Recent blood test results

[AliciaH2018]

Hi all, I was diagnosed with graves disease last year and underwent radioactive iodine treatment. I have had regular bloods and just wanted some advice following my recent results. My TSH is 89.69mU/L the normal range 0.3-4.2mU/L and my FT3 is 5pmoI/L normal range is 11-22pmoI/L. My specialist thought I was prescribed medication back in Decemeber but they never actually put me on anything. What do my results mean? I have just had a letter saying up my dose of levothyroxine to 150 but I'm not even on it! Any help would be great. Thanks Alicia x

[SeasideSusie Remembering]

AliciaH2018

my FT3 is 5pmoI/L normal range is 11-22pmoI/L.

I think that's a typo and should read FT4. FT3 has a very narrow range and 5 would be within range.

My specialist thought I was prescribed medication back in Decemeber but they never actually put me on anything.

I have had regular bloods

Do you have results of previous tests? Who was doing the tests - GP or hospital?

How come the specialist thought you were on medication and who was responsible for prescribing it initially? Surely this is something the specialist should have been checking up on when you've had repeat appointments with him?

What do my results mean? I have just had a letter saying up my dose of levothyroxine to 150 but I'm not even on it!

Your results mean that you are very hypothyroid and I expect you feel very unwell. You can see what the normal ranges are and how high your TSH is and how low your FT4 is.

You are going to have to build your dose of Levo up gradually, it's not wise to start on 150mcg. Best to start at 50mcg, retest 6 weeks later, increase dose by 25mcg, then keep repeating every 6-8 weeks until yourlevels are where they need to be for you to feel well.

The aim of a hypo patient generally, when on Levo only, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw.This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

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 absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[AliciaH2018 in reply to SeasideSusie]

Hello, thank you for your response. My apologies I did mean FT3. I was a bit upset when typing this. My specialist does what is called satellite appointments, which essentially means I get bloods at my local hospital and they get sent to my specialist who is another hospital. They then write to me with what medication and what doses I need to be on. Then how long until they want to leave it before my next blood tests and the process starts again. I think from reading my most recent letter that prescribing me the thyroid medication has been missed. They thought I was on 100mg currently.

I don't have any previous blood results but I am going to request them from my GP on Monday.

My employer doesnt really understand my condition and doesnt understand why just going to bed early wont make me less tired. I just wanted a but of clarity around my numbers and what a high level of TSH would be and where I fit in it to try and show them why I feel unwell.

I am calling my specialist on Monday morning to find out what is going on and what medication I need to be on.

In terms of my blood tests, I am really hard to get blood out of, so I never eat before (I am usually sick and faint with my bloods when they can actually find a vein) and I always drink plenty and try and keep warm. They are always carried out at my local hospital then sent over.

Thank you for all of your advice though.

Alicia x

[SeasideSusie Remembering in reply to AliciaH2018]

Has there been no follow up with your GP after your RAI? Does he not get a copy of a letters your specialist writes?

[AliciaH2018 in reply to SeasideSusie]

No follow up with my GP. I had a follow up with the specialist after around 8 weeks. At that point I was still overactive. After that all of my bloods were done, sent to them and followed up with a letter.

It took a while for my levels to drop and then I recieved a letter to say I was now in the levels of someone with hypothyroidism. They kept requesting I have bloods every 4 weeks which I did. Then today received the letter stating I should have been on medication and if I was to up my dosage. However I am not and no letter mentioned a prescription and nothing from my GP.

Can you give me any advice for my employer? Dont worry if not. It's an invisible condition (apart from the fact I look awfully all the time) it's not like a broken leg, so they struggle with understanding the impact.

Thank you x

[SeasideSusie Remembering in reply to AliciaH2018]

Can you give me any advice for my employer?

No personal experience of this as I was self employed at my worst. However, Dr Mark Vanderpump (UK thyroid doctor) has written this article on his blog:

markvanderpump.co.uk/blog/p...

Maybe you can take something from that. Also there may be something in this article that can help:

atlanticchambers.co.uk/news...

You can print off this list of signs/symptoms of hypothyroidism and highlight how it affects you:

thyroiduk.org/tuk/about_the...

I think if I was in your shoes I'd speak to my GP about this. Ultimately he will be issuing your prescriptions, which the specialist probably thinks is already happening, and hopefully your GP will take over your care and understand how to treat hypothyroidism. I really don't understand why your GP isn't involved. Surely he originally referred you to the specialist, must have known you had RAI treatment, and I'm puzzled by the lack of involvement of your GP. Usually GPs are sent letters following hospital treatment, and probably copied in on any letters sent to you.

[pennyannie in reply to AliciaH2018]

Hello again Alicia

I was put on 100 T4 - Levothyroxine immediately after my RAI treatment :

No build up through from a lower dose - just a straight 100 mcg daily from the start.

I think I remember that you were diagnosed with Graves Disease.

It is imperative that you are monitored at 6 weekly intervals and that you are dosed and monitored on T3 and T4 blood tests results and not with just a TSH blood test, with most people feeling well when both T3 and T4 are in the upper quadrants of the ranges and balanced.

We can have very unreliable TSH readings as our TSI/TRab antibodies can ' sit on ' and distort this particular reading giving the impression we are well medicated when in fact the opposite is most probably more true.

My TSH needs to be suppressed for me to feel well, but my doctor would cut back my T4 dose so to put me ' in range ' but in reality this meant I was under medicated, though offered anti depressants and called a conundrum and at one point, thought I was going mad.

RAI is a slow burn and ultimately your own thyroid production will be negative and your thyroid disabled.

Some people can get by on T4 - Levothyroxine alone : some people at some point in time simply stop converting the T4 into T3 : and some people simply need both T3 and T4 dosed and monitored independently to bring these two vital hormones into balance and to a level of wellbeing acceptable to the patient.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. I read T3 is about four times more powerful than T4.

Your body needs to be able to convert the T4 into T3 and this can be compromised if your ferritin, folate, B12 and vitamin D are not optimal, so would suggest you have these vital vitamins and minerals tested and maintained at optimal levels, possibly higher in the ranges than your doctor may see as necessary.

As I'm sure you are now aware, you should have been on thyroid hormone replacement before now and would suggest an urgent GP appointment and a sick note until such time as you feel well enough to go back to work. It may look invisible but thyroid disorders can have serious implications if not treated optimally, so please cut yourself some slack and allow your body time to recover.

[AliciaH2018 in reply to pennyannie]

Hi pennyannie, thank you for your detailed response. I havent taken any time off sick other that when I was radioactive and I was not permitted on the premises. I have considered it a few times but worked from home instead. My previous manager had a good grasp on my symptoms and was really supportive. My new manager thinks I just need an early night.... or to get off my arse and exercise. I've tried explaining ot but he doesnt get it.

I was overactive and when I had my follow up appointment after treatment at the hospital they wouldn't put me on anything until it had gone the other way and I was hypo.... I thought they were waiting for it to get to a certain level before giving anything hence bloods every 4 -6 weeks. Now they think I've been on meds since Decemeber. It's really knocked me for 6, and I feel really let down. Made my cry to be honest. I feel so terrible, it's hard to describe to people, so when I say I feel tired and like my brain is sat in treacle, they say yea me too I didnt sleep well last night. It's hard to explain the difference.

I am going to call my GP on monday morning and get this sorted.

Thank you again x

[pennyannie in reply to AliciaH2018]

Yes I know, I have been in a similar place, several times over !!

Your body clock has been running very fast, and now you have hit a wall at 100 mph.

or feel as though you have run a marathon in 4 minutes and it's time to do it all again.

The thyroid is a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

RAI can ' trash ' your vitamins and minerals so this will only compound your issues, so get those already mentioned action as no thyroid hormone replacement works if these are not optimal in the ranges.

In one way it's good that you can work from home, but just try and do what you need to, and no extra, do you may recognise yourself here ?

If so, learn to say ' enough ' to yourself when you have done what you need.

Rest and recuperate as it takes time to come back resilient and strong to face people, work and ' life ' stressors.

Get that doctor's appointment immediately Monday morning, and if your surgery is closed contact the specialist on Monday and get things moving for yourself.