Still tired on these results : I’m so exhausted I... - Thyroid UK

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Still tired on these results

Netteann profile image
10 Replies

I’m so exhausted I can’t get out of bed most mornings now .... today midday !

They won’t increase my thyroxine to 75 as I’m in the range , which is increasing as I know it will until I’m out of the range and under active ... I’m gaining weight nearly a stone !

I take my tablet early morning before food milk etc ...

I know I dont function at the lower end of the scale I’m better nearer the 0.63

I’m now 2.54 and 3 months ago I was 2.14 so it is decreasing.. but Doctors won’t do anything.....

I’ve also noticed on my boxes of thyroxine lately it says “new Formulation “ ???

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Netteann profile image
Netteann
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SeasideSusie profile image
SeasideSusieRemembering

Netteann If your Levo is Teva many members have had problems with it. If you had a different brand before and felt better on it, ask your pharmacy to dispense the previous brand and not give you Teva again then do a yellow card report on Teva if appropriate yellowcard.mhra.gov.uk/

As for your results, you are undermedicated and most likely the cause of your tiredness. See thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft states in Pulse Magazine, "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 the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

I actually quoted that for you in your previous post so ask your GP for an increase based on Dr Toft's article.

Did you get the results of the vitamin and mineral tests you said you were having? Unless levels of Vit D, B12, Folate and Ferritin are all optimal (not just in range) thyroid hormone can't work.

Was FT3 done as you said?

Netteann profile image
Netteann in reply to SeasideSusie

All vitamins were fine seemingly. No T3 results..

Yes it’s TEVA ....

and I know I’m under medicated but he won’t put me up to 75g because I’m in the normal middle range and it could affect my heart .. so I’m stuck on 50g feel awful drained and gained weight ..

SeasideSusie profile image
SeasideSusieRemembering in reply to Netteann

Have you got a heart problem then, or is he scaremongering? Being undermedicated will probably affect your heart too. And Dr Toft is very plain in what he thinks about where our levels can be to feel well. At the end of the day, the decision is yours whether your fight to get well or give up and stay unwell.

All vitamins were fine seemingly

According to........... your doctor? What are the results, then we can tell you whether your levels are fine. Optimal levels for us Hypos are

Vit D - 100-150nmol/L according to the Vit D Council

B12 - 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."

Folate - at least half way through range

Ferritin - at least 70 for thyroid hormone to work, recommended is half way through range

If your levels don't reach those then you need supplements. Your doctor wont agree, they just think that if it's one point within the bottom of the range then it's fine, but then again they don't study nutrition so they have no idea.

Netteann profile image
Netteann in reply to SeasideSusie

No heart problems... he just said increasing it can cause heart problems which I am aware of .but I don’t function on 50g a day I know my body ...

SeasideSusie profile image
SeasideSusieRemembering in reply to Netteann

Ask him for a copy of the study that proves this.

You have an excerpt from Dr Toft's article that says as long as FT3 is within range, then TSH can be suppressed and FT4 over range, but you're not even asking to be at those levels, you just want a TSH lower than 2.54 at this point.

Netteann profile image
Netteann in reply to SeasideSusie

Been to pharmacy today they won’t change my tablets for previous ones even tho I’ve some not opened ... I have to see my doctor and request it out in my prescription... I’m so exhausted today is really bad for me

SeasideSusie profile image
SeasideSusieRemembering in reply to Netteann

I'm not surprised they won't change it, once you've gone through the door that's it. What I suggested was, not to take them back and ask to swap them, but to ask your pharmacist not to give you Teva again and to dispense your previous brand in future.

My surgery wont name brands on a prescription, but my pharmacy has a note to give me a certain brand of Levo only. Your surgery may stipulate a brand on your prescription, if not then you need to tell your Pharmacist that you can only tolerate XXX brand as the others give you side effects and can he dispense only that brand in future. Hopefully one or the other will get it sorted for you.

Netteann profile image
Netteann in reply to SeasideSusie

Picking up my old brand Rocart today after fighting for it to be done yesterday, after all it was the pharmacy who changed them without asking ...

hope I can feel better , I must admit I’ve not had a TEVA tablet today as usual take at 7am and fall asleep after for hours ... but I’m awake a little earlier today and don’t feel that numb feeling .... probably just a coincidence....

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VeronV profile image
VeronV

Hi, I had the same kind of problem, took years to get to higher doses as My TSH was "in range" at 3.7 ! Many problematic symptoms still present, but GP telling me it's in NICE Guidelines etc. After a about 3 yrs of problems It suddenly got worse, rising to 7. Put up to 125 then 150, then 175 Levothyroxine. Each time, after a period, bad symptoms returned. I put on stones in weight & 2 -3 dress sizes bigger.

GP wouldn't test T3 levels or for Hashimotos. I eventually just paid to go to a private GP from the Thyroid UK list of doctors. He sent off my blood test for T3 & Hashi. Came back, yes I had the autoimmune disease & my T3 was right at edge of "healthy", so despite high T4 Thyroxine dose, my body does not successfully convert this to T3, a not uncommon problem. He prescribed Armour -T3- from Pharmacy in Richmond upon Thames. Now I pay £30'per prescription, & £130 per 100 x2 grain tabs, (100 days worth).

I feel so much better on this, it's worth the money even though I'm on a pension. Can't get the weight off though. I do feel so utterly angry & let down by NHS, after 40 years of paying NI & taxes, & little other use of medical services in that time, to be penalised.

Good luck with your efforts with GP.

Netteann profile image
Netteann

Picking up my old brand Rocart today after fighting for it to be done yesterday, after all it was the pharmacy who changed them without asking ...

hope I can feel better , I must admit I’ve not had a TEVA tablet today as usual take at 7am and fall asleep after for hours ... but I’m awake a little earlier today and don’t feel that numb feeling .... probably just a coincidence....

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