Help with latest results, please: Still no help... - Thyroid UK

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Help with latest results, please

Horsey07 profile image
15 Replies

Still no help from my GP so I’m done with asking now. If anyone here could take a look at my latest test results on 50mcg Levothyroxine I’d be very grateful.

TSH 1.01 (0.27-4.2)

FT3 4.72 (3.1-6.8)

FT4 18.1 (12-22)

B12 - active 55.6 (37.5-188) this is despite supplementing for several weeks, although I did stop taking all supplements two weeks prior to testing. All tests were done very early in the morning and fasting. Unfortunately I’m struggling to get finger prick samples, my blood clots extremely rapidly, and the other tests I paid for all failed.

I’m having a great deal of pain in my joints, hands, and feet, my weight is still going up despite dieting and a lot of walking, my skin is dry and itchy, and my hair is thinning. Any recommendations would be appreciated.

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Horsey07
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15 Replies
greygoose profile image
greygoose

Stop dieting! Your conversion is poor, and that could be due to low calorie intake. You need calories to convert, so low-calorie diets are never recommended for hypos. And, if your weight-gain is water-weight, dieting won't help, anyway. What you need is a higher level of FT3. :)

SlowDragon profile image
SlowDragonAdministrator

Ask GP to test vitamin D, folate, ferritin and B12

Hairloss is frequently linked to low iron/ferritin

Blood clotting

Perhaps ask for referral to testing for APS

nhs.uk/conditions/antiphosp...

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

Your vegetarian so it’s especially important to regularly retest iron/ferritin and B12

Are you taking daily B complex and separate B12

Hashimoto’s

Have you had coeliac blood test done

Are you on strictly gluten free diet

Horsey07 profile image
Horsey07 in reply to SlowDragon

My GP tested for coeliac, and I’m not gluten intolerant, I found no difference when I trialled strictly gluten free, but consume very little now. I had arranged a full thyroid test, including ferritin, folate, B12, D, and antibodies, but most of the test failed due to problems with collection from a finger prick test. I was taking B12 and B complex along with D3, K2, C, selenium, magnesium, and boron prior to testing, I stopped shortly before the test.

SlowDragon profile image
SlowDragonAdministrator in reply to Horsey07

You need to stop vitamin B complex 5-7 days before test as contains biotin

Sticky blood (APS) is more common with other autoimmune disease

GP should be testing all vitamins as you have Hashimoto’s and are vegetarian

Horsey07 profile image
Horsey07 in reply to SlowDragon

Thank you, SlowDragon, my GP seems to be under the impression that I’m making a fuss about nothing, I can’t even get an appointment to see her. I stopped taking all supplements 7 days before my tests to avoid skewing the results.

SlowDragon profile image
SlowDragonAdministrator in reply to Horsey07

See/request consultation with different GP

Or redo private tests paying for private blood draw

Likely low vitamin levels

You’re currently left of ludicrously low dose levothyroxine.

Levothyroxine doesn’t top up failing thyroid, it replaces it

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

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

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Horsey07 profile image
Horsey07 in reply to SlowDragon

Thank you, again. I actually paid to have a blood draw at home, only to be told three weeks later that there are no nurses in my area! I have increased my Levothyroxine to 75mcg, and am feeling much better, although the weight gain and dry skin are extremely distressing. I’m going to write to the GP and I’ll include the NICE guidelines. Perhaps that will do the trick. If I’m honest I have absolutely no faith in GPs now.

SlowDragon profile image
SlowDragonAdministrator in reply to Horsey07

So you will need bloods retested after 6-8 weeks

Make sure you get same brand levothyroxine at each prescription

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

shaws profile image
shawsAdministrator

Before you supplemented with B12, did your GP do a test to confirm or not whether you have pernicious anaemia? Once we have one autoimmune disease, we can develop others. I now have several autoimmune conditions.

This is an excerpt from the following link:-

"Signs and Symptoms of Anemia

The most common symptom of all types of anemia is fatigue (tiredness). Fatigue occurs because your body doesn’t have enough red blood cells to carry oxygen to its various parts.

A low red blood cell count also can cause shortness of breath, dizziness, headache, coldness in your hands and feet, pale or yellowish skin, and chest pain.

A lack of red blood cells also means that your heart has to work harder to move oxygen-rich blood through your body. This can lead to irregular heartbeats called arrhythmias (ah-RITH-me-ahs), heart murmur, an enlarged heart, or even heart failure.

Signs and Symptoms of Vitamin B12 Deficiency

Vitamin B12 deficiency may lead to nerve damage. This can cause tingling and numbness in your hands and feet, muscle weakness, and loss of reflexes. You also may feel unsteady, lose your balance, and have trouble walking. Vitamin B12 deficiency can cause weakened bones and may lead to hip fractures.

Severe vitamin B12 deficiency can cause neurological problems, such as confusion, dementia, depression, and memory loss.

Other symptoms of vitamin B12 deficiency involve the digestive tract. These symptoms include nausea (feeling sick to your stomach) and vomiting, heartburn, abdominal bloating and gas, constipation or diarrhea, loss of appetite, and weight loss. An enlarged liver is another symptom.

A smooth, thick, red tongue also is a sign of vitamin B12 deficiency and pernicious anemia.

Infants who have vitamin B12 deficiency may have poor reflexes or unusual movements, such as face tremors. They may have trouble feeding due to tongue and throat problems. They also may be irritable. If vitamin B12 deficiency isn't treated, these infants may have permanent growth problems.

nhlbi.nih.gov/health-topics...

Horsey07 profile image
Horsey07 in reply to shaws

Unfortunately, getting my GP to do anything at all is a real mission. I’ve managed two five minute phone calls in the last few months. One GP did order a lot of tests, which all came back marked ‘normal’ although several were very low in range. I already have Hashimoto’s and rheumatoid arthritis so I’m quite worried now. My mother had an enlarged heart, hyperglycaemia, and a number of strokes. I have a number of the symptoms you’ve very kindly listed for me: cold hands and feet, breathlessness, irregular heartbeat, tingling sensation, I walk with a stick due to weak legs, (I also have spastic paraplegia).

shaws profile image
shawsAdministrator in reply to Horsey07

First. I am very sorry you are having a difficult time with your health and clinical symptoms.

My husband has R.A. my sister also had it and my daughter has been diagnosed with it and she also has hypothyroidism, although I believe she had R,A. at an extremely young age but not one doctor/specialist ever diagnosed her. We saw many doctors in various hospitals in London from the age of 4.

Husband 's health is controlled with his medication and he swims daily.

Daughter is now severely disabled and is at the moment in Oxford and the 'engineers' are fitting screw(?) in foot/ankle that may assist with standing/walking.

If you have a doctor that will help stabilise your hypothyroidism I think you will feel a lot better. I couldn't improve at all on levothyroxine but am fine on liothyronine (T3) but was fortunate to have it reinstated.

The aim, once we're on thyroid hormones, is a TSH of around 1 and with both Free T4 and Free T3 towards the upper part of the ranges.

Horsey07 profile image
Horsey07 in reply to shaws

Your poor daughter, I’m so sorry to hear of her struggle. RA is incredibly painful. I was lucky that it didn’t develop until I was 50 and had a brilliant GP at the time who diagnosed it immediately. I assume she’s at the orthopaedic hospital? I’m under the care of the enablement centre on the same site. I hope her op goes well.

Charlie-Farley profile image
Charlie-Farley in reply to Horsey07

Good advice here but beware “normal” blood test results. It’s where you sit in the range that is important, not just the fact you are in range. Poor interpretation understanding on behalf of your Doctor 🙄

See Ping-pong analogy 😊👍

shaws profile image
shawsAdministrator in reply to Horsey07

Thanks.

🙂

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