Feel like it's not worth being on meds anymore

[M33R4]

Fed up. Weight is piling on what seems like daily. Been bleeding heavy including clots for 2 weeks. Legs feel heavy and muscles burn when I walk on flat. Memory like a sieve. Head foggy. Sleep disturbed. Gone a trouser size up in 3 weeks. Fatigued. Feeling rubbish. Feel like stopping 75mg levothyroxine. No sex life as bleeding for 2 weeks now and before that felt so worn out. Feel worse since gone on it. Have 1st follow up bloods FT4 TPO TSH end Feb so thought need to stick to taking it but it's making me worse. I felt tired all the time so went to Gp 6 weeks ago and on 15 January bloods revealed hypothyroidism so was put straight on 75mg levothyroxine. I'm 50 years old. Born with B thalassemia trait which makes me occasionally tired but a regime of Ferrous Fumarate controls that.

Do I pay for other thyroid tests privately to get a bigger picture or trust what my gp is doing.....?

[Hidden]

A lot of those symptoms point to endocrine issues, have you ever had your cortisol levels checked? It could be many things but it could also be a condition called Cushing's. Is the weight mainly around your middle, have your face got bigger, are you losing hair but have extra in places you shouldn't have? ie face

[M33R4 in reply to Hidden]

The weight is around abdomen area. Face is ok for now. No hair loss anymore and no extra hair in unwanted places.

[MaisieGray]

I'm afraid you have to give things time to improve, it isn't a quick fix like taking an aspirin for a headache. Your thyroid may have been failing for a long time before diagnosis, and many aspects of your body's functioning may have been affected - every cell in your body has a receptor for thyroid hormones. Also, after an initial improvement on starting Levo, it's common that we can feel worse again, which simply signifies we need a dose increase. Testing should initially be c6 weekly, with dose adjustments as required, until we are euthyroid and our symptoms have abated. I don't think you should be looking for other conditions until your hypothyroidism is being dosed optimally and it appears you still have symptoms - at the last count I think someone came up with over 400, so you can see that symptoms of hypothyroidism can be many and various. However, being tested for at least the key nutrients, would be a good idea, such as Vit D, Vit B12, folate and ferritin - although presumably you have regular blood tests for your B thalasemmia condition. When your hypothyroidism was diagnosed, were your antibodies tested, to identify any autoimmune connection? ( the majority of cases of hypothyroidism are caused by autoimmune Thyroiditis aka Hashimoto's disease, which attacks the thyroid). If not, ask your GP to test for TPO Ab and TG Ab.

[M33R4 in reply to MaisieGray]

Maisie Gray sadly my GP does not have me on regular bloods for my anaemia trait. It's only done when I visit them with fatigue.

[M33R4 in reply to MaisieGray]

Maisie gray I have an appointment on 1 March at which point I will ask your query about whether my hypothyroidism is caused by autoimmune disease. Thank you.

[M33R4 in reply to MaisieGray]

I've been on levothyroxine since 15 Jan. When should I have bloods to show any changes? I was thinking of 22 or 25 Feb?

[MaisieGray in reply to M33R4]

It takes c6 weeks for Levothyroxine to reach what is called a steady state, which is the point at which what you ingest is in balance with what your body utilise and eliminates, so generally in patient fora it's recommended that you leave that amount of time. However, if you were to look at the NICE guidelines, it refers to 3-4 weeks, so your GP could perfectly properly test you at that point, but I'd say that 6 weeks gives you more accurate results.

If you aren't being regularly tested for the B Thal, then as suggested, ask your GP for at least the tests I mentioned, including the antibodies.

[M33R4 in reply to MaisieGray]

MaisieGray I will take your advice for the 6 weeks wait before testing. Thank you. As for the other tests can I get those done privately? Please link me up if you know anywhere. Thanks

[MaisieGray in reply to M33R4]

You are very welcome M33R4 🙂

Here is a link to the laboratories many of us use: thyroiduk.org.uk/tuk/testin...

There is a 10% discount code listed for Medichecks for example, but on a weekly basis there will be various individual offers that you can use instead, it just depends what comes up when you want it. If there's a particular test offered by one of the labs in which you are interested, mention it here and someone will advise if it's the best one for what you're needing, as the similar range of tests can differ slightly between the different labs.

[M33R4 in reply to MaisieGray]

Is there any offer you know of today please? Need tsh, t4, t3, antibodies, vit d, vit b12, folate, plus anything else as gp only tested me for tsh, tpo and ft4. Thanks

[MaisieGray in reply to M33R4]

Ah, so he did test one of your antibodies, the TPO Ab? What was the result, and reference range?

Generally someone from ThyroidUK will post a link to a "Thursday offer", which you can look out for, or you can go to each of the websites and check out any offers there. I use Thriva and Medichecks generally, and I think Thriva at least, often gives an introductory discount to new customers.

[M33R4 in reply to MaisieGray]

I see TPO is on my 6 week's check - I presume he must have checked it originally to test again in 6 weeks 🤔

I will ask for details of my results. My mind shut Down when he gave me news of my condition 😣

[SlowDragon Administrator in reply to M33R4]

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Absolutely essential to always get actual results and ranges. Keep good records and note what dose you were on, how feeling, main symptoms etc