Private endo not much help...: Hi all, Still not... - Thyroid UK

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Private endo not much help...

Travelling922 profile image
22 Replies

Hi all,

Still not having much luck getting to the bottom of my symptoms...Paid to see a private endo beginning of July. Sadly not on the recommended list as not available due to Covid. Endo wasn't very helpful, sat on the opposite side and the room and came nowhere near me. Took all my test results since Jan along with me. He agreed with the GP that unlikely to be my thyroid causing the symptoms.

I mentioned my total cholesterol being 5.4 (<5.0) despite being 28 years old and a healthy eater. He dismissed this with little explanation.

What do you think of my last 2 thyroid bloods? Taken at 8am fasting. No B complex for 7 days prior to bloods.

Latest bloods:

End of June

TSH 3.4 (0.3-6.0)

T4 17.8 (10.0-22.0)

July

TSH 3.8 (0.3-6.0)

T4 15.2 (10.0-22.0)

Thanks x

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Travelling922 profile image
Travelling922
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22 Replies
greygoose profile image
greygoose

Just goes to show you how useless endos are with thyroid, doesn't it. He doesn't know that you're hypo when your TSH gets to 3. He's waiting for it to go past 10! And, he doesn't know that just testing TSH and FT4 tells you very little. You also need the FT3 and antibodies.

Your cholesterol isn't very high, but your FT3 is probably low - that's where the connection lies. But, I would be very surprised if he knew that. But, you should know that cholesterol levels have nothing to do with what you eat. It's made in the liver, and the more you consume in food, the less the liever makes. The less you consume, the more the liver makes to try and maintain a constant level. But, when T3 is low, the body cannot process and eliminate cholesterol correctly, so it builds up in the blood. Nothing to worry about, though. It doesn't cause strokes or heart attacks. :)

Travelling922 profile image
Travelling922 in reply togreygoose

I felt so disheartened when I left, it was like he couldn't wait to finish the appointment. I was only in there about 15 mins at most! He totally dismissed my medichecks results and said he doesn't trust them... hence why i've had 2 lots of bloods since. None as high as the medichecks TSH of 6.7 but still high enough to cause symptoms from what I have read on here.

Not sure what to do now... Ive got a long way to go until I hit a TSH of 10 and cant imagine how awful I would feel at that point! Symptoms aside I was hoping to start a family in a year or so and am aware being hypo isn't good if left untreated... x

greygoose profile image
greygoose in reply toTravelling922

Ah, well, if you're planning to get pregnant, that gives you a lever into thyroid hormone replacement, because the TSH needs to be 2, I believe. So, you should tell your doctor that. But, read up on it first, so that he can't brush you off so easily.

Travelling922 profile image
Travelling922 in reply togreygoose

Thanks! That might have to be my next step, and hopefully if i can say i feel better on it they'll keep treating me... x

greygoose profile image
greygoose in reply toTravelling922

Hopefully, yes. :)

Batty1 profile image
Batty1 in reply toTravelling922

I feel disheartened every time I leave my Endos office this is pretty common for thyroid patients to feel disappointed with our treatment.

SlowDragon profile image
SlowDragonAdministrator

healthunlocked.com/thyroidu......

Clearly your TSH at over 6 previously and very low vitamins all strongly suggest hypothyroid...probably Hashimoto’s

20% of Hashimoto's patients never have raised antibodies

Ask GP for ultrasound scan of thyroid...or get Private scan

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Travelling922 profile image
Travelling922 in reply toSlowDragon

The endo said there was no way my medichecks result of 6.7 was accurate when the rest of my bloods have come back as 3.7,3.4 and 3.8. Mentioned by T4 being in the lower end of the range too. Kept saying it was more likely to be gastro even though i don't have gastro symptoms...

Not sure whether to hold out for more bloods in 3 months or self treat x

SlowDragon profile image
SlowDragonAdministrator in reply toTravelling922

Suggest you get scan of thyroid

Work on improving low vitamin levels

And get FULL Thyroid and vitamin testing in 2-3 months

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Zazbag profile image
Zazbag

This is honestly criminal. You are CLEARLY hypothyroid. Have you tried asking for a dose increase? I had a TSH of around 3 earlier this year and I felt awful, since then I have had TWO 25mcg dose increases and only just starting to feel normal again, and still have bad days, exercise intolerance and hair loss even though my TSH is probably below 1 now and my T4 I would guess is around 20. T3 is what matters. I had mine tested 5 weeks after the first dose increase and it was scraping along the bottom of the range, which is undoubtedly why I was feeling awful. I also discovered I have high thyroglobulin antibodies, which the NHS never tested for me, (I had a Medichecks test for my T3 and antibodies) and I found a paper which says that TG antibodies (rather than TPO) are associated with a higher incidence of symptoms/poorer quality of life. I'm taking low-dose naltrexone and really hoping this helps lower my antibodies. I'm gluten and dairy free which I think probably helps. If you aren't yet then you should look into this lifestyle adjustment.

Travelling922 profile image
Travelling922 in reply toZazbag

I've not managed to get any treatment yet! I think its going to be a case of finding an endo who is willing to look at my symptoms and not just rely on the TSH being over 10 for treatment like the last one i saw... x

Zazbag profile image
Zazbag in reply toTravelling922

Get a private thyroid antibodies test. That will tell you whether you have Hashimoto's.

Travelling922 profile image
Travelling922 in reply toZazbag

I did some private bloods with medichecks in June. Both antibodies low range then. TSH was 6.7 though which is the highest its been. Private endo wouldnt acknowledge them x

Zazbag profile image
Zazbag in reply toTravelling922

Your antibodies were normal?

Travelling922 profile image
Travelling922 in reply toZazbag

Yes antibodies came back normal x

Zazbag profile image
Zazbag in reply toTravelling922

If it is a thyroid issue and you have normal antibodies you could have secondary hypothyroidism where the problem is with the pituitary gland, but in this case I believe your TSH would be low. SlowDragon would be able to explain better than me...

Travelling922 profile image
Travelling922 in reply toZazbag

I think it was slow dragon who advised that 20% of people with hashi's don't have raised antibodies. I've come of the combined pill too just in case that makes a difference but its been 2 weeks and I don't feel any better x

SlowDragon profile image
SlowDragonAdministrator

What’s your diet like?

Vegetarian or vegan?

Good, picky, Or junk food?

gluten free and/or lactose free?

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Travelling922 profile image
Travelling922 in reply toSlowDragon

I'm not veggie or vegan. Diet has always been good. Waiting on a gastro referral for an endoscopy. Coeliac blood test came back negative but been told that doesn't mean I'm not coeliac? So keeping my diet the same until I've had the endoscopy?

I'll have serum b12, folate, iron studies and vit d retested in a couple of months along with tsh, t4 and t3?

Considering having my active b12 tested privately just to make sure thats okay? Is it worth getting allergy tested too? x

SlowDragon profile image
SlowDragonAdministrator in reply toTravelling922

If your having endoscopy that’s good

You might find my profile interesting....2 negative coeliac blood tests ...endoscopy confirmed severe gluten intolerance despite Zero gut symptoms ....Strictly gluten free diet has been astonishing improvement

Lactose intolerance can be hidden issue, or can be complication of gluten intolerance...can improve after year or so strictly gluten free

coeliac.org.uk/information-...

Travelling922 profile image
Travelling922 in reply toSlowDragon

Oh wow really? Thanks slow dragon! I'm the same, zero gut symptoms... coeliac does run in the family though. Glad i'm getting the endoscopy then! x

SlowDragon profile image
SlowDragonAdministrator in reply toTravelling922

I now realise I did have some minor symptoms for years ....slightly raised bumpy skin on elbows.....“failure to thrive “ as baby, very low birth weight despite being full term, ...psoriasis when born, this faded and returned 3 years before diagnosed as Hashimoto’s in my mid 30’s

As soon as started on levothyroxine, developed extremely itchy fluid filled blisters all over my feet (classic gluten intolerance symptom apparently) ....obviously GP was completely clueless of the connection

Extremely unwell for decades on levothyroxine.

Finally joining forum here in my mid 50’s .....realised the interconnection between low vitamins, gluten and Hashimoto’s....private endoscopy 2016

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