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Thyroid UK
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Not sure about beginning Levo

I have been dx'd with fibromyalgia for 20 years. Recently been seen by Endo for multi-nodular goiter which is being followed. This past winter I have felt the worst fatigue, coldness and lack of motivation ever. Fibro symptoms have worsened. Over the past two years my TSH has been 1.57, 1.49, 1.39, and last week 2.09. The increase was over a 6 mo. period The range is .4-4.0. All labs taken in mid-afternoon.

I asked my Dr .about the jump and without explanation was prescribed 25 mcg Levo. I'm not sure about taking it without info. Of course I have searched online but I'm still unsure. If anyone can provide insight I would be most grateful.

25 Replies
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Standard starter dose is 50mcgs unless been hypo a long time, or frail, over 50 or heart disease.

Fibromyalgia is often linked or undiagnosed hypothyroid

Have you had vitamin D, folate, ferritin and B12 tested? These are often too low and may need improvement by supplementing

Have you had thyroid antibodies tested? Plus FT3 and FT4

do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results.

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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

So for full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Once you start on 25mcg dose, bloods will need retesting after 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dose of Levothyroxine is slowly increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Testing 6-8 weeks after each dose increase

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Which brand have you been prescribed? Teva brand does not suit a lot of people.

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Thanks Slow Dragon for your reply.

My tests are dated except the TSH

5/14/18:

TSH 2.09

11/2015:

Free T4 1.15 (.80 - 1.90)

Free T3 2.65 (2.20-4.43)

Dr declined additional testing. I'm scheduled to start 25 mcg levothyroxine tomorrow but it's unclear why. Possible that it involves the multi-nodule goiter. I don't know if it's in my best interests to start.

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With an FT3 that low, I would think it is. Every cell in your body needs T3 to function correctly.

You are hypo, that's why you should be taking it. Your TSH isn't that high in range, but you had it tested mid-afternoon, when it would be at its lowest. Had you tested at 8 am, it would have been much higher. But, that's not the most important number. The most important number is the FT3. And yours says 'hypo'.

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Suggest you get full private testing of thyroid and vitamins. Either before starting...to set you mind at rest. Or after 6-8 weeks on 25mcg Levo

Presumably you have had scan of thyroid? This can reveal if you have Hashimoto's, also diagnosed by high thyroid antibodies

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Hi marielp612. When I was diagnosed with Hashimoto's, my TSH was around 1.5, and my FT3 and FT4 were both lower in range than yours are. My TSH never even went as high as 2.0 in the 10 years prior to my diagnosis. Random FT4 or TT4 (such a stupid test to ever run) were always very low. FT3 was of course never tested.

This could very well be Hashimoto's talking here. You'll have to test your TPOab and TGab to find out. The starting dosage of Levo is not 25 mcg, but is 50 mcg. If you start at only 25, this may cause you even more symptoms than ever.

:-)

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Four years ago when you had those free levels, your FT4 should have been at least 50% of range, or 1.35 (yours was 1.15, way back then). Your FT3 should have been close to 75% of range, or 3.875 (yours was 2.65, way back then).

Your TSH is now even higher, so your FT3 and FT4 will be much lower. When TSH goes up, the free's always go down.

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Slow Dragon, are you referring to ultrasound scan? I've have several due to multi nodular goiter. Going to try the 25mcg Levo and ask Endo to do complete labs in 6 weeks. Thank you so much..

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Endos are not always interested in testing vitamins

Do you know if you have autoimmune thyroid disease also called Hashimoto’s (high antibodies)

Important to know. Medics don’t have any specific treatment for autoimmune aspect so can be reluctant to test

But Hashimoto’s patients very often find strictly gluten free diet helps

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A goiter means that you have thyroid disease. Goiters are not normal. Nodular goiters are common with Hashi's. I imagine that since you haven't been treated, your thyroid and nodule measurements have all increased? Once you start meds, get on the right kind for you and the right dose, your thyroid and nodules should shrink. Your symptoms will decrease. If they don't, your levels are not in the optimal zone of the range for what your body needs.

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So, I've been looking through old reports and I found that over 4 years ago my fasting TSH was 3.04, which is definitively hypothyroid, I think..(even if TSH is irrelevant)

Also in 1.14:

ferritin 152 (30-400)

serum folate 11.2 (>7.2)

B-12 1662 (243-894) so I decreased by 1000 IU's

also 10/15

TPOab <20

old results, I realize, but it seems to look a lot like hypothyroidism but not Hashimoto's.

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Hi marilp612. What about your other thyroid antibody, TGab? Thyroid antibodies can change over time. Four years is a long time ago. Besides TPOab, there other one is called TGab. Both antibodies need to be tested to confirm or eliminate that Hashimoto's is the cause to your rhypothyroidism. Everyone with Hashimoto's had negative antibodies at some point. Eventually that changed and we tested positive for antibodies. Left undiagnosed and untreated for too long, your antibodies can increase into the thousands as mine did.

You'll need current testing of TPOab and TGab to find out your Hashimoto's status.

Fibro is frequently undiagnosed thyroid disease or under medicated thyroid disease. Many of your symptoms could be caused by Hashimoto's or some other autoimmune disease.

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Don't feel nervous as you are just replacing what your body isn't producing enough of. Because you are low your body is struggling but addressing the vitamins settee will help it to work better as well. The only problem is that your GP may not be up to speed but sorry not! Many on here can help with excellent advice so you can post your results for comments. Don't forget the ranges as well though as they differ from lab to lab so without them we would just be guessing. It can take some time to get yourcdose correct for you so don't forget the 6-8 weeks retesting is important. The time is because it takes 6 weeks to get each dose fully into your body. You may not feel any different for a few weeks for that reason.

But you are amongst friends so try not to feel nervous.

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Interesting to see your old blood test with a fairly okay TSH, but very low freeT3. We had a paper circulating a month or so ago that suggested many CFS patients may have okay looking TSH and freeT4, but low freeT3. (The freeT3 is the most important one.) It may be that you've got that kind of pattern, and maybe many people diagnosed with CFS or Fibro do.

It looks like you've been lucky to have a doctor who is willing to try out thyroxine and see if it helps you, when many would have you hanging around for years waiting for your blood tests to get bad enough.

25mcg is a very low dose, and sometimes it feels a bit worse before you feel better. But it's definitely worth a trial, and then to see if you are offered a dose adjustment soon. You can always stop at any time if you don't like it, and go back to where you are now. But there's a chance you will get good improvement and feel better than you have in years.

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Do you have a link to that paper SilverAvocado? I’ve was diagnosed with CFS/ME last summer and more recently I’ve found out my FT3 is low despite TSH and FT4 being normal, so I’d be very interested to read it! I’m now taking T3 only, on a small starting dose at the moment but think it is starting to help 😃

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Very unusually for me, I do have it!

frontiersin.org/articles/10...

Unfortunately it's a bit underwhelming. The overall headline is a lot more exciting than the detail.

Better evidence does occasionally come through, and some of the most well regarded doctors on the forum treated CFS and Fibro patients with thyroid hormone with good success, Dr Lowe, Dr Skinner, etc.

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Thank you SilverAvocado!! That’s very reassuring, I’m feeling quite optimistic about it 😃

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I think it's always worth trying thyroid hormone for anyone with CFS or Fibro. It won't do you any damage, the worst thing that can happen is you feel rubbish and stop it.

But the best thing is you get tons of relief from symptoms, maybe even completely well!

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Such a shame GPs/CFS specialists don’t all suggest it. I’ve only ended up on T3 because I refused to stop looking for more answers/help and went to an endocrinologist privately. NHS endo wouldn’t see my as my TSH was normal and they said they wouldn’t do anything when FT4 is normal but FT3 is low.

I know I need to not get my hopes up too much, but I’m feeling quite excited that the T3 might make quite a difference when I get to the right dose

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If freeT3 is low you will almost certainly feel a difference. But I agree with you it's best not to get too excited :p Good luck!

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Thanks SilverAvocado!!

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Hi SilverAvocado. This is pattern is consistent with Hashimoto's. When I was diagnosed, my TSH was near 1.5, and both of my free's were lower in the range than marielp612 has experienced. My TSH never even reach 2.0 in the 10 years before I was diagnosed. Occasionally I'd have some doctor test FT4 or TT4. It was always very low in range. Not one ever tested FT3, though, of course. ;-)

:-)

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Thanks for your support and insight. The focus on Free T3 helped a lot in assuring my decision. I started the Levo this morning and I have a positive attitude. I'll look into a gluten free diet. I did try it a few years ago and it had no impact.

Like many here, it's been a journey of decades (2-3). I'm sure I've been tested many times and now I see how I have fallen through the cracks. It'll be 6 weeks before I can get more labs so I'll post he results then.

This is such a great community, and I'll be reading the posts and taking comfort in your warm acceptance. Many thanks!

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Would suggest a full private Thyroid and vitamin test privately after 6-8 weeks on Levo dose

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Thanks for your suggestion. I'm in the US and don't know a thing about private testing. There is a DR, a couple of hours away, who practices Integrative Medicine. I may make an appointment with him. He's well regarded. I'm just beginning to learn how many health issues may be tied to my thyroid.

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Hi marilp612. Private testing is available here if you end up needing to do it. That integrative medicine doctor might be a really great choice for you. Before you make and appointment, you could always ask if he specializes in thyroid disease and Hashimoto's. If the receptionist says he doesn't, ask if they know of anyone who does.

You aren't kidding there! :-) Just about every function has a connection with our thyroid. It's quite amazing, isn't it?

:-)

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