Thyroid UK

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Doctors say not hashimotos

joeblo
joeblo

Hiya everyone, im having trouble convincing my docs that they should look into my thyroid further. They only did tsh and said thats fine as in range (as they do) then i went and got some private tests done for thyroid that they wouldnt do. These are below and i went with the results to them and STILL they say nothing is wrong! So im looking so see if anyone else had similar results and was then diagnosed with hashimotos?.

TSH 3.15 range (0.27 - 4.20) my original doctors one they did was 3.21 range (0.35 - 3.5)

Free Thyroxine 15.000 range (12.0 - 22.0)

Free T3 5.11 range (3.10 - 6.80)

Thyroglobulin antibodies 550.000 range (0.00 - 115.00)

Thyroid peroxidase antibodies 12.3 range (0.00 - 34.00)

zinc 3.1 range (11.0 - 24.0) docs now put me on suppliments

vitamin d 44 range (50 - 120) docs now put me on suppliments

Cholesterol 5.4 range (3.6 - 5.0)

13 Replies
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SlowDragon
SlowDragonAdministrator

You also need B12 and folate tested especially with high TG antibodies

NHS usually won't diagnose Hashimoto's on just high TG antibodies as they can be raised for other reasons

healthline.com/health/antit...

Ferritin needs testing too

joeblo
joeblo
in reply to SlowDragon

hiya slow, my b12 is 446 (serum) range (130 - 1100) and ferritin is 106 range (23 - 300) and folate is 6.2 range (2.7 - 15.0)

also my serum billirubin (liver test) is up to 30 range (>20)

You have raised thyroglobulin autoimmune antibodies (TgAb) ie Hashimoto's disease. The NHS rarely test for TgAb but do the other TPO - perhaps your doctors are unfamiliar with TgAb! 12 years ago I had a similar cause of Hashimoto's and the endocrinologist and Gp just ignored it as they can't do anything about it- you however could consider going gluten( even dairy) free as say two month trial to see if it reduces the antibodies. In Hashimoto's the antibodies attack the thyroid gland, mistakenly believing it is 'alien'; the dead thyroid cells, along with their hormones, are dumped into the blood stream ...this results in fluctuating periodic peaks of thyroid hormones. Doctors unfortunately get confused with theses peaks as the patient seems to be hypo one week, hyper the next. Members know your TSH over 3 can create hypothyroid symptoms , unfortunately Gps tend to diagnose with a TSH of 10. You should have a TSH of 1 or under to help with your Hashimoto's. Does your doctor know that cholesterol levels decline if you are on the correct thyroid 'meds'? Good to see they are supplementing your Vit D which is deficient ( even tested for, and supplementing zinc), but have you had B12, folate and ferritin tested too? Characteristic of Hashimoto's is poor gut absorption meaning nutrients from food, drink and supplements are frequently low, yet they need, along with vit D, to be at optimal level which is in the upper part of their ranges. Hope the doctor is giving you adequate supplement doses to get your levels up, monitor them and continue a maintenance dose. Do you have any hypothyroid symptoms that doctors may be more sympathetic in treating?

thankyou for your detailled reply :) in regards to the zinc and vitamin d, the docs just told me to take something for them lol, didnt say how much or anything, so ive had to find out what to take for myself etc.

my b12 is 446 (serum) range (130 - 1100) and ferritin is 106 range (23 - 300) and folate is 6.2 range (2.7 - 15.0)

also my serum billirubin (liver test) is up to 30 range (>20)

also i was tested for serum cearuloplsmin (copper) and that was 0.22 range (0.20 - 0.60)

its so hard to convince them of anything is up with my thyroid at all, they always dismiss it and all they say is you have me/cfs etc to shut me up or so they dont have anything to treat. I have an appointment in august with the doc, so i dont know if she is going to say something about cholesterol now (as that was only done a day ago which is why she wants to see me) so i dont know if she will see the thyroid/cholesterol connection or not

Oh dear , even when deficient you doctor isn't treating you re Vit D! Your folate late and ferritin should be above halfway hru the ranges. B12 could be up to 550. I have a fibromyalgia diagnosis, which a bit like cfs/ me is a diagnosis of exclusion, to shut you up.... I'm going down the route that my hypothyroidism was always inadequately medicated. Other ailments I have had for eg bile duct/ gallstone related are also supposed to be hypothyroid related- that's when I had raised bilirubin levels. Could you ask for a 50 mcg trial of levo. on the principle it might help your various symptoms/ blood tests and get you out of their hair! Meanwhile get your Vit/ min levels better - I like the sublingual B12 and spray or drop form of VitD ( with vitK2) that due to absorption under the tongue mean they enter the blood stream quickly, bypassing compromised gut. Good luck joeblo.

i know its crazy right! i had to find a help group with a vitamin d protocol to find out how much to take to treat it etc! so thats vit d, magnesium and k2 (like you said). Im also on b12s to get that raised a bit higher, and just started taking a bit of iron to help that up too :) oh and a bit of methylfolate to go with the b12 sublinguals (methlycobalamin). Ive been on the same road as you it seems with fybro etc but mine came back negative (my mum had it and lupus, and finally cancer that she passed away from). I literally just had an ultrasound today on my liver and they found nothing, so the docs do need to find another reason for my raised billirubin too then really. Im guessing i would probably be laughed out of the room if i asked for a trial! they laughed at me when i said that the antibiotics i was on for months (tetracyclines) are the root cause of my problems and i have never felt the same since taking those! and they laughed and said they dont cause any long term affects! so of course i looked it up and funnily enough they can deplete zinc and allsorts of things!

oh yeah and i mentioned to them i have raynauds syndrome too and am hypermobile (not been diagnosed) but i rank high on the beighton score, they wont even do anything for those either (or look further into the hypermobile etc)

Getting your mins/vits sorted is the best thing to do - it's doing you good, and as its proactive is a boost to your wellbeing etc., but it can take many months. Make sure you take high enough doses of everything. From memory your bilirubin is not raised much... mine was more and turning me slightly yellowish with jaundice- my doctors seemed to be competent treating to this result, though not on TSH etc. You can't test for fibromyalgia that is why it is a diagnosis of exclusion ie tested and scanned for everything else.... but in my case not considered undertreated existing hypo etc. Ask for a trail of levo....say they've tried lots of things , you are self medicating your vits/ mins, changing diet etc...although perhaps wait abit to your body has adjusted and benefited from these changes first...often thought wiser to limit changes to one at a time.

Ugh, this sounds horribly familiar, although your levels are worse than mine. I have symptoms of hypo, and have raised tgab, and borderline low ft4. Diagnosed with fibro and cfs. Only after years of protest, they said it could be hashimoto's or graves. I don't think it's graves, but am sure its hashimoto's. It's so hard when you haven't got a dr that listens :( xx

joeblo
joeblo
in reply to Sadienerin

Hiya, do you have a high or low tsh etc? Are your antibodies quite high?

High TG or TPO antibodies = Hashimotos (but often called autoimmune thyroid disease in UK). But NHS will not treat until either TSH > 10, free T4 under range or lots of symptoms, high antibodies and TSH > 4.2, when you might get a trial of levo.

Yeah because they wait for thyroid to be damaged to then treat hypo, rather than try to prevent the eventuall hypo, and then have to treat that for life

Oh well yet another fob off from doctors, so even though everything points to thyroid, because no other problems can be found, STILL all they can say is tsh is in range and antibodies dont mean a thing!! She said they want to ban the antibodies test because anyone can have high levels and be fine. Their ignorance is really getting to me now, even saying my vitamin d was low just because of the time of year and that it will go up now *sigh* they just wont see that thyroid,cholesterol,zinc,vitamin d are all connected and i have problems with all.

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