Help, confused, so advice please

[Wheat]

hello, I am trying to work out the best time to take my levothyroxine so NHS blood test shows a higher TSH (and consequently a lower T4) if that's possible. Or to stop taking it.

I have auto immune thyronditis. Both antibodies high, out of range. Ords thyronditis.

I have all symptoms of being very hypothyroid but my Medicare results March 24 showed low just out of range TSH 0.26 (range 0.27 - 4.2) , T3 4.3 ie at 32%, T4 23.3 (12 - 22 range) .

I think I am a poor converter, and was definitely having a flare up at this time. Having another one now. Take 125mcg daily Levothyroxine.

The NHS do not know about conversion , or auto immune conditions it seems to me. I could not cope with them lowering my dose.

District nurse will come on an unspecified week day between 8am to 4 pm.

The only way I can see is to take a dose early Sunday, then no Levothyroxine until the Friday after 4pm, or maybe reduce dose to 25 mcg. Maybe this regime for two weeks until the nurse takes bloods.

Naturally not keen on doing this.

Your comments would be appreciated, thank you. Best wishes to all. X

[RedApple]

This post might be helpful:

Timing and reasons for Thyroid blood tests healthunlocked.com/thyroidu...

[Wheat in reply to RedApple]

Thank you for replying. I shall look at all links you have provided.

It is so hard when you have no choice as to when nhs bloods will happen. More to the point I describe myself now as 'thick as two short planks'. 😵‍💫😂

[Sparklingsunshine in reply to Wheat]

I assume you are housebound and unable to get to the surgery or blood taking unit. I understand its very frustrating not knowing when they'll turn up. I think you could safely describe yourself as a poor converter, your March FT4 results were over range but your FT3 is medicore.

Unfortunately the tips the forum gives as to timings of blood tests and testing protocols are patient to patient tips. The NHS doesnt consider them to be important, they dont see the need for a fasting blood test before 9am.

Any old time will do, eating doesnt make a difference and it doesnt matter if you take your Levo before the test ( it actually does).

Unfortunately not taking Levo for a few days is unlikely to impact your TSH as that moves very slowly, but it might get your FT4 down into range, which could be a point in your favour if your TSH is low and your GP wants to reduce your dose. However it could be you might benefit from a small reduction which could improve your conversion.

Are you taking any vitamins/supplements?

[Wheat in reply to Sparklingsunshine]

Thank you for your reply. Yes your assumptions are correct. Privare blood tests are taken as advised. I remember about 15 or more years ago when i went early a.m. to surgery phlebotomist and was instructed to be fasted and no levo. By comparison NHS now seem 'sloppy'.

If I can get T4 down by lowering or missing a few doses that might be helpful. Shame about the TSH🙂.

Lowering Levothyroxine seems wrong when so hypothyroid. Suppose it depends if this is offset by improving conversion to more than compensate . Last time they lowered Levo. I suffered hypo symptoms and infections and digestive problems associated with lowered metabolism. Telling drs symptoms suffered was ignored

Which is why I will do up to date private blood tests to check whats really happening, then decide how to treat myself . I do take a lot of supplements., and adding B1 next. Best wishes X

[Sparklingsunshine in reply to Wheat]

If you can hang on to your 125mcg, you can always lower it slightly yourself, no need to involve doctors. I was wondering if even a small decrease of 12.5mcg would be enough to slightly lower FT4 and aid conversion to FT3. You could achieve this by cutting a 25mcg tablet in half or alternate day dosing of 100mcg/ 125 mcg.

If the worst happens and your GP wants to lower your Levo you could always negotiate, ask to stay on the same dose and ask for a retest in 3 months, or tell a white lie and say you take biotin and forgot to leave it off for a few days. It interferes with thyroid testing.

The hoops we have to jump through are ridiculous.

[Wheat in reply to Sparklingsunshine]

I was just thinking of reasons to put off the test, like I was feeling awful and unable to obtain gp contact/help, used higher dose so results would be squewed. Which is largely true.

Biotin is good too, and less contentious ie no implied criticism of any gps . I want to be honest but 'needs must' I suppose.

It is a new doctors surgery and a medical review with the pharmacist is required for new patients and she has arranged Thyroid bloods. If the gp makes the actual decision to reduce I will negotiate as you suggest.

Thank you. Fingers crossed. 🤞X

[Sparklingsunshine in reply to Wheat]

You could always "get" covid lol. And covid can skew results so its advisable to leave it several weeks before testing.

[Wheat in reply to Sparklingsunshine]

Sorry late reply, went to bed early

Thought of Covid but let's not tempt fate, 🙂.

[greygoose]

What do you mean by a 'flare up'? I have to ask because everybody seems to mean something different. Do you mean when you temporarily hyper due to dying cells releasing their stock of hormone into the blood? If you do, then there is not much you can do about that. You cannot manipulate the TSH because it moves very slowly. It is low now because your FT4 is so high. And it's doubtful that it would move at all just stopping or lowering your levo for a week.

Do you have results from other blood tests on the same dose? That might help us see what's going on.

If is most inconsiderate of the NHS to have the nurse just dropping in any old time. I wouldn't like that myself! To catch the TSH at its highest the blood draw needs to be done before 9 am. But doctors refuse to accept that, I've noticed.

[Wheat in reply to greygoose]

Thank you for your reply.

By flare up I mean suddenly very Hypothyroid pale yellow skin, red sore eyes, dry hair like straw, dry skin, split nails and chronic fatigue and brain fog. Maybe some hyper symptoms burning feet and legs to knees. P.A. diagnosed so I s.i to get right treatment, it was over 150 so ok.

I think its as you describe. mnhh ☹️.

Always researching what will help.

I shall private blood tests and decide how to treat myself if it goes horribly wrong with the NHS. Best wishes. X

[greygoose in reply to Wheat]

OK. But technically, I don't think that can be called a 'flare-up'. Burning feet is more to do with low B12, than thyroid, I think.

A lot of us do end up self-treat because it all goes horribly wrong. And not just with the NHS! I live in France and it's all horribly wrong here, so I self-treat. I think I would be dead by now if I'd listened to doctors.

[Wheat in reply to greygoose]

My B12 is ok, I didn't have burning feet but peripheral neuropathy in rhs toes. I s.i. 3 x daily, take co-factor.

Like you if I had listened to gps the result would have resulted in my death.

Drs think peripheral neuropathy is a diabetic condition . I have since learnt it is a B12D and Thyroid symptom too. Maybe the same applies to Throid with regard to intense sudden burning sensation of feet and legs up to my knees. It was an intense burning sensation and went with iodine drops. Yes I know to avoid iodine being hypothyroid but I was desperate to stop it.

I am sorry that in France you have the same type of problems. Unfortunately, I am learning this struggle to obtain the correct treatment is prevalent in many countries. X

[greygoose in reply to Wheat]

I think it's a universal problem.

[Wheat in reply to greygoose]

Yes im afraid you might be right. It hurts my head to think of it. X

[Sparklingsunshine in reply to Wheat]

I have Fibromyalgia and also PA and have tingling and pins and needles in my hands and feet all the time. I've never gotten to the bottom of it. In my case everything gets blamed on Fibro. I suspect maybe small fibre neuropathy. I'm not diabetic and never have been.

[Wheat in reply to Sparklingsunshine]

Again, sorry late reply, bed early. Seems we have some of the same conditions. Its not easy I know.

Ultimately I have to do what is right for me. I will try to work with drs but if I expect to have to treat my thyroid condition I hopefully won't be too upset.

Need to phone Surgery as nurses can't come one day when workmen are here. Best wishes x