Confusing results: Having complained to my GP... - Thyroid UK

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Confusing results

59Blue profile image
15 Replies

Having complained to my GP about lowering my dose and poor blood tests from a private sample I was sent for another test.

Since the first test in November I have been taking Vit D with VitK and Magnesium, vitamin B12 and Folate. Could this have made so much difference?

I feel a little better than in December but still more tired and fuzzy brained than before my dose reduction. He didn’t repeat my cholesterol sadly. My constipation is better because I’m obsessive about eating fibre, drinking fluids and walking. Hair loss and dry skin seems to have calmed down. Still have the feeling of a lump in my throat.

I’m sure he won’t increase my dose but I think I’m still under medicated. Any suggestions for my phone consultation with him?

( not the GP who reduced my dose as I’ve refused to talk to him)

50 levothyroxine and 10 liothyronine, same manufacturer.

Test on 20Jan , 8.10 am, only water and no meds for 24 hours

TSH: 2.15 mU/l (Range 0.35 - 4.94) 39.22%

FT4: 10.6 pmol/l (Range 9.01 - 19.05) 15.84%

FT3: 4 pmol/l (Range 2.64 - 5.7) 44.44%

Test on 17 Dec, 8.30, self administered, only water and no meds for 24 hours

TSH: 5.11 mU/l (Range 0.27 - 4.2) 123.16%

FT4: 13.4 pmol/l (Range 12 - 22) 14.00%

FT3: 4.14 pmol/l (Range 3.1 - 6.8) 28.11%

Test on 11 Nov, 9.00, only water, normal meds taken at 7.30

TSH: 2.32 mU/l (Range 0.27 - 4.2) 52.16%

FT4: 12.2 pmol/l (Range 12 - 22) 2.00%

FT3: 6.35 pmol/l (Range 3.1 - 6.8) 87.84%

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59Blue
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15 Replies
59Blue profile image
59Blue

In a state of shockTelephone conversation with a different GP. He asked how I felt - I said I felt as if I had aged 10 years in the last 6 months. He said I’ve reviewed your notes inc the email complaint, and he thought a dose increase to 75 was reasonable. ‘After all you know how you feel’

Prescription written to add the 25 now and added to my repeat prescription for the future. He suggested a repeat blood test in 6 months which I happily agreed to.

There is hope for the medical profession

shaws profile image
shawsAdministrator in reply to59Blue

That's good news as the GP seems to be knowledgeable.

If you are still symptomatic after taking your new dose for several months, make an earlier appointment.

If you've not had B12, Vit D, iron, ferritin and folate tested ask for these too.

59Blue profile image
59Blue in reply toshaws

Iron and ferritin were tested this time and are good - always have been. Vitamins I arranged through Medicheck and following their advice to supplement as they are low. Planning to repeat in March/ April. As this new GP is approachable I will discuss with him then.

SlowDragon profile image
SlowDragonAdministrator in reply to59Blue

Previous vitamin results

B12 56.5 range 37 - 188

Folate 2.6 range 3.89 - 19.45

Vit D 50 range 50 - 200

Remember to stop taking vitamin B complex in the week before all blood tests as biotin can falsely affect test results

Exactly What vitamin supplements are you currently taking?

59Blue profile image
59Blue in reply toSlowDragon

BetterYou VitD spray with VitK - before evening mealBetterYou Vitamin B12 oral spray previously oral Vit B12 from Boots - mid day

Folic Acid Boots - haven’t yet found a Folate option. - midday

From reading previous posts thought it best to take the individual ones rather than a B complex

Magnesium oil at night

Does this seem reasonable? No biotin so didn’t stop them prior to my blood tests

SlowDragon profile image
SlowDragonAdministrator in reply to59Blue

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial than just folate. This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

Jarrow also make separate folate…rather than folic acid

B vitamins best taken in morning with or immediately after breakfast

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

59Blue profile image
59Blue in reply toSlowDragon

Helpful, thanks. I’ll finish the ones I have and move to vitamin B complex

shaws profile image
shawsAdministrator in reply to59Blue

I would double-check with GP that you don't have Pernicious Anaemia - If you were you'd have to have regular B12 injections. The following extract might be helpful:-

General Discussion

Pernicious anemia is a rare blood disorder characterized by the inability of the body to properly utilize vitamin B12, which is essential for the development of red blood cells. Most cases result from the lack of the gastric protein known as intrinsic factor, without which vitamin B12 cannot be absorbed.

The symptoms of pernicious anemia may include weakness, fatigue, an upset stomach, an abnormally rapid heartbeat (tachycardia), and/or chest pains. Recurring episodes of anemia (megaloblastic) and an abnormal yellow coloration of the skin (jaundice) are also common. Pernicious anemia is thought to be an autoimmune disorder, and certain people may have a genetic predisposition to this disorder.

There is a rare congenital form of pernicious anemia in which babies are born lacking the ability to produce effective intrinsic factor. There is also a juvenile form of the disease, but pernicious anemia typically does not appear before the age of 30. The onset of the disease is slow and may span decades. When the disease goes undiagnosed and untreated for a long period of time, it may lead to neurological complications. Nerve cells and blood cells need vitamin B12 to function properly.

My mother had P.A. and I also have it.

My mother died due to her GP telling her she needed no more B12 injections as her blood test was fine. After a few years of no injections she developed stomach cancer and both my sister and myself had thought that the GPs comment had been 'good' but there was no internet connection to check doctor's decision.

The following is an extract:

"General Discussion

Pernicious anemia is a rare blood disorder characterized by the inability of the body to properly utilize vitamin B12, which is essential for the development of red blood cells. Most cases result from the lack of the gastric protein known as intrinsic factor, without which vitamin B12 cannot be absorbed.

The symptoms of pernicious anemia may include weakness, fatigue, an upset stomach, an abnormally rapid heartbeat (tachycardia), and/or chest pains. Recurring episodes of anemia (megaloblastic) and an abnormal yellow coloration of the skin (jaundice) are also common. Pernicious anemia is thought to be an autoimmune disorder, and certain people may have a genetic predisposition to this disorder.

There is a rare congenital form of pernicious anemia in which babies are born lacking the ability to produce effective intrinsic factor. There is also a juvenile form of the disease, but pernicious anemia typically does not appear before the age of 30. The onset of the disease is slow and may span decades. When the disease goes undiagnosed and untreated for a long period of time, it may lead to neurological complications. Nerve cells and blood cells need vitamin B12 to function properly.

rarediseases.org/rare-disea...

59Blue profile image
59Blue in reply toshaws

Useful information. I’ll talk to my GP next time

SeasideSusie profile image
SeasideSusieRemembering

59Blue

50 levothyroxine and 10 liothyronine, same manufacturer.

Test on 17 Dec, 8.30, self administered, only water and no meds for 24 hours

To get an accurate measure of your thyroid hormones, we should take last dose of Levo 24 hours before test and last dose of T3 8-12 hours before test (splitting T3 into 2 doses the day before and adjusting time so last dose is within the time gap before the test).

You can see the difference in your FT3 level from the 2 tests above, the test where you took your morning T3 showed FT3 very close to top of range reflecting the fact that you took T3 before the test. The test where you left 24 hours shows a very low FT3 because you left so long between last dose and test. Leaving 8-12 hours will give the normal circulating hormone without a spike from taking your T3 close to the test or a false low from leaving too long since last dose.

59Blue profile image
59Blue in reply toSeasideSusie

I’ll do that next time

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking

Is T3 prescribed by endocrinologist

Good you got dose increase in levothyroxine

Do you normally split your T3 as 2 x 5mcg approx 12 hours apart

Day before next test

Always split T3 …taking last 5mcg dose approx 8-12 hours before blood test

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

ESSENTIAL to test vitamin D twice year when supplementing

Test folate, ferritin and B12 at least annually

Do you have autoimmune thyroid disease, also called Hashimoto’s

Have you had coeliac blood test done

Are you on strictly gluten free diet

59Blue profile image
59Blue in reply toSlowDragon

Levothyroxine is Mercury Pharma. My pharmacist is great and knows I don’t tolerate Teva which he gave me once. I asked him about the gastric effects. He won’t give it to me now although it’s not specified by the GP.

Realised Mercury don’t make a 25mg tablet so will ask him about giving me more 50s so I can cut in half or take in alternate days. Forgot to mention this to the GP as I was just so pleased to get agreement on the dose but I can request in my next prescription renewal.

I don’t split the T3. It was prescribed by an endocrinologist who thought I as slow to start converting T4 in a morning as that is the time I was struggling. Seemed to do the trick so I continued with once a day dosing and never thought about splitting it. I will do so before the next test but he suggested morning dosing rather than evening so it didn’t affect sleep.

GP tests ferritin annually and always has done. Never been low. I will test VitD after 6 months and was planning to test folate and B12 at the same time with a Medicheck test.

When I was diagnosed with a TSH of over 100 I had a whole battery of tests during a day in hospital, adrenal function, scans and all sorts. It was following a bad adverse reaction to diclofenac which he believed damaged the thyroid as it was a sudden onset. Thyroid antibodies have always been low when tested so don’t believe it’s Hashimotos.

Never had a coeliac blood test done and don’t follow a gluten free diet. I did consider it a couple of years ago but found cutting out palm oil has eliminated any gastric symptoms. I study the ingredients on any manufactured food carefully.

SlowDragon profile image
SlowDragonAdministrator in reply to59Blue

Mercury Pharma (Advanz) make 25mcg, 50mcg and 100mcg tablets

Also boxed as Eltroxin

59Blue profile image
59Blue in reply toSlowDragon

Great news - thank you.This site is so helpful

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