Hi all I was diagnosed hypo 5 years ago and have never yet been on the correct dose of Levo so still experiencing lots of symptoms.

[SleepyMummy]

I'm in 150mg of Levo . My most recent blood work came back as TSh 1.61 and T4 15.4. The nurse told me I was within the normal range but that I would need more blood work done in 8 weeks. Is my tsh within range and why am I still experiencing symptoms?? Please help feel like I'm going insane and sick of people thinking I'm just lazy

[shaws Administrator]

When doctors diagnose only according to the blood tests and ignores the patients clinical symptoms, the patient may never get well. The TSH means Thyroid Stimulating Hormone which comes from the pituatory gland to stimulate the thyroid gland to produce hormones. This is a link you may find helpful:-

thyroiduk.org.uk/tuk/about_...

No, you are not insane. When I went on levo, it was the first time I ever had widespread pain that I could barely move. The addition of T3 helped and I am now on T3 alone. I have also used Naturethroid (bought myself) and I did well on that too. We have to have enough to alleviate our clinical symptoms, but some doctors believe it's o.k. to be kept 'within range' and treats remaining clinical symptoms as 'nothing to do with your thyroid gland'. We can quite safely say 'that's rubbish'. The object of giving us hormones is to rectify that which our body needs to feel well (everyone differs in their dose), so they should ask the patient 'how do you feel' - if fine, the patient is on the correct dose or medication and 'if unwell' they either need a rise in meds or a trial of an alternative.

Maybe your GP would add 10mcg of T3 to a reduced 50mcg of T4. It's difficult at present to get licenced T3 but that's another story.

This is an archived site but has good information.

web.archive.org/web/2010103...

Please always get the ranges of your blood tests as labs differ and it makes it easier to comment.

[shaws Administrator]

This is another link. Some of the links within these may not work. Excerpt:-

Our treatment team uses the TSH level only initially to help clarify a patient’s thyroid status. But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism and relieving his or her suffering. The only clinical value of the TSH level is to see the effect of a particular dose of thyroid hormone on the pituitary gland’s "thyrotroph" (TSH-secreting) cells.

web.archive.org/web/2010103...

[crimple]

My TSH has to be below 1 before I feel anything like normal. At least my GP now accepts that if I go over 1 I need more meds to alleviate my symptoms.

[star-flower]

I was diagnosed hypo 8yrs ago and took 150mg Levo. There was some improvement to my health initially, but gradually over time I started to get symptoms of underactive thyroid again, plus I developed IBS. Went to see private GP in London and urine test for T3 suggested I had problems converting Levo to T3. I followed this up with the D102 gene test that you can order yourself via Thyroid UK. To my surprise, I had inherited defective genes from both parents, which means I'm not a good converter of T4 to T3. I used this as evidence and have now got myself a combined T4/T3 trial on NHS. Struggling to find the right dose and have some issues with my adrenals, so like Shaws, may end up taking T3 alone eventually.

The thing is, if you are a bad converter of T4 to T3, you will get symptoms even though your blood work is in the so called "normal range". This is becuase T3 is not getting into the cells of your body and there's no blood test for this at the moment! You are not going mad - best advice I can offer is don't give up, try and sort it out and maybe check out D102 gene test. Also I recommend Paul Robinson's book on Recovering With T3 - lots of good info in there.