Need some advice?

[Stace3]

Hi I'm Stacey I'm new to this . I was diagnosed with under active thyroid last September and given 50mg of levothyroxine. My last three blood tests have been fine although a feel genuinely so unwell. I have been getting the following symptoms almost everyday and the doctors really don't seem to have a clue . I've had pains all over my body mainly legs that's tends to play up at night . Night sweats are really bad . Low mood . Headache , feeling sick, no energy to do anything . Insomnia and brain fog lately . I have 2 kids I look after on my own and they need depend on me so much . Hate feeling like this could anyone give me any advice if it could be anything else wrong? Kind regards .

[Hidden]

Hi and welcome to the forum

Have you never had an increase from 50 mcg Levo??! We refer to that here as a so called "starter dose". The protocol is retesting blood every 6-8 weeks there by dosage is increased in 25 mg increments until lab results "optimal" (not "normal").

Do you have your current lab results? We post our labs here in order to get vital feedback from members of the community. The average GP is woefully unqualified to treat thyroid. As a result we see people post here every day with ongoing problems resulting from poor/negligent treatment. Obtain a copy from your GP (you are legally entitled to these) and create a new post to with them listed to avoid being lost in the shuffle. We also ask for nutrient levels as well: so folate, ferritin, Vit D and B12. They are often deficient due to malabsorption problems and the result is our dosage is not converted well. So post back when you can.

[Stace3 in reply to Hidden]

I've just had my blood taken again on Thursday so here's hoping it's just a was on a low dose of levo thanks

[Heloise]

Hi Stacy, listen to Rusty. No one takes 50 mcgs. for very long. As your pituitary (TSH) senses you are getting thyroid hormone it begins going down but your needs increase. By now you should probably be taking 3 to 4 times what you are taking. Please get your test results and post them. I do not think they are fine. Your symptoms are classic for hypo and you need to raise your levo immediately.

[Stace3 in reply to Heloise]

Thanks awaiting. Results here's hoping

[silverfox7]

When posting any results always include the rangesas they differ from lab to lab so without them we would only be guessing.

[shaws Administrator]

Welcome to our forum Stacy and I am very sorry for you as I know exactly how puzzling it is to be put on a 'medication' and we feel far worse with more clinical symptoms. Also have two little children who need their mum and might be worried about you but not letting on.

However, you will now pick up some information from those of us have found a way to recover and we have to do it ourselves by reading, asking questions, and understanding how important thyroid hormones are in running our whole metabolism.

We have learned that the three words with regards to blood tests are 'fine' 'o.k.' 'normal' which should be ignored, especially of we feel they don't apply to us.

From now on blood tests have to be at the very earliest time, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levothyroxine and the test and take afterwards. Levothyroxine should always be taken first thing with one full glass of water and wait an hour before eating. Food interferes with the uptake.

If you prefer you can take it at bedtime, as long as you've last eaten 3 hours previously. If having a blood test next a.m. you miss this dose and take after test and at bedtime as usual.

Make an appointment for a new blood test and tell GP you have been advised by the NHS Choices for information/advice about dysfunctions of the thyroid gland that 50mcg is a starting dose and you'd like an increase of 75mcg. You now understand that since you have been diagnosed with hypothyroidism, that the TSH has to be 1 or lower.

Ask him to also to check your B12, Vit D, iron, ferritin and folate as deficiencies can also cause symptoms./

Always get a print-out from the surgery with the ranges. Ranges are important as labs differ.

Get your results of your new test and put them on a new post for comments.,

[MariaRose74 in reply to shaws]

Hi I'm new to this too. I hadn't been told it should be a fasting blood test etc so really useful advice. I am due next blood test in six weeks so will look to following your advice. Just want to feel better. Maria

[Stace3 in reply to shaws]

I've taken your advice on fasting before next test just awaiting results thanks for the advise

[shaws Administrator in reply to Stace3]

MariaRose74 and Stace3 - the reason for early a.m. is due to the following:-

Thirty-five years ago, fluctuating TSH levels were demonstrated and found to be at their highest in the middle of the night. Current research suggests that TSH serum levels peak at between 2 am and 4 am and decrease to their lowest levels at between 4 pm and 8 pm

So we don't want the doctor adjusting our dose because it is too low. It doesn't matter if it is to us, the patient, but they mistakenly believe that a low TSH will cause heart problems or osteo. In fact reductions may well be avoided if we have an optimum dose of hormones to relieve clinical symptoms then we wouldn't want so many blood tests.

Few of us can have a blood test between 2 a..m. and 4 a.m. - although if someone has insomnia (clinical symptom) they could well do so.

naturalmedicinejournal.com/...

[Kentoldlady]

Hi. I am also on the starter does. I have told my gp all of the above but the 2 doctors at my surgery have refused to up it to 75 because my tsh is normal. How do you tackle this? This must be a common problem.

[shaws Administrator in reply to Kentoldlady]

Get a print-out of your latest results with the ranges and post on a new question if you wish or email [e-mail] for a copy of the Pulse Online article by Dr Toft. Discuss with your GP as Dr Toft was President of the British Thyroid Assoiation. and highlight the sentence below.

I assume your doctors are looking at the TSH alone, but Dr Toft who was President of the British Thyroid Association states that most of us would feel well if TSH is in a range of 0.2-0.5 not somewhere in the 'normal range' which is up to around 5. They also let us wait miserably till TSH reaches 10 before being diagnosed.

Once you realise that doctors are poorly trained and once we start on levothyroxine, the aim is Dr Toft's suggestion below

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

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.

Stace3 MariaRose74

[JMHW]

Hi Stacey,

Whether or not your symptoms are caused by thyroid issues or by something else, your doctor should take them seriously and set up investigations. You have the right to be referred to an endicrinologist who could look into not only thyroid but other hormonal quetions. There could also be other reasons for your symptoms and you should discuss with your doctor what these might be and ask for relevant referrals. Good luck!

[Stace3]

I will get a copy so I can gather more of a understanding of this myself also thanks for the advice .