Managing symptoms while increasing levo dose

[AmieL]

Hi

Has anyone got any tips for managing symptoms while I'm going through the process of reaching the correct dose? I started on 25mcg with a TSH of 7.4 (0.2 - 4.2). Upon repeat testing at the beginning of the month my TSH had actually gone up to 7.95. Not a significant increase, but given that I wasn't medicated at all the first time it 'should' have gone in the other direction. I'm now on 50mcg and waiting for my next blood test, which should be in about 3 weeks. My GP said that she wasn't overly concerned by the results and explained that she thought my thyroid had taken a break from working so hard now that I have an external source.

I felt amazing for my first month medicated, but since then have felt worse than ever. I'm exhausted, I ache all over, I forget things, I can't think straight. I know this should just be temporary until I reach a sufficient dose, but right now I'm struggling. Yesterday I was picked up from work and cried on the way home because it hit me how awful I felt.

Has anyone got any advice for getting through the next few weeks/months?

Thanks

[SlowDragon Administrator]

Ask your GP to test vitamin D, folate, ferritin and B12

Plus do you know if you have high thyroid antibodies? Has GP tested these , if not ask that thyroid antibodies are tested. If high this is autoimmune thyroid disease (also called hashimoto's)

About 90% of primary hypothyroidism is due to hashimoto's so its more likely. Low vitamins are common

If you have hashimoto's then vary very many of us find strictly gluten free diet helps. You might want to ask for coeliac blood test first.

[AmieL in reply to SlowDragon]

I don't have the figures for my vitamin tests (they were done in August and not repeated as they were good). I can't remember them, but I have seen them and they were all high in range, so no issues there.

And no, I don't have Hashimotos. Tests were a resounding negative.

[shaws Administrator]

Your dose was too low for a starting dose. It is usually 50mcg with blood test and 25mcg every six weeks. 25mcg would usually be for someone who is very frail with a heart disease.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take it afterwards. I wouldn't bother divulging your routine as you will probably be told that it isn't necessary to fast (food can interfere with the TSH result) or that there's no need to have an early a.m. test. (as they believe a fasting test is for cholesterol alone). However, if hypo we cab gave a higher cholesterol which can be one of the clinical symptoms but it reduces once on thyroidhormones.

The above hints are so you will not be denied an increase because GPs seem to only look at the TSH and might adjust our doses unnecessarily. The aimis a TSH of 1 or lower.Many,many doctors will adjust our dose if TSH is below 1 as they think we will get a heart attack or osteo. Unless we are very frail with a heart disease, having a very low TSH is helpful. TSH means thyroid stimulating hormone and it is from the pituitary gland.

Always get a print-out of your results with the ranges after each test for your own records. Also, if you wish, you can post for comments for members. Ask GP to also test B12, Vit D, iron, ferritin and folate as deficiencies can cause unpleasant symptoms too.

[Tasker]

Hi AmieL. I have only recently started to feel my symptoms are consistently improving so I have very recent memories of feeling like you do, and you have my sympathy. In terms of getting through these early weeks, my advice is to be gentle on yourself; accept that you'll be able to do less for a while ( frustrating as that is); try to eat healthily and not just sugar and caffeine to keep going (that was my temptation and of course you end up feeling worse!); make sure your work colleagues know you're ill so they understand if your performance dips; do some gentle physical activity if you can but not strenuous exercise; and make sure you use some of the energy you do have for something you enjoy occasionally, not just for work.

Like you I was started on the very low dose of 25mcg though I'm not old and don't have heart problems, and once I was on 50mcg it took a few weeks to start to feel I was turning the corner - and we are all individual so you may need more than that. It's a slow process but hang on in there. I have found it helpful to do lots of research especially via this forum to try to understand my condition better - that has helped me feel I'm taking control of things.

Also do get a copy of your vits and mins results and post on here to check they are at optimum levels for a hypo sufferer, and get antibodies tested. As mentioned by someone else already, gut health can be a big part of this if you have the autoimmune version and I have gone gluten free and taken other steps to help my gut, and I'm sure that's contributed to the improvements I'm feeling.

Good luck, and I hope you start to see some improvements soon.