Advice needed please : Hi I'm new to this I have... - Thyroid UK

Thyroid UK

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Advice needed please


Hi I'm new to this I have had hashimotos for 6 yrs for the past 2 yrs I've been complaining to my Dr about symptoms I'm having which are all the same as when before ur diagnosed with it and it feels like it's getting worse they've done tsh test and always come bk fine I request they test t3 t4 and say they would do it if my tsh levels were abnormal I feel my mental health is getting worse aswell.if anyone could give me some advice it would be most appreciated

11 Replies

Get private tests?

It's all very well them saying that they'll test the Frees if the TSH is 'abnormal', but what exactly is their definition of 'abnormal'? The lab usually (sometimes!) does the FT3 if the TSH is suppressed, but they're looking for the high FT3 of hyper. They don't really care about the low FT3 of hypo, and how people suffer with it, because their knowledge of thyroid is not that great.

How much levo are you taking? Even if you're on quite a high dose, there's no guarantee that all that T4 is being converted to T3. But, they seem to think that everyone is a perfect converter!

If you can, I would get private tests that include :




vit D

vit B12



That way, you'll have a better idea of what is going on. (Details of private testing on the main page of Thyroid UK. )

Vickstar85 in reply to greygoose

Cheers grey goose will definatley have a look at what's end appreciate your help

greygoose in reply to Vickstar85

You're welcome. :)


Vickstar85 Sounds as though you could be undermedicated. What dose of Levo are you on?

What is your TSH, fine doesn't mean anything. Ask your surgery for a print out of your results, you are legally entitled to them under the Data Protection Act 1998, they can't refuse but can make a small charge for printing. If they ask why you want them just say they're for your own records. If they are difficult about the printing, ask to see the screen and write the results down yourself, make sure you get the reference ranges.

You can always get private tests done - an easy fingerprick test at home will test TSH, FT4 and FT3. Also always recommended is for Vit D, B12, Folate and Ferritin to be tested. These can be done through Blue Horizon

- their Thyroid Plus Eleven includes all those vitamins and minerals which need to be optimal for thyroid hormone to work properly.

As you have Hashi's, are you addressing this by being gluten free and supplementing with selenium? Both of these are supposed to help reduce the antibody attacks.

Thankyou susie I thought that aswell but there being reluctant I was originally on cyanocobalamin but when had another test b12 was fine I'm currently on multivitamins +b complex. I I will be honest the selenium has never been mentioned to me but I did try to eat as much gluten free but not always. I will ask about results nxt wk I'm there for a blood test for diabetes, cfs... thanks for your advice will let you know next week about results. thankyoux

Sorry I'm on 100mg levo

greygoose in reply to Vickstar85

That's just a starter dose. I think you are under-medicated.

Multi-vitamins are a waste of time and money, you won't be getting anything out of it. The ingredients cancel each other out. And cyanocobalamin is the wrong one, you need methylcobalamin + a B complex.

Fine is not a diagnosis. What was the actual number?

There is no blood test for CFS. Resist any attempt to 'diagnose' you with that. Because you will then just be shunted into a siding and ignored. Anything you complain about after that will be attributed to your CFS, and nothing will be done about it. You need an increase in levo and the right tests for your thyroid and nutrients.

SeasideSusieAdministrator in reply to Vickstar85

Vickstar85 Who told you to use cyanocobalamin? It's the wrong sort of B12 We should only use methylcobalamin and sublingual lozenges as stomach acid destroys B12. Once supplementing apparently it's useless to retest unless off the supplement for 4-5 months, unless an active B12 test is done I believe.

Multivitamins are generally a waste of time and money. They usually contain too little of anything to be of help and tend to use the cheapest and least absorbable form of ingredients. Much better to test and see where deficiencies lie then supplement accordingly.

Sounds about right for my docs haven't got a clue got to go to see him nxt week for results and will discuss this.thankyou again hun


Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after).

This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

as you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too. But it does need to be 100% strictly GFree. As mentioned by others - selenium supplements can help too.

The immune recovery plan by Susan Blum is worth reading

As is the website - The Thyroid Pharmacist

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

Also do you always ensure you take your Levo on an empty stomach and then nothing apart from water for at least an hour after. Some/many of us find taking at bedtime seems to give better results.

Long research article - final conclusion paragraph below

"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in QOL to occur."

If you are on Levothyroxine the side effects of this are tiredness and weight gain, which are the same as the symptoms of under active thyroid, so really it cancels out any real help, but the blood tests are good. LOL No help at all really. When are the Doctors going to realise that the blood tests don't show how a patient is actually feeling.

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