If it's not thyroid what is it?: Hello, so I am... - Thyroid UK

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If it's not thyroid what is it?

Rufty10
Rufty10

Hello, so I am starting to feel like a fraud. Please bear with me as it's a bit long: 3 months ago, after 4blood tests, the Dr finally said I have thyroid/antibody problem and prescribed 50mcg Levo. These were my results before:

c-reactive protein 10 (<5mg)

TSH 2.25, (0.35 - 5.5 mU/L)

Free T4 8.6, (7-17 pmol/L)

B12 150, (150-900ng/L)

Folate 2.7, (>3ug/L)

Thyroide peroxidase, Anti-TPO antibodies (IgG Ab) 46.2. (<9 U/ml)

Plasma viscosity 1.99 (1.5-1.72 mPa)

FSH 19,

LH 7

After 2 months on Levo my TSH has gone down to 2.19 and free T4 up to 11.3.

I posted elsewhere that I went back and asked for levo to be increased to 75 & was told she didn't want to do that as it might make me feel better! Left then but went back yesterday & told the receptionist that it needs increasing. A different Dr called me back last night and said again that he didn't want to increase it - because I don't have a thyroid problem!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (it's perimenopause, even though the symptoms are years old) Why then was I told otherwise & prescribed the Levo?? Then I asked about my viscosity - there was a sharp increase of breath & he said, 'oh yes that is a concern, much more so that thyroid. There's a note that you must get this looked at!' That test was 11th January, so if I hadn't got a print out last week I would never have known to ask. He's now going to do a full antibody screen. Could be coeliac disease or lupus. I just noticed my CRP was high too.

What do you think???

5 Replies
oldestnewest

Your vitamin B12 looks very low. Yes, it's within range but it's at the very bottom of that range. And if you are thinking coeliac then that could be another reason for not absorbing an adequate amount of B12 from your diet.

Vitamin B12 deficiency -tiredness, lethargy, brain fog, pins and needles, depression, irritability

SlowDragon
SlowDragonAdministrator

You have high TPO antibodies- that confirms you have Hashimoto's (GP will call it autoimmune thyroid disease and dismiss the antibodies as irrelevant)

You need vitamin D, and ferritin tested too

Your Folate is below range and B12 very low

Do you have low B12 symptoms

b12deficiency.info/signs-an...

GP should test for Pernicious Anaemia before starting B12 injections, folic acid supplements should not be started until 48 hours after first B12 injection

If they won't offer B12 injections you may need to self supplement good quality daily vitamin B complex plus sublingual B12.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

You almost certainly need to have 25mcg dose increase in Levothyroxine.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

I specifically asked if I have Hashi and she said 'No, you're not going to die any time soon'. I asked to increase the Levo & she said 'no, you might start feeling better and then not want to reduce the level', then another doc said yesterday that I do not have hypothyroidism at all and prob shouldn't be on the Levo at all, yet alone up it!!! Hence my confusion :(

SlowDragon
SlowDragonAdministrator in reply to Rufty10

Your GP won't call it Hashimoto's they just call it autoimmune thyroid disease or plain hypothyroidism. Very likely to completely ignore the high antibodies altogether.

You can see why there are over 85,000 members on here! Current Thyroid Treatment is absolutely terrible

Suggest you make arrangements to see a thyroid specialist. Or see a different GP

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

tukadmin@thyroiduk.org

Getting vitamin D tested through GP or NHS postal service

vitamindtest.org.uk

Improving vitamin levels likely to help increase TSH so that Levothyroxine dose is increased

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor


NHS guidelines saying standard starter dose is 50mcgs and that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

beta.nhs.uk/medicines/levot...

Only start one supplement at a time and wait at least a fortnight to assess before adding another

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

I almost said we thyroid patients are in a time warp but then hang on a minute in many ways we were better treated in the late 1800's with NDT! It's hard to believe so many medics haven't a clue when we have better access to information etc. At least my GP admits she hasn't a clue and ok'd a referral of my choice! Thank goodness for HealthUnlocked and Thyroid Uk

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