Update on yesterday's post - after endocrinologist appointment

[Bari77]

Hi. I posted my private blood test results yesterday and question about T3 and NDT. I had so many comments and I thank to all of you who took time to respond.

I had a phone consultation with a consult endocrinologist this afternoon. Well, that was interesting. Some things were predictable like basing any decisions regarding dosing of meds on TSH alone (when questioned, she simply replied that that is what their medical body requires and that it is a hormone that indicates the level of hormones produced, didn't want to go into discussion about T4 and T3 of course).

So basically, my blood test results from last Wednesday in my GP surgery were:

TSH 0.76 (0.35-4.78),

FT4 16.3 (10-20) 63% through range

Yesterday I posted my Thriva results from this Monday:

TSH 2.19 (0.27-4.20),

FT4 14.4 (12-22) only 24% through range

I took the blood tests at similar time 9 am, fasted state, after last T4 dose 24 hours earlier. How come there is such a discrepancy? Is it because one was pin prick and one venous blood draw? I asked her that and she said, because they may use different assay (procedure for measuring) - but the ranges are very similar. My GP blood test in March was TSH 0.94 but I took Levo that morning so no good.

Of course according to her results, my TSH is lower than NHS target of 2 (and even lower than our target of 1) and she didn't want to increase by 25 mcg due to worry of me being over medicated - I guess her hands are tight because of blood test result? She actually said, she was more inclined to lower to 75 mcg as TSH needs to come higher. Some symptoms I have of tiredness, mood swings, nervousness can be both hyper and hypo. I do sometimes feel faster heart beat.

Because of my quite bad symptoms of joint and muscle aches and sluggishness, the endocrinologist suggested it may be Levo brand related (her Mum changed meds and felt much better). She advised me to go to pharmacy and change the brand and see what effect it will have and whether my symptoms will improve. I will get another appointment in 3 months and a blood test a week before that.

As for meds, I think I used to be on Mercury Pharma 100 mcg and that changed to North Star but I am not sure when as I never paid attention to these things before so cannot say if the symptoms worsening was around that time. My local pharmacy, where I went straight after the phone call, could't give me my meds history and when I asked them to order Mercury Pharma, they said it was very difficult to order different brands (they get what they are given - probably the most cost/profit effective option) so for them administrative, logistical and financial nightmare. But she agreed to try to order some for tomorrow but couldn't guarantee that they will receive it. My next option is to take the prescription and go around local pharmacies to find out what brands they stock (I already checked with one that has Aristo and Teva (no way I am touching this one as I am learning fast on here).

So, I am a bit confused as to what I need to do and what blood tests to believe really - I know that symptoms are always the best indication but as I said they can be quite similar. But officially, no increase of meds for me at the moment. My journey may be longer than I thought.

By the way I asked her about testing FT3 and why I wanted it but luckily that was at the end of the consult and she quickly but at least politely ended my already long consultation. I wonder why? lol

[Bari77]

Yes I agree, but even here we talk about TSH being 1 and less and my FT4 according to GP blood test wasn't too bad. I am quite confused and concerned about the result differences. Different Endocrinologist will be only private I fear and of course additional cost, which I know is irrelevant as it is health we talking about, but may be difficult to actually source money for.

[shaws in reply to Bari77]

Considering that the majority of doctors seem to be told that they shouldn't diagnose patients in the UK until their TSH rises to 10. Many people are very symptomatic at 10. The medical professionals usually panic if TSH goes to 1 (which the majority of us need to feel well ) - plus of course FT4 and FT3 in the upper part of the ranges - the latter two are rarely tested. They appear to be completely unaware that a low TSH doesn't mean we're on too high a dose.

[Bari77 in reply to shaws]

Yes, not a clue. It is a shame as for this reason, many people are struggling and just surviving instead of living their lives. But it is like going against a brick wall if one wants to see a change. It may happen but I don't think in the near future unfortunately.

[shaws in reply to Bari77]

Become a member of Thyroiduk.org.uk who are the ones behind the scenes and there's only three in the office who work very hard to change attitudes. but it is a long drawn-out affair as the professionals wont listen to those of us who do have hypothyroidism and who are unsatisfied by the way they respond to us, the patients, and instead of ensuring that our dose is sufficient to relieve all symptoms, the professionals willy-nilly adjust according to the TSH instead of checking the Frees (FT4 and FT3).

We have had removed from being prescribed NDT (natural dessicated thyroid hormones) given since 1892 without blood tests and when they diagnosed by symptoms alone and also withdrawing T3. They didn't even give a warning to patients - just withdrew it instantly without even informing the Associations who help and advise us. How insensitive is that and its no wonder some patients are diagnosed as being depressed (probably due to low T3 in their blood). The suffering goes on and I'm sure many relatives or friends cannot understand why we're swallowing medications but still complaining!

thyroiduk.org/who-we-are/

thyroiduk.org/who-we-are/#

thyroiduk.org/who-we-are/ou...

[MMaud in reply to Bari77]

On the NHS you are entitled to a second opinion. That second opinion can be with a named consultant and does not need to be in your own area.

Your GP can organise all this for you. I only know about it because my GP offered this very arrangement after a poor consultation.

Why not have a think about it and ask your GP for a second opinion referral.

[Bari77 in reply to MMaud]

Thank you for this! I like the sound of that! I shall ask the GP, although it is probably a rarity to find an NHS doctor that does not medicate according to TSH results. Were you happy with your second opinion?

[MichelleHarris in reply to Bari77]

My NHS Endo doesnt go by TSH but the private Endo I paid £250 for did!

Private Endo was 90 mins late, hadnt heard of Selenium and wrote to my GP telling him to stop my HRT with no tests for anything and wrote that I’d been Hypothyroid for 20 yrs when I was newly diagnosed. He was smug and a money grabber.

My NHS Endo listened. Wrote to my GP that I needed to be on NDT as I had reacted badly to Levo and the damage was visible on a scan and advised I upped my dose. He tested TSH. T4 & T3 and in the process of a whole range of other tests. He found a severe Zinc deficiency which would have affected conversion.

A third consultant I saw told me that even if they believe NDT is needed, they darent talk about NDT because doctors have been ‘struck off’ for doing as much x

[tattybogle]

I agree Bari, the discrepancy is more than odd, and you seem to have covered all the bases of time of test/dose etc.

The ranges are similar , so my own pet theory about much narrower ranges distorting %'s doesn't explain it.

I'm stumped.

That's a big TSH change for only 5 days . I have only once got my TSH to change that much , and that was by deliberately not taking any Levo for a week and then taking normal dose for a couple of days then testing (it went from 0.05 to 7.something!, don't try this at home kids)

For the rest of my 17 yrs experience TSH has only moved between 0.03 and 0.6 .

Don't know what to say....... other than 'you must be feeling really pi**ed off'

Sorry , i know that's no help.

[Bari77 in reply to tattybogle]

I am quite confused really. I will write to Thriva and raise this. Maybe they will allow me to re-test for free. I don't fancy spending any more money at the moment.

[tattybogle in reply to Bari77]

just checking ? have you ruled out boitin interference with assay (from supplements).some assays are affected some not.

It's got to be worth a phonecall to see if they will send you another test for free. Tell em the discrepancy has made you doubt the validity of their tests....might work if they want to keep your custom in future .

I know what you mean about money, my money tree has been severely pruned recently........just when i had my ducks in a row to do a bunch of tests and try the buy your own route. but now even baked beans are rationed in our house

[Bari77 in reply to tattybogle]

Thank you for your response. I don't take biotin or multi with it at the moment so that couldn't interfere but thank you for pointing it out. I would really like to see another Thriva test result just to be absolutely sure that it wasn't an anomaly result. I will get onto them tomorrow, fingers crossed. Sorry to hear about your money issues - I am in the same boat unfortunately. But we need to hope for better days.

[MichelleHarris in reply to Bari77]

I had extremely opposite results twice with Medichecks. The Medichecks was someone elses results, because I was being titated up on Levo. Being recently diagnosed last year. NHS results showed my TSH slowly coming down to 6.1 but Medichecks said I was overmedicated! This happened twice. Its worrying. I wish I had challenged it at the time but I was new to it all x

[Bari77 in reply to MichelleHarris]

I have emailed Thriva and will let you know of their response. It is worrying if these tests are not as reliable as we think they are. Personally I am a bit dubious about the fact that they are finger pin prick - surely that can be as accurate as venous blood draw.

[greygoose]

My GP blood test in March was TSH 0.94 but I took Levo that morning so no good.

Taking your levo on the morning of your blood draw will not affect the TSH. It doesn't move that fast. It will just give you a false high FT4. But, if they don't even test the FT4, it doesn't matter.

[Bari77 in reply to greygoose]

I see.Then it is really odd I had such high reading with Thriva. I may contact them.But even the Ft4 that GP did last week was quite higher than Thriva. Very strange and concerning.

[greygoose in reply to Bari77]

Not sure it has anything to do with bloods taken last Wednesday and Monday. You said:;

My GP blood test in March was TSH 0.94 but I took Levo that morning so no good.

That was in March, and there wasn't and FT4 results. So, I wasn't commenting on your latest results, I don't know about them - do you have Hashi's? - I was just giving you some general information: i.e. taking levo before the blood draw won't have any effect on TSH or FT3, but will give you a false high FT4.

[Bari77 in reply to greygoose]

Thanks.I don't have Hashi, no raised antibodies. But somebody has just pointed out that 20% of Hashi's sufferers don't have raised antibodies.

[greygoose in reply to Bari77]

That's true.

[shaws]

I think we'd all like to have doctors like the one in the following link. It is no wonder he cannot take on any new patients. One excerpt from it and it shows us, the patient, how we might improve if only given the chance of other options of thyroid hormone replacements:-

Excerpt:

"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. Unfortunately, the medical profession has clung to the misleading TSH test since the some physicians decided to do so in the 1970s. Doctors are taught that hypothyroidism is a high TSH--when it is, in fact, the state of inadequate T3-effect in some or all tissues. They are taught wrong. TSH not a thyroid hormone and is not an appropriate guide for either the diagnosis or treatment of hypothyroidism. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range. The physician cannot object. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you havecentral hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

hormonerestoration.com/

It's a pity that such commonsense isn't worldwide. It used to be before the introduction of blood tests introduced along with T4 alone (levothyroxine).

[Bari77 in reply to shaws]

Wow! Very powerful coming from a doctor. Like you, I wish we had more doctors with the correct knowledge and common sense - I mean, common they learn about thyroid in med school and it is their speciality - who else should be better informed. If surgeons were treating like this, there would not be very many patients alive today. It is really a sad state of affairs.

[shaws in reply to Bari77]

We used to have doctors who were taught as the above one, the pity is that they've all retired now and taken their skills too. The fact that the diagnosing and treatment of patients who're hypo can be a huge struggle as the professionals now know no clinical symptoms at all.

At one time patients were diagnosed upon symptoms alone and given a trial of NDT (natural dessicated thyroid hormones) and as there was no internet it was the knowledge that doctors had. The majority of doctors could diagnose a person without blood tests at all - based upon clinical symptoms alone.

Their Association in the UK - in these modern times - for some weird reason - states that we can only be diagnosed if the TSH goes above 10 - my TSH had to rise to 100 and I diagnosed myself. The day before the doctor phoned to tell me there was nothing wrong with me!

It is a disgrace that the professionals know no clinical symptoms in order to diagnose the patient who suffer and I bet some will be diagnosed with a mental condition as they've not had their thyroid hormones checked at all. TSH alone isn't sufficient when we need FT4 and FT3.

[Bari77 in reply to shaws]

You are absolutely right. It is quite sad and frustrating. I think the mental related symptoms get assigned to depression and antidepressants rather than thyroid quite frequently.

[shaws in reply to Bari77]

I think you're right and doctor's will prescribe anti d's willingly and anything else according to the patients symptoms,when they should actually be given an increase in their dose of thyroid hormones.

[Bari77]

Are you happy that you switched to NDT?

[SlowDragon Administrator]

Was this just local endocrinologist, if so probably a diabetes specialist

Email Dionne at Thyroid Uk for list of recommend thyroid specialist endocrinologists who do not just look at TSH

[e-mail]

Ft4 and Ft3 are both too low

[Bari77 in reply to SlowDragon]

I have emailed her already, thank you.

It was a consultant endocrinologist in my local hospital and this consultation was on the phone due to Covid.

[crimple]

Am I correct in thinking you take 75mcgm levothyroxine and that you say you are on NorthStar? Is that a single 75mcgm tablet or are you taking 50 + 25mcgm. Are you aware that 25mcgm NorthStar is TEVA.

Didn't Thriva test your T3 levels? Personally I prefer Medichecks tests and you often get a discount on Thursdays.

As for TSH mine is about 0.05 and has been for a few years. When GP treated me my FT4 was about 14 and I eventually discovered my T3 was 4.2, no wonder I never felt well.

Thanks to this site, learning about vitamins and T3 etc I now take some T3 courtesy of NHS, along with my T4.

Hope things improve for you.

[Bari77 in reply to crimple]

Thank you for your message. I take 100 mcg North Star at the moment. I may try Medicheck next time I do my blood tests. I am glad you found out what you needed and got better with the right medication and supplements. There is hope for us all!

[Bari77]

Amazing! Good on you! Anything is possible. Did you have hypothyroid for a long time before going to remission?