Hypo with negative antibody tests: Hi. I am new... - Thyroid UK

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Hypo with negative antibody tests

Afternoonsnoozer profile image

Hi. I am new here. With a family history of hypothyroidism and after 20+ years of symptoms and TSH borderline my symptoms this year have become significantly worse. My doctor has said my tests do not show antibodies so I don't have an auto-immune/hashis cause and to wait and do another test in 6 weeks before prescribing treatment. Latest results are as below incl antibody and T3 & T4 (TSH has increased from 4.7 in July to 5.8 Oct to 7.2 in the test below, all with max ref rage of 4.2).

If someone is hypo but not hashis how does the treatment differ? What are the other potential causes? Many thanks for reading.

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Afternoonsnoozer
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12 Replies

Hi

I'm in the same boat, your results looked very similar to mine when I was diagnosed in 2020. Although my T3 wasn't measured then. I'm surprised that with a low T4 and high TSH you haven't been started on Levothyroxine immediately. But it seems some doctors want two abnormal blood tests before they'll initiate treatment.

Autoimmune thyroid disease or Hashimotos is the most common cause of underactive thyroid by far but there are others. A diet low in iodine or conversely taking high iodine supplements can cause it. Other conditions can go hand in hand with hypo, I've got fibromyalgia and the two often go together. Women are far more prone to it and age is a factor. The older we get the more common it is.

The treatment is the same as Hashis, normally you start on 50mcg of Levothyroxine and then your bloods get tested again at 6-8 weeks and if needed the dose is increased by 25mcg to 75mcg, retest 6-8 weeks later then increased by another 25mcg if needed. This continues until you get to a dose where your levels are in range and more importantly you feel well.

Its also very important to make sure your vitamin and mineral levels are optimal as this helps thyroxine to work, like vitamin D, B complex, iron and folate.

Afternoonsnoozer profile image
Afternoonsnoozer in reply to Sparklingsunshine

Thank you so much, this is very helpful. That was my concern as expected to go on meds after latest results. My folate was tested in July and was low, Vit D in Oct also low. I am taking supplements for both. Did any of your symptoms improve after starting levothyroxine?

Sparklingsunshine profile image
Sparklingsunshine in reply to Afternoonsnoozer

Hi

Well that's a whole other story, I was fine on 50mcg, then got upped to 75mcg, in September it was increased to 100mcg then I got an itchy rash and since then have been struggling with tingling, pins and needles and itching all over. I've tried industrial strength antihistamines and had numerous doctor consults, including my GP writing for advice to the Endocrinology Dept at my local hospital.

I've come off Levothyroxine, gone back on it to see if it makes a difference. Now I'm starting to think it's neurological rather than allergic. I had a consult with my own GP yesterday and have now insisted that they screen me for other causes, like kidney, liver or neurological problems. If these are ruled out it could be a fibromyalgia flare up causing nerve problems.

The symptoms are very peculiar. If it was allergic the antihistamines should help but they aren't so I've actually got a face to face appointment with my doctor next week and am going to push for blood tests etc to see if we can get to the bottom of it.

That said though I did feel better on Levo before all this started, less fatigue, more energy, I didn't have weight gain or hair problems or stuff like that but I was feeling very cold, my sleep was poor and generally felt rubbish.

Hopefully you will see a big improvement but it won't be necessarily be quick and patience is key. You might need several dose increases before you feel like your old self.

SlowDragon profile image
SlowDragonAdministrator

(TSH has increased from 4.7 in July to 5.8 Oct to 7.2 in the test below, all with max ref rage of 4.2).

As you have had two tests with TSH over 5 and you now have BELOW RANGE Ft4 you should be started on levothyroxine

See flow chart on here

gp-update.co.uk/Latest-Upda...

Print this out and see different GP

Request they start levothyroxine

Standard starter dose of levothyroxine is 50mcg and bloods retested 6-8 weeks after each dose change or brand change in levothyroxine

Typically dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS below 2, usually will be around or under one

Typical eventful dose required is 1.6mcg levothyroxine per kilo of your weight

ESSENTIAL to also test vitamin D, folate, ferritin and B12

When hypothyroid we frequently have LOW stomach acid this leads to poor nutrient absorption and low vitamin levels as direct result

Also request ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Afternoonsnoozer profile image
Afternoonsnoozer in reply to SlowDragon

Thank you so much, really appreciate to taking the time for such a detailed, informative response and links.

Regarding stomach acid, as part of the investigations in July I was sent to a gastroenterologist who did an endoscopy, diagnosed me with reflux and I was put on Omnezrapole for 2 months - my TSH from before the Omnezrapole was 4.7, deteriorating to 7.2 last week. I have seen I think that proton pump inhibitors like Omneprazole can impact your thyroid, have you seen anything about this?

Afternoonsnoozer profile image
Afternoonsnoozer in reply to Afternoonsnoozer

Sorry Omneprazole!

Sparklingsunshine profile image
Sparklingsunshine in reply to Afternoonsnoozer

Hi

Proton pump inhibitors can cause problems with absorption of B vitamins. My son takes them for chronic reflux which he's had since he was a baby, and he's been flagged up for low folate and it can also affect the B12 absorption.

People often get reflux when there's not enough stomach acid, as well as too much. Low stomach acid can be a symptom of hypothyroid.

Sparklingsunshine profile image
Sparklingsunshine in reply to Afternoonsnoozer

Hi

There's seems a modest risk of Omeprazole affecting thyroid function. It doesn't seem to affect it directly, but Omeprazole works by lowering stomach acid and hypo patients often have that already.

Low stomach acid affects absorption of Levothyroxine, vitamins and nutrients from food. Don't take them together but try and leave a few hours in between. And don't eat or drink anything but water for an hour afterwards.

I take my Levo at night as I'm very partial to coffee and coffee affects Levo absorption. I go to the loo and keep my pills and some water by the bed. Then I take mine around 2-3am. This way I've got plenty of time before I have a morning coffee. Some people take theirs just before bedtime.

I think the most important takeaway is that with a high TSH, low T4 you've got hypothyroid and need medication now. Not in 6 weeks. I would ask your doctor for a trial of 50mcg Levo. If need be try and exaggerate your symptoms. Its wrong that they aren't treating you.

Hi

Do you have symptoms of hypothyroidism?

Afternoonsnoozer profile image
Afternoonsnoozer in reply to Sparklingsunshine

Yes, I've put on around 15kg in the last year with no significant change in diet. Terrible concentration and memory. Really tired, no energy. Poor sleep at night. I have always had a low pulse (50s usually) and low normal body temperature. Dry hair and brittle nails. This year have started getting lots of aches, pains and stiffness (the worst is in my feet, ankles and other joints but not sure if that is common with hypothyroid and could be due to lack of activity from constant tiredness), tongue feels swollen, chronic constipation...

Sparklingsunshine profile image
Sparklingsunshine in reply to Afternoonsnoozer

Hi

When I was diagnosed in 2020 I'd already had one abnormal/borderline thyroid test and was told to come back in 3 months. Of course covid was at its height in spring of that year so my bloods got pushed back to June. The repeat test was abnormal this time and I had low T4 levels.

I got a phone all with the GP and he asked about my symptoms. I told him about the fatigue, coldness,muscle aches, constipation etc and he put me on 50mcg.

I really feel if you've got symptoms and two abnormal thyroid tests you are well within your rights to ask for Levothyroxine. Could you speak to your surgery and say you feel too unwell to wait?

Miffie profile image
Miffie

TSH too high fT4 too low, no idea why the GP is holding off. Lots of hypothyroid patients do not have raised antibodies ever. I was diagnosed back in 1960 no blood tests then. By the time I was being tested I’d been diagnosed so long no one bothered. More recently I have had antibodies tested a few times always fine never raised. Granted most people have Hashimotos as a cause of hypothyroidism but not everyone. I hope he starts treating you soon.

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