Today diagnosed with Underactive Thyroid

[footix]

Hi everybody, I have just today been diagnosed with an underactive thyroid. My TSH level is 5.41. I have been feeling lethargic and run down for years and it doesn't matter how much sleep I have. My GP has started me on 25mg of Levothyroxine but I am terrified of taking it now as having done some research online it has horrendous side effects. Can I please have other peoples opinion on it.

[SeasideSusie Remembering]

footix

I don't know where you've read of horrendous side effects of Levo - what exactly are these supposed to be?

All medications can have side effects but it doesn't mean that everyone is going to react to them. I've been taking Levo for about 46 years and I've never suffered any side effects from them.

There is one brand that members mention they have side effects from more than any other and that is Teva. The most likely reason is that it is lactose free and instead of lactose they use mannitol and this is very likely the culprit for some people. However, some people find it's the best Levo brand for them and do very well on it.

If you have been diagnosed on TSH alone then you're lucky to be started on Levo, Primary Hypothyroidism isn't usually diagnosed until TSH reaches 10. Were any other tests done, eg FT4 and FT3, maybe Thyroid antibodies?

25mcg is a very low dose, a more realistic starting dose would be 50mcg. 25mcg is enough to switch off whatever thyroxine your body is capable of making, but not enough to replace that then give you the extra you need.

You should be retested in 6 weeks and given an increase in your dose of 25mcg, retesting again after 6-8 weeks to check your levels.

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

As thyroid hormone needs good nutrient levels to work properly, it would be a good idea to ask your GP to check Vit D, B12, folate and ferritin.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[footix in reply to SeasideSusie]

Hi Seaside Susie,

Many thanks for your detailed response. The doctor has given me Levothyroxine sodium 25microgram tablets x 28. I have read online that people feel worse before they feel better. Also my hair has been thinning over the last 15yrs so I'm hoping that this diagnosis will help with growing it back. I was diagnosed as B12 deficient and Vitamin D deficient 5 years ago and now have regular B12 injections and take 5000u of Vitamin D a day.

[SeasideSusie Remembering in reply to footix]

footix

I have read online that people feel worse before they feel better.

Well, that's a bit different from "horrendous side effects"

Yes, some people do feel worse before they feel better, but that is due to being started on too low a dose as I mentioned above. If you aren't given enough to replace your own production of thyroxine plus more to address the fact that you are hypothyroid then you will feel worse.

You can either ask for a more realistic 50mcg starter dose, your GP may be amenable, or you could point out the NICE guidelines which suggest starter dose be worked out by weight and 25-50mcg starter dose is for over 65s or people with heart problems - see nice.org.uk/guidance/ng145/...

Scroll down to

Managing primary hypothyroidism

1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.

Hair loss can be due to hypothyroidism but it can also be due to vitamin deficiencies, see hubpages.com/health/16-Vita...

As you've had diagnoses of B12 and Vit D deficiencies, I would suggest that you ask for Folate and Ferritin to be tested as these could also be low. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.

As nutrient deficiencies are often synonymous with autoimmune thyroid disease, I would ask for Thyroid Peroxidase and Thyroglobulin antibodies to be tested. Autoimmune thyroid disease (known to patients as Hashimoto's) can cause gut/absorption problems leading to low nutrient levels or deficiencies.

[McPammy]

You should find you feel much better. But you need to give it at least 3 months initially. You may need a further dose increase after that time. It’s all about getting your TSH under 2.5 as anything above 2.5 is hypothyroidism, ideally your TSH needs to be about 1.00. You also could do with checking your T4 and T3 hormone levels. Both need to be somewhere near the middle to top of your ranges, request these are checked also.