Misdiagnosed??

[Closeencounters]

Hi I have been diagnosed with hypothyroidism, I did not have any of the symptoms of hypothyroidism apart from feeling tired. I had a blood test done my T4 levels were quite high at 42...I have been prescribed Levothyroxine starting off with 25mg, I was having palpitations, panicky feeling breathless so I stopped taking them. It just did not feel right, I felt so ill. I was phoned by my GP to start taking levotyroxine again but increase the dose to 100mg.. This dose is worse than I was feeling before, when I don't take levothyroxine I am fine... do I really need to take it.

I had a oophorectomy and, Salpingectomy about 3 years ago, would this affect my hormones levels, I am not on hrt, do you think I may have been misdiagnosed.

Thanks

Would love to hear if anyone else has had these problems ..

[SeasideSusie Remembering]

I don't think it was your T4 that was 42, I think it was your TSH. High TSH = hypothyroidism (underactive thyroid) and Levothyroxine is prescribed. High T4 would be hypERthyroidism (overactive).

What brand of Levo did you have to start with? Was it Teva? Many people don't get on with Teva brand and have awful side effects.

Normal starter dose is 50mcg unless a child, elderly or you have a heart condition then it would be 25mcg.

Ask for a different brand and go back to 25mcg or 50mcg at the most. Retest in 6-8 weeks to check levels and see how you feel.

[Closeencounters in reply to SeasideSusie]

Thankyou for clearing the T4 up for me not too sure about these different levels its all new to me. Actavis is the manufacturer of levothyroxine, has anyone used these before?

[SeasideSusie Remembering in reply to Closeencounters]

I have been using Actavis exclusively for many years and it suits me but anyone can have a reaction to any brand because they have different fillers.

However, Actavis don't make a 25mcg tablet so if you were prescribed 25mcg and had 25mcg tablets dispensed originally they couldn't have been Actavis.

Also note that Actavis, Northstar and Almus are all the same. Actavis is rebranded as Northstar for Lloyd's Pharmacy and as Almus for Boots although they do occasionally pop up in other pharmacies.

[Lalatoot]

Please check with your gp. If your free t4 ft4 was 42 then you are hyperthyroid and should be on carbimazole. If your tsh is 42 then you are hypothyroid and should be on levothyroxine.

Both hyper and hypo can have similar symptoms so you need to look at blood results to know which one you are.

With more information we will be able to help more.

[Lalatoot]

I forgot to add the the very ill feelings you had on starting levothyroxine are quite common. Many of us have felt the same. It is a difficult journey at the start.

[SlowDragon Administrator]

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

Important to see exactly what has been tested and equally important what hasn't been tested yet that still needs testing

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.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels (and antibodies if not been tested )

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Bloods should be retested 6-8 weeks on constant dose after each dose change (or brand change) of Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).