First blood test after diagnosis and meds

[66olives]

Hello, had a first blood check with levo, but I took it as normal. no-one said not to. GP now wants to lower dosage, which is fine. But will the fact I had not eaten for 18 hrs and I took my levo as normal make much difference?

[greygoose]

Hi 66olives, welcome to the forum.

The fact that you hadn't eaten for 18 hours probably won't make much difference at all. But taking your levo before the blood draw could make an awful lot of difference, giving a false high FT4.

How long, exactly, was the gap between your dose of levo and the blood draw?

What time of day did you have the blood draw?

How much levo are you taking?

[66olives in reply to greygoose]

About 5 hrs, so should have settled.

[greygoose in reply to 66olives]

No, I don't think so. 24 hours is the normal length of time we're advised to leave.

So, what time was the blood draw? How much levo are you taking? What were the actual results? All these details can make a difference to the answers we give.

[SeasideSusie Remembering]

66olives

Welcome to the forum.

What was the reason for not eating for 18 hours, that seems rather extreme.

When having thyroid tests we always advise

* Test no later than 9am. This is because TSH is highest early morning and lowers throughout the day. To avoid a reduction in dose of Levo, or when looking for an increase, we need the highest possible TSH.

* Nothing to eat or drink except water before the test. This is be a use certain foods can affect TSH, coffee or other caffeine containing drinks can affect TSH.

* Last dose of Levo should be 24 hours before the test. This is because if Levo is taken before the test then it will show a false high, if Levo is taken more than 24 hours before the test then it will show a false low. Leaving 24 hours gives a measure of the normal circulating amount of hormone.

What were your results? Can you post them along with their reference ranges (ranges needed as they vary from lab to lab).

GP now wants to lower dosage, which is fine.

Has your GP reduced your dose on the strength of your TSH result or your FT4 result?

Do you think you were overmedicated?

What dose were you taking and what is the new dose?

[66olives in reply to SeasideSusie]

Forgot to eat, I have got into the habit of ignoring hunger as I pile on weight really easily. Blood test so late in the day because I had to chase round where the GP had left the blood test request (sister surgery) this meant a 10 mile round trip. Then I booked the first slot available.

So this means nothing to me ... Plasma TSH level:0.08mu/L. All it says on NHS App

The original test said T4 level 6.5pmol/L (normal range 7.7 - 15.1) TSH level 19.40mu/L (normal range 0.34 - 5.6)

[SeasideSusie Remembering in reply to 66olives]

66olives

The original test said

TSH level 19.40mu/L (normal range 0.34 - 5.6)

T4 level 6.5pmol/L (normal range 7.7 - 15.1)

So you were diagnosed hypothyroid because your TSH was way over range. Primary hypothyroidism is diagnosed when TSH goes over 10 (which really does make you wonder why they have a range and don't diagnose you if you go over range but have to wait until it reaches 10!)

Also our FT4 level was below range.

TSH is a signal from the pituitary gland to tell the thyroid to make hormone when it detects there is too little. When there is no enough thyroid hormone the pituitary sends the signal and TSH rises.

FT4 is a measure of the circulating amount of thyroid hormone, yours was below range showing that you weren't making enough hormone.

Levothyroxine is a synthetic hormone identical to our own natural hormone, it is prescribed when we can't make enough thyroid hormone ourselves.

New test results:

Plasma TSH level:0.08mu/L. All it says on NHS App

Your TSH has now gone below range and this is why your GP has reduced your dose of Levo. They like to see TSH within range.

TSH is useful for diagnosing hypothyroidism; however, once on thyroid hormone replacement just testing TSH alone is inadequate because it's not a thyroid hormone (it's a pituitary hormone as mentioned above), the thyroid hormones are FT4 and FT3 and tell us what we need to know.

When on thyroid hormone replacement, it's often the case that TSH goes very low or below range but as long as FT4 and FT3 are within range that's fine. Unfortunately doctors aren't taught this, they adjust dose by looking at the TSH only which means that many hypothyroid patients are kept ill because they aren't on enough replacement hormone. It's essential to test FT4 and FT3 to get a measure of the amount of thyroid hormone.

We advise patients to refuse to reduce their dose unless the GP tests the FT4 and FT3. Some will test TSH and FT4 but it's rare that FT3 is tested but it's the FT3 that is the most important test, it's the one that tells us if we are overmedicated (over range FT3 = overmedicated).

We should retest 6-8 weeks after any dose change to check our levels, it can take that long for levels to settle after a dose change.

If you do reduce your dose as your GP has advised, do make sure that you are retested in a few weeks and ask for full testing, see how you feel, post results and reference ranges on the forum for comment.

I have mentioned in my previous reply how we advise members to always do their thyroid tests which will be helpful for you to get accurate results in future.

Always keep a record of your results and their reference ranges, this will enable you to know what levels you need to feel well and what dose of Levo is needed to achieve this, very useful if your GP tries to adjust your dose in future and you feel it's not necessary.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as otherwise absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

It would be useful to know if your hypothyroidism is autoimmune (known to patients as Hashimoto's), Hashi's is the most common cause of hypothyroidism. It doesn't change the treatment but understanding Hashi's will be helpful if you do have it. Testing thyroid antibodies will generally show Hashi's, they will be raised when Hashi's is present.

As hypothyroidism tends to often cause low nutrient levels, it's essential that we test these and address any low levels or deficiencies. Key nutrients that should be tested are:

Vit D

B12

Folate

Ferritin

If you have results for these feel free to post them on the forum and we will comment.

You may find the information on ThyroidUK's main website useful (this is their forum), have a read through to learn more about your condition:

thyroiduk.org/if-you-are-hy...

[66olives in reply to SeasideSusie]

Ok so no Vit D or ferritin

B12 - 212 ng/L

Folate 9.9 ug/L

I do take the tablet at 6am about 45 mins before my morning coffee.

How do I tell a doctor to test me properly when she communicates through text or receptionists. My experience with the GP leaves me unhopeful. I think it is time to change GP. I think I will also explore the the idea of using a private specialist.

This diagnosis came about because I have nerve pain in my foot and refused to be fobbed off to a physio. I actually wanted the GP to see me. Refused the physio and demanded diabetes test. Receptionist was most put out. GP added the thyroid test to the list. I had to chase the GP for these results. She text me to reduce the levothyroxine. Has not said where she is leaving the new prescription.

Thanks for all your help.

[SeasideSusie Remembering in reply to 66olives]

66olives

B12 - 212 ng/L

This is very low and needs further investigation. You haven't given the reference range (always needed when posting any test results as these vary from lab to lab and we need to see how far through your own range your result is).

When I've had my B12 tested, the GP range is (150-900) and the private lab's range is (197-771) so I expect yours is something similar so you can see why it's classed as low.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Folate 9.9 ug/L

This is impossible to interpret I'm afraid, we need the range. Ranges we see here are

>2.9

>3.9

2.89-14.5

3.89-19.45

8.83-60.8

plus others

Folate is recommended to be at least half way through it's range. If you can add the range I can comment further.

How do I tell a doctor to test me properly when she communicates through text or receptionists.

It is difficult at the moment, we are being told to use our GPs yet they make it very difficult, most are still not seeing patients face to face except if they deem them necessary, I think they're using Covid as an excuse to continue with phone appointments and even those can be difficult to get.

Most surgeries only test TSH or TSH and FT4 and it can be almost impossible to get the full testing, this is why hundreds of members here resort to private testing with one of our recommended labs. These can then be given to the GP who may or may not accept them but if any are out of range then at least we can say they should test themselves if they wont accept the private test results.

One way to try and get full testing is to quote the following:

From the British Thyroid Foundation:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

and Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"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 this article from Dionne at ThyroidUK:

[e-mail]

In both these cases you can argue that unless both FT4 and FT3 are tested at the same time as TSH then you can't know whether you are appropiately medicated. You can, of course, list any symptoms that remain as being optimally medicated should, theoretically, render you euthyroid and symptom free.

I think I will also explore the the idea of using a private specialist.

Be aware that many private specialists are also NHS consultants and will possibly treat exactly the same as if you saw them on the NHS, toe the same line and only take TSH into account. Before considering spending any money on a private specialist you should get the full thyroid/vitamin panel done to get current levels

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

(these will cost a lot more if done through a private specialist, so best to take them with you, we have private labs who do them all as one test bundle).

Also, send for the list of thyroid friendly endos, private and NHS, from Dionne at ThyroidUK:

Email - [e-mail]

then you can ask on the forum for feedback by private message on any that you are considering. We can't discuss individual doctors on the forum but you can name them to ask for feedback, members who have any information will then contact you by private message.

[66olives in reply to SeasideSusie]

Plasma folate level : 9.9 ug/L (normal range 3.8 - 25.0) as written Serum vitamin B12: 212ng/L (normal range : 160 - ) as written

reason for going private is because of my history with this GP kept ignoring a knee issue until torn cartilage wore away and is unrepairable. I had to have private scan to prove there was an issue. I asked for Thyroid test in 2016, and was told I was just menopausal, despite HRT not making any difference to the issues I had. I have no faith in my GP. Symptoms, depression COLD uncontrollable weight gain and no libido, very dry skin.

[66olives in reply to 66olives]

very confused because you are talking picogram and my level is nanogram.

[SeasideSusie Remembering in reply to 66olives]

66olives

So your Folate level is less than half way through it's range, should be 14.5 plus but you shouldn't supplement for this until further testing of B12 has been carried out and B12 injections or supplements started.

All the information I have given in my reply above stands.

You should refuse to reduce your Levo, you are symptomatic of hypothyroidism still so request TSH, FT4 and FT3 to be tested all together before agreeing to a reduction using the information given above.

50mcg is the standard starter dose, most hypothyroid patients end up on 100-150mcg, some even more.

[SlowDragon Administrator in reply to 66olives]

B12 - 212 ng/L

Folate 9.9 ug/L

This diagnosis came about because I have nerve pain in my foot and refused to be fobbed off to a physio.

Nerve pain could be low B12

[66olives]

was on 75mg of levo. will now be on 50mg ... I just hope I haven't got to go to the other surgery for the prescription.

[SlowDragon Administrator in reply to 66olives]

Which brand of levothyroxine are you currently taking

If 75mcg ….presumably this is Teva?

suggest you refuse to reduce dose and retest thyroid levels correctly…..privately if necessary

Obviously need to address extremely low B12 and folate

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER once you start taking vitamin B complex after full testing for B12 ....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex