Tsh 6 symptoms back

[BlueKeith]

Been feeling very well since my increase of levothyroxine to 100mcg. That was until October when all the symptoms started to appear again. Constipation, brain fog or (time out) as I call it , joint pain and tiredness. By beginning of November these symptoms were so full on that i contacted the nurse and requested a blood test. She said that we shouldn't really be doing one until February when my year is up but since I've said my symptoms are back she would. I got my results last Monday but haven't got a doctor's appointment to discuss my results until over 2 weeks later the 6th December . My tsh is 6 the range being (0.35-4.7) and my serum free t4 levels are 8.7 range(7.8-21.0). Does this justify an increase in levothyroxine?

[HealthStarDust]

YES. Coupled with symptoms, when on Levothyroxine TSH should be 2 or below.

[greygoose]

TSH should actually be 1 or below. For most people it needs to be below1. But, it's not the TSH the most important reading, that is just a very rough guide. The most important number is the FT3, followed by the FT4, and all three looked at in conjunction with each other, and symptoms taken into consideration - if only we had doctors capable of doing that!

That said, with a TSH over 6, plus symptoms, it does appear you need an immediate increase in dose. Sounds as if your doctor has been somewhat negligent on that score.

[BlueKeith in reply to greygoose]

Thanks. They dont even test ft3. I asked reception when I got my blood results if I was getting an increase in levothyroxine. She said that's what the doctor is going to discuss. 2 weeks till the appointment. 😱

[greygoose in reply to BlueKeith]

So your doctor continues to be negligent!!! Write to the practice manager and complain. There's nothing to discuss, you need an increase right now, and that is so obvious a child could understand. You have to stand your ground with this disease, and politely put your foot down. He could issue a new prescription right now if he wanted to.

[BlueKeith in reply to greygoose]

It's annoying how reluctant they are to up the dose and I don't get why it's yearly blood tests . Going to have to start getting fully clued up on this disease so I can have my say with the doctor. I've been too trusting of the advice they have been giving. Thanks greygoose.

[greygoose in reply to BlueKeith]

Yes, that's a mistake we all make in the beginning, I think. Until it suddenly dawns on you that they haven't a clue what they're talking about! None of them really know how it all works - or doesn't, as the case may be. They can't interpret blood tests, don't know how to dose correctly - usually doing it by the TSH, which is 100% wrong - and know absolutely zero about nutrients and how they affect the body. Yet they lord it over you and play Russian Roulette with your life.

Knowledge is power so we all need to educate ourselves about our disease. It doesn't take long to know a whole lot more about thyroid than your doctor does. So, go for it!

[SlowDragon Administrator in reply to BlueKeith]

It's annoying how reluctant they are to up the dose and I don't get why it's yearly blood tests .

It should NOT be only annual testing until on correct dose

You need immediate 25mcg dose increase in levothyroxine

You can cut 100mcg tablets into 1/4’s to get 25mcg to increase your dose now

Blood retest 8 weeks later

Likely to need further increase after next test …..or if test shows ok……another test in a further 8 weeks

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Have you had thyroid antibodies tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Batty1 in reply to BlueKeith]

I pay out of pocket for FT3 test … crazy

[jgelliss in reply to greygoose]

GG we need to have Dr's that understand thyroid patients like you. Then perhaps we can all feel optimal. Dr's know so very little about thyroid and thyroid dosing.

It's a really pity. We are on the losing end.

[TiggerMe]

If you have enough in stock I would suggest you increase your dose now and wait for them to catch up with your new dose! 🤗

[BlueKeith]

Got lots of spare 25s so will start now. Didn't want to start without doctor meeting but that's ages away. If the doctor point blank refused an increase what would my next steps be?

[TiggerMe in reply to BlueKeith]

I don't think you will have any issue with them giving you an increase as your TSH is above range ( you are aiming for around 1) you would have thought a result like this would have been flagged up and a quick call to tell you to increase with a follow up retest in 6-8 weeks... there is every chance you might still need another increase after this one so make sure they agree to another blood test in the new year, you obviously haven't found your optimal dose yet

Sorry, only just spotted this as it wasn't aimed at me by using the reply button so no notification

[WifeOfTomHardy]

If your GP refuses to increase your meds at your appointment, then I strongly recommend you change your GP for one who is more clued up. Unless they have a Masters degree in the endocrine system, most GPs are totally clueless when it comes to treating thyroid disease. You have to be your own advocate.

[crimple]

BlueKeith, have you always received the same brand of levothyroxine? I know only too well that different brands are not interchangeable and also sometimes there are issues with the medication not delivering the correct dose.

[BlueKeith in reply to crimple]

No my chemist changes brand every month. I've mentioned it a couple of times but that say they're all the same.

[Bearo in reply to BlueKeith]

Yes, the pharmacy assistant tried to tell me all brands were exactly the same. When I started talking about “different excipients” the pharmacist overheard our conversation and came hurrying over before the assistant said anything else!

Brands have different fillers - notably lactose, mannitol and/or acacia are used which cannot be tolerated by some people. NHS guidelines say that if patients have problems with different brands then they should be allowed to stick with one brand. But you’ll only get the same brand if the GP names it in the first line of the prescription.

The most ‘marmite’ brand is Teva - many can’t tolerate it, but some prefer it.

Vencamil…only in 100mcg tablets at present has the least problematic fillers. See Helvella’s detailed research on brands.

[Bella59]

Hi i was tsh 6.9 last June2022.Like you was feeling rough.I phoned for results and was told by receptionist that i was borderline.It would appear if i had not asked to get a telephone appt with a gp nothing would have been doneI. I received a call back and was told they would test later on.I asked to get my dose upped from 100 to125 mgs of thyroxine.It would appear they did not realise i was on thyroxine.I told her politely i had been on it for sixteen years.Obviously there was a slip up somewhere.I was given an a apology and my dose was upped.So glad i now ask for print outs of blood tests if i see a gp.Unfortunately i cannot get them online yet.Getting thyroid checked tomorrow as gp dropped dose 8weeks ago down to 112mgs.Usual story tsh now too low.Will see what next test says.Hope you get sorted on the right dose also.

[BlueKeith in reply to Bella59]

Thanks Bella . Pity we can't just have our dose adjusted to how well we feel instead of tsh and t4 levels

[crimple]

BlueKeith, our dose should be adjusted according to how we feel and there is something, I think in NICE guidelines. Your GP practice should have contacted you because of high TSH, well above range, when on Levo. Hopefully, someone else can send you the link. My TSH has been suppressed for quite a number of years and resulted in a roller coaster of treatment by TSH. After learning from this site I was able to advocate for myself and eventually told my GP practice that since my T4 and T3 were well within range I was prepared to take the "risk" of osteoporosis and heart issues with low TSH (0.05) I preferred a life to an existence.

We do have to educate ourselves if we want to get the best treatment. It is shocking how many GP's know so very little about the thyroid. I am lucky with my current GP, they will always listen to me. Hope you soon feel an improvement and do get the GP to write a named brand on your scrip so that you always get the same brand of Levo. I have to be very specific about my meds because fillers such as acacia powder are not good for me.

[BlueKeith in reply to crimple]

I've seen the doctor and put her straight and said that I'm pretty sure I need an increase in levothyroxine immediately and went through all of my symptoms. She amazed me by saying I will up it to 125mcg and see how that goes and if you are still feeling rough in another 4 months she would try another increase. So easy. Thanks for advice

[crimple]

BlueKeith, pleased to hear you were successful in getting an increase in levo. It is never acceptable to allow a patient to be under medicated and with symptoms. It was quite clear from your TSH that you were undermedicated.

[Bella59]

Glad to hear you have got somewhere with gp.Hopefully i will get some idea about thyroid and cortisol tests tomorrow.I phoned today and was told bloods for my Rheumatoid A are stable.Receptionist had no idea about other tests.Will need to try phoning tomorrow to get telephone appt with a gp to find out results.

[BlueKeith in reply to Bella59]

Let us know how you get on

[Bella59]

Will do when i phoned they only had test results for my Rheumatoid which are stable.I will phone on Monday to see if thyroid and cortisol tests are back.