Blood test results and insomnia - help needed for GP appointment please!

[mountaingoat83]

Hi all,

I would be very grateful to anyone who can give me some advice...

I have been taking 75mcg for just over a year, and during that time my TSH has generally been very low (below 0.1) and Free T4 has been towards the top end of the range. I have mostly felt ok on that dose. In October, I started having some problems with anxiety and insomnia which, so in mid-Oct I reduced my dose to 50/75 alternate. A blood test in Dec showed TSH of 1.3 (0.27-4.2), Free T4 not checked as TSH in range.

However in mid-Jan I felt like I wasn't doing as well on this dose, I was feeling a bit foggy and achy, so I decided to up it to 75mcg again. Meanwhile I was still having bouts of insomnia, so I figured they're not related to thyroid issues if reducing the dose didn't stop it. I think they are now brought on by the fear of not sleeping itself, but I could be wrong.

I had a retest a couple of days ago, and TSH is now 0.1 and Free T4 17 (I forgot to double check the range but I think it's about 11-22). The receptionist told me the GP wants me to reduce to 50/75 again as I am overmedicated which could be contributing to the insomnia. But when I'm sleeping properly I feel pretty much ok, (other than having cracked and bleeding skin between my fingers) and if I can manage a couple of weeks of normal sleep and feeling fine in between blips, could I still be overmedicated or would it be causing me problems most nights?

I've got an apt with my GP on Monday, and I'm wondering what to say as don't want to end up fuzzy and sluggish again, but I also don't want to be an insomniac!

Thank you so much in advance for any help,

Emma

[Marz]

healthunlocked.com/thyroidu...

Lots of good advice on your last post and thread. More than one comment indicates you being under-medicated rather than over....

I find B12 helps with a good nights sleep - always sleep well on Mondays after my injection - or of course it could be the yoga. It's usually a mixture of things with thyroid isn't it ??

Did you get those other tests done that were suggested ?

Hope all goes well with your appointment

[mountaingoat83 in reply to Marz]

Thank you Marz, I don't know how I could possibly persuade my gp I'm undermedicated though. And is it dangerous for TSH to go much lower than mine? GP didn't do other tests this time but all other levels have been ok previously. In sept my b12 was 530 (120-660).

[humanbean in reply to mountaingoat83]

The top of the range for B12 being 660 seems much too low to me, but the bottom of the range for B12 was 120? If I could post a picture of my jaw hitting the floor I would do so.

[mountaingoat83 in reply to humanbean]

Yeah it does seem a bit nuts doesn't it.

[humanbean in reply to mountaingoat83]

The only potential problem (that I know of) that could occur with a "TSH deficiency" is that your body will reduce your T4 --> T3 conversion. Since it is T3 levels that determine how well we feel that could be an issue.

People with untreated hypothyroidism generally have high TSH and low T3 levels, and feel terrible. Doctors lead patients to believe that high TSH isn't really a serious problem, and low T3 doesn't matter. But if we are "lucky" and the TSH is high enough, then we get given a pill to reduce the TSH. If the T3 doesn't go up... That's just our tough luck and (according to doctors) is not a problem.

People with untreated hyperthyroidism have low TSH and high levels of T3, and feel terrible. Doctors lead patients to believe that low TSH is the problem, whereas the biggest issue, by a mile, is the very high T3 levels.

[mountaingoat83 in reply to humanbean]

Thank you, I think I really need to push for T3 being tested.

[Marz in reply to mountaingoat83]

The B12 range in Japan starts at 500 and goes to 1300. Were you supplementing at the time of your last B12 test ?

From what I have read having a suppressed TSH is not dangerous as long as the FT3 is not too high/over range. My TSH has been 0.05 for quite some time - with a range of 0.25 - 5.00. You could ask for the FT3 test as that would indicate a better picture of what is going on.

If you have been following this forum you may remember the post by diogenes regarding the latest research and his paper - now available - illustrating the shortcomings of the current TSH test. Full paper available from Louise. He was the creator of the present TSH test and the T3 and spoke at the Thyroid UK Conference last year. All very technical but the point is made.

I read here so often that GP's should not reduce doses based on the TSH - but on symptoms.

What supplements are you taking ?

Hope all goes well with the appointment...

[mountaingoat83 in reply to Marz]

No I wasn't supplementing at the time. I try to eat well including enough foods with B12 in.

Thanks for sharing your TSH, it's helpful to know and I will try for the T3 test.

I'm not taking any supplements at the moment, I was taking agnus castus for PCOS, tried different vitamins, calcium/magnesium and to be honest I felt like I didn't know where I was at with any of it, so I pared back to just levo to see how I felt. And mostly that's ok!

Thank you

[Marz in reply to mountaingoat83]

...hope you manage to find the post I mentioned ! it may be helpful in helping you to stand firm with your dosage !

[rhibt]

Is it possible to ask your GP to test your FT3 levels too? I'm in a similar situation in that I was feeling pretty good with very low TSH and reasonably high T4 (~19) and they kept reducing me based on the low TSH but completely ignored by T4 and T3 levels. I'm now having to argue my case to increase dosage again as feeling very crappy on lower dose. It's hard to get a GP to look at anything other than TSH!

[mountaingoat83 in reply to rhibt]

I've asked for this before, and to be fair so has my GP, but the lab refuse. Great!

[rhibt in reply to mountaingoat83]

That's frustrating! I know my GP had to fill in a non-standard blood form to request the individual tests so that the lab would test all regardless of the TSH result.

[Marz in reply to mountaingoat83]

Could you have the tests done privately through Thyroid UK ??

[shaws]

Hi Emma,

I am sorry you're having a set-back with your thyroid hormone meds. It's a pity that the GP didn't check your Free T3 instead of the Free T4 as it is T3 that is the active hormone we need in all of our receptor cells for us to function normally. If T4 isn't converting sufficiently to T3, we need the addition of T3 to the T4. Usually, they reduce the levo and add 10 or 20mcg of T3.

When doctors muck about with our dose of thyroid hormones (whatever we're taking) in accordance with the TSH we get into trouble and have more problems than before. Unfortunately they believe the TSH is the 'gold' measurement when it isn't. A link:

thyroiduk.org.uk/tuk/thyroi...

This is the way we want doctors to treat us - by symptoms and not the TSH.

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

I had insomnia for a long long time but it has now resolved, thankfully. I had to change several times to different meds.

If you email [e-mail] for a copy of the Pulse online article by Dr Toft and read question 6 and discuss it with your GP.

[mountaingoat83 in reply to shaws]

Thank you shaws, that's helpful. Perhaps I could attempt to wave those links at the GP whilst begging for a T3 test! I will ask for the article too. Really glad to hear your insomnia resolved in the end. I do think a lot of it is psychological now because I'm so worried about it happening, I'm trying to work on stressing less though!!

[MacG]

Hi mountain goat.

Interesting that you seem to be making a link between bouts of insomnia and anxiety. Me too! I have worked out that the insomnia is physical and that when I am sleeping poorly I simply feel anxious. Chicken and egg! Sleep deprivation is used as a form of torture....and I recognise now that if I am sleep deprived I do feel absolutely stressed out and awful. It can make me feel really low. I do feel for you. In comparison I notice when I have slept well how resilient I feel.

For reference, I think my thyroid is sorted at the moment and I now KNOW that the sleep problems are, for me, menopausal. I recently read that women of a certain age can spend several years on a therapists couch trying to deal with insomnia, when all along it is simply a hormonal imbalance, even if you are not experiencing any other particular menopausal symptoms. I wonder how old you are?

I recently had some blood tests done privately that revealed hormonal imbalances and and have currently started using a bio-identical hormone cream, which does seem to be helping with the sleep/general feeling of well-being. I have also started taking two good quality 90mg valerian tablets on an evening. One with my evening meal and the other as I am getting ready for bed. Everything seems to settling down again.

Good luck!

PS. My TSH is very suppressed. Back in Sept was 0.02mU/L (0.3-5) and sleeping well at that point!

Hope this helps.

[mountaingoat83 in reply to MacG]

Hi MacG, thank you very much for your helpful reply and for sharing your experience. It's interesting that you say your insomnia is likely to be menopausal, I understand that happens to a lot of women, certainly it did to my mum and stepmum. I am only 32, however I do have PCOS, and haven't had a period since coming off the pill two years ago. Maybe there is a link, I don't know. I am hoping I will be able to get the doc to look into both my thyroid and female hormone issues some more, instead of just reducing my dose. Out of interest, do you know what your FT4/FT3 were in Sept when you were sleeping well? I'm glad that the cream is helping, I hope you get back to normal sleeping soon.

[MacG in reply to mountaingoat83]

Thank you for your good wishes mountain goat.

My FT4 back in September was 10.6pmol/L (11-23) and my FT3 was 4.4pmol/L (3.9-6.8).

The PCOS would suggest a hormonal imbalance to me. Doing a bit of research has revealed to me that there can be a definite link between hormonal imbalance and insomnia. As you have not had a period for two years, I wonder whether that is early menopause, in which case I think some hormone replacement would be quite necessary to protect against the risk of things like osteoporosis. I have gone down the BHRT route (bio-identical hormone replacement) rather than the traditional HRT route because I felt that I had just got my thyroid sorted and didn't want to go in with a sledgehammer! Unfortunately I do have osteoporosis. I am not particularly happy about the meds I have to take for it. But if you could stave it off with hormone replacement before it gets too bad, I think that would be much more preferable. I think, given the fact that you have not had a period for such a long time, that you would be perfectly justified in asking your GP to check out the whole female hormone panel. I found the book "It Must Be My Hormones" by Marion Gluck VERY helpful.

Oh, incidentally, my GP has made no connection with my suppressed TSH/thyroid results and the insomnia whatsoever. No suggestion of reducing meds. If my FT4 and FT3 are in range she doesn't seem at all concerned about the supressed TSH.

Do hope you get sorted.

[mountaingoat83 in reply to MacG]

Thank you so much MacG, this is really helpful. I wrote a list of what I want to speak to the GP about last night, and requesting a female hormone panel was on it. Early menopause had crossed my mind but I'm desperately hoping it's not that as we want to try for a baby soon

I've never seen an endo for either issue, so I'm hoping she'll be open to a referral if she can't do more herself. Previously they've just ignored the female hormone stuff and basically said come back when you need fertility treatment. But I've never been happy about that, it doesn't feel right to have no periods!

Many thanks again for your support, it really is appreciated.

Emma x

[mountaingoat83 in reply to MacG]

PS I did a progesterone challenge thing last year where I took progesterone for a week and a few days later it induced a withdrawl bleed. I think the doc said that meant I have enough oestrogen, but I'm just not ovulating. I strongly suspect taking a high-strength pill (Dianette) for a long time did me no good, not that I have any evidence for that...

[MacG in reply to mountaingoat83]

Hi Mountaingoat. Don't have any experience of oral contraception. Can someone else comment on this?

Good luck with everything.

[Aurealis]

I can't sleep unless optimally treated. My TSH is always suppressed even when hypo and very poorly. A Free T4 of 17 would be too low for me to feel well. An Endo started me on T3 without checking FT3 first. The key is to adjust dose until you feel well, then have a test to find out where your set point is.

[mountaingoat83 in reply to Aurealis]

Thank you, this is helpful to know. Does your FT4 go above the range for you to feel well? And if so how do you get that past the professionals?!

[greygoose]

Could also be a problem of high night-time cortisol. Could you possibly get your cortisol checked?

[mountaingoat83 in reply to greygoose]

Thanks Grey, I will add it to my list for GP! I had a 24 hour saliva test done privately last year and it was normal.

[greygoose in reply to mountaingoat83]

Well, things could have got worse since then - not that I wish it on you - heaven forbid! But it is a possibility if your hypo hasn't been correctly treated.

[mountaingoat83 in reply to greygoose]

Hmm it is a possibility, I hope not too. I'm generally ok when I'm sleeping though, go to the gym or running several times a week, feel pretty chipper etc. it's more low level stuff like digestive issues and cracked skin. I am definitely going to request some more tests though as there's room for improvement, and I want my periods back!! Wish I could take all of you to the Drs with me!

[greygoose in reply to mountaingoat83]

That would be interesting, wouldn't it! lol Poor man.

[kparamore1]

Everyone is different in how they feel with their TSH numbers but I feel better with mine at 1. When mine gets to be around 2, I start getting more symptomatic. I’m not sure what optimal is for cortisol but yours looks a little high compared to mine. Great job on the antibodies!

My antibodies are coming down but still over 600. Have you had a full nutrient panel done? My doctor did one and I was vitamin deficient in chromium, D3 and selenium, which was crazy because I take all these vitamins. Trying to get them optimal now.